Make-A-Dream-Come-True

That is what Make-A-Wish should really be called, Make-A-Dream-Come-True, because they take a wish and turn it into your dream come true.

I was told years ago by a friend close to the Make-A-Wish organization that Liam qualified for a wish to be granted. I felt icky about applying because my experience with it was always for terminal children and I felt like I would be taking advantage of the organization. Years passed and I learned more about their foundation. I learned that they grant wishes for progressive, terminal,  and  life threatening conditions and due to Liam's difficult form of CP, he qualified under the life threatening umbrella. When you apply, you give them your child's doctor and permission for them to speak with them so they get the medical professionals diagnosis and not just your word.

Listen, no one wants to qualify for Make-A-Wish. There is something wrong with one of your most precious children in order to qualify and then, even when you qualify, it comes like a sucker punch to the stomach. It's sobering. While I was so happy to be able to give Liam a wish....it sucked to know his life is considered threatened enough to qualify.

After getting approval you get to help your child make a wish! I knew we would want to take Liam to Disney World, to let him see Mickey, to let him experience the magic, to have a real vacation where he could have fun and be a kid in a way that just doesn't happen anywhere else. We have never really had a vacation since Liam was born so a trip to Disney was what we asked for, we wanted this trip to make him feel special.

Make-A-Wish covers every detail for the trip. Liam cannot and will not fly so getting there had to be by vehicle so they provided a van for him to get there. Upon your arrival to Give Kids the World, a resort for only wish granted families, you are greeted with a cheery smile, the keys to your own villa, and a once in a lifetime opportunity....to feel normal.

I was very nervous on how Liam would do being out of his comfort zone. Liam is a stress vomiter. If he doesn't like a situation, he lets us know by trying to throw up. We can usually keep him from completing his goal but sometimes if he is really stressed he will make it happen no matter how hard we try to prevent it.  And taking him to a park with so many new experiences I knew would trigger his stress, however, I completely underestimated my wee guy. He LOVED it! He loved all the people, all the new experiences, and he even loved many of the rides. He loved zooming through the parks and being constantly on the go. He got to participate in so many fun things, just like a typical kid. He got to see shows, meet the characters, and get the VIP treatment everywhere he went! Now, he did attempt to throw up multiple times but we were able to get him calm as we talked through what he could expect to happen (Pirates of the Caribbean, Haunted Mansion, carousels, Dumbo, etc). The only "ride" Liam went on thta he didn't immediately start to panic at was The Hogwarts Express. We rode that four times in one day because he really loved it! Everything else took some convincing but then he calmed right down.

We had such an amazing time as a family getting to hang out all together and not be limited by Liam's disabilities. And one of the coolest aspects of the trip is the resort. They take care of everything. You do not have to worry about one thing. They have a full breakfast, activities through out the day and night, and even if you spend a full day at the parks, when you come home they deliver dinner to your door! They have miniature golf, a carousel, pool, train, games, a castle, and all of it is accessible. It's a special needs family dream come true.

This trip was also very special for our family because it signified a big change. Our oldest son, Ian, was shipping off to boot camp two days after coming home. The trip allowed us to enjoy each others company and not sit around dreading the day he had to leave. God's timing is always perfect as we were supposed to go in October and it didn't work out. We had such an amazing vacation getting to make magical memories that were definitely a once in a lifetime opportunity. We were blessed for sure.

Finally what seems to be an Answer.

I mean, would you want to sleep with that stupid thing around your neck??

Over a year ago, my sweet Liam started a new thing with his 'mouth'. While maddeningly frustrating for him and us, we chocked it up to it being one of Liam's newest stims (a behavior that is used to stimulate yourself in some way- honestly the best way to describe it) and waited for it to pass.

When Liam was just a wee thing he would chew on his inner right cheek. He did it for so long that he actually built up a callous in his cheek. After a year of that he moved on to sticking his tongue out and biting it. I have lots of cutesy pictures of him doing it. Then he moved on to sucking in his bottom lip and biting it. Lots of cutesy pics of that too. And then the newest one started. He would open his mouth, lock his jaw, and sound like he was choking. It's real cute let me tell you....

We thought this was another stage and it would pass but as the year, now year and a half, of doing it has rolled on with no end in site, it has had me asking questions to everyone in the medical world he sees. I mean, he will even do it if he wakes up at night! We first started out with OT who was working on oral motor issues with us. She had no idea what he was doing, is it on purpose? is it unintentional? is he doing it due to his CP? We worked at prompts to get him to stop when he started and let me tell you, he would work for Katie, cooperating like the cute little guy he is, but when he got home, nothing. He would actually gag on me if I tried the prompts. And you all know he can vomit at the drop of a hat if he gags from all of his years of experience.😳 So I quit that super fast!
After that we had PT look at him. If you need a PT, this is the one. She knows her stuff, loves her kids, and kills herself weekly loving on babies to make their lives better. She had the same wonders we did about Liam's purpose in sucking in air and choking himself. She would do a move that would make him stop it instantly. But watching him do it with her made me realize something, Liam wasn't 'always' doing it on purpose. Then one day during therapy instead of stopping him, she let him go on and on and on. Over and over he would cock his jaw open and compress his airway, then inhale deeply, close his mouth, then start again. And she was at a loss.



