Dive 38: A Major Breakthrough to report!!!

Here is Naomi putting sugar into her hot chocolate with her RIGHT (affected hand) and using suppination to do it!!

That's almost 90 degrees of suppination. To be fair, she was engaging other muscles to help as well (bad posture at shoulder), BUT she has never done this action before, nor on her own, nor with so little other muscle involvement!! WOWEE, ZOWEE!!! Independent finger movement---here we come!!!

This morning Naomi had an extra long HBOT session (2 hours) at depth. I think all of our successive HBOT treatments are having a positive affect. I wish we had been able to do more therapy. Naomi does small amounts of therapy every dive, and we do small amounts of therapy inbetween dives. For instance, we played Trouble (hard to do) with Righty twice, and she did a round of Sun Salutation exercises. However, at age 10, there are limits that she imposes as to how much she will do.

I am totally stoked. Because Andrew was nice enough to let us do an extra dive on SUnday, we will actually (weather permitting) be able to leave slightly early tomorrow, Hurray!!!

We are all eager to complete our last two dives!!!

Update on Skinny

Skinny-the-wolf-dog ran away from the HOC this morning. He broke out through and open window. My guess is that he went for the hospital to find Bob. The hospital is several miles away. I want to go look for him, but we already got majorly stuck in snow this morning, and I am afraid to get stuck again.

We miss you Skinny, please come back!

A BIG Thank you To Humphrey and Andrew at the HOC:

Humphrey, Naomi and Andrew at the HOC

Christmas Chocolate and Dive 37 is completed!

Naomi pictured with her non-dairy chocolate roses!

Many thanks to our friend Kathleen for showing us how to make chocolates!

Here are Benj and Naomi pouring chocolates into molds. As you can see from this picture, chocolate is melted on low temperature in glass jars using an electric fry pan. Then the chocolates are spooned into molds. From there the molds are dropped a bit to shake the air bubbles out, then put into the freezer until they are hard enough to pop out of the molds. We painted white chocolates on to some of the molds to give a little more color.

Here are some finished chocolates!

Dive 37 Completed!!!

Today we completed our 37th dive. With all the weather we have been having (I had to dig the car out of the snow twice today), it was touch-and-go as to whether (weather) we would make it there !

Naomi hasn't had any amazing changes, but there seem to be little changes happening. It seems like she has more rotation in suppination and slightly better use of her pincer grasp. Her limp seems less pronounced, which is good considering how cold and how little actual exercise we are getting these days because of the weather.

Several of the HBOT studies I have read indicate the need for intensive therapy for the two months following the 40 dive regimine. We will most likely do constraint therapy at home as well as electro-stimulation. I know we will get push-back from Naomi, but I want to make sure that this treatment round is effective and we will get permanent carry over.


The Skinny on Skinny

Please send healing wishes to Bob (owner of Skinny the Wolf Dog). He is currently in the hospital in a coma, and we would like to see him reunited with his dog. Skinny seems very sad.

From Naomi:

And Bob is a very nice guy and he raised a lot of monny for the HOC to
open it! I am really happy that I will be home soon.

Merry Christmas!!

Day 18: A Grief Observed...

Here is Larry, Naomi's grandfather.

Yesterday, Naomi's grandfather passed away.

We are all sad, but glad that he has gone to a better place.

In honor of Larry (Alex's Dad), I am including a paragraph that Benjamin wrote about his grandfather in a recent essay:

Honoring veterans could range from saying, “thank you” to volunteering time at a veterans hospital. One way I have honored a veteran is by asking my grandfather about his experiences in the Vietnam War. He enjoys telling me stories of the heroism and tragedy during his three tours of duty. My favorite story is of how he earned his Bronze Star. While under heavy enemy artillery fire, he could have retreated with his unit. Instead, he stood his ground and radioed in the coordinates of the enemy positions enabling the US artillery to eliminate the enemy artillery batteries.

Here is his Obituary in the Oregonian:

Laurence Charles Baxter
Friday, December 19, 2008
The Oregonian

A service will be at 2 p.m. Tuesday, Dec. 23, 2008, in Willamette National Cemetery for Laurence Charles Baxter, who died Dec. 17 of kidney disease at age 68.

