HEAVEN'S VERY SPECIAL CHILD

A meeting was held quite far from Earth!
It's time again for another birth.
Said the Angels to the LORD above,
This Special Child will need much love.

His progress may be very slow,
Accomplishments he may not show.
And he'll require extra care
From the folks he meets down there.

He may not run or laugh or play,
His thoughts may seem quite far away,
In many ways he won't adapt,
And he'll be known as handicapped.

So let's be careful where he's sent,
We want his life to be content.
Please LORD, find the parents who
Will do a special job for you.

They will not realize right away
The leading role they're asked to play,
But with this child sent from above
Comes stronger faith and richer love.

And soon they'll know the privilege given
In caring for their gift from Heaven.
Their precious charge, so meek and mild,
Is HEAVEN'S VERY SPECIAL CHILD.


by Edna Massionilla
December 1981

~~~ I just wanted to share this... a friend shared it with me today in response to my One year ago post on a message board I go to... Thanks Manda Panda! ~~~

one year later

Ok, so one year and a day later...
Austin was diagnosed on January 25, 2008.
That day changed our lives forever... I wish more than anything that I would have been blogging at that time... I’d love to be able to go back and read some of those thoughts, and emotions that we were experiencing at that time... It was a horrible time for us... Completely devastating... Our son’s life changed in the blink of an eye...

I look back now, and sometimes I wonder how Mike and I made it through that... I shut down... I was a wreck... I remember just crying and crying for days on end... I was so upset... how could this happen... why me... more than that... why my child... what did I do in the past that was so horrible that my child had to deal with this...

And then slowly I started to realize that Austin was still .... Austin.... he was still my little boy... he was still the one that I loved so entirely... and he was still happy... sure ... his 23 month old self had no clue that he was different... he was too little to understand that...

The reality of SMA still hits hard sometimes... and I still tear up when I think of some of the things that he’ll never be able to do... and when I have to deal with people who just don’t get it... or with people who think they get how I’m feeling... but they don’t... how could they...

Overall, we’ve come a long way... and we are all three very happy... Its still hard... but honestly our life didn’t change... how could it... we were already dealing with the SMA before the diagnosis... it just didn’t have a name... Austin is actually stronger now than he was when we got the diagnosis... and he can do things that I never thought I’d see him doing... I am so proud of him and I can’t wait to see what his future holds...

He told me a few days ago that he was going to be “A rockstar” ... and I believe him... The child has a love for music like I’ve never seen in a baby... he’s happiest listening to the radio (or Pandora... or youtube... lol) singing along... Santa brought him a guitar for Christmas... and he loves playing music and singing songs...

Its hard for me to believe that it was just a year ago that we were getting this news that we thought had ended our life... If anyone told me then that our life would be like this now, I’d never have believed them... I would have never imagined that Austin would be in preschool... doing things that every other kid his age does...

I want to thank all of you for standing by us... praying with us... and helping us find our way to this life that we have now... I truly do live in paradise... and I really do love my life...

I wish I could find Missy’s email... or phone number... or something... she helped me so much... she was the second contact I made in the SMA world... and she chatted with me through email and IM for hours while I sobbed and cried about it... and I then she helped me realize that nothing changed... we just had a name for the reason that Austin fell so often... And she helped me meet other great families... through that I found the hope I needed ...

A month later Austin started the VPA treatment... and we haven’t looked back... I can’t tell you how excited I am about the promise of Stem Cell treatment... I believe with my whole heart that there is a cure... and that they are close to finding it...

If you have time please visit http://www.fsma.org/ donate if you are able to... or at least spread the world about SMA... so that Austin and children like him can get the cure that they need.

not Me Monday

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

This week has been crazy... As you know we are right in the middle of moving...
That being said, of course I was well prepared and had everything packed...
When my inlaws arrived to help us move, of they absolutely did not have to help us pack at all... Everything was clearly labeled and I had a system to make sure that the most important things got to the house... and I did not have to wonder where I was going to put anything... I already had a plan...

On the subject of moving... I absolutely didn’t have to wear the same pair of pants EVERYday this weekend because it was the only pair I grabbed... and when I went back to pack up more clothes, I absolutely did not forget to load them in the car and only realize it once I was getting out of the shower.... nope, not me...

