J-ust M-e

Braced and balanced

2012-01-25T19:53:00.000-05:00

Saying that your child has no head control is a term that can mean a variety of different things. While in all instances it means that your child can not hold their head upright and independent permanently, it can mean that your child can hold their head up and in control for varying periods of time.

When I say Liam has no head control, I mean he has absolutely none. He can not balance his noggin up on his little neck. He will either let it fall back in order to keep it held up by his shoulders (called stacking) or he will fall forward where he can not pick it up to save his life. Literally. He can not pick it up (which is because of his very low trunk tone).We can shout, encourage, tease and prompt, but the muscles used to pick his head up do not respond and he will leave it down on his chest.

Liam doesn't like his head stacked or fallen forward so he tries to correct it. When it's stacked he will try to bring it in correct position and then once it gets upright it will fall forward where his head hangs down on his chest. This in turn makes him upset and he will use all the wrong muscles to try to upright himself and it just propels himself even farther forward making his body round into a ball. It makes breathing pretty difficult at that point.

We've been tossing around the idea of a neck brace for years. Therapists don't like to use them because they want the child to learn to hold their head on their own. But Liam is 4 years old and head control is still out of his grasp. We needed something to make learning in his chair easier.

We finally found this neck brace for him to be able to use. It is open at the neck front keeping his airway nice and clear. It wraps around the back with just a 2 inch piece wide of material that is soft and comfortable. We can attach it in seconds and he can then rest his chin and be upright allowing him to play.

It's been really helpful. I'm surprised at the simple construction and how well it actually supports him. We can use it in the stander and in his chair. I can actually leave him alone in his chair for the first time. He tolerates it for long periods of time. I can usually tell when he's done because he will fight against it by pushing forward with his head (which is what he does when he doesn't wear it).

We still do a lot of work with out it. Some days Liam will do well holding his head up in his chair, leaned against the head rest. But when we are working on specific tasks like communication, it's been a huge relief to take the head control out of the equation so he can work only on one task at a time.

70% success for TBI & Stem Cells

2012-01-19T16:11:00.000-05:00

Why didn't 60 minutes show this?? They said there is no treatment for cerbral palsy with stem cells. They show the bad apple and not the encouraging, positive news coming from adult stem cells. I guess bad news makes the Nielson's even when it comes to your health.

Autologous Bone Marrow Mononuclear Cell Therapy for Severe Traumatic Brain Injury in Children.
by admin on February 7, 2011

Cox CS Jr, Baumgartner JE, Harting MT, Worth LL, Walker PA, Shah SK, Ewing-Cobbs L, Hasan KM, Day MC, Lee D, Jimenez F, Gee A.

From the University of Texas Medical School at Houston, Departments
of Pediatric Surgery, Surgery, Pediatrics, and Diagnostic & Interventional Imaging; Children’s Memorial Hermann Hospital; University of Texas M.D. Anderson Cancer Center, Department of Pediatrics, Division of Cell Therapy; Baylor College of Medicine Center for Cell and Gene Therapy.

BACKGROUND: Severe traumatic brain injury (TBI) in
children is associated with substantial long-term morbidity and
mortality. Currently, there are no successful
neuroprotective/neuroreparative treatments for TBI. Numerous
pre-clinical studies suggest that bone marrow derived mononuclear cells
(BMMNCs), their derivative cells (marrow stromal cells), or similar
cells (umbilical cord blood cells) offer neuroprotection.

OBJECTIVE: To determine if autologous BMMNCs are a safe treatment for severe TBI in children.

METHODS: Ten children aged 5-14 years with a post-resuscitation GCS of
5-8 were treated with 6X10 autologous BMMNCs/kg body weight delivered
intravenously within 48 hours after TBI. To determine safety of the
procedure, systemic and cerebral hemodynamics were monitored during bone
marrow harvest; infusion related toxicity was determined by pediatric
logistic organ dysfunction (PELOD) scores, hepatic enzymes, Murray lung
injury scores, and renal function. Conventional magnetic resonance
imaging (cMRI) data were obtained at 1 and 6 months post-injury, as were
neuropsychologic and functional outcome measures.

****RESULTS: All patients survived. There were no
episodes of harvest related depression of systemic or cerebral
hemodynamics. There was no detectable infusion related toxicity as
determined by PELOD score, hepatic enzymes, Murray lung injury scores,
or renal function. cMRI imaging comparing gray matter, white matter, and
cerebrospinal fluid (CSF) volumes showed no reduction from 1-6 months
post injury. Dichotomized Glasgow Outcome Score (GOS) at 6 months showed
70% with good outcomes and 30% with moderate to severe disability.

****CONCLUSION: Bone marrow harvest and intravenous
mononuclear cell infusion as treatment for severe TBI in children is
logistically feasible and safe.

How stem cells heal.

2012-01-16T09:46:00.000-05:00

Scientists are learning so much about stem cells and how they are healing victims of TBI- traumatic brain injury.

How Stem Cell Implants Help Heal Traumatic Brain Injury

ScienceDaily (Jan. 12, 2012) --- For years, researchers seeking new
therapies for traumatic brain injury have been tantalized by the results
of animal experiments with stem cells. In numerous studies, stem cell
implantation has substantially improved brain function in experimental
animals with brain trauma. But just how these improvements occur has
remained a mystery.

Now, an important part of this puzzle has been pieced together by
researchers at the University of Texas Medical Branch at Galveston. In
experiments with both laboratory rats and an apparatus that enabled them
to simulate the impact of trauma on human neurons, they identified key
molecular mechanisms by which implanted human neural stem cells -- stem
cells that are in the process of developing into neurons but have not
yet taken their final form -- aid recovery from traumatic axonal injury.

A significant component of traumatic brain injury, traumatic axonal
injury involves damage to axons and dendrites, the filaments that extend
out from the bodies of the neurons. The damage continues after the
initial trauma, since the axons and dendrites respond to injury by
withdrawing back to the bodies of the neurons.

"Axons and dendrites are the basis of neuron-to-neuron communication,
and when they are lost, neuron function is lost," said UTMB professor
Ping Wu, lead author of a paper on the research appearing in the
/Journal of Neurotrauma/. "In this study, we found that our stem cell
transplantation both prevents further axonal injury and promotes axonal
regrowth, through a number of previously unknown molecular mechanisms."

The UTMB researchers began their investigation with a clue from their
previous work: they had determined that their neural stem cells secreted
a substance called glial derived neurotrophic factor, which seemed to
help injured rat brains recover from injury. As a first step toward
identifying the processes by which GDNF and neural stem cell
transplantation produced their beneficial effects, Wu enlisted UTMB
professors Larry Denner, Douglas Dewitt and Dr. Donald Prough to use
proteomic techniques to compare injured rat brains with injured rat
brains into which neural stem cells had been transplanted.

"We identified about 400 proteins that respond differently after injury
and after grafting with neural stem cells," Wu said. "When we grouped
them using a state-of-the-art Internet database, we found that a group
of cytoskeleton proteins was being changed, and in particular one called
alpha-smooth muscle actin, which had never been reported in the neurons
before."

Because so many of the proteins that changed were related to axonal
structure and function, the UTMB scientists then focused on traumatic
axonal injury. Initially working with rats, they confirmed that axons
and dendrites suffered damage from trauma; implanted neural stem cells
reduced this harm, as well as lowering levels of alpha-smooth muscle
actin inside neurons that were raised after trauma.

To probe further into the molecular details of GDNF's role in reducing
traumatic axonal injury, the researchers used a system in which human
neurons were placed on a flexible membrane that was then suddenly
distended with a precisely calibrated puff of gas. Their goal was to
simulate the sudden compression and stretching forces exerted on brain
cells by a blow to the head.

Initial results from this "rapid stretch injury model" matched those
seen in rat experiments, with GDNF protecting axons and dendrites from
additional damage in the period after trauma and significantly reducing
alpha-smooth muscle actin levels boosted by the simulated injury. In
addition, they found evidence linking alpha-smooth muscle actin with
RhoA, a small protein that blocks axonal growth after injury. Finally,
again taking a cue from their proteomic study, they turned their
attention to one component of a protein known as calcineurin, finding
that it interacted with GDNF to protect axons and dendrites in the RSI
model.

"We're quite excited about these discoveries, because they're highly
novel -- we now know much more about how GDNF protects axons and
dendrites from further injury and promotes their re-growth after
trauma," Wu said. "This kind of detailed study is essential to
developing safe and effective therapies for traumatic brain injury."

Other authors of the Journal of Neurotrauma paper include graduate
students Enyin Wang, Junling Gao and Tiffany Dunn; assistant research
lab director Margaret Parsley; Qin Yang of Huazhong University of
Science and Technology in Wuhan, China, Lin Zhang of Sichuan University
in Chengdu, China; and professors Douglas DeWitt, Larry Denner and
Donald Prough. Support for this research was provided by the U.S. Army,
the Coalition for Brain Injury Research, the Moody Center for Traumatic
Brain and Spinal Cord Injury Research, Mission Connect, the TIRR
Foundation, the China Scholarship Council, the John S. Dunn Research
Foundation and the Cullen Foundation.