Laurence Charles Baxter was born Oct. 20, 1940, in Torrington, Wyo., and raised in Kalispell and Columbia Falls, Mont. He served three tours of duty in the Army in the Vietnam War and received a Bronze Star for Valor. He moved in 1974 to Portland, where he worked for Multnomah County for 29 years, most recently as a project manager. In 1982, he married Sheryl Funkhouser.

Survivors include his wife; sons, Alexander V. Baxter and Charles R. Baxter; stepdaughter, Juliette C. Soihl; and two grandchildren.

So long, Larry. It was a good ride. Say hi to Frosty, dog of legend, Mae, Grandma Gail and Burrell from us all.

Gingerbread, Snow and Mom's HBOT Breakthrough

Sunday was Gingerbread House making in the common room where we are staying! Naomi had a blast decorating a homemade gingerbread house with a room full of other people. How fun!

Saturday night it started snowing and it snowed just under a foot in Victoria, then the temperature dropped down to -7 C (or about 20 F for you in the US).

Here I have managed to capture probably the worst view of the snow, but we were all too cold to go out and take another. Really there is about a foot of snow! And it's VERY, VERY icy.

Saturday night we were at Kathleen's singing concert, and left 1/2 way through because we thought it would be better driving right away in the snow rather than later. We nearly got in three wrecks as underneath the snow, the road was very icy. But we made it home. We almost hit a DEER on a very urban street (munching on shrubs in peoples front yards) as it walked across the street. We think that it might live in the Garry Oak Forest at Government House.

Garry Oaks are protected here, and once had a vast range on Vancouver Island. Several species of animals, birds and insects are dependant on the Garry Oak for habitat.

Mom's Big HBOT Breakthrough:

For the last year, I have had chronic tendontis in might right foot. No day goes by without a little pain. Some days are better than others, but I can always tell its there. Well, for the last 3 days, I have been PAIN-FREE. Thank you HBOT

Although we are here primarily for Naomi, I am happy to get a benefit from spending hours of my life watching movies in a pressurized box!

Naomi's ankle scar continues to get lighter and lighter. It may disappear all together by the time we leave. Her face eczema is still gone, although we haven't gotten any structural break-throughs just yet. Maybe some healing takes more time.

Benjamin successfully made it across the boarder via the Clipper by himself today. We missed him--it has been far too quiet without the constant bickering of siblings who love each other.


Have a great day!

Day 13: Saturday Snow

Here is a picture of Naomi looking out of the HBOT tank. She is stretching her right hand flat against the port hole as part of her tank exercises. We are watching Whale Rider! What a good movie!

Naomi might be growing as her right leg seems to have stiffened up a bit these last two days (or its just because its SO DARN COLD!!) It's 2 degrees C (or about 38 F for you all in the US)here today. We had a light bit of snowfall around 4:00 PM.

We have an adopted dog during our stay...Ruby. Her owner asked us to walk her everyday (if we had time), and we have watched her at nights as well. She is a very good dog, but very timid. We enjoy having a canine friend to walk with since we miss Suki so much.

Here is a picture of Naomi and Ruby during our daily constitutional:



Thursday Alex and Benj took the Victoria Clipper home. What a great experience! If you don't need a car in Victoria, I highly recommend the Clipper as it is not that expensive and VERY fast. It took 2-1/2 hours to get from here to downtown Seattle. If you take your car up to a ferry it can take about 5 hours to get here.

Here are Benj and Alex before the Clipper left in the Inner Harbor.

No more major changes to report at this time. We have done 23 dives as of today and have 10 more days to go!

Oh, for people who subscribe to the blog, I updated the post from Sunday with a picture of Naomi's ankle and such, but you have to go the blog live to see the updates apparently.

For people thinking about coming to do HBOT here in Victoria, the HOC is a very relaxed and relaxing place. We appreciate the energy of the people who run it. They have a lot of ammenities for people to use, like the best water filter I have ever seen, infrared sauna's, and more. Today might have been a good day to do the sauna.

More on living in Canada:

Food here is very expensive compared to the States. And I have heard that Seattle in particular is expensive in comparison to say Texas. 1Liter of organic milk cost 3.59, which makes it approximately 12.00/gallon. Regular food prices are as much as WHole Foods organic in the States, only for regular food. An organic box of Macaroni and Cheese is $2.99/box!

Pizza Hut is apparently $28 for a large pizza!

