Wednesday, June 22, 2011

Good news and bad news

The good news first...
Lila has completed her pre-k program and had a blast with her friends on the last day of school!

Lila , Miss Stacy, and Miss Melina

We have been with her teachers for two years now, and will miss them terribly.  One of the last days of school was Field Days with games, bounce houses, and popsicles (could it get any better for a 5 year old  :-).  Lila had a blast, and shared lots of smiles with her friends.
Lila and Miss Stacy in the bounce house :-)

Lila will miss her speech therapist, Cayla, as well!

Lila and Mommy during Field Days

Lila showing her dance moves to a song at school

The developmental kindergarten that she will be headed to is not ideal, and once we figure out this stem cell treatment stuff, I may have to put my energies into finding her an alternative program, and some grants to pay for it.  We'll see how that all pans out, as I don't have the time or energy to focus on it right now.

Now for the bad news.....
It doesn't look like we will be getting the permit we need to get Nora's blood over the border for Lila's treatment.  We will know more within the next day or so, as there may be the possibility of working with another hospital.  Not sure how it will all pan out, however I keep trying to remind myself that everything happens for a reason and I know Lila will be better off for however this does turn out.

We will be sure to keep you all posted, and see if we can get some kind of resolution over the next day or so.

Sunday, June 19, 2011

Intensive physical therapy

It's official!  Lila, Nora, and I will be headed to LA in September to attend a 4-week intensive physical therapy program, using the therasuit, universal cage, and spider (all apparatus used to help kids become more mobile and stable).

This program is run by Polfit, and has many physical therapists whom all come from Poland.  The therasuit method of therapy comes from Poland, and is also used around Eastern Europe.  Here is a bit about what we are going to experience...   (this is a 15 minute video, so it is a bit time consuming, however will show you what Lila will be doing for three weeks).

We are very excited to allow her this opportunity...thanks to you all, and the support you have shown!  We are also excited to find out that insurance may cover a bit of the program.  Still in the works, not sure how much, but anything is better than nothing :-)
Lila, sitting up so strong on the stool

Lastly, it turns out that the stem cell treatment is costing more than anticipated, with all of the extras that come along with shipping the cord blood, blood work between the girls, testing on the cord blood itself, and the costs that add up at Cord Blood Registry to pay for their time in handling all of this.  With solid costs to date, we are looking at $21,175, and there are still a few thousand of floating costs that I have not gotten numbers on yet.  This is a bit of a bummer, but Lila is worth it :-)   I know deep down in my heart that Lila will benefit tremendously from this treatment, and that she will soon be running circles around Nora (whether it is with her walker having more control, with sticks, or independently).  She has amazing strength, and it can only get better.

WAIT...ONE MORE THING!  I forgot to share that Lila stood independently for 15 seconds yesterday, and then followed with 20 seconds (her legs were shaking like crazy on the 20 second round :-).  Amazing!!! More progress updates to come!

Love to you all :-)

Friday, June 17, 2011

CP and stem cells

I thought this was interesting information based on some new studies with adult stem cells (i.e. umbilical cord stem cells).  This is everything we hope for Lila, and more :-)

Adult stem cell studies show promise

Jun 12, 2011
Description: disease
With respect to adult stem cells being used in heart recovery attempts, a patient who had a failing heart for almost 18 months had injections of…


the day after arriving at the hospital. The patient's son, who had driven his father to the hospital for the stem cell treatment, was pleased to note that, beginning 36 hours after the stem cell injection into his father's heart, his father already had much more energy than before, had a much brighter countenance and was able to move around in ways that he hadn't been able for almost two years.

Nervous system
In the cases of cerebral palsy, traumatic brain injuries and strokes where adult stem cells were used, recoveries were almost miraculous in every case. More specifically, in the cases of cerebral palsy, adult stem cells were injected directly into the brain. As noted by doctors and researchers, what appeared to happen then was migration to the injured site.

Once they had found the injury site, adult stem cells then began to switch to the type of cells that attract a chemical named chemokines, which attract white cells and the body's own adult stem cells, both of which are needed in the healing process. Several days after the stem cell injections, a significant increase in fine motor skills was observed in the study's patients.

In every case of cerebral palsy, traumatic brain injuries and strokes, significant improvements were noted with significant recovery of function. Medically and chemically, stem cells were injected directly and they then migrated to that brain's injured areas and began their work.

In a spinal cord injury study, adult stem cells were injected directly into the injured part of the spinal cord where they, again, began doing their work. Again, significant gains in function were also noted.