Nanananananana

2012-01-11T22:42:00.000-05:00

Liam got his sweet looking Batman suit today. Boy he looks good in it too! This is the SPIO (which stands for Stabilizing Pressure Input Orthosis) that I have been wanting to try out on him for the last year. I'm keeping fingers crossed that insurace will pay for it because by having to go through an orthotist and have them bill insurance/medicaid the cost more than doubled to $450 where as if I bought it outright from SPIO it would have only cost $180. That is what is wrong with insurance and medicaid today...but that's another post.

Anyway.

This vest is so much nicer than the last ones we have trialed. This one has a lycra front that is smooth and form fitting. The back is neoprene and it has a crotch strap keeping it in place. And it goes down low onto his hips for additional stability and input which he sorely needs. Liam's sensory system is all wonky and this vest helps to give him the input he's missing for his core.

The SPIO seems to be made much better than the others we have tried, looks a whole lot better on and Liam was able to wear it all day today with no fussing.

He can easily wear it under his clothes and since it's winter we won't have to worry about him getting hot. The other vests we've used were too thick to wear comfortably next to the skin.

If we could just get Liam stronger in his core it would help him with everything else as well.

And when you laugh too much?

2012-01-05T11:48:00.001-05:00

There's no such thing.

But Liam can't catch his breath and he gets the hiccups:

Man isn't poor if he still laughs

2012-01-05T11:40:00.000-05:00

Liam got a new app this morning for vehicles. This one is Peekaboo Vehicles.

He loves cars and trucks and specifically likes the ones with wacky sounds. The sillier the better. This was his reaction the first time he played with this app:

Stem cells can help aging

2012-01-04T13:40:00.000-05:00

There is no end to what these God designed amazing cells can do.

Real 'Benjamin Button'?
Stem cells reverse aging in mice
By Linda Carroll

Scientists may one day slow down aging with a simple injection of youthful stem cells. They’ve just proven this can be done in mice, according to a study published Tuesday in Nature Communications. The mice, which had been engineered to mimic a human disease called progeria, would normally have grown old when they were quite young. But that changed when researchers injected muscle stem cells from healthy young mice into the bellies of the quickly aging mice. Within days, the doddering and frail mice began to act like they were living the storyline of “The Strange Case of Benjamin Button” as they started looking and acting younger.
“It was mind boggling,” said study co-author Johnny Huard, a professor of orthopedic surgery at the University of Pittsburgh School of Medicine. “When I saw them I thought, ‘Oh my God, I must have made a mistake and put the normal mice in the wrong cage.’ But they were indeed the mice we’d injected with the stem cells.”

Normal mice live about two years, Hoard explained. But mice with progeria age very quickly and die by the time they are 21 days old. Somehow the muscle stem-cells from the younger mice managed to reverse that premature aging process – at least temporarily. The stem-cell injected mice didn’t live as long as normal mice, but they did survive about three times as long as would have without the treatment. Huard suspects if he re-injected the mice they would live even longer.

Huard and his colleagues aren’t exactly sure what’s happening, but they’ve got some theories. Scientists have discovered that we grow frail when our stem cells age and lose the ability to self-repair. These “tired stem cells” divide slowly, Huard explained.He and his colleagues suspect the same thing happens, just more quickly, in mice and people with progeria.“People with progeria look like they are in their 80s when they are 20 years old,” Huard said. “Their skin looks very wrinkled and old when they are very young.” One of the biggest surprises for Huard and his colleagues was the impact on the brain from muscle stem cells injected into the belly. Even though the cells didn’t get to the brain, they still improved its health.“The number of blood vessels in the brains of progeria mice are significantly reduced,” Huard said. “But when you inject stem cells from a normal mouse into the belly of the progeria mouse, the number of blood vessels increases.”That means that the normal stem cells must be releasing some kind of protein that spurs the growth of healthy cells, Huard said.

Huard can the big implications of his research.“There’s a lot of money being spent in the world trying to delay aging,” he said. “It would be fantastic if we can apply this to human beings. It’s a very simple approach.”Huard can’t say how far in the future this might be, but his group has been using muscle stem cells to repair damaged hearts, bones, and cartilage.One day it might be standard for people to stash away stem cells when they are young so they can use this fountain of youth elixir when they start aging, he said.

Christmas Goodies

2012-01-03T23:37:00.000-05:00

New year, new goals: Post more than once every two weeks.

Christmas was amazing. It went too fast, as usual, but we eeked out every last bit of the day that we could.

Liam got a new swing:

It's large enough that he has a lot of growing room. The big kids can actually swing in this thing. It goes up to 150 lbs!

A laughing donkey:

This came from Hallmark and he doesn't have to press anything. He can just touch his hand over the belly and it giggles. It's perfect for special needs kids!

A remote control car:

Another good one from FP it is a large car that he just has to touch the ball on the roof and it will go.

A singing Elmo:

Liam loves Elmo and once we get this switch adapted he will be able to play with it by himself. For now he just tries to hug it.

And some clothes and other goodies including an iTunes gift card for fun new apps!

But Liam's favorite toy has been the donkey. He absolutely loves hearing this thing giggle.

Happy Christmas!

2011-12-24T17:00:00.001-05:00

I can't believe it's our fourth one with Liam already! Each year it gets better and a bit easier to deal with things however the Christmas four years ago is never far from my mind each time the holiday season comes around.

I am forever grateful for how far we've come, but I'll never, ever forget where it started.

I hope you all have a very Merry Christmas!

Love these amazing kids of mine!

Early Christmas Gift

2011-12-23T17:13:00.000-05:00

Because of Liam's issues we can't just run out and buy presents at the local Walmart. Things for him need to be thought out and planned in order for him to benefit from it, which sucks because I can't just see a cute toy for him and get it. I have to wonder if he can utilize it at all and if he can't can we adapt it so he can. Most things for him won't come from the local store.

So this year for Christmas I decided not to do much tradition at all for Liam. Oh, he will have presents under the tree, but they aren't just presents. They are learning tools/therapy tools that will benefit him better than a random toy from the dollar store.

I did get him an early present which I know is mundane but is vitally important for him and his future. It's a simple RAM mount for his ipad that mounts it to his wheelchair. Now the ipad is right where he needs it; at arm length and eye height. And he loves having it so handy.

The tray on his wheelchair was too low and although he could reach the ipad there it wasn't what was best for him physically.

This mount allows him to have it front and left (since he's a lefty) and is preparing him for using communication with either the ipad or a dynavox. We already use the ipad for communication but eventually he will need to go to a higher level than what he's at now. And consider that your mouth is always ready to talk for you. His "mouth" will be a device of some sort and it always needs to be at the ready if he is going to communicate through it.

I'm hoping this will get him started in the right direction.

Mommy's Little Piggy

2011-12-19T22:57:00.000-05:00

Liam sounds like a pig.

We aren't sure why but ever since his cold back in late October he has had some serious issues with his nose.

He clamps down on his teeth and snorts. Actually he's more like a bull than a pig. He sounds like he's getting ready to storm a red cape.

When at the pediatrician for his 4 year check up this week we found out he has an ear infection.

Number 132 of the sucky things that happen with your non-verbal child: They are infected and you have no idea because they can't tell you.

His sinuses looked a bit irritated apparently. So, here's hoping the amoxicillin clears up the ear. And the snorting.

Fail

2011-12-15T07:32:00.000-05:00

That was the result of Liam's swallow study done yesterday afternoon. I'm so frustrated with this result. He actually had a 50/50 swallow where half the time he swallowed fine and the other half he failed because he gagged on it bringing the barium back up into his mouth and tried to reswallow it but opened up his epiglottis enough to allow a bit of the food to get stuck there and then slide done his esophagus.

I'm upset because Liam used to be an entirely oral eater. And now he can't eat much by mouth at all. How do we fix that? How do you get better at swallowing than by practicing swallowing? How do we keep him from gagging? Does he just need more therapy? And if so, where do we fit that in to our already loaded schedule where medicaid is maxed to it's allowable limits?

I put in a call to his therapist who used to work on feedings with him. I'm hoping she has some good ideas of where to go from here.

The more you praise & celebrate your life, the more there is in life to celebrate.

2011-12-05T21:43:00.001-05:00

I have been so bad with blogging lately. Not that there isn't anything to blog about...that isn't the problem. Just finding the time in the holiday season has been so hard lately.

Liam turned FOUR on November 27th. We had some friends celebrating with us and they asked me some questions about that fateful day. It's hard for me to believe sometimes that 'it' really happened to me. It's hard to believe that the events of that day and the subsequent months really are our reality. Sometimes I feel like it happened to someone else....that it wasn't my real experience but one which I had in a dream. I just look back on all of those moments and can't believe they happened.

