Hints about HOME!

Lex has been on a pretty organized schedule the past couple of days. He prefers having seizures in the afternoon apparently. That's not necessarily a new development though, he's been doing that for a couple of weeks now. Yesterday was a little different because the seizures were a bit more spaced out and his SATS weren't dropping under the 50's and they all lasted under 1 minute. So, considering the fact that they are actually saying the word 'home' to us (more info on that later!) I feel like it's important for us to get a feel of what kind of pattern that this is, rather than throwing Ativan in him everytime the nurses get nervous.Despite my opinion on this the nurse did give him Ativan again yesterday. So we still don't know what these seizures are doing. After speaking with the neurogeneticist, whom i like to call Dr. Bowtie, this morning about my concerns with this he completely agreed and said that he would change the guidelines for which Ativan was given. Dr. Bowtie has had a very agressive attitude this week about getting Lex 'fixed' and getting him home, so naturally I love him. He has gotten the surgery team to finally agree to take a look at Lex again about getting his G-tube and Nissen, since they have been scared to death of him for weeks now. They haven't came by yet but Dr. Bowtie expects them to take care of him early next week!So it will be great to have that taken care of. Other opinions that the doctor shared with us today: 1.)Lex is about as stable as he is going to be for a while 2.)Children who have seizures with desats often will grow out of the desats after several months and then have 'different' seizures-not necessarily worse or better, just different. 3.)We are capable of caring for him just as the hospital as been at home (which I had already figured out for myself-but it's nice having doctor's here as backup!) 4.)We will have equipment we need at home to care for him (oxygen, mask, feeding pump, etc.) 5.)We will more than likely end up having to make multiple trips to the hospital because of Lex's condition (but this is not uncommon) 6.)He is comfortable with us going home as early as a week after surgery. So, a lot of information to take in at once, right?! Some exciting information as well as some stressful stuff. I had already expected we'd be back to the hospital pretty regularly anyway, so this wasn't a shock but it is NOT FUN to think about! I do looking forward to going home, problem is we're not sure where that is at the moment..but that's a whole other blog... So, in the meantime Lex has been doing his physical therapy and getting bath's regularly! He really enjoys both. Can't you tell? Also his Topamax dose has been increased as of last night and his diet is still slowly undergoing subtle changes that we are hoping to display GREAT results. Still praying for large ketones people! Also that this topamax does something awesome for Lex. I just still have such a high hopes and such comfort knowing God is taking care of him. Praising God for the huge improvement Lex has had since we were first admitted, and still praying for NO SEIZURES at all, despite the fact that the doctor's have tiny doubts of this possibility.
A couple of days ago Lex decided to just tell us all about what was going on with him, in a way that was definitely a first for us. So, enjoy this video of him doing just that. Also, you'll see me fidgeting trying to get braces on his hands-he wears these off and on throughout the day to keep his fingers from being shut so tightly in his hands all of the time.

'Many will see what the Lord has done and be amazed. They will put their trust in the Lord.' Psalm 40:3