He'll be ONE in a few weeks and like always, I'm left wondering how this is even possible. It went faster than ever, even the moments where we were barely hanging on by a thread. We've had a lot going on this past year and this last month was no different.
Infantile spasms have consumed our days (and nights) as Baker continues to receive treatment to get rid of the seizures. He has 3 ACTH injections left and started Vigabatrin, an anti-seizure medication last week. Once he's up to the full dose of the new medication, he'll have another EEG to see if it's working. While it does seem like the spasms have drastically decreased since starting the vigabatrin, I'm hesitant to say for sure they're gone. We need the EEG to tell us that; infantile spasms cause hypsarrythmia which are abnormal, chaotic brain waves. Once the EEG comes back clean, we can breath a major sigh of relief. Until then, I'm a little on edge and possibly going crazy analyzing his every move wondering if a normal reflex is a seizure instead.
ACTH was rough and was made worse by the fact that it wasn't even working. A few days after he started, Justin and I both agreed we felt like the spasms had stopped. It was successful. Then, Baker had a really bad day right before the 4th of July, almost 2 weeks after starting ACTH. It was like all of this medicine had finally caught up to his little body and he couldn't handle it. He was inconsolable, agitated and soooooo incredibly tired but his body wouldn't let him rest. He cried for basically 13 hour straight, it was awful. That was also the day we started seeing spasms again. By the end of the day, the only thing I could do was cry right along with him. It was a very helpless, hopeless feeling.
He had a repeat EEG that confirmed the ACTH was not really helping clear up the hypsarrythmia which led to starting the vigabatrin. We went to Sioux Falls for the July 4th holiday - Baker had a few rough days there and we started to wean the ACTH that Friday. Slowly but surely, we started to get our boy back.
These smiles - I can't even tell you how good it feels to see these smiles.
You can tell he's feeling better! These last few days, he's also been more active - kicking his legs and batting his arms. He also seems to have better trunk control and more willingness to put weight on his arms during tummy time. All reasons I'm hopeful the vigabatrin is working.
He was sitting so well during these pictures! The ottoman was behind him for support but he did an amazing job shifting his weight and catching himself before falling forward. We're starting and intense "sitting bootcamp" this week to see if we can get him sitting by his first birthday. Ha! It'll be close but I think he can do it!
Another struggle this month (and really, just since starting ACTH) has been sleep. The poor kid hasn't napped well in weeks and his nighttime sleep is all jacked up - no paci, only bottles; no rocking, only bouncing; wide-awake parties from 1-3 am! I really hope this gets back to normal soon!
He's also made some progress with the helmet this month. The back of his head has rounded out nicely but he still has some asymmetry on the right back right side so our focus has been trying to get that area to "pop" out. A few more weeks but hopefully the end is near!
Oh, Baker. You are one tough cookie and seriously never cease to amaze me. You've been a trooper through all of this and we're so proud of you.
No comments