Kennedy "Peanut" Bonomo

3 Years Old

2011-08-13T21:41:00.000-07:00

Saturday, August 13, 2011

Dearest Kennedy,

I can not believe that you would have been 3 years old today. I often times think to myself what you would be like if you were here.....What would be your favorite food? Would you be a tom boy or a little princess? What you would look like? Sadly, I will never know the answers to my questions, but that doesn't stop me from continuing to think about you. We put together a BBQ @ Grammy and Grandpas and invited everyone over. Your Daddy and I wanted to make sure we honored your birthday and have a celebration in your memory.

It wasn't the same without you there. This is the first and not the last birthday we have to celebrate in your absence. We miss you more and more everyday. Your baby brother Collin looks so much like you. He has your attitude and spunk. When he is happy, his face lights up and you can see it in his eyes - it is as if he smiles with his eyes, just as you used to do. We talk to Collin all the time about you. We tell him stories and show him pictures of you often. It is my goal to ensure your memory lives on as long as I do.

Well, I love you and miss you!!!

Happy Birthday Peanut!!!!

Love,

Mommy, Daddy and Collin too!!!

Mirror Image

2011-06-29T18:11:00.000-07:00

Wednesday, June 29, 2011

Sorry it has been so long since my last entry. I have been a little preoccupied the last couple months. As you know, we welcomed Kennedy's baby brother into the world on Monday, May 2, 2011. He has been such a blessing. I just know that Kennedy is beaming down from above with such joy and pride. So far all has been well with Collin - with the exception of a minor surgery he had on Sunday, June 5, 2011 at just 4 weeks of age.

We took Collin into to our amazing pediatrician earlier that week because of some vomiting and overall irritability. He advised that it could be a couple things. He said there were two strains of the stomach virus going around, it could be reflux, or possibly pyloric stenosis. Everything I was describing to our Ped sounded like classical reflux symptoms. He prescribed us an antacid and sent us on our way. By Friday things were only getting worse. I called our Ped friday night explained the situation. He said he would be in clinic on Sunday and to bring him in if things progressed. Of course I was overly anxious. I went on with my laundry list of questions regarding dehydration. He gave me five key pre-cursors to look for. He proceeded to tell us if any of these occurred over the weekend to just take him into the ER. Well Friday night was horrible. Collin projectile vomited all evening, screamed bloody murder, and decided that it was unnecessary to produce urine any longer. Once we went about 24 hours with only two small wet diapers we decided to take him in.

After lots of waiting we received an ultrasound and were given the diagnosis of pyloric stenosis - which is a narrowing of the pyloric muscle (a muscle connecting the stomach to the small intestine). This muscle becomes extremely large and does not allow food to pass from the stomach to the small intestine. We were told that he would need a pyloromyotamy to allveiate the problem. I remember when I first heard that Collin could potentially need surgery, my mom and I just looked up and said to each other, "Kennedy, don't worry we haven't forgotten about you". Walking through the doors of that hospital, seeing some of Kennedys nurses and being in those very rooms Kennedy occupied a couple years ago as she fought for her life was a little overwhelming.

But this time unlike any other time with Kennedy, there was a cure for this particular issue. Collin would be cured. Something we prayed and prayed about for our Kennedy, but unfortunately it was not gods will. Collins surgery was a success and he has been a new baby ever since. No more vomiting and no more irritability. I must say that I feel so fortunate to have Kennedy up above looking over us. Collin is one lucky little brother to have such an amazing big sister - his very own personal guardian angel!

I would be lying if I didn't say that having a new baby in our lives hasn't been hard. I remember the very first night we brought Collin home and laid him in our bed for the evening, I was overcome with extreme guilt. I could not help but feel as if I was replacing our baby girl with this new baby. Deep down I know that Collin is not a replacement for Kennedy, but at that moment I could not help but feel utter weakness and sorrow for myself. I wanted to look down in that bed and see our Kennedy laying there, instead that spot was occupied by her baby brother.

Well, I started off this post wanting to go in a totally different direction, but apparently I went off on some wild tangent. What I originally wanted to talk about was something that took my breath away a couple weeks ago. The three of us went to our local italian deli to pick up some items for a BBQ we were hosting. As we were waiting in line, I glanced over at Brian who was holding Collin and what I saw just about brought me to my knees....

What I saw in front of me brought tears to my eyes. What was my husband holding my son, appeared to be a mirror image of my Kennedy. I made Brian stand still so I could snap this photo. That one moment made my day!

Mommy misses you Kennedy! Our life just isn't the same without you in it!!

Introducing Kennedy's Baby Brother....

2011-05-22T19:06:00.000-07:00

Sunday, May 22, 2011

The Bonomo Family is proud to introduce the newest member to our family.....

(Newborn Photo Shoot - Collin Rocco Bonomo 5 days old)

Collin Rocco Bonomo

Born: Monday, May 2, 2011

Time: 8:03 AM

Weight: 8lbs 3oz

Length: 19inches

Mommy Daddy and Baby are doing great. Collin was born at Loma Linda University Medical Center (a place that has become like a second home to this family). Even though Kennedy is not here in a physical sense, I know that she is beaming down from heaven upon her baby brother. Collin has many distinct characteristics that emulate features possessed by his big sister. The first 24 hours I literally sat in awe looking upon the miracle that I was given. It was very bitter sweet to be holding Collin, because such a big part of me yearned to have Kennedy in my arms. Will update more sometime this week!!!!

(The most amazing photo....Jen our photographer left me speechless with this picture. The meaning behind the sign could not be more true)

Increasing by 1

2011-05-01T14:27:00.001-07:00

Sunday, May 1, 2011

(The very first time Mommy laid her eyes on you Aug. 13, 2008 - I had no idea what the future held for us but I loved you without limitations. You were the single greatest thing to have ever happened to me)

Dearest Kennedy,

Tomorrow we meet your baby brother for the very first time. Mommy is very anxious for the big day, however, I am also very saddened at the fact that you will not be around to celebrate in this joyous occasion. For over five months I remember conjuring up all sorts of ideas about the day you and Collin would meet for the very first time. Oh we knew how much you loved babies around you. You always became so engaged at the sights and sounds of one near by you. You had this intuitive sense for small babies and they seemed to bring you such peace. You were the first one to feel Collin kick inside Mommy's tummy. You spent hours and hours in close contact with him as Mommy held you.

But sadly instead of a day full of pure joy and excitement....tomorrow will be a day full of mixed emotions. Of course we are elated to welcome your baby brother, but we are also greatly saddened in your absence. I know as your daddy and I are in the operating room waiting for Collin's grand entrance, you will be watching over us all. Collin is the luckiest little boy to have such an amazing big sister. So tomorrow our family grows by one more member - we move from being a family of three to becoming a family of four. Even though you are not physically present anymore your memory is and never will be forgotten. Because of you Daddy and I have grown so much as individuals and you have made us even better parents.

I love you and miss you more and more everyday. I wish things were different and that you were back home with us, but for now I have accepted that our separation is only temporary. I look forward to the day that we are reunited.

Love you forever and ever,

Mommy and Daddy too!

Proud

2011-03-24T13:37:00.000-07:00

Thursday, March 24, 2011

Dearest Kennedy,

As I reflect upon your life today I am overcome with emotions. The logic of medicine said you should have never lived as long as you did, but you had plans of your own. You were such a fighter. We were told over-and-over that it would take a miracle for you to leave the NICU alive. Your Daddy and I were so very proud to carry you through those hospital doors on Thursday, October 16, 2008. We were then told that it would take a miracle for you to live to celebrate your first birthday and when you accomplished that feat let me tell you something, we celebrated and danced like we had won the lottery. Day in and day out we were overjoyed and in awe in your presence. You were so head strong and determined (I wonder where you got that from?) Doctors didn't give us much hope. According to them, it was only a matter of time before your journey here on this earth would draw to an end. You fought on.....

You lived:

2.41 Years
28.89 Months
125.41 Weeks
878 Days
21,068.85 Hours
1,264,131 Minutes
75,847,860 Second

You were such a fighter. You made it quite evident that this was your journey and you were going to be responsible for writing the ending to your story. No one was going to dictate to you how your life would turn out. I must tell you Kennedy I am so very proud of you. I was given the most amazing gift of life on Wednesday, August 13, 2008. The way I feel about you can only be described as the way a parent must feel when their child becomes president or finds a cure for cancer. You spoke few words and were here on this earth for such a short time, but the impact that you have had on myself and others is unbelievable.

You continue to live on inside of me! I celebrate your life daily. This world will never forget you!

I love you,

Mommy and Daddy too

We are the Lucky Ones

2011-03-10T18:14:00.000-08:00

Tuesday, March 8, 2011

(Christmas 2009 - Kennedy was always so mesmerized when she was in her Daddy's arms)

My Dearest Kennedy,

Today marked another month since you left us here on earth to go walk hand-and-hand with our lord. I must admit I miss you more and more as time goes on. The idea of permanence has become an incredibly hard concept for me to grasp. It is very heartbreaking to know that I will never see your face, hear your voice, or touch your skin here on this earth. I have been struggling knowing that I have to wait an entire lifetime before I am able to be by your side again.

Your brother is doing amazing. The doctors say that mommy has a big boy growing inside of her belly. I am anxiously anticipating his grand arrival. I can not wait to see what traits or characteristics that he possess of yours - will it be his hands, hair color, eye shape, nose, mouth....It does not have to be something big, I just want him to carry something of you on him forever.

I know you already know this, but you have the most amazing daddy in the whole world! He has been taking extra good care of mommy in your absence. Kennedy, you have really helped to shape your daddy into one of the most selfless, thoughtful, caring individuals. He is still very quiet but when he talks the words that come from his lips are profound. We went out to dinner yesterday and I was telling him about another little baby that was born very sick. This baby's mommy and daddy were about to be faced with the toughest decision of their life. He was only 14 days old and because of his diagnosis his prognosis was very poor/terminal. They were going to remove him from life support. They were praying and praying to god for a miracle, unfortuanelty he had other plans for this very special little boy (just like he had for you).

As I conveyed this story to your daddy he looks back at me and says, "we are so lucky". I knew exactly what he was talking about, but asked for clarification to ensure we were on the same page. He proceeded to tell me how sorry he feels for families put in this position and feels incredible gratitude that we were able to take you home and get to know our first born baby. He continues on by saying, that we unlike many families were able to enjoy 29 long months with you in our lives. We exposed you to all the world had to offer - we took you any where and everywhere sharing with you life's experiences. He proceeded to say that so many other families are not as lucky as we are and for that he is eternally thankful. We got to know you Kennedy on such a deeper level. We were able to share you with the world and become enamored in your presence.

I must say Kennedy - your daddy is one smart cookie. We are lucky and blessed! Even though your time here on this earth was short we live with no regrets. We do not second guess any of our decisions in your care and we know that we gave you the best life any two people could possibly offer. We are the lucky ones.....god decided to bless us with you as our daughter. To have had you in our lives even for such a short time is a gift that none will ever surpass. So many other families are not as lucky as we are.

I love you more than anything in this world Kennedy. I continue to share your story with everyone. You will forever be a presence in this family. One thing I can ensure you is that me, your daddy, grammy, grandpa, auntie and uncle will never ever forget you. We talk of you often and reminisce about your life. I have said it once but I will say it a million times over. I would endure this most horrific heartache over-and-over agin because knowing you and loving you was SO worth it.

Mommy loves you....

Love,

Mommy and Daddy too

One Month....

2011-02-16T16:59:00.000-08:00

Tuesday, February 8, 2011

(1 month old - 9/16/08: Our first picture of you after your successful extubation. Doctors from all over the unit stopped by to see the baby that no one thought would make through the first night)

Dearest Kennedy,

I can't believe I have had to endure one month on this earth without you! I knew that this day was inevitable, however, knowing that you were never going to live a full long life still hasn't made loosing you any easier. My arms long for your warm body, my ears search for the sound of your voice, my nose yearns for the smell of your breath, my eyes continuously scan for the sight of your beautiful blue eyes, perfect button nose, long curly shiney red locks, and rose red lips and my heart aches. I miss you more than most will ever understand.

The thought that your absence on this earth is permanent is a hard concept to wrap my mind around. However, I am very comforted in the simple fact that I was able to immerse myself in your presence for almost two and a half years. I was given the best gift when god blessed me with the most perfect baby girl.

We all miss you so much. There is not a day that passes that your name is not spoken or a one of your pictures doesn't catch my eye. Daddy has been keeping busy getting your brothers room all ready for his grand entrance on May 2, 2011. I know you will be there front and center with the best seat in the house.

I got Grammy a gift from you. It is a hand painted personalized wood plaque which reads, "I wouldn't be so spoiled if someone would just spank Grammy". She loves it! As you know better then anyone - I hate change. But as with anything, I am learning to adapt. I yearn for the day when we reunite, but until then I will continue to remember you by sharing your story - to anyone and everyone that will listen (and even to the ones that won't LOL). I am the women I am today because of you Kennedy and for that I am eternally grateful.

I love you and miss you everyday!

Love,

Mommy and Daddy too

Kennedy Talking

2011-02-06T16:53:00.000-08:00

Sunday, February 6, 2011
It is often thought by many that Kennedy's life was full of sadness and pain. That she was this empty lost soul with no brain that was unable to experience the simple pleasures of life. However, the presumptions of others couldn't be farther from the truth. Her family and our closest friends knew different. One of the worst statements I would hear from random individuals was how sorry they felt for Kennedy. My immediate response was and continues to be WHY? Don't feel sorry for her. She had one of the most amazing life's - she was showered with love, she was comfortable and without pain a vast majority of her life, and she was blessed with family and friends that would do anything for her. I tended to use my blog as an escape. It provided me with a therapeutic outlet where I could write out my emotions, struggles, and battles that were faced by my family.

Anyways, to the point of this post. Around 10-12 months of age Kennedy finally began babbling. She would coo and ahhh all the time. It was so unexpected because we were never given any hope that we would ever be able to experience this with our daughter. In addition, it became such an invaluable tool which allowed us to gage her moods by. Around 15-16 months she began having conversations with us, putting together two syllable sounds - in those times it was so easy to forget Kennedy wasn't a "typical" child. Hearing her voice could turn even the worst of days around. She was communicating to us in her own unique way.

I have tens of thousands of pictures of Kennedy. I never really video taped her (not really sure why) but around October once I got my new iphone (aren't grown-up toys so fun) I began recording Kennedy. October 14, 2010 I recorded one of the best 2 mins and 41 secs. Kennedy and I were at home sitting in our rocking chair having a long ole conversation back and forth which we did all the time, but this time I began to record her. She was saying, what to me sounds like mama and dada. So I thought I would share it with all of you.

A Mothers Words

2011-01-31T20:12:00.000-08:00

Monday, January 31, 2011

On Saturday, January 8, 2011 at 5:30 pm I lost one of the most important things in my life - my two and a half year old daughter Kennedy. Her life and death has forever shaped how I will live this life here on earth. Kennedy is the single greatest thing to ever happen to me. I feel so blessed to have been given the opportunity to have known the most amazing human being to ever set foot on this earth. She was and will continue to be a shining force in my heart and soul. She has touched me deeply and has taught me more about life than any other person or life experience ever has.

Today is a day for us all to mourn through celebration. Kennedy’s life was nothing short of miraculous. How does a mother say goodbye to her little girl? She doesn’t! She will never accept the fact that the precious angel that touched her heart like nothing else is gone. What brings her piece is that she is not gone. She lives. She lives inside of all those whom she’s touched and she lives with god. Someday that mother and little girl will be reunited again – and I can’t wait!

We have heard from so many people who’ve told us about how Kennedy’s story has touched their lives and made them reevaluate their relationships and reprioritize what’s important to them. People started to pray again, some people began praying for the first time and some were spending more quality time with their children and all learned that life was not a guarantee and was not to be taken for granted. All of this happened because of Kennedy! She had the uncanny ability to make you step back and not allow yourself to get caught up in the hustle and bustle, to slow down and smell those flowers,

At just 2 ½ years old - she accomplished more in her short life then I have in mine. I was her Mother. I was supposed to teach her, guide her through life and provide her with the foundation to grow into a strong and beautiful women, but instead she taught me – patience, how to embrace life, to rejoice in even the smallest of achievements, to approach challenges and mere impossibilities with the attitude that nothing is impossible. She had the uncanny ability to make me step back and not allow myself to get caught up in the hustle and bustle, to slow down and smell those flowers, and to truly love without limitations.

We have been dealt a devastating blow to our lives and we may be experiencing the absolute worst that life has to offer, but Brian and I always try to make the best out of any situation. There are really two choices we all have in a situation like this one – we can wallow away in self-pity, doubt, anger and sadness or we can rise above the situation embrace the circumstances that were bestowed upon us and accept the things that we cannot change – we choose to live and live like we had never lived before We celebrated and rejoiced in Kennedy’s life. We turned even the most negative of circumstances into a positive and we smiled, laughed and really just embraced our life together as a family!

If I was asked this question once, I was asked it a million times over, “knowing what you know now would you do it all over again” The answer is unequivocally without hesitation – yes! I would re-live the pain and heartache just to have known, loved, and cared for Kennedy. Very early on we decided to live life according to the way Kennedy wanted to live. We relinquished control and handed the reins over to Kennedy very early on. This was her journey and we were there by her side every second of everyday to support her, comfort her, care for her, and love her in every way possible.

I would have to say that the outpouring of love and support that our family has received in the last two and a half years really leaves me speechless. Kennedy has forever changed my life. Moreover, the impact she had set upon others is profound and nothing short of amazing. Even though she was unable to talk, her presence and innocent soul has forever left an impression on our lives that will last a lifetime!

To my husband Brian – what can I really say to you besides thank you for being there. You played such an instrumental role in allowing Kennedy to live such a wonderful life. Kennedy has brought so much joy and love to our lives and has brought us so much closer together as a couple. The sacrifices that you made were all done with your family’s best interest at the forefront. She has made you into one of the most selfless persons that I know. Given our state of affairs I do not know many men that would have stuck around and would have done so with such strong convictions for your family’s needs and well being. You allowed me to quit my job, to stay home and care for our daughter, you did side jobs to make extra money, you came home daily after a long days and then cared for Kennedy to give me some time to myself, and I can remember countless evenings where you stayed awake with Kennedy late into the wee hours to allow me to sleep and then woke up the next morning to do it all over again. Kennedy was so blessed to have you as her daddy!

Finally, I prayed hard over these past few months that when it was time for Kennedy to leave us here on earth she would go peacefully in the presence of her family embraced in my arms. God and Kennedy worked together in such harmony and blessed me with an amazing end to an incredible journey. So I am going to ask God for one more thing. When my time comes and I get to see my Kennedy again, I’d like her to be 2 ½ years old and I’d like to be 27 again because I want to be able to pick right back-up where we left off. Sitting in a rocking chair with Kennedy in her favorite position on my chest. That would be a perfect way to begin eternity.

A Celebration Fit For A Princess

2011-01-24T14:21:00.000-08:00

Wednesday, January 26, 2011

So Kennedy's Memorial Service was two and a half weeks ago and I can recall the service with such clarity like it was yesterday. The day after Kennedy passed away one of my really good friends Jennifer Bagwell (Kennedy's personal photographer LOL) called me to ask if I would allow her to plan and organize Kennedy's memorial service. For most of you that know me and those that may not, I kind of consider myself a little bit of a control freak and am slightly OCD - I am a take control kind of person. My normal reaction would have been to politely decline and take on the project myself. Partly because of my personality but mostly because I don't like to put others out - I don't want to be a burden. However, the day Jen called me to ask about planning the service I immediately replied with a huge sigh of relief, "yes I would honored and eternally grateful if you would take on this overwhelming task".

Kennedy's service was absolutely perfect! No detail was overlooked. It was bright and cheery. There were hundreds and hundreds of flowers. Jen made an amazing three tiered centerpiece consisting of large cylindrical vases filled with water and orchids. There were also two personalized monogrammed banners which were also very bright and colorful and a wishing tree that allowed people to leave personal messages Kennedy. Furthermore, the tables were covered with bright bubble gum pink tablecloths and adorned with gorgeous flower centerpieces and finished with individually filled mason jars of peanuts (of course my favorite finishing touch). The service was so appropriate and could not have been a more perfect way to honor our little Kennedy. It was definitely a party fit for a princess.

The service started with an amazing 15 minute slideshow that Brian and I put together. It was a very emotional yet fulfilling project for us to do. It was so nice to look back upon our daughters two and a half years and to know that she lived one hell of a life. I am still trying to figure out how to post the slideshow to my blog. It was very important to me to have someone who knows our family and who knows Kennedy and her incredible journey to lead her memorial service. I was honored when our friend Pastor Rod agreed to lead Kennedy's service (he was the person who blessed Kennedy when she was just weeks old in the NICU @ Loma Linda). Rod did an amazing job. He kept the mood up beat and very positive - he led the service the way we chose to live our lives.