The only things we have found that is reasonably priced are Hum Bao in the International District (.90/bao). Of course its probably laced with melamine.

Thankfully, we brought a LOT of food with us, and have a kitchen to cook in every day. That is saving us.

Gas is also very expensive here, although the price has been dropping. What is it in the States? It's .83/litre, or about 3.20/gallon.

Have a great day everyone and stay WARM!!!

1/2 There, and Small Changes!

At the conclusion of today's HBOT sessions we will be 1/2 way done! Hurray! Only 20 more movies to go...

We are seeing small changes in Naomi.

For one thing, the chronic eczema spot she has had on her mouth for 6 months cleared up yesterday! Hurray! That spot I have watched every day, and even on Sunday we have pictures (not good enough to post) of her eczema spot.

This time we got smart and took pictures of her arms that have really bad eczema/psoriasis on them. They are some better, but it would be nice to report that they are clear by the end of next week!

Cognitively, we haven't seen any changes yet.

In her hand, we have seem small improvements. She can open her right hand flat more easily. She can raise her right toes higher (bending at the ankle) while leaving her heal on the ground. Her grip, while still tenuous, seems a bit stronger.

Alex and Benj leave today for home today! We will miss them while they are gone. We wish Alex the best possible outcome for finding a new job!

Day 9 - Soft-sided HBOT vs. Hard Sided Tanks

First I am going to start with an amazing and inspiring video of someone who was in a car-crash, with a brain injury improving greatly from HBOT. Now, one thing this person has over Naomi, is that HBOT was administered within 3 months of brain injury rather than 10 years. Yet still this video gives us hope!



Nothing really new to report as for the HBOT treatments. It seems to disruptive to do much in the way of homework in the tank, as its a bit noisy, and I cannot get my daughter to unplug. Currently, we are watching the entire 6 CD Anne of Avonlea series. Naomi is doing stretches for her hand, shoulder and foot, but just minimally so.

Also, I am noting that she tends to be tired more of the time.

The price of gasoline in Canada is about double that of gasoline in the US. Food also seems amazingly higher priced as well. Perhaps one would change shopping habits?




Here is a picture of our friend Kathleen, at her booth, at Moss Street Market. She makes wonderfully inventive jewelry from chain-links and also precious metal clay.

More about Soft-sided HBOT tanks for home rental.

I have been doing more research on these tanks to find out if that option might have been more reasonable for Naomi. Here is what I found out: No. Those tanks are called mHBOT for "mild" HBOT. They are pressurize to maximum 1.3 atmospheres (Naomi is diving to 1.75 atm), and aren't built for 100% oxygen, but rather just above normal oxygen content. While they are purported to be great for kids with autism, it is NOT ideal for kiddos with Traumatic Brain Injuries. In these cases (as in Naomi's case), there is a specific benefit to having higher pressure and higher oxygen content.


And yet another picture of Naomi with Skinny-the-wolf-hybrid.

And that's all for today!

Day 7, A Small Success and an MS HBOT Story

From Naomi

when I came out this time my scar on my ancel was a lot Better!

From Mom:

After Naomi was born she went acidocis (meaning her blood went acidic). To save her life, the people in her ambulance, gave her a shot of sodium bicarbonate in her foot. Unfortunately, the blood vessel ruptured, and the sodium bicarbonate gave her a NASTY caustic burn from the inside out. It took months for it to heal, and supposedly burned her down to the bone. Ever since, she has been left with a large, dark, nasty raised scar on her right ankle. I was surprised at what Naomi wrote today, so I looked at her ankle. Sure enough, the scar was less predominant. It used to have darker skin around it, and it was raised. Now the scar isn't raised, and the skin is now much lighter in color. I wish that we had taken a picture of it earlier, but I didn't think to expect an improvement in that area.

I can attest to the fact that HBOT is good for burns and wounds. Naomi's thumb healed incredibly quickly after going in. On Thursday night, I burned myself cooking, and after I did HBOT the next morning, it was completely healed, where as it hurt going in.

I wish there was a way to measure changes to her brain currently.

We are at our 12th visit.

Today, our operator, Andrew, told us of one patient from this year. A lady with Multiple Sclerosis came into the clinic unable to walk on her own, and not strong enough to hold her own mask on in the tank. Andrew had to carry her into the tank and strap on her mask for her. Within 3 days, she could get in and out of the tank by herself, and after a week of 2x/day sessions, she could walk around the clinic.

