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.

Our Favorite Days

Liam's #fromwhereistand on Instagram

We've had a very beautiful fall in this area of NC this year. The colors have been gorgeous and long lasting due to extended amounts of rain. My Bradford Pear in my front yard just finished dropping its bright yellow leaves today.

I try to take advantage of the weather this time of year to get Liam outdoors. Liam does not handle heat well so it's too hot here in the summer to take him out for very long. We pretty much spend all July and August in the air conditioning which means when fall rolls around we are antsy to get out and enjoy our favorite season.

The only really good nature trail I've found around here that's wheelchair accessible.

 We have a nice short trail that ends at the river nearby that makes a really great place to take Liam on a hike. It's perfectly shaded all the way to the river landing. It's "wheelchair" friendly meaning it's flat and wide. The trail is not paved, it's gravel, and there are a few bumps in the off shoot trails but if you have a jogging stroller it's perfectly accessible.

I wish there were more places to be outdoors with Liam while he is in his chair. We all love being outside and hiking/walking but can't enjoy that much anymore with wee man confined to a wheelchair. You don't know what you've got 'til it's gone and we sure do miss the days of being able to explore and hike. You don't realize how hard life is in a wheelchair in the great outdoors until you're limited by where your wheels can take you.

My boys.

We came across this beautiful spot recently and was able to take Liam in his jogger for a short time through the trails along the river but the terrain became very rough and we had to abandon our journey and hang out at the river bank. Ian's such a great big brother and took Liam down to the river to dip his toes in.

No joke, I walked out to put Liam's stuff in the truck to take him to school the other day and this pile of leaves was in a heart shape on his wheelchair ramp. I was sure one of the kids did it but since it was very early in the morning and they all said they hadn't, I am taking this as a sweet message from the Lord. :) He loves Liam.

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.

Disability Pass

Did you know that some theme parks, events, zoos, and museums offer discounted passes for being a person with a disability?  You might be wondering why this would be necessary, after all, their body is taking up space at the park just as much as a person with out a disability would. In fact, they might be taking up more space due to a wheelchair, walker, and/or medical equipment. Yet, they get a discount. Seems a bit unfair from the outset, yes? I honestly had never considered what a benefit that could be until we had Liam. Now I get it.

We recently went to the NC Zoo in Asheboro and I called ahead to see if they offered a discounted pass for bringing my child who just so happens to be in a wheelchair. The first person I talked to said they did and she directed me to get more information from another woman who then told me that they didn't. "But," she says, "we have braille placards at the exhibits." 

Well, la-ti-da. 

Braille cards.

How helpful.

Knowing the zoo was handicap accessible we went anyway, even at full price admission, because it was Liam's first time going to the zoo and I figured it would be worth it.

Meh.

I figured wrong.

Liam thoroughly enjoyed the otter exhibit. Since we could wheel his chair right up to the glass and he could watch the otter dance and play in the water directly in front of him, it turned out to be the highlight of the trip.

However everything else was a joke. Seriously, a laughable joke. The animal exhibits would be too far away to even see the animals, they were at awkward angles from the viewing area so you had to stretch to get a glimpse, or the animals were all asleep, hiding in the grass or in their homes. I walked away knowing why a discount on his admission pass would have been such a big bonus.

•  Admission prices are high. When you are bringing a child that can't stand to look around obstacles and can't manuever his chair into positions to see anything, the point of the zoo becomes pointless.
•  Liam is legally blind. Braille cards are of no benefit on an exhibit that doesn't even have an animal present or has an animal so far away that people with no vision issues can barely see. 
• There was constantly something in the way preventing a child in a wheelchair from being able to see properly. Even the glass enclosed reptile exhibits had fogged, opaque glass that made it hard for me to see in.
• Liam's wheelchair weighs almost 50lbs. With Liam in it we are close to 100 lbs. Even though the park is handicap accessible, pushing a 100+lb stroller and child loaded with supplies up hills is exhausting. I'm not in great shape but I'm not totally out of shape either and I had to pass the stroller off to my son several times due to the incline of the hills and the weight we were shoving up it.
• There were few places to relax in the shade. We went on a sunny spring day but Liam got overheated sitting in his black frame chair and there was no where to go to get him out of the sun to cool off.