The overall point to be made here is that the right kind of adult stem cells work in helping a person with most central nervous system dysfunctions to begin recovery…

Thursday, June 16, 2011

Still unsure

The paperwork that was to be submitted to the Health and Safety department today, was rejected all together and the doctors need to begin from scratch.  What?!?!?!?  This is getting ridiculous!  The permit paperwork had been back and forth for three weeks with this government agency, before they tell us to start over?  Our frustration levels rise....

Anyway, looks like it will be more like August when Lila gets a fighting chance.  We can then spend the entire month of September in LA for her four week intensive physical therapy program.  This is all hypothetical at this point, as who knows...we may not ever get a permit for this blood to cross the border.  Why did we ever think we should try to be legal about all of this?  If we would have driven it over the border ourselves, we would have had the treatment already...uugghhh!  So much for trying to do the right thing.

Anyway, we'll keep you all posted.....

Sunday, June 12, 2011

Disappointed, Frustrated, and Upset

On Friday we got the news that there are two permits we need to get the blood over the border, and one is being held up by the Government Agency, COPFERIS (or something like that).  What does this mean?  Well, it means that we have had to change everything for this week and are not headed to Mexico.  We are very sad and uneasy about the stress this will bring over the next week or two.

As we sat down last night to see if there was another way to make this happen at a later date, we became more  and more frustrated because the plans we have later in the summer would have to be altered, Lila's three week therapy session would have to changed, in which case we would not have the daycare options that we have available for July, Lila would not be able to start kindergarten on time, and the time and money it would take to change all of these plane tickets and therapies would be ridiculous.

So, every day this week we will be pushing the doctor's, couriers, Cord Blood Registry, and anyone else (so don't get in our way), to make this happen the next week.

Does anyone happen to know anyone in the Mexican government?  Maybe they can help?  Kind of a joke, but actually may be a possibility....hhhmmmmmm.

Thursday, June 9, 2011

Our nerves are running high

Good morning!

Lila's stem cell treatment quickly approaches....only 7 days to go!  Lila, Matt and I leave on Monday to head to San Diego.   We spend the night in San Diego at the La Jolla Beach and Tennis Club (yep, you read that right...crazy huh?).
SIDE NOTE:  My cousin works there, and had found out that her friends and family get a discounted rate at the La Jolla Hotel across the street, which the Beach and Tennis Club owns.  So, I called Lindsay to inquire.  Since she had never made such a request before, so she asked this friend of hers where to send an email with Lila's story and who to ask about the discounted rate?  Lindsay was told to send it directly to her, and the request was then presented to upper management.  Long story short, The La Jolla Beach and Tennis Club has comped us a week stay in a two bedroom suite with a full living room, kitchen, deck,and private beach access.  WOW!  This is amazing, and Lisa probably has no idea exactly what she has done for us.  Lila will be able to get the rest she needs, before and after the treatment, and Matt and I will actually feel as though we have gotten a break from all of the stress and chaos that has consumed our lives for the past 6 months.  I can take a deep breath and smile when I think about the generosity of Lindsay, Lisa, and the staff/owners at La Jolla Beach and Tennis Club!  Thank you!!!!

Ok, back to the plan...We will stay in San Diego Monday evening, and then Tuesday morning we will get picked up and be shuttled across the border to the hospital.  The hospital is said to be in a business district that is about 5 minutes over the border into Tijuana.  This is an area that people come to from the states, daily, for work and the like.  Very safe and clean.

Anyway, upon our arrival at the hospital, Lila will have some blood work drawn and then we will get situated in our room.  We will spend the night at the hospital Tuesday evening, and Lila will have the treatment Wednesday morning.  Administering the stem cells (30% IV and 70% intrathecal-spinal), takes about 1 1/2 hours.  We will then spend the night at the hospital Wednesday evening and be released sometime on Thursday.  A shuttle will take us back to La Jolla, where we will rest for two days, and then fly back home on Saturday morning.

Prayers are welcome for Lila, our travels, the doctors, and my Mom (as she stays home with a very active 18 month old...hahaha) :-)

Saturday, June 4, 2011

Why the four week intensive therapy program?

We, the parents of special needs children, sometimes feel as though our kids are not making as much progress as we had expected.  Going to physical, speech, and occupational therapy every week for a year, may result in holding the crayon properly and using 4 word utterances.  In that last sentence I was tempted to use the words 'only' and 'just', but this is how I feel, not how Lila feels.  These children may spend each week working so hard to just keep their legs in line as they take steps, and may not grasp that before 6-9 months of time.  That seems like an eternity to someone who can just inherently take steps, but we have found that it's the little things in life that help these kids more than we could ever imagine.

