21 July 2011


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.

19 July 2011


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.

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14 July 2011

It's summer.

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.

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02 July 2011

A victory for our children in NC

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.

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01 July 2011


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.

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