We celebrated this year with no cake since Liam won't eat it. I decided to do pie this year and had relative success with getting Liam to eat Key Lime pie. Relative success means I got in more than 4 bites and actually made it past the whipped cream to the actually pie. =)

Liam got a a Lightening McQueen remote control race car that he can actually operate himself. The controller is a big tire that operates the car just by pressing the button in the center. So if we hold the controller he can make it go by pressing the button himself.

Another year older...It's so hard to believe he's four!

iPad uses

2011-11-22T10:21:00.000-05:00

We love having the ipad for Liam. It's been such a blessing for us and him. We can use it for so many things that used to be bulky and large and inconvenient. One of the things I used for Liam when he was very small was a large light box. We would put black and white patterns on it, turn it on and have him focus on the images to help improve his sight. I would use it every night while doing tummy time on the floor. We gradually moved to colors and shapes and eventually it became a nuisance because it just sat around not being used anymore because Liam's vision had improved so much.

What would have been handy all those years ago would have been an iPad because you can now make your iPad a lightbox. There's a free app for it called Daves Light Box.

By using a light box app we can use the colorful holiday window gel clings for even more fun activities with the iPad. We have Liam pick out what colors he wants to use first or ask him which pumpkin is bigger.

It's just one more thing that we can do on this little pad that makes his world so much more fun.

Fun at home

2011-11-20T23:59:00.000-05:00

Liam's preschool teacher is all about getting Liam involved in what a typical preschooler would do...allowing him to enjoy experiences and activities that every kid should but that we have to modify and simplify for him as best we can.

So this week Liam got to finger paint!

We've been doing a 'unit study' on monsters and he got to make his very own monster face.

He had so much fun. And he got paint everywhere.
Next time we know to cover his wheel chair as well.

The start of the season

2011-11-10T07:26:00.000-05:00

This is a pitiful picture, a small glimpse of what Liam has been dealing with since Saturday. He caught what I thought was just my cold but he got a fever after the first day. Then his sinuses started clogging and because Liam is strictly a nose breather (unless he's in a deep sleep) his nights were horrible. He would try to breath though his nose, not get any air, then grit his teeth, and try to inhale even harder. It's a horrible sensation watching your child try to breath and can't. I admit I was a bit irritated at God for not giving Liam the obvious choice of breathing through his mouth!

Yesterday morning I woke up to this:

His mouth is so dry that his lips cracked in several places and he has blood all over his teeth and lips. His skin is so shiny because it is caked in vaseline and vapor rub.

Let's hope this isn't a precursor of the season to come.

Here's to starting the cold/flu season off in grand style, my little man!

IEP 2011

2011-11-09T08:27:00.000-05:00

The dreaded 3 letters in a special needs school year, IEP (individualized education plan), took place for Liam last week. They are typically awful for parents because the school tries to put in perspective the child's disabilities, abilities, how they can best work with your child, and what they think our child needs. Usually it falls short of the parent's expectations and can be heart wrenching seeing on paper what they think your child is or is not capable of doing..

Liam's went pretty well, considering. We get the descriptive moniker of multiply disabled which helps encompass the fact that Liam is blind, has cp, and can't communicate well because of his motor limits and vision issues. We luck out that Liam's birthday falls in Nov. He will only be 4 in two weeks. It means he gets an extra year of preschool at home before starting kindergarten so we didn't have to work in to this years IEP preparation for kindergarten. He'll be going on 6 before he actually gets there.

This year we had some changes at the beginning of the year; a new preschool teacher and a new occupational therapist. I'm not one for change when it comes to Liam because it takes such a long time to get to know him. But we lucked out with our preschool teacher this year. She's amazing. She is energetic, not afraid of trying to get 'inside' Liam and she is always figuring out what to do to best achieve goals for Liam.

At the IEP you have to have everyone involved with Liam's services there. So we had:

occupational therapist
physical therapist
speech language pathologist
preschool teacher
vision teacher

The parent has to agree with the IEP. If you don't you can voice your concerns, what you would like to see, or what you think needs to be done different.

They decided that Liam should have extra services this year which is a great thing because it means he is 'doing things'*. They have upped his preschool time and upped his speech by an additional hour each week. I love it because whatever it takes to get to Liam I'm willing to do. And because it means he's doing things worthy of more education.

*Liam nailed his colors two weeks in a row. I told them a while back that he knows them but he has to prove it to them in order for it to be documented on his goals.

All Hallow's Eve

2011-11-05T20:18:00.001-04:00

A little late but: Happy Halloween!

Checking out his costume in the mirror.

He's the itsy bitsy spider!

How we have to get him down the stairs in his chair: backwards! But he loves the bumpy ride.

The verdict.

2011-10-27T13:36:00.000-04:00

So, it's in...

The answer was no. And I'm flat out stupefied.

-We have the money.

-Liam is "obese".

But they want him older & bigger (yet they can't quantify bigger).

I told them they should probably tell parents in advance that they won't do children under five (unless they look like a sumo wrestler) so we don't get our hopes up and raise the money only to be told we need to wait some more.

And I should probably go listen to my pastor's sermon on when God opens the door but won't allow you to walk through it. Because none of this makes any sense to me right now and I'm especially irritated at this all.

Not what I thought I'd hear.

2011-10-24T08:24:00.000-04:00

Dear Jennifer,

Thank you for the latest photos of Liam and the information.

I am sorry to give you the information that at this time, the doctors
feel he is still too young and small to undergo the procedures.
They prefer to have the child be about 5 for either the bone marrow or
adipose. However, they will reconsider in about a year's time.

Please do not be discouraged or give up. Your son is very blessed to have you.

Kindly,
R

This was my reply back:

Dear R. and Doctors,

I have received your email regarding Liam and that I should wait another year to come however, I respectfully ask you to reconsider. I feel some insight into Liam might help.

I never thought stem cells were a possibility for Liam because of the extraordinary cost. Even so, we prayed about it and researched it and that led us to you.

We were adamant about not trying HBOT but saw God do a 180 on us when we encountered Bob on an HBOT board. Little did I know that he ran that board. I had just joined in order to get some more information, decided against it (sounded like snake oil), then both my husband and myself changed our mind in an instant (separate from each other) after reading something Bob had written.

In thinking that stem cells were out of our possibilities, but knowing how God had made 80 dives of HBOT happen (we had those paid for completely by friends) I decided to see if going forward with the idea of stem cells could be made possible. We had no extra money and no chances of any coming in. But God made the impossible possible. He allowed the monies needed to pour in and we raised what we thought we never could in a few months time. We now have everyone's money, sitting here, with everyone anxious for Liam to get stem cells. The first obstacle had been accomplished! The second would be Liam's weight. I have watched my son go from failure to thrive to "obese" in only a 6 month time frame. The largest hurdle of all, getting fat on Liam, has happened. God has allowed the money and the weight to pour in. We have been so very blessed!

You state that we should wait another year until he is 5 so he is older and bigger. I can understand your age requirements. Yet if in waiting for him to be 5 is because he is only 4, I can state that he is the size of a 5 year old already. He actually wears size 5 clothing in fact! I tell you he is not a small child.

Also, because Liam has low muscle tone, he is unable to hold his head up well. That means he is in his chair or on the floor at home at all times. He can not sit independently. Traveling with him as he gets older, will undoubtedly be extremely difficult because airlines are not able to accommodate a person who needs to be in their wheelchair while in flight. While Liam is younger it will be much easier to fly with him as he will still be able to use an insert in the airplane seat to allow him to fly. As he gets older, that insert will be too small for him to use and I'm not sure how we could even be able to fly at that point.

I understand if you still do not want us to come. It is after all in God's hands entirely and if that is the decision He's made I'll just have to figure out what's going on around here and accept it! =) I just felt I needed to respectfully disagree with your decision due to Liam being the size of a 5 year old already and the way God has paved the way for us to come. I don't believe in accidents and the journey he has brought us through has led us to where we are now.

Thank you for hearing me out one last time.
Jennifer

Well, that was my reply in it's totality.

And now I wait.

2011-10-17T08:48:00.000-04:00

I applied for Liam to get stem cell therapy last March but he was denied because he was too skinny. I asked how fat they needed him and they couldn't give me a number for weight gain. I was just told that he needed to grow more and be able to have extra fat taken from his belly for the procedure.

This summer is when I started adding the coconut oil and the Duocal to his diet. I needed to get extra calories without extra volume and apparently it's worked really well. At Liam's GI appointment this week he was officially labeled as obese. This new label cracks me up because while he has some chub, he is no where near what I would ever consider to be obese.

Liam's weight went from the 5th percentile to the 75th.
His height went from the 10th to the 25th.

But the marker that gives him the obese label is his height to weight ratio. It went from the 5th percentile to the 90th. He's grown well in weight but he's still short so his BMI is a whopping 17.44.

I'm so proud.

He has officially traded one label for another. FTT (failure to thrive) for obese.

I've reapplied for stem cell treatment with the hopes we can go soon. They need to be able to take 70-100 ml of fat. About 5 ml is equal to a teaspoon so they need at least 15 teaspoons. That sounds like a lot to have to find on Liam's belly even with his obese label.

