Doctor, Doctor Give Me the News

Last week we had our ECI evaluation and it took 4 hours! They reviewed every medical condition, every drug, every developmental thing about Amelia. In the end they decided to recommend "developmental therapy" which is kind of like physical therapy for her (Her first session will be this afternoon so I'll let you know how it goes).

She was eligible for feeding therapy (they call it OT) and also physical therapy, but because we were already doing private therapy and there are only so many days in the week we are doing that once a week. So now she has a therapy every day. They assessed her as having the developmental skills of a 3-6 month old overall...I really hope with all this therapy that she will make a lot of progress and we can at least catch her up to the 6-9 month category soon. I don't know if it is realistic, but I am hoping she can be crawling in the next 6 months.

We had a barium swallow test this week at the hospital this week to give us more information about Amelia's fundo. They put 120 ccs of barium into her stomach (this is how much she is getting in a regular feed) in 5 minutes, when usually she has been getting her feeds from anywhere between an hour and an hour and a half and...NOTHING. She did not retch, gag or choke. She was also laying flat on her back when they did the test. I asked them to sit her up and see if that made a difference. She started to cough a little, but nothing like at home. Her fundo is intact. I am happy about that of course but now I am perplexed as to the problem. The advice to people with reflux is to sit up but in a reclined position. She does not do well that way.

The only suggestion I got from the doctor doing the test was to lay her on her right side because it helps the contents of the stomach empty faster. So I went over to the pediatrician's office and had them page her and I talked to her about it. She told me to give her Previcid again and this time she upped the dose to adjust for her weight.

After the test we met up with her music therapist. She had sent me an email note asking me to tell her why I felt music therapy was worthwhile for Amelia. The music therapist mainly works with older kids, a lot of times in group settings. Her boss was not sure about the benefits of working with NICU kids. So I wrote stuff out about it and she is going to pass it along. I really hope she gets to continue working with older NICU babies. Amelia loved her time with chimes and bells and having someone play and sing to her.

That day they had Mickey and Minnie there from Disney Stars on Ice, so Amelia got her first glimpse of Mickey and Minnie. They did not do a performance, but it was just a photo op. I would love to say she got her picture taken with them, but there was a long line and I decided I would stroll up at the end of the line after talking with the music therapist, but when I looked up they had alredy taken off. They have a tight schedule apparently and had already high tailed it to take off their costumes. Drat.

Then we went downstairs to finally visit with Nurse Amy. It was great to see her again. She gave Amelia lots of kisses and cuddles. We also saw more repsitory therapists and Nurse Preetha and front desk lady Shelby! We have now seen all of her daytime primaries and we can go away for a while so people will miss us again.

Last week we had another session with SLP who works with Amelia's mouth. She had a very good session with her and was able to get a variety of textures and objects in her mouth.

We had our first session with PT yesterday and Todd was able to come. She worked mainly with building up her core muscles and getting her to lift her head up more. She thinks that until we can get Amelia's oxygen requirement down more that it will be hard for her to make a lot of progress in the standing and walking because she struggles so much just to breathe.

The past 3 or 4 days Amelia has had a lot of snot. It has been very frustrating because she is constantly mouth breathing and coughing, cooughing, coughing. Now Todd and I think maybe this is the reason why she is gagging, retching and vomiting. She is trying to cough and clear the secretions but ends up gagging on them and then because of her strong gag reflex, it all snowballs from there. Now why all the snot? Is it allergies? Is it a cold? I think it is a cold. She has had no fever and the secretions are clear. I read that with a cold the secretions start out clear but eventually turn yellow and green whereas an allergy it will always be clear. We haven't gotten to the colorful phase of her secretions yet.

The bulb suction has been getting a work out and I am trying lie her on her back when she feeds because this seems to help keep her from the coughing which eventually turns into the gagging, which turns into the...you get the picture. Anyway it doesn't seem to be in her chest...she has been keeping her satts up and she seems awfully young for allergies. I did see in my research that there are a couple of allergy medications that can be given to babies as young as 6 months. Today we have a pediatrician appointment and hopefully she will be able to tell what is going on.