See Christian and Lola's ISR video!

Wednesday, December 18, 2013

Updates, the Dentist, and an Early Christmas Present

I haven't updated in so long!

In this case no news is good news. Christian is doing great. Aside from a few short-lived kid colds, he's had no major sicknesses and I couldn't be happier. No throwing up, no nothing!

We had a great Thanksgiving and that holiday is one that reminds me how thankful I am for a blended diet. Everything we ate for Thanksgiving, Christian got to have in his blend. It's such a blessing to be able to share these traditions with him in our own way.

But, wait, Christian didn't just get to experience having a Thanksgiving turkey, mashed potatoes and cranberry sauce through his tube, he got to taste them, too! On Thanksgiving he actually got to have some sweet potato, mashed potatoes and gravy, whipped cream, and ice cream (his favorite). He wasn't crazy about the mashed potatoes, which didn't surprise me because he likes things with a lot of flavor. But he liked the sweet potato and, of course, the ice cream. He didn't just taste it either, he ate a good bit of it, too! He's doing so well with taking things by mouth. Food has definitely become a motivator to get him to vocalize and make some choices.

We've also started to work with his speech therapist at school on a new communication system that will teach Christian how to respond consistently using a "Pods" system. We'll be working that out and beginning that next year. I know he has things to say we just have to figure them out! He's not the one with the problem, it's us!

Yesterday we went to the dentist and he did great! No cavities or decay. That brushing at least three times a day with the Frazier Water Protocol is definitely paying off. But now Christian is toothless! He lost his four bottom teeth (and his adult teeth are right under the surface) and now his two big top teeth are gone. My theory is that his gums had been swollen and taking over his teeth for a while. When we increased the brushing, his gums stopped swelling and released the hold on his teeth a little and out came his teeth!

Other things we learned at the dentist:

Wheelchairs make the best dental exam chairs.

We also asked about a palate expander. Because Christian doesn't use his mouth to eat regularly, his mouth and palate did not form correctly and the roof of his mouth is really high and narrows toward the airway. This malformation could cause problems down the line with his breathing as he gets older. So a palate expander will hopefully open that narrow area up more, allowing more air flow as he grows. We have no breathing or apnea issues NOW, we're just planning for the future. We have a consult with an orthodontist next week.

Because Christian had a dentist appointment I decided that afterwards would be a mom and Christian date. So we skipped school and headed off to the mall for some Christmas shopping! Part of one of Christian's Christmas presents was to go to Build A Bear and design his own bear. We all know Build A Bear has a ton of accessories for the bears but a few months ago I found out they have little wheelchairs!!!

So you can guess what will be under the tree for Christian, right?

It was a fun experience, though. I went early in the day so we were the only ones there. The staff paid lots of attention to us and spoke to Christian directly, calling him by name, and saying, "Bye, Christian!" as he left. Those things are important. Christian got to pick his bear by feeling them and looking at them and he made definite choices using his little smiles, his active hands, and his voice. And then you know the part where you have to step on the pedal to make the stuffing go? Well, we just rolled over it to make it go!

Sometimes I never know how these experiences will go. Will he respond? Will he like it? Will it be a bust? But this experience turned out better than I expected. He actually did make choices and look at the animals and it's going to be a great Christmas present for him!

So that's what we've been up to! I have a few more updates and thoughts on my mind to come but as far as Christian goes, he's doing great!

Friday, November 8, 2013

The Best Halloween Ever

Hello, Everyone!

I wanted to update about Halloween! It was probably the best Halloween we've ever had.

We decided that Christian would be Jake and Lola would be Izzy. It worked out because Lola loves Jake and the Neverland Pirates and Christian often watches the show with her. I also wanted them to match because it's only so long that Lola will want to match with her brother.

So I bought the costumes at Target and then it was on to building Christian's other costume. His wheelchair costume!

Jake and Izzy needed a pirate ship.

Daddy constructed a ship out of cardboard that fit directly on to the wheelchair. Then Mommy decorated it and constructed the mast out of a sheet of felt and blue streamers.