In an effort to try to explain why we believe that Lila would benefit tremendously from an intensive physical therapy program, I felt as though Kaitlin could explain it better than I could.  Kaitlin's story below will explain her experience with an intensive therapy program, and exactly what I mean by "managing our expectations".  It's the little things that can change a child's life with special needs...
Hi everyone,
     My name is Kaitlin Hickling.  I'm 25 years old and have spastic diaplegic Cerebral Palsy which affects both of my legs.  When I was two and a half years old, I couldn't even sit up by myself.  In Canada, the government provides for maybe one hour of physical therapy a week.  If you want any more than that you need to look into hiring a private physical or occupational therapist.  My parents hired a private therapist so that I was receiving a total of two hours of therapy a week.  By the time I was five, I was in a Kaye walker pulling it behind me, (the incorrect way to use a Kaye Walker because it teaches kids that they can lean back and there will be something there to stop them from falling; as soon as you get them on any type of cane though, that security is no longer there to stop them from falling backwards when they continue to lean).  I was doing pretty well with the walker; going pretty fast and running over lots of toes, but the progression was very slow and starting to decrease. 
     When I was seven my parents heard about something called Conductive Education in Budapest, Hungary.  It was an intensive physical therapy session that ran 5 or 6 hours a day five days a week for 5 weeks.  The intensity of this program can be compared to sending your child to a gymnastics or ballet camp for 5 week instead your average summer camp.  It was about the farthest away from easy as you could possibly get.  Even the mentality was different.  In one on one physical therapy, in my experience, a lot of the exercises were done to you and required very little true participation and almost no problem solving skills whatsoever.  The expectations were low and if you were stubborn enough to resist cooperating in the therapy, eventually your hour would run out and you would, for all intensive purposes, get your way.  Conductive Education, on the other hand, was nothing like this.  First of all you were in a group setting so all of the attention was not solely focused on you.  Group atmospheres can be good many ways:

          1) You know or realize that the person is not there solely to cater to you so it makes it more difficult to distract the Conductor or therapist from the task at hand because they could just go work with another child therefore meaning you lose out on being the centre of attention

          2) When you're having an off day where it seems like you struggling to do the simplest things, seeing another child, your peer, accomplishing whatever goal was set out for them, it gives you a second wind.  It inspires you enough to strengthen your determination and resolve to accomplish your own tasks in a way one on one therapy never could.

          3)  You make lifelong friends with kids who really do understand where you're coming from and what it feels like to be a disabled child.  You ARE equal.  You ARE the same.

     I started walking independently while I was in that class in Hungary.  I started taking 2 independent steps.  My father, who was a commercial diver at the time, came up to visit me around the fourth week.  He was a little annoyed at the fact that he spent all this money to send me to Europe to learn how to walk and I was only taking two independent steps.  I explained that though two independent steps may not have been exactly what he was looking for, these two steps and the ability to side step while hanging on to things now gave me the independence to go from table to table at MacDonald's and make my way over to the bathroom by myself without needing any help.  I could go to my friends' houses and get around without needing to rely on anyone or needing additional adult supervision.  It might not have seemed like a lot but to me those little things were huge.
      We kept up the work when I got home and shortly after I turned 8 I took 20 independent steps.  Shortly after that, my father opened up the Ability Camp which as far as we can tell was the first Centre for Conductive Education in North America.  The Ability Camp is a year round facility where families come and stay for 5 weeks at a time.  The main goal of Ability Camp is to help the kids achieve their independence so as they get older they can be as independent as possible without needing caregivers or added assistance.  The exercises are also based around activities you'll find in everyday life; how to get up and down stairs or a ramp, how to manoeuvre on uneven terrain like the ground outside. how to fall safely, how to feed yourself, potty training, speech, fine motor skills such as crafts and various other activities, etc. 
     We've been here for 16 years.  A few years after we opened, one of the families attending our camp told us about Hyperbaric Oxygen Therapy.  As my father used to be a commercial deep sea diver, he was very familiar with chambers.  We started offering Hyperbaric Oxygen Therapy and saw amazing results for a variety of different issues.  It helped to improve balance, speech, reduce spasticity, improve focus and in one case made a significant improvement in IQ points.  Ability Camp now offers both therapies in combination and there are free accommodations that are right onsite to every therapy offered. 
I hope you all have enjoyed Kaitlin's story, as we felt that this explained what Lila is sure to think as a child with CP.  This therapy program may be the biggest factor in helping the stem cells to work at their optimal level, as the stem cells need oxygen to grow and work their magic.  So the school of thought is that the more you are moving, the more oxygen is circulating through your body, then the better chance the stem cells have at doing their job of healing.

This program will cost $7600, not including travel and expenses.  Lila is more than worth it, and we will do everything we can for her to have a better future full of independence!