Appointments, Appointments, Appointments

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

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!!!!

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

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.....

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

(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

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.