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)
