April 27, 2013

April 2013 has been a busy month.

The last three weeks have sort of been a haze of therapy and doctor appointments. Having a full calendar along with all the dreary weather hasn't made April feel very "springy." I am looking forward to nice sunny warm weather so Ethan and I can get back outside everyday even if it is just for a 30 minute walk/stroller ride.

We are also continuing to wait to find out what is going to happen with our insurance coverage of the formula. We are hoping to have more answer within the next 60 days. The supplier has up to 30 days to bill the insurance and then insurance has up to 60 days to reimburse them, so we won't know until that happens if the insurance is actually covering the formula and if so, at what rate. Let's just say it is a BIG headache!

Monday, April 8th

  • Ethan's vision therapist came to our house.

Tuesday, April 9th

  • Ethan's hearing therapist came to our house.

Wednesday, April 10th

  • Ethan saw the pediatric surgeon at Carle. We were concerned about his feeding tube site that hasn't been healing properly. The surgeon thought it looked good and although their is more granulation tissue than their should be, that he was glad that there was no sign of infection. He also cleared Ethan for bathing! :)

Thursday, April 11th

  • Ethan had physical therapy, feeding therapy, and had his visit with the dietitian all at the house today. 

Tuesday, April 16th

  • Ethan returned to STEPS! He seemed excited to be back at school and around other kids and to be with his teachers and therapists. I think he was getting pretty bored with being home with mommy all the time. He had missed over a month of STEPS and therapy due to being sick, the hospitalization, the surgery, etc. Ethan tends to work a lot harder for his teachers and therapists at "school" than he does at home. STEPS has been a great thing for Ethan and for me as his mommy.

Wednesday, April 17th

  • The home health nurse came for a visit and then we headed to Carle for an afternoon appointment with Ethan's eye doctor. The visit was pretty uneventful, especially since it is an hour drive there, we waited for over half and hour to be seen, the doc spent less than 10 minutes with Ethan, and then we drove an hour home. BLAH! The only good thing was that the doctor was glad to see that Ethan's eyes are staying aligned/straight.

Thursday, April 18th

  • Ethan had STEPS in the morning. 

Friday, April 19th

  • The dietitian came to the house and Ethan gained almost a pound! He is even back on the charts --- 3rd percentile! At least he isn't losing weight anymore. He is still down from where he was six months ago, but hopefully we will start seeing steady gains and growth now that we have a way to get him the nutrition he needs.

Monday, April 22nd

  • Ethan's hearing therapist came to the house.

Tuesday, April 23rd

  • Ethan had STEPS in the morning.

Wednesday, April 24th

  • The home health nurse came for her last visit/check.

Thursday, April 25th

  • Ethan had STEPS in the morning.

Friday, April 26th

  • Ethan had an appointment with the GI at Carle. Ethan's site still has too much granulation tissue, so the nurse used silver nitrate to "burn" some of this excess tissue. The doctor also said we are on track for Ethan to get the tube switch to a button in 3 to 4 weeks! We are excited about this, but at the same time are not looking forward to another hospital stay, sedation, and surgery. Ethan will be admitted to the hospital the night before the procedure so that they can have him on IV fluids to prevent dehydration and so he can receive IV steroids prior to anesthesia and the surgery. We should be able to go home the same day as surgery though and continue stress dosing steroids at home as directed by the endocrinologist. We are hoping that life will get better when Ethan only has a small button and not a 15 inch tube sticking out of his belly.

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