Going Crazy......

It's 1:30 am and Jace JUST finally fell asleep!! Why?

Anyone that has children know once they are overtired they are impossible to settle. I am now wired (only reason I am updating this late) from fighting with him to get him down and from being beyond annoyed that the nurses wanted to "play" (because he was so playful and alert). Grrr.....it took everything in me to not say something rude (they were such sweet ladies) and ask them to please do whatever it is that they need to do and let him get settled down. Changing rooms is enough distraction but to do it in the middle of the night is a whole other story.

We did not see the neuro team today after the EEG. JB said that Jace had one of his episodes right in the middle of the EEG - this is great since we wanted to see what was going on when he had an episode. The primary care team did stop by and tell us that the EEG didn't show any difference from Tuesday. However, the neuro team will be able to explain this better to us, hopefully tomorrow (or well today since technically it is Friday). The good news is Jace went from having 11 episodes a day to only 4 today!!!! His last episode was at lunch today. Since then we have only seen a few moments where he had the blank stare on his face that he normally gets before going into the head drops but they never progressed into the drops. It seems that we may be headed in the right direction but we shall see. He has had the tendency to have a good day followed by the next day being terrible. I believe prayers are being answered and we found THE medication he needs to battle these seizures. The the blessings begin to pour in. I believe prayer - especially specific prayer! I pray that Banzel works, and as Jace gets bigger it continues to do the job without having to increase his dose and never having another seizure with in the allotted time before we can wean him. I pray we wean him off the medication and the seizures, worries of delay, and any other scary issues are a thing of the past! Please pray these with me in the Lords name!

JB went home again tonight and switched off with my mom. He is going to work tomorrow but will be back up here if we are not discharged. I know Jace misses him. Jace is so tired of me and he is getting to that phase where Dada is who he wants. He was all about Mama for 12+ months - Its Dada's turn! :)

Speaking of JB - I have to give him the credit for being the original pushy parent and giving me the courage to be pushy as well. I have always been the type to trust the doctors and go with whatever it is they chose to do or try. I always thought that having a doctorate degree meant A LOT! Until recently I never fully understood the term "Practicing Medicine". Doctors practice - so much of the medical field has the potential to be very subjective. Knowing this helps me to realize that JB's pushiness and skepticism is valid. It has rubbed off on me - especially when doctors go against my motherly instinct. I could not compete in this fight without JB on my side. He has been invaluable in this journey. He calms me when I need to be calm and he lights a fire under me when I need to pick it up. Thank you My Sweets!

So, to clarify some things that were recently asked - we are at Children's Memorial Hermann (CMH), not Texas Children's. We were in Texas Children's Hospital (TCH) back in January before we had a neurologist that we regularly went to. His neurologist practices (there is that word again LOL) here at Children's Memorial Hermann. After being here at CMH - I have become slightly partial to all the UT MEd Students. You all know we are HUGE Texas fans! Not only are the Texas athletes good but so are the doctors! :)

The main differences of here vs TCH is how the hospital is set up. TCH has special floors for certain types of patients. All the specialties have their own floors - CMH does not. Scheduling for tests at TCH is a nightmare, even for the very young that get top priority - at CMH when you are scheduled you typically get the test done close to the scheduled time (especially if it requires the child to eat nothing before hand). The service in the cafe and such is MUCH friendlier at TCH than the cafe thats associated with CMH.

BIG sleepy sweet cheeks

Jace's favorite napping spot!

So far Jace's eyes have not become worse...they are still goopy but they are not bad yet. If I were at home I would not go to the dr yet for them. I may have used the drops I have at home since I already (still) have them from the last go around with this eye crud.

Well I think this is all I had to say - I am tired so its difficult to think straight. I am finally wound down enough to try to lay down for the night. I am curious to see how late Jace will sleep considering he has NEVER been up this late (I must say he was in a a great mood for being up so late).
Wonder if I will be able to get to sleepy without the Veggie Tales Silly Songs that are stuck in my head.

GOOD MORNING NIGHT!