Tuesday, September 25, 2012

Hyperberic Oxygen Treatments

Hyperberic oxygen treatments (HBOT) are said to have huge benefits in children with cerebral palsy.  I have known this for a few years now, but we have felt as though we have been putting Lila through so much that it was something that needed to be put on hold.

HBOT definition in wikipeda:
Hyperbaric medicine, also known as hyperbaric oxygen therapy (HBOT), is the medical use of oxygen at a level higher than atmospheric pressure. The equipment required consists of a pressure chamber, which may be of rigid or flexible construction, and a means of delivering 100% oxygen. Operation is performed to a predetermined schedule by trained personnel who monitor the patient and may adjust the schedule as required. HBOT found early use in the treatment of decompression sickness. But it has also shown great effectiveness in treating conditions such as gas gangrene and carbon monoxide poisoning. More recent research has examined the possibility that it may also have value for other conditions such as cerebral palsy and multiple sclerosis, but no significant evidence has been found.

How does it work?  Well, there are a few different types of  HBOT chambers, one hard shell, one flexible construction, home chambers, and situations where you sit in a larger chamber with a helmet on (of which you are getting direct oxygen through this "astronaut" helmet).  We had tried the helmet route before, but Lila would have nothing to do with it.  Tried it once.

Locally we have two options, the hard chamber and the soft chamber.  The soft chamber is one that two of my friends from our CP support group have used, and seen great results.  Speech improved immediately, cognitive levels rose, and one child gained a better sense of her body in space (something all kids with CP could use).  We are now at a point where Lila is really gaining ground in her academics, and a little pure oxygen could really keep this moving along.

It is recommended that we do 10-12 treatments before making a decision to stop.  It takes a few treatments to give the brain the chance to begin healing.  Thankfully, Lila is on Fall break for the next three weeks which gives us the opportunity to try this alternative treatment and see if it will benefit her.  So, we are going to start next week, go three days a week for three weeks, and then assess the benefits for Lila.

I am part of a parent to parent network and this was written by a Mom with great experience in HBOT.

We have taken our son and it has been the best thing we've ever done for him!  We did 40 dives in 2010 and 40 dives last summer.  Since the second set of 40 we have been going for 6 to 10 dives every 4 to 8 weeks.  If seizures reappear we head back sooner and the are quickly eliminated.  He is drug free so this is the only treatment we are currently using for seizure control.  We found that we were able to stretch him out better at 1.75 ATA than we were at 1.50.  Based on that, I'm skeptical of the mild HBOT chambers that treat at a lower ATA and do not ensure pure oxygen.
The first changes we noticed were in his vision within the first 2 dives.  His stomach issues have dramatically improved as well and he can now eat gluten products with no issues.  The most concrete evidence we have, that cannot be dismissed as a wishful Mom, is that in the 8 months before his first session of 40 we were in the hospital every other month and in those month our insurance company paid out over $44,000 in hospital visits.  In the 18 months following not one hospital visit and he still has not be admitted into the hospital since that first session in 2010.  He looks so healthy and attentive.  All of is therapists and even school staff have noticed the difference.
Even if you have to do fundraisers or grants it is well worth it.  After we saw this video of Kurt Allen, we knew we had to try.  Keep in mind when looking at Kurt's video that he had a knowledge base to work from since he had no disabilities before a car wreck.  Ryan's progress hasn't been that quick because he didn't have the previous knowledge base to work from; however, his progress has been life changing for our family.  You can see Ryan's progress at http://www.specialfaithforspecialneeds.com/ 

I have a few other parent testimonials that will blow your mind!!  More to be shared later :-)

Monday, September 24, 2012

Lila is on Fall break!

Seems like it's been a long time since Lila began school on July 23rd.  Thankfully, we have hit Fall break time, as we all need a little change for a few weeks.  I know that this is called BREAK, however, Lila always loses a ton of information on her breaks so we are going to be busy.  The first week, beginning today, Lila will attend a week of intensive physical therapy here in town with her weekly physical therapist.  4 1/2 hours a day, Monday through Thursday.  Friday will provide a nice break, and then a fun weekend in San Francisco with Uncle Ron.

