Equipment

Equipment

Kylee got approved for family support again this year so we are thinking about different things Kylee is needing that our insurance won't pay for. She was in need of a bath chair as she has outgrown her baby tub and we were able to get that approved thru her state insurance. We were very excited about that. We are also looking at getting Kylee a new car seat. Keegan is going to be using hers so we want to get her a new one. We have been asking around about a good one. Our therapy people have suggested 2 different ones and they are very expensive. Around the $1000 range. They said as long as we are getting one we should get one that will grow with her. One of the directors of something another for the county came out last week with one of our B-3 therapist and said that he use to be the director of the CP center. He gave me a name and number of someone to call there to have them help us with getting a good car seat and getting one paid for. I was very happy about that. We are also looking at a video monitor, a portable ramp, a new pair of glasses, some touch toys. All things we are very excited about.

School

I got to talk with a parent who lives very close to us that has a child with special needs who goes to the same school Kylee will be going to. She said that everyone is wonderful which made me so happy to hear. Sometimes things be too good to be true and I was worried that is how school would be. Everyone seemed so wonderful but would it stay that way. Collin has a friend Ian whose mom is a teacher at the school Kylee will be going to and she said that they are wonderful and that the kids are very accepting of the children with special needs and always want to help them out. That also made me very happy to hear. I always say kids can be mean but it sounds like at least during the elementary years they are very accepting. I keep joking that I am going to put a sign on her wheel chair that says fragile do not touch. I love having other kids interact with Kylee but not during cold and flu season months. It is going to be hard to let her go next year but something I have to do.

Rolling

Kylee has began to roll again. We are so excited. She has been rolling for a long time but once she got her GJ tube she stopped so we were a little concerned. She rolls all over the place, gets all wrapped up in the tubing and tips the IV stand over. We have to watch her a little closer now with all the tubing but happy that she is on the move more. Keegan has also began to crawl so there is never a dull moment. The kids are always on the move.

It's Back

Kylee's #2 diapers have returned. We had a really nice break and got her hinder all cleared up and then it was back. We have taken a sample in to get it tested for everything you could possibly think of. So we are waiting on the results for that which I have the feeling they will all come back fine because that would be too easy. We are also back to trying to find something to clear up the diaper rash. We have tried everything. Nothing works.

Nursing

We now have nursing 5 days a week during the day and now we have a nurse one night a week. She is going to come out on Wednesday or Thursday from 3 pm to 9 pm. I can't wait. It will be so nice to be able to go out for supper and some drinks (some nights I feel like I need lots of them) with friends once in a while (I can get anyone to watch the boys but Kylee is limited) or to do activities with all 3 kids like going swimming or going to the park. There are alot of things I would like to do with them but with Jason working nights I don't always have the option. I am so excited about this. One of our other nurses also offered to take Kylee overnight some time if Jason and I wanted to get away for a night. We wouldn't know what to do.....I know sleep....sleep is rare in this house. One night I got a whole night sleep and I woke up sick in the morning. My body didn't know how to handle it. Between Keegan teething and Kylee not sleeping or her feeding pump going off a full night sleep never happens. All part of being a mom :)

Happy Mothers Day To All The Mom's. Enjoy!!!