According to the GI Liam needs to be restricted in his calorie intake at this point. In other words he needs to go on a diet. He is currently gaining 27 grams a day and should only be gaining 7. I'm fully on board with that. He is heavy and lifting him is hard. But there was no way to do adipose treatment without getting this weight on first. Luckily our GI is on board with what we are doing and is excited for us. I'm to report back to her once we've gone so we can establish a new diet. All I need to do is take out the oil and duocal and we'll be good to go but they like to keep a close eye on him.

So...

Let's hope that a BMI of 17.44 is enough for him to go!

Sweet Sixteen

2011-10-12T13:52:00.001-04:00

Being Irish (my dad is half Irish half German) I have always been in love with Ireland. When Rylie was young we talked a lot about going there someday, she is in love with it too. Then I got this brilliant idea! I told her we could do one of two things when she turned 16. We could get her a car or we could take her on a trip to Ireland, which one would she prefer?

Rylie turned 16 in September and even though it's something we have talked about doing since she was 7, she was still surprised to find the tickets as a gift. After having Liam all life went on hold and our finances got mangled in the housing crisis and our family crisis, something we haven't been shy about sharing with our kids. Luckily I had been saving since Rylie was 7 and the money had remained relatively untouched. I started with only 20 bucks a month and would gradually increase it when I could.

But after Liam came along I wondered if it would really happen. He is total care. And it takes someone intimate with him to care for him. I'm so thankful to my mom for moving in for the 2 weeks we were gone and allowing us to go on this trip. It's not like it's a stretch for her to step in and help out (I can always turn to her if I need it), but two weeks is a long time (she had no aid service while I was away and that's another post) and we couldn't have done it with out her.

After going on this trip I have really felt for the families of kids with special needs who don't have anyone to step in and help them out. I know how hard it is to get away at all let alone for two weeks.

We had an incredibly good time in Ireland. I miss it everyday. We were able to give Rylie an amazing trip, one I hope she will remember forever.

The miles seem so small this way.

2011-10-05T16:37:00.000-04:00

The only way I've been able to see or talk to Liam (and my other two) for the last 2 weeks has been by skype. Shawn and I are currently in Ireland with our oldest, Rylie.

He had fun talking to us on the computer. We sang to him, had him wave to us and had him giving Mimi high fives for us.

We get home late tomorrow night and I can't wait to squeeze the little man.

Politics and Stem Cells

2011-09-28T02:37:00.000-04:00

Using adult stem cells from you own body is safe and harmless.

A recent article on what they mean in the political scheme this year:

“Protean”, from the shape-shifting god of Greek mythology, is a well-worn
adjective for describing the potential of stem cells. It works equally
well as a description of politics of stem cells, at least in the US.
After George Bush, Texan become President, restricted the use of human
embryonic stem cells, many scientist bitterly criticised him – and the
Republic Party – for closing the door on the most promising development
in medicine for decades. In the hyperventilated language of a 2003
article in the New England Journal of Medicine, “the Promethean prospect
of eternal regeneration awaits us”.

Now a Republican Texan would-be President, Rick Perry, is under fire, it
seems for taking these dreams seriously. Stanley Jones, a Houston
surgeon, in July, injected Mr Perry’s own stem cells to treat his ailing
back. As well, Mr Perry is directing millions of dollars into adult stem
cell research, which he sees as a potential boost to the Texas economy
and an alternative to embryonic stem cells. "It is my hope that Texas
will become the world's leader in the research and use of adult stem
cells," he has written. "With the right policies in place, we can lead
the nation in advancing adult-stem-cell research that will treat
diseases, cure cancers and, ultimately, save lives."

This sounds remarkably similar to remarks made by President Obama when he
loosened his predecessor’s restrictions: “these tiny cells may have the
potential to help us understand, and possibly cure, some of our most
devastating diseases and conditions”.

How has the scientific community responded? Judging from an investigative
feature in Nature, with great hostility. “We must protect patients from
risky treatments advanced by overzealous, even greedy, entrepreneurs,"
wrote Bettie Sue Masters, of the University of Texas Health Science
Center in San Antonio. The Food and Drug Administration is cracking down
on doctors spruiking stem cell treatments. "If Perry was treated in the
United States, it was clearly in violation" of FDA regulations, a former
FDA official told Nature.

Such is the Protean nature of politics. Once again stem cells are shaping
up to be a key theme in a presidential campaign. But this time will the
Republicans be selling hope, and the Democrats sour scepticism and
high-minded ethical reservations? The 2012 campaign will be an
interesting showdown for bioethics as well. ~ Nature, Sept 20

Never know

2011-09-24T12:45:00.017-04:00

This is Liam's first experience being around a baby.

I have always wondered what it would have been like if we had gone on to have another baby following Liam. I wonder if having someone his size around would have helped to spur him on. Or whether it would have just been a constant reminder of a path his life could have taken but didn't.

In either case, we'll never know. Shawn and I just couldn't bear the pain of trying and losing again. And we didn't feel we could put our kids through it either.

Things change

2011-09-20T07:59:00.000-04:00

We've had a change up of educators/therapists this year for Liam. The new school year started off with a bang with Irene barreling through. It delayed for a week us getting any services. We are just now this week settling into a regular routine.

Liam has a new occupational therapist and a new itinerant preschool teacher. I think both of them are going to be a great fit. Liam had his first sessions with both of them this week and he did so good. I was so proud of him. It's so hard for him to use his arms yet he was hitting his switches and buttons just like they asked.And he was exhibiting more control doing it than I've ever seen.

I'm hoping a for a great year for him. We got off to a very slow start last year because Liam didn't even start receiving services until December. We felt like we were finally diving in when the school year ended and we stopped receiving all services.

So, lift up your glass with me and toast to a new year full of new ideas and possibilities for Liam. I know we are both ready!

Moving on

2011-09-15T23:38:00.000-04:00

After two years of aids/CNA's, we just lost number 6. Not that I am sad to see her go. She was a 'nice' woman but she wasn't a good fit for Liam.

We started with R back in May. She had a small fear of dogs and even though we have three, she never let it bother her. One day we put Bandit, our largest at 50 lbs and loudest barker, in our laundry room because she was still fairly new and he would bark at her pretty loudly for the first few minutes of her arrival. She went to the door to the laundry room and taunted him through the glass. She made faces, would pretend to open the door, and all the while he was cornered in the room barking and growling for fear of his life. What do you think that did to our already skittish dog? He never grew fond of her after that.

R never really talked to Liam either. I knew she was quiet and would encourage her to talk to Liam about what he was watching or engage him in any type of communication. She just never did. I always felt bad for Liam, like he was alone in the room even though there was a body there.

This week, when R got here she said she needed to talk to me about Bandit. Apparently the day before when I had left before she did, Ian helped her finish up with Liam in his stander and Bandit barked at her. She accused Ian of not shutting him up until she was out the door. She said her nerves were shot and we needed to do something about him.

I understand her fear of the dog. But she has been working for us for 5 months and has never said a word. I reminded her that Bandit has never forgotten being cornered and taunted by her that day and that he doesn't bite. He just barks his discontent with her presence in his home. =)

That day she left Liam lying on my living room floor and walked out the door with out telling me she was going.

Ian happened to be walking through the house and saw her as she was going out the door.

The next day the manager called and said she quit. She said she just couldn't handle the dog, after 5 months working here and not one word until this week about it.

But, I'm not sad. It's a good thing. She wasn't a good fit but we stuck with her because we have an aid for such a small amount of time in the week. It wasn't the right person but I just dealt with it.

Please say a prayer that we get someone good in here for Liam. I see so many great people who interact so well with him but it seems like all we ever get is duds for in the home.

Blog hits

2011-09-14T20:41:00.000-04:00

I'm really bummed. I just realized my counter (page views) is missing from the blog. I have no idea where it went. The java script for it is just missing from my layout. I loved seeing how many times someone has clicked on Liam's story and now it's all gone. We were up over 35,000 the last time I checked. Granted that's small stuff for the world wide web. But that was big time stuff for me.

I have the urge to add one again but feel like it's futile at this point. We have to start over again at zero.

Yes, I'm feeling sad about my missing counter.

No, it isn't silly to me.

It is nice to know that Liam's story is still being read even though it's still being written.

2011-09-14T11:19:00.001-04:00

Working on upper body strength and separation of movement today. Estim is on his lats and rhomboids to help facillitate reaching for the iPad. Our new goals are combining PT, OT, and speech into the same goal of utilization of the ipad for communication.

Hurricane Irene you were mean.

2011-09-07T07:30:00.000-04:00

Blue sky disappeared the day before she hit.

We experienced our first hurricane on August 27th when Irene came barreling through. She made landfall as just a category 1 but after 24 hours of hovering over the outer banks of NC she destroyed homes, toppled thousands of trees, and sent insurance adjusters scrambling to handle all the claims.

Our office ceiling had water leak through the sheet rock seems and the nail holes.

