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.

No more hardware!

Last year some shocking details were left out in advance of a procedure Liam went through. At the surgical consult, surgery, and subsequent 5 day hospital stay, no one ever thought to mention some pretty significant details, not even the doctors. I discovered the particulars on my own at one of the follow up appointments when they hung his x-rays up on the wall. They didn't look right and I snapped a quick picture with my phone as the doctor hurried out of the room. The Chapel Hill orthopedics department was packed full that day and we were lucky to get a room to get Liam's casts off. They were afraid they'd have to do them in the hall and with everyone rushing everywhere the doctor gave us just a few minutes of his time with broad grins about how great Liam was looking and that he was healing well. But to me, the x-ray look awful.

As soon as we got to the car I started looking at the picture. I couldn't wrap my brain around what I was seeing and Liam's newly uncasted legs were giving him fits so I had to care for him all the way home. Once we got home I started to dig a bit further into the weird picture and the obvious metal plates shining back at me that I had never before seen nor even knew existed.


It's quite shocking to be looking at your child's 4 week post op x-rays and come to the horrifying realization that they cut his thighs in half and braced them back together with titanium brackets and you had no idea it had been done. I was just sick to my stomach. I was physically ill all weekend. I messaged friends in the field trying to figure out what had happened.

Liam had been in a lot of pain during recovery and we assumed it was just a lot of discomfort from the tendon lengthening and the heavy casts with his legs spread 16" apart along with the hip correction. Apparently, there was a whole lot more to his surgery than the doctor initially let on.

I called the doctor bright and early Monday and shared my feelings about our big surprise. He was just as taken aback by my reaction as I was by his insistence that he had told me all about cutting the femurs in the pre-op consult. I firmly told him he was mistaken and reiterated a significant detail he told me at the consult. He said that he won't do this surgery on all the kids who come in needing it if they don't have a good home life, won't receive the proper post-op care, and won't get adequate therapy and follow up over the years to come. He told me he would do the surgery on Liam because he knew he was well taken care of and it would improve his quality of life and then he told me all about how they might have to use cadaver bone, would have to put a bolt in his hip, would try to save the socket, etc... I was able to recall almost the entire conversation with him.

Bulge on the outside of his hip from the hardware.

When I reminded him of our talk he halfheartedly admitted that he probably didn't fully explain the entire surgery. When he told me they would cut Liam's femurs, we had been talking about the ball and socket where his left hip was coming out.

He never stated he was going to cut both of his femurs mid thigh, realign them, and brace them. If he had, I never, ever, would have consented to having his right leg done. There was nothing severely wrong with that leg. The right leg didn't have an issue that needed such significant surgical correction. I would never have allowed both of his legs to essential be broken and casted at the same time, when the one wasn't even an issue.

We were in the middle of the school year when we scheduled the surgery, having been told Liam would only need a week to recover. I would have known Liam needed more time to recover than a week and wouldn't have scheduled it when we did if I'd known everything involved. He ended up missing an entire month of school, because who wants to go to school with two broken legs in casts that are separated with a bar? And all along we just thought he was just miserably uncomfortable, not recovering from two broken legs.

Another angle of the bulging hardware. Looks comfy, no?

When he admitted to not telling me all of the details, he stated that maybe the parents who are fully invested in their kids should see an x-ray of what their child's legs would look like after surgery so they know what to expect. I told him that was an excellent idea as I didn't get a say so before hand on what was coming. When I told him I never would have consented to the surgery on the right leg he tried to tell me that it would have had to eventually be done anyway, "because you see that happen all the time in these kids". Which frustrated me all the more because, as the parent, I get the final say so in how my son is medically treated. I should have been given the option to say no. I should have been told so I could have lessened Liam's suffering and prevented an unnecessary procedure from happening. It was not the doctor's decision to make in this instance. It was entirely mine.

Recovery from hardware removal.

Over the past year Liam has lost a lot of rotation and flexibility in his hips, had a significant increase in clonus of both legs (muscle spasms), he gets cold very quickly, and he no longer would lay on his side due to the protrusion of the plates. They were very hard and uncomfortable.

After a full year, if proper bone growth has taken place, you can opt to have the hardware removed. Which is exactly what we did. I couldn't wait to get those stupid plates out of his body and scheduled to have it done right at the one year mark. It couldn't come fast enough.