We had an appointment for Liam's yearly pediatrician check up ( thank God my little medical conundrum is healthy and we only have to go once a year) and when I showed her, she'd never seen it before. Not surprising, Liam humbles everyone I tell ya.

The following week we had a highly anticipated visit with a specialist in Chapel Hill to speak with him about Liam's hips. When I told him why Liam was wearing a neck brace and what would happen if I took it off, he nodded his head. I knew then this appointment was going places. I took it off and Liam performed right on time. Choking and sputtering away.

I told him no one I had talked to knew what he was doing and was hoping he could help us. He asked a bunch of questions and that brought us to the real issue and a solution (hopefully). liam is not doing it on purpose. His dystonia is causing either his neck, his throat, his jaw, or his pallet to contract and making him do it over and over every day. He said he has seen kids with it and recommended us to an ENT in Chapel Hill that can help us further. He also suggested we try Liam on Baclofen. This is a drug I know much about from being in the CP community and one we have never needed for Liam because Liam isn't too spastic in his muscles.

While I am thrilled to have a cause, I admit I am not thrilled about Liam being on the medicine. It has to be taken 3 times a day because its effects wear off after 6 hours. We were to start this week with only one dose at night to get him used to it because it (can) makes them sleepy. I was worried about how sleepy it would make him and so far on day 3 he's not shown any side effects. So tomorrow I am adding in dose 2.

We are praying this medicine helps him. He is so frustrated with this jaw thing and to have a medicine help him stop doing it would be a game changer for him. He wouldn't have to wear the stupid neck brace all the time, he wouldn't cry at night because he's woken up and he's sputtering for air, and he could concentrate better in school. 

Didn't see that coming.

Holy diagnosis, Batman!  I got an email to log into our Blue Cross Blue Shield account because new information had been added for Liam. I've never gotten a notice like that so I logged in to check it out. I found a page that I didn't even know existed. It's a list of everything that Liam has ever been diagnosed with. It's creepy scary. 

A personal health record, with line after line of issues.  Some of them aren't even true and when I click on them I am able to say he either no longer has the issue or delete it entirely. Like 'cerebral brain deterioration'. What the... I don't even know how that's there. His brain isn't deteriorating, nor has it since the day we brought him home. That's NEVER been a diagnosis that I was aware of.

Delete.

Tooth loss? He's not even lost his first tooth yet.

Delete.

TB-related miliary fever?  Nope.

Delete.

Complication of medical care?

How is that a diagnosis??

Delete.

 It's also interesting to look at who listed each diagnosis in his chart. Some are the medical supply company, the medical equipment company, some the therapists, some his doctors, and some are even from the pharmacy.  The pharmacy? I don't even know how they can list a diagnosis.

What's funny is that years ago, if I would have seen this list, I would have freaked out. I would have been sad, looking at a bunch of terms that the world has to use to define my son. It's a lot of medical terminology and scary sounding words (muscle wasting, anyone?). But I look at this list now and I don't see each individual diagnosis. I see an amalgam of terms that can't even begin to remotely describe my boy. He is not defined by his diagnosis, we certainly don't define him that way. He is unique, wonderfully created, and so much more than a sheet of terms could ever describe.

A few photos from the trip

I haven't had a chance before now to post pics* of our trip to Santo Domingo. As soon as I got home it became a rush to get get things done at the house, preparing me and the family for Liam and I to be gone for 2 weeks. We decided to move forward and do hbot and watched as God paved the way for this to happen as well as everything just fell right into place.

Liam had his first two dives today and will continue on until March 16th where we'll then return home for a while. We'll come back a month or so later for another 2 weeks of hbot. He does have some tender ears today but drops and diving slow should prevent anything serious from happening.

*Rylie has better photos-I'll have to post those when I get back to the family.

Looking out over Haiti

Traveling buddies

The gorgeous view from our room.

Acrobatic turtles at hotel's fountain.

Bienvenido!

Vials of stem cells ready for infusion.

Infusion taking place.

The thin line is the cath and the even thinner line is the stem cells being released.

Dr. Anthony who organizes everything...amazing guy!

Huge bed for such a little guy down there.

Getting breakfast at the buffet the morning after...no issues from the infusion.

Last view of the country from our window. The soccer pitch had people playing nonstop 18hrs a day.

Heading home!

If you could, continued prayers for Liam would be greatly appreciated...for healing by the stem cells and hbot and for definite miraculous changes in Liam.

Love you all.