I'm not trying to be a complainer here. I'm pointing out what wouldn't have been obvious before Liam came along. Even though this is a handicap accessible place, it's not handicap friendly. And there's a big difference between the two. We paid the same admission across the board when my handicapped son couldn't participate, engage in, or see most of the exhibits. And I think that's a shame. They should offer a disability pass.

Caring for a child with multiple disabilities is hard. Getting out of the house and engaging in family-friendly activities is even harder. Not only due to the logistics of his handicaps but due to costs. That's why a discounted pass for Liam would have been helpful. Costs run high when you care for a child with disabilities. Getting to take a family on an outing that is expensive can be very financially limiting and paying for a ticket for a non-participating participant is painful to the pocket. We would be more inclined to make an effort to do outings of that nature with an incentive.

I appreciate all of the companies that offer discounts and services to those with disabilities. Truly grateful. Because they see what most people don't. If you want to get a family of 6, one with major disabilities, into your facility, make it worthwhile for them. Offer them a discount. Offer them special incentives to get them in the door. After all, having a family pay full price for only 5 family members is better than the family not coming at all.  

Halloween-n-dreams

I wish I could plan something in our community for the special needs kids at Halloween. This holiday can be the toughest of them all for our children. There are numerous issues that can impact a special child's ability to enjoy this day:

• sensory issues (not able to wear a costume)
• non-verbal (can't say trick-or-treat or say it well)
• motor planning issues (can't get their hand into a bowl)
• fine motor skills (can't pick up the piece of candy)
• wheelchair bound (can't even go door to door to participate)
• vision impairment (self explanatory)

Just one of these things can seriously impact a child's enjoyment of this holiday let alone having more than one thing on that list (which is by no means exhaustive).

Liam has several of the issues on that list that prevent him from enjoying Halloween. We try to make the best of it, but there is not a neighborhood anywhere around where he can go from door to door in his wheelchair and participate in trick-or-treating (narrow paths, steps, uneven walkways, etc. not to mention Halloween decor that he will grab and take with him). And everything is so dark he can't see what's going on very well either.

If I were able to plan a Halloween for our kids I would love to have trick-or-treating take place in the mall. It's bright, open, wheelchair accessible, and could give many special needs kids a safe place to trick-or-treat. There could be numerous ways in which to give kids a chance to go 'door to door' inside a mall (have booths set up, tables, refrigerator boxes for houses, etc) and let them experience Halloween in an environment better suited to their needs. How cool would that be for them...

We took Liam to our church's fall festival this year instead of going with his older siblings trick-or-treating. He wasn't having much fun though and had been coughing, getting progressively worse as the evening progressed. By 7:15 he was conked out and running a fever. So much for showing him how much fun Halloween can be by getting gobs of candy and sharing it with his mom...

He's the Doctor.

Doctor Who?

A witch, the 11th Doctor, the Tardis, zombie, & a hobbit.

The Doctor is out.

Special needs kids truly have unique, different needs that can be misunderstood and overlooked. In the midst of the chaos of trick or treaters, costumes, and candy, are a large minority of kids who just want to participate but can't.

Early Christmas Gift

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.

Liam's New Ride

Liam was quickly outgrowing his Eddie Bauer stroller and it wasn't a good fit for him anymore with positioning. We trialed out a couple of stroller/wheelchair combos and although everyone of them had a negative to it, the Otto Bock Kimba was the wisest choice.

It is German made and looks it. It's big. But that is a good thing because it will fit Liam for years. And since insurance only pays for a new one every 3-4 years, we needed something that was going to fit Liam until he was 6 or 7! This one has a lot of room for growth so it's going to last.

