Writing less these days. Things seem to be moving along and progressing as they should. After my last post Nick started to turn a corner. While I was out on Saturday (doing an interview for a school project that was totally amazing and reminded me why I love school despite how hard it is right now) Nicholas decided to try getting up on his own and now he can. His leg is still weak but he moves it with his arm and he is not trapped in bed waiting for someone to help him out anymore. That is huge morale wise.
Then we got a visit from a wonderful gal named Eden and her family. Eden has a precice in her femur just like Nick but is ahead of Nick. In fact she finished the lengthening portion of her surgery this week! #edenstrong!!! Her mom has been such a great support and information person for me. It makes a huge difference to be able to reach out with questions to a mom who has been there. It’s been a while since I wasn’t the mom in the know and I feel so much gratitude for this family sharing their journey with me and a deeper love of what this blog and the support group offers to others.
I loved seeing Eden and feeling like everything Nick is going through is normal and will get better. I think Nick was pretty impressed and heartened to see Eden lifting her leg on her own!!! Like a champ really! He’s been in a pretty up mood ever since. Eden also gave him this cool putty as a gift. It has had him mesmerized. It’s fun to see my screen loving boy totally into some tactile play! We all need more of that in our lives. Connecting with families on the same journey is huge! Seeing Eden get around on her crutches like a pro really gives me hope that Nick will be on the move soon, and even if it is not soon, it’s ok. I think we both feel like he will get there.
Eden’s parents also shared a cool app with me called Dosecast. Steven and I can put it on our phones and have reminders for when to lengthen and when to give pain medicine. I think I will use it for vitamin reminders too. I didn’t think I would need it for lengthening reminders till yesterday I forgot the morning lengthening. I realized by 10am so it was fine but still really surprising to me. The app will be a godsend! In other news we’ve been yo-yoing with the pain medicine a bit. Nick was not needing it during the day and then the lengthening has seemed to start to hurt some. Then pt got really hard and he needed pain medicine for that. It’s pretty normal actually. Because of the eight plate Nick’s knee seems not to like bending at all but because of the lengthening extension is our focus so I am trying not to stress that. Then last night Nicholas started feeling spasms. He actually said to me “Mom I know enough medical terminology to know that I am having spasms”. So I gave him valium for that. And then he could not fall asleep so we chatted about going back to school and lots of other things.
Nick’s sleeping through the night again but I am not. Our dog is sick so I have been sleeping on the couch with him. I’ve only had a few nights in my own bed since surgery and I am realizing the couch is killing my back and not sleeping through the night is making my brain foggy. It’s great that the kids are on spring break this week so our days are pretty laid back. Although I am too distracted to get much school work done during the day. Nick is not enjoying his school work either. I am trying not to dread what’s next. In general I know that lengthening is going to get harder as Nick’s leg stretches. The pain meds are doing their job so far. I just hope this continues.
Incisions are healing well though some are annoying Nick. More normal stuff! They all look pretty good. Walking around is going well with the walker. Stairs are still hard with crutches. Appetite is still not what it was but between the pain meds and Nick being less active I think that’s pretty normal too. “Normal” one of my most hated words is getting used a whole lot in this post.
Friday I have a small surgery to excise an area where I had a new growth removed that came back abnormal (here I would totally prefer the word normal). I wish I was as brave as Nick or even a tiny percentage as brave as Nick, but the thought of getting stitches in my arm makes me anxious. Monday we go back to Baltimore for PT, a new brace for Nick and a check up. I am dying to see that this magnet is doing it’s job!!! The discomfort Nick feels is a comfort to me in that regard. It makes me feel like something is actually happening!
I will see if Nick would like to do a lengthening video so you all can check it out. It’s pretty amazing. Although you can’t see much happening at all. It makes a noise and that’s about it.
Please send a good thought or a prayer to our friend Nathan who has fibular hemimelia too and is having surgery today! He’s getting an external fixator. It’s not an easy journey but he is a brave and strong kid with an awesome family. The are all in my heart and thoughts today! #teamnathan