After Pastor Rod spoke I got up to say a little bit about Kennedy's impact on myself and the rest of the world (I will post my eulogy another time). I was left speechless when numerous family and friends got up to speak. It was so incredibly touching and truly was an honor. Listening to the words of others really reaffirmed Kennedy's purpose and meaning in this world and illustrated what an impact she has had on so many. It truly was a celebration fit for a princess.

(A memorial table I set up at home with items from Kennedy's service)

Kennedy's Memorial Service Program

2011-01-16T23:02:00.000-08:00

Sunday, January 16, 2011

Kennedy's service was absolutely amazing. I will tell you all about it tomorrow. In the meantime attached is a copy of Kennedy's Memorial Service Program.

Kennedy Mae Bonomo's Memorial Serivce

2011-01-10T22:39:00.000-08:00

Monday, January 10, 2011

Kennedy Mae Bonomo's Memorial Service

Date: Friday, January 14, 2011

Time: The service will begin at 12:30 pm and the reception will follow immediately after at the same location as the service

Location: Located at Central Park (Lewis Community Center) in the Rancho Cucamonga Hall

11200 Baseline Road, Rancho Cucamonga, CA 91701

909) 477-2782

This service is open to the public and I would like to invite anyone that would like to attend to please be there. Brian and I want this to be a huge celebration of Kennedy's amazing life. She has changed my life in such a profound way and I know that she has touched the lives of many others!

An Angel Earned Her Wings

2011-01-10T22:08:00.000-08:00

Monday, January 10, 2011

Heaven has earned the most beautiful, perfect angel on Saturday at 5:30pm. Kennedy is free and watching over us from above. In typical Kennedy fashion - she has her own agenda and was sure she left this world the way she wanted too, in the arms of her momma! Kennedy had been having an amazing week after her Neurologist appointment. The Ativan really seemed to be doing the trick. Kennedy was happy and the most talkative she has ever been. She spent the night at her Grammy's and Grandpa's house on Thursday night because I had an OB appt. first thing Friday morning. My mom said Kennedy was watching bugs bunny with my dad and appeared to be in a great mood. She slept amazing that night and was up and alert Friday.

Brian and I went to pick her up from my parents around 1pm. My mom mentioned Kennedy was kind of quite Friday afternoon but was really content. We loaded her in the car and headed home. Kennedy was talking away in the backseat. We spend the rest of the afternoon cuddling with our baby, as we did each and everyday. Friday evening we laid Kennedy down in bed around 9pm and Brian and I proceeded with our nightly routine and climbed into bed about 9:30pm. Kennedy was sound asleep - which is very unusual. First she never goes to sleep before midnight and secondly she never falls asleep without us in bed. I didn't think anything of it - I climbed into bed grabbed her hand and fell asleep. We woke up around 9 and Kennedy was still asleep. A little peculiar but again I didn't put much thought into it. I just figured she has had a rough couple weeks (excluding Tues. Jan 4 - Thurs. Jan 7) so I assumed she was trying to catch up on some much needed sleep.

My parents came over Saturday around 11:00 to help us start setting up the baby's room. I periodically poked my head into our room to see how she was doing as sometimes she wakes up and just lays around. She was still sleeping so I let her be. She finally woke up around 1pm. My dad held her for about an hour while we finished up the room. Then I gave her a bath and made her all fresh. After her bath her and I sat in our favorite recliner for a couple of hours while she laid quietly on my chest. She became kind of congested so I suctioned her and laid her down figuring I would just change up her positioning.

We were having a BBQ that evening and Kennedy's godparents (Derek and Jen) and our other really close friends Andy and Sarah showed up around 4:30pm. Brian began cooking dinner as i sat next to Kennedy on the couch with my girlfriends talking about Kennedy (as usual - it is one of my favorite things to do). I got up to show Sarah the progress on the baby's room and my dad called me back into the living room because he wanted me to hand him Kennedy. I picked Kennedy up and passed her off to my dad. As soon as my dad got her he made a comment that he didn't think she was breathing. I grabbed her out of his arms and the rest is history....The amazing thing was that she was fine while she was laying on the couch sating in the high 80's. She was waiting to be in our arms where she was most comfortable and at peace. There was no struggle or fight. She was at peace.

Kennedy left this world when she was good and ready. She was tired and put up one hell of a fight. She was sure to leave this world in the presence of the most important people in her life, her Mom, Dad, Grammy, and Grandpa! After her passing I held her on my chest in her favorite position and she looked like the most perfect beautiful angel I had ever seen. She was amazingly beautiful and was at peace.

Fear

2011-01-06T11:15:00.000-08:00

Thursday, January 6, 2011

Would it be safe to say that the last several months of my life I have spent crippled in fear? YES! Kennedy's condition is progressively getting worse and thoughts of her eminent death are always in the back of my mind. Yes, I fear my daughter and our families circumstances.......

I fear the uncertainty of her life
I fear that while I sleep my baby will leave us for heaven and I will not have been there for her last minutes
I fear that Kennedy will not be here for the birth of her brother
I fear that Kennedy's death will forever change who I am - to the point where myself or people around me will no longer recognize who I am anymore
I fear that I will not know how to function without my daughter
I fear that Kennedy' death will destroy my husband and my father
I fear that I have gotten in over my head with the upcoming arrival of our son - can I do it?
I just overall fear my future..

You may wonder what is with all this talk of death. The death of my daughter is eminent. I do not know when or where it will occur (oh the proverbial grey area I so love - not) but it will happen and unfortunately for us, it is sooner rather then later. Kennedy has not been the same since October. We are witnessing a heinous disease destroy our daughter before our very eyes. It has taken away so much - it has wreaked havoc on her tiny body and it is just getting worse and worse.

We met with our amazing Neurologist this week and I think we have come up with a solid plan to lesson Kennedy's agitation and keep her more comfortable. Kennedy has been battling with increased seizure activity the last couple weeks (as a good reference point she has not had any seizure activity that we were aware of in over 6-9 months) and has become increasingly more irritable on a daily basis. We brought another seizure medication onboard (she is now taking a combination of Keppra and Lamictal) and so far the two seem to be working together cohesively and Kennedy has been seizure free since the week prior to Christmas. Treating the agitation becomes a little more tricky. Due to Kennedy's low muscle tone and decreased respiratory drive we have to tread lightly when trying to prescribe sedatives. As of now Kennedy is starting an extremely low dose of Ativan which is meant to try and relax and relieve her agitation. With such a low dose, it leaves us room to adjust the dosage if necessary.

Well enough with this depressing medical mumbo jumbo. Below I put the rest of our 2010 Family Pictures. It will probably be one of the last photo shoots we have before our newest addition arrives at the beginning of May. To see more of our amazing photographers work check out her website here.

Drum Roll Please....

2010-12-12T13:28:00.000-08:00

Sunday, December 12, 2010

(Bonomo Family - Christmas 2010)

Before I get to the good part - A little sneak peek at our 2010 Christmas Pictures. As most of you know we have the most amazing friend and photographer - Jennifer Bagwell. She has such instinct for photography and she is absolutely amazing with Kennedy and all of her special needs. She is always going out of her way to accommodate our family. Jen remains one of Kennedy's biggest advocates. She is always lending me an ear when I need to vent or just talk out my struggles and for that I am forever grateful. She is never judgmental and is always telling me how amazing and inspirational I am, which I won't lie is so nice to hear at times. She even named her daughter after Kennedy - Isabella Kennedy Bagwell. Anyways check out more of her work by clicking here!!!! Our pictures turned out amazing - I will post the rest of them in another post.

For the longest time Brian and I have battled with the decision of growing our family. Due to the fact that Kennedy's disease has a 25% reoccurrence rate we felt torn. We knew we wanted to expand upon our family, but also knew the inherent risks that would lie ahead. We did not want to bring another baby into this world that would be afflicted with same heinous disease as Kennedy! With a clear heart we could not consciously go ahead knowing the potientially negative outcome that may result.

We pondered and pondered for what felt like forever. Not only would the decision to have another baby affect both of us individually, but it would also affect Kennedy and our entire family dynamic. Could we handle it? Would it be feasible? Would I be asking to much of my husband? The questions continually flowed through my brain. It is times like these that I wish there was some sort of crystal ball I could ask. So I did the next best thing - I looked within and to God for guidance.

We finally decided to go for it! We knew that adding to our family was very important to us. The fact of the matter is - we had Kennedy because we wanted a family and just because Kennedy has some special needs it does not take away from our initial desires of wanting to grow our family.

We are so incredibly elated to announce that Kennedy will be a Big Sister!!! We are anticipating the arrival of Kennedy's Baby Brother around May 8, 2011. Words can not describe the emotions that I have been overcome with in the last 5 months since I found out I was pregnant. I am ecstatic that Kennedy will be able to take on the roll as big sister. We are anxiously awaiting the arrival of our little bundle of joy and are accepting of the impending challenges with open arms. Because we do not know with 100% certainty that Kennedy has Leigh's Syndrome (doctors have been unable to confirm diagnosis via blood) we will not know if this baby will be afflicted. At this time I put all my faith into the Lords hands and hope and pray for the best. I do not have any inclinations or instinctual feelings that anything is wrong at this point but I approach this as I try to approach everything else in my life, full of positivity and optimism.

(Our newest addition - Baby Boy Bonomo due May 8, 2011)

A New You

2010-11-28T16:53:00.000-08:00

Sunday, November 28, 2010
Life is ever changing. It becomes very hard to get accustomed and develop a routine when what you thought was "normal" yesterday has become a thing of the past twenty-four hour later. We have experienced a rough couple of months. Back at the end of September Kennedy was becoming very irritable, crying non stop, and showing signs of respiratory distress. It appeared like we were in for the long haul. We immediately made an appointment with her Pediatrician and were told based off Kennedy's increased irritability, breath sounds (wheezing and crackling), and green secretions - Pneumonia was a brewing. We were prescribed antibiotics and some inhaled steroids with the hopes we could kick this before it got out of control.

It seemed to take about five days before Kennedy began to feel a little better. I was in shock how fast we were able to get this cleared up - or so I thought! Several days later she took a downward spiral. She was having severe chest retractions (which for a child with no muscle tone is almost impossible to do) and her saturations were holding steady in the low 67-71 range. To put this in perspective, Kennedy's normal resting saturation levels have always been 91-93. I began to panic a little. I made the call to increase her oxygen levels to 1LPM and have her on it around-the-clock.

In the meantime, I called her Pediatrician and we were able to get an appointment that afternoon. Kennedy's secretions had subsided, however, she was visibly struggling to breath, exhibiting constant grunting with every breath, extremely irritable, and looked completely wiped out. We were sent immediately to the lab for a chest x-ray which showed severe left lung atelectasis. Which just means that her alveoli had collapsed, thus allowing for inadequate gas exchange and decreased saturation levels. In addition, her left middle lung showed extreme haziness on the film, so much so that her heart was not visible through her left lung. This was a sign that the pneumonia was not cleared with the first round of antibiotics. We consulted with her doctor several hours later and were prescribed stronger antibiotics, more inhaled steroids, and a decongestant.

We discussed the plan of action should Kennedy take a turn for the worse. It is well known by all of Kennedy's doctors that we are against going back to the hospital. Under no circumstance will we ever admit Kennedy back into the hospital. We have DNR's signed and a pallate of care set forth. My doctor is extremely supportive of our decisions. In addition, if need be he could have a doctor out to our house if the situation progressed further. Kennedy follows the saying, "slow and steady wins the race". It appeared that we did it. Kennedy fought off pneumonia again (oh her poor lungs must look like a 90 year-old chronic smoker with severe emphysema).

Even though Kennedy was able to successfully overcome this bout of Pneumonia it has left its mark. Well actually, I don't know if this last sickness has left her transformed or if her overall disease has progressed more so, and thus, has left her changed forever. It is sad.....Sad to look back and see the little things she had slip away. We have watched the events of yesterday become a thing of the past. The Bonomo family has learned to adjust, to become flexible, to always expect the unexpected, and to arrive at the realization that tomorrow is not a guarantee. We are in constant transformation and at times when we feel like we can not take it any more, we are able to step back and look at our daughter and know that if she is able to wake-up and fight everyday then so can we!!!!!

I am Back!!!

2010-07-30T14:09:00.000-07:00

Friday, July 30, 2010

After taking a nearly 5 month blogging sabbatical - I am back!!!! There have been numerous reasons for my break (I will get to those in subsequent posts)! Kennedy is doing great! She is growing and has managed to stay sick free! We reached a huge milestone since I last posted....On June 3rd 2010 we celebrated one year hospital free! I can still remember the night we were discharged. Due to the persistence and little bit of convincing by Laura (Kennedy's Primary PICU nurse) and I we were able to get Kennedy discharged only 72 hours after extubation. Almost every doctor in that hospital expected us to be back within the month and others assumed we were taking our baby home to die. But true as form - Kennedy had other plans. So I would like to say again - Congratulations Kennedy you are nothing short of a miracle.

Now on to the topic I am sure you are all waiting for.....We were consulting with several doctors down @ UCSD Rady Children's Hospital back in April. We were referred to an amazing doctor - leading a world renowned Mitochondrial and Metabolic Research Center. After our initial consultation we were certain that this was going to be it. We were finally going to be given the answers we so rightfully deserved. It was two days before our appointment and I received one of the most upsetting phone calls - the hospital had lost all of Kennedy's blood and had mishandled her urine! To make matters worse the lady proceeded to ask how soon we could get Kennedy back down to USCD to redraw the labs. Lets recap here.....the amount of blood that was required in order to run all of these tests was bordering the maximum amount of blood they typically withdrawal from someone Kennedy's age. For about a month after the blood was drawn Kennedy was paying the price. She was not herself and you could tell something was wrong. She was very irritable and having a lot of breathing issues (her Pediatrician figured they probably overdid it and these were the repercussions we had to face). Lucky for us it took about a month for Kennedy's body to recoup and bounce back. In addition, the urine that was some how mishandled took me over two weeks to collect. Lets just say trying to have a two year old with no muscle tone pee in a bag is no easy feat.

We have had several (more then I care to admit) vials of blood go missing, but why did it have to be these vials??? I was absolutely devastated that this had happened to us. I am normally very good at staying grounded and not putting all my eggs in one basket but this kind of broke me. I kind of wrapped my future plans into finding out the results of these lab tests. So as it stands today Kennedy is still diagnosed with Leigh's Syndrome with Encephalomyopathy based off her MRI results, but nothing has been confirmed via DNA. We will not be re-performing the lab tests. We have accepted that we were not meant to find out.

There were so many reasons I wanted answers, but the biggest one of them all was because I really would love to have another baby. These tests results would have allowed us to know exactly what the odds were of this happening again. My husband has made it abundantly clear that under no circumstance does he want to potentially have another baby like Kennedy and I do not blame him for feeling that way. I actually agree with my husband. It would be completely irresponsible and selfish of us to bring another life into this world knowing the odds that he/she could be afflicted with Leigh's Syndrome. As it stands right now we have a 1 in 4 chance of having another baby with Leigh's Syndrome. Those are extremely high odds and if it were to happen that we got pregnant and had another baby like Kennedy it would not be fair to us, Kennedy, or the new baby. I could never knowingly bring a baby into this world and have them be afflicted with this disease Kennedy has - never! Having a child like Kennedy is probably one of the most challenging things I will ever have to deal with in my entire life. It affects you mentally, spiritually, emotionally and physically.

At times you feel ostracized. Like you exist in this world all by yourself. The last 6 months have been extremely hard for me. Kennedy has digressed - she has a lot of issues managing her secretions. I have to suction her all the time and the night times are particularly a disaster. She is up every couple of hours and has increased seizure activity during the times she transitions from being awake to being asleep or vice versa. At times I surprise myself at how well I am able to adapt on such little sleep. I guess you do what you have to do - and I would do anything for my baby!

Closet of Dreams

2010-03-24T14:39:00.000-07:00

Wednesday, March 24, 2010

We have received some exciting news in the last month. My sister is having her first baby and her boyfriend just got a job in California and will be moving down her in a couple weeks. While they are looking for a house they will be staying with us. In this exciting time in there lives I feel sadness. As I prepare my spare room for their arrival I come across the guest closet. It is never used and remains closed. Concealed behind the doors lies broken dreams, wishes, hopes, and a life of normalcy (something we do not often pay thanks for and is so often overlooked by others).

We were given no inclination that Kennedy was sick while I was pregnant. I went through my whole pregnancy being told by the "professionals" that everything was "normal". I had a typical baby shower - okay it was a big baby shower, but she was our first! I received tons of toys, clothes, baby essentials, jumper, walker, highchair, playpen, table/chairs etc....When it became apparent that Kennedy was far from "normal" we were forced to part with our dreams and aspirations we had created for our daughter. We painfully stored away all the gifts that were unusable to her (which was almost everything we received). The symbolism behind those doors is heartbreaking. The irrational side of me wanted to get rid of it all. I wanted no reminder of what I had lost and what I will never have with Kennedy. The logical commonsensical side thought towards the future and the what if's and someday' s . As usual the more rational side won out. It will always be hard to go through that stuff! But we continue to move forward and search-out the positives. I am determined that this disease will not beat us as a family. It has become an annoyance we live with daily but it will not come out on top.

We are still anxiously awaiting our follow-up appointment with Dr. Haas. Do I think we will get the results - the positive optimistic side says yes. I believe we will finally be rewarded with an answer after 20 long months of patiently wading through diagnosis after diagnosis. I know the results will tell me that Kennedy has a disease, either Leigh's Syndrome or Molybdenum Cofactor Deficiency and that it is NOT maternally inherited. On the other hand, the pessimistic cynical side (the feelings I think that most of us as a society would like to dismiss from our minds) feels there is a small possibility that the news bestowed upon our ears on April 20th will change our existence forever. Kennedy will have a maternally inherited disease and every child I ever have will be bequeathed with this heinous disorder. Only God knows but we will face April 20th with courage and strength. It is very comforting that no matter what we hear I will be supported by my husband, my mom, an amazing family, and awesome friends.

(Christmas 2009 - The Bonomo's)

The Strength of an Egg

2010-02-25T17:28:00.000-08:00

Thursday, February 25, 2010

Parents of children with cancer, or really any serious condition, are often referred to or viewed as having strength "like a rock." Albiet flattering,it isn't quite true. It is more like the strength of an egg. An egg, you ask? Yes!

If you'll think about it, you'll see my point. An egg has a polished, smooth outer appearance, with no cracks or weak spots visible. It seems almost inconceivable that the inside might not be so smooth or solid.

Most children, at some point are shown the famous egg trick. An egg set at just the right angle can withstand enormous amounts of pressure and cannot be cracked or broken. Yet the same egg, tapped gently at an ever slightly different angle, will break. The contents, once so neatly concealed, will come spilling out. The no longer perfect shell will be crushed. It looks so fragile that it seems inconceivable that it ever held any strength.

A rock, on the other hand, is solid all the way through. To break it is almost impossible. If you succeed, you will find that there is nothing inside but more rock.

It takes a lot more than pure hardness to hold the hand of hope. Parents of [medically fragile] children are not solid all the way through. We hurt, we fear, we cry, we hope. It takes a very careful balancing act to keep the shell from being shattered. "Balancing an egg" while running a household, going for doctors' visits and hospital stays, keeping the family together, and holding on to the constantly unraveling ties of your sanity can be very tricky indeed! Occasionally, the angle will be off and the shell will break, shattering hope and all the neatly secured appearances of a truly fragile existence.

Unlike Humpty Dumpty, though, parents of [medically fragile] kids will pick themselves up and put themselves back together again.

~~ by Juliet Freitag ~~

Waiting

2010-02-25T01:40:00.001-08:00

Thursday, February 25, 2010

The art of waiting......It has become a trait that I have learned to master. Waiting for test results, waiting for answers. At this time, waiting is a word that defines my life, my existence. While I lay in bed at night I eagerly wait for morning to come. Since Kennedy has been born I suffer with severe insomnia. It is so bad that I dread night time. I dread getting into bed and having to wait there for 6 hours. But why - is it the silence, the peace, the calmness? I do not know.

Maybe it is because the night leaves me weak and vulnerable. Oh the things your mind can think of when it is idle - scary! And then it hits me, my daughter is dying and I don't know when, I don't know why, I don't even know what from (still waiting test confirmation). I wait. I wait for the day when just one moment, a split second will change my life forever. It will re-write my history and leave me a changed person. So, I wait.......

All in the Name of Love

2010-02-10T10:55:00.000-08:00

Wednesday, February 10 , 2010

You may ask why we are still meeting with doctors and still trying to pinpoint what is plaguing Kennedy. I hear the comments and receive the stares more times then I would like to admit. But I stand behind our decision to fight on with our daughter. With the exception of a feeding tube, she breathes on her own and exists with this terminal disease she was inflicted with. Until she proves to me otherwise, my family and I will do everything in our means to keep Kennedy around. We have many limitations put in place for our daughter - a palette of care program setup and a D.N.R. established. To those who think I am playing god, I assure you I am not.

