If a year ago you would have told us we would be where we are right now, I wouldn’t have believed you. Even six months ago, I would’ve questioned it. Six months ago, Mason woke up everyday able to get around. He had pain, and some days where you could tell he hurt a lot. He still was able to walk, and get around.
In april, Mason started complaining about intense pain in his legs and sometimes, (most of the time now) his back. He won’t walk, or get up. We help him do everything he needs to do. Now don’t get me wrong, some days, you could look at him and not have a clue that he couldn’t walk a day ago.
We have been to countless doctors appointments to try and understand how or why he declined so suddenly. We have gotten AFO braces, but they seem to make his back worse. We have done physical therapy, and we started aquatic therapy. We have been to his chiropractor, to neurology, rheumatology, genetics and of course our beloved orthopedic doctor, Dr. Kerwyn Jones. He has been a major part of Masons journey, and we are super thankful for him. Our next step is to head to a physiatrist. Which I had never heard of, and was sure Dr. Jones at first was crazy sending us to a podiatrist. ha. This new doctor, is similar to an orthopedic doctor, but focuses more of management as opposed to surgical.
Genetics wants us to do an extensive amount of genetic testing, to make sure we aren’t missing anything. Either something secondary to EDS, or EDS being secondary to something else. However it’s very unknown obviously if there is anything else. Genetic testing unfortunately is not covered by most insurances. Sadly, healthcare in the US makes it so you have to choose between substantial medical debt, or tests and treatments etc. It’s sad. We haven’t decided yet on what we will do, but we have want to meet with this new doctor before we decide. Having Dr.Jones to help us problem solve and prioritize helps.
In our attempt to find a way to help Mason get around the house. To find the desire to go outside and exert himself some, or to get through a school day and school week. We found out about how helpful a service dog can be. They train these amazing animals to be able to help him walk, by giving him support. Turn on lights for him, get snacks when he can’t get up. To alert us when he wakes up in the night and he can’t walk and needs to get to the bathroom. At this point, we use a baby monitor and he texts us from his iPod. Which it’s not a foolproof plan. Don’t misunderstand, this isn’t every night. This only happens on the bad days, the days where he’s not moved much. There are some nights though, that he goes to bed just fine, and wakes up and can’t get up. Having the security of his dog would change his life. Give him to need to go outside, give him the courage to do more without fear that he will struggle. Help him view it as fun, and not potentially putting him in a flare up.
It’s easy to think that we should just get a wheelchair, and help him like that. However, the more he is in the wheelchair, the less physical activity he gets. The more bad days he has, the more he uses it. Then eventually it may be easier all together to stay in it. Now we know this may be a future possibility for him, but at only 8, we are not prepared to head down that path. We are doing everything we can to avoid that.
He struggles now to get outside, some of it I know is anxiety. Typically he will get outside and it won’t be long until he’s pale, and in pain. In his mind, outside, and physical activity puts him in so much pain. I’m sure he thinks ‘why do it if it just means I’m going to be miserable?” We can push him to get out, but anyone who has children knows that isn’t always easy. Also, I don’t blame him. If I knew getting outside, or going to the park, or doing things like that, would make me feel the way he does, I wouldn’t do it either.
This is where we think a service dog would help, ease some of those worries. Along with helping him physically stand up, move around, and comfort him.
We have started the process of fundraising, and applications for a service dog. We have one prospect, a dog named Ada. She’s in need of a new handler, and she’s already partially trained to Masons needs. She is also the type of dog Mason will need. Due to his allergies, and his physical needs from the dog, he needs a very large dog. A bernedoodle, is ideal. It just so happens that Ada is a bernedoodle.
This is where we are reaching out and asking for help from our friends and family. We have set up a GoFundMe, and looking into all of our options for fundraising locally to help raise the money. I’m going to share our GoFundMe here.
Mason drew this picture of himself and his service dog, even included his dogs vest. I love this picture, because look at that smile on his face of his version of himself.
If you’re not able to help by donating, that’s ok. If you wouldn’t mind sharing his story, and helping us spread the word of what we need, we would be so grateful.
Thank you for everything, and as always,
until next time,