Drake started seizing yesterday (Sunday) around 1 pm….. we have seen more seizure activity since we have been here but due to all the changes, this is to be expected. Drake’s system is so sensitive that when he has the slightest change (constipation, sleep schedule gets off, anything) his seizures start to rise. Also, we knew that his body transitioning into ketosis can cause an up tick in his seizure activity until it leveled out. Sometimes this takes weeks, sometimes this takes months…. we have no way of knowing.
Drake had more seizures yesterday than we have seen in months…. and they are the really hard ones that have returned. We had to give him a rescue med around 10 pm because he was struggling and when he seizes like that they will not allow him to sleep which just exacerbates the entire process.
He did sleep a good bit last night and we have only seen maybe 3 or 4 seizures since then…. but he is pretty out of it this morning. He is not taking his milk….we are having to do everything through his Gtube, his eyes are glassed over, and he cries this hoarse cry when they took labs this morning instead of fighting and fussing with them….
I am not going to lie….. we are a bit disheartened……
When Drake’s path “forks” and all the things don’t make sense and there are so many things that we “can’t do” because of the little knowledge and the equipment we need is not available…… this is when we just have to fall back and rest in God….. There are a lot of things we don’t know about Drake and this cruel disease…..
so we rest in the things we do know….
God is still on His throne….
He has not left us and He loves Drake more than we can fathom…..
He would never allow Drake to suffer without reason…..
Days like today….. this just has to be enough…..
We are awaiting labs to see if his blood can tell us anything…. the important test for his glycine takes minimum 24-48 hours (this is rushed) because of the process.
Days like to day is when I want to flood congress and the different companies to beg them to make a machine to test glycine just like the glucose meter. We could have Drake’s levels in a matter of seconds and we would know how to move forward instead of always being in the dark…..
God is bigger, this fork does not surprise him……and this too God will use for His Glory…..
Please pray for Drake’s body…..its amazing how different each hour can be with him….
Please pray for wisdom on what is going on with his levels…..please pray his body is protected while we wait…. please pray that we don’t assume it will pass and cause him to suffer due to lack of knowledge…..
Thank you all and we love you and will keep you updated….
Eric and Tarah