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!!!!

Collin's Sister

Just wanted to share a short story about Collin. Today at school they had to color a picture of there family. His had mom, dad, Collin and then Kylee and Keegan. He told the teacher that the picture of Kylee was not his sister because his sister can't walk or stand on her legs. So he told the teacher he had to have another baby like Keegan to color. Well the teacher must of talked him into it being ok to leave Kylee as a big girl but he keeps telling me that is not Kylee because our Kylee can't walk. Right mom? Part of it breaks my heart but then the other part of me laughs. It is amazing how much he understands things and how it is just no big deal to him. That is all he knows. I remember last year when we brought her back from a hospital stay and he climbed up in the car by her and said oh honey you are still having seizures. I'm sorry honey.
One last story about him....Kylee got her Special Tomato chair tonight. It is a purple chair on wheels (I think I have a picture of it below). Well Collin has been wheeling her around the house all night in it and she is having so much fun. I wish I had a video camera so I could tape it and post it. It is so darn cute. She is so lucky to have such a caring big brother.

Pictures

Just thought I would post a few pictures.......

The Kids at Halloween

Saturday morning hang out watching cartoons

Kylee in her new Squiggles chair


Kylee listening to music...she loves the 80's tunes.

New Formula/School

New Formula

We have started Kylee on a new formula this week. It is called Peptamin Junior. It is a formula that is already predigested so it should be easier on her stomach. I guess it is not uncommon for kids to not handle the pediasure very well because it is so rich. So we are going to give that a try and see if it helps stop her from throwing up at night. It is some pricey stuff. It cost $6.50 for a 8oz can and she will need about 5 of those a day. Good thing we have insurance. I just hop it works. We also had to up her seizure medication because she was having a lot of them over the weekend. I just wish we could find a dosage and medication that would work well for her.

Eye Exam

We took Kylee to see her new eye Dr in Green Bay. I really liked him alot. He did a great job explaining things to me. He said he definitely agreed with the prescription of her glasses. We are going to do some further testing after the first of the year to see if she has cortical visual impairment and then also confirm what we learned from the Janesville school for the blind as far as what distance she sees best at and what size text and that kind of stuff. We have to go to Madison for this so that is why we are waiting until after the first of the year.

Stander

We are going to be getting Kylee's stander tomorrow night. Can't wait to see standing in it. I will be sure to post pictures soon with her in it.

School

Last week we had a meeting with Kylee's birth to 3 coordinator and she had stated that she had run into someone from the school district that said what can you tell me about this little girl who will be turning 2 in December (the school gets a listing of children with disabilities that might be coming into there school district but they don't know there name or much else about them). So April filled her in on Miss Kylee and said that I had also been asking about school and what happens once Kylee turns 3. Well we found out that they are willing to take Kylee into the school district in September instead of waiting until her 3rd birthday. So she told us to think about it and then once we decided to let them know so they can get going on the process. We are leaning towards letting her go in September because I can't think of any negatives to letting her go early. It is just in the morning. The bus would pick her up and drop her off and she would receive all therapies at the school....So anyone out there that has already gone thru the school process with a disabled child let me know what you think...I would love to hear about both the positive and negatives.

Thank You

Thought I would post a note on here saying thank you to Shelia for the wonderful card. It really made my day. I'm happy you enjoy reading about our princess.

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