Then it was time for Christian's school parade! Everyone was high-fiving all of the parade participants but when it was time for Christian to come around, they all stopped and cheered. I could hear kids saying, "That's awesome!" and "That's the winner!"

There was no contest but it was hard not to cry all over the place watching them cheer for him. One little boy even said, "Oh, man! I wish I was in a wheelchair!"

Later that night we went trick or treating and all the kids from school recognized Christian's pirate ship. We kept hearing kids yell, "Christian!" in the dark. They'd come over and say hello. Parents said hello and commented about what a cool costume he had. And cars even pulled over to check Christian's costume out. An Escalade rolled down its window and the man yelled out, "That's tight!"

It was amazing. So much acceptance over something so small as a Halloween costume. All of it was so worth it. Just some cardboard, Duck tape, felt, streamers, and hot glue bridged the gap and bought Christian a bunch of new friends. Even retelling the story can choke me up.

We can never move schools. These are his friends. They all know him and want to help. We are so blessed.

Saturday, October 26, 2013

Just fine.

Some people believe life is made up of moments that define your life. There is a before and after that begins and ends chapters in our life.

Before I had my son...

After I was married...

Before I had cancer...

After the war...

I remember the moment we were in the hospital when Christian was just over his worst moment. It was just after the first twenty-four hours, I think. He was in the worst room. And what I mean by that is he was in the room where the worst cases go. It has the most room for the most doctors and the most nurses.

There was a nurse who cared for Christian and as we were grasping for any kind of light and hope she cared for him with a smile on her face. I don't remember what we were talking about because I was careful not to ask what professionals thought of him as I already knew what they'd say. But I distinctly remember her saying, "He's going to be okay. He's going to be just fine."

At the time, I needed it. But thinking back now I think that was really ballsy of her. I mean it was sweet but how did she know he would be okay? And what was her definition of okay? Was she just saying that to make me feel better? Don't registered nurses know better than to say something like that?

I've thought about her over the last four years and I think she was right.

There was another moment that happened recently. Christian was given his first award. He was one of the only two kids in his class to get the special award of academic achievement. The teacher announced that he was a good role model in class and had adapted really well so far this year. The principal handed him his award during the ceremony.

It was a blurry moment. But it was a moment. 

You can imagine how proud I was of him. How far has this kid come?! Never could anyone have guessed that this child lying lifeless in the worst hospital room on the floor would be receiving an award four years later. I believed on pure and blind faith but to picture it in its entirety was just...just...something I couldn't ever picture! 

She said he would be just fine. And she was right. Just fine looks a lot different than what I thought it would but it doesn't take away the fact that he ended up being just fine in his own way. I don't know if that nurse knew what she was saying but he is just fine in a way I didn't expect, but I also didn't expect that his fine would be so awesome.

He had speech therapy today. He was eating a Reece's Peanut Butter Cup McFlurry. He was doing things in with his tongue he hadn't shown his speech therapist before. He was vocalizing, swallowing, he wanted more, he was interacting, I mean, don't get me wrong, he does have a huge crush on his speech therapy, but he was truly showing off! He even had her in tears for a second! So I got a little teary. 

On the way home I felt so unworthy of him. Like I don't deserve him or how well he is doing but I have him and I am so in awe. He is the most amazing blessing and I am better because of him.

I love his just fine.

Sunday, October 13, 2013

The 10%.

There are peaks and valleys in this journey. And I hit a little valley. So I thought it best to just stay silent and process it before writing it out. That's what usually happens. The writing comes after I've made a little more sense out of what's going on.

Nothing major. Don't get worried. Christian is doing well, healthy, no complaints or concerns right now.

I think it started with our trip to Mexico. It was a little different than recent years and there were more children around that were very curious about Christian. I think Christian is getting to an age where adults and children have more questions. He's getting bigger and looking older. He's no longer a double take for someone to wonder if he's just a toddler in a stroller. No. He's a full grown five year old in a balls to the wall wheelchair. Not a push chair. Not a modified stroller. A wheelchair.