I also did not give in and let Austin stay in a pull up all day Sunday... I’ve worked way too hard to potty train him to just give in on something like that just because it would be easier to not have to worry about accidents while we were out shopping.. nope not me... I’d never do that....

I did not start to unpack the same box about 4 times, and all 4 times decide that I would wait until later... I mean, I know that it has to get unpacked...

Mike and I did not go shopping this weekend and spend $200 on dog houses, and then proceed to let the dogs sleep inside... nope... there is no dog hair in my new laundry room...

I did not buy a new toaster, and a $50 garbage can because “I liked them”... I just bought a new house... I have more important things to worry about then spending $80 on two items.... (good news... my new toaster matches my new applicances... well I mean, it would if I would have bought a new toaster... which I didn’t...)

We absolutely did not buy a new tv... nope... not us... I mean, there was nothing wrong with our other tv... and since we are really not the kind to just spend money on things we don’t need, there is no way that you would walk into my front door to see a brand new Sharp 42 “ LCD tv on our TV stand...

I did not silently shed a few tears when I went to bed Sunday night and think to my self “I want to go home”... I was home... It just seems so big and empty right now...

Most importantly I did not just waste half of my lunch break typing this up... nope not me...

What about you??

The last night

Well, today is the last night in the trailer... we close on the house tomorrow.... We are going to move a few small things over tomorrow, and we are planning on spending the night there... even if that involves sleeping on the blow up mattress...

I will take a bunch of pictures, but I don't know when I will be able to post them... we wont have internet hooked up until friday... and then the big part of the move starts Saturday... I'm excited and nervous and happy and sad... and scared...

I never ever though we'd stay here forever, but I'm feeling a little bittersweet about the move...

I just wanted to let ya'll all know where I was and what was going on before I disappear for a few days... just bear with me through the move... I will be back!

The date is set

Closing day is wednesday...
We have our final walk at 10am and then at 1pm we close...

I can't believe this day is here.. I mean its been a long road, but honestly it seems like just last week the house was a slab.... now we will be moving this weekend...

I'm thrilled... I can't wait... but I must admit that it is a little bittersweet... i mean, I will miss this place... I'll be glad to be gone... but this is where we started our family... this was where we brought home Austin from the hospital... I never ever thought that we would be here forever... its just a little bittersweet...

______________________________

Work is going a little better, I was pretty busy today... and I will be again tomorrow... then I'm off Wednesday... Things have just mellowed out a lot at work...
Emotionally I am feeling better as well... I am not nearly as stressed out... I mean, I won't lie, I am still anxous... but I'm feeling a lot better... just more peaceful... Not so emotionally spent...

Paradise is starting to looking sunny again.. the clouds have finally lifted....

______________________________

Austin seems to be adjusting well to preschool... He has had some set back with pottying... but today he didn't have any accidents... so that's awesome! I think with things being so weird at home (with the packing and no real routine anymore) and the new school is just a lot for him... but his teachers are awesome and are really working hard to help us out...

He is having a blast! And we haven't had any tears at drop off (yet...*knock on wood*) we did have a few tears one afternoon because he didn't want to leave, so that's nice... I'm glad that he is enjoying it so much...

He brings home his work everyday and its really cute to see how proud he is of what he has done...



I guess really that's about it... I am getting tired... and I still have a few things to do before I go to bed... so I'll try to update agian tomorrow...

not me monday

So, I ran across this awesome blog by MckMama...
and she host this fantastic thing every Monday... called "Not Me" Monday...

You know where you get to admit to all those things that you would never do...

So I figured I might as well give it a shot...

I did not let my (almost) 3 yr old son eat three scoops of ice cream after he didn't eat supper tonight... I mean, what kind of mom would do that?

I most certainly did not come home and not pack a thing... I mean, we are closing in two days, and I still have half a house worth of stuff to pack.. of course I didn't come home and just play on facebook and check all my blogs.... that would be a little irresponbile, don't you think?

I did not purposely not tell one of my co-workers that we are closing Wednesday just becaue I knew he had over heard me telling someone else about it... I mean, that would just be plain ole mean!

and while we are on the subject of work, it was not me who spent most of the surfing the web... wondering if the day would ever end... I mean, I had a lot of letters to get out... why one earth would I just spend the day online not working??