That's pretty darn cool.

Here is a picture of Naomi in front of the HOC.

Saturday at the Moss Street Market, Day 6

Sunrise from Mossy Rock. This view is looking across the water to The Olympic Mountains.

Today, Saturday, we had just 1 HBOT session. Today's HBOT included the first disc of Anne of Green Gables. Naomi thought the part where Anne Shirley cracked Gilbert over the head with her slate exceedingly funny.

Hurray! The Moss Street Market, our favorite haunt while usually in Victoria, had a Christmas Market today! We were able to get many of our usual favorites. This great Market runs Spring - Fall. It's very non-commercial. Every vendor must sell wares that are homemade and organic (if food). Honey, yarn, veggies, jelly, jewelry, cheese, plants, etc.

Here is Naomi in her tye-died hat from Moss Street purchased last summer.

Nothing to report as far as Oxygen Therapy. We (Naomi and I) seem to be a bit more tired than usual. Naomi tends to be a bit more on edge if we try to do too much in a day, and prone to crying much more than usual.

We are reading Pride and Prejudice out loud tonight in front of the nice warm fireplace.

Take care, Friends!

HBOT Day 4: The Galloping Goose

Here is a view of Victoria from the Galloping Goose, the bike trail similar to the Burke-Gillman. We saw a harbor seal (not pictured) while stopped to take pictures.



Today's therapy was a little more productive. Naomi did her Spelling (AVKO Sequential Spelling) while doing her first dive. We were able to do yoga and a cross-crawl pattern in-between both dives today. A routine is emerging!



Today's movies, the last part of Pride and Prejudice and A Bee Movie.



Inbetween HBOT sessions today, we took a ride on the Galloping Goose. Despite the beautiful day, it was c-c-c-cold here today at a balmy 39 degrees F.



Today in Canada:

Big news in Canada today! Prime Minister, Stephen Harper, suspended the Parliment to prevent them from voting him no confidence (and kicking him out). There was a candle vigil that had signs implying that the (freezing) protesters wanted him thrown out.

Canadian Impressions:

More people rollerblade here, and rollerblade way better than what you would typically see on the Sammamish River Trail.

More people seem more environmentally conscious. There is a VERY large contingent of Smart Cars. The city made them their own parking spots in places where there wasn't enough room for regular cars, and with reduced parking fees.

Victoria is pretty flat, (well incomparison to where I come from), therefore there is a LARGE bicycle contigent. Not as many as in Portland, but the population is quite a bit less as well. We also see way more people walking everywhere.

On Canada and dogs. It seems like almost everybody has a dog, and walks their dog(s), and their dogs are way more balanced than the dogs in my neighborhood. The Dog Whisperer has his dogs walk next to him. All of the dogs here walk next to their owners. In the States, dogs walk in front of their owners and seem more out of control and out of balance. I wonder why? People really like walking their dogs here.

What I miss: (a rant about Jon Stewart and the Daily Show)

Okay, so we all type in www. before web addresses which stand for the WORLD WIDE WEB. I am outside of the US. I SHOULD be able to go to http://www.thedailyshow.com/ and watch Jon Stewart every night. I can't! The videos don't come up and I am redirected to a Canadian TV site, that is at least 2 weeks behind shows, and the site doesn't download the episodes in a way that is condusive to being able to actually watch without stopping every second or so to download more of the show. What is this travesty of justice?

Otherwise, Canada is pretty cool.

From Naomi: I had something happen my foot can lift in my Dafo
which didn't happen before. Canada is pretty cool. I like the animals here (especially Seals).

Skinny-the-wolf-hybrid came in to the HOC today. His owner Bob let us take his picture. We love Skinny!

Day 3: Here Come the Seals!

Inbetween HBOT sessions, we went to Oak Bay in search of wild seals to feed. We were rewarded with two seals and a passle of gulls that tried to take the fish from the seals and each other.



Did you know that it costs .95 cents to send a card from Canada to Seattle? WOW!



We had forgotten how expensive food is here, it being an island and all. A quart of Rice Milk at home is less than $2.00. Here a quart of rice milk is almost $4. Organic eggs are over $5.00/dozen.



Glutathione.