From start to finish we got Liam's Kimba within 6 weeks! That was a record for the therapy place we go to. Usually getting a purchase like this takes months and months.

I love having it. It's so nice to have Liam sitting up properly. It is heavy so I have to dismantle the seat from the frame to load it in our truck but it hasn't been too much of a hassle to do so.

This chair had to have some customization done on it. Because Liam retracts his shoulders and keeps his arms out, they made two plates and padded them and installed them behind his side lateral supports. It's great! It prevents Liam from pulling his arms back too far and getting them caught behind the frame of the stroller.

I love that it allows Liam to sit up better and see the world. And although this is officially labeled as a wheelchair, it's nice to still be able to push him in a 'stroller'.

I've had several things to post about this last week and it seemed like the week got away from me before I could get anything written!

Liam had his 1 year well baby check up (a bit late since he is now 13 mo corrected) and we got another lovely weight gain so he is now a whopping 16 lbs 10 oz. I know what you're thinking... he is becoming such a chunky monkey, right? That's what I was thinking. But guess what? He isn't even ON the growth chart! Yup. He is so far below it looks like it will be a year before he even gets on it! And so as not to make me feel bad about the fact that Liam is a little lot underweight for his age, the Dr. said it would better for him to be underweight than overweight if he has to spend the rest of his life in a wheelchair. Ahem... WTH? Really?

I didn't say anything when he said that. I didn't really know what to say. But now that I have thought about it. I have a LOT to say about that...

Do you realize what you are saying? Do you realize how we have hopes and dreams and you can just deflate our hopes with one poorly thought out remark? Can you see the future? Do you have a direct line to God about what His plans are? And least of all, what difference does it make if an immobile person is overweight or underweight??? I think that would be the least of anyone's worries!

Ok- I feel better getting that off my chest! Thanks for being my sounding board.

Liam was on the chart for height, although he was only the 3rd percentile. But I really think they weren't using a preemie chart and I didn't even think to ask. Liam is still gaining and growing and that was all that concerned me at the time.

Liam also had his one year evaluation for the early intervention services he receives. It was nice and relaxed and I didn't feel it necessary for Liam to perform. I thought he did fairly well, considering his delays and I could answer many of her questions positively. He will still receive services for the next year, of course, and we are looking at maybe adding speech to his routine. Liam loved this red mirror they had and he would look at it and smile. He also tracked it very well. He tried to grab toys when she put them in front of him. I think his new glasses are really helping him focus better and see farther. Doesn't he look adorable?





Liam got a stander this past week. If I hear my PT right, we aren't using it for "standing" (I know, it is called a stander so you can work on standing) but we are going to use it for head control. He will get the benefit of standing in it and bearing weight on his legs in a proper position but it will hopefully give him the stability and response he needs from his body to lift up and work on his upper torso strength. He's vomited everytime I've put him in it, but thats because he bends over and squishes his belly while I am trying to strap him in. To make it fun for him, I tip him over backwards in it and he thinks it is quite funny. It keeps him laughing while he is in it. I don't know that we get to work on much head control when I do that.... He looks like he's posing here, huh?



My 13 yr old, Rylie, is pretty observant and noticed that Liam didn't look like his legs were the same length when he was in the stander. I just though it was because he prefers his right leg to stand on and he is now standing flat footed with that leg when he used to be on his tippy toes. I noticed it even more after she did and saw that when he stood flat on his right leg, his left foot didn't seem quite right. I mentioned it to the OT doing the eval. today and she said it did seem that his left leg was shorter. But, who knows if it is musculature or skeletal at this point. Just something else to add to Liam's laundry list.




And last but not least, we got into the Chapel Hill feeding clinic for May 18th. I don't know how God worked that one, because when I originally called they didn't have any openings until August! They told me to bring him hungry. It will be interesting to see what they have to say and if they will actually be of any help. We've coasted this far. I'd love to start cruising.