Lately there have been more questions. Kids are more curious. Kids are scared. Kids wonder what happened to Christian. But they're all very adorable and want to know how they can connect with him. I guess what's worse is when they completely ignore him. But is it worse? Sometimes I wish we would get ignored...not stared at...not asked questions. Sometimes that's okay with me.

So in Mexico there were more kids around his age. We got more curious questions. And then more curious questions. I put on my happy, question answering face and tried to answer each one like always so as to make sure nobody felt uncomfortable. Maybe I was overly sensitive. I was probably oversensitive at the time, now that I think about it. But at one time I felt like I had just answered the same question. I couldn't get my voice any more high-pitched-helpful and I finally responded with, "What do you mean?!" As in, didn't I just tell you? No. It was her brother I had explained to about Christian. So now it was time to do it again.

There was a time during that vacation that I was sitting at a table with a six year old. And it hit me that the conversation I was having with him about his ice cream is something that would be happening with Christian. It's like I was fascinated by this realization. I tried to picture Christian in this conversation and it made me sad. I just wanted to stay in this ice cream banter and keep imagining what it would be like talking to Christian.

Look, I can only be happy-smiley-face-helpful-cheerful-voice-question-answering Shauna about 90% of the time. The other 10% is that I don't want to answer questions. I don't want to be your worse case scenario. I don't want Christian to be the reason you go hug your babies. He's not dead. He's very much alive. He's a kid. He's my kid. That 10% of the time I get tired of trying to help you understand. It's exhausting trying to make sure you don't feel uncomfortable or mourn for us. It gets exhausting trying to prove to you that we're all okay and you don't need to feel sorry for us. In that 10% of the time, I don't want to answer anymore questions. I don't want to be tolerant of you. I don't want to understand horrified looks. I don't want to be a teacher or an example or a resilient mom. I just want to be.

Lucky for you, I mostly function in the 90% of peaks and happy, understanding, educating mom-hood. I usually am happy to answer your questions. And when you show your warm heart and you bring your child to Christian to say hello and you speak sweetly to him and ruffle his hair, I am so happy to sit down with you and answer any question you have, whether I'm living in the 10% or the 90% that day.

Today I launched myself out of the valley with this one thought - I'm not the only one. Who do I think I am feeling sorry for myself? Do I think I'm the first person to ever go through this? No! Others have come before me and they all lived through it. So get over it!

I'm over it. I'm in the 90% again. For now.
Wednesday, September 25, 2013

Ending Disney's Guest Assistance Card Program: Thanks, Jerks.

Ending Disney's Guest Assistance Card Program 

Thanks, Jerks.

I learned last week that Disney will be ending their Guest Assistance Card program. This program allowed those with special needs a quicker and easier way to experience the rides at Disneyland and Disney World. It made visiting Disneyland a truly magical place like no other. But the program is ending and will be replaced with something similar to the regular fast pass where guests will be required to sign up for rides and return after a specified time. To read more about it and some of the issues that might arise, please read this article.

Hearing this news made me angry, sad, and all kinds of other emotions. But mostly I'm just heartbroken.

I can't say that I'm surprised by the ending of the Guest Assistance Card program. And here's why:

When we visited Disneyland in Anaheim, California back in July, we had an amazing time. Our son uses a wheelchair and finding things that he can truly experience is, experience. But Disneyland delivered. All of the cast and characters were phenomenal. The rides were accommodating and the wait times were nil for us because we were able to access the handicap entry. Rides were also adapted for us so the whole family could ride at the same time. The whole visit was so above and beyond, I ignored some of what I saw taking place.

It was nagging at me. But I squashed the nagging feeling in an effort to let the good rise and the bad go unacknowledged.

As our day at Disneyland progressed, more and more people flooded the park. Along with that came more and more wheelchairs. At one point I just watched wheelchair after wheelchair moving by. Some pushed by others, some were pushed along by the sitting person's feet. Was it disability day at Disneyland? No. These wheelchairs are rented out by Disneyland as a courtesy at the entrance. You just pay a fee and you get to use one for the day, no matter your ailment.

