Today we took Tucker to see the neurologist, he had an EEG at 1 and then a consult with the doctor after. Poor baby, we had to keep him up late last night and then wake him up early, AND not let him take a nap. Luckily he was great about it...till right before the EEG, he wasn't so happy then lol. I thought ahead and brought a bottle knowing that would put him to sleep, HALLELUJA! It worked!! He slept through pretty much the whole thing, and was so exhausted he didn't want to wake up afterwards, that was until she started taking the probes off of his little head...didn't fly with him. He was NOT happy in the least. We had to wait about 45 minutes for the neurologist to review the findings of the EEG...which of course drags sooo slowly when you're waiting to hear if your baby is having seizures or if there is something more serious going on. He comes in and sits down and starts asking us questions about Tucker's stay in the NICU (refreshing his memory since it had been a while from the last time he saw him), and just getting as much information as he could. We talked for a little bit about the jerks Tucker has been having, and then came the dreaded moment; "let's talk about the EEG, since that's why we're meeting." And I could tell by the look on his face it wasn't good news...he told us that the results were abnormal, there are spikes and clusters of activity that shouldn't be there. Basically indicating that there is some sort of seizure activity going on, and it's not something that can be ignored. He informed us that there is activity going on while he's sleeping which isn't normal and a lot of other terms I couldn't remember even if I wanted to...all in all, not a very good outcome. The jerks (myocolonic seizures or jerks) are a stepping stone to a more serious condition known as infantile spasms, which causes a lot of damage to the brain if they get to that stage. We came back to the fact that his head isn't growing the way it should, which he thinks could be an indication that at some point his brain was deprived of blood or oxygen for enough time to cause it to atrophy, making it difficult for his brain to grow the way it should. This could explain all his significant delays. With all of his delays, the seizures and abnormal EEG, he thinks he may have a form of CP, but can't say how severe or what it will effect, if it is in fact CP. I think that's where my heart dropped to the floor. The words I had dreaded hearing had just left his mouth, and it crushed me. He agrees the best thing to do next is to get his MRI ordered as soon as possible...and he started him on phenobarbital again. He's pretty convinced that the phenobarb won't stop the seizures, but he wants to try it first since it's the safest thing to do. He said we have to get these stopped before they get worse. If the phenobarb doesn't work we go back and meet with a dietician to try a diet that is supposed to help with the seizures. After that we go to a more powerful drug that has some pretty significant side effects...which scares me more than anything.
We went to visit the NICU after our appointment, and I have to say that everyone there is the most wonderful support group you could ever ask for. They were so excited to see Tucker and how big he was, and you could see the hurt in their eyes when we told them what Dr Birnbaum had said. There's a reason he's alive today, and it's because of how loving and caring they were to him...without them, he wouldn't be home with us today. I can never thank them enough, there are just no words to express how much they mean to us. I made it through all day without crying...until tonight. I had to give Tucker a huge dose of phenobarb (the first dose is always a big one) and I was sitting rocking him listening to our Disney music (I'm lame, I know!) and When You Wish Upon A Star came on (I already said I was lame, bear with me!) and I couldn't help but cry. I wished upon every star in the sky that he would come home, that God would let him stay with us, and here he is. And regardless of whatever label they put on him...he's perfect to me. Until we have the MRI done, we won't know how serious his condition is or what else is going on, there are no certainties yet just more unanswered questions.
I'm sorry I hadn't updated everyone on what was going on, but I guess I figured if I didn't type it and put it out there, it wasn't a serious as I was afraid it was. I don't know if that makes any sense, but I had to be in denial for a little bit about it...I couldn't face it yet. I just wanted to pretend he was just a little bit behind but he would catch up and be fine. He still could be, whatever "fine" or "normal" are. Anyway, I'm sorry this is so long...I wanted to let everyone know what is going on. I'll update more when I know more. I love you all...we wouldn't be here without your support!
"If God brings you to it,
He will bring you through it.
Happy moments, praise God.
Difficult moments, seek God.
Quiet moments, worship God.
Painful moments, trust God.
Every moment thank God."
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