The curved top is what was sticking out from his upper thigh above.

We are only a week post op and I can tell he feels better already. Once all the swelling goes down, the pain subsides, and his incisions fully heal, I think we will have a much happier little boy.

He already has more movement back in his legs and I'm looking forward to the day when he can cuddle with me again. We haven't been able to do that in over a year.

I am always learning on this journey we are on. I thought I had asked all the right questions, I thought I knew exactly what was taking place during the surgery, and I thought I was well informed of the recovery. I wasn't. I can't beat myself up over it when he admitted to not telling me all the details, but it just goes to show that you can think you know what you are getting into when you suddenly find yourself thrown from your high horse into the ditch, trying to pick yourself back up, and wondering what the heck just happened.  So, we saddle right back on up, and keep on keeping on. :)

Unexplained

For a kiddo who only sees his pediatrician at his well checkup, seeing her 3 times in February was unprecedented. When Liam's fourth time running a fever hit I took him in right away. I was scared with his immune system still recovering from all the antibiotics he was on, he was potentially now getting sick with the flu.

Nope. No flu. Thank God! But no answers either. I did ask her to do a blood panel so we could check for any hidden sinister signs of trouble. It looked great! Whew!

I asked about all the 2 am questions that came to my panicked mind when I was trying to comfort Liam. Do you think it's his metal plates on his femurs causing rejection? UTI? Kidney infection? Recurring fever syndrome? Something more sinister? She doesn't believe any of those are reasons for his fevers and actually felt it was due to his constipation. Which he's had since his first round of antibiotics. Which is contrary to what a typical person gets while on antibiotics. Leave it to Liam for his body to respond opposite of what normally happens.

She said you see it a lot in the elderly but that brain injured kids can suffer from it too. That was news to me. We have suffered from some pretty difficult bouts of constipation and never experienced fevers before. But if that's what is causing it, I'll take it. It's an easy enough fix. 

We have had a variety of problems this month messing with his health and if we can get him working right again and there are no more fevers we are good to go. If we still have fevers and no constipation, then we will start digging deeper to the problem. But it's one of those issues where the Dr doesn't really know where to start so you just pick somewhere and go with it.

We helped him out yesterday and I am pushing lots of water. And Liam still woke up screaming at 2:30, completely inconsolable.

I'm telling you, the worst mom feeling ever is not knowing what is going on with your child. Throw in special needs and being non verbal and you feel utterly useless. Sitting by watching your kid scream in pain and frustration with no ability to alleviate their problem is the most humbling of experiences.

February Was Full of Fun

This month has certainly been challenging. Special needs parents face a whole other situation when our littles get sick. Compound that with being non verbal and you've got a fun experiment in trying to be a doctor with no idea where the patient is hurting.

Liam got a cold early in February that didn't want to let go. When the fever started and was still going strong 5 days later I finally braved the sick waiting room at the pediatrician to see what was going on. His ears, chest, and nose were clear and with the low grade fever he was diagnosed with sinusitis. With amoxicillin on board he started feeling better. But a week later the fever returned. Took him back in and the diagnosis was sinusitis again. This time they put him on augmentin. Several days into the augmentin the fever disappeared but the vomiting started. Cue traumatic flashbacks of the days when Liam threw up 5 times a day.

We are pretty darn good at trying to catch what Liam's spews which thank God are few and far between these days. But the ones in the middle of the night, those get nasty messy. Last night we went through 3 bed changes, 3 changes of clothes, draining his stomach so we wouldn't be woken up by hurling again, with a subsequent permanent wake up call at 4 am. 😱

We are thinking the augmentin was making him feel miserable along with the uncommon side effect of completely slowing down his bowels probably made him so miserable and uncomfortable for so many days.

We tried school today for the first time since last week in an attempt to show him he could do it and to get his energy and excitement back up. He last most of the day before he just couldn't go on. When the other kids went to recess they asked if he wanted to go. He said no. Then they asked him if he wanted to play on his eye gaze. He said no. They they asked him if he wanted to go home. He said yes. Poor guy was exhausted.

