Wednesday, March 19, 2008

Our appointment went well I think. I liked her much better than the Neuro we saw here in Maine.

Brooklyn had fallen asleep in my arms in the waiting room so she was asleep for much of the visit. It worked out well though because it gave us time to discuss all the issues we are having. She looked over her MRI images and explained to me that her brain has formed correctly, it's just not developing correctly. She said she does not have Microcephaly and that her head is within the normal range (30%). Her corpus callosum is too thin which we knew already. She said she does have low muscle tone (hypotonia), not so much in her arms but severely so in her legs. She said her legs are like wet noodles which of course makes it impossible for her to walk. I asked if her delays were caused by the fact that she has low muscle tone or because of her callosum disorder and she said neither; her delays are caused by her brain as a whole. Her entire brain is underdeveloped. We spoke in depth about what I believe to be seizures that she is having and she wants to do a 24 hour EEg test on her. I questioned whether or not they would need to be treated because they are so short in length that they don't seem to be affecting her much and she said if it shows that she is having them, she definitely wants to treat her for them. She said they very well can be slowing her progress and once they are treated we may see her progress much quicker then she is now which would be wonderful. I told her that for both of her EEG's she was sedated and she said they absolutely do not sedate their patients for EEG's. That was one of my big issues, how would she have a staring spell/seizure if she was sleeping? She didn't have the records from the geneticist her in Maine but wanted to see what tests had been done already, more specifically, what metabolic testing had been done. As far as what Brooklyn's future will be like, she couldn't say. She said a few milestones to work towards were, sitting unassisted by 1 1/2, pulling to stand by 2 and walking and trying to communicate by forming words by 3. She felt she was delayed by 8-10 months. She also said to be as aggressive as we could be with therapy and never ever give up hope. She examined Brooklyn after she woke up and said she was so happy that she got a chance to see her awake, that she is alert and happy and very social. She said she sounds much works than she looks and that was very nice to hear. I told her that the Neuro up here said he didn't need to ever see her again, that it was basically my call and that I could make an appointment in a year if I wanted to. She totally disagreed and said she can't believe he wouldn't want to follow up on her, which is exactly what I thought! She will be seeing her every 3-6 months and we have an appointment with her in June. She also wanted us to see a Metabolic specialist at Children's so we have another appointment on April 24th. And we are just waiting to hear when her 24 hour EEG test will be scheduled. I am so glad I followed my gut instinct and insisted we get a second opinion.

On the way into the hotel at 5:00, the day before our appointment, I get a message from the Neuro department in Boston saying that they just received a message from our insurance saying they will not cover any of our appointments at Children's. So, we will be paying out of pocket for each visit we have. Totally sucks but what can you do? I had an appointment with our case worker today and she is going to make some calls to see what she can do. B's pediatrician also said she'd do whatever needed to be done to help us out so I am going to call her as well.

Update on Cody: Well, the day he had his stitches out he fell on the ice and tore his incision back open. I had to bring him into the Drs. on Fri, Sat, Sun and Mon. so they could change the packing. We went today and the blood clot is finally dissolving, thankfully but he has a few more weeks of healing time. The Dr. insisted I look at the wound as they cleaned it out. I have seen his bum but not the actually incision and wow, I can not believe how deep it is! It is like looking down into a well is the only way to describe it. He is just miserable too and complains non stop about not being able to work, not being able to sit, not being able to see his friends. I will be as happy as him when this is over.

1 comment:

Karen said...

YAY for a great doctor! BOO for stupid insurance companies!!

I hope Cody feels better soon. You have so much on your plate as it is.