GI

GI Update

We had Kylee's GI appointment today and it went really well. This was my mom's first time meeting Dr. Noe and she was very surprised at how well we meshed. We both had the same thought process on many things. One of my issues was her huge weight gain (she gained 6lbs in a couple of months). We are going to watch her for another month and see how she does. If she continues to gain weight then we are going to decrease her calorie intake and give her more water. Right now she is 20% for weight and 25% for height and he wants the two to stay pretty close to each other. We also talked about how she has been throwing up again every night and how we didn't seem to have the problem for a while. We have decided to schedule her to go in and have a scope put down her to check everything out to make sure there isn't anything going on. One thing several of the 1P36 kids have is something called EE (it has a much lager name then that but no way could I spell that). This would help rule that out. He said if she has EE it will be one for the medical books (the milk she is on is one they use for children that have EE) but it is worth ruling out as she does have many symptoms of it. We also get to work her from being hooked to a feeding tube 22 hours a day to 14-18 hours. I am so excited about that. So starting today she is going to be going to 21 hours and each week drop one more hour (if she handles it ok...it can increase the #2 diapers) until we get to 14-18. He said some kids can even handle 8-12 but that is pushing it. So for now she will have 3 hours to be a free woman.

Blood Pressure

Kylee continued to have some higher blood pressure readings so they ended up having to increase her one heart medication to help control it better which it seems to be working. I was afraid it would drop it to low but it doesn't seem to have done that. I'm happy it seemed to be a quick fix. I like it with things work really easy.

Radiothon

I did the Radiothon last week for Children's Hospital and really enjoyed it. It was so nice to answer the phone and talk to people with such big hearts willing to help others. One man from the town I live in called and gave $30 a month. He said he does it every year. It was also nice to meet other families who have similar situations. A few of the families had actually lost children and still come to help out and think they are such a wonderful place. I know we are very grateful to them and would be lost without them.

Summary of Week and Week ahead

Not too much to report for the week. Same old same old. Lots of therapy. Kylee is doing really well. She is standing in her stander for about 15 minutes a day. We are also getting a new piece of equipment called a HOPSA which will also help her with weight bearing on her legs. A lady came out from the state and said she has marshmellow feet and needs to get weight bearing on them. Eating seems to go back and forth some days she does really well and others not so much. We just keep working at it. I am kind of hoping by only feeding her 18 hours a day maybe she would be more hungry threw out the day when she is not hooked up that she will want to eat more. She also has really been doing a great job at letting you know when she likes and doesn't like something which is so nice. She is really into TV lately. The other day I had on a educational cartoon just real plan nothing to exciting and she wanted nothing to do with it. I turned on elmo that had singing and dancing and she laughed and smiled and had a blast. Then one other day I said she couldn't watch anymore TV and changed the channel and she started crying. I turned to cartoons back on to see if she would stop and she did. It is just nice to see her respond to things appropriately and letting he know when she doesn't like something. Not that it means she always gets her way but at least you know how she feels about it. Nothing to exciting for the week ahead. Just therapy and no Dr appointments until September 2nd (cardiology).