And then there were the handicap accessible lines. They were filling up, too. I personally witnessed a gentleman in what looked to be his eighties enter a ride with fourteen grandchildren on his Guest Assistance pass. Fourteen able bodied grandchildren.

I saw all kinds of people in the handicap entrance lines. Most of which seemed to have nothing wrong with them. Or groups of people accompanying the one person who may have had a pace maker, fatigue, or even so much as a sneeze. 

Now before you get all How do you know there is no disability?! You can't see everyone's disability! How dare you?! Hold on.

I'm not playing the My Son's Disability is Better Than Your Disability game. And maybe a percentage of those "handicapped" patrons are totally legitimate. And invisible. But legitimate, nonetheless. I'm willing to bet cold, hard cash that a majority of them were not so disabled. But were rather acting that way or borrowing the pass of someone who is disabled so they didn't have to wait in the long lines at Disneyland.

My patience was broken when we exited the Jungle Cruise ride. We had a lovely time, we really did. Christian sat up tall in his wheelchair in the adapted boat with a seat just for him. The handicap accessible line is usually at the exit of every ride for faster loading. So when we exited we could see the completely packed handicap accessible line. Filled with seemingly able bodied people waiting for faster loading. Not a wheelchair in the line. No crutches. No braces.

And they were all staring at us. Staring at my five year old, nonverbal, brain injured son in his wheelchair. All of them. From the handicap line! How ironic is that? At that point in the day, after seeing so much blatant disability fraud I lost my patience. As we passed I yelled, "Take a good look, guys! This is what real disability looks like!" 

I'm not sure they got it. You know, they had a ride to catch.

I, like most people, heard the story of New York socialites paying people with Downs Syndrome to escort them as tour guides so they'd get the Guest Assistance pass. While this is vile and disgusting, I wonder why these socialites didn't just rent a wheelchair and pretend they were disabled. Seems to be what's popular and easier from what I saw. 

I'm not blaming Disney. What were they supposed to do? They could ask for more proof of disability before issuing passes but I'm almost positive there is something about that idea that's illegal or an open door for lawsuits. In fact, Disney isn't legally obligated to offer that much accommodation at all. They do it because they are a good company. They wanted to be inclusive. They wanted all children to be able to experience the magic. They relied on the honesty and goodness of patrons to be telling the truth about needing a wheelchair. About using those passes. About needing those passes.

Sorry Disney, people are jerks.

Now to address the jerks.

Hey, Jerks,

This is not about entitlement. This is not about us getting on rides quicker than anyone else. You're right, we are not owed anything. But don't you see? Don't you see?! I would trade places with you in a heartbeat. I would GLADLY stand in the hot sun for three hours with my son standing next to me and complaining, no, articulating how miserable he was with real, live words. You can have my pass. Take it! Get on that ride faster, by all means. 

Don't you understand?! This is not a perk. This is not a fast pass. This is not us getting over on you. 

You know what this is? This pass means my son smiling for the very first time on a ride. This pass means that he gets a break from struggling every day. He gets to be included. He gets to be like the rest of the kids. We get to be like the rest of the families. We don't feel broken. We don't feel tired. We just get to be happy that day. Don't you see that?

I'm talking to you. You, the one who used your grandpa's pass. You, the one that faked a hurt ankle. You, the one who really didn't need it. You, the one who hired someone with a disability. You, the one who pretended the pass was yours. You, the one who just ruined it for all of us.

And do you know what you're teaching your children when you're abusing these "privileges?" You're teaching them to be jerks just like you. 


Cross posted on Momma Candy.
Tuesday, September 17, 2013

What Christian Does In School

Christian has been a busy boy in school lately!

We're about to take a family trip this weekend but I wanted to share what he's been up to.

I'm sure a lot of people wonder what exactly Christian does in school. I would wonder if I didn't know first hand. And sometimes I still wonder when he's there all day.