See how red his face his? Poor wee man kept it together as long as he could. 💗

Sleep study done

Liam had a sleep study recently that we are still awaiting results on. But you know your kiddo has a sleep problem when you get there for check in at 5:30 pm and he doesn't fall asleep until 4:30 am. 😳 I couldn't believe he lasted that long. He has never stayed awake that long before, 2:30 sure, but 4:30? I can't believe how well he can get by with so little sleep. I did feel very blessed in that with all those wires on his body and head, he was a happy guy the whole time. He didn't fuss one bit. And with everything he had on him I was surprised he did so well. We have to see his ENT in Chapel Hill next month to get the results, but I did walk away thinking that it was probably a good idea we went ahead with the study. Because they wired up everything, his chin and jaw were a part of the data and while we were there he did his weird jaw thing. So I am hoping that will be able to give the ENT some solid info on what he is doing so she can figure out how to help him with it. Now our next step is crossing off pulmonology.

A season of firsts

Nothing goes quickly in the world of special needs and after a trip to Shriners in the spring where hip surgery was recommended, we finally got in to specialists in Chapel Hill for a second opinion and establish ourselves with an orthopedist closer to home.  I was thrilled with the level of attention and we got better information than from Shriners.

Liam's left hip is close to being pulled out of socket. He needs surgery to repair both the hip and the socket and while they are in there they want to do some adjusting to his right hip as well. It will be a 2 day hospital stay with a 4 week recover in full leg casts with an 18 inch bar keeping his legs apart the entire time.

He is going to be so thrilled.

He asked me if Liam is in any pain. He hasn't been in his stander for a few months because he started crying when I would put him in it so I assume that was due to his hip. Do you ever get a 'catch' in your hip? That will happen to Liam and he is uncomfortable. And sometimes his hips makes a loud popping noise if we try to do range of motion. But for the most part he seems to not be bothered too much by it yet. He could just also be used to the feeling because it has slowly moved out over the years.

Chapel Hill was actually disappointed we hadn't been seeing them for the last few years to have kept Liam's hip from getting this bad. While there are no gaurantees that it wouldn't have happened eventually, we will never know if we could have prevented this. I am so confused as to how he was able to get to this point with no one noticing.

I am hoping we can schedule surgery towards the end of the school year so Liam won't have to miss much school. I meet with the surgeon next month to talk to him about delaying the surgery and if he thinks that would be ok to do.

Next month we also meet with someone new: pulmonology. After a check with an ENT specialist, who has seen people do the weird thing he does with his jaw, she wants us to rule out anything pulmonology wise  (asthma, etc) before we look at ways to help him with this muscle issue. That also led us to a scheduled sleep study in February to see if Liam is having any apnea episodes with this while he sleeps.

After those things are done, then maybe we can look at doing something to help him with the dystonic movements in his throat and jaw. She said she wouldnt even really know where to begin right now and wanted to make sure there wasn't something else going on that needed more attention.

So here we are, in a season of firsts with new doctors, new procedures, new tests, and new treatments. Praying that things get easier for Liam soon.

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. 

Shriner's Visit I

Liam had an appointment with the Shriner's Hospital for Children down in Greenville, SC this week. The appointment was actually set up by our pediatrician who when seeing Liam for a yearly check up was disturbed by the scissoring he was doing and felt that it was to the point where it needed to be fully checked out. I asked if we could just go to Duke since Greenville is 6 hours away but she really wanted us to go down there for a consult. Liam did great for the drive because he laid in the back seat reclining on pillows the whole time.  Now before you get upset with me for not having him properly seated and buckled, let me tell you- He HATES his car seat. It does NOT provide proper positioning for long periods of time and he can't stand it. It would be different if we had a wheelchair accessible van because he would be able to be in his wheelchair, but for now, we do what we can do and that is make Liam comfy and happy.





So, after driving all that way we literally took a 30 second x-ray and spent ten minutes with the ortho. I was hoping for a lot more interaction with some people since we really don't have any oversight for Liam in regards to nuero, ortho's, specialists in rehab, etc... but that was all we got.

The Dr told me that Liam's left hip (which is his much shorter leg) has a misshapen socket and the ball of the joint is shifted down from the center. He said it will eventually come out of the socket some time in his teen years and we can do one of two things: Nothing-which means when it comes out we will be managing pain for him for the rest of his life (depending on how bothersome it is to him) or we could do surgery to fix it and he would work on his right hip as well even though it isn't nearly as bad as the left. The surgery would be a four hour procedure and would require hip casts for 6 weeks with an expected return to Liam's "normal" in about 8-9 months following that.

