Thursday, April 8, 2010


Apologies for not updating sooner. but Elias is at home. We actually came home Tuesday evening. We were fortunate though. Lucky for us Dr. Wood, Elias pulmonologist was on service. He was concerned about Elias being there and getting a respiratory infection on top of the MRSA blood infection. So again Katharine and I went through more training to learn how to administer IV antibiotics via his central line. It really is not difficult especially compared to everything else we have had to learn to care for Elias! After the antibiotic course is over we will be waiting anxiously as another culture is drawn to decide the fate of his only real access. Praying it stays clear, he really needs that. We will be on the antibiotics for 10 more days every 8 hours with each infusion of meds taking an hour. Totally worth it to bring him home! Elias is doing well, probably the best he has felt in months given the C-diff issues and various other issues. He has been doing wonderfully and has been very playful and full of spunk.

Our week was not over though as we still have several appointments to go that we are thankful he is not in the hospital missing. The big one was the developmental pediatrician yesterday. The appointment went wonderfully and her evaluation is that while Elias is technically scored at a 9-12 month developmental level she strongly believes that cognitively he is age appropriate. However, when you do not eat by mouth, talk, or hear it is difficult to quantify this. This was important because our purpose for bringing her on board his medical team was to help with the BAHA situation or the lack there of with response. Her opinion is that of his therapist and what we have been saying all along. While Elias is scored at that 9-12 month age level simply using those parameters suggest to her that his lack of response is not a cognitive issue. So as we like to say, the cheese stands alone. The audiologist is the only person who feels opposite this. So we are back to trying to figure out what is wrong. In the meantime She is referring us to the assistive technology center attached to the hospital for a communication evaluation. This will help identify what technologies are available to help Elias communicate effectively until such time he can do it on his own. It is a very high tech an reputable center with many cutting edge technologies. This should provide great benefit to Elias!

We got our colorectal surgery (Imperforate Anus Repair) and next ABR date, Mid June. Then if all goes well sometime in August we would return for another surgery to reverse Elias colostomy. That will be a joyous day. We will NOT miss the colostomy at all. As for growth, he is just now back and forth with breaking 17 lbs depending on clinic or hospital scale. Elias is growing lengthwise though. Developmentally, Elias is wanting to stand, BADLY! He can stand leaning on furniture on his own now and is even beginning to do some wobbly step or two cruising along it. Today Elias had PT and his therapist decided it would be a good idea to see what Elias did at the stairs. We have been working on bench sitting to standing and he is doing well with that, so for kicks she challenged him. I’m sure those that know Elias will not be surprised when I tell you that kid crawled/climbed 3 stairs with assistance. His PT was very impressed and we were very proud. He was smiling the whole time too as he climbed towards Mommy who was several steps above. It was too precious to see him doing that. He has learned to use those arms and hands so well despite the differences and it is awesome! Yet again Elias! continues to amazing things over and over.

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