He has an amazing aid who loves him to pieces and texts me questions and pictures of Christian.

So here's what Christian does at school:

He makes friends.

He gets visits from Clifford. Not sure if he wants anything to do with him but he matches!

He visits the reading center.

He plays with switches.

And he wins table points!

Of course he does! He's so well behaved. In fact, his aid asked me if he cries. As in, is he able to. I almost choked. This kid used to cry non stop! He's a huge cry baby! But now, he only cries if he's hurt or uncomfortable. He's just a happy little dude now.

I'm sure Christian does a lot of other things, too. He gets multiple therapies at school a week and he is so tired when he gets home. He's had some more seizure activity but I think it might be still from adjusting to all the stimulation and activity at school. He smiles through it. And he has been smiling a lot lately anyway. 

Oh, he also got some new wheels! We got a new van that we plan on modifying as soon as we can. 

We're off to our annual Mexico trip soon. We're ready to put someone's toes in the sand!

Thursday, August 29, 2013

Bowling, Cascarones, and Living a Good Life

We are going on a month into kindergarten and Christian is doing great!

He's making friends and I'm told he has "helpers" now. He also has a curly, little mohawk due to him needing a haircut. I gave him a comb over two weeks ago and his aide told me the kids were sad to see his mohawk missing. Hope they're not sad next week when we cut his hair!

Christian has also been going bowling every Wednesday with Special Olympics. His aide sends me pictures and I think we might join him next Wednesday to see what it's all about.

Christian also got new boots.

Superman, of course.

We worked on school projects. With enough support, Christian did all the finger painting himself. He's very good with his pointer.

And we get smiles like they're nothin' special. But we all know they totally are.

Sunday morning mess.

I brought home Christian's and Lola's first cascarones. I asked Christian if he wanted to bop it on Lola's head to break it open. He immediately gave his eye movement for "yes" and smiled without any hesitation. Even Daddy saw it. That kid knows what he wants and what he wants is to hit his sister on the head with an egg full of confetti.

Confetti was everywhere for days. There may even be some still in his chair.

When I saw the pictures of Christian bowling and I picked him up from school that day I thought - 

He has a good life.

Despite his disabilities and what he'll miss out on, we promise to him we'll make his life the best we possibly can. The sky is the limit for my boy.

We promised it in the beginning and we promise it now. 

One more thing before I go. I had the opportunity to review a really cool fundraising resource! I think if you're a family with a child with special needs, check out my review! Seriously, I wouldn't peddle something I couldn't stand behind. Especially not here. Click here to learn about Teespring.

Monday, August 12, 2013

A Wheelchair Accessible Disneyland: The Happiest Place on Earth!

A Wheelchair Accessible Disneyland

The Happiest Place on Earth

I'm just going to come out and say it.

Disneyland is hands down, undeniably, the happiest place on earth. Especially for families who have children with disabilities.

My son, Christian, uses a wheelchair. So when we decide to go places as a family, we always take into account the maneuvering that's involved. We certainly don't let anything get in our way and we work around challenges and obstacles, but we definitely prefer places like restaurants, zoos, and parks that are handicap accessible. We're a little biased like that.

There is simply no place like Disneyland. And here's three reasons why:


All of the rides in Disneyland are handicap accessible. All of them. There are different levels of accommodations made on specific rides and Disneyland provides a list on their website with every ride and the corresponding degree of accommodation available. Click here for the list.

What does this special accommodation look like? Some of the rides, like the Dumbo ride and the Teacups, offer larger doors that swing open to provide more room to get a rider in and out. 

We were able to transport in and out of the Teacups easily because of the large entry way to the Teacup. He made sounds through the whole ride!
There are also rides that offer full wheelchair accessibility. The Jungle Cruise and It's A Small World are adapted so that Christian can stay in his wheelchair, roll on to a platform and be lowered down into the ride.

Wheelchair Accessible
Wheelchair Accessible

It was like he had his own chariot! It was awesome because the platform sits him high above everyone so he can get a good look at everything.

