It really is the little things...oh wait those are actually big things

My day was made yesterday by 2 of the most ordinary things.
I went shopping with Christian and bought him "cool", casual shoes at Children's Place and stylish sunglasses. No big deal huh? Wrong..big deal , very big deal. First of all most shoes don't fit over his braces that he wears on his feet. Therefore we have one pair of tennis shoes we wear with everything. I have been wanting some more dressy stylish shoes for his nicer clothes/church/school. Today I hit the jackpot. I was sooooo excited when they fit over his braces...it really made me giddy. Then score number 2 were the sunglasses. He looked like a 6 yr old having fun, wearing his sunglasses on a bright day. The best part was that he didn't try to take them off. I actually wanted to just stroll around some more outside just to get to watch him with his sunglasses on. He actually wore them. It was one of those days where all the stars aligned:)

As much as major things like-taking more steps and learning a new sign-are monumental and obviously exciting....the small things that make me feel like a mom of a typical 6 yr old boy are even grander on certain days. Most of the moms I am friends with experience this same thing. We long for our kids to meet therapy goals that lead them to more independence but we also long for and celebrate the "normalcy" of cool shoes that fit, swimming independently with other kids in the pool,  clapping at a performance (when it's actually appropriate time to clap:) dancing in the car to Carly Rae jepsen, watching cartoons on TV, rolling a ball to and laughing with your twin brother,riding rides at SDC....(these are all from real mom's lives).

it's the small things...that are really big things

day 17..improvements..trying to get the video up

This is our last weekend up here. We are here a total of 3 weeks...that's 33 dives. I wish we could do 40-50 but that's more money and more time away. The rest of the family came up for 4 days. It was so good to all be together. Although sleeping 5 in a hotel room is a little tricky when the 1 yr old still wakes up crying at least once a night. We made it though. We also snuck in a little fun time too!

I am posting a video of Christian walking. I will explain the differences in what I've seen since we have been here. Of course these are most obvious to me because I'm the only one who helps him with his walking. I will explain the best that I can.

Before coming:
1. His legs would scissor (meaning cross over each other) with every other step. So I would need to move it back over in correct alignment so he could take his next step.

2. When he would take a step I would usually need to help him complete the step...meaning get the foot he just stepped with all the way thru. Sometimes he would take a "complete" step on his own but usually it was 2 out of 10 steps.

3. I hold his right hand so that he doesn't continue to focus on grabbing his shirt or putting his hand in his mouth. This leads to not focusing on walking. He tends to fight me a lot on holding his right hand.

 

Now :

1. He can take5-6 steps without crossing over. When he does crossover it's not as far over. This is awesome because I don't have to move his leg every step. You will see him crossover a couple of times in video.

 

2. He is initiating and following thru on about 80 percent of steps. I rarely have to help it on thru. Usually just the right leg. You will see me do this a couple of times in the video. I use my foot to help his on thru.

 

3. He doesn't fight me as much with holding his right hand. You will notice that sometimes I can just support his chest and not hold hands. I typically swich around my support while we are walking. He bears all of the weight on his own. I'm not holding him up. It's hard for others to tell in the video. Also it looks like he's leaning forward but he's not.

 

He is also walking further..we walk in and out of the chamber..to the outside door. It is about 50 ft. Oh and I had mentioned in an earlier post that his left arm is not as stiff or drawn up. This is usually worse when he walks because he's working so hard. It has gotten better! You can see in the video that it bent but not drawn up to his chest.

 

 

 

 

day 9 hbot and common misconceptions

I'm continuing to see so much improvement with Christian's walking. I will try to get video up in a couple of days. Right now I am just walking with him...holding his hands or trunk. He is supporting his weight, taking steps on his own and with my assistance. Right now our situation with our walker is not a happy one. By that I mean that the one he has been using is just not working at all. He "hangs" on it too much with his arms. He actually does better without his walker. However we are in the process of waiting for our new walker. It's much different than the one we have had for the past 4 years.

Most frequently asked questions...answered..
-the chamber does not move.
-we do not get wet
-I am not breathing 100 percent oxygen. Only the people wearing the hoods.

Other interesting facts:
You cannot wear any jewelry in  chamber or lotions, make up, hair products.
You have to wear 100 percent cotton clothing.
Nothing in pockets..car keys, money, so on.


 This is more explanation of what hyperbarics is and what is used for.

