Weight Gain

Weight Check

Today was Kylee's first day out and about since being home from the hospital last week (big trip...we went to the Dr and Walmart). We took Kylee for her one week follow up with our pediatrician and she gained about a pound. I was really surprised. I didn't figure she would gain much of anything yet. I figured it would take some time for her body to get back on track before she would start gaining. Our pediatrician thinks the diarrhea she is having is more from the GJ tube then from the c-diff however she said not to be surprised if she does get the c-diff back again as there is about a 30% chance that she will. I guess once you get it you are more likely to get it again and they try not to give you antibiotics unless you really really need them. So with her having so much diarrhea she has a really sore bottom. They made up some medication for her that is a mixture of several different things. I know part of it is a cholesterol medicine but can't remember what the other 3 are. They mix it all up and you spread on. It is suppose to be really good so hopefully it will clear it up. It hurts her so bad that when you change her diaper she lifts her butt up and cries. I said about the only good thing about it is that she is giving her legs a work out which normally she doesn't put any pressure on her legs. We also found out that we can go to ThedaClark to have her GJ tube replaced if she pulls it out or when we need to replace it every 3 months. With her G tube I could change them out myself at home but with the GJ tube she has to have it done in radiology so that they can make sure it is down far enough in the intestine and placed properly. So that saves us a two hour trip to Milwaukee for about a 5 minute procedure.

Bath Chair

Our DME guy came out on Monday and fitted Kylee for a bath chair. I am very excited about it. It stands about 1 inch high so she can get down in the tub and soak in the water. It does come with a base that makes it stand out of the water but I don't for see we will use that any time soon. It is very portable. It folds up like a lawn chair so that we can take it to the beach and to a toddler pool. I think we will get a lot of use out of this. It offers great support around the head and chest which is what she needs right now. You can also lay the back of it flat or at all different angles. He said that the state has been paying for most of them that he has sent thru this year. He said he is sure our primary insurance United Healthcare will deny it but he said he would give it a try. They say it is not a necessity. So hopefully one of them will cover it. If not we have become eligible again for our family support money...which completely surprised us. They told us not to expect again for a couple of years.

Therapy

We took the week off of therapy this week so Kylee could get back on her feet. We are starting back up on Monday. She will be getting Speech and OT this week and then our service cordinator is also coming out. She is bringing out something called a little room. It is a box about the size of a kitchen table. There are many different items hanging from the top of it. You put Kylee on a board that has wheels and you slide it underneath it and then you can't talk to her the whole time she is in it. You just watch to see if she goes for certain toy all the time. If she does then you move the toy to see if she goes to the new place you moved the toy or if she still goes to the same place the toy was. This will teach if she likes something if she will explore to find it or if she goes to the same place because that is where she can see the best. She is considered to be legally blind however she can see some with her glasses we are just unsure how much she can see. This little room is a very expensive item. It is about $3000.00 and we are loaning it from the state. It also provides great sensory input.

We also have been practicing sitting the last 2 days and she is doing pretty good. I don't think it will take her long to regain her strength and skills that she lost when she was sick. She is already rolling all over the floor and Jason and I are chasing after her with the IV stand so she doesn't pull the feeding tube out. I will be so happy when we can reduce her feeds from 24 hours a day to 20 hours a day.