Friday, February 26, 2010

HBOT Update - 40 dives completed!

I wanted to capture some of the changes we've seen in Emma since we started her 40 rounds of hyperbaric oxygen therapy (HBOT). Emma's first dive took place on Dec. 21st and she finished her 40th dive on Feb. 12th. Her initial dives started at 1.3 ATM and we ramped her up to 1.5 ATM of pressure over time. Nearly all of her dives were done alone with me or Chris providing ample entertainment from outside the chamber.

I kept a journal of changes we saw during the course of treatment and we are also hoping to see continued changes in Emma. I wanted to keep the journal since some children see amazing changes, some see moderate changes and others see no change at all. Going into HBOT we knew there was not a good test to predict what category Emma would fall into but we decided we had to give HBOT a chance and hoped that Emma would fall into the amazing change category.

It's our understanding that it could take up to 3 months for us to see results from the course of treatment. There are various theories about why HBOT works well for some brain injuries and one focuses on HBOT resulting in stem cell generation and how those cells take time to migrate to the effected area of the brain which is why it can take 3 months. In our conversations with the doctor and nurse at the center we were told that, in their experience, the children who show some changes before the 40 dives are completed generally have the most positive outcomes a few months out.

So, what did we see happen with Emma? The main change we have seen is that Emma is so much stronger, especially in her trunk and this is giving her much more confidence in her body. My motto for Emma lately is that "she is on fire!" I hope this continues as my hopes are up and sometimes I get high hopes and nothing comes of it. For now, I'm living in the moment and enjoying watching Emma blossom.

Here are the changes we've seen in Emma since starting HBOT:
  • We started to see changes with Emma after about 10 dives. She was more vocal and played with her voice (loudness, pitch) for a noticeable uptick in the quantity of vocalizations. The girls and I were in the car after about the 8th or 9th dive and Julia was talking to me and Emma was yelling over her and Julia said "Mommy, Emma won't let me talk!" and it was true. I don't think anyone has ever thought to shush Emma at all - just the opposite with us trying to get her to make vocalizations - and it was amazing to me that I was thinking the same thing as Julia! Emma is still pretty quiet compared to typical hearing children but we are so happy to hear Emma doing some jibberish talk now.
  • On New Year's Eve, Emma spent a lot of time trying to crawl. She has been trying to crawl for a while, but this time it was different. I took a lot of video of her efforts and the difference is that she had a lot more gusto - like she's been desperate to move and with the HBOT treatments it seems like she is much more confident in trying to move more.
  • After her 32nd HBOT treatment, Emma took stepping motions and I posted about that in the Jan. 26th blog entry. Up until then Emma would take a step or two here or there, never multiple steps in a row. Watching Emma demonstrate reciprocal movement with her feet is a huge deal for us and we are excited to get started with a gait trainer and continue to encourage her efforts on stepping which could lead to her walking.
  • Emma is also demanding more table food, non-pureed! This makes me quite nervous since she can't really handle it, but we are working towards getting her onto more "toddler table" food. Emma had shown an interest in table food before starting the HBOT, but it seems like she is stepping up her desire for the food on my plate! I'm not sure if this is an effect from HBOT or if it would have happened anyway, but we don't mind either way. I'm just thrilled that feedings are no longer filled with anxiety for me.
  • Emma is pushing up on her arms now and trying to get into an all fours crawling position. She now can push up with her arms extended while on her stomach for a few seconds at a time instead of only able to push up with her forearms propping her up. I've posted a video below so you can see just how hard Emma is working to get moving!
  • This week Emma sat in a crisscross applesauce position for more about 10 minutes without my assistance. You can see pictures of this here. Last year Emma could only hold the sitting position for a few seconds to a minute or two at the most and I would never leave her side while she was sitting. Now, Emma can't get into or out of the sitting position (falling doesn't count!) and if she moves around in it too much she'll topple over, but she is making a lot of progress towards independent sitting.

As you can tell, so many things seem to be coming together for Emma and, while they may have come together eventually, I think the round of HBOT she completed definitely had a hand in her recent progress. It's too early to determine the final outcome from this round of treatments, but the changes we have seen are a good sign and we hope to continue to see positive changes.

6 Comments from readers:

Anonymous said...

Wow, she is REALLY working in that video! These changes are huge in isolation, but putting them all together it's just stunning. I'm just speechless and so happy for her! It looks like she's on her way...steadily making incredible progress. xoxo

Tara Bennett said...

It all is SO exciting! I can't wait to see what else she pulls out of her hat in the next few months! Sounds like you definitely made the right decision for Emma. She's so lucky to have such an amazing mom who is willing to go the extra mile for her! I love all her progress, it truly makes my heart fill with joy!!!

Jacolyn said...

That is so wonderful!!!

MoonNStarMommy said...

That is such wonderful news!!! It's so exciting when they make progress and manage to show how strong and determined they are!!

You have been given a reward which can be found on my blog. Doesn't matter if you post the awards, give them back out, or not... at least you know you were thought of and appreciated today :)


Kara Melissa said...

Really wonderful stuff! So exciting to see your daughter working so hard and being so excited to get moving. We did 40 sessions of HBOT this past summer for my son who was 15 months at the time. We saw similar improvements. His head control and strength improved, he started opening his hands more, and he started chewing better and eating foods that didn't need to be pureed, like rice, etc. I didn't even realize all of his achievements until hindsight. When I think about when he started doing certain things it was after/during the time of HBOT. We would love to do more. I'm happy for you and all the progress your daughter is making.

Tricia said...

You know, they MAY have happened without the treatments. OR this could have been the little push she needed.

Emmi started B12 injections, and within days went from not being able to hold her head up to sitting on her own. After that everything else just fell into place over time.

I laughed at the part about not being able to talk over Emma. I used to dream about hearing Emmi's voice. Now I catch myself saying, "Emmi please BE QUIET!"