30 November 2010

If a dog can have stem cells...

Hundreds of animals including dogs and even horses have been treated with stem cells here in America. They have been doing it at this practice alone since 2005! This makes me so angry because animals are getting treatment here and our children can't. Parents are having to take their kids out of the country in order to get them help, hence the high price and the need for donations, fundraisers and spaghetti dinners.

We shouldn't have to go to another country to do this.

It will be another 10 years or more before we see stem cells being used here in this country. Why on earth will politicians, who've never had to deal with the issues us parents face, not allow stem cells from the patients OWN body to be used? When you hear stem cell research, anymore people automatically think of embryonic stem cells and the issue is shut down. When I talk about stem cells I am not talking about the killing of babies to gain embryonic cells. That is an entirely different issue. I do not support fetus cells being used. I support the research and the use of the patients cells, their own adult stem cells, to be used for healing.

If our beloved dogs can receive the healing benefits treatments with their own stem cells, then our children should be able to as well. 

post signature

29 November 2010

Follow up to the neurology appointment

I left off the last neuro post saying that the neurologist wasn't keen on stem cells. I mean, he wasn't even interested in them at all! I brought up stem cells and he almost laughed it off as a scam! I was really shocked about it because this was a neurologist at Chapel Hill. A reputable institution. Duke is right down the road and they are already doing stem cells for kids with cp if they have banked their own cord blood. It's not like stem cells is a stretch of the imagination or something...it's happening! It's been happening for years.

The neuro said that stem cells were a waste of money and that Duke was going to be getting into trouble with it. Huh? My heart plummeted because I knew I wasn't going to be getting any useful information out of this Dr. I knew asking him about hbot wasn't going to go over well either so I just straight out told him that we had done it before he could say anything negative. I also told him that our son was using his arms for the first time ever after our last round and that we had seen great improvements in Liam. He really skirted around the hbot topic and didn't say much of anything about it.

We quickly got on the topic of the new medication, sinimet, and that was how we ended our visit.

Here's how detached this appointment was: the Dr didn't even tell us when to come back for a follow up. He puts my little boy on a new drug that actually crosses the blood brain barrier and he doesn't need a specific follow up? Not only that, but I read in the RX information today that you just can't stop this medication once you start it. They have to be weaned off. Well, heck if I knew that! He never said a word about it.

I was trying to not have any defined expectations about meeting this Dr.

I am really saddened by the two neurologists we have met. They have been so closed minded to options that aren't being paid for by insurance and medicaid. You have parents saying that these things are working and helping their kids and we have Dr's who just won't listen. Or just don't care. And I just can't figure out why.

**eta: He said that kids like Liam would never walk or talk and if he had some of his good grey matter left we might be able to get Liam to communicate with some device. Yeah, that's how little he got to know Liam in that appointment.
post signature

28 November 2010

Thanksgiving & birthday blessings

Liam was the show at our Thanksgiving dinner this year. He started laughing and couldn't stop.

We still aren't sure what was so very funny.

But it doesn't matter. We love hearing him laugh.


Two days after Thanksgiving we celebrated Liam's 3rd birthday. After three years, it's still very bittersweet. While I am so very thankful for Liam and the day we get to celebrate his life, I am always saddened by memories of his early birth and his twin brother, Brady. I have to fight off the melancholy that tries to overtake me. Even though we get to celebrate Liam, there's just a lot of baggage to overcome. Maybe if Liam wasn't facing so many challenges it would be easier to move on. I don't know.

 Liam, though, did have a wonderful day. We would break out into birthday songs for him throughout the day and he would smile. But by far, his favorite was a little Disneyland song we heard years ago on Rylie's 10th birthday.

"This is your birthday song! It isn't very long.
Ok. That's it!"

And that's really all there is to it! But he thought it was hilarious.

Unwrapping his first present.


Trying to eat the paper.

He loves this drum!

Getting serious about his skills.

A big #3 for the birthday boy and a single candle in honor of Brady.

Waiting to blow out the candles...


post signature

24 November 2010

A new neurologist

Liam had an appointment at Chapel Hill this past week that I hesitate to even mention. It was, for all intents and purposes, a complete waste of time.

People don't go to a neurologist unless there's a problem. So, I know they don't have the greatest job in the world. They don't get to spread peace and happiness with all of their patients.

I really just wanted to get some information from him about HBOT, stem cells, and a new medication to help with his ataxia/athetoid movements.

He said Liam has spastic diplegia in his legs. That mean that he has higher than normal muscle tone and it affects both legs. We already knew that. Fortunately, Liam's high tone, while it causes trouble, is not severe for now. What I found interesting was that when he checked Liam's reflexes in one leg, both legs would bounce. It was fascinating. And it wasn't normal.

Then he said that Liam's upper body is either severely ataxic or was athetoid.

