So I was wondering why I am so tired and exhausted, as I often do when I feel that way. And I thought - Oh, yeah! It's because I'm in my 3rd and final trimester and I have a 14 month old. Duh! (No, I'm not forgetting about Gabe. But he doesn't wear me out.)
Does my 14 month old run around and get into things? No. But I'm running him around to different therapies and appointments. Does my 14 month old make a mess getting food everywhere? No. But it's equally messy when he throws up. Does my 14 month old scream at the top of his lungs? No. But he lets me know when he's pissed by crying and whining. So, see...it all equals out in the end. And the sum of it all is one exhausted Mama Bear!
Today was good, though. Another great OT appointment with our favorite OT. Just since last Tuesday, she's noticed changes in him. She studies him so much and I love watching her watch him because she teaches me things I didn't know about my son.
Christian also got his first hard chamber HBOT treatment in about a month! And while I was there I had his EEG read (for the first time, apparently). Dr. Henrick, his new neuro, sat down and explained to me what it all meant. Here's my best recollection in extremely broken lay men's terms...
Christian's EEG shows spikes. Traditional seizures show a spike, flatten for the length of the seizure, and then the wave plummets. To my understanding, it sounds like a plateau. She said his spikes don't have this. They don't have a duration or a pattern so they aren't really consistent with seizures. She said it's abnormal activity, but that's to be expected in anyone who suffered brain injury or any sort of trauma to the brain. She also said that's the same reason it's an environment for seizures to occur. But she's not convinced that's what's going on.
Dr. Henricks also commented that she didn't think the suspect behavior (the eye rolling) was a seizure after observing it. She said it looked like a lack of coordination in the senses. I asked her about increasing the meds like it was suggested by Dr. G. She said she'd be comfortable with that because the oxygen during HBOT speeds up the metabolism, thus metabolizing the medicine faster. So if we increased the Keppra, it would actually be like giving him the same dosage because of the metabolizing factor of the HBOT treatments. But she said it was up to me. She said she's not concerned about the activity on the EEG. I could hold off on increasing the meds and see what his brain does during recovery or I could increase it now. She's fine with either way. So I think the final verdict is that I'm going to wait to increase. If anything that looks peculiar in his behavior resembles seizures, I'll increase as directed.
Something else she said kind of made my day. But when I repeated it to people afterward, it didn't seem as big of a deal to them. Dr. Henricks told me that while there is abnormal brain waves, there are also normal brain waves and normal brain activity and in her words this is "hopeful." I'm sorry...did she say "normal?" To me, this is such good news. I had prepared myself to hear that the EEG showed completely abnormal brain waves and that was it. I did NOT expect to hear anything about being "normal" unless it was to explain that he was far from it. This is so profound to me because the night he was brought in, his EEG showed almost flat brain waves. 12 hours later, there was activity all over the place, still classified as extremely abnormal by Dr. G. So to hear that an EEG showed anything resembling "normal" waves is such a moving moment for me. And I don't really care if it's just one single normal brain wave - which isn't the case - it's still a miracle to me. It means my baby's brain is HEALING.
I believe there is more of this healing to come. He has weeks where it's hard to pinpoint any improvement and then he has weeks where I can't stop counting the new things he's doing. For example, the manager of the HBOT center met Christian about 3 weeks ago and shook his keys in front of him to get his attention. Christian just stared off and didn't react. But he shook his keys at him today right out of the chamber and Christian responded immediately. He's trying to lift his head a lot, so much that he throws his head back, catches it, and starts crying because he probably hurt himself. I swear it's like having a newborn! His right hand is completely open and reaching and grabbing and his left hand is starting to loosen and open up. He just seems like a whole new man this week!
The other great thing is that Dr. Henrick will do a repeat EEG in 6 months to measure progress. She's in the middle of completing studies on HBOT effects on veterans and she explained things that made it seem that she likes to set precedent. Especially if it changes how the medical and insurance world sees HBOT. She's hoping that with her current study, she will be able to prove progress due to oxygen therapy, making it more likely to be funded by insurance. Go Dr. Henrick! She also made sure to track us down before we left just to see how Christian was after his session and to say goodbye.
God has put opportunities and people into our lives on purpose. And it's so evident when you choose to see it. Sometimes I want to laugh because there are so many signs that God has His hand on Christian. I mean we needed more oxygen therapy and we have what we need. People made it possible for us to have an HBOT chamber at home in a matter of about 2 months. And in a matter of weeks we were able to get more hard chamber treatments. God knows what Christian needs.
In church on Sunday, the pastor talked about abiding. He said the apple tree doesn't work to produce fruit, it just "abides," and, in turn, produces apples. It lets God work through it in order to produce fruit. I know that as long as I listen, I will hear God. And that there's no need to stress or push, we just need to abide and watch what happens.
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9 comments:
Wow Shauna! That IS exciting news and I agree with you that it's BIG news!!! Normal brain waves- excellent!! I'm sure there will be many more where those came from!!! I would have wanted to shout that from the mountain top if I were you!! :-). I am so incredibly happy and SO excited about the news!!!
THIRD trimester already??!! Wowza girl! Where the heck does the time go!?!! I'm sure you've been so busy it's flown by for you too!!
Thank you again for sharing your life with us again in your blog. I truly look forward to reading it. GO Christian!!! Keep improving big guy!!!
AWESOME!!!!! I love reading you blog(but don't have alot of time to resond alot)...it's so great to hear about all of Christian's improvments and I LOVE your positive tone...God is Good and you are proof of that:) 3rd Trimester....Lola will be here in no time:)
Shauna, I am so happy to hear such great news! This has really made my day! I am so glad you found Dr. Hendrick, she sounds like an amazing person. I can't believe you are already in the 3rd trimester. Don't forget to take some time for yourself. Love you!
This is such exciting news I'm very happy for Christian. Way to go!!!
you guys are amazing!
Awesome!!
Shauna, I think NORMAL brain waves IS a big deal! I hope to see more and more of them! That's such great news!
Hey, got any new pictures of your handsome man? I'd love to see some more!
Normal brain waves are awesome! Go Christian! Hope you're taking some time for yourself, too, Shauna. Give your tired feet a nice few hours off, whenever you get the chance! Big hugs to your while family!
This is the first post I read of your blog, so I don't know the story of what is going on with your little boy, sorry. However, even from this post I felt the same hapiness as you. I somewhat know what you are going through, and how exciting it is to hear even the slightest of good news. I am praying for you and your son and wish you all the best with your new one on the way.
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