WE ARE HOME!!!! As in we slept in our own beds last night. I never knew what a comfort home could be before we began this journey.
This will be a quick update because I am still exhausted and trying to catch up around here. Alex is doing well. He is now on TPN and lipids several times a week to try and get some meat on those little bones. We are also still working on getting his new seizure med up to a decent level so we can wean off IV seizure meds. He is having a little nausea and stomach pain while we try and get feeds back to baseline. Other then that he is feeling pretty good. Emotionally he is hanging in there. He is still talking about Samuel and Heaven quite a bit. He has been very sweet. He seems to know who is having the hardest time dealing with Samuel's passing and he is showering those people with extra affection. The death of a friend (especially one with the same disease as you) is not a reality any 6 year old should face.
I am doing okay. Missy and I had a good night talking through our feelings. We also took a ride out to the cemetary to visit my little buddy. Missy's extended family is like my own and it was so nice to be able to have some down time with them. We are all anxiously awaiting our next visit.
And so today we try and get bacl to "normal". (I am not sure anyone would call our life normal!) We will pick up school. We have a crazy month ahead of us. We have some cub scout events, a birthday party, playgroup and the month culminates with mito camp. I will be praying that i can keep my Bug healthy to enjoy all this fun we have planned.
I promise to be better about updating again!!!