Kylee's IFSP/Nuerology appointment

IFSP

We had Kylee's IFSP on Monday. It is amazing how much she couldn't do 6 months ago and you feel like she has always been able to do that. Such as rolling. She met some of her goals. I think 2 or 3 so I was very happy with that. We decided to up her Speech visits as that has always been an issue for us and we would like to work more on eating and get her vocal. We also talked about school a little during our IFSP and we talked about maybe doing a slow transition. Start maybe by taking her when the classroom is empty and then slowly working into a regular school day. I am just worried that she will get into a different setting and shut down and go right to sleep. Sounds like it will be a process to transition her but it is an exciting one. We also talked about doing a day where they get these special eye gear from the state and then we can invite anyone who works with Kylee on a regular basis to come over and you where this eye gear and do different activities so that you can understand what it is like to see the world thru Kylee's eyes. I think this will be a good thing to do. I think we all forget about her vision difficulty once in a while and then don't use as many vocal cues as we should.

Neurology

We had a good neurology appointment. I really learned alot during it. Our nurse Marsha also went along which was really nice because she could help me remember my questions. He said her EEG's are disorganized but he is not sure how much of that is from seizures and how much is from the gen tic deletions. He said as long as she keeps developing he is not going to worry too much about it. Because she is having a lot more seizures that I am noticing at home and she also had one while he was examining her he decided to increase both her seizure meds. He really seems very sure of himself that this will work. The seizures are a lot less both in frequency and in intensity but they are not gone yet. He also said he does not feel the throwing up is seizure related which brings me to my next topic.

New Formula

Kylee is now on her new formula and it seems to be helping a little. She is still throwing up but not as much as she was before. We have a GI appointment coming up in the next couple of weeks so we will have to discuss it during that appointment.

Kylee's Birthday

Kylee's 2nd Birthday is coming up on December 18th. I can't believe how fast those 2 years went. We have been working on her invites tonight. She is having a Strawberry Shortcake birthday. I also have been working on some fun stuff to post on her birthday. Hopefully I have them all finished by then......so you will have to stay tuned :)

Nursing

Kylee's Tuesday/Thursday nurse moved away (Julie). So at the moment we are interviewing for a Tuesday nurse. Marsh was willing to pick up Thursdays but she can not do Tuesdays. We have a nurse coming next week to interview but she said she couldn't do every Tuesday but could do one here and there. This is the worset part. Trying to find someone who works well with our family/takes good care of Kylee and that you can count on. There are not too many of those around. So if anyone who is reading this knows of some independent nurses in the area send them my way.

Hope everyone has a nice turkey day!!!!