Today I read that glutathione was recommended for doing HBOT dives to aid in body healing. We are doing more research on this one. More to report later. Has anyone else read about glutathione as an aid in healing specifically with respect to children?



Water.



The HOC has this FAB water filter. You can choose slightly acidic or slightly alkaline water.



Peat Bath.



Alex had a Peat Bath today while waiting for Naomi and I to go through our morning HBOT. Alex enjoyed his bath very much and came out feeling relaxed and happy.



We did 3-1/2 hours worth of diving today while watching the perennial Naomi/mama favorite movie, Pride and Prejudice, the 5 hour BBC version.



Benjamin tried some Hum Bao in Chinatown for dinner tonight, and we are perfected new ways of doing stir fry.

Day 2 of HBOT

Here we are in the larger tank with our diving masks on, just prior to our morning dive.

For this mornings movie, Speed Racer! Well Speed Racer for the kids and relaxation for the mom. Naomi was able to do a few more exercises in the tank, but really just wants to watch her movies unimpeded by the pesky mama and her exercises.

After HBOT, we went to MEC (Mountain Equipment Company). It's like a Canadian version of REI, but more like old, old REI than the REI of today. We picked up some bike riding gloves for Naomi, and then took a short ride out to the beach. It was a lovely partially sunny day.

We met another traveller to the HBOT center today. He raved about the wonders of HBOT, and its healing capabilities. Skinny is his wolf-hybrid that is TOTALLY WAY Cool. Since we neglected to get a picture of Skinny-the-wolf, here is picture of our dog that we miss very much:

Our second dive was unremarkable. We went down a little deeper, so our ears hurt for a bit. Naomi watched "a girl and her horse" movie, Moondance Alexander.

I feel like doing the therapy is healing in the sense that our normally very, very hectic lives have slowed way down. I, the mom, personally am feeling very relaxed.

No healing to report yet though.

We had a vitamin b12 shot today to enhance the effects of hbot.

On an economic note, Canada is certainly not feeling the same effects of a recession that we are in the NW. While housing prices have dropped a bit, employment seems to be high, and although the Canadian government is doing a stimulus package at the behest of the American Government, its quite small in comparison to ours ($50b versus $7trillion).

Cheers, eh!

Day One of HBOT Therapy

Mom and Naomi in our 3-person bench seat dive tank just after the 2nd dive.

We successfully completed two dives today!

Dive 1 started out a bit rough. Naomi, remembering her fear from the coffin-like HBOT from a year ago, started crying. Benjamin saved the day! He said, "Turn on the video now and everything will be fine". So Naomi started watching The Boxcar Children and agreed to do it for 5 minutes. After 5 minutes, she was engaged enough in the movie to continue going for 1-1/2 hours. We went down to about 30 feet, and our ears popped a lot. The only uncomfortable parts were when the tank pressurized and de-pressurized. When we were "on the bottom" we watched the movie while breathing oxygen through a mask.

Naomi had a constant or "free-flow" oxygen mask. I had an "on demand" mask. I liked hers better, but there is only one of the constant oxygen masks per tank. Three people can easily be accomodated in these chambers which do resemble a bathosphere with a bench inside.

Naomi wasn't much interested in doing all of the therapy I had planned today, but was able to do about 30 seconds of moving her ankle up and down during the second dive. Movie #2 for today was Nim's Island. The HOC where we are diving has over 500 movies on demand for us to watch.

Benj and Alex went for an hour dive in the second tank during our first session today. Alex and Naomi both had slight headaches after they were done.

Pictured above is the 2-person tank Alex and Benj went into.

The "on demand" masks are heavy and you have to hold them to your face, making so your hands are not free. For the second dive, I got a mask with straps and went about figuring out how to make it work. It does work, but then you have this really heavy mask hanging off of your face.

Naomi's impression of Day 1:

If anyone wants to try it Note that your ears might hurt After.

and It was okay and I felt I was crunched and My legs hurt from sitting in one place too long. Tomorrow I will remember that I can stand up and move around in the tank.

When I looked at my hurt thumb before I went into the chamber, it looked bad. But when I got out after the first dive, it was all pink and looked better (mom note: 2 weeks ago Naomi fell while riding her bike and scraped ALL of the skin off of the top of her thumb. While it has been healing right along, it was definitely, surprisingly better after the first dive).

