We apologize for not posting anything most of the week, but it has been extremely busy and an even more stressful week. Elias is fine health-wise. The stress generates mostly from some changes and issues with the nursing scenario yet again. We just can not seem to get a positive handle on that and unfortunately that is something completely out of our hands. We are not going to even dwell on the negatives in this update as they just are not worth putting up. We will say things are not going well and there is going to be rougher days ahead for us if answers and solutions do not come about quickly. Now, on to Elias!
There are some great things to update with our little man. While he is not yet consistent with it he improves everyday with walking. He is very focused on this. So much that we are unable to work on other therapies at the moment. As his speech therapist said, “he is in motor mode.” We were pleased at how well Elias did during Aural Rehab this week. Once we convinced her to let him stand versus sit on Mommy’s lap things went much smoother. He is beginning to make babbling sounds and while we want to see that as a positive sign we have been warned that even children with known profound deafness will engage in that behavior. However, the fact that he is doing it more is a good thing even if there is not any element of hearing at this time still. Which the therapists are still 99% certain there isn’t. It is still cute to watch and hear him do this as he plays. He is doing more mimicking as well.
Elias has been in great spirits the past few weeks. It has been so amazing to watch. He has had some off days and been battling a few issues here and there, but overall he has been very interactive and transitioning into a new play style which of course is appropriate for his age and development. For the first time since he has been walking Elias got to see his physical therapist who has been anxious to see him doing this. He had a wonderful and exciting session. As she put it, the hard part for her is in the past. Now it is about fine tuning and strengthening this ability. Elias progress and spirit this week has been a God send towards providing some relief. We say time and time again how he makes it easier to deal with all these issues.
On the health front here are a few things of note. The mysterious, but nothing to worry about lumps on the colostomy are getting a touch bigger. We are seeing GI soon and will probably force them to look at and identify those. He is also still consistently exhibiting the behaviors of sweating, retching, and coughing with the majority of his feedings. Again something we hope GI will address. The dilation process is entering the next stage in which we will very slowly begin to taper the frequency in which these will be done. We have about 1-2 more weeks of twice a day then we can move into a once a day routine for the next 3-4 months. Assuming no set backs or issues with this process we will be completed with this by May or June of 2011. That can not come soon enough as that is certainly the most difficult thing we have ever had to do. Finally, we are still trying to get rid of a rash caused by his last round of antibiotics for C-diff. The doctors did not order the hold on the prophylaxis antibiotic this time so he was a bit overloaded and it caused a rash. Most of it is cleared but there is still a stubborn patch near his colostomy that we just can not get rid of. We have been told if it doesn’t clear by the end of next week he will need to be seen again. That about wraps up the doings and goings of this week.