There must be something in the air, because it seems to be pregnancy season. As people share with me the news and excitement, there dreams, hopes, aspirations, wonder and curiosity of the new life they hold inside them I can't help, but to feel pain and sadness for myself and for my daughter. At this point in time I am unable to have another baby because of fear that I carry some maternally inherited defect that I could pass on to my offspring. This is the reason why I long to find out what is wrong with Kennedy. Her disease/syndrome holds so many answers. In essence, it is the key that will unlock my future.

Before I go into great detail about our appointment I would like to let everyone know how Kennedy is doing. She has been hospital free for over 8 months. This alone has been an amazing gift. Our family's number one goal is to keep Kennedy healthy. Brian and I could not have achieved such success with this goal if it was not for the help of my Mom! We have seen significant deterioration in the last 3 - 4 months. Kennedy is no longer able to manage her own secretions while sitting up. In addition, her seizures are back with a vengeance at night. Finally, her peripheral nervous system has become more damaged. She used to react to pain immediately, however, her reaction time as slowed immensely.

We were given this opportunity (by our Neurologist - who I think is amazing) to meet with a doctor down in San Diego. This doctor is head of UCSD's Mitochondrial and Metabolic Research Center. Dr. Haas seemed eager and willing to take on our case. He performed a very detailed examination (initial intake) on Kennedy, noting any and all abnormalities. We analyzed her current medication list and decided to add a couple more vitamins to Kennedy's Mito Cocktail. The following is Kennedy's new medication list:

Lamictal - Used to control seizures
Levocarnitine - helps to break fat from the food that we eat into energy
Coenzyme Q10 - is a fat like substance present in every cell of your body
Creatine Monohydrate - I guess he wants her to become a body builder (New Medication)
B-100 - provides certain cofactors which are important to Mitochondrial reactions (New Medication)

Dr. Haas felt very confident that our Neurologists' diagnosis of Leigh's Syndrome with Encephalomyopathy was accurate, however, he could not rule out without any uncertainty a couple other disease/defects. The two other diagnosis we will be looking at are extremely rare. There is not much research and/or case studies written on either.

A plethora of lab work was ordered and will take two trips down to San Diego to complete. We will have our first set of labs drawn on Saturday and will again travel down to San Diego the following week or two. In addition, we have scheduled our fresh enzyme muscle biopsy. As long as the lab work yields positive result(s) we will not need to proceed with the muscle biopsy.

We continue to travel down this road with positivity and optimism in hopes to find an answer. Every day I get to spend with my daughter has been a gift and I have been lucky enough to have been given 18 months and counting. And when the time comes for Kennedy to go to a better place, I will continue to forever cherish the time I was able to spend in her presence. She is worth every up and down, happy and sad emotion I have experienced - all the pain, sorrow, sadness, happiness, joy, excitement, anticipation, anxiousness etc....Being able to call her "my daughter" was worth it!

Simply Kennedy

2010-02-01T20:00:00.000-08:00

Monday, February 1, 2010

It has come to my attention that I have neglected my blog for sometime now. So I am composing a great post, but to hold everyone over until it is complete here are some pictures I had taken of my precious Kennedy. These were done by a wonderful friend and an amazing photographer - Jennifer Bagwell. You can see more of her work by going to: http://www.jenniferbagwellphotography.com/

Cold Case goes Solved

2009-12-09T10:58:00.000-08:00

Wednesday, December 9, 2009

There was a point in time that I thought we would never have answers. I had come to grips with and accepted the fact that Kennedy's diagnosis would continue to puzzle all and would remain a mystery for all time. However, I am very excited to announce to the world that Kennedy is no longer a mystery. Her once cold case has now been solved by our amazing Neurologist. It was confirmed in our last visit on Thursday, December 3, 2009 that Kennedy has a Mitochondrial Disease. In fact she has Leigh's Syndrome or Leigh's Disease with Encephalomyopathy (a condition affecting the brain and nervous system [encephalo] and muscles [myopathy]). The prognosis for Leigh's Syndrome is poor , however, it is nice to finally be able to put a name to this awful disease that has been plaguing Kennedy from day one. I will provide a detailed post later in this week about Leigh's Syndrome and Kennedy's appointment with her Neurologist. But for now here is what I think........

Hello Leigh's Syndrome welcome to our family. We would like you to leave us, however, have accepted the fact that you are here with us for the long haul. We do not fear you nor are we intimidated by you. We have educated ourselves about you and know far more then you would like us too. We have learned to live our lives in harmony with you. You will not tear down our spirits. We will continue to live on and thrive in spite of you. You actually have allowed us to live our lives in such a way that we consciously seek out joy and laughter and we strive to live each day to it fullest potential. We do not feel sorry for ourselves or for our daughter Kennedy. This is going to be a tough fight but we feel like we have already won the battle!!!

CDKL5

2009-11-30T16:14:00.000-08:00

Monday, November 30, 2009
Kennedy is now part of a Canadian Research Project that is looking into abnormalities of the following two genes: MECP2 and CDKL5. About four months ago during a routine genetics appointment our Geneticist shared information with us about an extremely rare syndrome that she thinks resembles Kennedy - CDKL5. As of right now roughly 200 people worldwide have been diagnosed with this disease. It is so rare that it does not even have a name, it is just referenced by the genes alpha numeric symbol. In order for Kennedy to be tested for CDKL5 the lab would have to first test her for MECP2 and if the test was negative then they would test her for CDKL5. So, two tests were needed to determine one diagnosis (of, course). CDKL5 is an atypical variant or mutation of MECP2 - well that is my understanding (I think I need 10 more years of schooling in order to get a complete understanding of all this genetics mumbo jumbo). So it is a sequential testing.....1st test for MECP2 if negative, then test for CDKL5.

Brian and I went home and thought about it for a long time. I did plenty of research about CDKL5 and whether or not I thought this could be Kennedy's diagnosis. CDKL5 mainly affects girls and not much is known about it. Below is a non comprehensive list of symptoms that correlate with Kennedy's current condition as I see it relating to CDKL5:

Refractory seizures (seizures not easily treated wtih meds)
Microcephaly (small head - Kennedy's is in the 3rd percentile)
Minimal or no use of hands (I think Kennedy's hands don't work due to peripheral nervous issue)
Small feet (Kennedy only wears a 2 and they are big)
Low muscle tone
Cortical vision impairment
Mental Retardation
Severe neurological impairment

The first thing we needed to do before committing to these tests was to get confirmation from our insurance company that they would cover all or part of costs incurred from the genetics testing. It took a little more then a week for them to get back to me - we were told no. As some of you may know, genetics testing is not normally covered with most insurance policies and sense Kennedy has received more then her fair share of tests that they have so kindly covered, they have pretty much decided to cease the coverage of future testing. Bummed about the news, I called the lab at the Mayo Clinic for a quote and was told that both tests would result in a grand total of $4,300!!!

Not that we place a price tag on our daughter, however, we just did not find it beneficial to fork out that kind of money on a Geneticist's hunch, especially since I did not think Kennedy had this genetic abnormality! I mean can you blame me.....There is not a high probability that this is what Kennedy has. If you have not all ready noticed Kennedy is a difficult complicated child....If you recall, the doctors were sure she had one of three Leukodystrophies (Metachromatic Leukodystrophy, Krabbe Disease, and Adrenoleukodystrophy), but when those came back negative, they were even more certain about her having Congenital Disorder of Glycosylation Type 1A. What about the pure confidence portrayed by my Neurologist that she has a Mitochondrial Disease (not sure which one, but she has one of them I trust my Neurologist)! Not to mention the countless other syndrome/diseases/disorders she has been tested for - all resulting in a negative test result. Once we put all this together we decided that it would not be wise nor financially beneficial to Kennedy or our family.

I called our Geneticist to inform her of our decision, to which she was saddened upon hearing the news. Laughing, I told her if she could let us use her insurance or if the lab would do it for free we would be there in a minute. It just did not make sense to spend almost 5K for the "possiblilty" of a diagnosis, because as you all now - if this test resulted in a negative finding we would be told that there is a new disease/disorder that Kenendy has and more testing would be needed. I just was not going to spend that kind of money for a shot in the dark.

Now back to the Canadian Research Project. Apparently the Canadian government has provided significant funds to several doctors and/or researchers to perform analysis and testing regarding MECP2 and CDKL5. So about a month ago we received a phone call from the Geneticist herself. She was very enthusiastic and upbeat on the phone, she said, "you told me that if the test was free you would do it"! Well the rest is history. We had the tests done on Tuesday, November 24th and they were sent to Canada via FedEx the same day.

The clock starts now.....4 months and counting!!!

I am Thankful for you!!!

2009-11-26T18:41:00.000-08:00

Thursday, November 26, 2009
Dear Kennedy,

It is our second Thanksgiving together and I am so incredibly thankful to be able to spend the entire day with you! I thank god every minute to have you in my life. When I reflect back on the things I am thankful for it is hard to be thankful for anything but you! Even though you are unable to move or talk to me we share such a strong connection and bond. You will only sleep if daddy and I are in our room with you and. If you could have it your way you would sleep between daddy and I in our bed every night. Nightly we fall asleep holding each others hands. You sense when you are alone and you hate it. I love watching you peacefully sleep when I wake up before you, which rarely happens because you hate to sleep.

I wanted you to know that your birth and presence in my life has made me a better person. You have made me face so many situations and emotions that WERE so outside of my comfort zone. You made me into so many things that i never thought defined me. Before you were born I was a very black and white kinda person and hated gray area's. If a decision needed to be made I needed to have all the facts/details before I would commit to anything. I never played the lottery and never invested in any high risk stocks- NEVER! I took the conservative route when allocating monies for my 401K. I hated surprises and always had everything planned out! Sometimes I was even referred to by others as having OCD - everything had its place and if I had to be somewhere at 5 I would show up at 4:45. I never took risks and enjoyed my mildly calm, routine, systematic, and sometimes boring life. Then you came along and challenged my personality and character. I am everything I never thought I was and more because of you.

I am going back to school to become an RN like your guardian angels and mommies mentors/heros (Laura, Kecia, Ramona, and Michelle your primary nurses in the ICU) and help baby's/kids just like you! You are my inspiration and no matter what happens to you I will be forever grateful!

I love you,
Mommy

New Found Freedom

2009-11-18T14:45:00.000-08:00

Wednesday, November 18, 2009
I first would like to extend a huge debt of gratitude (Thank You) to everybody that was involved in last weeks fundraiser for Kennedy. Whether it was a donation of food, time, money, supplies, equipment etc....it was greatly appreciated. Your support means so much to Brian and I. We feel so very lucky to be surrounded by so many amazing people!

We did not raise as much money as anticipated/expected, however, every little bit counts. With the money we raised I went down and purchased a transport vest so that Brian and I can now travel with Kennedy laying down in the backseat - yep, you heard me right. We can now drive Kennedy around while she lies comfortably in the backseat.

As I have talked a lot about in the last couple months, we have been unable to drive anywhere in the car by ourselves with Kennedy. If a trip with her was necessary, we both had to be in the car with her as we travelled. One of us was driving and the other person was in the backseat managing her secretions. Kennedy was miserable the entire time we were in the car. She would gag, throw up, choke, have difficulties breathing etc......It has been a rough couple months. I was feeling very seculded from the outside world and begining to feel down. I mean I couldn't do simple things like; run to the grocery store, go out with friends for lunch or dinner, enjoy an evening out as a family of three.

Well the problem appears to be two fold: (1) Kennedy has been having a lot of issues gagging and chocking on her secretions. They tend to overwhelm her and she becomes very uncoordinated and unable to handle them if she is in any position that requires her to swallow them. (2) Kennedy is unable to sit in a upright position. We have been given no explanation (par with the course), however, I feel that when she sits up it compress' her stomach and because she is extremely hypotonic she is unable to keep the flap from her stomach to her esophagus closed, thus resulting in her throwing up from the pressure.

It appears that we have reached a solution. On Monday I purchased this amazing piece of equipment that allows Kennedy to lay down in the backseat while she travels. I tried it out for the first time on Tuesday and it worked like a charm. No throwing up, no choking, no stressed out mommy, no paniced Kennedy........Freedom at last.

Fundraiser for Kennedy

2009-11-09T21:30:00.000-08:00

Monday, November 9, 2009
My good friend Shannon is putting on another fundraiser for Kennedy. The fundraiser will be held on November 11th from 4:00 - 8:00 p.m. @ Central Park in Rancho Cucamonga. If you would like to participate or donate supplies please view and respond via the evite. Or donations can be made through Kennedy's blog.

http://www.evite.com/pages/invite/viewInvite.jsp?event=QOIAIVTEZLVHLLTYPKAE&inviteId=SPYBPBQLYLGVJFWAHIOF&showPreview=false&x=425356366

Thanks in advance!!!

~ Stephanie ~

Oh, There are Times.....

2009-11-08T21:14:00.000-08:00

November 8, 2009
There are times that I wish I had a crystal ball. Times I wish I knew what God had planned for my precious Kennedy. Times I wish I could lay in bed all day and sob uncontrollably. Times I wish I could scoop Kennedy up and run away. Times I wish Kennedy was just like every other 15 month old.......But, there are no crystal balls and if I could see into the future and changes the hands of time I would be a millionaire.

The holiday's seem to drum up suppressed emotions. When I was pregnant with Kennedy I remember being so excited to celebrate things like; Halloween, Thanksgiving, Christmas, and Easter with her. I couldn't wait to see the expression on her face when she opened her first present, or found her first Easter egg. However, since Kennedy's birth the holiday's seem to be a time when Kennedy's disabilities are brought to the forefront. I try so hard to make everything as normal as possible, to provide my daughter with the appropriate experiences, but as time pushes forward this becomes ever so difficult.

I would do anything to change Kennedy's fate. To change her circumstances, but one thing I would never change and that is having Kennedy as my daughter.

Poem

2009-10-14T23:09:00.000-07:00

Wednesday, October 14, 2009

I found this poem when Kennedy was in the NICU. When I read it I felt as if the author wrote it specifically for Brian and me.

HEAVEN'S VERY SPECIAL CHILD

A meeting was held quite far from Earth!
It's time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.

His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.

He may not run or laugh or play,
His thoughts may seem quite far away,
In many ways he won't adapt,
And he'll be known as handicapped.

So let's be careful where he's sent,
We want his life to be content.
Please LORD, find the parents who
Will do a special job for you.

They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.

And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN'S VERY SPECIAL CHILD.

by Edna Massionilla
December 1981

The Roller Coaster Continues

2009-10-11T23:22:00.000-07:00

Sunday, October 11, 2009
Kennedy is doing great - well great according to our standards for Kennedy. She is still talking and babbling a lot. She does not really smile or babble in response to something or someone, but non the less she is happy as pigs in mud. Life however has become more complicated in the last three or four weeks. Kennedy's throwing up is in full swing and it is driving me absolutely nutty!!! We have changed formulas to a prescription formula and it has not helped one bit. It has become so bad that we are no longer able to drive in the car with her unless someone is sitting int he back seat with her suction machine. It sounds crazy, but whenever she is sat up it seems to compress her belly and make her throw up (our basic diagnosis - it is better then any diagnosis we have ever received). This then creates more problems because I don't have the luxury of having someone with me at all times to chofer Kennedy and I around.

This is a huge problem for me!!!! Throwing up leads to aspiration. Aspiration leads to pneumonia. Pneumonia leads to hospitalization. Hospitalization could lead to death! I am sick and tired of Kennedy throwing up! Not to mention it takes a lot out of Kennedy and I don't think it is fair. I just can't believe no one can figure out why Kennedy constantly throws up every time she is moved, pushes to go to the bathroom, burps, or her belly becomes compressed. It is just plain unacceptable that I can't get an answer.

Brian and I have decided to go elsewhere for a second opinion at Children's Hospital - Los Angeles. Hopefully it does not take us to long to get in to see a new Gastrointerologist, Pulmonologist, and Neurologist. I am looking for second opinions from the GI and Neurologist, however, I just absolutely hate Kennedy Pulmonologist so I am looking for a new one!

Growing Anxious

2009-10-05T06:51:00.000-07:00

Monday, October 5, 2009

Sooooo, it has become very apparent that flu season is in full swing. I have read and been told about many of babies/kids getting sick. I am growing more and more anxious day-by-day about keeping Kennedy as healthy as I can keep her. I feel like sickness is our enemy and we are constantly fighting a war with it. I think I might have a slight problem - maybe. Ever since I had Kennedy I worry constantly about others around me. If I go anywhere and people begin to cough, sneeze or I hear them sniffling there nose my anxiety level goes through the roof. I almost begin to panic, especially if Kennedy is with me. It is almost as if I can see the germs come out of there mouth and float in the air waiting for Kennedy and I to inhale them in - Okay not really that dramatic, but you get what I mean. I guess you can all equate it to having the new mommy syndrome. Where you bring home your new baby and are extremely paranoid about them coming into contact with anything dirty or anyone sick. You become the hand washing Nazi overnight for about the first six weeks. This is how I feel all the time - I partly blame being a NICU Mommy for so long!

I guess when you step back and look at the big picture it is extremely scary. Kennedy is already compromised or fragile due to her Chronic Lung Disease and immobility. It is just scary as hell to think something as simple as the flue could possibly kill her. We go to Kennedy's doctor this month to get her first round of Synagis (RSV Vaccine). She will receive one shot every month until April.

A Girls Worst Enemy....The Scale!

2009-09-19T18:43:00.000-07:00

Saturday, September 19, 2009
Kennedy is just like every other girl out there - she dreads the scale!! So, we have been battling the dreaded scale. Kennedy is having a lot of weight issues - in particular gaining weight (to bad Mommy didn't have this problem)! So, I initially attributed her lack of weight gain to her 5 week long hospital stay back in May, however, as of today, she weights less then she did 3 1/2 months ago. Her current weight is 16lbs 1oz - that of an average 4 - 6 month old. It is times like these that I doubt my decision to stop looking for a diagnosis for Kennedy. But then again, I come to the same realization - that even with a diagnosis there is no guarantee that anyone would even know or could explain what is going on with Kennedy.

We have seen Dr. Yanni (GI) more then both parties would like to see one another. Kennedy is having a lot of problems keeping her formula down. We have had to drastically change Kennedy's feeding regime. Currently we are feeding Kennedy continuously for 17 hours. From 5pm to 10pm she eats 50ml/hr. Then we lower the rate for her 10pm to 10am feeding to 40ml/hr. All-in-all she gets 730ml/day which is a little more then 24 ounces in a 24 hour period. Just a quick flash back - in May Kennedy was able to tolerate all of her feeding via bolus. She could tolerate 120ml/hr. This is one of the hardest things for her doctors to wrap there heads around. In the blink of an eye she has gone from eating from a bottle to not, from sucking a pacifier to not, from moving her limbs to moving nothing, from tolerating her feedings to not tolerating them at all. It is completely baffling if you ask me. It really makes it hard to get a routine going when her norms seem to be continuously changing.

We have had to switch Kennedy over to prescription formula. We are currently using Elecare, however, it does not seem to be working! Kennedy is still throwing up several times as day. However, the most bizarre part of it all is if I feed her pedialyte only she is perfect. She is able to handle the liquid and won't even as much a spit up - go figure. There are days when I wish I could just feed her Pedialyte all the time. I will give Kennedy a couple more days on this formula before I call Dr. Yanni and see what he wants to do. We have discussed a GJ tube and Nissen, however, he does not think she is a good candidate for a Nissen procedure. So now we wait and see. We have become experts at the waiting game.

1 Year in the Making

2009-09-17T23:36:00.000-07:00

Saturday, August 15, 2009

So Brian and I decided around late June that we wanted to through Kennedy a huge 1st Birthday Celebration. Not only for her, but for us too! I mean this was a huge moment for our family. We made it - I mean we beat the odds (well the odds all the doctors gave us)! I decided on a beach type theme seeing as it was summer and all and I hand made Kennedy's flip flop invitations. We had the party at my Aunt Donna's (Thank you) because my parents house was still under construction. All of Kennedy's best friends showed up - Ashlyn, Brandon, Samantha, Sophie, Fiona, Avery, Darby, Kaiti, Madison, and Antonio!!!

It was a great party!!!! We had a taco guy come in and cater everything so that Brian and I were not stuck behind a grill and we were able to enjoy every minute of Kennedy's celebration. She received some amazing presents. We even got some sensory type presents for her, which are amazing. All in all it was an amazing day! It goes to show how much support we have. We as a family are very blessed to have so many family and friends behind us in this journey.

Now to start planning birthday celebration #2 - LOL!

