A few odds & ends

Well it has been a week and really there is not too much to update. Elias had IVIG infusion last Friday and spent Saturday in the blah side, which is typical. We have been working on communication and walking primarily with his therapy time. He really just needs to get a little more strength in the core and some more balance and he should be standing without holding anything soon. That will more than likely quickly be followed by walking on his own. He is doing very well with the push toy but needs some help as he can not really hold on to it because of his hands and arms. The legs are moving well though and that is a great step, no pun intended.

We also heard from the colorectal team and they are looking at doing stage 2 of Elias’ repair the first part of November. We cleared it with pulmonary so things should be a go. We also found out that at least for now we are able to drop from every other week to once a month for IVIG. They will be drawing IGG levels each time and if they dip we will be back to the 2 week schedule. More than likely in the winter months we will do it more frequent as well. Neurology wants to do an MRI soon. We are waiting on the scheduling of that. They want to see if there has been any changes in the brain that may give a clue for the apnea spells. The last one was done 2 day after the very first episode, so changed could be there given their frequency over the past 9 months.

Besides that things have been status quo (knock on wood) and we hope to keep them that way. The dilations are still very difficult and hard to do to him, but it is for his benefit and we just remind ourselves of that. We are looking forward to some fall weather so Elias can get out some more. It has been very hot and humid, too much so for Elias sadly. Hope everyone is having a great summer. We will update again soon!