We lost a few shingles on our roof and have a lot ripped loose but hanging all cockeyed. Our insurance company sent an adjuster out who said we qualify to get a new roof put on, new sheet rock ceilings in the office and kitchen and to have our hard wood floors sanded and refinished due to all the water damage.

Our driveway is barely visible.

There shouldn't be trees that close to that garage back there.

The kids could roam the street at lulls in the storm. It was the only way to travel because trees had toppled over every road allowing no access to anywhere.

A few houses down and the domino effect had house after house with huge trees on the lines blocking power to everyone.

We lost power right after the storm hit. We figured it would be back soon but when Irene just hung over us for 24 long hours, the trees couldn't take those sustained winds for that long and just started to topple taking down lines everywhere.

We got power back ofter three days. It's amazing we got it back so soon because so many were without and the damage was so significant. But the power companies, ahead of the storm, brought in crews to get everyone back up as soon as possible.

Liam cant stand the heat and going those nights without it was restless for him. Luckily Irene sucked all the humidity out with her so it was tolerable, but not enjoyable.

Loose, broken and tangled wires were everywhere.

People with chainsaws would show up and trim just a bit off the trees in order to make a small clear path. Many roads remained one lane for days.

Ian's tree fort was destroyed when the tree he built it in fell.

Three trees came down just to the edge of the garage and over our hauler trailer. Luckily they didn't have any damage.

We decided pool season was over after Irene came through. The storm sucked the cover off and buried it at the bottom of the pool with huge branches and leaves over it.

Ian and Shawn spent an entire day just chopping the water soaked wood from our tree that fell over onto our neighbors property, blocking him in.

Huge branches are hauled off to the front of the property where someday crews will come and pick it up. They have a huge job ahead with hardly a house to spare that doesn't have large debris sitting along side the road.

We also lost phone, cable and internet for a whole week. After much convincing to our cable company that it wasn't just us and a single problem with our home, they started searching the claims and saw that they were many of us out in our area. The numerous trees in a row a few doors down were what had damaged our lines.

Life is back to normal for us. We still have more clean up and at some point the repairs need to be made, but we were fortunate the water table was low and flooding in our area was not a problem. A lot of people have been displaced.

From living in the midwest, to the west coast, and now on the east coast, we have been through tornadoes, earthquakes, and now a hurricane. This is the first experience to damage our home. But I'm not sure which one I prefer.

2011-09-02T07:03:00.001-04:00

Good thing Liam likes being cold when he sleeps. His tubing popped out somehow and this is how I found him this morning. Laying in 10 oz of cold formula didn't even wake him up.

Wounded warriors

2011-08-19T20:27:00.002-04:00

These are all the spoons we've used to get Liam to eat. Regular spoons...therapy spoons. And all of the poor things have wounds from the battle.

Caption That Photo

2011-08-18T15:08:00.000-04:00

Sigh.

The things we do around here.

Pudgie

2011-08-11T09:15:00.000-04:00

I've had Liam on this high calorie diet for almost 2 months now. We need him with some chub in order for them to take his adipose tissue (the chubness) and extract his own stem cells from it. They will then infuse the cells back into his body (after they clean them, activate them, and insert them into a solution) through an IV.

I started him on coconut oil in the hopes that the good, high, naturally occurring saturated fat would increase his intake enough to finally put some weight on him. I knew he was getting heavier but I needed to know what weight he was at and try to figure out where I wanted him to get to. So, I ran him in for a weight check this week.

Drumroll please......

His weight in April: 26 lbs 13 oz.

This week: 33 lbs 4 oz.

His pediatrician couldn't believe it. Her jaw was on the floor. This boy has been meandering along on his own growth chart, barely making it on and after all this time, only two months in to using coconut oil, and he's jumped up 6 lbs!

He's moved from the 5th percentile to the 60th!

The pudge hanging over his jeans. ; )


How skinny he was when I started.

It's crazy! And such a blessing! God has been so good that even though he's throwing up every day, he's been able to put on the weight that we desperately need!

No more ribs sticking out.

SAID

RAWR!

I'm hoping for a couple more months of weight gain to make sure he's good and chubby and then my prayer is, God willing, that they will say he's fat enough for a treatment!

What if?

2011-08-06T21:06:00.002-04:00

God's gifts put man's best dreams to shame.

Elizabeth Barrett Browning

We only remember 10% of our dreams and I think I remember even less than that. I had a dream yesterday morning that I could remember. I'm usually very pressed to remember them and typically I am able to hold on to only very small glimpses of one. But this one was different.

We were at church with a very large assemble of people. It seemed to be mostly teenagers and women. I had been there for some time but I was in the lobby, talking and looking into the auditorium from there. Various activities had taken place on stage and a woman was up there getting everyone excited. I walked in to see what the excitement was about and to take a seat. As I was walking through the crowds the girl mentioned something about people who inspire you. I tried to get out of there but the crowd started cheering and the throngs of people pushed me toward the stage. They asked me to come up.

When I get to the front I look out and see that the room is packed. The aisles are full and the crowd is cheering...at me.

When it quiets down I start to speak. But it's supposed to be about inspiration, inspiring people, and I'm not inspiring at all. I'm just a mom. I'm nothing special, and I've never done anything special. Yet the people seem excited to talk to me.

Just then one of the girls in the audience raises her hand and yells, "How does it feel to know you are an inspiration to so many and that so many people look up to you?" I laughed loudly because I had no idea what she was talking about. But then she goes on to ask how I feel about so many people reading my blog.

I'm just stunned at that point and I tell her that I never set out to be an inspiration to anyone. I only started a blog for my own personal enjoyment. It was never meant to be read by anyone other than me. I never intended for any of 'this' to happen.

And then I woke up.

I've thought about the dream, wondering if it means anything at all. Most likely it does not. But then again, what if?

I think about Liam and how little he was when he was born, how abortions are still performed at that gestational age of 23 weeks. And I think that if anyone could change their mind about 'women's choice' because of our story then that would be inspiring.

I think about Liam's disabilities and how I never thought I could do any of this. And I hope that somehow that's inspiring.

I think about my children and how much have learned by having Liam as their brother. They have learned compassion, acceptance, empathy, mercy, and delight. If they can ever pass those on because of the experiences through which they've learned them, then somehow that is inspiring.

I hope Liam, in all of his failures and triumphs, shows that life is a blessing, a precious gift, a miracle to be cherished. And that it is inspiring.

But most of all, what if someone could see Christ in us and through us because of our experiences? Could they come to know Him better? Could they see through my darkness, my failures and see him more clearly? Because I have always felt inadequate, ill-equipped, and unworthy of the challenges put before me over these past few years. I feel like I flounder and have no idea what I am doing. And if I could inspire even one person, that if I could do this through my faith in Christ, then surely they could too, well...that would be inspiring.

Vital stim

2011-08-02T08:13:00.001-04:00

We got some really bad advice about Liam following his g-tube placement. An OT out of Raleigh specializing in vision impaired kids told us not to feed him orally at all for at least two weeks after the surgery. Her thinking was that we would be able to then slowly reintroduce food and make it fun with the result of Liam choosing to eat because he wanted to and not because he had to.

Why was that bad advice? Because it didn't take into account Liam's oral sensitivity and poor oral motor skills. Liam isn't just vision impaired, he has cerebral palsy. So when we didn't feed him for those two weeks, when we went back to it, he didn't want to have anything to do with it.

That's also when his drooling started. Once he quit using his mouth to eat he started to drool. Eww.

It's so frustrating because he was eating ok. Not great, but ok. And he didn't drool!!

Our private OT thought Liam might benefit from trying vital stim on his face to help him get back into the swing of things again. We contacted the only one she knew of in a town 45 minutes away connected to a hospital. I'm always willing to give things a try even if it's a pain to get it done. I had to get them some paperwork and when I called the pediatrician, they called my home health agency and they called me back wanting to know what I was needing. When I explained it they said they had someone there who could do that. In my home. Who had experience on kids (this is a commonly used practice on adults who have been brain injured).

I do love it when things work out so well. Because that is not the norm around here.

We had our first appointment this week. Can I just say first that Liam loves attention? Loves it. He was so excited to have someone new in the house just to see him. It cracks me up how excited he gets.

We didn't do the stimulation at this visit. It was a meet and greet kinda thing with emphasis being placed on me doing a lot more orally desensitizing through the day than what I currently do. The reason I don't do more is because I am afraid he'll throw up and I need all those calories in him right now. Seriously, this kid can throw up just by having a toothbrush touch his top lip. Not even in the mouth or brushing, just the touch. Ugh, but I guess I have to start somewhere. So I'm going to pencil oral activity into the schedule and hope we can get him on the right track.

He did have a show off time of it yesterday. She asked me how he would do with peanut butter and I figured it would be a vomit inducing food for sure. I gave him some peanut butter mixed with dark chocolate and he 'seemed' to enjoy it. I;m hoping it was the chocolate part. Cuz I'd be willing to share my stash with him if it is.