Ataxic is the inability to grade your movements and will cause the person to move all over the place while trying to get to one spot. It is planned movement that is very uncoordinated. Athetoid is when the body moves uncontrollably because the brain is telling it to move even when they are not wanting to.

The neurologist felt that Liam was athetoid because if he was ataxic, he was severely so.

The therapists and myself included feel that Liam is severely ataxic. He does want to move and when he goes to move, he is all over the place. And when he doesn't want to move, he lies perfectly still. He does not show the normal patterns of an athetoid cp kiddo.

The neuro did say we could try Liam on a drug called Sinemet. It is a drug that crosses the blood brain barrier and activates his dopamine receptors. It is commonly used in Parkinsons' patients.

See that big bundle of tissue at the base of the brain? That's the cerebellum. And see where the dopamine pathways run? They run right to the cerebellum, which Liam doesn't have.

One of the side effects is nausea and vomiting. And that makes me very, very nervous. Liam is doing fabulous on his current diet. He doesn't vomit anymore.  But, I'm willing to give this med a try if it would help with his ataxia.

Oh, and his opinion of stem cells and HBOT?

He thought is was complete b.s.  But that's another post.

post signature

17 November 2010

November is Prematurity Awareness Month

How fitting that my little survivor, who beat all the odds stacked against him and survived, is born in the month that seeks to raise awareness about prematurity and it's affects?
Liam at only 3 days old. He wasn't any bigger than the Dr's hand.

Today is National Prematurity Awareness Day.

Did you know the US ranks as a D for premature births??

1 in 8 babies are born too soon.

More newborns die from prematurity than any other cause.

The serious effects of prematurity can last a lifetime. Just ask Liam.

Prematurity sucks.

Liam spent 3 months in the hospital before coming home. Brady didn't get to come home.

Liam at 2 weeks old. Still no bigger than our hands.

If you'd like to learn more and see where your specific state ranks you can check out March of Dimes. 

You can also wear purple today in honor of all the little ones who lost their fight and all the ones who will fight for the rest of their life.

post signature

16 November 2010

It's a simple procedure

Here is more information on what the procedure entails:

How is Autogolous Adult Adipose Stem Cell Treatment Administered?

It is a four hour outpatient procedure involving the following:

• Harvest: Using a proprietary but simple procedure similar to tumescent liposuction, 100cc of adipose tissue is harvested from the patient

• Breakdown: The adipose tissue is then broken down using a combination of Collagenase Type 1 Solution, and a proprietary Cell Preparation Medium.

• Separate: Using standard techniques, the Stromal Vascular Fraction (SVF) which contains Adult Stem Cells (ASCs) is separated from the fat cells.

• Isolate: ASCs and other progenitor cells are then isolated from the SVF using standard techniques.

• Wash: The cells are then triple-washed with saline to remove any traces of the collagenase and cell preparation medium.

• Activate: The isolated ASCs are then suspended in the person's own platelet-rich-plasma (PRP) growth factors and activated with AdiStem's red/yellow/green laser. This 'awakens' or activates the dormant ASCs.

• Infuse: The cells are then administered back to the patient through one or more of the following modes of administration:
    Intravenous: The ASCs are administered through a standard intravenous drip

What happens to Stem Cells after implantation:

* Stem Cells are disperesed into the adjacent tissue and become smooth
* Stem Cells differentiatte into component cell types and integrate with the target tissue or organ
* Stem Cells begin to secrete several essential growth factors (see list below)
* Stem Cells start to attract the growth of blood vessels to facilitate tissue formation

And then healing begins!!

Now, stem cell treatment is not a guarantee of complete healing for Liam. No man can make that claim. But, we know that God uses man's intelligence in science to heal people all the time. For example, chemo doesn't work for every cancer patient. Sometimes it takes more than one round of chemo (it could take more than one round of stem cells). But you don't know if it will work at all unless you try.

God heals people all the time through modern science and medicine. The thing is, man would be using Liam's own divinely created cells to help him heal. How cool is that?

post signature

15 November 2010

A recent convo...

Me: Liam, it's time for bed!

Liam: Smiles, gets excited.

Me: Do you want to fall asleep in momma's bed?

Liam: Smiles, gets very excited.

Me: Ok, here's momma's bed! Now, it's time to go nigh-night. Here's your blankie.

Liam: Smiles, gets excited and smiles some more.

I then tell him all about string theory and what the basic ideas behind it are.... He really liked the idea of a parallel universe.

Then I turn out the lights and Liam settles in under his blankie.  He waits for a few minutes and then starts to whine and cry.

15 minutes later, he's still crying.

30 minutes later, he's still crying and whining. This is highly unusual as Liam normally goes right to sleep (he doesn't nap during the day so he's normally exhausted at bedtime. Although we do have to make him go to bed, otherwise he will stay up until he's so tired he's whining!).

