This boy melts my heart! Colby had a 101 fever and pneumonia in this picture but he is still smiling.
I just realized that most of my posts have been set to private! UGH! I swear sometimes having a blog is a pain!
We’ve had a crazy year…as usual but I wanted to share this awesome ceiling lift that we had installed a few months ago. Colby is still only 50 lbs but he’s going to get bigger and my back is feeling it. I wanted to get the lift installed before I hurt myself.
We started the process in May, received insurance approval in June but had to wait for proof that insurance would cover the whole thing before the company would install it. I don’t blame them. If I were installing a $25,000 ceiling lift I would want to know it was going to be completely paid for before ordering it.
I also didn’t want to end up with a $10,000 bill if they only ended up paying out some of the cost.
In the end it was completely covered and installation began at the end of August. The headers were finally finished up this week so it’s been a bit of a process.
I had a mom ask why we didn’t just get a Hoyer lift as they are much more affordable. We have so much medical equipment that finding more space to put something like that just isn’t a good option. It also wouldn’t allow me to get him in and out of the bathtub like his ceiling lift does.
Colby thinks it’s a fun roller coaster but he does wish it had a turbo boost.
The only thing I can say bad about it is that the headers for Colby’s bathroom and bedroom had to be removed to allow the track system to go through. I knew that was going to happen but John didn’t quite understand what that entailed. It means that the bathroom is not totally enclosed at the top. My sister in law said it reminded her of being back in grade school with the bathroom stalls. Either way it’s a small thing to worry about because the end results are so amazing.
I am truly thankful that we were able to have this installed and what it means for my physical well being going forward.
Forbrain – Sound For Life Ltd has generously sent us their Forbrain headphone set to review. I cannot even begin to tell you how excited I was to be selected for this review! I literally begged to try this out for a couple of reasons! If you’ve been following our chaos for any amount of time you know that Colby is non verbal. He says yeah and uh-uh sometimes but he usually talks by looking at something with his eyes or if he’s really in a cooperative mood he might actually use his speech device computer. He thinks I can read his mind and that is typically good enough for him. The doctors aren’t really sure why he doesn’t talk. We know he can say words and that he understands what is being said to him. He has said love you, airplane, Buzz and war along with a few words I won’t mention thanks to all the trash talking John and Colby do while playing video games together. Forbrain provides technology for speech and language difficulties and it seemed like a perfect fit for Colby.
Be sure and click on the banner below to see what the other reviewers had to say about their experiences with Forbrain.
Eight years is a long time.
Eight years and one day ago I did not know kids could have strokes.
Eight years and one day ago I did not know how strong Colby was.
Eight years and one day ago I thought I knew what love was.
Eight years and one day ago I had no idea what the word survivor meant.
Eight years ago Colby showed us what survivor means.
Eight years ago I learned it was possible to have your heart break and keep beating.
Eight years ago Colby decided to stay here with us.
We’ve all learned a lot in the last eight years, more than I could ever put into one blog post. Sometime during the last year things became normal again. We bought a house and moved. Colby has settled into his routine. We’ve settled in and turned a house into our home. Things have become easier for the moment. Seizures aren’t as scary anymore. Colby’s heart rate has improved thanks to more frequent lab work. We’ve tried new formula and medicines. We scrapped the old ones. Colby showed us that he really didn’t need one of his antidepressants by raging for almost two weeks straight. He didn’t sleep for three days after that med increase. I figured once he got the extra worked out of his system he’d go back to his regular dose, that was three months ago. A slight increase in his seizure med has helped with his mood stability. Good thing it works on both issues for him. He got a new diagnosis, a new specialist and we found out his aorta is a little enlarged but not as enlarged as we were first told.
Colby has grown a lot and gained a little bit of weight. It’s harder to hold him on my lap and there have been times this last year I’ve had to tell him I can’t hold him anymore because my back hurts to much. As much as I didn’t want to do it, I called and got a quote on a ceiling lift. Today I gave the quote to Colby’s doctor to submit to insurance. Hopefully they will approve it.
Looking back over my past Survivor Day posts I think it’s fair to say Colby and our entire family has come a long way. In case you’d like to see here are years 2 through 7.
Happy Survivor Day buddy, we love you!
Colby, Colby, Colby. I love you buddy. We’ve had more than enough excitement in our lives, don’t you think? I took Colby down to Salt Lake City on Monday morning to have his Nissen Fundoplication. It’s a laparoscopic surgery that is fairly routine even in kids. Except when it isn’t.
During the procedure Colby’s left lung collapsed. The surgeon who has done several surgeries on Colby and knows his history fairly well came out to tell me how it went and led with this “In 1% of these procedures….” followed by a pause where I chimed in with “Bring it. What happened?” I knew it wasn’t life threatening or he wouldn’t have been talking to me in the parent waiting room so I figured it was safe to joke a little. It was. Colby had 7 incisions from the procedure and 1 from the chest tube he was lucky enough to have for 24 hours.
Chest tubes are not very fun. At least that’s what I was able to gather from Colby and his very uncomfortable night that night. Poor kid had a seizure, and lots of morphine. The chest tube was pulled the next day but not before the nurse practitioner made me really mad and argued with two surgeons that Colby should not be allowed to go home because she messed up the way the orders were written. That’s a very long story that I’m still trying to resolve.
We came home the next day and the last week was crazy painful for him. His intestines ground to a halt and I had to pull out some heavy duty laxatives before they decided to start back up yesterday. We missed church and I’m pretty sure that given the situation people are thankful we did.
Today a friend came over and worked on Colby with some energy work and taught me how to do some of it for him. He was laughing this afternoon and smiling again. There was a lot of trapped fear in that boy that was released today and he is so much happier. Have any of you ever done any energy work? I’d love to hear about it. I’m working on becoming Emotion Code certified and eventually Body Code certified. I’ve seen amazing things happen using these techniques and I’m excited about the journey I’m on.
Colby goes back to school tomorrow and I’m excited for a small break after the craziness of last week.