(Above: Kennedy's 1st Birthday invitations - which I had made)

(Above: Kennedy's candy bar)

Kennedy is 1

2009-08-13T19:50:00.000-07:00

August 13, 2009

I can not believe it my baby girl is 1!!! Who would have thought - well I did, but I know a lot of people thought she would never make it to see her first birthday. Brian and I had planned a huge birthday celebration for both Kennedy and ourselves on Saturday, August 15th, however, we could not let her actual birthday pass without having some sort of celebration.

Brian and I cooked a feast and had our family and a couple friends over to celebrate. We ate, drank, threw shoes, and socialized in the backyard all night long. When we sang happy birthday to Kennedy I became really overwhelmed with emotion. I just kept thinking, "We did it". We beat the odds. We were told repeatedly that we would take our baby home and she would never see her 1st birthday, but she did! Auntie Ash made Kennedy and homemade birthday cake/pie/pudding thing and we sang to Kennedy as loud as we could - she loved all the noise and stimulation! Her eyebrows were raised as she looked around. It was a night I will never forget!!!

Happy Birthday Peanut!!!!!!

Happy Birthday

2009-08-13T08:22:00.000-07:00

Thursday, August 13, 2009

Dear Kennedy,

One year ago today we welcomed you into this world. I never could have imagined how much our lives were about to change. Your daddy and I couldn't wait to meet you. I was wheeled into the operating room for a planned c-section. I was really nervous and uneasy the night before about your arrival, but I felt at peace and calm that morning. You were born at 9:39 a.m. weighing 5 lbs 14 oz and were 17 3/4 inches long. You didn't cry when you were born - the NICU team was called to the room and you were whisked away. I got to see you for a split second and kiss your forehead. At that point I would have never imagined in my wildest dreams what we as a family were about to endure. I didn't get to see you again until the next morning at 6:00 a.m.

I often hear the statement, "if only you could go back in time". Well if time travel was permitted I would not change one thing. I know I say this all the time but you make me a better person. I even see it in your daddy. He is more caring and understanding. His eyes light up at the "little" things in life that matter. At night you guys lay in bed and daddy holds your hand until you fall asleep. He would do anything for you. Most daddy's in our situation would have left by now. But not our daddy - he is in this for the long haul, for better or worse.

This road we are traveling down is a rough one, full of many bumps and unexpected holes, but you are riding through life amazingly well. I never would have thought I would get to see you smile or hear you babble or celebrate your 1st birthday. You are a miracle! I love you more then anything in this world.

We love you Kennedy!

Love,
Mommy and Daddy too

The Calm Before the Storm

2009-08-12T21:27:00.000-07:00

Wednesday, August 12, 2009

It was a year ago today and I can remember it like it was yesterday (I actually don't think I will ever forget this day) it holds a great deal of meaning to me - this night has taught me many lessons! Brian and I are anxiously awaiting the grand arrival of our little girl Kennedy. My in-laws are down from Colorado to meet their new Grand baby, I had called all my family to tell them to be at the hospital no later then 9:00 a.m. in order to meet Kennedy, all of our bags are packed, the house is immaculate, the cradle is set up right next to my side of the bed, etc.....

Brian and I are laying in bed trying to get some sleep. This will be our last night together as a family of 2! Tomorrow at 6:30 a.m. we are scheduled to be at Queen of the Valley Hospital for a scheduled C-section.

As I lie in bed I can't help but shake this uneasy felling. I shared my feelings with Brian who just continued to tell me that it was nerves. But I knew differently.....Let's recap - Kennedy was initial due on September 15th, however, at my 8 month appointment my doctor had moved up my due date up one whole month after a scheduled ultrasound. Kennedy's head circumference was measuring that of a baby due 4 weeks earlier. We were then told that my due date would be moved up a month earlier to August 15h). Two weeks later I was scheduled for another appointment. My Dr. performed another ultrasound and delivered the same due date of August 15th using Kennedy's head circumference. In addition, I was told by my Dr. that Kennedy was measuring roughly 10 lbs. After this appointment we scheduled my C-section for August 13th because Kennedy was still breached.

The four weeks prior to Kennedy's birth were filled with a lot of uneasiness, doubt, and worry. I used to tell Brian and my family all the time that something was wrong. Kennedy was not ready to come out. She was going to be small. They used to think I was crazy!!!! They would say, "look at you - you are huge" or "your doctor wouldn't tell you she was ready if she wasn't". No matter what anyone said I couldn't shake this feeling that everything was not going to be alright. But what was I supposed to do??? I mean a person who went to school for medicine, someone who has delivered hundreds or thousands of babies (of whom five I know personally) was telling me everything was fine. I couldn't very well tell him he was a liar or that Kennedy was going to be small when he says she is going to be big.

Call it mothers intuition - I just knew something was wrong. The day before my C-section I laid in bed in the dark worrying about what tomorrow was going to bring me. I was excited to finally meet Kennedy but I had a very unsettling feeling. I woke Brian up a couple times and told him that I didn't want to go. I asked if he could call and cancel. He told me that everything was going to be OK and that I was just nervous. He laughed and said, "we need to get some sleep, this is going to be the last peaceful night was have in a long time"....Oh boy, he sure did not know how spot he was!!!

Sea World

2009-08-06T20:50:00.000-07:00

Thursday, August 6, 2009

A couple months ago my family from Utah and I planned a trip to Sea World sometime at the beginning of August because they all were going to be down in San Diego for a family vacation. We decided on a date earlier in the week and I was anxiously looking forward to Kennedy's 1st visit to Sea World. I went down to San Diego with Jen and her son Brandon, Breanna (the tag along) and Kennedy and I! We met up everyone early in the morning and had a blast all day long.

This was a very sensory filled day for Kennedy. She saw Shamu, touched Sting Ray's and starfish, had her picture taken with Elmo and Big Bird, went through the shark reef and saw a show called Cirque De Le Mer. She really seemed to enjoy herself. She was very alert and even cracked a smile. It was so nice to spend the day with my family and friends (wish we could do this more often).

The tickets we bought let us go back one more time for free....so I can't wait to go back with Jen and Brandon and hopefully Brindle and Sophie to have another fun filled day in San Diego!

***** Mandy e-mail me the pics you have so I can post one of all of us together - I have no idea why I didn't take one :(

(Above: Kennedy and I getting ready to watch Shamu)

(Above: Kennedy and the starfish)

(Above: Kennedy loved touching the Sting Rays)

(Above: The besties)

(Above: Kennedy and Mommy waiting for Breanna at one of her many potty breaks - LOL)

(Above: Kennedy and I don't know what we would do with out her - she is always willing to lend a helping hand!!!!)

(Above: The Foursome on one of our many wild adventures)

(Above: Elmo....Brandon's favorite - we watched The Elmo Movie about four times on the way down to San Diego =) )

(Above: Mommy and Kennedy watching the Sharks)

The Hunt is Over....

2009-07-31T20:49:00.000-07:00

Friday, July 31, 2009
So with the end of another month, so comes the end to our diagnosis hunt!!!! That is right, we have decided to search no more. Kennedy will be one year old in 13 days and for almost one full year I would say 40 to 50 well educated doctors from a well established reputable hospital (Loma Linda Children's Hospital) have tried to find out what is plaguing our precious peanut. When I think of the fact that Kennedy is still undiagnosed it drives me crazy - how is this possible? Well, I know that some diagnosis are hard to find but hell, they don't even have a clue! Ok, well we have a list of issues, i.e., seizure disorder, cerebellar hypoplasia, severe hypotonia, chronic lung disease, hypertension etc... but nothing that explains why all these things are happening.

This is something that we both have thought very long and hard about and I am very happy with our decision! To make things even better our doctors are all on our side (yes, all 7 of them). They completely agree and support our decision. They reassured me that they know how to care for Kennedy with or without a diagnosis!!! I don't feel that having a NAME will change anything about Kennedy. I don't think it will make her move or change her fate in any way. We love Kennedy for who she is and for whatever she has.

Our Neurologist is convinced that Kennedy has a Mitochondrial disease - which she has tested negative for. He explains that the lab work does not always yield accurate results and that this disease is very hard to test for. During our last visit back in early July I explained to our neurologist that Kennedy was beginning to coo and would smile occasionally when touched or talked to! He was amazed! I had to show him proof (via my cell phone) because Kennedy would not do anything while in his presence. He looked at me very bluntly and said, "That makes no sense", to which I replied, "Nothing she does makes sense". We both chuckled. On a serious note, he said that Kennedy's MRIs show that her Myelin (white matter) has severe atrophy and her brain has some evidence of degeneration. She should not be talking or smiling. According to her MRI she should only be digressing - getting worse, not better.

Another reason he thinks Kennedy has a Mitochondrial Disease is because every time she gets sick she goes from barely being sick to sitting at heavens front gates in a matter of days. He tells me that we should treat Kennedy as if she has a Mitochondrial Disease - it can't hurt. After seeing the concerned look on my face about treating Kennedy for a Disease that we don't even know she has, he interjects with a quick hypothetical......So, Kennedy's lab work came back negative for Mitochondrial Disease. Now I would advise that we proceed with further tests. I would order a muscle and/or brain biopsy. These test would tells us conclusively if in fact she does or does not have a Mitochondrial Disease. So, we find out she has this disease, do you know what the only treatment for Mitochondrial Disease is (insert long pause) Vitamins! So, lets skip all this testing and just give Kennedy these vitamins now. They can't hurt her even if she does not have a Mitochondrial Disease. Fair enough.....We started Kennedy on the Mito Cocktail about two weeks ago. I have noticed since we began this new regimen Kennedy seems more alert, her left hand is a little stronger (she was able to grasp a rattle while I moved her arm), and she is talking a little more. Great progress!

As mentioned earlier Kennedy will be 1 years old in 13 days. This is a huge victory for her. She defied the odds and proved all those doctors wrong that told us she would never see her first birthday. Kennedy is getting her 1st Birthday pictures tomorrow. You can see some of our photographers work here. I will post the pics ASAP!!!!!

Simply Perfect........

2009-07-15T15:01:00.000-07:00

Wednesday, July 15, 2009

I feel like the luckiest person alive to be afforded the luxury of staying home with my daughter Kennedy. There are some days when Kennedy and I just sit on the couch all day long. We talk, play, cuddle, watch TV, and sleep together. I do not treat Kennedy very different then most of you treat your children. There are times I find myself running errands together and I catch people staring or I hear someone comment either directly or indirectly. I don't label Kennedy as a child with special needs, she just requires some different accommodations. I see a beautiful girl who is a spitting image of her daddy. She has gorgeous red hair, fare skin, and mesmerizing blue eyes.

Kennedy has a great life in spite of the cards she was dealt........She is in no pain, she looks around the room in utter amazement, she now recognizes our voices, she coo's, smiles.....I am still not sure why Kennedy was created this way, but what I do know is that she was handmade specifically for Brian and me.

Even though Kennedy can't move, sit up, walk, crawl etc......I feel blessed every day to have her in my life. She has taught me so many lessons in such a short period of time. She has made me a better person; more caring, understanding, patient, wiser, etc.... I'm thankful for every single second of every day that I have with her.

We continue to stay very positive and upbeat, treating each and every day as a new adventure.

Nephrologist

2009-07-14T22:47:00.000-07:00

Tuesday, July 14, 2009

Yesterday Kennedy had her 1st of several appointments scheduled for the month of July! We went to see her Nephrologist Dr. Cutler (who by the way we love, well.....we or I, love all of Kennedy's doctors - lucky us).

We missed most of Kennedy's appointments while she was admitted to the PICU for pneumonia. So it has been a nightmare rescheduling all 7 of her specialists! Her blood pressure has always been a topic of concern for me. I am always so unsure about giving Kennedy her medications because we do not monitor her pressures at home and there are really no visible signs to say that her pressures are too high. Every day I just give Kennedy her Captopril and Norvasc as scheduled and hope for the best - Geeze! So, needless to say I was anticipating a blood pressure reading and to my surprise it was NORMAL!!! Yippie - 111/66. That is the best reading we have ever received in all 5 visits to Dr. Cutlers office.

He feels that Kennedy's Hypertension is a result of her immobility! Since she is unable to move at all and has severe hypotonia (weak or low muscle tone) that the muscles constricting her blood vessels are probably weak, thus, resulting in higher pressures. There are no other medical reasons as to why she is hypertensive. All of her Kidney tests have come back normal and her heart is in excellent condition according to her two echos.

Dr. Cutler's theory is, "if nothings broke don't fix it". Thus, the reason he is leaving Kennedy on the Captorpil and Norvasc at the same doses. Kennedy is actually weaning herself off these two medications. She has doubled in weight since she was discharged from the NICU and her doses have never changed. So as long as the doses don't increase, Kennedy continues to gain weight, and her pressures remain in the normal range, she should outgrow these two medications in six months!!!!!!

For our first of many visits in July - it was a great one! I am really able to relate to Dr. Cutler. He had a daughter kind of like Kennedy. She was not supposed to live past one and made it to eighteen. He commended me on how well I handle Kennedy and proceeded to tell me that I was very wise beyond my years. In addition, he wished more of his patients had parents like me - wow what a complement!!! One word of advice he gave me which I feel like I have really lived my life by since Kennedy's birth, "take each day as a gift, enjoy life, laugh often, and live each day to its fullest because you never know when your time will be up" His words meant more to me then I think he will ever know.

Thank you Dr. Cutler - Thank you!!!

Concert in the Park

2009-07-06T23:06:00.000-07:00

Monday, July 6, 2009

Sorry for three posts in one day but I had a lot of catching up to do! Tonight the three of us headed over to Memorial Park in Claremont to enjoy a nice evening out watching a great Classic Rock Band in the park. I packed us a picnic lunch of Chinese chicken salad and egg salad sandwiches (weird combo, but that's what Brian wanted.....)

We got there a little early and set up our spot. It was great weather outside. Kennedy loved the music. She actually just loves the outdoors! When the band started to play Kennedy was smiling and was very alert. Aunt Donna, Uncle Vince, Nick, Janelle, and Ashlyn met up with us shortly before the show began. It was a great evening. We will be doing this again every Monday night through out the summer if anyone wants to join us!

Kennedy's 1st 4th of July

2009-07-06T22:37:00.000-07:00

Monday, July 6, 2009

So Kennedy and I decided to come home from our vacation early to be with Daddy!!! He was lonely without us home - probably not, but it sounded good. Brian built Kennedy this awesome wagon while we were gone. It is all equipped with off road tires and a big bed for Kennedy to relax in.

The three of us had a pretty mellow 4th of July weekend. We mainly hung out with family and friends. On Saturday we went over to Mimi's for a couple of hours and then headed to the Smiths' to BBQ and relax the rest of the evening. Kennedy made a new friend.....Nicole (Derek's Sister). Chatty Cathy was out in full force that evening. She was following Nicole's voice around and every time Nicole asked her something she made a noise back in response. Kennedy and Samantha looked absolutely adorable in their 4th of July outfits.

On Sunday, the three of us went over to Mimi's and hung out in the pool. All and all we had a great 1st 4th of July.

Campland

2009-07-06T22:01:00.000-07:00

Monday, July 6, 2009

So life has settled down since all the festivities of the 4th of July Holiday have come to an end. Last week (Tuesday, June 30, 2009) Kennedy and I headed down to San Diego to vacation with Aunt Donna at Campland by the Bay. We had a blast! Originally Kennedy and I were going to stay until Sunday, July 5th, however, we ended up coming home early to spend the 4th of July with Daddy!

Kennedy was a great camper! She loved hanging out at the beach and watching the fireworks over the bay. It was such a relaxing and enjoyable four days. Even though I have the same schedule on vacation as I do at home, being there just put everything on a slower pace. It was nice not to have anything scheduled and to just do whatever we felt like doing. We spent a lot of time eating, drinking, and socializing with family and friends - probably my three favorite things in this world to do =)

Thanks so much Aunt Donna, we had a blast!!!!

(Above: Kennedy lookin' all tan getting ready to go home and see Daddy)

(Above: Kennedy, Antonio, Aunt Donna, and I lounging on the Beach)

(Above: Kennedy knocked out with her puppy dog after a day of fun in the sun and sand)

(Above: Surfer Kennedy - Thanks Grandma Bonomo for my bathing suit)

(Above: Hanging out on the raft)

(Above: Skinny Jacqueline is always trying to make Alex and I feel like whales - LOL)

(Above: Getting ready to go on a walk along the beach)

(Above: Now this is the life)

Quick Update......

2009-06-27T20:32:00.000-07:00

Saturday, June 27, 2009

I wanted to do a quick post before we left for our 4th of July extravaganza in San Diego!!! Kennedy and I will be soaking up the sun and enjoying the water for one week!

On Thursday, June 25, 2009 Kennedy slept in her own bed for the very first time! She only woke up three times that night to be turned and each and every time she feel promptly back to sleep. She is just doing amazing! She is smiling more and more and really starting to babble.

Also, Kennedy's best friend was born today!!!! Our very best friends Derek and Jen (Kennedy's Godparents) welcomed their daughter into the world this morning. Samantha Jean Smith was born @ 12:04 a.m. weighing 8 lbs 11 oz and 19.5 inches long. The Smith family is doing great - Congratulations!!!!

(Above: Happy baby in her new baby jogger stroller)

(Above: This is what happens when mommy goes out for the night - Kennedy sleeping with nothing but a diaper on. Daddy said that Kennedy told him that she was hot! She did look pretty cute though!!!)

(Above: Daddy and his Peanut this morning in bed)

(Above: Kennedy about to cry - "Mommy - why do you have to put me in all these dresses with these darn bows in my hair"!)

(Above: Kennedy loves her new found talent - Smiling)

(Above: Kennedy playing with her teacher)

(Above: I am ready for summer - San Diego here we come!!!)

(Above: What happened????)

(Above: Kennedy looking very mischievous)

Swimming @ Aunt Donna's

2009-06-25T21:04:00.000-07:00

Thursday, June 25, 2009

Today Kennedy and I headed over to Aunt Donna's for a little swimming and lounging. I have taken Kennedy in her spa once before and she loved it! I put Kennedy in her cute Roxy bathing suit (I couldn't resist during Chick's going out of business sale) and big pink sun hat. She absolutely loved the water. She was talking and smiling up a storm. I kept her in the water for about 45 minutes then she hung out on the lounge chair the rest of the time. We are getting prepared for our big vacation next week to Campland in San Diego for July 4th - Plus, I needed to start working on some sort of a tan, because God knows tan fat looks way better then white fat!!!

R.I.P. NANA

2009-06-25T10:23:00.000-07:00

Thursday, June 25, 2009

Last, Tuesday June 16, 2009 Kennedy's Great-Great Grandma (Nana) passed away. She was 82 years old - and a hell of a good crossword puzzler! She had 4 children, 17 grandchildren, 17 great grandchildren, and 2 great-great grandchildren.

Yesterday, Wednesday, June 24, 2009 was her funeral. Again, another bitter sweet moment for me. As you hear from most people during these kind of tragedies, why does it take "these circumstances/death" to get all your family and friends together.

Kennedy and I had a great time - we were able to see our family from Utah! Matt, Micheal, Aunt Kathy, Aunt Lynette it was so damn good to see you guys. I have missed you so. You have know idea how much I appreciate all of your prayers and e-mails filled with positivity and loving words. Jamie and Mandy - I can't wait to meet you guys. Kennedy must have loved seeing you yesterday because she was a chatty cathy. She was smiling and socializing up a storm (she must take after her Momma)!

Well we look forward to hanging out with you guys in August and Matt your wedding in September is going to be awesome!

I have included some pics over the past two years that I found of Nana......We will miss you Nana!

Bitter Sweet

2009-06-22T09:36:00.000-07:00

Monday, June 22, 2009

So this weekend was extremely busy. The three of us were constantly on the go, which isn't necessarily a bad thing. Saturday the three of us went to a funeral for a friend of Brian's. Yes I brought Kennedy - I had no choice, there was nobody I could leave her with, but happy to say Kennedy was on her best behavior. Not a peep out of her the entire service!

To me this funeral was bitter sweet. To tell you the truth, the next funeral I thought I would be attending was the one for my precious Kennedy! Furthermore, I feel that this road life has brought me down has made me a bitter soul at times - which I hope is just a temporary emotion. It was hard for me to sit at that funeral and look around at all those crying people and feel sorrow or empathy. Globally, I was sad for their lose, but I could not help but feel like the pain I feel inside is so much worse - the road my family and I are traveling on trumps everything. It is hard to mourn, feel sadness, exercise empathy, or show compassion to others in these times when it feels like you are still mourning and feeling sadness for yourself (sorry for the pity party).

Moreover, Kennedy's great great grandma (Nana) passed away last Wednesday and again the sadness I felt was minimal. Am I cold hearted? It is hard to morn the loss of someone who has actually lived life. Both people were able to walk, talk, ride a bike, experience a first kiss, graduate high school, fall in love, get married and start families. It is moments like these that I would give my own life in order for Kennedy to experience. I hate that I feel this way, but I don't know how to get around it. I just don't feel sadness for other people right now - I guess I just feel like what I am going through is worse then anybody else (pathetic, I know).