He saw Liam's breathing (his goofy, stubborn, horrific habit of locking his jaw and closing his airway) and was concerned that he might not even be a candidate for the surgery because of his 'airway' issues. Because after all, 1 in 20 of  'these kids' die during the procedure. Yes. He actually said that to me. Sigh.

I know surgery has risks. Like, duh. But his airway is not an issue. He would be completely sedated and intubated for the procedure so his concerns were not my concerns. I know my boy and his behavioral oral fixations isn't one that would give me pause when thinking about proceeding with this surgery. He has a bad habit. He doesn't have an airway or breathing issue.

I told him he's never sick, never been hospitalized for sickness and I wasn't concerned.

He did mention us seeing a full team to evaluate Liam and look at him with new eyes. We have scheduled an appointment in June (the earliest they had) to see a "Tone Specialist" who is supposedly very good at what she does. It will be very interesting to have her lay eyes on Liam and have a perspective from someone who works so often with kids of such a severe nature. Liam takes no meds for his condition and that usually shocks everyone (the looks of surprise always crack me up). We've never had a good Dr on board to help us with him. He still may not need any, but it will be nice to know that and not wonder if we shouldn't be trying something else.

So for now, we at least know more information about Liam's hips and we will hope to garner even more info in June.

Not that you do.

Just in case any one erred in judgment and thought we have it all together, I would like to take a moment and say that pretty IG photos and FB posts do not a clear picture make.

While yes, my life could be worse (you can say that to anyone - of course life can always get worse), we are absolutely and always grateful for what we live each day, but sometimes days with a multiply challenged child are tough and reality bites hard.

Cue the vomit.

And Liam's new horrible habit of locking his jaw and closing his airway. Gagging. Gasping for breath. Then doing it again 597 times before the day is done.

Now picture him doing that in the middle of the night.

Cue the picture of the sweet little family all with children your own kids ages...if they had lived. Cue the happy-go-lucky faces of said children who can pose and smile on cue, reminding you that your kid can't.

Some days, life is asking you to take a punch in the gut - again. That doesn't mean I hate it. On the contrary, I love my life and the priviledge it is to be the mom. But the daily grind of a challenged kiddo can be taxing and on those days I think I am grateful for the moments where I look like I have it all together. ;) I can pretend, right?

Best $35 ever.

I happened across this really cool head rest while on facebook recently. It's original intent was for keeping kids from collapsing into a ball while sleeping in their car seat. But the momma who designed these has had special needs parents, like me, asking her to make one for them due to their little ones lack of head control.

While the headrest isn't perfect, because nothing involving Liam ever is, it has been a huge help keeping Liam positioned in his car seat. I'm usually having to reach back while I'm driving to help reposition him but when he has this support on he sits pretty well and I can focus on driving!😨

He didn't like it at first because we all know Liam doesn't like changes. And to him this was a big one. It took him a few days to get used to it.

Sherri is the momma who started making the Sleepy Time Headrest and she personally called me to talk to me about making one for Liam. She was more worried about making sure it worked for us than she was about selling her product. 

You can check them out on facebook or visit Sleepy Time Headrest to learn more. It velcros closed under the chin and with Liam being such an avid thruster,  I was concerned it wouldn't hold but it's done a great job and hasn't broken loose once. It's even been crash tested!

It's not usual to find a product for special needs kids that is this affordable!

Traveling with Liam is hard and until we can get a handicapped van, I'm thrilled to have something to keep us going with the vehicle we have. ❤

My other rant from the DR trip

When it was time to head home from the Dominican Republic and after checking in with Delta, we headed through to security. When we stepped up to security, I took our bags, shoes, and food and put them on the conveyer belt. I wheeled Liam to the metal detector and waited our turn. Security started speaking to me in Spanish. I spoke back in English and motioned that Liam couldn't come out of his wheelchair. They motioned me to take him out and continued talking in Spanish. I motioned that he doesn't come out of his chair and they just continued to stare at me.

Here's where stupidity really comes into play.

I am speaking English. I don't expect them to speak my language but since I just came from a counter where everyone spoke English and I was obviously trying to convey something about my obviously handicapped son, I assumed they would get someone who spoke English. I was not removing him from his wheelchair. Man, was I wrong.

