The Peanut Gallery

Tuesday, February 24, 2009

Appointments, Appointments, Appointments

Tuesday, February 24, 2009
o 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 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)

Tuesday, February 17, 2009

Neurology Appointment

Tuesday, February 17, 2009
o 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 :)

Saturday, February 7, 2009


Saturday, February 7, 2008
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!!!!!