Please do not judge me to critically - trust me I am a fun loving, loud, sometimes obnoxious, sweet, caring, give the shirt of my own back kind of person. I just need to learn how to overcome this sadness in my life. I know that my life has already changed, but I am most scared that his situation will change the person I am (the person that everyone loves). I am not looking for anyone to feel sad for me, because I KNOW that Brian and I were chosen for a reason to be Kennedy's parents and I would not have it any other way. Every day I discover or learn something new about myself, my relationship, my husband, my family, my friends, the medical field, and people in general that I would have never known if it was not for Kennedy.

Nothing Short of Miraculous

2009-06-16T10:02:00.000-07:00

Nothing Short of Miraculous

I know, I know.....It has been a long time since I have blogged, but boy have we been busy. I have spent the last week trying to get our life back on track - Grocery shopping, bills, organizing, laundry, cleaning, learning our new routine with Kennedy, etc.....

On to more important things - KENNEDY! She is doing amazing! We have been home for exactly two weeks and Kennedy has been "wowing" me in some many ways. We do have some new equipment at home, more precautionary then anything - we were sent home with an at home suction system and oxygen for Kennedy to wear at night while she is sleeping. In addition, we have changed up her feeding regime in order to avoid any possible risk of aspiration due to food intolerance and/or spit up. She is on continuous feeds from 10 pm to 10 am and then has three small feedings throughout the day. This new schedule is working out really nice for the three of us. Kennedy has not spit up once and it gives Brian and I some more flexibility in the day - it makes planning outings way easier.

Kennedy was extubated on Saturday, May 30th and we never looked back. She was placed on nasal cannula for 12 - 14 hours post extubation at 1/4 liter and then was taken off nasal cannula the very next day - SHE DID IT! She is amazing! I feel so honored to call Kennedy my daughter. As usual the doctors came by and were amazed that Kennedy was doing so well. As we all know, everyone was counting her out about a week prior, but not me! I was not about to count Kennedy out until she was out. I stayed positive and up beat, because I am a firm believer that Kennedy can sense your mood and her surrounding atmosphere. From the day she was born I had a "no crying" rule set forth, that stated no one was to cry at Kennedy's bedside. She is fighting a tough battle and does not need to be surrounded with tears and sadness. When we are by her side she needs to feel positivity, happiness, and love! She needs to know that there is a reason why she is fighting. Attitude and positivity are everything - if I walked into Kennedy's hospital room acting exactly how I felt I would never want to step foot through her door, I would want to run away hide in a corner under the covers.

Now that we are home Kennedy is surpassing all my expectations. She is smiling a couple times a day. In addition, she is starting to babble (she makes repetitive vowel sounds over and over). That's right folks - Kennedy is babbling and smiling!!!! It may sound weird but she is actually doing the best she has ever done. She is not moving any more but her mind seems more on point. She is also not looking up anymore. She is making eye contact (periodically) and will focus and watch the TV.

We have yet to see any of her doctors since we have been discharged, we missed most of our appointments while we were in the PICU, and rescheduling has been oh so fun. I mean, really, how can they booked out 'til August and why do I have to sit on hold for over an hour and still have nobody pick up the line??? I am very anxious to see Kennedy's pediatrician - I am dying to find out what he thinks is up with Kennedy's chest. When we arrived home a couple weeks ago Brian and I noticed that Kennedy's breast bone or sternum was protruding out and off to the left side - it sounds like she has Pigeon Chest?? I have no idea, so I am dying to get my foot into that doctors office and ramble off 20 questions.

I will keep you all updated......PROMISE

Our Second Homecoming

2009-06-03T13:10:00.001-07:00

Wednesday, June 3, 2009
So last night at 11:30 pm Kennedy came home!!! It was so nice to walk in the door with Kennedy. The three of us had a great night all climbing into bed together. Kennedy is doing great. She has had no d-sat issues and her lungs sound really good! Sorry for the short post but I have someone I need to hang out with!!! I will post soon =)

Will Tomorrow be the Big Day?

2009-05-29T16:18:00.001-07:00

Friday, May 29, 2009
So tomorrow morning we are going to try and extubate Kennedy and WHEN all goes well I will be able to hold my Peanut after three long weeks. I hope to get this tube out, get Kennedy stable and discharged. We have been an inpatient at Loma Linda Children's Hospital PICU for over three weeks - and boy am I tired! I just want to get back to our "normal" life.

I will keep you all updated - Say an extra prayer for Kennedy's strength and lungs tonight.

If you don't have anything nice to say don't say anything at all

2009-05-21T20:42:00.000-07:00

Thursday, May 21, 2008
I absolutely love being a blogger! I love maintaining my daughters blog and being a blog follower. It is such a nice medium to share your life with others. I know that my blog allows people a snapshot into my life, but that's all it is - a snapshot. I understand that people may have their own opinion about what I do with regards to Kennedy, however as our mothers used to say: "if you don't have anything nice to say, don't say anything at all"!!!! I was blindsided earlier this week with a nasty e-mail from a fellow blog follower. Just to set the story straight - My husband and I are doing the best we can with the cards that were dealt to us. We are doing everything we can to support and help our daughter live to her full potential. I am just not sure why people find it necessary to be so negative and evil. Brian and I were deeply offended and hurt by the following e-mail we received from cheryl4941@yahoo.com:

You don't know me, I just ran across your blog as I often look at them because of my own child I lost. It is a very hard situation and family and friends tell you what you want to hear, not what is best, because they don't want to hurt you. A nurse finally sat me down and talked HONESTLY to me about what I was putting my child, my husband and the rest of my family through. It hurt, but you know the truth hurts, but as the Bible says, it will also "set you free." Why are you doing this, more of the same over and over again, it's a life sentence. It would be different if there was light at the end of the tunnel, but you KNOW there isn't.

You say that "your daughter is the strongest person you know. You say "she has and continues to endure more pain then most people do in their entire life. She has the uncanny ability to fight and a will for life that you don't think most of us possess." It is a very sad situation, but is what you're doing best for your child, or what is best for YOU. The machines are doing the fighting, NOT her. Her will is to go home to be with our Lord, but medical intervention keeps stepping in and preventing it. She has tried to show you what she wants multiple times, but you won't let her. Why are you trying to stop this baby from being led home to the Lord, where she can FINALLY have some peace. Stop the pain and suffering for this poor poor baby. Do you know what it is like to struggle to breathe and to have air pushed into your lungs. It is horrible and you are forcing Kennedy to endure this repeatedly, as well as the pain. I understand, trust me, I have lost a baby, it is not easy. But we do it for our own SELFISH needs, not what is best for our child. I am sure she does not want to continue living in these situations that she is being forced to tolerate. It is so unfair for you to continue to put her through all this horror and pain, because you can't handle not holding her, dressing her up, taking her places and pretending everything is normal. You say in your eyes she is perfect, well very sadly, she is not and you know it and it is time you stop pretending and face what reality is. You say you worry about what you will do without her. You have fought a good fight, but she is tired and she is not here to satisfy your needs, you are here to satisfy hers. I did the same thing with my first one and finally realized after 2 years, it was the most selfish thing I had ever done. Hopefully you will find some peace and realize it before she suffers more needlessly. Let her go and stop the insanity.

I continue to pray for wisdom for you and peace for Kennedy. Good luck to you and hopefully your baby can finally rest in peace. Life does not seem fair at times, like you have mentioned "WHY ME", why is this happening to me". I believe if Kennedy were able to convey her feelings, she would be saying "WHY ME" because this is happening to HER.

I hope this hasn't hurt you too much, it sure hurt when the nurse spoke to me, but when I took the time to really truthfully and logically think about what she said, it all fell into perspective and I was more at peace with the truth and reality of the dire situation at hand. I let my child go with peace and dignity, instead of forcing her to live for my selfish needs. I can hold my head up high knowing she is at peace without pain and suffering like she went through for the first 2 years.

Peace, love and God be with you.

I don't feel that I need to justify our decisions. For gods sake - if we would have listened to the doctors advice in the beginning Kennedy would not be here with us today, which would mean that we would have never had the chance to spend five of the best months at home with her. We are doing our best, there is no book that tells you how to deal with situations like these and I would appreciate it if you kept your negative opinions to yourself. If I do say so myself, Brian and I are doing pretty damn good!!!

2nd Attempt

2009-05-21T20:35:00.000-07:00

Thursday, May 21, 2009
So today at 1:00 p.m. we attempted to switch Kennedy back to the conventional vent for the second time......Success! We have been on the conventional vent for more then 7 hours and she has yet to d-sat. The vent pressure is still set pretty high, however, she is only on 45% oxygen and she is sating 98 - 100%! We did a blood gas an hour after the switch and her results were the best so far =)

We will be an inpatient in PICU for about two weeks Saturday and we have celebrated many small accomplishments - this is her biggest thus far. Kennedy never ceases to amaze me. I can't believe how strong she is and continues to be. We still have a long road ahead of us, but we have made a huge leap in the right direction.

Thanks again for all your prayers and words of encouragement. We love you all!!!!

1st Attempt

2009-05-17T20:02:00.000-07:00

Sunday, May 17, 2009
We are still here! Spending so much time in a hospital is so exhausting. Kennedy is hanging in there. Today was our first attempt at weaning Kennedy from her high frequency vent to the conventional vent. The reason everyone contemplated weaning Kennedy was because she was doing exceptionally well the last day. We were weaning down on her settings, her x-rays were improving, and her gases were satisfactory. We tried this afternoon, however, Kennedy was not ready. She did really well for the first 30 minutes and her first blood gas looked great (best so far). Everybody in the room was in good spirits and was really cheering Kennedy on.

I almost hate moments like these - it is so hard to stay level headed and not to get too excited. You don't want to let your hopes come up to high just to watch them come crashing down. I want with all my heart and soul for Kennedy to succeed, for her to get off these machines and to go home with us. In addition, a higher level of stress and anxiety comes upon me. For the two hours she was on the conventional vent I watched her monitor and Kennedy's mannerisms like a hawk - I was on high alert. I didn't want her to fail!!!

Kennedy was having a heck of a time. We thought she was ready to move on from the high frequency, but Kennedy let us know otherwise. In good ole' Kennedy fashion, she let us know that this was not on her time and/or her terms. After about two hours we had just about maxed out the setting on the conventional vent and were forced to switch back over to high frequency. We wanted to make sure we didn't get stuck in a predicament like last week where she was crashing and once we put her back on high frequency she continued to struggle.

Kennedy is doing great now that she is back on the high frequency vent. Her edema is starting to subside and she is looking more and more like my peanut. Furthermore, her skin is holding up really well. She only has one blister (bed sore) on her belly.

I tell my daughter everyday how proud I am of her. She is the strongest person I know. She has and continues to endure more pain then most people do in their entire life. She is my hero. Kennedy has the uncanny ability to fight and a will for life that I don't think most of us possess. She is my pride and joy. I don't know what I would do if I lost her. Most of the time I forget that she has a chronic syndrome/disease. In my eyes she is perfect. I love her for everything she is! I pray day in and day out that she will pull through this. I long to hold her in my arms. It has been ten days since I last held Kennedy. I will continue to be in Kennedy's corner cheering her on. I will not give up on her.

OUR GOAL: TAKE KENNEDY HOME WITHOUT A VENT. To me this is a must in order to maintain a good quality of life for her.

From Bad to Worse

2009-05-14T17:36:00.000-07:00

Thursday, May 14, 2009
First and foremost I would like to start of this post by showing my deepest gratitude and thanks to all my family and friends - you have been the glue that has held me together. Now to more important things....Kennedy.

She is not doing so good. Yesterday was the roughest day Kennedy has had in her entire life. She was on the conventional vent and her settings where maxed out. She was at a really high pressure setting (meaning how hard the air blows into her lungs) and her FIO2 was maxed out @ 100%. This meant that if Kennedy went into distress there was no more assistance the vent could provide her. Kennedy kept her day nurse on her toes her entire shift. She did really well all day Wednesday and throughout the night, however, Thursday was a different story. Early on in the morning Kennedy was looking extremely pale, she was d-sating and her hemoglobin was very low at 6. Just so you have a comparison, the last day of February Kennedy had her Mickey Button placed and I inquired about her hemoglobin - at that point it was a 14, which is on the high normal side. Kennedy received her 5th blood transfusion Thursday morning. It seemed to work - Kennedy's color slowly came back by that afternoon.

The doctors where thinking (hoping) that Kennedy's d-sats had something to do with the fact that her hemoglobin was so low. We were all hoping and praying that after her transfusion she would begin to have an easier time breathing. However, more bad news. A chest x-ray was ordered and it was discovered that Kennedy's right lung was collapsed. Your lung is composed of three lobes and the top two were collapsed. This could also have explained the reason why she was having troubles breathing. The doctors kept Kennedy on her left had side hoping that the antibiotics, breathing treatments, chest PT, and gravity would help her lung open back up. However, this could not have been further from the truth. A couple hours later a chest x-ray was ordered and now Kennedy's left lung was starting to white out.

She was having a hell of a time breathing. The nurse and Respiratory Therapist had to bag Kennedy over a dozen times yesterday. She was d-sating down into the 40's. The vent just was not working for her - she was slipping further and further away. Every time someone would bag her, her 02 would jump back to 100%, however, as soon as they hooked her back up to the vent she would d-sat within a couple minutes. My theory as to why she did so well when they were bagging her was probably due to the amount of pressure they were able to push into her lungs every time they squeezed the bag, however, the pressure they were distributing was not good over a prolonged period of time because it could stretch out her lungs, cause lung damage, or potentially burst her lung.

The decision was made at 7 pm to place Kennedy on a high frequency vent. The difference with this vent as opposed to a conventional vent is that this machine blows hundreds of tiny little puffs of air into Kennedy's lungs, thus, keeping her lungs fully expanded. How she is able to exhale and release the carbon dioxide is beyond me. The hopes of this vent is that it would allow Kennedy's lungs to re-open. This is the last straw for Kennedy in the terms of ventilation. The doctor spoke to us and told us that it might not be a good outcome for Kennedy.

Kennedy needed to be completely paralyzed in order to be placed on this machine. It is very uncomfortable to have your lungs completely expanded and we didn't want her fighting the vent. In addition, Kennedy was placed on a morphine drip to alleviate any pain. A catheter was placed and she was hooked up to fluids since they didn't want her to eat because they were not sure how she would tolerate everything. Seeing Kennedy in this state was so depressing. She is becoming very swollen and looks so lifeless. The only movement was the shaking and the vibrating the machine did. This is no way for someone to live. By early this morning Kennedy's blood gases were beginning to look very promising. We were able to wean her to very low settings on this vent. Kennedy received another blood transfusion this afternoon - her 6th and her color is looking alot better.

Our hopes are to wean Kennedy off this vent by tomorrow morning and hope that it did the trick. If we have to put her back on it, Brian and I will be forced to make some tough decisions when the weekend commences. This is no way for someone to live. She just lays in bed lifeless. She is not able to move, feel, or control any of her bodily functions on her own. Seeing her in this state just kills me. No parent should ever have to experience this kind of pain and heartache. I just pray with all my heart that Kennedy will be able to pull through this with no additional insult to her fragile brain.

Thanks for your continued prayers - just remember you all have a part in Kennedy's recovery.

Making Progress

2009-05-12T23:11:00.000-07:00

Tuesday, May 12, 2009
So last night was hands down the worst night I have ever had since Kennedy's birth. Just a quick recap - we had a really rough day yesterday. Kennedy was intubated, her original PICC line went bad, then another PICC line was placed and that went bad, her blood pressure was sky high and then dropped dangerously low due to dehydration, and finally a central femoral line was placed and stitched into her groin at midnight. We were back at square one! Actually it felt worse then square one. I think this is because we now knew what it was like to have Kennedy healthy and breathing on her own and it was all taken away. My biggest fear was the vent. To me the vent represents everything negative about having a sick baby. It seemed like everything that could go wrong did and to top it off we were really butting heads with the all the medical staff. They are so perplexed by Kennedy that they just kept saying, "this just doesn't make sense", "why is she doing this - this is not normal", "I just don't understand". I mean did they read her chart - if so, they would have realized that nothing she does is normal, or makes sense, or is understandable. She is a medical mystery.

Last night after everyone left I was left to my own thoughts - which at times can be dangerous. I began to have a very hard time with this whole situation. I was feeling very insecure with the doctors and nurses and I felt like I was falling apart at the seams - I felt like I just couldn't keep it together any longer. I didn't know how much longer I would be able to hang - I was beside myself. I was scarred. I just wanted Kennedy home, it felt so unfair. I wanted to hold her in my arms. I could not even stand over her bed and look at her without sobbing like a baby. EVERYTHING was just getting to me. The noise of the vent as it blew life into Kennedy's collapsed lungs. Knowing that she had been sleeping for almost 36 hours without the assistance of any sedation medication. Seeing the 15+ marks left on her body from having to be repeatedly poked over in order fishing for a vein to place an IV. Knowing she was put through three medical procedures to place two PICC lines (which both went bad) and one Central Line. My chest was burning and my heart was racing....

But I am happy to say that I have the best support team behind me. Without the love of my friends and family I don't know where I would be today. Without my husband, Mom, and sister there for me last night I don't know how I would have gotten through this mental and emotional road block.

Mom - you are the rock that holds are family together. I have learned so many valuable characteristics that have been so vital in getting through this rough time in my life. You are as close to Kennedy as I am.
Ash - you are not only my sister but you are my best friend. You always provide me with such reassurance at times when I feel so lost. I love the fact that I can call you at anytime and you will sit there and talk to me for hours and hours.
Brian - Without you I don't' know what I would do. You provide me with such balance. You make me remember that we need to see the positive and stay up beat. I think you might have even taught the entire NICU that it is okay to laugh in times like these - actually it is essential for your sanity. We have grown and learned so much about one another in this difficult time. Kennedy has made us such a stronger team. If we can conquer this we can conquer anything. I love you with all my heart.

Furthermore, I woke up this morning after 3 long hours of sleep (HA HA HA) feeling so rejuvenated and ready to fight as hard and as long as I have to for my daughter. Kennedy was doing a lot better this morning. Her color is looking better, she seems very comfortable, she was taken off one of her antibiotics, she is now receiving full feeds (no more IV fluids) and she is breathing above her vent settings - which is AWESOME. I am praying for this upward trend to continue.

Again, thank you to all my family and friends for all your prayers, e-mails, texts, comments, etc...I cherish and save them all. They are a great thing to have when I am needing a little pick-me-up or when I need reassurance that I am doing the right thing.

Quick Update

2009-05-11T19:20:00.000-07:00

Monday, May 11, 2009
So I just got home after another long shift at the hospital - 37 hours and still going (God I need to sleep). Kennedy had a really rough night and day today. She has been struggling to breath since last night at 2:45 a.m. Unfortunately we had to intubate her this morning. Following intubation, she really struggled to maintain her sats and her FIO2 levels were 100% - meaning that if Kennedy were to get into any more respiratory trouble we would not be able to give her any more oxygen because she was already maxed out at 100%. In addition, she developed a fever at 3:00 p.m. Her right lung is starting to clear up, however, her left lung is starting to look a little cloudy. Her PICC line went bad after the first day - of course and then they tried to place another PICC line and were not successful. As I arrived home, I received a call from the attendee requesting authorization for a central line which will either be place in her chest or her groin.

Well I am going to get in the shower and back to the hospital I go. Thanks for all your texts, calls, and e-mails!!!

Happy Mother's Day

2009-05-10T08:13:00.001-07:00

Sunday, May 10, 2009
First and foremost I would like to start off this blog with saying that being a mom is not always what we expect, anticipate, hope or dream for - the reality is, it is a tough job. We have heard this phrase a million times, but it is so true - it is one of the hardest, most emotional, most rewarding, and most under paid jobs in the entire world, but most of us wouldn't trade it for anything. I would like to wish all the mom and mothers-to-be out there a Happy Mother's Day. Take this day to RELAX (easier said then done - I know) and spend time with the little/or big ones who make this day possible. I know for some of you this day may be hard or filled with sadness and emotion - it is for me. However, think of the positive - look past all the hurt and pain and remember the sweet times. Look deep down inside yourself and recall that feeling - to me that is the feeling if hard to describe in words. It is a feeling I get when I am holding Kennedy in my arms. It is a feeling of unconditional love. No matter what happens, no one can every take away those memories or feelings a mother and a child share.

I am up and ready to head off to the Hospital to spend this day with Kennedy but I just wanted to give everyone a brief update - complements of my husband via text message. Kennedy had a rough night last night. There were a couple scares and a lot of talk to intubation. Kennedy is having more d-sats then they would like to see. Her seizures are really making things tough for her. Apparently, every time she has one her heart rate is elevated and she begins to have drops in her oxygen level (d-sats). In addition, they are concerned with her heart rate - it is extremely elevated (running at 175 - 200 bpm, this is a typical newborns heart rate). Furthermore, her blood pressure decided to take a ride on another roller coaster. It has been up and down. Last night Brian also received the results of the Ultrasound. There was no fluid between the ribs and lungs - so hopefully a deep suction will do wonders.