Lila and Jaden
This past weekend, to kick off break, we attended the buddy walk to support our friend Jaden!  What a fun morning, including the tumble-bus and bounce house :-)  The girls had a blast, and took really long naps that afternoon!  We always enjoy this event, and are glad to help out our friends in any way possible :-)

Lila is also going to begin hyperbaric oxygen treatments today.  Monday, Wednesday, and Friday for the next three weeks.  My next few blog posts will get more in depth with what hyperbarics can do for kids with CP.

Lila being silly after church yesterday!
The following two weeks Lila will go to Goddard school from 9-12 every morning in order to keep her academics on track.  May not seem like much of a break, but will be a nice change for Lila (and I) :-)  She needs to maintain a schedule or else she just turns into a mess, so these three weeks will be very nice.  She will be able to interact with a different group of kids, and have fun with one of her favorite teachers around!  Thank you very much to Denise for affording Lila this opportunity to come to her school in October...we are thankful for people like Denise in our lives!

Friday, September 21, 2012

Great news!

As most of you know, I have been making purses for the past 1 1/2 years in order to raise money for Lila's treatments and therapies not covered by insurance.  This has been a nice avenue of revenue for her fund raising account, however is very difficult to take it to the next level when it is just one person making the purses (me, that is).  I had become very stressed trying to build an inventory and get the word out there.  So, about two or three months ago I began working with this amazing woman from church, who has sewn for 60 years now.  She is very talented, and was willing to help me make some purses and take the load off.  Very very helpful, but I had to pay her a bit for her time.

Over the past year I have tossed around the idea of beginning an Etsy (all handmade items from artists around the world) site is in order take this one step further and hopefully raise enough money for Lila to have another stem cell treatment and multiple therapies over the upcoming years.  However, this could not be done without an inventory substantial enough to support a site like Etsy...so went on hold for a while.

A dear friend of ours has recently connected me with this amazing entrepreneur in the Reno are who owns a company called Creative Coverings.  Creative Coverings is a company that makes tablecloths for events and  high end weddings.  They have a cut and sew in house, and are looking for a way to give back to the community.  LILA, I say!  They have chosen Lila to be their "charity" and are going to make purses for us using their scraps (which are awesome), at no cost to us!  HOLY COW!  We can finally gain an inventory and make this happen!  So exciting!  This will all happen over the next few weeks, and I will post samples as soon as possible.

Hope you all are excited as I am!

Wednesday, September 12, 2012

Full day kindergarten

WOW!  Lila is doing soooo well!!!!  She is interacting with all of the kids, raises her hands to answer questions, and is progressing in her writing, letter recognition and letter sounds.  We are absolutely amazed at her progress and capabilities, as is her teacher.  I had a teachers conference this past Monday and she is recognizing 21 out of 48 letters, has 50% of her letter sounds down, and is recognizing 6 different site words!  I have been frustrated for three years over her lack of progress, and now she is finally ready!

Lila loves to pretend to be the teacher at home, read books to the class, ask math questions, and wakes up on Saturday mornings asking to go to school.  SO exciting to see her finally becoming interested in academics!  We are not even putting pressure on her to focus and grasp concepts, like we have tried to do in the past...Lila has come around...yay!

In the past, Lila would recognize a skill as difficult, and create a diversion immediately.  Most recently I was wanting to do a homework page with her, and she said that she wanted to do some cutting instead..."because it was easier"- her own words!  This is the Lila I have known for the past four years in school.  Hallelujah, there is a GOD!  She is excited about her letter sounds, feels proud of herself when she points out letters when we are reading a book, and traces the alphabet and her name in a matter of minutes.  Boy oh boy, we are having a great year, and just started school on July 23rd!  It can only get better :-)

There was an opportunity that was presented to us whereas Lila would be able to attend a private school, very near our house, for kindergarten only, as first graders go into the school district.  We made the appropriate calls, looked into services for Lila, etc. however this did not work out.  Nevertheless, what it did do was opened our eyes to Lila's current schedule at school.  For this, I am forever grateful!  Today I had a meeting with all of Lila's therapists, the principal, her one-on-one aide, and her resource teacher.  I put this meeting together in an effort to see how we can all work together to keep Lila in the classroom as much as possible each week.  We feel very strongly about her academics being critical this year, as we have decided to keep her back in full day, typical KG and give her the chance to catch up.  It is working, and I don't want to see her stumble because we are putting too much emphasis on therapies rather than academics.