They continued to look at me.

Finally a woman came across the detector to my side and asked me if he was a nino or nina. I said nino. She then motioned for me to take him out.

I might have started to get teary eyed at this point.

I shook my head no at her.

Rylie is standing to the side and telling me that they aren't going to let us through that I should just take him out of his wheelchair. I, however, was adamant that I not remove him from his "legs" and that it was a violation of all things sensical and humane for disabled persons to be treated in such a way. I knew Liam, who can not stand changes or transitions, was going to get upset, cry, and try to throw up on me right there in security at the airport all because they were too inept at how to handle a person with a disability who is in a WHEELCHAIR!

Rylie just looked at me like I was nuts.

The security lady just looked at me like I was nuts.

I wasn't getting anywhere.

Which meant I wasn't going anywhere.

I went against every fiber of my being and started taking Liam out of his wheelchair. And he started to cry.

Rylie took the chair apart and put it through the conveyor.

I stepped up to the metal detector carrying Liam who is now trying to throw up on me. Deep down I am thinking this is one of the most humiliating things I have ever experienced in my life and they kinda deserve to get puked on. At the same time I'm thinking that I don't really want to travel all day with puke on.

I walked through the detector when motioned through and by this time Liam was so upset and awkward to hold that I had to kneel down. I am now sitting on the floor just past the detectors waiting for them to come pat down Liam. The dude honestly did a tiny swipe of his left and right side and that was it. He couldn't really get to Liam with the way he was curling into me all agitated.

I was furious by the time it was over. I really was. Did they expect a 10 yr old, 15 yr old (insert an age), etc... to be taken from their wheelchairs and carried through a metal detector? The idea was preposterous and yet I was expected to do that with my 7 yr old. What happened to common sense? It apparently isn't very common these days, eh?

Coming into the US and going through security here was a breeze. When I got to the metal detector in Atlanta I looked at the man and I said "Please don't make me take him out of his wheelchair."  This sweet angel of a man said he wouldn't ask me to do that. I was able to go through the gates with Liam in his chair. After getting through we both got bomb residue tested (like Liam could make a bomb when he can't even hold a toy) and we both got patted down.

It would be great to have my grievance heard by the powers that be at the Santo Domingo Airport. I would just like them to understand a few things. I did email customer service after a few days of being home but I've never received a response back.

I want to be clear that I don't think they were doing anything malicious or intentionally humiliating. I believe they didn't think anything of what they were asking and didn't pay close enough attention to notice that Liam wasn't just another little kid in a stroller. If they had taken the time to look, and for sure they noticed afterword, my wee man is not your typical kid. He isn't even your typical special needs kid. But he is different and that was obvious.

Getting back to normal.

I've been wanting to give an update to our stem cell trip but some parts of the trip have really angered me and I needed a break before posting lest I look like I'm a ranting lunatic. But I probably will anyway so here goes...

Atlanta on the way down.

Can't you just see him asking if we're there yet.

The flights down there went pretty great. On our first Delta flight into the Dominican, a gentleman from business class immediately got out of his seat when he saw me get on the plane carrying Liam in that seat and he grabbed one side and helped me carry him all the way to the back of the plane. Not that I was going to refuse, but there was no way he was going to let me carry him alone. :)

On our return flight home I texted Shawn and told him I was never.ever flying with Liam again. It was the heat of the moment and I was done. Liam was over done. And I never want to do it again. Liam was a trooper. He really was. But sitting confined in a seat all day long when your body wants to move is painful.

On our first flight coming home from out of the Dominican he did pretty good. I got him situated well but he still isn't 'properly' seated so it can be a problem with his head control.

And that makes him cough.

So that's what he did.

The entire flight.

And the gentle(cough cough)man in the seat in front of Rylie rubber necked the ENTIRE flight to look at Liam. He even put his sunglasses on so he could stare with out looking so obvious. Like that wasn't obvious! I put Liam's iPad right in front of his face so the lookey loo couldn't see him.  Now, I understand, Liam is coughing. A LOT. But COME ON! Where did manners go? You look once or twice, can see the child has issues, then turn your face back around and keep to your own seat. Or, if you have a heart, ask if there's anything you can do. But don't ogle my son as if he has the freaking plague. He's obviously healthy, not crying, and I am attending to his needs. Leave us alone and get your staring fix by watching a movie. Rylie got a chance to stare him down when we switched seats and when he realized what she was doing he never looked back again. asdfghjkl...