The doctors came in this morning and told Brian that Kennedy is one of the most complicated cases they have ever seen - not usually comforting words, but I couldn't agree with them more. From the outside at a glance she looks like a perfectly "normal" 9 month old, but deep down she is filled with medical anomalies that no one is able to provide any insight into. It is just so crazy to truly realize how behind medicine is when it comes to the brain. It find it so intriguing and frustrating that they are able to fix, cure, diagnosis, and help with so many diseases, syndromes, disorders etc....but when it comes to the brain (the unit that gives us life) the medical field has only just scratched the surface. I mean I have seen and heard things at Loma Linda that I didn't even know existed and then I look at Kennedy and wonder why is she so different? What is it about here that leaves everyone pondering and guessing?

PICU

2009-05-09T22:04:00.000-07:00

Saturday, May 9, 2008
So if you have not heard the news, I just wanted to let everyone know that they admitted Kennedy to the Pediatric Intensive Care Unit (PICU) @ Loma Linda Children's Hospital. The reason for this visit to the ER and then subsequent admission was caused by severe congestion/cough and difficulty breathing. Starting Sunday and subsiding on Tuesday Kennedy was running a fever - nothing to significant, temperature was usually sustaining @ 101.9 degrees. Tuesday afternoon Kennedy's fever broke, however, she began to get very congested and developed a horrible cough. She had a lot of mucus and every time she would get a good cough in, she would loosen up the flem and then begin to choke because she was unable to swallow it on her own. This lasted for a couple of days, however, Thursday and Friday were a little different. Kennedy was very irritable (which is not like her) and was unable to relax. She was experiencing these horrible cough attacks, was very lethargic, and her breathing was extremely labored.

On Saturday morning @ 2:00 a.m. I just felt very uneasy with Kennedy's current state. I packed up her stuff and headed out to our second home (I can't believe that those two words are even in my vocabulary and I use them in conjunction with one another). We had to wait in the waiting room for over 2 hours - go figure. During my wait I ran into one of my friends Amber. It was great to have someone to chit chat with in order to pass the time. Lucky she was there, otherwise the admissions people @ the front desk would have hatted me - I get so damn inpatient when I am forced to wait while Kennedy is having difficulty breathing and only sating in the high 80's low 90's (thanks Amber).

Almost two hours later it was finally our turn. They brought us back and performed a chest and abdominal x-ray. Kennedy was stable at first but was just beginning to pucker out. She was just having a hell of a time breathing on her own. Our night nurse but her on nasal cannula which seemed to help for the time being. The x-rays came back and we were informed that Kennedy's right lung was completely whited out or cloudy. We were told that Kennedy has severe Pneumonia in her right lung. The doctor ordered for an IV to be started and for a full round of labs to be drawn. As time ticked on, Kennedy's condition began to worsen. She was having more and more difficulty breathing. It was shift change and the day time attendee rounded to our room and seemed very concerned for Kennedy as well. She ordered several breathing treatments to be performed on Kennedy (which didn't work) and suggested we start her on CPAP (which is a kind of ventilation machine) which forces air in the nose and thus helps open up the airway and provides Kennedy with some additional support.

The next couple hours were a blur - probably due to sleep exhaustion I presume. Moreover, one thing I do remember is that doctor after doctor kept coming in talking about possible intubation - WHAT THE F*CK! Why in the world is that word even being mentioned in my presence? They must have not received the memo about how much I hate that damn machine. To me Kennedy seemed to have distressed breathing, but she was far away from possible intubation. It was then decided that Kennedy would be admitted to the PICU as opposed to a step down unit (less critical unit) for further support and observation.

Once we got Kennedy settled and met our nurse and all the doctors, Brian and I went to grab a bite to eat - the only thing that keeps us sane sometimes (hence, our growing waistlines - haha). After dinner I went home to rest, I was completely exhausted after being up for more then 35 hours straight. My current updates via text message from Brian are that; Kennedy has a protein in her urine, her white blood count is extremely high, her right lung has severe pneumonia, she is being given antibiotics via IV, her CPAP settings are @ 40% oxygen and she is sating in the mid 90's, she is being given fluids via IV because her stomach is very distended and filled with air, and finally they ordered an ultrasound to be performed first thing in the morning to see if there is fluid between her lungs and ribs - this will help the doctors determine if they need to suction her or intubate.

I love the fact that Brian is at the hospital with Kennedy and letting me get some well needed rest at home so I can be by her bedside tomorrow and all subsequent days. However, I have developed a very weird personality trait every since I had Kennedy and was thrusted into this new life. I can't stand to be away from her when she is in the hospital. I like to know everything that is going on (that is the control freak inside of me coming out), why they are doing what they are doing (more control freak), what they are doing to improve things, what there feelings are, but most importantly I like to watch and monitor everyone and everything the doctors order and things the nurses do in order to catch mistakes, which by the way I have caught numerous - yes, you heard me, numerous. For example, this morning I caught the nurse entering the IV dose incorrectly on Kennedy's infusion pump. She was going to pump into Kennedy more then 90 mls over what the doctors prescribed, which once I got home and did a little research this could have caused brain damage if to much sodium was given to Kennedy to fast - GREAT. I don't even want to think how many times this has happened in the past, but now that I am onto their game it won't happen again on my watch.

As I sit here and type this e-mail, I can't help but feel so cheated and sorry for myself. I sit on our bed and wallow away in my tears. There are some days (today would be one of them) that I just wish I would wake up one day and this this horrible nightmare would be behind us. It is just so hard sometimes to accept the fact that these situations and predicaments we face daily "are my life". I just WISH that one day I would wake up and everything would be "normal". The word that I have to hate. What I wouldn't give to just one day wake up and hear Kennedy's voice echo down the hall. I would love to get to experience the things that all other parents get to....I imagine what it would be like to hear her babbling in her room, "MA MA MA MA" and I would walk in and she would be playing in her crib and when I walk in she would turn and have this look of pure excitement and enjoyment on her face - unfortunately I only can live these dreams through others, I only can imagine what the enjoyment would feel like through other peoples experiences. Instead day after day is hit and miss for my family. We deal with sorrow continuously and it always feels like every where you look you are reminded just how sick and far away from "normal" Kennedy really is. The things people take for granted or get frustrated about - I just wish I could have a slice of that just for one day. I just wish "this story" was not my life.

So I will celebrate my first Mother's Day in the hospital with my daughter - just as I spent several other holiday's and/or celebrations. I will keep everyone posted - Please pray that these antibiotics do there job and that Kennedy fights through this.

We love you all,
The Bonomo's

Close Ups

2009-05-05T20:55:00.000-07:00

Tuesday, May 5, 2009
I was going through some pictures of Kennedy and I could not believe how photogenic Kennedy is - Okay I know I am biased (alright, a lot biased), but seeing as Kennedy can not look at something with both eyes (i.e. camera) and the fact that she can not sit up or even hold her head up - she sure looks great in a picture. Anyways, enjoy some of my favorite close-ups of Kennedy...........

Ashlyn's Dedication

2009-05-05T13:53:00.000-07:00

Tuesday, May 5, 2009
On Sunday Brian, Kennedy, and I attended our nieces Dedication! We were so happy to be able to take Kennedy and support Nick and Janelle! Ashlyn looked absolutely adorable. She wore the same gown that Janelle was dedicated in. It was also, nice to be able to meet all the people at their church who have been praying so diligently for Kennedy!!!!

(Above: The Bonomo Family @ Ashlyn's Dedication)

(Above: Kennedy and her cousin Ashlyn - FYI when Kennedy cried during Ashlyn's Dedication, she was looking all over to see what was wrong with her - they love each other)

(Above: Ashlyn giving her ususal dirty looks)

(Above: Ashlyn and Mommy)

I HATE Seizures

2009-04-30T23:33:00.000-07:00

Thursday, April 30, 2009
Well it is the last day of the month and as I sit in bed waiting for Kennedy's feeding pump to beep at me I begin to think about the last week or so. My life has changed so much - for the better that is (I will blog about that later)! However, one thing that remains the same are these damn seizures! We are on a new medication plan - yes, you heard me....another new medication plan. For those of you who are keeping track this is the 6th medication change we have made to try and control Kennedy's seizures. And to-date we still have had no success =(

I began to notice Kennedy's seizure activity increasing about two weeks ago. Brian and I began to monitor them to ensure they were not getting out of control. They were becoming more prevalent and were beginning to wake her from a dead sleep. I called the Neurology Dept. on Tuesday, and after three subsequent phone calls, I finally got a call back on Thursday (Thank god it wasn't an emergency)! The nurse informed me that Dr. Michelson wanted to switch up her meds - which was no surprise to me. I swear sometimes I think if all else fails they just add another medication. We were going to stop taking the Trileptal and Keppra and gradually begin Kennedy on Lamictal. I was given the same old statement "We will just have to keep trying different meds until one works"! Sometimes it would just be nice if something worked the first time around. She loves being a Medical Mystery!

As I was reviewing the medication schedule with the nurse I was happily suprised to be informed that Dr. Michelson is recommending Kennedy to be on a Ketogenic Diet. This is a diet that mimics Atkins - It is very high in fat and low in carbs. It makes your body burn fat instead of carbs. Normally your body takes the carbs and converts them to glucose which travels through the body and is fuel for your brian. With this Ketoginic Diet your body is tricked into thinking you are starving thus forcing your liver to burn its stored fats. The liver converts these fats into Ketones which travel to your brain and replace the glucose. The brain then uses the Ketones for energy creating a Ketosis state. From this state your body creates it's OWN anticonvulsant which is said to treat Refractory Seizures (seizures not easily treated with medication). Dr. Michelson will present Kennedy's case and hopefully the team will accept Kennedy for this treatment. It will require a week hospital stay but it could have profound effects.

We begun our new medication on Friday at a very low dose. We are currently taking 5 mg 2 times a day and we need to be at 25 mg 2 times a day. As expected Kennedy is having some pretty bad withdrawals; sweating, fussiness, crying, irritability....As of Tuesday, she is finally coming back into her own - Thank God! The medication seems to be working so far. Her seizures are not as severe - so hopefully as we keep increasing the medication dosage each week the episodes will dissipate.

Well I guess I should get to bed - Happy Friday =)

A New Career

2009-04-23T09:24:00.000-07:00

Thursday, April 23, 2008
Well I have decided to make the big move…..With a heavy heart I will be saying good bye to Park West. My new job will be Kennedy’s full time caregiver and advocate. My life has been like a circus act since coming back to work and juggling the special needs of Kennedy….this “act” has finally posed too much for me to handle. I am stretching myself way to thin and I needed to make a change. I have been getting this gut feeling (which I don’t often get) that I needed to alter my life plans drastically and be home with Kennedy as her full time caregiver. With the uncertain future for Kennedy I just didn’t want to miss another day with her.

The diesel company next store to Park West has a marquee below their company sign – each month they put up a new quote for all to see while driving up and down Peck Road . My Ah Ha moment was reading the quote of the month, “Lost time is never found again”. So that’s it….God is leading me to be home with my daughter, so that’s what I am going to do. I have another calling in life…to spread understanding and awareness to the world regarding the life of having a special needs child. I know when we first begun this journey on August 13^th I was starving for information and to find families going through what we were going through – if Kennedy’s story could help families out in similar situations to ours and let them know they are not alone, then my job is done. Life is going to be rough “financially” but we will figure it out – we always do.

Thank you for all your love, support, and prayers J I tell Kennedy every night what a lucky girl she is – most people have never even met her, however, she is in their thoughts and prayers every day.

My Hero

2009-04-21T21:03:00.000-07:00

Tuesday, April 21, 2009
Well I have had numerous people write to me and tell me that I am there hero. To hear somebody direct a statement like that in my direction just astounds me! So this evening I sat down and really thought what the word "hero" means to me. Webster defines a hero as, "a mythological or legendary figure, often of divine ancestry, who is favored by the gods, endowed with great courage and strength, and celebrated for his bold exploits." To me, a hero isn't someone that is fictional or that was raised in nobility. A hero doesn't have to be someone considered better then anyone else. A hero is someone who has done something that she is looked upon for. Someone who does something great....not because she felt she would be praised for it, but because she knew it was the right thing to do. I to know a real hero. Her name is SHANNON CECIL!

For those of you who don't know Shannon she is a smart, beautiful, crafty, caring, loving, giving, obsessive compulsive, organized, charming, fun loving person....Whenever you are in her presence she has this glow about her and makes you feel right at home. She is always upbeat and walks with her head held high. She makes you want to be a better person and her smile is contagious. She has that zest for life that I think some of us have lost.

Shannon has been thinking about things that she could do for Kennedy (I guess making us dinners, sending Brian and I out on a date night, and welcoming us into her house was not enough - HAHA). A couple of weeks ago it came to her.....Shannon sent out the following e-mail:

Hi everyone! Let me start this by saying God is Good!!!

Are you ready for chills? Ok, so most of you know the Lord has put it on my heart to do something to help out the Bonomo family, Kennedy in particular. I've been praying for the Lord to give me ways to raise money for the medical bills and costs they have accrued since her birth. A Mother's Day Boutique was one idea, a bake sale was another, and an awesome slide show on you tube asking for donations was another. Well, this afternoon I got a call from a very good friend of mine, Rhonda McKenney who gave me the phone number for the city counsel man for Rancho Cucamonga . He is looking for someone to come to the city's easter egg hunt at central park and sale "edible" items during the hunt! He said we could pretty much do whatever we wanted. I've already talked to a few ladies who are going to help with this event and this is what we've come up with that we'd like to do:

cupcake booth
beverage booth (coffee, hot chocolate, soda, water, juice boxes)
doughnuts
EASTER BASKETS!!!

The hunt takes place from 9:00am-11:00am on Saturday morning at Central Park .

WE NEED YOUR HELP!!!

If you can help me out in any way, please let me know right now, email or call me.

I need help:

baking cupcakes, I have a very skilled "pastry chef in training" friend that has offered to come over to my house on Friday night and decorate them all, I just need the actual baked cake part
donate an already made up easter basket for us to sell (try to keep this Christ centered, he's the one who did this)
donations of bottled water, sodas, juice boxes to sell
I am going to call Crispy Creme Doughnuts and see if they will donate some doughnuts and/or give us a discount on those, does someone want to take up this job?
I need to make a banner(s) and posters explaining what we are raising money for
WOMAN POWER to help me sell all this stuff on Saturday morning! We need to get there at 8:00am and won't be leaving until around noon...

What do you think? Can you help, Kennedy really needs your support!

I just want you to know that I had nothing to do with this. This opportunity has been GIVEN to us by God himself. Prayers are being answered right here ladies. Our Lord loves this family and wants us to help him bring them closer to Him. Lets show them how God works in their lives!

Your sister in Christ,

Shannon Cecil

The bake sale was a success - Thanks to Shannon we raised over $1,700 for Kennedy! It was so awesome to see so many people come together for a common cause - people that have never even met me or my family took time out of their lives and away from their families just for us. When I saw the turnout on Saturday it brought tears to my face. To see all the hard work that was put into this event in such a short amount of time had me in awhhh. I am so thankful to have people like this in my life. I feel that since Kennedy has been born all the people that have come into my life have turly made me a better person.

I feel so privileged and honored to call Shannon Cecil my friend and Hero!!!

The adventures of Kennedy

2009-04-10T10:48:00.000-07:00

Friday, April 10, 2009
Since we found out this horrible news about Kennedy's Degenerative Neurological Disorder Brian and I decided we need to get Kennedy out and about as much as possible.

DISNEYLAND - FRIDAY, APRIL 3, 3009
Kennedy went to Disneyland for the very first time last Friday. She loved it....we rode on the Jungle Cruise, Winnie the Pooh (which she loved b/c all the bright lights), Snow White (which she slept through), The Haunted Mansion, & Buzz Lightyear Master Blasters (which was her favorite). We went with my Mom and Dad, my cousin Alex and her friend Shay, my friend Brindle and her daughter Sophie. We had a blast - I can't wait to take her to California Adventure Next.

DISNEY ON ICE - SATURDAY, APRIL 4, 2009
On Thursday night after Kennedy and I had dinner @ CPK with Jen and Brandon I got a phone call from my friend Melissa saying that they had a Suite @ The Citizens Business Arena for Disney on Ice and she asked if we wanted them for Kennedy. Of course I want to take Kennedy!!! I was so excited I could not wait to take her :) I called a couple of my girlfriends with kids and asked them to join me. We had such a good time. Kennedy was not to sure of the show during the first half....I think the noise kinda bothered her. However, during the intermission Kennedy settled down and loved the second half. She loved all the lights and noise.
~ Thank you Driftmier Family for this awesome opportunity to take Kennedy to her very first Disney on Ice Show - Kennedy is so lucky to have people like this in her life ~

ANGELS OPENING DAY - MONDAY, APRIL 6, 2009
A couple of weeks ago Brian bought us tickets to take Kennedy to her very first Angels Game. It was a big family affair.....we went with Kennedy's Uncle Greg, Uncle Chris, Uncle Chris' girlfriend & cousin Josh. We had great seats in the left field pavilion. Kennedy was all decked out in her Angels gear and she had such a great time. However, we did miss the fly over and the first couple of innings because the traffic was horrific getting into the stadium.

Back to Work I go

2009-04-06T08:26:00.000-07:00

Monday, April 6, 2009
After my three day sabbatical I am back at work. I needed that time off!! I thought I was okay to go to work on Wednesday after our devastating news, but boy was I wrong. I got up as usual at 4:30 a.m. to get ready for work. I left my house at 5:30 a.m. (on time for once) and began my long trek to the wonderful city of El Monte. About half way there I broke down. I didn’t even realize my radio wasn’t on and I began to sob. It was one of those uncontrollable cries. I pretty much had a pity party for myself. I cried out “why me”, “why Kennedy” etc…..

I feel sorry for poor Jen who got my 6:00 a.m. phone call looking for somebody to talk too – I didn’t know who else I could call that would actually be up (Thanks for listening Jen Smith). I told her how bad I felt and that I just didn’t know what I was to do. She talked to me for about 5 minutes and calmed me down. I got to work feeling Okay, I thought to myself that I would go in and get a couple things done seeing as it was quarter end and then go home. Well that didn’t happen – I walked through the door and straight into my bosses office. I explained to him what had happened at Kennedy’s appointment the prior day and then I lost it. I began sobbing uncontrollable again! I told him that I just didn’t want to be at work, my mind and heart where not there. I explained to him that all I wanted to do is be home with my baby. He gave me some GREAT words of advice and sent me on my way.

I arrived at my moms at 7:30 a.m. to pick up Kennedy. She had a very surprised look on her face when I came knocking at her door. I told her that I wanted my baby!!! Of course those motherly questions came flying out her mouth, “why aren’t you at work”, “are you sure your okay”, “did you talk to your boss, you can’t afford to lose your job”. I replied yes to all and proceeded to walk into her bedroom swoop Kennedy out of her bed and put her in my car. We arrived home and got into bed – we laid there all day. She mainly slept and I talked and cried to her. I told her everything that was happening to her and how I felt about it all. She is the best listener. When I couldn’t cry any more I finally passed out.

Boy, I wish I was in bed with her right now. It was great!!!!

MRI Results

2009-04-01T14:41:00.000-07:00

Wednesday, April 1, 2009
So.....I was trying to get this done last night but I just could not bring myself to sit down and face the facts. Kennedy's MRI results came back and they were devastating. We were told that my favorite person in the entire world has a Neurodegenerative Disease. Dr. Michelson showed my mom and I images of Kennedy's MRI so we could have a visual aid. The pictures he revealed left us speechless - Kennedy's brain was not growing and her myelin (white matter) was disappearing. At this point she almost has no more myelin left. The pictures showed a lot of spinal fluid in her brain. Meaning that as her head continues to grow her brain is not and spinal fluid is filling up the empty space. In addition, some other parts of Kennedy's brain (the basil ganglia & thalamus, which are two important structures) were showing signs of atrophy or shrinking. In addition, Dr. Michelson showed us that Kennedy's Cerebellum has not continued to shrink, however, he did show us how significantly small it is. It is about 1/6th the size it should be.

We were told that Kennedy could have one of any 10 very rare genetic diseases. Dr. Michelson said that he thought it was a Luekodystrophy - WHAT, that word again. I thought we already traveled down this road and closed that door - apparently not. I explained to Dr. Michelson that Kennedy was already tested for three different kinds of Luekodystrophies (Metachromatic, Adrenal, & Krabbes) and they all came back negative. Dr. Michelson left us in the room while he went and dug through Kennedy's extensive medical file. After about fifteen minutes Dr. Michelson was back and asked me if we ever were tested for "X" disease (can't remember name) I told him no. He proceeded to tell us that Kennedy was never actually tested for Krabbes Disease. Loma Linda filled out the lab slip wrong and the blood was tested for the wrong disease - not Krabbes.