That being said, the meeting was a huge success, and we feel as though Lila is so well supported!  We are very fortunate to be where we are in the school district, and all of this would not have become so clear to me if we would not have been presented with this private school offer.

Everything happens for a reason...I whole-heartedly believe this.  I originally thought that this offer for Lila to be in a smaller program, be closer to home, and go to the same school as her sister was the perfect scenario.  Well, since this has fallen through, something so great has come out of it.  So, the original outcome I had foreseen was not the real reason that this offer was presented to us.  Funny how things work sometimes :-)  If we are lucky, Lila will be able to attend the private school while she is on her breaks, in order for her to stay on track and keep her momentum going.  This would truly be the best of both worlds :-)

Thank you God for putting people, offers, and hurdles in our tracks...just to get to an amazing outcome, no matter which way this all would have worked out!

Friday, September 7, 2012

Lots of good news....

Oh wow, I shouldn't have waited so long to write, so expect a bunch of blog posts over the next few weeks :-)

Matt and Nora on the left, Mom and Nora on the right
Where do I start....Ok, I will start with last weekend....Labor Day weekend we headed to San Francisco to see Matt's Uncle Ron.  Packed up the girls first thing Saturday morning and started our 4 hour drive.  This seems to be our max distance, as Nora gets carsick after a couple of hours.  I always forget about this until we start driving, so am never prepared.  Poor kid, she just wanted to get there and "rest on Uncle Ron's shoulder" :-)

The girls making the sea lion noises!
We had a fun weekend, but the girls weren't able to get out much.  Matt and I helped Uncle Ron hang all of Barbara's 'old world maps' in his new apartment, which was fun for me and frustrating for Matt (typical when we do house projects together...hahaha.  He usually tells me to just draw it up for him, and he will build it without further discussion. :-)  Anyway, this project took some prep time on Saturday, hanging half of them before dinner, and then laying out, measuring and hanging the rest before we headed out on Sunday afternoon.  Nevertheless, Sunday morning the girls were able to get to the merry-go-round, see the sea lions, and watch a magic show at Fisherman's Wharf.  Lucky for us, Uncle Ron lives 2 blocks from the Wharf, so it is a ton of fun for the girls to go to the city with us.

It was a bit chilly, as summers are in San Francisco, so Nora wore pants for the first time since May (she is a bit obsessed with dresses right now).  Lila is not picky, but is definitely expressing her opinion more often when it comes to what she wears.  Very cool, as we like it when she expresses her opinion about MOST things :-)

Nora on the merry-go-round
Uncle Ron recognized a big difference in Lila since we last saw him...6 - 8 weeks ago!  We have seen a change in her speech clarity, her thoroughness in getting her entire thought out (be it a bit slow), and expressing herself in her stories she tells...all of these skills have really been coming along since we started school in July.  She was sooooo tired, and he still saw a big change!  I love to hear these observations from others, because it is hard to see on a day to day basis.  Lila just keeps making huge strides each week, and we are so proud of her!

Enamored by the sea lions
Lastly, as we expected the girls didn't sleep well at all, which is why we usually only spend 1 1/2 days visiting Uncle Ron.  We have most recently stayed in Barbara's apartment which is soooo quiet, and they both have separate sleeping areas.  Unfortunately, the girls are just not comfortable sleeping elsewhere, and don't sleep in the car on the way home either!  After waking up at 5 a.m. on Sunday, Nora napped for an hour after lunch, and Lila not at all.  We left for SF around 4:30 in the afternoon and arrived home at 8:15....no sleep at all!  WHat!  Is this normal?  I never will understand it!  They were both absolutely exhausted, and still managed to sing every song under the sun on the way home, and entertain each other.  Thankfully, once they hit their pillows, they were out!

View of Coit Tower from Uncle Ron's apartment!
Fun weekend, and so great to see the girls bonding more and more with Uncle Ron!  They love him (oh, Nora asks for him weekly and always wonders what he is doing:-), and we are so thankful to have him in our lives!!!!