Visits, Meetings, and Day to Day

This week Katharine’s grandparents from Florida came to visit. This was the first time in several visits that Elias has not been in a hospital. Actually, he was home one other time, but was very sick and we ended up being admitted that day. It was great for them to see Elias thriving and happy oh, and walking all over the place! He had such a good time being a little ham and showing off. We are thankful for that opportunity.

Just a few items to quickly update everyone with. As we just mentioned Elias is officially a walker and quite good at the recovery and balance. He is loving his new found freedom. This past week we had our transitional meeting with the early intervention team and the public schools. Hard to believe we are already talking about school for Elias! He is slated to begin pre-school next fall, which is a half day program at the schools. Elias will more than likely be home-bound because of his continued immune suppression issues as well as the risk with his airway. The pulmonologist will evaluate again in the summer, but is not optimistic that status will change. At least it wasn’t a stern “NO!” Given that likelihood we discussed that with the school. They are able and prepared to send a teacher to our home for Elias in addition to continuing OT, PT, and Speech at a more limited level than we are receiving now. Their official assessment of him will be in February with a formal Individual Education Plan (IEP) meeting in April. It all sounds very accommodating and well supported. We have been told by several people that we are in a very good school district. If that holds true we will be very fortunate and blessed.

Elias has had some issues this week. He has tested positive for C-diff, so we are treating him with vancomycin again. Then we thought he was catching a cold, which would not be good for many reason. Fortunately it seems to have vanished as quickly as it appeared. We have started to see the suction need increase though. Last evening over a six hour period I suctioned him over thirty times. That is a lot of suctioning, but ‘tis the season! Last but certainly not least we are preparing for Elias next surgery very soon. This will close the colostomy! Hurray! We will be very happy to see this go away and it will be another huge step and change for Elias! We are hoping that things go well with the transition. We are not certain how long it will take for us to determine his continence success, but that is one concern that still exists. Tagged on to this surgery will be several other doctors doing various procedures. We appreciate all the thoughts and prayers in advance for a quick and smooth recovery for our strong little man as he endures yet another round of surgeries.