My highlight of today was going to eat lunch at the White Spot (mom note: White Spot is a Canadian Chain sort of like an upscale Denny's).

Back to mom:

More about our accomodations:

We are staying at Cardiff Place in Victoria. It's a former 17-unit urban cohousing condominium. Since it was formerly cohousing then there are lot's of common spaces for us to roam. We are in a reasonable-sized guest room with a full bathroom next door (and the common laundry facilities one door beyond the bathroom). On the same floor is the great common room, which has a livingroom area, diningroom and commercial kithchen. We have lots of space to do our homework and cook our meals (the common room was reserved for today which is why we ended up at the kids favorite--White Spot). Here is a picture of the very comfortable common room.

Coming to Canada

We had am amazingly easy trip over to Victoria yesterday. It took only 5 minutes to cross the border, and we drove onto the 2:00 PM ferry to Victoria with no wait. It was a new brand new German Coastal Class Ferry, called Coastal Celebrations (even nicer than the super ferry!).

We ate lunch aboard, saw two otters and an eagle while sailing through the beautiful Channel Islands and drove to our friend Kathleen's house.

After we unpacked, we had dessert with our friend. Here we all are just before we eat pie!

Everyone is excited for what Monday will bring.

Naomi's Back Story or What Happened to Naomi to Need HBOT.

Naomi was born 2 weeks after her due date. I had an emergency c-section because after almost a day of serious labor (we were doing a homebirth vbac), I felt something was terribly wrong. Thankfully, my midwife listened to me, and we went to the hospital for an emergency c-section. Naomi was born with her lungs stuck shut from mecomium (baby's first excrement) inhalation. It was the worst the doctor had ever seen. She was rushed to Children's Hospital in Seattle where she was put on ECMO (extra-corporeal membrane oxygenation).

ECMO is used in infants who are extremely ill due to breathing or heart problems. The ECMO machine circulates blood through an artificial lung back into the bloodstream. This provides adequate oxygen to the baby while allowing time for the lungs and heart to "rest" or heal.

Here is a picture of Naomi just after she was off of ECMO, she is still hooked up to a hard ventilator:

ECMO is a device of last resort for kids that are close to death. When Naomi was on ECMO 3 others were in NICU (neonatal intensive care unit) ECMO as well. Of those 4 kiddos, only Naomi came out alive. The down side to ECMO is that there is a large chance of have a stroke while on the machine, and most ECMO kids have asthma and allergies. Naomi had a stroke on Day 5 of ECMO. Thankfully the 5 days she had on the machine was enough to let her lungs absorb enough meconium to be able to breathe with a hard ventilator, eventually a soft-ventilator, and finally regular room air.

A regular down side to being a stroke victim (or traumatic brain injury of any kind) is an increased chance for seizures. To date, Naomi has only had one seizure, we think induced by a dark room coupled with a bright flashing anime cartoon. We are hoping that the repair of tissue in her brain from HBOT will lessen her future risk of seizures, as well as perhaps heal her asthma.

Here is Naomi the first day she got home from the hospital (at 2 months old):

Where are You Doing HBOT? Why Canada?

We are doing our care at HOC Hyperbaric Care Center in beautiful Victoria, B.C.

http://www.hyperbaric-care.com/hyperbaric_victoria.htm

Why Canada?

Well, we live in Western Washington and out of all of the array of options available, this option seems the most efficient and cost effective for our family. Also, we did not find out about Option 1, until we already had set the wheels in motion to do Canada. We may have chosen that first, but we also wanted to be under the care of someone who had experience, should Naomi experience side-effects.

What were your options?

1) Doing HBOT at home renting a machine.

Costs: $1495 to rent for a month

Plusses: What is more comfortable than at home? Makes an interesting conversation piece when stationed in the living room. Obviously the most economical choice.

Negatives: Soft-sided. Not sure if soft-sided is as efficacious.

http://www.hyperbaric4autism.com/

2) Doing HBOT at the ONE Naturopathic Clinic in the Seattle area that does HBOT.

Costs: $125/session, costs of 40 sessions ($125*40 =$5000), plus the cost of gas and the cost of time. A 1-1/2 hour session plus 2 hours of driving would seriously eat into our homeschooling time.

Plusses: Don't have to leave home for a month. The doctor seems VERY knowledgeable and nice. The atmosphere is nice too.