After landing, a REAL gentleman in front of my seat, who never once turned around to look and stare, asked us if he could get our bags for us. That's what an empathetic, considerate person should do. I was so proud of him for being so kind. I wanted to tell him that but thought it would be too weird.

Trying to wake from the propofol after the extraction. This time they extracted stem cells from both hips.

When we got to Atlanta we had a three hour layover. I was happy about that because it allowed us time to get Liam out, eat, and just relax before another plane ride. Well, Liam was at his over done point. He was crying and crying and while Rylie and I tried to eat he wouldn't calm down. I had to get up and walk with him and let Rylie finish and then we'd switch off. Each time I walked him back to the tables where we were eating he would freak out and cry even harder. We switched off and I finished my now ice cold dinner and kept an eye on Rylie as she walked with Liam. Whenever she'd get close to my table he would cry again. I grabbed Liam and took off for the bathroom so he could lay out on the counter and relax and when I picked him up I lifted his shirt and saw a dark black and blue depression on his spine. His stroller straps had gotten twisted and had knotted right on the middle of his back and even though there was a thin cushion over it it was still digging into his spine.

After the cath, he wasn't complaining & for that I was shocked & happy.

I felt horrible. My poor wee man had been trying to tell me he hurt and I thought he was just bothered by all the traveling. Mom fail.

With the bruising on his thighs from the procedure and now the bruising on his back, he was not a happy guy. He cried for the rest of the layover. I felt so bad for the people in our tiny little terminal. They were probably only 20 seats and there was no escaping Liam's irritability.  None of them stared at us though. ;)

Once we were home Liam ran a low grade fever off and on for days. It would only last a couple of hours at the most.  He wasn't miserable, but he wasn't his happy self either and with not being able to give any medicines due to the stem cells, we relied heavily on homeopathic treatments to treat his discomfort. We did onions on the feet, egg whites on the feet, essential oils on the chest and feet, colloidal silver, and extra vitamins. It was the first time I've ever had one of my kids go medicine free for pain from a fever and Liam ended up doing really well.

He had to miss several days of school out of pure exhaustion and crankiness though and it took a full week following the procedure before he was back to his old self.

People ask when we will see improvements. It's a valid question. When will we see improvements? I want to see them now too. I'm praying we will see them now. But we might not see improvements for a while. It could be up to a year. And that's a long time to wait looking for signs of answered prayers and hopes and dreams.

This is the moment, after 20 min of a flipping, curving catheter, the Dr finally got it through and up into his carotid. You can't hear them in the room but they all shouted and whooped and were giving thumbs up in relief for finally getting it.

The gorgeous sunset view from our room. Ocean on the left & mountains on the right.

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.

What's Wrong with Him?

I don't know if you remember this post I did on the old guy who had to hold his teeth in place to ask me, "What's he have?", but it was the first time I'd essentially been asked by anyone what was wrong with Liam. He took me off guard not only how he asked but also by how he worded the question. I really couldn't get past the stupidity of his question let alone how he asked it.

Today I was holding Liam in the waiting room at his therapy practice when a sweet little boy kept staring at him. I would look at the little boy and he would grin back at me. After several shared smiles he finally gained the nerve to ask me, "What's wrong with him?" 

Liam has so many issues that scream, I'M UNIQUE that it kind of makes me surprised we haven't gotten it before now.

I had prepped in my head for a while now what I would say when that question came up. But wouldn't you know I lost all ability to respond the way I wanted to? So I just smiled back at him and he smiled at me and turned back to the movie playing quietly on the opposite side of the room.

No matter that I didn't answer, this cute little boy was not done with his curiosity. He looked back around to us and smiled again when I caught his eye. He pointed at Liam and asked me again, "What's wrong with him?"

This time I was able to get the words out. Ready to explain, I asked him if he knew how he gets a boo-boo. He nodded his head yes. Then I told him that Liam has a boo-boo too but his is on the inside and you can't see it. I told him it was in his head. I started to go more into what the boo-boo means for Liam specifically, but with his curiosity satiated, he turned back around and glued his eyes to the movie for the remainder of our time in the waiting room.

