HBOT – Day 15, Session 21

Over 20 visits to HBOT, the point at which we were told we might start noticing some changes. So what are we seeing? Mitchell's eyes seem wider more often. He definitely looks right at you. You can tell he's trying to process what this seeing thing is about. Still wouldn't say he is tracking. We swear his head seems rounder, less flat/misshapen in the back - that way from having less white matter than he should for his age and from his torticollis (wry neck.) He eats and sleeps better. He also thrusts his head back less. That said, there are plenty of times that we look at him and he looks like the same Mitchell as before we started.

HBOT – Day 8, Session 12

Chris, Katie (the boys’ nanny) and our friend Cindy have all taken Mitchell to HBOT sessions. The experience has taken some getting used to for all including Mitchell who now fusses infrequently during the visits. What are we seeing? Mitchell sleeps sounder and is more content. His eyes seem different too. He’s not exactly tracking, but his eyes seem to move faster or more regular. And, he’ll look at your face now on occasion whereas before if he did ever see you it was random luck out if you were up and to his left. It could be a coincidence, but we’ve also caught him trying to roll from back to front a few times. We are careful about observing what is real versus what we want to see. All and all, we’re hopeful at 30% done.

5 Love Languages

Spend enough time with me and I'll eventually reference the Myers-Briggs inventory or the 5 love languages. The later comes from a book of the same title which outlines the 5 ways people like to receive love, care and affection. Typically a person's bias is to give love the way he or she prefers to receive love. The specific love languages are: quality time, acts of service, gifts, physical touch and encouraging words. Of course we humans want doses of all of these from time to time!

Chris leans towards encouraging words. I don't know if early on in our relationship I knew this, but our first Christmas together I happened to give him a gift of encouraging words. Throughout a downtown date, I gave him typed cards each in its own envelope outlining a different aspect of Chris that I appreciated. Instead of the "12 Days of Christmas" they were titled "The 12 Ways of Chris". I thought as special recognition for Chris this year, I'd share the short version with others. Guess what. They all hold true 7 years later. So Merry Christmas to us - life's better because we're together.

(Feel free to steal this idea for the person who speaks the encouraging words love language in your life!)

The 12 Ways of Chris
Planning - I feel valued when our time together is organized.

Consistency - Chris' yes means yes.

Laughing - He has the best laugh!

Openness - We can talk about anything.

Character - Has the attitude to do what's right.

Motivation - Chris wants to be his best and is a person of action.

Reflection - He listens, takes time to process and consider my thoughts.

Strength - Confident, he is not diminished even when acknowledging weakness.

Acceptance - He looks to the best in others.

Values - Easy to respect, our beliefs and background align.

Kissing - (No explanation - remember this was 3 months into dating!)

Optimism - Chris is the ultimate Mr. Brightside!

21 Months Today

Mitchell is 21 months today and on this day he has begun what is known as HBOT - hyperbaric oxygen treatment. He did 2 sessions today and he'll continue through 38 more sessions over the next 3-4 weeks. What is HBOT? It's a medical treatment which introduces 100% oxygen to a patient, using controlled pressure in excess of the usual pressure in the atmosphere. It is already widely used for non-healing sores, lime disease, damage done by radiation and some other things. It's less accepted yet to "treat" neurological issues, especially in children. However the protocol is safe...but time-consuming. Generally, the practice stimulates growth of new cells. Studies of children with CP, brain injuries or autism cite improvement overall sometimes remarkable, other times showing children reaching milestones quicker than a control group of some similarly-abled. But all will admit, it improves the abilities of some more than others.

We've networked with other parents of kids like Mitchell to get an indication of what we can expect. Mitchell's MRI shows decreased white matter for his age which is consistent with what he can do. No cell damage is evident on his brain, but it is possible that there is damage the MRI cannot detect. So promoting regeneration of cells in his brain is a good thing. He also has sensory integration issues. Sometimes he'll definitely respond to a loud noise, other times you can say his name right in front of him and he won't flinch. Sometimes you can get his eyes to focus on you if you are quiet and hold still to his left. Other times, nada. Parents' stories relate how their children hear or see better after this treatment. Again, a good thing.