Negatives: From our house its a minimum of an hour each way through the worst traffic Seattle has to offer. There would be no way to do 2 treatments a day, and it would disrupt our life longer. Mom would be a basket case from driving through that traffic (mind you I am not afraid of traffic and drive to Seattle often--I once did therapy once/week for myself slightly closer to my house and quit because the traffic jambled my nerves so badly). Again, I am not a nervous person who is afraid to drive--this is a bad stretch.

Also, we have tried a type of hyperbaric chamber similar to this picture once before. I call it the "coffin" type. Naomi tried this last year. She refused to go in, unless I went in with her. As you can see from this picture, its not made for two people. Naomi and I were both very claustrophobic, and she flat out refused to go in again. Naomi is a fairly easy going child, so when she goes adamant, it usually means I should listen. (The coffin chamber we used wasn't clear all around, but looked more like a submarine with windows.

For people who live in S. Seattle, and wouldn't have far to travel, and may be adults without claustrophobic issues, I would recommend this avenue. Just Google "HBOT Seattle" and you will get to the actual website.

3) Go to Victoria, B.C. and use a hard-sided tank.

Costs: $85/treatment, exchange rate ~ .77CAD:$1US, 40 Treatment Cost: 40*85+.80 = $2720. Additional costs include traveling to and from Victoria with 4 people and a car via ferry: Round Trip = ~$170, plus gas. DH is coming up for only a short trip and then coming up to help us back, and Benj is going back for a weekend to attend a class. We need to add walk-on Clipper tickets $154 and gas from Seattle to Tswassen and Schwartz Bay to Victoria and back about 1-1/2 tanks of gas in the minivan so at today gas prices ($2.08/gallon) that is about $55. Total for Canada not including living expenses: $3100

Plusses: We get to stay with our friend, Kathleen, in a wonderful guest room in a wonderful part of Victoria. We can walk to almost every need we will have. Kathleen's house is a 10 minute drive from the clinic. Because we will be away from our house, we will have less encumbrances and be able to get more therapy, homeschooling and blogging accomplished while we are gone. It shouldn't be much more expensive than living at home, as we will have a kitchen to cook in. Victoria is a very nice place to be. It's a progressive city, and it will be fun to be in a different country for a while. Victoria is also in a rain shadow, so it should be less rainy there.

The tank is hard-sided and can accommodate up to 3 people sitting up, so it should be less claustrophobic for Naomi.

Negatives: We will miss DH, our animals and our friends!!

And that is my complete analysis! We are choosing the medium price option for this go around. If this round of HBOT is effective, we may try to do Option 1, the next time.

Do you have an HBOT story to share? Please comment away!

M&M

How Will You Know HBOT is Successful?

Here is a picture of Naomi's therapist, Sherryl, measuring Naomi's active and passive range of motion in her affected ankle.

The question, "How will I know HBOT therapy has been worth it?", will be a hard one to measure. We will take pre-treatment and post-treatment measurements and video's, but we aren't going to just do straight HBOT.

My Theory

I have a theory. My theory is that if I can stimulate different parts of the brain during or inbetween our two sessions a day, that we might have greater results than if we just did HBOT alone. As this session may be the only chance we might have in Naomi's life to try this therapy, as long as she improves, I don't care how much is HBOT and how much is repetition. I know from experience, about how much repetition can help and what skills we have attained thus far.

From another mother, whose son also did HBOT in Canada here is her list of improvements she saw and what we hope to see:

Basically, the obvious changes I noticed in the children who received HBOT were:

• Reduction in spasticity


• Increased ROM


• Increased ability in eye tracking


• Increased ability in sitting up straighter


• Increased memory


• Improved speech

I am not sure how to measure memory, but it is a certain problem that Naomi suffers. Does anyone out there have any suggestions about how to measure memory? Speech should be apparent, and is not something that we are currently woking on.

Our Plan:

We plan to do the following:

• Yoga (Sun Salutations)


• Ankle Range of Motion exercises


• Cross-crawl patterns


• Spanish


• Mental Math


• Spelling


• Shoulder Range of Motion


• Suppination range


• Music

All of these, with the exception of Yoga, we plan to do in the tank. Usually what happens, is you go into the tank and watch movies to distract the patient from the process. While we plan on doing the passive movie thing our first trip down, our goal will be to gradually introduce some therapy while in the tank.

