The Hunt is Over....

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........

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

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

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

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

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)