More Janet Time!

Here's the picture of the day. Arianna just loves her doggy Angel!

This morning we had Janet, our OT, out at the house. She helped feed Arianna breakfast and threw out some more ideas on how to keep her attention on eating. She asked how long she normally eats and I told her I can keep her eating, or at least at the table, for maybe 10-15 minutes. She told me she was talking with a friend who is a nurse at one of the local hospitals in town and works with with peds. She told her about Arianna's situation with her eating and asked what she thought. This nurse apparently works alot with heart kids so she knows alot about them. She said sometimes heat kids have a drop in there pulse ox when eating, which causes fatigue and the child stops eating. She was going to do some research on TOF and get back with Janet, since all heart defects are different and effect children diffferently. Today Arianna sat at the table for maybe 25 minutes eating then wanted down. We played on the floor with her and about 5 minutes later she started showing showing signs that she was hungry. When I asked her if she was hungry she signing 'eat' so we gave her some crackers to eat. This made Janet feel more adament about getting her pulse ox checked while eating. She said she is showing signs of fatigue and needs this to be checked out. This could also explain Arianna's need for longer naps lately. Over the past 1-2 weeks I have noticed an increase in her nap time and at one instance she slept from 6:15pm till 7:45am. When I tried to wake her up she acted very out of it and wouldn't wake up. I have been worried about this lately and hoping this was just a normal thing for a heart child. I know the older they get the more active they are and their bodys will require more rest. We don't meet with the cardiolgist until next month so I was trying to wait until then to talk about this. Janet is going to contact Arianna's pediatrician about the pulse ox machine and see if we can get one for the house. If she doesn't get a response from him then she will contact the cardiologist.


The other thing she was wanting to get done was a swallow study. The swallow study is a x-ray exam that allows us to see how the swallowing mechanism works using barium. Janet will also be talking to the pediatricaian about getting a referral for this test. Normally a speech therapist recommends this test but since we are having difficulty getting a speech therapist, Janet is recommending the test. The same nurse that suggested the pulse ox to be checked also suggested the swallow study to Janet. She told Janet that sometimes when kids have heart surgery they can damage some muscles that help with swallowing. This could very well be the instance with Arianna.


I am so thankful for Janet and all the extra looking into that she is doing. We definintly have seen an appetite increase with Arianna but for some reason she cannot take in alot of foods. We are trying to do everything we can to avoid a feeding tube and Janet is definintly working with us on that. Arianna has really become attached to her and kept giving her hugs before she left. I never knew how close you could become to these therapists, they are almost like a part of our family. Always there for us and willing to go the extra mile if needed.


One more thing Janet did notice today was Arianna's low muscle tone. She says that she has built more over the past few months but is still very wobbly in her standing and overall upper body stregnth. She asked if we were still seeing PT and I told her we only met with PT once and she didn't feel like we needed follow up. Janet isn't too concerned right now and said this should improve with time. Now I am begaining to wonder if we should have continued PT. I guess we'll just keep an eye on it and if Janet see's it not improving then we can reccomeend another PT eval and get ongoing therapy. Right now we are really trying to focus on her eating and putting some weight on her. Right now we just wait to hear from Janet, or the pediatrician, and keep doing what we are doing.


While Janet was here Arianna signed 'book' for the first time. Janet asked how many words she can sign and we figured out it to be 13 words. Here is a list of the words that she can sign: Milk, eat/food, banana, more, all done, hi, bye, dog, cat, fish, thank you, shoes, and book. I have a feeling I'm missing another one but I didn't realize how much she did sign. Its like she is picking up a new sign every week. I will have to buy the Signing Time videos soon to keep up with her. She has the baby signing times and is watching one right now.

Thanks for checking on us today and we'll post again soon!