Honor

2011-07-21T12:53:00.002-04:00

It's not that I have ever forgotten my children who are being raised by Jesus, it's that visiting the cemetery is painful and even though it has gotten easier to go, it's still hard. I'm a wimp.

So, thank you to whomever you are that has visited in my stead.

I arrived yesterday ashamed to see the flowers I had put a year ago worn out and faded with time. Ashamed that I hadn't been back to take care of the dirt and grass growing in between the stones.
Ashamed that dead grass was covering up parts of the stones.

But how honored I was to see that someone had put an angel figurine on Kyle Ann's marker (we didn't get the option to put a desig/figure on her marker but did with Brady...Brady's has two angels attached in honor of both of the boys.). And someone had put a planter of flowers between them both. Thank you for remembering my children. I promise I haven't forgotten them. Even though visiting there it looked like I had.

Waiting

2011-07-19T09:43:00.002-04:00

How do you get a kid with cerebral palsy to gain weight when he throws up every day?

There should be a punch line in there somewhere.

When I asked for prayer a few posts back we got some doors closed to us immediately.

The XCell Center in Germany is currently closed. I don't know if it will reopen.
Bangkok charges $10,000 (that doesn't include the travel and hotel expenses).
Beike in China is just out of the question with it's cost, they charge a minimum of $30,000. But you have more than one treatment and acupuncture is included! =)
Medra uses fetal cells from the aborted babies brains. That just makes me sick to my stomach.
Monterrey, Mexico has travel warnings out because the violence, although I hear it is a nice modern city.
The Dominican Republic says Liam is too skinny.
Panama said no because he's a former micropreemie. (stupid logic)

So? What to do?

Shawn really feels most comfortable with DR. I'm fine with that. I know a few of the people involved in getting the stem cells started there and I have talked to people who have gone. The Dr. who runs it is a missionary homeschooling his kids with one of them with special needs. He has made this a possibility for parents to help their kids without charging a fortune. It is completely safe.

I just don't want to wait on fattening up a kid that moves constantly all day long and has cerebral palsy. I'm getting impatient! Especially since we have now raised all of the $8000 that I was hoping to raise! I promised not to say who, but some incredible, amazing, loving, god-fearing, inspiring people gave Liam a check for the remaining balance we needed to raise: $4000!

I am overwhelmed by the love shown to us and to Liam. How can we ever thank these people enough for what they have done?! Saying I'm blown away is not an over reaction in any way. I think about it daily and am just awestruck and so very grateful. And not just because of the money but because I'm just grateful to know them.

Now that we have the money (for Monterrey or DR), in order to get to DR we have to gain weight. They need to be able to pull 100 cc's of fat from his belly. Kids like Liam don't gain weight well. Then throw in the throwing up and you have yourself a maelstrom. Liam is a mess.

I do have a few more places that I am looking into but for now, I'm working on giving Liam nutrient thick, high density fats in order to get some extra weight on him. I'm mixing avocados with coconut oil, almond butter and formula. I don't even know the real fat content of this mixture. Just that it is high. And it's the good fats too. Hopefully we can get some fat in this kid. For now he just keeps getting longer and I just need him fat.

It's summer.

2011-07-14T00:02:00.000-04:00

We've been having a laid back summer so far when it concerns therapy. We have only been to two private sessions since school got out and of course we don't get any from the school system during the summer break. It's nice to have the time off and we have been very busy but it's also really nice to have that consistent schedule like we used to.

We decided to head to the Highland Games outside Blowing Rock, NC this past weekend (both Shawn and I are Gaelic in ancestry). The area is gorgeous and the weather was wonderful with no humidity. And the elevation had us in the clouds at times giving us a nice Highland feel. It's not too far from where I took Liam for his oxygen treatments and there's just something about being in the mountains that makes me feel at home there.

We rented a cabin with friends and got to enjoy four days out in the middle of nowhere. We were literally in the boonies. The only way to get to the cabin was by a narrow gravel road than ran for a few miles back into and around the mountains.

Liberty Hill

Only 2 bedrooms but what a view!

Liam had a pretty good time. Other than vomiting repeatedly, he did great on the trip. His vomiting has flared up something awful and even though our friends have seen him throw up numerous times here at our house, it's never been like this before. I felt bad for them having to be there with all of that mess to deal with. It's a lot for me and he's my son, let alone our friends having to put up with it. Luckily they are awesome and just roll with it like we do. But I still feel bad and frustrated by the situation. By the end of the weekend he had thrown up more than he kept down during the day. And he wasn't sick.

The highlight for Liam was listening to the music at the games. They had a great Scottish band that played the bagpipes with lots of drums. That always got a big smile out of him when they played.

We all had a really good time too. We got to try haggis (leaves an after taste), haggis flavored potato chips, chicken pasties, bread pudding, and watch caber tossing, stone throwing and bagpipe competitions. There were so many that you couldn't go anywhere in the park without hearing bagpipes playing somewhere. We even would hear them went we weren't at the Highland Games that's how prominent they were.

My two awesome girls.

A rare photo of the two of us!

This was our first Highland Games event. We've been to Scottish festivals before but this was something completely different. Lots to do and see... and men in kilts. Boys in kilts. Women in plaid. Babies in kilts. Everywhere you looked you saw plaid. It was a really neat experience to see all those plaids and know they each represented a family line that could be traced back hundreds of years. And to realize the importance of the Scots getting to wear them in freedom.

I hope we get to go again sometime.

A victory for our children in NC

2011-07-02T09:34:00.000-04:00

History was made for thousands of children across North Carolina on Friday when House Bill 344 (Tax Credits for Children with Disabilities) officially became law!

Gov. Perdue released a final list of bills under her consideration this afternoon, which included a statement saying that she will let the measure become law without her signature. This means the bill will become law at midnight.

This is the first piece of K-12 legislation in NC that gives parents statewide school choice where private education is an option. The measure allows parents of special needs children to claim a tax credit of up to $6,000 for educational expenses that include private school tuition, therapy and tutoring. With this bill, parents can better afford placing their disabled child in an educational environment that best meets their needs!

Thank you Gov. Perdue for not vetoing the measure, which became law behind strong legislative and public support!

This video featuring parents and children who would benefit from the measure. along with calls of support to Perdue helped make it happen.

“Allowing all of our children to receive a good, sound education in North Carolina means having them learn in the educational environment that best meets their needs. This will now be possible for thousands more of our children.”

Nearly 200,000 K-12 students in North Carolina public schools are estimated to be receiving special education and other related services each school year. This costs the state $8,160 and school districts $1,931 per student. It is estimated that up to five percent of qualified students will take advantage of the tax credit, which would annually save taxpayers up to $10 million and school districts up to $4 million per year within the next five years. This savings will be placed in a fund for special needs programs in public schools.

Programs similar to House Bill 344 exist in Arizona, Florida, Georgia, Louisiana, Ohio, Oklahoma and Utah.

“Now we can add North Carolina to the list of states that are going above and beyond by embracing the ideals of real parental school choice for families,” Allison said. “This piece of legislation lays the foundation for similar options in the future for our students.”

Now, if we could just get self directed care for our in home aid services, we could cut the budget even more. I became aware this past week that for about 5 years now they have allowed self directed care for adults with disabilities while the children still remain in the antiquated system of buearocratic red tape.

Secrets

2011-07-01T08:04:00.000-04:00

How does my little guy, with no ability to roll and two arms that stay out and up, find the two stuffed animals on my bed and get them on top of him?

I left him on my bed and came back to find him with both of his favorite stuffed animals laying on top of him.

Liam smiling.

And the glow bear turned on.

I think the animals are alive.

Or Liam has some serious skills he's hiding.

XCell Center is currently shut down

2011-06-29T18:51:00.000-04:00

Well, I guess this door is closed as an option. Even though it wasn't at the top of our list for taking Liam due to cost, it was still on the list.

Inquiry Form
Dear Sir or Madam,

as you may have noticed, Cologne-based XCell-Center GmbH with branches in Cologne and Duesseldorf filed for insolvency. As of 24.05.2011 I have been appointed as a preliminary insolvency administrator by the court having jurisdiction.

At the moment, business operations have been shut down, as the competent german advisory authority has denied further authorization for stem cell transplantation.
The insolvency proceedings will probably open in August 2011. Every creditor will get an invitation to lodge a claim and further information by our office.

I kindly ask for your understanding, that - due to the german insolvency law - it is not possible to lodge a claim before.

CONTACT INFORMATIONS:

XCell-Center GmbH 
Im Institut fur Regenerative Medizin c/o Eduardus Krankenhaus
Manager XCell-Center
Hans Wolfgang Happe
Custodisstr. 3-17 
D-50679 Koln 
Germany
whappe@xcell-center.com
Mobile.: +49 177 4 11 02 54

post signature

Decisions, Decisions

2011-06-27T22:14:00.000-04:00

We have some decisions weighing heavy on us right now that we could use prayer for. I am going to be one of those people that ask if you could say a prayer for us but not give you all the details about it for now. God knows though. And we would sincerely appreciate your prayers.