What is Suppination?

For those friends who are not steeped in the lingo of therapy, suppination is the degree to which you can take your out-stretched arm (right palm facing left) and turn it palm up. Before we started doing Constraint Induced Movement Therapy (CIMT) (as championed by the nice people at U of Alabama), Naomi had 0% active and only slight passive range of motion in suppination. Through CIMT, she has gained 40% active range of motion. Most people can do greater than 90%. Passive range of motion is a therapist turning your arm for you. Active range of motion is what you can do yourself.

To Sum up "Successful"

I will know our mission is successful partially by external measurements (like those of suppination), by video, and by personal observation. I am sure scientifically personal observation isn't all that valid, but as her mom, teacher and sometimes erstwhile therapist, (as well as being the person absolutely most vested in seeing real improvements) I have a pretty darn good idea of her current capabilities and pitfalls.

Thank for sharing this exciting journey with us!

How About Some Research?

Currently, all of my impetus for doing HBOT comes from anecdotal evidence--ie praises made for the technology from other moms who also have children with Cerebral Palsy. While the medical community eshews anecdotal evidence, I have found through my career of improving Naomi's life, that motherhood desire to improve the life of ones child can be second to none. Also I look for people for which a particular therapy doesn't work. One alterative doctor said to me that almost no therapy works for more than 80% of the population--just hope you are in the 80%, not the 20%. To that end, I haven't found anyone who has spent the time, paid the money and been unhappy with the results of HBOT.

I also do a lot of research and read medical journals to see what scientifically has been proven in clinical trials as well. Here is a study of HBOT for diplegic CP kids who had reached a plateau in their gross motor skill function prior to HBOT. This study indicates that there was quite a bit of success. Naomi is (thankfully) hemi-plegic (one-sided involvement) rather than di-plegic (two sides of involvement), but one can extrapolate results.

http://archive.rubicon-foundation.org/dspace/bitstream/123456789/2324/1/10642070.pdf

Do you have a story? Can you say that HBOT therapy wasn't worth the money? Was it the best thing to happen to either you or your child? Tell your story here!

What is Hyperbaric Oxygen Therapy?

With Hyperbaric Oxygen Therapy (HBOT) one breathes 100% oxygen while sitting in a specially designed pressurized chamber. This therapy enhances the body’s own natural-healing process.

"Hyperbaric" is any pressure greater than the pressure at sea level (1.0 ATA). The greater the pressure, the greater the dose of oxygen delivered. In addition to pressurization, the percentage of oxygen is increased from room air (21% oxygen) to 100% oxygen.

The limiting factor of oxygenation at normal pressures (1.0 ATA) is our own blood and tissue physiology. At 1.0 ATA (atmospheres absolute), the red blood cells are able to carry only a limited amount of oxygen. At higher pressures, oxygen is more readily dissolved into all bodily fluids, including blood, plasma, lymphatic fluid, cerebrospinal fluid, and interstitial fluid.
This increase in oxygenation helps to reverse states of tissue oxygen depletion, known clinically as hypoxia, which is often a leading cause of cellular damage during disease states.

"Off Label" yet appropriate indications for HBOT include the following:

Stroke, Cerebral Edema, Lyme Disease, Autism, Migraine & Cluster headaches, Near Drowning, Brain Injury (cerebral edema/coma), Peripheral Neuropathy, Chronic Fatigue, Cerebral Palsy, Peripheral Vascular Disease, Immune System Building, Multiple Sclerosis, Sports Injuries, Spinal Cord Injury, Elective Plastic Surgery - recovery.

Hyperbaric Oxygenation is also an excellent therapy when used in combination with other Rehabilitation & Sports Medicine programs.

Medically "Approved" Conditions
Treatment chambers utilizing pressurized oxygen are currently in use in major hospitals for the following emergency conditions:

Air or gas embolism, Carbon monoxide poisoning or smoke inhalation, Gas gangrene/Gangrene, Crush injury and acute traumatic ischemias, Decompression sickness, Enhanced healing of selected problem wounds, Blood loss anemia, Necrotizing soft tissue infections, Refractory Osteomyelitis, Osteoradionecrosis, Compromised skin grafts, Thermal burns, Radiation tissue damage.