What have you not done today? or this week??
Come on... Confess... you'll feel better...

Bargaining?

Seriously... ?

When did my sweet little boy learn to bargain?
I’m sure it has nothing with me trying to bribe him to do things... but where-ever he learned it... I still can’t get over it...

I’ve seen him trying to trade toys with someone if they have something he wants... but last night has got to be the best yet...

It was bedtime ... and I told Austin it was time to go lay down...
He said he didn’t want to... we had been reading a book that had a picture of a monkey cooking pancakes so he decided he wasn’t tired, he was hungry for pancakes...

I knew better because he had eaten his supper already... and has recently gotten into the habit of getting out of going to bed b/c he was hungry...

So I proceed to tell him that it was really time to go to bed...

His response
“How ‘bout I sit in my bed, and you promise to bring me pancakes”

I was shocked!

I said “What baby?”

He repeated
“How ‘bout I sit in my bed, and you promise to bring me pancakes”

When I told him I was sorry but it was really time for bed he screamed “NO! HOW “BOUT I SIT IN MY BED AND YOU PROMISE TO BRING ME PANCAKES! Ok?”

*sigh*
He’s growing up way too fast...

Families of Spinal Muscular Atrophy Funded Stem Cell Motor Neuron Replacement Program.

This was posted on FSMA's website December 30 ,2008
click here if you want to read it straight from them.

FSMA has invested significant resources in alternative approaches that show promise to cure Spinal Muscular Atrophy rather than just treat the symptoms. In particular, we have invested $1.5 Million to develop a motor neuron replacement therapy for SMA, and we have made significant progress with our investment.
Our initial investment in stem cell research in 2000 funded efficacy studies using motor neurons from mouse stem cells. Results show that this therapy can provide benefit to rodents with motor neuron disease: a highly significant finding. In 2005, additional FSMA funding lead to the first, highly-pure therapeutic population of human motor neurons for cellular replacement therapy for SMA. This program is now progressing on the path to IND in collaboration with the biotech firm California Stem Cell, Inc. (CSC), and leading research centers at University of California-Irvine, and Johns Hopkins University. These motor neurons recently completed a series of critical animal safety studies prior to advancing into human trials for SMA.
Motor neuron replacement is at the leading forefront of current scientific knowledge, and as such is very high risk. However, this approach allows for the possibility of replacing lost motor neurons and so holds great promise for the patients and families in our community.

“FSMA provided the first financial support for my research program investigating the development of high purity human motor neuron populations from stem cells, and their application to animal models of SMA. This work has grown into a multi-tiered program that now involves several funding agencies, an industry collaborator, a clinical collaborator and FDA relations. I will always consider FSMA my partner in pioneering this technology, and moving it towards human use.” Hans S. Keirstead, Ph.D., Associate Professor of Anatomy and Neurobiology, Co-Director of the Sue and Bill Gross Stem Cell Research Center, University of California at Irvine.
Pre-clinical efficacy studies have been completed, demonstrating correct localization of CSC motor neurons in the ventral spinal cord, cell growth from the spinal cord toward the limbs, synapse formation with target muscle and functional reinnervation leading to restoration of limb function in animal models of motor neuron loss.

Results of the Safety Study for SMA Type I Clinical Application:
The pivotal safety study, required to support an application to begin FDA clinical trials, has recently been completed. Although final data analysis is still in progress, there were no negative outcomes of this study, leading to the conclusion that motor neuron replacement will be a safe strategy in the treatment of diseases such as SMA characterized by motor neuron loss.
The purposes of this study were to evaluate the capacity of a motor neuron progenitor cell population to form tumors following transplantation into the spinal cord, to determine whether motor neuron transplantation would induce allodynia (increased pain sensitivity), and to evaluate the biodistribution and potential toxicity of motor neurons transplanted into the spinal cord.
Results showed:
-No mortality attributed to treatment with motor neuron progenitors occurred.-No tumors occurred that were attributed with the transplanted motor neurons.-No statistically significant differences occurred between the cell buffer (control) and treatment groups in the clinical allodynia (pain) assessments.-No toxicological profile differences between control and treatment groups.-No gross or histologic findings were attributed to the transplantation of CSC motor neurons.
Preparations for Clinical Trial Approval:
“California Stem Cell has developed methods for the manufacture of clinical grade human motor neurons. It is the intent of CSC to gain approval to begin FDA-approved clinical trials for the use of these cells in development of a cell replacement therapy for SMA Type I. CSC is now preparing for a final FDA pre-IND meeting to take place in the first quarter of 2009, keeping us on track for a formal application in the second quarter of 2009 to begin a Phase I/IIA clinical trial in SMA Type 1.” Chris N Airriess, Ph.D., Chief Operating Officer, California Stem Cell, Inc.
Other preparations currently underway include: An external clinical trials coordinator has been engaged and medical community focus groups held to develop the clinical strategy for SMA trials; CSC manufacturing facilities and procedures have been audited for compliance with guidelines for clinical manufacturing.

Austin's in Preschool/

Yesterday was his first day... and it went really well...

He had a good time, and we even got some of his worksheets to bring home...

He had another good day again today... :) So far so good... This morning he was asking about Ms. Rhonda... so I'm half expecting a fuss tomorrow... but so far we've had two good days.. and here are some pics from his first day...

Before school:

His work from Monday:

And here is his finger painting from today

A Quick Trip

to the After hours clinic...

Result...

apparently he's just screaming in pain for the fun of it....

I was convinced that he must have had an ear ache... He was crabby and running a low grade fever... and when he woke up from his nap his ear was as red as a fire truck... and he was completely unconsolible... So we headed to the afterhours clinic...

While we were there he started perking up... and I assumed maybe it was the motrin I gave him before we went in...

Well, they checked his ears... nothing...
Checked his throat it was red...
ran a strep test...
nothing...

so he's fine... Just a crab.... poor babe...

Don't turn around for a second...

Because you may just find this...
I guess Oreo need a bath?

Preschool

So I breifly mentioned it in my last post...
Austin will be starting preschool Monday...
The decision of taking him away from Ms. Rhonda was really hard...
She has been nothing but wonderful to us, and so understanding and she has taken such good care of my little boy...
But there were times that I felt like there were too many kids... and I was really wishing that he was getting preschool... I work with him when I'm home... but I think he would benefit much more from a steady preschool...
Tuesday was his last day with her.. .she was closed Wednesday - Friday for New Years... it was a very bittersweet day... I cried... Ms Anne cried... and Ms Rhonda was even tearing up.... They said if he isn't happy he can go back... and I'm not worried about that... I really think he is going to enjoy preschool... and he gets along great with other kids... I'm going to miss Ms Rhonda and Ms Anne though... and I know he will too...

So I will try to update about his first day Monday night... I'm sure he'll be fine...

a new year

Its a new year...
Its January 1st 2009
The beginning of the year... a new start for some...

I can't wait to see what 2009 has in store for us...
2008 was a hectic year
It was the year that SMA entered our lives...
It was the year that we start building our house....
It was the year that we almost lost our niece....
It was the year that LSU football sucked for the most part....

This year really brought us closer as a family...
getting the devastating news that your child has a genetic disability that will likely get worse is absolutely heart breaking... I can not even begin to explain how hard it was the emotional toll it took on us was unbelievable...

We made the decision in May to start looking for a house... in June we found a new neighborhood coming up in a nice area with houses we loved... so we stupidly went to check them out... and realized that this could really happen... That we might really be able to own a house... one that was on the ground... so we talked to the mortage company and enrolled in a Home Buyers Club... and then in July we signed a contract to start building a house... although it isn't complete yet, its been a wonderful yet horrible thing to experience... I can't wait for it to be done...

As far as almost loosing our niece... My BIL and SIL split up... well she packed up while he wasn't home and to the baby back to GA where her family is from... After a few weeks he was finally able to get her and now has full custody of her... and we couldn't be happier for him!

Then there's LSU football... who knew I would be such a fan... I hate sports... but the Tigers got to me... and this year was almost painful to watch... they sure did end it right with the Chic-fil-a Bowl game... but gosh was the season miserable...

I am really looking forward to this year and what it has to offer...
We will be moving into our new home early this month... probably next weekend...
Austin starts preschool Monday...
We will be finding out more information about a possible Salt Lake City trip...
and only God knows what other wonderful things are in store for us.

I will continue to pray everyday for a cure for Austin and all the other kids... I will continue to help him get any therapy and treatment that may help him...

I hope that everyone had a good time last night... and that you all had your pork, cabbage, and blackeyed peas.... May the new year bring you and your family lots of joy!