We're going into this with the attitude that we'll try whatever we can during Mitchell's early years, while his brain is most plastic, to help him. We're considering it his Christmas gift. It's quite pricey and not covered by insurance. We're setting our expectations low. If all we do is get him to see slightly better, think of how much more he'll be able to participate in the world around him!

We'll keep you posted, but we're not to expect much change in him until at least 20 visits. The brain takes a long time to be restored so it's also possible we'll not see any change until weeks after the first 40 "dives" to increased pressure are complete. Wouldn't it be great if we were one of the remarkable success stories?

And Hope Does Not Disappoint

Mitchie's therapists and caregivers are receiving logo-ed shirts for Christmas identifying them as part of "Team Browning". We appreciate this group's perseverance as they work to make Mitchie's life the best it can be. There is a chemistry that must be right when you trust others to put your child in various stretches and positions in order to push him toward improvement. We are so fortunate to have so many wonderful and encouraging people on Team Browning!

The back story is that the shirts reference a bible verse that has been very encouraging to us from the book of Romans (5): "...but we also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance, character; and character, hope. And hope does not disappoint us.."

There was a time when I didn't even want to admit to ever going through any kind of suffering. After all, I am resilient! I am strong! Rejoice in suffering? Yeah, right. But, over the past couple of years, I've learned a lot about the concept of suffering for when your child suffers, you most definitely suffer. And if this bible verse is any kind of an equation for growth, at this point...we're on board. Because hope is a wonderful thing. I wish I could bottle it. Whenever we see Mitchell do something new or different in the way he moves his body, our hearts jump - we get excited. We envision all his developmental issues reversing. This is hope. "And hope does not disappoint us." That is what we must believe. Hope you do too!

'Tis the Season

So much happening! This weekend we went to a holiday party today at the Association for the Blind and Visually Impaired. A nice event. Shown are pictures of Mitchell looking particularly cute and getting better with his sitting. He was surprisingly happy on Santa's lap!
We also went to a birthday party at "Pump it Up" a local bounce house. Luke LOVED all the jumping and was fearless about trying out the rock climbing wall. He just cleared the 35 pound minimum. More fun planned for next holiday weekend!

In Search of Support

I had someone suggest to me that we get plugged into some sort of support group to help us along the path of Mitchell's journey. As we are closer all the time to full-acceptance of his situation, I took the suggestion to heart. So far support has come from Yahoo special interest boards for CP, CVI and SWAN - a group for non-diagnosed children. I'm what you call a "lurker" since I mostly read summaries of the posts rather than actively post myself.

Finding groups in the community is a little harder especially since we don't have a real diagnosis. But we've had some activity. Last month, we attended a playgroup at the Association for the Blind and Visually Impaired. While 10 families were expected, 3 showed up. Even in the intimate setting, it was nice be able to share playtime void of mom-petition (AKA mom competition). Both of the other children present had a diagnosis. A girl was born with part of her brain on the outside of her skull. The part was removed and she was not expected to live, let alone see, walk and talk. Would you believe she is doing all of those? Amazing.

We also went to a monthly playtime at a private physical therapy center for children with rare syndromes. Many of the kids have genetic issues, like Angelman's. There was a wide range of abilities and the parents were fantastic - you wouldn't believe how good it was to be among those for whom comparing neurologist experiences is considered interesting party conversation! Still, it was quite overwhelming. This is Mitchell's peer group. Not exactly what you wish for when you think of your child's future.

I know we put a whole lot on the fact that Mitchell is undiagnosed. It's our main frustration made even worse now that we've met more kids that are differently-abled. Kids missing parts of their brain, with 3 extra chromosomes and having chromosomes absent at Mitchell's age are sitting, interacting, walking and more. Why if we have so many normal test results, no seizures, isn't tube-fed, etc., is he getting further and further behind? It doesn't make sense. Doctors tell us that 30-40% of kids go undiagnosed but from the unscientific census we've done in in the special health needs community, we just don't see how that is true.

Anyway, that's my rant for today.

--Still in search of support in Cincinnati!