We specifically ask for clear direction, clearly closed doors, and wide open windows as we seek God's wisdom.

And as always, healing for Liam.

Amen.

Scars

2011-06-16T22:40:00.001-04:00

We all have scars. Some we carry quite obviously, from an accident, an injury. Some are internal and not so apparent. Traces of them visible but not noticed without attention being called. Some blend in so well no one would ever know it was there.

Liam has scars.

He has a large scar running along the bottom of his left scapula. The wound from a surgery to correct a duct that didn't know to close at 23 weeks gestation in order for Liam to get enough oxygen (even his duct knew it was way too soon).

He also has small scars. Lots of tiny pin pricks all over his body. One from his PICC line in his left arm, his arterial line in his right, little white spots on his legs, hands, and feet from the IV's. Pricks on his heels when his art line went out. I can see every one. They aren't noticeable to anyone but me.

He also has internal scars. Ones I can't see, but I know are there. Scars with a lasting affect of trouble. He has a large portion of his cerebellum missing. He has a thin corpus collosum. He has had laser beams scar his retinas in order to prevent losing them due to his prematurity. He has scars of trouble from sensory issues involving his mouth and his tummy.

I have a lot of scars as well. Most of them no one can see. Wounds grevious yet assuaged with the passage of time. Only obvious to me.

But, one scar I wished was on the outside.

One scar I wanted to never fade..

I wanted a permanent marker for this scar. An identifier.

But in fear of the passage of time allowing my wounds to fade from my existence, I wanted to make a mark that would never fade, that would always remind me. I wanted a tangible one. One I could touch and be transported. An indellible reminder. One that would never disappear.

God said to Zion: "Behold, I have engraved you on the palms of my hands." Isiah 49:16

I wanted my missing children to be engraved upon my hands as well. And so I thought about what I would have that scar illustrate if I did. What I would have it represent to me. What it would mean to be there and to see everyday. But I didn't just want my missing children to be honored, I wanted to signify all of them and each ones importance to me.

So, I decided for it to simply say:

"Mom of six"
in Irish Gaelic.

They have now in their own way been engraved upon my wrist. An outward symbol of an internal scar, one that can never be forgotten.

While being a Christian and receiving a tattoo can be questioned by some and while impressions, stigma's and misrepresentations can occur because of having one, it illustrates for me the reality of engraving my children upon my wrists as the Lord did with Zion. While they are not here with me physically, they are here with me in the Lord's promise that they are not forgotten.

Limitless

2011-06-14T09:47:00.000-04:00

We are finally, officially at the halfway mark for the goal set to take Liam for stem cells!

We hit $4,000!

Friends who had already donated before and have done other things behind the scenes that they didn't want credit for, donated again and got us to this goal! We have been so blessed by this couple and their faith, their generousness and their example.

We set the goal of $8,000 because the actual stem cells will cost $6,000 in advance. But then we have the plane tickets, hotel, and travel necessities for taking Liam. I am nervous about how it will work traveling with him. He has to have his own seat on the place even though he can't hold up his head (for takeoff and landing) and I know his car seat won't fit in it. We will have to take a stroller and the car seat. And then he's on a special diet so we will have to worry about getting his food there too. It's a lot to deal with and if ya'll knew how nervous this whole process makes me feel...well, it isn't something that is being taken lightly. But it is something that I have felt we need to do to help Liam. We've prayed about it and felt the Lord leading us in this direction. He's put people in our path with the experience, knowledge, and love of kids with special needs to prepare us for this step. Getting my mind wrapped around it and then getting me humbled to ask for help, putting generous, faith-filled, loving people in Liam's circle have all been important steps that God has taken care of along the way.

We are faithfully praying for the last half, the largest hurdle, to still be provided. And we are still praying for healing for Liam that only God can do.

Romans 8:28 And we know that God causes everything to work together for the good of those who love God and are called according to his purpose for them.

Matthew 4:24 And his fame went throughout all Syria: and they brought to him all sick people that were taken with divers diseases and torments, and those which were possessed with devils, and those which were lunatic, and those that had the palsy; and he healed them.

Psalm 33:22 May your limitless love be with us Lord as we put our faith in you.

Thank you to everyone who has helped out so far. From the big to the small, you all have played an integral part in getting Liam help and we appreciate you all.

Embryonic vs. Adult

2011-06-09T08:12:00.000-04:00

In a recent Pew Research poll, 56% of Americans said it is more important to conduct stem cell research that may lead to new medical cures than to avoid destroying human embryos during the research. But several ethical alternatives to embryonic stem cell research that hold great promise are available.

Here's a great article that talks more about the differences in stem cells. Embryonic is not the way to go and I'm disappointed that our federal government overturned the ban on embryonic research in April because it will focus federal dollars in that area when adult stem cells are the way to go both ethically and scientifically.

Fundraising 101

2011-06-07T23:06:00.000-04:00

We are still trying to raise the money to get Liam treatment for his CP. I swear this will be a curable disease someday! Just google TBI and stem cells. It's a fascinating field and one with so much promise! But because stem cell trials have not been established, regulated, and approved yet here in the US, we must take Liam out of the country if we are to try and help him while he is young.

Please know that I am so very grateful for everyone who has donated and I'm not trying to guilt trip anyone into helping Liam out. From the $10 donations to the hundreds, I say over and over that we can't do this with out you. And you all have been amazing. We've almost raised $4000, HALF of what we need to go!! I'm so impressed by your generosity and the tugging you've felt in your heart to give. I'm just so blessed and frankly thought that we wouldn't get as far as we have. God's sure shown me what a cynic I am.

In case any of you are wondering how we are going to come up with the rest, well...we are still fundraising! We have already sold flower bulbs, had an amazing volleyball tourney, and have sold almost all of the first shipment of tees (we only have a couple of large and x-large left). We've also had an incredible friend, Gregasauraus, bake goodies to sell at his work that helped to bring in several hundred dollars! And we've had various straight up donations to the blog.

I've been brainstorming trying to think what to do next and have a few ideas:

You can donate any gift cards you have lying around (no matter the balance) and we can auction them off here on the blog.
Find out if any business in your area would be willing to put a change jar up. Ask if you could take up a change collection at your church, sunday school class, small group, business, neighborhood, etc... Spare change goes a loooong way!
You can post Liam's blog link to your facebook page, your blog, your forehead, send it to all your famly, duct tape it on your car...anywhere it can get the word out. I've received donations from complete strangers; you have absolutely no idea when God will tug on someone's heart.
Donate your leftover paypal balance.
Have a garage sale, lemonade stand, Avon party, Pampered Chef party, etc... with a percentage or set amount to go to Liam.
Keep an eye our for a great raffle/giveaway on the blog in the next few weeks!

These are just a few suggestions that I've pondered...
If you've already donated, please know we are thankful. I love all of you. And if you haven't donated, please think about how you might be able to help in any way. And, if you don't, I still love ya all!

Just think how far we've come in the last 12 weeks: from zero to $4000!

We can do this!

Rigged

2011-06-03T14:26:00.000-04:00

Liam has a very hard time getting his arms under control. He has enough fortitude to get his arms down when it comes to his iPad, but for the most part it's a battle to get his arms down near the tray to play with any toys for any length of time.

Our vision teacher had been at a conference and saw some pictures of children in school with their arms 'tied' down. She asked them what was going on with those kids and why they were tied to their trays.

It turns out they were tied to the tray to keep their arms in place.

Hmmmm. She immediately thought of Liam.

So, with some panty hose and two holes drilled into his tray, we have:

A bit more stability.

And Liam's alliance with the Red Hat Society.

Joy comes in the mourning

2011-05-31T22:23:00.000-04:00

I have a friend whose son died last month after a seizure. Only 12 days before he would have turned 20 years old. So young. It was unexpected, a total, complete surprise. It was nothing they could have prepared for.

My friend lives in my old hometown and I had been praying that I would get a chance to see her when we went back there recently. I just wanted to give her a hug, for me or for her, I don't know. I just wanted to tell her in person how sorry I was.

I had been standing in the lobby of our old church talking with friends, waiting for the right moment to go into the church as it had already begun, when she walked out of the bathroom right in front of me. I looked at her, she looked at me and then we just hugged. We quietly cried in each others embrace and just let the tears flow. No words were needed. Just two mothers sharing tears of sadness over our losses, over each others losses. Two mothers whose arms ache to hug the ones we miss. Two mothers joined by a situation different, yet the same; we've lost a child too soon. She has memories to fall back on and miss the son she shared them with. I have no memories of times spent and miss the opportunities I should have had.

My friend had a large bundle of tissues at the ready in her purse. We dabbed at our tears and she asked me when it gets better.

I don't know.

I told her it does get easier.

It gets easier, but it never gets 'better'. You are never better than you were before. The loss of your child is forever with you. The slightest thought at the most random times can ignite a tidal wave of emotions that spill the tears when you least expect it. Just when you think you've shed your last tear, that you have gained the strength to move on without being emotional over the smallest thing, you are reminded through someone else's loss and yours become fresh and new again.