Dr. Michelson said that it all made sense. He was pretty sure sounding about Kennedy having Krabbes Disease. He said her MRI/MRS images resemble somebody who has a luekodystrophy. In addition, the EMG she had done @ Loma Linda also showed that she had Peripheral Nervemyopathy which also is a syptom/sign of having a Leukodystrophy. We were sent over to the lab to get blood drawn for a test which I already thought was done and produced a negative result.

I wish I could go back and make yesterday disappear! I wish I had a time machine! I knew Kennedy was sick but I guess I just hoped she would live on forever with us and we would adjust our lives to meet her handicap. We would always have a "special" family but I always thought she would be a part of it. I never in my wildest dreams thought I would be sitting in a doctors office being told my child has a terminal illness. I am so sad that Kennedy will be taken from me by a disease - way before her time. It saddens me that I will never get to hear her say my name or watch her take her first steps. I don't know what I am supposed to do with out her. Now we wait and see (three weeks to be exact).....See what God has in store for my darling Kennedy.

Pictures

2009-03-25T15:26:00.000-07:00

Wednesday, March 25, 2009
So Kennedy's photo shoot @ The Picture People turned out so darn good - to bad I can't figure out my stupid scanner so that I can upload them for all to see. ARGHHHH!!!!

We got some really good picutres of Kennedy and her cousin Brennan. You can see just how much Brennan loves Kennedy!

Anyways, as soon as Brian figures out our really expensive printer/scanner/fax I will post the pics

New Medicine is a Success

2009-03-23T20:48:00.000-07:00

Monday, March 23, 2009
Kennedy's seizures were getting worse and worse. She was having more and more episodes. I had put a call in to her Neurologist to find out what he wanted us to do. At first we were told to increase her Keppra to the maximum dose allowed for Kennedy's age and weight (2ml/2 times a day), however, that did not work - no suprise there. Her seizures were not letting down. So then Dr. Michelson prescribed us a new medication to take in conjunction with her Keppra. So far so good :) Kennedy is now taking two medications to control her seizures - Trileptal & Keppra. The medication was prescribed on Friday and since then Kennedy's seizures have begun to decrease and as of today she has only had one episode!!!!!

Also, Kennedy and her cousin Brennan had a photo shoot on Sunday at The Picture People. The photos turned out great. As soon as I figure out my scanner I will post them for all to see.

Still waiting for March 31st - well keep you all updated!

More Seizures

2009-03-16T21:38:00.001-07:00

Monday, March 16, 2009
We are back to having seizures!! We were one day post Phenobarbital and Kennedy's seizures have started back up. Geeze......Why is it that the worst drug out their (Phenobarb) seems to be the only drug that is controlling her seizures? I called the Neurologist for some advice and received a very frustrating 3 part response - try to increase the dose of Keppra, stop Keppra and put her back on Phenobarb, or take her to the ER. Back to the ER - for what. They don't even know what to do with her at the ER. They just look at us with blank stares like we are a medical anomaly (which I guess we are) but who wants to be looked at like that - it is not very comforting. We have two options when going to the ER - drugs or inpatient. They will either drug her up and send us home or admitt us for more tests which will result in NO answers.....HMMMM!!!!

Can March 31st come already????

MRI

2009-03-13T20:13:00.000-07:00

Friday, March 13, 2009
So Daddy and Kennedy had a good day today. Brian took toady off to take Kennedy to her MRI so I could get caught up at work. Her MRI went great. They tried to perform the MRI without sedation, however, it was not successful. So the actual MRI took longer then anticipated because they had to place the IV and administer the sedation once they took her back.

After the MRI it took Kennedy awhile to wake up from the sedation. So now we sit and wait for the results.....Our appointment with the Neurologist is Tuesday, March 31st.

Two Peas in a Pod

2009-03-13T20:06:00.000-07:00

Friday, March 13, 2009
They can't live with each other they can't live without each other.

These pictures need no further caption.....

Photo Shoot @ Grandmas

2009-03-12T20:28:00.000-07:00

Thursday, March 12, 2009
So I always wonder what Kennedy and my Mom do all day while Brian and I are at work.....Today I finally found out - They have photo shoots. Here are some pictures of Kennedy and her cousin Ashlyn:

(Above: Right- Kennedy / Left - Ashlynn "They are so darn cute")

(Above: Best Friends)

(Above: The babies are tying to fight over who is going to be the center of attention)

(Above: Ashlyn and her cute little bunny)

(Above: That is all Ashlyn wanted - a binkie and her bunny)

(Above: Ashlyn and Kennedy in their Easter dresses)

(Above: The picture says it all)

(Above: The first time Kennedy ever wore a dress - she looks so darn cute)

(Above: Little Miss Blue Eyes)

(Above: She is thinking about cracking a smile - but nothing yet. Little does she know that her Daddy and I just want to see her smile, it would give us such hope and joy)

(Above: Oh is this shirt so true - Kennedy does rule the castle. Thanks Dee Kennedy loves these PJs)

Tomorrow is the big MRI - Hopefully they will be able to tell us something. I just hope they don't make us wait until our appointment at the end of the month.

Post-Op

2009-03-03T16:34:00.000-08:00

Tuesday, March 3, 2009
Kennedy did great today!!! She pulled through like a champ. The procedure took about 50 minutes. Dr. Yanni said placing the button went smooth. There was no need to perform any additional cuts. When everything was said and done, they wheeled Kennedy into the recovery room, and yes, she was extuabted :)

Thanks again to everyone for all your thoughts and prayers. Next week Kennedy will have her long awaited MRI/MRS!!!! I will keep everyone posted.

Surgery Day

2009-03-02T21:30:00.000-08:00

Monday, March 2, 2009
Tomorrow Kennedy will be having surgery to get her peg tube replaced with a Mickey Button. This is normally a simple procedure performed under sedation, however, Kennedy will be placed under general anesthetic and intubated (Yikes - I hate this word). The reason she will be placed under GA is because the doctors still don't trust her breathing. Due to her extreme hypotonia, they just don't know if she will be able to breath on her own while under sedation - which causes your muscles to relax. I am grateful for all her doctors. They really follow their intuitions when it comes to Kennedy, and thus far, they have never led us down the wrong path. I would rather them be safe then sorry. It is so much safer to have intubation take place before the procedure then in an emergency situation - that is when problems arise.

Please say a little prayer for Kennedy tonight! I believe your thoughts and prayers have been a big part to her success!

I will update everyone tomorrow night. Well I have to get bed, we have to be out at Loma Linda at 6:00 a.m. - Arghhhh :)

P.S. Thank you for all your prayers Marilyn!!!! Your words of kindness and encouragement have meant so much to me. Sorry I have not been able to e-mail you back, I have been super busy. However, we should get together for lunch one weekend. Maybe you and Melissa could meet up with Kennedy and I. Let me know what date works for you guys. Love you :)

Appointments, Appointments, Appointments

2009-02-24T17:08:00.000-08:00

Tuesday, February 24, 2009
So Kennedy has had a plethora of appointments in the last week or so, we have seen the GI, tried to see the Ophthalmologist, went to the High Risk Clinic to have her initial evaluation, and saw her Regional Center teacher for the first time.

So Dr. Yanni (GI) said that Kennedy was doing great. He was really happy with her growth - primarily her weight gain. Kennedy is now a whopping 14.85 lbs. Kennedy has finally made it on the CDC's growth chart. She is now in the 30th percentile for weight, however, she still is not on the chart for her height (but if they saw Brian they would know why......hahahah) He also wants us to start weaning her off of breast milk and onto formula. I know some of you are wondering why would he want her off breast milk - isn't it the best thing for a baby?!?! Well it is the best thing for a baby, however, that is a baby that is also supplementing with baby food. Since Kennedy will be on some sort of formula for an extended period of time he wants to begin switching her know to ensure she tolerates it well. It will take us about two months before she is completely formula fed :(

I have mixed feelings about it - I feel that this is my one and only true connection to Kennedy. It is one of the only "normal" things I am able to offer her. Kennedy has been exclusively breastfed for almost 7 months. That is right folks - I have been pumping this entire time, I am on a crusade of some sort :) I guess I am happy that Dr. Yanni wants to do this transition slowly, that way we can let Kennedy set her pace and we can see how well she is tolerating the switch. I am still pumping but I have cut back to only two times a day.

We also went to the High Risk Clinic for her initial evaluation. This place follows children who are at risk for the first three years of their life. They recommend services and evaluate her growth and achievements. The first thing Kennedy did was meet with a Physical Therapist. I was worried that Kennedy was beginning to get stiff due to the lack of movement. The therapist reassured me that Kennedy was not stiff - she told me that our daily aerobics workout with Kennedy must be working. However, she did notice the early onset of scoliosis. She thinks this is being caused because of Kennedy's extremely low muscle tone. She has little or no trunk strength. She recommended that we talk to her permanent P.T. about getting her fitted for a back brace. In addition, Kennedy will be fitted for a custom wheelchair/stroller in the next month. This will be critical for Kennedy - this wheelchair will allow Kennedy to sit up while supporting her back in all the right places. We also will be getting Kennedy a customized bath chair and a special needs chair which we can sit her up in around the house.

The P.T. said Kennedy has along way to go. Her mobility is not even equivalent to that of a newborn. She has little or no muscle strength. Then, the worst part of the entire visit.....I was asked to fill out a developmental questionnaire!!!! I absolutely hate those things. I just don't understand why they ask me if I mind filling it out - of course I mind! These are the most depressing things to look at. I had to go through four pages of things Kennedy "should" be doing and check a box which states she no where near the milestones listed. ARGHHHH!!!! But for the good of science & medicine - I obliged.

Finally Kennedy has met with her Regional Center Teacher three times this week. She did so good. The teacher and her played for three thirty minutes each session. They did some excersies, sang songs, played with toys, red books, and had tummy time. The Reginal Center will provide free services for Kennedy until she is three years of age or until she is equivalent to children her adjusted age - whichever comes first.

My biggest battle right now is finding additional funds and services for Kennedy. The fact that she is classified as permanelty disabled....you would think this would open all sorts of doors for her with respect to state and federal aid, however, you couldn't be more wrong. Finding financial help for my daugher is the hardest thing I have ever tried to accomplish. We have applied at California Children Services (CCS) to get help with our $32,000 of medical bills, however, we are being told we make to much money and we don't qualify for medical reasons becasue Kennedy has yet to be diagnosed - What a crock of shit!!!! Don't worry I am appealing this decision. I have also applied for Social Security Disabiltiy for Kenendy. We have yet to hear anything back, but I am told that the state rejects all applicants the first go around. I am also trying to find out how to get Medicare for Kennedy. She does have private insurance through me, however, she is almost at her lifetime cap of 1.5 million dollars pus it does not cover everything she needs. For example, they want Kennedy to have three P.T. sessions a week, but my insurance and most insurances only cover 20 visits a year - you do the math!!!! If ayone has any experience with getting state help for your special needs child - please provide me all your tips and advice. I am open for any and all suggestions/ideas.

Sorry for such a long post....I have been meaning to post more often, however, it has been so hard to find the time now that I am back to work full-time. But I am trying my best. Tomorrow Kennedy has to go and get her synagis (RSV) shot and on Tuesday she has her surgery. She gets her Peg Tube changed to a Mickey-Button (its a more permanent feeding tube). Keep us in your prayers as Kennedy will be put under general anesthetic and intubated (again).

Enjoy your weekend................

(Above: Kennedy worn out after one of her sessions with her Reginal Center Teacher)

(Above: My beautiful Baby :)

(Above: Kennedy in her bed for the first time ever!!!!!! We bought her a new mobile - she loved it)

(Above: Kennedy enjoying her bed)

(Above: Kennedy watching T.V. with Mommy)

(Above: Kennedy relaxing in her spot that Daddy made just for her using all the couch pillows)

Neurology Appointment

2009-02-17T20:45:00.000-08:00

Tuesday, February 17, 2009
So today Kennedy had her monthly Neurology appointment. We learned a lot, some good and some not so good. To begin Dr. Michelson was pretty happy that Kennedy's seizures were under control, however, he wants to do whatever he can to find a different medication then phenobarbital to control her seizures. He was explaining that if phenobarbital works to control seizures then there is also another medication that could do just the same. it is just a matter of finding what medication that is. As I have explained before I want Kennedy off the Phenobarb because it just makes her so drugged out and Dr. Michelson wants her off the Phenobarb because it has been proven to cause brain cell lose in lab rats - then why in the world would someone prescribe this medication to an infant?

So we will begin weaning Kennedy off her Phenobarb and Topamax and begin her on Keppra. Great, now we have to go through the withdrawals all over again!! I am really not looking forward to this. Last time we did this Kennedy took it really hard and it was very taxing on Brian and I.

I also found something out which makes so much sense now. Dr. Michelson told us that he does consider Kennedy an Epileptic and that the EEG showed her seizures taking place in her temporal lobe and affecting the hippocampus. This is a part in the brain that plays a major role in memory (mainly short term memory). In Alzheimer's patients this is the part in the brain that is first to be affected. So ultimately every time Kennedy has a seizure she pretty much wipes out her memory. It now finally makes sense!!! I have always said that Kennedy will do things one day - like drink two of her feedings from a bottle, and then the very next day she forgets how to do it completely.

I also asked Dr. Michelson his opinion on Kennedy muscle issue - the fact that she does not move at all (almost as if she were paralyzed). I just wanted to know his honest opinion. I wanted to know am I doing the right thing? Should I be seeing another sort of specialist for this issue? I guess I just needed some reassurance to my actions! He stated that he does not want to give a definitive answer or assumption as to Kennedy's condition until her next MRI/MRS, however, he does not think it looks to good for her. He explained since she did not move much in Utero and the fact that she did not move much once she was off Phenobarb the likelihood that her condition will improve is poor. He explained that most likely whatever is wrong with Kennedy there probably won't be a cure for and she probably won't advance much more then she is know.

It was an appointment full of so much information, however, it was also so damn depressing. Why? Why Kennedy? Why me? I just don't get it. I swear it does not seem like we ever get ahead in this game (if that's what you want to call it). I stay as positive as I can, but it is just super frustrating and very disheartening to go through this day in and day out and never really seem to get ahead.

Anyways, Friday March 13th is the day. Kennedy will have her MRI/MRS at Loma Linda. The following week we have our follow up appointment with Dr. Michelson to find the results of the MRI/MRS. It will tell us if the brain is developing normally (besides the cerebellum). If the myelin generated properly. If her brain is showing signs of atrophy (or degeneration). If she does truly have a Mitochondrial Disease (which can be seen in pictures of the basil ganglia and the brain stem). This test and appointment should really tell us so much more about Kennedy's future.

I will keep you guys updated. Thank you again for all your support - It truly means so much to me :)

STOP THE PRESSES!!!!

2009-02-07T22:45:00.000-08:00

Saturday, February 7, 2008
OMG......with all the chaos that has insued in the last two weeks I didn't think that there was going to be a light at the end of this tunnel. However, I am proud to announce that Kennedy ate her ENTIRE FEEDING (5 ounces) BY MOUTH tonight!!!!!!!!! Let me repeat - Kennedy ate her whole feeding in 30 minutes by bottle. I can't beleive it. Kennedy has not slept in the last two days due to another cold which she probably got from being in the hospital. Anyways, Kennedy haS been trying to suck like crazy in the last two days. Anything she gets her lips on she sucks on; she sucks on our fingers, her fingers, my chin, her pacifier etc....

So tonight Brian and I were thinking outloud about trying to give Kennedy her bottle to see what she would do. So Brian got a bottle with 2 ounces and we gave it to Kennedy and away she went. She finished the entire bottle in 5 minutes! The entire time Brian and I were looking at each other thinking "this can't be true". After she was done Brian got up and got another bottle with 2 more ounces. Sure enough she finished the second bottle in 10 minutes. So, we decided since she had already done 4 ounces by bottle why not try to feed her her entire feed by bottle. So Brian got up and got 1 more ounce and sure enough Kenndy finished it off!!!!!! In 30 minutes Kennedy took all her feed by mouth. No need for her tube tonight!!!!! It normally takes her 60 minutes to take 5 ounces when we feed her with her feeding machine, however, Kennedy took her entire feed by mouth in half the time. Well I just wanted to share this exciting news with everyone.

I am just so damn excited!!!! I really hope that this is not a fluke. I am hoping that she is actually ready to eat via mouth. Well I will keep everyone updated!

Have a good night all!!!!!

Seizures

2009-01-25T16:12:00.000-08:00

Sunday, January 25, 2009
So, we have had quite an interesting weekend!! Kennedy has begun to have, what we think are seizures. We called the on call peds neurologist and he said what I was describing sounded like partial seizures or focal seizures. He directed us to begin Kennedy on her Phenobarbital again :(
What happens is she will be just fine and then all of a sudden her eyes will go upwards, she will kink her neck to one side and she will push out the bottom of her jaw. She will do this consecutively for about five to ten minutes.

So Saturday morning we began the Pheno, however, Kennedy continued to have seizures. Since Saturday morning she has had seven seizures - the Pheno doesn't seem to be working. The only thing it is good for is making Kennedy sleep! I hate this medication!!!

Hopefully, we can get the Neurologist to see Kennedy on Monday. I don't want her to be on that Pheno any longer then she needs to be. I also want to know exactly what is going on. Brian and I have made an executive decision, we are giving these doctors at Loma Linda a couple more months to figure out what is wrong with our little girl and then we are off. We are going to take her to Baltimore, to the John Hopkins Hospital. It is supposed to be the best hospital in the U.S. for Pediatric Neurology. I am sick of being jerked around and not getting any answers. I have been patient for over five months and it has not gotten me anywhere.

Anyways, I have included the video of Kennedy's seizures to see what people think. I am hoping by having these episodes on video the doctors will be able to help us better. If anyone has seen these before, please let me know. Are these seizures......who knows!

The Mystery Continues.....

2009-01-18T13:51:00.000-08:00

Sunday, January 18, 2009
Just a quick update on Kennedy's Upper Respiratory Infection.....Her cough is finally gone and for the most part she sounds pretty clear. Her nose is still a little nasally, however, we were able to avoid any fever and the onset of pneumonia - Thank God!!!

Last Wednesday Kennedy had one of her monthly specialist appointments with her Nephrologist (Kidney Doctor). The goal per our last appointment was to try to start weaning her from her two blood pressure medications. I was thinking that this was really going to come to fruition because when we were in the ER Kennedy had the best blood pressure reading ever: 74/52, however, my hopes were quickly destroyed once the nurse took her blood pressure. Her blood pressure was 136/64 - WHAT!!!! How in the world could we go from a completely normal blood pressure last week to a blood pressure that was too high. I asked the nurse to retake her blood pressure to ensure the cuff was on correctly. Lets just say we all ignored what the second blood pressure reading was: 165/69.

The doctor came in and was very perplexed as to why this was all occurring. Kennedy's blood pressure is all over the map. It seems like her medication is working sometimes and other times it is not doing a darn thing. The good thing is per her EKG her heart does not show any signs of thickening, which is great, however, this also adds another layer of complexity to Kennedy's already complicated story.

Her doctor thinks that maybe something is going on hormonally or with her adrenal glands. But was had two ultrasounds of her Kidney's and adrenal glands and everything came back normal - What a surprise!!! I just don't F'n get it! How can Kennedy be so complicated that these highly educated over paid doctors can't find on damn thing wrong with her. I mean hell her cerebellum took two MRI's before she was even diagnosed with having cerebellar hypoplasia.

So the game plan is to wait and see what our next month appointment shows. If her blood pressure is still elevated we will be doing some hormone related tests. Also, her Nephrologist is going to consult with her Neurologist to see if her cerebellum could be causing her unexplained high blood pressure.

Well.....I just wanted to vent. Next month is a big month for us. Kennedy will get her second MRI and have her peg tube changed to a Mickey Button.

Hope everyone had a good weekend - I will post tomorrow and let everyone know how my first day back to work was.

Pictures, Pictures, and more Pictures

2009-01-12T12:13:00.001-08:00

(Above: This is one of Kennedy's Christmas Card Pictures.)

(Above: Bath time - Kennedy's favorite time of the day!)

(Above: Showing off her baby blues)

(Above: Kennedy using her new froggy that she got for X-mas - it really keeps her warm in the bath)

(Above: looking at Christmas lights up the street)

(Above: Kennedy all bundled up ready to look at some Christmas Lights)

(Above: Right after Kennedy got her picture taken with Santa Claus)

(Above: Kennedy and her cousin Brennen)

(Above: Kennedy with her sock puppet from her Aunts back East)

(Above: Kennedy and Daddy relaxing after opening up presents X-mas morning)

(Above: Awesome Alex opening up her present from her Super Secret Santa Brian)

(Above: Kennedy's cousin Ashlynn)

(Above: Kennedy and Grandma)

(Above: We have a new Sheriff in town - thanks Uncle Vincent)

(Above: Kennedy playing with all of her toys from Christmas)

(Above: Gosh this is easy! Kennedy and her cousin Ashlyn)

(Above: Trying to get Kennedy to take her milk from a sippy cup - she seemed to do pretty good)

(Above: Kennedy is ready to ring in her first new year)

(Above: Daddy and Kennedy waiting for the clock to strike midnight)

(Above: Happy New Year!!!!!)