I actually ended up disappointed that I didn't get to go into further detail to this little boy. I wanted him to ask more questions so I could give more answers. I wanted him to know that it was ok to be curious, that Liam wasn't something to be afraid of. He wasn't something to look past and pretend wasn't there. I wanted him to know that his curiosity was a good thing and that it's the only way people will see special needs kids as equals is if they learn more about them. I wanted him to know what was 'wrong' with Liam.

The natural curiosity of a child is a beautiful thing. It's how we will raise the newest generation to appreciate and value differences in all of God's children. Sowing into kids the worth of each person no matter their abilities will bring about adults who don't stare and ask, "What's he have?".

Who's your tribe?

What happens when you don't fit in specifically anywhere and yet everywhere?  It's a question I pondered with my friend this past week and has had me ruminating over ever since.

Friendships develop and are cultivated over time because of shared memories, experiences, trials, and just a genuine love of and for the other person. Some friendships are forged through tragedies, life altering experiences, health issues, common interests and just for want of companionship. Today women can find any number of groups to belong to online, uniting even the most commonplace to the unequaled. It brings a sense of community and fosters relationships for woman bringing experienced and knowledgeable people who've 'been there, done that' to those who are just now heading down a new path.

People want to find purpose for their struggles. What better way to do that than to mentor others, to comfort others? Afterall, it's biblical.

2nd Corinthians 1:3-5
Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the god of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves received from God. 

We want to comfort others.  We desire to share the comfort we have received with those who are hurting. Our exposure needs a purpose. We desire a tribe. It's also a mom thing. Women are designed to nurture and take care of others.

I'm probably not unique in that I could stick myself in any number of group associations. But I'm probably not too common in regards to the types of clubs I could find myself trying to relate to. Wondering where I could share my experiences and where I could mentor others brings me to the question of which one should I choose? Where is my tribe? Where exactly do I fit in?

Unfortunately I could choose any one of these:

• The Congenital Heart Defect group. My oldest daughter had a severe heart defect at birth resulting in congestive heart failure and open heart surgery before 6 months of age.
• The miscarriage club
• The multiple miscarriage club
• The stillbirth club
• The twin club
• The infant death club
• The twinless twin club
• The micropreemie club
• The cerebral palsy club
• The rarer form of cerebral palsy club
• The parent of a multiply disabled child club
• The care-giver of your own parent club

 Which one do I go with? I can't possibly go with them all. There's too many to choose from and I still feel some days that I shouldn't belong to a single one of them.

I believe God has made the choice obvious for me. He has opened the door for me in the area of special needs and continues to walk with me directing me through more doors, veering my life ever in the direction of supporting and encouraging those with special needs. I admit, I am amazed at how clearly he continues to direct my path in this area.

My pastor asked me the other day, "Did you ever think God would be having you do all of this and growing a ministry like this?"

My answer?

No.

No I did not.

Tricky Heads

We have spent a long time trying to figure out something we could do to help Liam with his head control with no luck. And faced with a classroom environment for school this next year, we really need to do something...anything.

Working with the DME (durable medical equipment) company in our area, while they try to be helpful, can frustrate even the most saintly of souls. We have had two PT's, the mom, and the preschool teacher trying to figure out what was available, what we could trial, and eventually use permanently to help Liam with head control and we got no where over the last 3 years. Yes, heads are a tricky thing when it comes to equipment (not all head control issues are alike), but having spent the last three years only trialing out one thing is a sad testament to the state our children are in: needing adaptive equipment and not getting what they need. We are getting nowhere. Liam's not an isolated case here. And it's frustrating for everyone involved. I'm not exactly sure where the breakdown occurs, but when you know there is equipment out there that could help your child and not only can you not try it out, no one seems to be able to know how you could go about doing so, you tend to get fed up after a while.

With that in mind I decided to just go ahead and get Liam's Head Pod myself and not wait for medicaid/DME/school, etc to figure this all out.

There is only one licensed distributor in America for the pod and it ended up being cheaper than I thought. Still pricey at $330.00 but when compared with Liam's neoprene chest strap on his wheelchair (you can see it in the picture below) costing $375 to replace, you can see how the Head Pod is a steal!

