So lots and lots has happened.... to start one of the most loving papa's, father and husband (mikes dad) passed away Friday the 3rd he was battling cancer and had a massive heart attack. Its so hard knowing that he wont be here for all the things that life has to come. Pappa you will be missed greatly.
So we have started a wean of one of Aidens seizure drugs and as much as it scared me to death to do it is already making an improvement. I asked all the os moms about it and they all said that when their kids came off of it it was like they came out of a fog, and that they were just sleepy on it, i thought well Aidens not sleepy and didnt appear to be in a fog, but boy was i wrong! We have only gone down 1 1/2 ml and I already notice that he seems to be more aware and is trying to reach for things!! I am so excited to see what happens when we are all the way off of it!!!
We had a feeding apt at ohsu and will be scheduled to go in for a swallow study to make sure before we pursue more solid foods that Aiden is not aspirating on any food. I am scared to death that they are going to say it is not safe for him to eat by mouth and we will have to go to a g tube. We have worked so long and hard to get him to eat without a tube... so I need prayers that he will not require that...
so they also evaluated him and he is still at about a 4-5 month old developmentally, is almost almost so close to rolling over!! I pray that he continues to make progress and develop
Thank you to everyone who still keeps updated on our special little boy!
I'm starting this blog to keep family and friends updated on our little man Aiden's progress through his fight with Ohtahara syndrome.
