It's Been A While . . .

We’re back! Life has been quite the adventure these past few months. We’ve been so busy that the little bits of free time we were lucky to get have been well spent catching some zzz’s. Things are finally starting to slow down and I found some time to start writing again. So, what’s kept us so busy? First there’s the usual stuff, things like doctor appointments, therapy and visiting family. We also have some really exciting news to share, which began a HUGE family project. I’ll get more into this later, but first an update on the little guy.

We were bored one day and decided to do a Super Hero photo shoot

Earlier this year we lost two of Bryce’s Early Intervention (EI) therapists. We were so sad to say goodbye, both were absolutely amazing! As sad as it was to see them go, we are excited for them as they begin new adventures. Their leaving left Bryce with no Occupational or Speech Therapy, both very important for him to continue. We started taking him to Outpatient Therapy to receive those services, something we planned on doing when he turns three and graduates the EI program. I just have to say his new therapists are every bit as amazing as his old ones.

We take Bryce to therapy every other week, on separate days (doing speech and OT on the same day would be overwhelming for him . . . and me). His new OT really knows how to push Bryce. He works so hard each session that he ends up falling asleep during the last 10 minutes. I have seen Bryce improve so much since we started working with the new OT. He is keeping both hands open more often while awake, he can raise his right arm all the way up (with a little help), and he has even started trying to support himself during some of the exercises. It may not sound like much, but “by small and simple things are great things brought to pass.” (Alma 37:6).

I’ve had people ask why Bryce is in Speech Therapy if he’s not likely to talk. My answer is that Speech Therapy is about so much more than just helping someone talk, it’s about helping someone communicate. Bryce’s new therapist is excellent at finding his strengths and using them to teach him how to communicate. Currently we are working on two different methods. The first is by having him press a button. For example, as soon as he pushes the button, music will start playing. The other way is by having Bryce vocalize. For example, I will leave the room and return as soon as Bryce makes any vocalization. He still has a long way to go, but he has gotten more consistent since we started seeing the new therapist.

First time Bryce met Grandma and Grandpa Naylor

A few months ago we increased Bryce’s diet to a 4:1 ratio. This is the highest ratio he will be on. Before the final increase, the diet really hadn’t done much to help with seizures. The doctor working with us said that if the final increase also didn’t do much, we should consider taking him off it. Jus and I both felt that we wouldn’t really see any change to Bryce’s seizures, and we didn’t for the first few weeks after the increase. However, it finally kicked in and what a difference it made! He still wasn’t seizure free, but he was pretty darn close! He had no more than 10 seizures a day. His tonic seizures completely stopped and his spasms were less than three minutes long. This has been the biggest relief from seizures Bryce has ever had and I can’t even begin to express how absolutely wonderful it was!

Unfortunately, all good things come to an end. After a little over two months of minimal seizures, they came back with a vengeance. His tonic seizures started again and his spasms not only increased in number, they also started lasting 15 to 20 minutes. He couldn’t find relief from them, especially at night. The spasms would wake him every hour. After they stopped he just wanted to be held. If I laid him down in bed too soon he would wake up and look at me, pleading not to be put down.

Luckily we were able to see his neurologist within a few days. Bryce’s meds were increased, which has helped so far. He is still having tonic seizures, but fewer spasms that last no more than 10 minutes. So, I guess I can say he’s back to his normal daily seizure amount before the diet increase.

Grandma Naylor with Bryce and cousin Jason

We’ve also been able to visit family many times during the past few months. In fact, we’ve made at least five trips since June to see them. Each trip was fun (some more than others) in their own way, but I am going to focus mostly on the last two visits we made. At the beginning of August, we went to a family reunion. We were able to see most of Justin’s aunts and uncles, and a whole bunch of cousins (on his mother’s side). However, what made the reunion extra special was that we were able to spend time with Grandma and Grandpa Naylor.

The first night we were there, I was lucky enough to spend a little bit of time alone with Grandma. We walked arm-in-arm around the campground talking about whatever came to our minds while I pulled her tank of oxygen behind us. We joked about what a nuisance it was and how difficult it was to steer. We talked about Bryce and how well he’s doing. She told me stories about many of her other great-grandchildren. We stopped for a while on a bridge over a little stream to watch some squirrels chasing each other. She reminisced about a previous reunion held in that same spot and expressed how much she loved watching the kids slide down the banks to play in the stream below. One thing I’ve learned about Grandma is that she loved being with her family more than anything.

At the time we didn’t know it, but Grandma was called back home to Heavenly Father less than a week later. I feel so honored and blessed to be a part of her family. She truly is an elect lady. Although I’ve only known her for as long as Jus and I have been married, I came to love her every bit as much as my own grandmothers. I will miss visiting with her after Bryce’s neurology appointments. I will miss her food, because she loved to feed us every time we stopped by. I will miss the way she always had to wrap Bryce up in a blanket because he was cold. I will miss the way she insisted we needed more Tupperware. Thank you for letting me be a part of your family. Till we meet again Grandma.

Last picture with Grandma Naylor

I am sure you are eager to read about our exciting news now. Unfortunately, I like cliffhangers so you'll have to wait ‘til next week.