But we do have joy in these times.

Through our faith in Christ.

We know that God already knew how things were to be.

Psalm 139:16 All the days ordained for me were written in your book before one of them came to be.

I don't know how people who have no hope in Christ get through it. What a dismal, depressing thought that the only moments we ever have are here on earth and once you die it's all over. There is no point, no future, no hope without Christ.

It does make our sorrow easier to know that we will see them again. And while we have to learn to live this earthly life without them, we can have peace knowing our loss is heaven's gain and someday we will see them again.

How good was God to give me the opportunity I had asked for. I could have easily missed seeing her but He brought us face to face. So I could give her a hug.

Following through

2011-05-25T00:44:00.000-04:00

After my trip back to California, I really have set my mind to try and think differently.

I want to be more open to saying yes to the kids. I don't want to make excuses all the time. And I don't want to let life pass by because I was too bothered about the details, the time, and the nosey lookie loos when it comes to Liam.

So, I let Aidan play hookey from school Monday and we all went to the beach.

You have to remember that Liam is a kid that can't move his body. He is total care. So, taking him to the beach means packing up a chair for him to sit in (not just a fold up chair, we're talking a full support chair), using his stroller to get him there (which is NOT beach friendly and doesn't move through sand), taking a tent, g-tube food, etc... It's an ordeal. But it was so worth it!

We had such a great time.

The best part? The kids had such a great time. Even Liam. He loved watching the ocean flow in and out around his feet. He giggled and giggled until I thought he was going to throw up. Which is a great thing. It means he's happy.

Sorry for the candid shot there Mimi!

Skim boarding.

Big kids getting to act like little kids.

I will say that I am very thankful to have the handicap parking sticker on days like that because I am able to park right at the entrance to the walkway to the beach. That makes having to lug all of our stuff a bit easier since we didn't have to park in the normal spots that are a block away. And I can put Liam in the stroller* and wheel him out the boardwalk almost to the beach.

I learned a lot from the trip. It was our first real attempt to take Liam to the beach and I found out that it wasn't as big of a nuisance as I though it would be. And Liam didn't mind it one bit.

And I should say yes more often.

*I found out that it's much easier to pull the stroller backwards through the sand than to push it forwards. =)

I've been away!

2011-05-20T21:40:00.000-04:00

I got to do something recently that hasn't happened before...

I got a real vacation!

Shawn and I have been able to go away one time since Liam was born for a two night stay in the mountains with friends.

This time it was for 7 nights.

Oh em gee!

No seriously, this was a once in a lifetime chance to go. Shawn had a business trip to southern California, where we used to live. Shawn was taking Rylie because her bestest friend in the whole world lives there and she's flown out here to see Rylie several times. Now it was Rylie's turn. Because we were using Shawn's frequent flyer miles there were only certain days and times available, which meant that they were getting to go for 7 nights with the majority of time spent in our old hometown. Which meant I really wanted to go too.

Our old hometown. Our old friends. Trip paid for by work... When would this opportunity come up again? So, I was able to tag along on the work trip and have a real vacation for the first time ever.

It was weird to wake up and not be a mom for the day. Rylie was with Sabrina the entire time. So, it was just Shawn and I. I had to get out of mom mode first before I was able to start enjoying the vacation. I woke up the first day and didn't know what to do with myself. It was weird to have no kids and no responsibilities. Shawn was at work, Rylie was 3 hours away. Our other kids were at home with Mimi. But once I figured it out, we had the greatest time.

In front of Tijuana on the American side.

Lindstroms and Savards

Gregasaurus and his wife Terria

Me and Jackie. She's 82 years young.

Dawn, Me, Melissa, and Tiffany

We were able to see old friends, our old church and neighborhoods, and flashback to all of our fond memories of living in the area.

It was fun to remember what things used to be like. We have such great memories of CA from when the kids were little, before Liam was born (he was born after we moved here to NC). We used to go hiking, biking, to the beach, etc... all the time. It just isn't easy to do anymore. I miss having the carefree days, of just being able to get up and go, to plan spontaneous trips. But when I think to those days, there is no Liam in them. And so while I thoroughly enjoyed my trip and walk down memory lane, I came home with happiness in my heart for knowing Liam and the joys he has brought to our family, even with all the struggles.

It is futile to look back on how our life used to be. I do miss a lot of it. How could I not? Our lives are drastically different today. But one of the best things about this trip was the realization that I have to make the best of what I've been given while I can. The big kids get the shaft a lot because it's just easier to not do things (go to the beach, go biking, etc...) when I consider taking Liam along. While that isn't fair, it's just the truth. So, I want to make an effort to not let Liam's disabilities get in the way any more than absolutely necessary.

I wasn't sure what to expect coming out of a trip that long visiting a place in time that held such fond memories for our family. While some of us would go back there in a heartbeat, I am perfectly content right here where I am.`

Some of the most beautiful scenery on Earth

Rylie and Sabrina

Got reset

2011-05-09T13:16:00.000-04:00

Knowing Liam could go vomit free for months on end and having him back to doing it again everyday has been a nightmare. He's been throwing up everyday since we upped his volume intake for formula. Trying to get Liam to the right amount of calories has been causing him to throw some of them back in my face. What good is it to increase intake only to have the increase coming back out? Granted, more is staying in than out, but it's just been a pain having to shampoo the carpets weekly from all of the mess, not to mention the damage it does to his body, teeth and throat from it all.

When Liam got sick over 3 weeks ago he wasn't holding much down for days on end. His tummy quick working and so did his guts. It took him a week to get over it and once he was back to feeling well, I slowly started to increase his food to get back to his normal volume. I was excited to see that not only was he keeping everything down, he was able to take bolus feeds again like he did before we upped the food last fall. Cautiously I have been increasing his food and have been thrilled to see his body keeping everything down! He is just like he used to be last year!

I don't know the hows and whys of it but I'm thankful he got that virus. Being sick reset my kid!

The homestead cavalry

2011-05-04T08:44:00.001-04:00

What my living room looks like when we have the entire cavalry here working together and working on language:

PT is holding Liam, OT and SLP are in front and the preschool teacher is in back.

We are really working on getting Liam to learn to use his hands to talk. Because his range of motion and motor skills are so impacted we are just starting out with a picture of him playing with something and a blank card in order to 1) make sure he hits the right card 2) make sure he knows which card to hit 3) the card serves as his voice, he gets to do what is on the card when he hits it.

Liam did really well with it yesterday. He would hit the right card and then get to play with the toy. Our SLP is tough though. She would take it away after a few moments and he'd have to hit the card to get it back. It's a process to teach kids like Liam that they have a voice, and one that takes a lot of brainstorming and trial and error. We also use the ipad, but this is one way to know for sure that he is hitting the right picture and not doing it by accident.

Frowning around

2011-05-01T21:42:00.000-04:00

This is what happens when Liam is being emotional and we sing the night-night song in the middle of the day.

*I love Liam, I love Liam,

Yes I do. Yes I do.

You're my little baby.

Yes you are. Yes you are.

-Sung to the tune of Frère Jacques

He is the only one of my kids who can make a true frown like that. Unfortunately for him, when we see it, it makes us laugh and we sadistically keep it up for a while because we just can't help it.

Oh, don't judge.

It's just too darn cute! =D

*I have sung this song to Liam since he was in the NICU. We used to sing it to him to calm him when he was upset and it evolved into his bedtime song. We can sing it at other times of the day and he smiles and loves it, but when he's emotional, well, it just makes him very sad. =)

One to remember

2011-04-27T21:33:00.000-04:00

We had an eventful Easter this year.

A rarity: The whole family!

One of Ian's friends stayed the weekend with us. And after doing all the normal Easter things: dying eggs, church, baskets, lunch, etc... the boys and one of my girls (Shawn, Ian, Chase and Rylie) wanted to go dirt bike riding and 4-wheeling in the woods for a while. We delayed the Easter egg hunt until they got back. But, they never really got back.

Rylie smiled for me.

Ian and Chase not smiling for me.

Before the whoopsie in the woods.

Shawn had a minor accident in the woods, way back in the woods, and by the time we got the bikes out, him out and back to the house, the day was shot. And to top it all off, Shawn had to go to the ER because he had three good size gashes in his right knee that needed sewing up and he was pretty loopy. Actually, really loopy.

Checking out his basket.

Ewww. The ball is squishy and feels weird.

Liam's goofy grin.

Found all the eggs!

Oooh, Is that my basket?

After this photo and that grin, he smacked it off into the floor.

We only spent 2 1/2 hours at the ER. They stitched him up and told him to stay off of his leg for 3-5 days until the swelling went down. Aidan was pretty upset because she didn't get to have her egg hunt but we promised her we'd do it on Monday. Which we did. So it's all good. =)

Every year I post the comparison photos of Liam with his original basket that he could lay in his first Easter home. It's amazing to see how little he was and look at that basket knowing he fit inside it that first year.

Well, even after all the hoopla it was a pretty fun Easter. Memorable for sure.