Does She Know How Much I Love Her?

Does She Know How Much I Love Her

This is a question I ask myself often. Will she ever know how much I love her. She never really seemed to respond to us holding her or loving her but this week things have changed. She gets the biggest smile on her face when you pick her up to hold her and once in a while she gives you a giggle. We also have been playing this little game where I give her a kiss on her cheek and she will start laughing and then turn her face and I give her a kiss on that side and we keep going back and forth. Even if she can't always express how much she loves us there should never be a doubt in our mind that she knows how much we love her. We have been enjoying this week so much with her. She is just so bright eyed and happy. Her "toothy"' smile will be engraved in my memory forever. I love putting her to bed at night and having her turn to me and give me that big "toothy" smile. It is just makes it a great way to end the day.

Neurology

Well neurology had a cancellation on Monday so we made the trip to Milwaukee (as much as I was not ready to go back there it had to be done). Grandpa Eddie came along for the ride. It makes it seem so much shorter if you have some else with you. We had an hour and a half appointment and I really learned alot from the appointment. They have decided to increase her Depakote just 1 ml at night. She thinks that will get rid of the few seizures we are seeing. She also asked what her sleep pattern was like. I said she usually goes to bed around 8:30 pm or 9:00 pm and it sometimes takes her an hour to get to sleep. Then she usually sleeps until about 2:00 am and then will stay up until about 4:00 am or 5:00 am and then will go back to sleep until around 10:00 am. She said because she is not getting a full 8 or 10 hours of sleep this can increase her seizure activity. I had never thought about that. I know we have had many conversations on the 1P36 support group about sleep and her sleep pattern is very similar to many of the other 1P36 kids. She then said if we felt she was having more seizures the day after she has broken up sleep that we may want to start her on melatonin. This is another topic we have discussed on our support group. Some families feel it helps and others do not. So right now we are just watching her and will see if we notice she has more seizures on those days. If she does we may give it a try. Other then that everyone was very happy with how well she is doing and how great she looks after everything she has been thru. I always hate making the trip to Milwaukee but it is always worth it.

School

We had a meeting with the school psycologist last Friday. Didn't really learn a whole lot from it but it was still nice to get to meet her and talk about things. Everything I would ask I would get a response of "if it is determined that Kylee" needs vision services, a nurse at school, a one on one aide....everything was if it is determined. Guess I just need to be more patient with getting my questions answered and taking one step at a time. Now on Tuesday I will be going to the school and sitting in on a class and see how things work. She said there is no one in the class right now that has as many "needs" as Kylee and no one with a Kid Kart or wheel chair so the classroom is set up a little different but at least I will get the idea of how the class runs. They are also moving the early childhood class room to the senior high school next year instead of at Lincoln due to the fact they are running out of room at Lincoln. She said the early childhood kids will have no interaction with the teenagers other then kids that may sit in on a class or help out because they are interested in going to school for a field related to the early childhood class. I also got a name of a family that lives about 1/2 a mile from where we live who has a child that just moved into kindergarten but has many similar needs as Kylee as far as vision and mobility. I am going to be contacting them to see if they can answer some of my questions about school.

Sign Language

On Wednesday the La Leche group (I think that is what they are called) is offering a free sign language class for 2 hours. You are suppose to learn 75 signs. I figured I would give it a try. I have all kinds of things at home to help with learning sign language but thought if I could see someone do it maybe I would catch on a little better. I also thought maybe I would be able to meet up with other families in the area who may have children that are hearing impaired or have difficulty with speech.