(Above: Daddy and Kennedy relaxing after a long long day in the ER)

2009

2009-01-11T22:08:00.000-08:00

Sunday, January 11, 2009
I know, I know......It has been forever since I updated my blog. But life around the Bonomo household has been super hectic!!! Kennedy has been a handful. We have had a lot of doctors appointments, we are weaning Kennedy off her Phenobarbital (which has been an adventure I wish to never embark on again) and to top it off Kennedy has been fighting a really bad upper respiratory infection (URI) for the past two weeks, thank goodness it has not progressed to pneumonia.

Lets go back to 2008. Kennedy had her follow up appointment with her Neurologist Dr. Michelson during the second week of December. All in all it was a good appointment. Dr. Michelson felt that Kennedy was not digressing, therefore, ruling out a plethora of tests he wanted to order. She had not technically advanced or reached any milestones but she was not digressing. So as of now that rules out alot of terminal diseases. I explained to Dr. Michelson my concern of Kennedy's excessive sleeping. She was sleeping 22 hours a day - literally!! I told him that with her neurological problems and other issues I didn't think that this was very productive. I told him that I wanted to see if we could wean her off her Phenobarbital seeing as she has never had a visible seizure. He agreed that the benefits of the Phenobarbital no longer out weighted the side effects it was having on her. He explained that we would be dealing with a baby that would be having extreme withdrawals and boy was he right. It will take us 5 weeks to completely wean Kennedy of this medication. In addition, Dr. Michelson wants Kennedy to get another MRI/MRS. He explained that there has been enough time that has elapsed that will show if there are any changes taking place in Kennedy's brain. We will see if all her mylin (white matter) has developed, we will also see if her brain is still at the same size as it was two months ago. The only downside to getting the MRI/MRS is that Kennedy has to be placed under local anesthetic. Due to her history and breathing issues no one is comfortable administering sedation medication to Kennedy without having her intubated :( Kennedy should be having her MRI at the end of January or beginning of February. I will keep everyone posted as to what the findings were and to how Kennedy held up.

Kennedy also had her 4 month well baby check-up. My cousin Ali spent the night so she could come with me. It is so nice to have someone come with you when you have to take Kennedy on an outing. She requires so much stuff that it is hard to manage everything by yourself. It was kind of depressing filing out the information about Kennedy. It is weird, but when I am at home with Kennedy I don't notice how behind or different she is. But once you get out or are around babies Kennedy's age it becomes quite apparent how behind Kennedy is. I had to fill out a development section regarding Kennedy and every question I had to answer NO too! Kennedy still does not hold her head up, Kennedy does not social smile or smile at all for that matter, she does not roll over, and she does not eat food via mouth. We also found out that Kennedy is very behind according to the state wide standards. But geeze they don't take into Kennedy's special circumstances into account, such as she was 4 weeks premature and she was in a coma for almost three weeks. With that being said Kennedy was in the 5 percentile for her height (22 1/2 inches) and she was not even on the chart for her weight (11 lbs 7 ounces). Kennedy is still breastfed, so Dr. Jeng suggested adding another teaspoon of her high concentrated formula to her breastmilk. And no visit to the doctors wouldn't be the same without some sort of pain. Kennedy had to get all her shots, in addition, she received her third dose of synagis (the shot to help fight off RSV). Kennedy did great with the shots though. She did not flinch until the medicine was actually injected.

Now on to a more lighter subject. Kennedy's first Christmas!!! It was a blast. I think Kennedy received the most gifts out of anyone in the family. We spent X-mas Eve with my Mimi and the entire family. It was the first Christmas in Mimi's new house. It felt like we have always had Christmas in this house. Kennedy came dressed in her Santa outfit that mimi got her. Christmas morning Brian got up early and took care of Kennedy's 5:30 a.m. meds and her 6:00 a.m feeding and let me sleep in. While Kennedy and I were sleeping Brian started a fire for us to open our presents up by. We had a great first Christmas together as a family. Mommy got her UGG boots that she was waiting for (thanks Daddy)! After presents we all got showered and got ready to head off to Brian's brothers house for Christmas Dinner. I had Kennedy all dressed up with a cute jacket on, however, was forced to take it off upon walking into Greg's house due to Kennedy's excessive sweating (withdrawal syndrome). It was nice because Brian's parents were able to come down from Colorado to celebrate Kennedy's first Christmas.

We also had a really good New Years Eve. Kennedy got to celebrate her first New Years with her Godparents!!! We went to our favorite Mexican food restaurant and then headed to Spencer and Sarah's to ring in the new year. We hung out outside under the heatlamps. Kennedy was such a trooper she was not fussy at all. She was lovin' all the attention from everyone. She had such a good night that she rang in the 2009 with her Mommy and Daddy.

So now that I have caught everyone up to 2009........the first two weeks have been stressful to say the least. I am really bummed that I have to go back to work on Monday, January, 19th (I just want to be home with my daughter, I know her the best and I know what she needs when she needs it). It has been four weeks since we started weaning Kennedy off her med and I would have thought that Kennedy's withdrawals would have subsided by now, but no luck on that one. She still is very fussy three days after we lower her dose and still experiences extreme cold sweats. However, the good news is that Kennedy is now alot more awake and alert. I had no idea what a strong medication that Phenobarbital was.

I can't believe Kennedy has come down with a severe Upper Respiratory Infection. We took her to the ER where she was administered several breathing treatments and was hooked up to her favorite monitors. It was a little disconcerning because Kennedy was sating at 94 most of the time. The doctors did not want to admit Kennedy (thank god) but I needed to follow up with her pediatrician the next day. Dr. Jeng told me that her X-ray showed that small parts of Kennedy's lungs have collapsed, however, since she did not have a fever and the mucus that was suctioned from her lungs was not green we did not need to worry. He wrote me a precautionary prescription for amoxicillian in case Kennedy broke a fever. This would eliminate a trip to the loma linda ER - thanks Dr. Jeng, you are a lifesaver.

Kennedy is still sick, hopefully this will pass soon! Tomorrow we have a three people from the Regional Center (a therapist, teacher and patient coordinator) coming to the house to perform Kennedy's initial assessment for the Early Start Program. This will tell us where Kennedy is at as compared to other babies her age and what they will do to try and get Kennedy up to speed. I will post tomorrow with all the details.

I hate doing these long posts because they are always so long, not detailed, and I always forget small spans of time. Anyways, it is late I still have to pump go to bed and wake up at 5:30 a.m. for meds.....so I will post pics tomorrow morning along with my update from our assessment.

The Bonomo Family Christmas Tree

2008-12-07T17:52:00.000-08:00

Sunday, December 7, 2008

Today Brian and I took Kennedy to the Christmas tree farm to pick out her very first Christmas Tree!!! She was awake for the first 10 minutes of walking around trying to pick out "the perfect tree", however, soon feel asleep in her pack. I am so excited to get to celebrate this Christmas with our baby. I think this is going to be the best christmas thus far.

We decorated our tree and listened to Christmas music all afternoon. Kennedy just relaxed (slept) on the couch. I love this time of year!!! I also have dressed Kennedy in Christmas attire since Thanksgiving, hey you don't have long to dress your baby in whatever you want so I am taking full advantage.

On a side note....Kennedy has been doing great since we started the rice cereal and stopped her prevacid and reglan medications (without doctors orders). I am sure I will get an earfull on Monday from her GI doctor, however, what did he want me to do??? I was not about to let her stay in the state she was in. She has not thrown up since Friday night!!!! In addition, she is just so calm and content (like she used to be). I am concluding that it was the medicine and not the G-tube that was bothering Kennedy. The G-tube was placed and medicine began on the same days.

Enjoy the pics!!!!!

(Above: A typical Kennedy face - Mommy loves Christmas attire!!!!)

(Above: "Auntie.....Get this hat off me")

(Above: Chubby cheeks!)

(Above: Slumber party @ Grandpa and Grandmas. Kennedy and I spent Thursday and Friday night at my parents. We had a nice relaxing couple days, it was nice to have so many hands!)

(Above: Picking out Kennedy's first Christmas Tree)

(Above: Santas Little Helper)

(Above: Daddy and Kennedy)

(Above: Reindeer Feet)

(Above: Mommy and Kennedy)

Thanksgiving

2008-12-03T15:11:00.000-08:00

Wednesday, December 3, 2008

The one thing I wanted more then anything was to have Kennedy home for the Holiday's. Kennedy celebrated her first Thanksgiving at Aunt Donna's. It was a day full of food, laughter, and fun. Kennedy was a bundle of joy on Thursday. She was up longer and more alert then she had ever been before. No one could keep their hands off her. She was a social butterfly and the highlight of the day.

The things I am thankful for:

* I am thankful that God gave me Kennedy. Even though life has been so hectic I forget to brush my teeth and wash my hair sometimes I wouldn't want it any other way. Since Kennedy came along I learned that not all people can handle a child with special needs. However, I know I can and I couldn't imagine Kennedy with anybody else.

* I am thankful for my family and friends. For all their help and understanding. I know I have not been the best of friends or the funniest to be around lately but you all understand why and don't judge or resent me for that.

* I am thankful for all the strength and resilience Kennedy has in her

* I am thankful for medicine, doctors, nurses, feeding tubes, bulb syringes, and spit up rags

* But most importantly I am just thankful to have Kennedy home where she belongs!!!

(Above: Kennedy in her 1st Thanksgiving outfit)

(Above: Nana (Great Great Grandma) holding Kennedy for the first time ever)

(Above: Five Generations - and no we do not have scrubs on this time!!!)

(Above: Kennedy with all the girls)

(Above: Kennedy was screaming bloody murder to get away from all those men - she is truly a girly girl)

(Above: an ole fashion stare off between grandpa and Kennedy)

(Above: Kisses!!!!)

(Above: Just the three of us)

Home with a G-Tube

2008-12-03T12:44:00.000-08:00

Wednesday, December 3, 2008

So we have been home for about a week and a half and things could not be any worse. Kennedy had a G-tube surgically put in on Tuesday, November 18th. The surgery went differently then expected. Kennedy was supposed to be given an anesthetic through her IV, however, at the last minute everything changed. The doctor was not comfortable operating on Kennedy unless she was put out with a general anesthetic and put on a vent, he did not trust her breathing. I went into her surgery expecting one thing and was thrown for a loop with this news. I really had no choice so I agreed after a lot of reassurance from the head anesthesiologist and Kennedy's GI doctor. I was so scared to see my little baby on a vent again.

I sat in her recovery room for what seemed like two hours but in reality it was only 30 - 35 minutes. When they wheeled her into her room there was NO VENT she only had an oxygen mask on - Just in case!!! Thank goodness. The nurse said Kennedy did great. They were able to get her off the vent right after the procedure was complete.

The next 24 hours was rough for Kennedy. She was in alot of pain from the procedure. Not to mention she was going on over 40 hours with no food. The first night we ended up giving Kennedy one dose of Morphine to ease her pain. She was screaming non stop and her heart rate was out of control. We didn't want to risk any issues with her blood pressure as well.

The first four feedings she had were pedialyte. She did really well on it. From there we progressed to breast milk for four feedings. She also tolerated that really well. Finally she had to be able to tolerate the breast milk with one teaspoon of enfamil 22 cal formula in it. She threw up once with that but overall seemed to tolerate it really well.

The first four or five days of her being home were good. Kennedy seemed to be doing really well. I think she was really happy to have her feeding tube out of her nose. It gave her a sort of freedom that she had never had before. However, after Thanksgiving our luck began to change. Kennedy has been doing horrible. She is crying and throwing up non stop. She can not keep anything down. No matter how much or how little you feed her she still throws up. In addition, she has been screaming all day and all night. She is even waking up from a dead sleep screaming at the top of her lungs. I don't know if she is sick (her temp is fine), if the tube is bothering her, if the milk is not mixing well.....I DON'T KNOW. To make matters worse all of Kennedy's doctors are either out on vacation or are booked until next week.

Last night I had an idea.....after doing a lot of research I was reading that other people who have kids with reflux problems or with G-tubes got some good results by adding rice cereal to their babies formula or breast milk in order to thicken it up. It is supposed to help them from spitting up and keep them feeling fuller and more satisfied. So I started this last night and so far so good.

I will keep you all updated. In the meantime here are some new pictures - Enjoy!

Above: Kennedy just hanging out in her boppy on a cold day

Above: Brooklyn - one day Brian and I will be able to take Kennedy back east and hang out with her Aunts.

Above: Kennedy just relaxin'

Above: The first day BACK in the hospital - Acute Pediatric Unit

Above: Daddy and Kennedy after Kennedy's surgery. We have her wrapped all tight to ensure nothing would hit or bother her G-tube

Above: A rare look at Kennedy with no visable strings or cords!

Above: Kennedy loves her mobile that grandma got her.

Above: It looks like she is about to crack a smile.

Above: Kennedy and crazy Breanna

Just Shy of ONE Month

2008-11-16T20:39:00.000-08:00

Sunday, November 16, 2008
We were four days shy of being home for one month when we were readmitted to Loma Lindas Acute Pediatric Hospital. That's right - we are back in the hospital. Last weekend Kennedy was having some trouble breathing and was very congested. We were very concerned seeing as Kennedy has Respiratory Distress Syndrome (RDS). Friday and Saturday she was congested but overall seemed fine. However, Sunday was another story. Kennedy was having alot of trouble berating. She was gasping for air numerous times. Her skin became very mottled and she looked a little pale. Plus, when you placed your hand on the back of her chest you could feel rattling in her lungs. So Brian and I decided to rush her to the emergency room at Loma Linda.

It took us about 25 minutes to get there and we had a bed within ten minutes. The second I started telling the admit team Kennedy's history they rushed us back. An X-ray was performed and it was determined that Kennedy was developing Pneumonia. When I heard those words I freaked out!! If you remember, while in the hospital I was always told that it was pneumonia that would kill Kennedy. I was really beginning to panic. The nurse drew some labs consisting of a complete blood count (CBC) and a metabolic panel. The good news was that Kennedy's liver levels were almost normal, her billirubin levels were normal, and her hematocrit and retic count were perfect (which means her anemia is going away). However, her white blood count was elevated. After drawing the labs the nurse tried to place an IV but was unsuccessful - big surprise. The nurse called down for an IV Therapist to place an IV in Kennedy because the doctor wanted to start her on antibiotics to treat her pneumonia. I explained to her that Kennedy is not an easy stick and that her blood clots before the IV can be placed. After 5 different attempts I told the IV therapist to stop. I was not going to let her poke her time and time again and ruin all of her veins. I spoke with the doctor and she said that we could hold off on the IV and put her on oral antibiotics for the time being.

We were not admitted to the hospital until 6:00 am the next day - boy were we tired. Brian and I had no idea that we would be staying at the hospital. We were not admitted to the NICU, but instead to the Acute Pediatric Unit. The ONLY nice thing about being in this unit as apposed to the NICU is that you can spend the night!! Everything else is horrible. The nursing care is pathetic. I sometimes wonder if these people even have their RN licenses and if they really do how in the hell did they obtain them. Tuesday morning I woke up to the Nurse saying that we needed to get an IV started in Kennedy because the doctor wanted to have the antibiotics run via IV. I told her that she would have to call the NICU and get someone from down their to come up and start her IV. She tried to argue with me and tell me how they had really good IV
Therapists, however, I told her how the really good IV Therapists could not get a line in Kennedy on Sunday and how she blistered Kennedy's forehead. I think they were really irritated with me because they had to call down to the NICU, but oh well. At this point I could care less how mad they were at me. I am sick of my baby hurting and getting poked all the time. Later that afternoon a couple of girls we knew from the NICU came up and stared Kennedy's IV in two tries!!!!

I had a meeting with the Nurse Manager to discuss the dismal care the nurses were providing. I explained Kennedy's situation and told her how unsatisfied I was. She stated; "oh you are a NICU mom". That is right!!!! However, as I told her, being a NICU mom has nothing to do with the job her nurses were doing. Kennedy's pulse ox had come off and was alarming. I didn't silence the alarm or re stick it to Kennedy's foot because I wanted to see how long it would take someone to see what was going on. It took over 12 minutes - thank god the pulse ox wasn't beeping because she was d-sating otherwise she might have been blue by the time they came in to see what was going on. They were doing things that anyone would be very concerned with like; not washing their hands, reusing syringes, not cleaning out Kennedy's kangaroo bag (feeding bag), having no idea how to place the leads. She apologized and told me that she would get me some better nurses. We have had a couple of good nurses, but most of them have been horrible. It has forced us to stay by Kennedy's bedside almost 24/7, which is very draining. I am afraid to leave because if something was to happen to Kennedy I don't think they would have a clue at what to do.

I pushed the doctors to get some tests done to see if Kennedy had reflux and to see why Kennedy looks like she is drowning every time she drinks via bottle. We had an upper GI done on Tuesday. Poor Kennedy had to be strapped into a device that looked like a rotisserie. They made her drink barium via bottle and then they spun her around to see what the food did in her belly and to see if any reflux developed. That test showed no acid reflux. However, this test is a very poor test to determine acid reflux because it only has a window of five minutes. Of course nothing happens in five minutes. So the following day she had another test - PH Probe test. They place a probe down her nose into her esophagus and measures the amount of acid over a 24 hour period. The test showed that Kennedy had severe acid reflux and she was prescribed two medications and I was told to feed her at least at a 30 degree angle.

We also had a modified barium swallow study done to see what happens when Kennedy goes to swallow her milk. The results were not good actually it was the worst result we could get!!! Kennedy is aspirating every time she drinks. The milk she sucks from the bottle sits and pools at the back of her throat and she is unable to get it down her esophagus - her muscles are just not strong enough. So the milk pools at the back of the throat and some of it penetrates into her lungs. This is not good!!! She is making her self aspirate. In other words, the pneumonia she had was actually self induced. So were were told that were were no longer to feed Kennedy via mouth. My instincts were right. I knew this was happening with Kennedy that is why I stopped feeding her via bottle. It was just really nice to have the Speech-Language Pathologist reaffirm my suspicions.

Due to the findings of all three tests, Kennedy's GI doctor decided that we needed to get a g-tube placed for Kennedy. I knew it was coming, but I am sad that Kennedy will have to get it. I mean it is a foreign object sticking out of her stomach. However, the positives are that Kennedy will no longer have to endure the painful time of feeding. She hated drinking via bottle, it really stressed her out. Plus, we can not let her to continue to aspirate on her milk and develop pneumonia. If she get pneumonia numerous time it could be deadly for Kennedy. Kennedy's surgery is going to be either Monday or Tuesday. So hopefully we will be out of the hospital before the weekend.

Please keep her in your thoughts and prayers over the next couple of days.

I will post again once Kennedy is home!!!

Is it to much to ask for answers???

2008-11-07T15:33:00.000-08:00

Friday, November 7, 2008
Why does it seem that all of Kennedy's doctors are completely retarded? I am so sick and tired of not knowing what is wrong with my baby. Come on already.....Kennedy is over 12 weeks old and we are still no closer to a diagnosis then we were the day she was born. Every day that passes shows me more and more that there is something wrong with Kennedy - but what??

This week we had our appointment for our swallowing study, however, it was nothing like we thought it would be. We thought we were taking Kennedy in for a barium study, however, we just had a speech pathologist listen to her throat and chest with the stethoscope while I gave Kennedy her bottle. She said that it did not sound like Kennedy was aspirating, however, wanted us to get a barium study. She is not sure what is going on - what a surprise!!

Next week we have an appointment with Nephrology and Kennedy gets her second RSV shot. I also am going to take her back into her pediatrician because she keeps throwing up after her 8:00 am and 8:00 pm feeding. I think that one of her mediccations is messing with her stomach, but I am not sure which one. It could be either her multivitamin, iron, or phenobarbital - who knows.

Also, the genetic doctor at Loma Linda is driving me cuckoo!! I have called 5 times and left three messages to see what the results of Kennedy's Mitochondrial tests were. Do you think I have heard back from them - nope!! I was told that the test results would take two to three weeks. It has been over four weeks now and we have still heard nothing. I just want to know if it was positive or negative. If it is positive I want to try to get Kennedy some sort of treatment ASAP to prevent the disease from progressing and if it is negative I want to keep searching for answers.

Anyways, enough with my complaining!!! I am just frustrated that is seems like nothing is being done for Kennedy. It seems like all these other people have answers and are able to work towards improvement for their babies and we are just stuck - why????