45 minutes in, I turn on the bathroom light for a night light thinking he might want a bit of light.

Liam is still fussing until I turn on the light and he instantly starts LAUGHING.

Me: Liam (trying to stifle my laugh)! It is not time to play. You have to go to bed. It's time to go nigh-night. No more theories about the universe!

I turn the light back off while he again resumes his 'crying'. He continues to cry for a few more minutes.

Me: Okay, Liam. If you are going to keep crying you will have to get in your bed because Momma and Daddy need to sleep.

I put him in his bed, which is beside ours, and he still fusses and whines. He eventually falls asleep although I have absolutely no idea how much longer he whined because I fell asleep way before he did. =)

   *Even though these conversations with Liam are one sided, Liam still 'communicates' to us in his own way. I hope that one day he will be able to communicate with words, maybe his adult stem cells will be the key. But for now, we continue to have one sided convo's.

post signature

12 November 2010

Baby, it's cold outside...

Cool fall weather has finally set in around here in eastern NC! We've even had to turn the heat on already.

While Liam loves to be cuddled under a blanket, he can't use his arms right to keep them under the blanket and warm while he sleeps. He usually keeps them out and up but at the very minimum they are out and down. They are never under a blanket for long. And they get very, very cold while he sleeps.

So, I started having him wear his socks on his hands while he sleeps!

This is how I find him every morning, arms up and out. =)

They still get cold, but at least they aren't like ice cubes anymore when he wakes in the morning.

post signature

09 November 2010

Why use Adipose Stem Cells for Liam

I will be posting information regarding stem cells and what it all means to be able to do this for Liam (if we even can). I know some people are wondering what it is, what it means, how it's done, if it's safe, etc... And why we need so much money.  I will try to answer all of that in the next few posts.

For now, here is a simple rundown on the type of stem cells (fat/adipose) we want to use.

What stem cell therapy from adipose (fat) stem cells is:
Adipose derived stem cell (ASC) is a somatic stem cell contained in fat tissue. ASCs are cells that abundantly exist in tissue, and therefore, they are ideal as a cell source in the field of regenerative medicine.

Adipose tissue yields a vast abundance of ASC's for transplant:
Compared to any other source, the vast amounts of adipose tissue (depots of fat for storing energy) especially in the abdominal region, by sheer volume of availability, ensure an abundance in numbers of ASCs ranging in the millions per unit volume. In addition, harvesting ASCs from adipose tissue through simple, minimally invasive liposuction under local anesthesia is relatively easier, painless and poses minimal risk to the patient compared to all other possible methods.

     *As long as Liam is chubby enough in his tummy area, we would use the fat from his abdomen.

Adipose tissue ASCs (AT-ASCs) are extremely similar to stem cells isolated from bone marrow (BMSCs). The similarities in profile between the two types of ASCs range from morphology to growth to transcriptional and cell surface phenotypes.Their similarity extends also to their developmental behavior both in vitro and in vivo. This has led to suggestions that adipose-derived stem cells are in fact a mesenchymal stem cell fraction present within adipose tissue.

post signature

05 November 2010

I have got to grow thicker skin.

It happened again! I know you all might be getting tired of this but I am starting to find it ridiculous.

Liam had fallen asleep and I needed to make a quick trip into Target. I put him in the sling and carried him in that way. He woke up right away but was content to just hang out with me while I picked up a few items.

As I was standing in the aisle an older woman approached me and asked me if Liam had Down's Syndrome or if he was autistic!! Like there is a visual benchmark for autism? I am truly thinking at this point, wth? Now, I know this lady has no idea the irritation that brings when someone does that to me. I completely understand that. But I did respond with a long "Noooo, he has cerebral palsy." And then she said she was sorry.

Except her sorry wasn't for assuming he had something he didn't. She was sorry that he had disabilities.

I told her not to be sorry.

She went on to say that her niece has Down's Syndrome and that God just puts these kids on this earth because they are so special. That they just have a special place here.

I agreed with her on that and told her that Liam is special and that he shouldn't even be alive. I told her that he only weighed one pound when he was born but he's one of the sweetest people I've ever known even in the face of all of his challenges.

She started to rub Liam's head and then said again that she was really sorry.

I told her again that she doesn't need to be sorry. If God put him on this earth because he's so special and he was in a special place, what is there to be sorry for?

She agreed with me that that was definitely true and then we parted ways.

I understand that this woman was not trying to be mean and was not trying to hurt my feelings. I get that. She was a very nice woman. She has a family member with Down's and she was trying to relate to me through that disorder. I also know that you can tell that Liam has something 'wrong' with him because he can't hold his head up. I understand all of that. I appreciate that she was trying to relate to me. But the way in which she kept telling me she was sorry about Liam was really sad. And she kept saying it in front of him.