On the carousel, we were able easily roll him on and off the ride.

wheelchair accessible Disneyland

That blur is Christian on his way off the carousel. See how easy?

There are also separate lines for guests with disabilities. This cuts down on wait times for everyone involved.

The Cast

The "cast" at Disneyland is amazing! And the experience with Christian was beyond my expectations. They would actually go out of their way to make sure we knew a ride was adapted for Christian. A cast member from It's A Small World saw us walking by and called out to us saying, "Would you guys like to ride It's A Small World?" He can ride it in his wheelchair!" 

Something also to mention is the kindness and love they show to all children and guests of Disneyland. Christian was treated no different than any other child. Ariel asked to meet "the prince" when she saw him. He was sleeping so he missed his chance to meet the princess but she went out of her way to come over and meet him. 

Goofy even bent down to say hello to Christian and give his hand a kiss.

We don't know if he liked it, but it was still appreciated by Mom.


The Magic

The magic of Disneyland is still there whether you have a wheelchair, leg braces, a scooter, cane, or crutches. It doesn't go away. The cast of Disneyland is trained to go above and beyond to create the experience for everybody, regardless of ability. Whenever we needed assistance, they were always there to help. It was never a burden. Never. They showed compassion and acceptance and something like that means so much to a mom of a child with special needs. I'm not sure I can really articulate it without crying all over my laptop. 

All I can say is that the magic is still there, with or without a wheelchair, and the memories mean more than anyone at Disneyland will ever know.

Handicap Accessible Disneyland
Life made.

(Cross posting on Momma Candy.)
Friday, August 9, 2013

Christian's First Week of School

Christian started kindergarten on Monday at a new school! And it just so happens that big brother went to this school, too.

Off he goes!

And this is what he looked like when I  picked him up. Tired!

This is his sensory wall at school. He really liked it! One of the squares has bubble wrap on it and I hear he really liked it and used his pointer finger to pop the bubbles.

Here he is in the kindergarten classroom with his aid.

And here he is this morning off to finish up his first week. He was so tired this morning.

The first day of school I had planned to stay with him all day. But by the time we got to lunch it seemed like everyone knew what to do, including Christian. I think it's important they have their own time with him so they can get to know him without my interference. They have to create a bond with him and if I'm always jumping in, it's hard to make that happen.

When I went to leave I asked him if he was ready and he was so vocal about it. Probably saying - Can you leave already? Nobody else has their mom here!

We're all doing well with it. The first couple days I felt like it was such a long day away from me with a full day in kindergarten. I would think throughout the day - I wonder what Christian's doing right now.

For the first day I made a little book about Christian talking about what his favorite things were, about his wheelchair, about his button, and about things he does. The teacher let me read it to the kids so they could learn more about Christian. I didn't want them to be afraid of him. The preschool kids kind of just blindly accept him but as the kids get older they have more questions and fears. So the book helped relate Christian to them but also explain why he does some of the things he does. I'll post the pages soon.

 So it sounds like Christian is really liking school and I can't believe how big he is! Oh yeah, and it has been so much easier getting him back and forth to school! I used to have to load him and Lola up every morning and drive about twenty-five minutes to his school. Then park and unload Christian's wheelchair, Christian, and his grumpy little sister who was still in jammies half the time. We'd have to trudge through the office, the school courtyard, and all the way to the back of the school where his classroom was. Then we had to turn around and do the whole thing again two hours later. 

Now his school is five minutes away. I can hear the morning announcements from my front door. And because I was having trouble finding parking when school pick up and drop off purgatory was taking place, I now just pull up to the side of the school and his awesome aid helps me unload and load the wheelchair into my van and then she takes him into his class! It has been a dream!!! It's the little things that make life easier!

I'm really excited about this year and still in disbelief that he is in kindergarten.

Sunday, August 4, 2013

Happy Birthday, Christian!

Christian is starting school tomorrow! 

I'm so excited about it for him, but also a little nervous because he'll be in full day Kindergarten. He'll have two classrooms - a typical kindergarten classroom and a special needs classroom, kind of like a therapy room. Wait until I show you guys his therapy corner!

