Tuesday, April 17, 2012

The Sucker Punch

Some of my favorites from Easter

As always, I have intended to sit down and write each night for the past week or 2 but it just doesn't happen. I so want to but my body is tired and when the kids go to sleep I soon follow. There has been so much going with Anna, or what feels like so much, that I'm not really even sure what is bothering me the most. A couple of weeks ago Kenneth forgot a few different times to give Anna her morning dose of tegretol. Although I hold him ultimately responsible, I also know that Anna is becoming more and more resistant to taking her medicine and that does not make things any easier. We used to be able to say in the morning, "Anna, go take your medicine" (we always set it out in a medicine cup the night before) and she would just do it. No questions and no hesitation, she just did it. Now, you have to really stay on her. She will tell you she took it when she didn't or she will fuss and cry and tell you how much she doesn't want to take it. It is not easy being home with the kids and I know Kenneth is doing the best he can. I am so lucky and blessed to have him as a husband and the kids to have him as a father. I know we all make mistakes- I just wish this one would not have involved Anna's seizure medicine. I assume after missing a few doses that her tegretol level came down and we lost the seizure control we have had for 6 or more months. Although it troubled me and I felt sorry for her I just knew that as soon as her level stabilized we would be good to go again. In the mean time it was not fun. She was just not herself and you could tell she knew it too. It was heartbreaking. After 3 or 4 days went by like this and things were not getting better (including a seizure during her soccer game) I decided it was time to do something different because we were not getting the control back that I thought we should. She had a tegretol level drawn and the neuro's office called me today and they cannot increase her tegretol anymore so they are now going up on her neurontin. She will no doubt be a zombie for days now. I guess if it gains us control it will be worth it. I just feel bad for her. Then the special ed people with the school district called yesterday and Anna has, based on their testing (which correlated perfectly with the questions I answered- my score was the same as theirs), been officially tagged with the label "cognitively delayed." That was like a sucker punch to the gut. For some reason I've learned to be OK with speech delay or memory deficit but adding all of that up to cognitive delay is so much harder to swallow. I have been nothing but nauseated since hearing that. I know it is just a label and it does not change Anna but it still hurts. It hurts a lot. On a positive note though, it does open up many more options for us to get her the help in school that she will need so hopefully soon I will be able to let the hurt and sadness go and focus on the good this will bring. We have 3 different options we are looking at for pre-k for next year. The first is to send her to public pre-k. This is the best option except it is a need based program and again, we make too much money. If there are any slots left after the need based kids then maybe she will get a place there and she will receive services there. Our next option is private pre-k ($$$$) and they will come there and provide services. A good option, but expensive. Our third option is to send her to PPCD (pre-k program for disabled children) 3 days a week. I was assured she would be too high level for that program and now they say she qualifies (another one two punch). The whole medicaid buy in thing that I thought was going to be the answer to some of our medical money woes has turned out to be a total pain in the rear and maybe not even worth trying to get. It is not as simple as they make it sound and certainly not as beneficial as they make it sound. So for now we will continue on a payment plan with Cook Children's to pay out the $1000 that the insurance does not cover to get the neuropsych testing done on May 1 & 2. Again, she's a million dollar baby. I am so completely overwhelmed right now. I'm back to just wanting to crawl in a hole for a little while. But I know it will all be there when I come out of the hole so I might as well scratch that idea.

Carly and Kenneth had been arguing a lot and that was stressing me out too. Everyday I came home from work to find them arguing...again. I expressed to both of them how much I needed it to stop. I am so proud because they have worked together to fix the problem and things are so much better. Their biggest problem is that they are just alike. If we can make it to this Friday, Carly will have perfect attendance for 6 weeks- a first in her school career. She is very excited. She broke her glasses last Tuesday, in the middle of Anna's seizure, while she was playing on the monkey bars at the soccer field. I was hesitant to replace them because she rarely remembers to wear them. Then on Friday the school sent a note home saying she had failed her eye exam and must be seen and get new glasses. They show her as nearsighted and the last eye exam showed her as farsighted so who knows. I will take her soon to get that figured out. She is getting to be so grown up and has figured out that The Easter Bunny and The Tooth Fairy are not real. She is excited to be a part of the secret for her brother and sister though. Anna has it all confused though- she thinks it is The Tooth Bunny.

And then there is Gabe. SPOILED ROTTEN GABE! That is the sweetest kid but man is he spoiled. He is a mommas boy and he knows he's got me wrapped around his little finger, and all of this at a mere 14 months. He is eating like a pig and amazes me with what he can do with 2 teeth. He is getting closer and closer to walking but is still afraid to let go totally. I'm OK with that. We got a swing set and he loves to go down the slide, feet first, on his belly. He laughs the whole way down and gets the rest of us laughing too.

I'm out of time but never out of thoughts. I'll be back ASAP...


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