Liam isn't stupid. He understands a lot of what goes on. One day, he is going to get what these references and apologies are about. And I want him to know that he should NEVER be sorry for what he has to go through. And that he should NEVER feel sorry for being who God made him to be. He is special. He is unique. And we love him no matter what.

Do I just need to get thicker skin? It's going to be hard to do because I am sensitive about what Liam goes through and what he faces. And while in the worldly scheme of things it isn't fair what he has to face, I know that Liam is here for a reason, he does have a purpose and we are very proud of him.

post signature

04 November 2010

Individualized Education Plan or IEP for short

Because Liam is delayed he has received services through our early intervention program starting when he was just a few months old. Therapists come to your home and work with you and your child in order to help them get a good start and get your child the assistance they need to progress developmentally.

This last year we decided to take Liam for private therapy in a clinic setting because he finally qualified for Medicaid and they wouldn't allow us to do private and in-home services at the same time. By going private we were able to give Liam consistent therapy on an ongoing basis 5 times a week (3 sessions on Wed. and 2 sessions on Fri.). With early intervention we were lucky to get 3 in a week. Having medicaid and being able to go the route we have has been a big blessing for Liam. He has blossomed in the last 6 months.

Because he is globally delayed, when he turns 3 he has the right to start receiving services through the school district instead. And Liam will be 3 in just a few short weeks!

To get Liam ready, the school contacted us a while back and I met with them to make sure they had all of the proper info about Liam. Then we set up a time for me to bring Liam to school and have an entire team meet with him (OT, PT, SLP, LEA teacher, psychologist, and vision teacher). Liam did ok at this assessment but I knew and they knew that they didn't get a good picture of who Liam is and what he can do with his limited skills. So I was thrilled when the PT asked if she could come to the home and see him in his world.

*Totally irrelevant picture
When the PT came to the house, I showed Liam off as best I could. He was having a great day that day and I knew she was getting to see the real 'Liam'. She said it would really help them in writing the IEP now that she had come to his home.

Well, we finally met today at the school for the big IEP meeting. I had been nervous about it but excited at the same time. I knew that by getting services through the school it would open up new experiences and opportunities for Liam that he doesn't receive right now in the clinic. But I was afraid of what the IEP goals would be/wouldn't be and if they would just say 'Liam's too complicated' (I'm pretty sure they wouldn't say that but I was still nervous).

At the meeting today we went over Liam's strengths and weaknesses and what kind of goals we were looking at making for him in this next year. He is right at the next stage/level for so many things and those were all written into the IEP for him. But the biggest thing for Liam is that they are going to work with him in his world. The OT, PT, SLP, vision, and LEA teacher will all come to our house to help Liam. Not only does that save me time in driving him back and forth to the school for therapy, but it keeps Liam in his environment where he works the best. And the greatest thing of all is that we are still able to keep our private clinic therapies for Liam through medicaid.  So, that means Liam will be receiving some form of therapy/services almost everyday of the week! While I know this may sound like a lot, it's really not. And it's going to be so good for Liam to be receiving so much attention and therapy. He really needs it.

post signature

02 November 2010

Hooo Hoooo

Since I wrote mom's post last year on Halloween she thought I should follow tradition and do it again this year too!

Can't you tell what I am?

I'm an OWL!

Mom made it for me.

I heard her say it took her less than 10 minutes and only $10 to do. 

I guess that's good, right?

I do know I loved wearing my hat!
It was fun to grab it and pull it down over my face! And I loved just holding onto it.
And every time mommy made those silly owl sounds I would laugh.

I can not keep a straight face when they get all silly like that!

We live outside of town so we had to drive into some neighborhoods to go trick or treating. 

I did get bored after a while though. 

Since I can't go up on everyone's porch in my chair, I decided I'd rather stay in the car with mom and dad while my brother and sisters went door to door. 

That was fun. 

I got to sit in the front seat!

I was really happy that Rylie went with us this year. 
She looked so pretty.
She thinks she's getting too old but I was glad to have her with me. 
I think she loves me a lot. Look at that kiss she gave me!
I really love her too.

I don't know what Ian and Aidan were. 

Luckily I don't get scared about stuff like that. 

And Ian kept taking his mask off so I could see him under there.

They did get a lot of candy! 

I'm not sure what all the excitement was though. 

I'm still of the mindset that food isn't very much fun. 

But, maybe one day I'll check out what that chocolate stuff is.

My mom says it's amazing and helps her get through the day...whatever that means.

I still think food is over rated. 

Mom says I'm in the minority. 

And I don't know what that means either.  

Oh well. 

I hope you all had a great Halloween like I did! 

And that you got lots of that chocolate stuff too! 

I sure know it makes my mommy happy.

post signature