It took us about an hour to get it put together and situated just right for Liam. It's not difficult, it's just having to piece together everything and figure out what sizes he needs and where it all goes.

Liam was patient and tolerable for the first half hour but the second half he started to get upset. The strap kept slipping off the back of his very flat head and I was afraid the Head Pod wouldn't work right due to him not having a nice bulging occipital lobe.  We found out that if you strapped it tight enough, he starts to look like a Shar Pei. And even though his forehead is covering his eye balls, his head is up! We're looking on the bright side of things here.

The device comes with several adaptors for the unit to be used on different pieces of equipment. We still need to adjust this area because it isn't ideal yet and the unit will come apart when Liam bounces around. But this is a definite step in the right direction for Liam and proper positioning. His PT and preschool teacher saw it for the first time today and they loved it. Ideally Liam should be spending copious amounts of time in it each day to help him build his muscles and strength and stamina. I got two hours out of him today so he's already getting used to it and making progress. He can even sit at 90 degrees with his head up for periods of time without using the pod.

The video testimonies on their website are compelling. Liam is different, as always, in that with his CP he moves a lot. He does calm and relax after a while and after having his PT and preschool teacher work with him in it yesterday, the results are pretty promising.

Rubber neckin'

An open letter to all you rubber neckers out there:

We can see you staring. I can see you out of the corner of my eye, that place I don't want to look because I know you won't stop staring. Even though I don't give you direct eye contact I can still see what you are doing. I won't look at you because I don't want you to think that by my meeting your gaze I have approved of your irreverent stare. It is times like this that I am thankful my son is so near sighted and doesn't care about social eye contact. But you see, I don't have vision issues and I can see you staring, practically gawking. Do you think we can't see you or did no one ever teach you manners?

 If I hadn't had to throw my trash away I wouldn't have even given you a second glance, but I had to walk by you to get there and you just couldn't leave well enough alone could you. You just couldn't stop at staring. You had to go to the next level and ask a stupid question. Why? Do you have the same disorder? Then you should understand and start out by saying so and after relating to me I might be inclined to carry on a conversation with you. Does your sister, brother, uncle, friend, or cousin have a condition that looks similar? No? Then you are just asking to satiate your curiosity.

We are not out in public to answer your questions. We are out as a family, even though it's difficult, so we can experience some normalcy like everyone else. We are not here to answer your questions about what disorder my son does or doesn't have. I am all for education but not when we are at dinner. And not when you have been staring so impolitely. And not when you say, "What does he have?"  How insulting. How about a hello first? What do you mean what does he have? That is a big box of alphabet acronyms that you couldn't even translate let alone understand.

If you are so inclined to indulge in your curiosity, might I make a suggestion? In the future, when a person who is different catches your eye, they would be more interested in talking to you if you didn't stare so openly, if you didn't talk about them where they can hear and see you, and if you approached them in a manner they wouldn't find offensive. How about beginning a conversation with one of these starters?

•  A simple hello is a perfectly normal, typical, conversation starter. It goes a long way.
• What's his name?
• How is he doing?
• How old is he?
• My friend has some issues very similar to your son and I was wondering if they were the same.
• I noticed your son was having trouble, is he alright?
• Your son is adorable! I don't mean to sound rude, but I was wondering if you wouldn't mind sharing a little bit about him.
• Ask my son something yourself! He might not be able to speak back to you but you just acknowledged him as a fellow human being and that goes far in my book.

This note might sound snarky and while in a way it is, it is almost certainly an acknowledgment of the fact that I wouldn't ever mind speaking about my son and educating others about what issues he faces if I was approached in the right manner. Don't just blurt out *"What does he have?" as I'm walking by. You would never approach someone with no hair and assume they have cancer and shout out, "Whatchu got?"

* After he asked me what Liam had I asked back, "Who?" He then replied again with the exact same question. I felt like I gave him an opportunity to converse with me in an appropriate manner by giving him a second chance to rephrase or engage but all I got was the exact same question again. Liam was holding a stuffed otter and I reallllly wanted to say, "He's got an otter!" and walk away. Obviously I knew that wasn't the info he was after and I felt a tiny bit of education was in order. So I gave a very simplified response and said, "He has cerebral palsy." He immediately turned to the other guy he was with and that guy said something about so and so having that too. I waited. He didn't say anything else to me and frustrated, I just walked away.

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.