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Hyperbaric Oxygen Therapy (HBOT) places patients in an oxygen-rich, pressurized chamber. Breathing pure oxygen under pressure dramatically increases the oxygen in the blood plasma, as well as in the brain, spine, and joint fluid.Generally, the red blood cells already have 95 percent or higher oxygen saturation. There usually is little increase in the oxygen that red blood cells can carry under normal conditions. The pressure chamber forces an oxygen-rich situation, in much the same way carbon dioxide is forced into a bottle of soda.Increasing the oxygen-carrying capacity of the blood has been clearly demonstrated in Europe, Russia and China to improve healing for a wide range of acute and chronic illnesses.In the U.S., there are 13 FDA-approved uses for HBOT: Air Embolism Carbon Monoxide Poisoning Complications of Radiation Therapy Crush Injuries Decompression Sickness Enhancement of healing in selected problem wounds Exceptional Blood Loss Anemia Gas Gangrene Intra-Cranial Abscess Necrotizing (popularly known as "flesh-eating") Infections Osteomyelitis (bacterial infection of bone or bone marrow) Skin Grafts and Flaps Thermal Burns Hyperbaric oxygen treatments have successfully been used throughout the world for many other conditions, which in the U.S. are referred to as “off-label” uses.Here is a partial list of HBOT uses: Atherosclerosis Autism Brain swelling and injury Brown recluse spider bites Cerebral palsy Cosmetic surgery, to improve healing Edema Hearing loss Inflammation Lung diseases, including inflammation, fibrosis and influenza Lyme Disease Macular degeneration and other vision problems Multiple Chemical Sensitivity Multiple Sclerosis Near drowning Neuropathy Periodontal disease Serious heart disease, and pain and dysfunction related to heart attack Sinusitis Sports injury Stasis ulcers (bedsores) Stroke Trauma Ulcers Vascular disorders, including congestion It is thought that HBOT use would be called for with any condition where the body's ability to function and heal would be improved by extra oxygen. Russia and China are the world's leaders in manufacturing hyperbaric chambers and utilization of HBOT therapy. This may be, in part, due to their socialized medical systems. In some countries, the government pays for HBOT treatments for autism, cerebral palsy, and brain injuries including traumatic brain injury. Great Britain’s partially socialized healthcare system treats multiple sclerosis with HBOT therapy. In the U.S., no hospital will treat a multiple sclerosis patient in their hyperbaric chamber, no matter how ill the person is. While it will not cure MS, it will safely and consistently help manage symptoms.With other diseases, such as non-healing wounds and even necrotizing fasciitis, HBOT can actually cure. U.S. physicians are unlikely to know more than two of the approved uses of HBOT, even though it may be the best treatment option for many other conditions.

Day 7 of hbot and the things you wouldn't know

We made our 12th dive today.  So far I've noticed that Christian's walking has improved. He is not "scissoring" his legs as much and follow thru on his steps and walking farther. Walking is such a big goal for him and us (the people who carry him to and from:). He will only get taller and heavier. Carrying him will only get harder for me and that is why we work so hard on walking.

This is the part of the blog where I let you in to the world of parent a child with mental and physical disabilities. Of course you see Christian and know that he doesn't talk or walk on his own and that's an obvious issue we deal with. But there are other "minor" things that come along with a child with brain damage that you wouldn't think about. For instance...on our drive to k.c I look back and Christian's ear is bleeding...there is blood on the side of his face now and smeared on his car seat...whaaaaaaaaat! So I watch him and he is banging/rubbing his head on his car seat..repeatedly. Well really what can I do about it. I can't stop and hold his head or make him stop hitting it on his car seat. I stop and give him something to chew on hoping this will fill the need to bang his head on the seat. This doesn't help he keeps doing it. The scrape clots a couple of times but he reopens it from more banging. At this point I pull over in hopes that if I get him out to stand he may stop this behavior. I had the feeling he was getting frustrated from the long ride. Well we get out and I  have left one of his shoes at home...hmmm. We go ahead and attempt standing. This does help the situation for the rest of the ride.

So I'm left with needing to go to walmart to get shoes because we only have 1 and cleaning blood off of the car seat and his face. For whatever reason he was frustrated or wanted to move and chose that behavior. While non of this is life threatening it just adds to the mountain of small things that come with our child's diagnosis...things no one even realizes. And again you try to shrug it off and chalk it up to life:)

Day 3-4 ..explanation of cerebral palsy and hyperbaric oxygen therapy

So what is hyperbaric oxygen therapy you ask? I will copy and pasted an explanation for Christian's diagnosis of cerebral palsy (since birth) and the role of hyperbarics.

Typical day:
8 am -first dive...you "dive" to 1.6 ata. This takes 15 mins. You have to pop your ears as you do this. (like when you fly in an airplane) If you have tubes you don't have to pop your ears. Most people drink or chew gum. When the "chamber" is at 1.6 ata then I put the hood on Christian. The tube connects to the hood and he is breathing 100 percent oxygen. We do this for 1 hour. I take his hood off when the hour is over. When that is over the we go back up to normal atmospheric pressure. This takes about 10 mins. You don't need to pop ears because they kind of do the reverse on their own. The we get out of chamber.The chamber does not actually move or anything.