We celebrated Christian's birthday by going to Disneyland! I'm going to write up an entire separate post about how handicap accessible Disneyland is and why it's THE BEST place to take your child if they have special needs or if they rock a wheelchair.

But first, let's just acknowledge that Christian turned FIVE!!!

On his actual birthday we had some cake, cupcakes and candles to celebrate.

The best part? Christian got to actually eat some of his cake. He had tastes of frosting and the frosting actually had crumbs of cake in it. There were times when he used to just let it sit on his tongue if something wasn't thin enough to move to the back of his throat on its own. 

But this frosting was a little thick, being peanut butter frosting and all. 

So I pressed a little into his tongue with a fork and let him figure out what to do with it. If anything, I could always go back and rinse it with water or wipe it out.

I turned the other way to serve the rest of the cake.

I turn back to Christian and do you know this kid cleared the whole thing!!!!

And so he gets more!!!

But only a little bit at a time. He'll let us know when he can't handle it so I just follow his lead. Apparently, he was ready to handle some peanut butter frosting with chocolate cake crumbs. 

And just for good measure, we celebrated again with frosting and sprinkles in speech therapy the next day.

Spoiled kid.

Happy Birthday, Christian!

And, just in case I didn't post the pictures from his celebration of life earlier July, here they are! We took him to pizza where he rode his very first carousel. 

The buttons at these pizza places where they have those ticket games are perfect! They're just like talker buttons. 

Go Christian! 
Friday, July 26, 2013

Frazier Water Protocol Update: I love this program!

July has been such a busy month!
I knew it would be. Between July and the beginning of August we have two birthdays and two kids going back to school. And one of those kids is Christian!
But before he starts Kindergarten, he has a birthday coming up. I'll let you all in on his birthday trip we're heading out for tomorrow in a later post. For now, I wanted to update on the Frazier Water Protocol we started with him about six weeks ago.
I love this program!
About three times a day I clean his mouth with a toothbrush. Teeth, inside of cheeks, roof of mouth, tongue, and lips. Then I follow it up with about 3mL of water by mouth with a tiny syringe. The whole thing is supposed to promote better oral hygiene and stronger swallowing, thus reducing the risk for aspiration and/or pneumonia.
And it does!
Christian's mouth was starting to become a problem. I felt like brushing his teeth alone was not helping and with him being a mouth breather with his mouth constantly open, his mouth would dry up. Saliva would actually dry over his teeth and it was like I needed a power washer to get it off! I was beginning to wonder if this was going to be a problem because what I was doing didn't seem to be helping.
Enter Frazier Water Protocol.
There was a difference in his mouth within the first few days.
This is what his mouth looked like before. A mess.
Pretty, right?
Very dry and you can hardly see his teeth. This was what it looked like every morning.
This is after we started the program.
He has teeth!
Over the years Christian's gums started to engulf his teeth. The roof of his mouth is different than children his age and his teeth kind of sit in his gums. When his first top teeth came in, he had a big gap between them. The gap disappeared when his gums enlarged. This, I'm assuming, is because he doesn't eat by mouth and because his mouth is always open so every thing dries over.
But after six weeks of the water program, look who's back!

It's the gap!
His mouth looks so much better! But I have to do the water program AT LEAST three times a day. If I do it less, which has happened because he'll fall asleep early or something, I can see the difference.
Not only has the program vastly improved his oral health, but his swallow is so much faster! He used to pool all of the liquid at the back of his throat and give one big swallow. But now he will swallow right away. And fast. He has also shown more interest in tasting food and he is clearly more motivated with food. His favorite is a chocolate peanut butter smoothie because, of course, it is.
Here he is in action with his water:
If he swallows better, his risk of aspiration is lower. He has never aspirated before that we know of but as his anatomy grows and changes, it's always a possibility. So we're working on strengthening that swallow reflex as he grows.
I have our fabulous speech therapist, Randi, to thank for suggesting this program. It has been amazing!

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