From 9:45-12:45 we go back to hotel and work on walking,standing, sitting. He does his stander for an hour. We eat lunch and take a walk around the parking lot..to get fresh air.

At 1 we go back for our second dive.

Come back for a short nap then swim, eat supper, work on more standing and walking. If time he goes in his stander again. Last night I decided to take c for a walk for fresh air. Well I thought hey lets go while you are in your stander:)..... what a site we were. it's not something people are used to seeing. On top of that the stander is kinda awkward to push....it wants to spin. So of course we would spin as we go. O well I'm used to people staring...may as well do what makes us happy. Although I did run over my pinky toe!

By 8:30 we take baths and bedtime. He is usually pretty tired.

So that's what we do for 3 weeks. On Saturdays we only have a morning dive..no dive on Sunday.

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THE ROLE OF HBOT IN CEREBRAL PALSY

Cerebral Palsy (CP) is a descriptive neurological and physical problem originating from defects in motor cortices. Collectively these are labeled as cerebral palsy.
Cerebral Palsy is non-progressive, non-contagious, permanent neurological abnormality. The location and size of the lesion will determine what deficit the child will have. The abnormalities occur in utero, during or after birth up until age five. The affected individual is influenced by genetic and environmental factors as well. Cerebral Palsy is associated with a perinatal hypoxic event (tight nuchal or prolapsed cord), placental abnormalities , prolonged labor, or infection transmitted during delivery.
There is no known cure for cerebral palsy, and there is no standard therapy. Early treatment gives a child a better chance to overcome disabilities.

Two alternative therapies considered by some to be controversial include neuromuscular electrical stimulation and hyperbaric oxygen therapy (HBOT). HBOT might be beneficial in treating Cerebral Palsy cases that are due to traumatic brain injury caused by decreased oxygen.

The theoretical basis for HBOT in CP is that there are areas in the brain next to the CP lesions that are hypoxic due to marginal tissue perfusion. HBOT can increase the available oxygen to these marginal tissues and reactivate the cells to become functional. The number of cells that can be “salvaged” by HBOT cannot be determined. HBOT might cause improvement in motor skills, attention span, visual and verbal commands.
For this treatment, HBOT is used at “low pressure” (1.5 to 1.7 atmospheres absolute), as this has been demonstrated to be optimal pressure that an injured brain can tolerate without toxicity.

Hbot day 2

Today will be our first full day which means 2 "dives". We go at 8 am and 1pm.
This morning we had quite the range of people in the chamber .I enjoy hearing people's stories and their improvements. But today was a little bit sad. One boy who is 6 , like Christian, and has brain damage(like c does) but unlike Christian he was born healthy. He's damage was due to abuse at the age of 3. His grandma took custody of him and works tirelessly to get him help. He was not supposed to live but is obviously thriving. Such a sad situation but also beauty from the love of his grandma.
Another guy was 82 and just a gentle spirit. He kept saying Hi and waving at C. He is also friends with john q hammons! whaaaat? this guy is a builder...apparently builds major structures.
The other lady is about 36 and had 2 strokes 5 years ago. This is her first time to do hyperbarics and intense therapy. She is from St. Louis and has 2 kids. It's very hard for her to be away from them. Her mom is here helping her. She's so determined to walk without her cane..i think she will get there.

The common thing is family stepping in to help whenever it is needed and at whatever cost. 

Hyperbarics Day 1

We are back to Kansas City to try Hyperbaric Oxygen Therapy with Christian again. We did this back in 2009-10. If you go back to those years on the blog you can look at what we did and pics and video.
What led us to do this? We are trying to get Christian off of the ketogenic diet. Although he has had great success on seizure reduction we have also had not so pleasant side effects. Christian has kidney stones due to the diet. We knew this was a possibility but hoped it wouldn't happen. Also the diet is just not natural and lacks vitamins (he takes vitamins to make up for this) and minerals. Also it's just at times annoying to have to make meals and take them, he can't eat with kids at school or bday parties. There are just a lot of little things that come in to play with being on the diet. He has been on it 3 yrs now. We are grateful for the time it has given Christian to not have seizures everyday.

We tried to wean down off the diet and that has not been successful. He has started to have more seizures after going down 2 steps of ratios on the diet. So we see that this is not a possibility without having more seizures. That leads me to why we are here doing hyperbarics. We are hoping that it will reduce his seizures like it did when he was 2yrs old.

The link below will also explain what Hyperbaric oxygen therapy is. Just click on the sentence.

This is the place we are doing HBOT


THANK YOU:
Thank you to all of you who participated in the Dodging to make a Difference -Dodgeball Tourn.
The money raised is helping Christian get the therapy he needs. Hyperbaric Oxygen therapy is not  covered by insurance. We are hopeful that we will see some good things start to happen for  Christian because of this therapy. At the end of the day, we want to say that we tried to help him have the best life possible.