A week or so ago Nick and I were talking and he said “I’m not here to save the world, it’s just my journey”. We do have a surprising amount of conversations that bring out these wonderful bits of wisdom! Of course I shared this on the Team Nicholas Facebook page and elsewhere. Nick was even quoted elsewhere. It was sweet.
When I asked him about it days later he said. “I didn’t say that first mom. I heard it on Pokemon. It just fit.” I think it’s still amazing that he remembered it and related it to his experience and find it so amusing that he gets this kind of stuff from Pokemon… then again didn’t a former presidential candidate quote a Pokemon song?
Still Nicks journey has been a little roller coasterish these last few weeks. He’s had some smaller complications this time around that have made it even harder emotionally than it has been in the past. Nick may not be saving the world and he may not need to but sharing his journey has helped others and I hope it continues to! I’ve been posting a lot of updates on the Team Nicholas Facebook page and less here… Here’s a recap for those who are interested and are not on FB!
Nick is mostly feeling good. Therapy is hard. Standing is torture. Stillness seems to work well although muscle spasms started which just means more meds that taste horrible.
We checked his struts and all but one were at the right number. Still not doing turns yet but we should still check them. Nicks leg looked very swollen to me. This fixator is a lot for his leg! I’ll post a pic when Nick is more comfortable. Tomorrow I think we could wash him and take off all the sponges around the pins and wires. That could be a little crazy since he can’t stand standing or sitting with his leg hanging. We’ll figure it out tomorrow night I suppose when the other kids are asleep.
I think sharing our attention with the siblings was a little hard for him and a little crazy for us. We’re all pretty good considering. Tonight I get to sleep through (as long as other three kids sleep) and Steven wakes up to give Nick his pain meds. No more important job in the world.
The team is looking good tonight. Nick had home instruction with is teacher and he did great. He was happier than I have seen him since before surgery!! Who knew that would perk him up. His teacher is really wonderful! The fact that she applied to be a home instructor to do this for Nicholas says it all! Then we had a delicious dinner delivered by a friend! Wow. Best day yet. 2nd leg washing is tonight but I will be thrilled if it’s not a scream fest like last night. Nick was really scared of the sponges and such being removed. We got through it and his leg looked great! Well it looked great to us. I am sure it would still frighten most people!
January 10 at 7:30pm Overall Nick’s leg is doing a great job growing. Just having an issue where a wedge was just out of his bone to correct the bend. Wedge is opening on one end and closing on one end but the closing end is a little too close. Bone pressing on bone is not a good feeling! If we don’t do turns he’s fine! Walking and such. Nick and I even got him out of the tub and back to the bed last night without Stevens help! Hoping a few more turns on our amended schedule will give his bone the room it needs and we’ll be back on track! Will update after we do some. Yesterday was a long day! January 17 at 9:42am
Can’t sleep! Nicks weird pain is likely nerve pain. All of a sudden he started explaining it the way Dr. Standard’s PA Allison said he would if it was nerve pain. Of course this is after 11pm so now I wait till morning and call right away and hope this won’t require surgery to fix. Steven doesn’t even know because Nick kicked him out of our bed because snuggles from Mommy help and Dad’s just too big. Poor Steve has Bess whose been screaming on and off all night. I wish the snuggles really did help. Truth is nothing does. Nothing worse than not being able to take care of Nicks pain. Last night he watched the Giants with Steven and said he’s going to be a football player and show the world that even with one leg shorter than the other you can be a great football player. He said “I’ve handled all this” gesturing toward his leg “and more of course I’ll be a great football player”. Sadly tonight in the course of this on and off strange pain, he said “this is too much for me mom”. Laying next to this big hunk of metal on his leg I can’t imagine what its really like for him. Right now it IS too much.
Things have been going better physically for Nicholas while emotionally it’s been hard. He’s feeling lonely, missing friends, sad for what he’s missing and wishing he didn’t have to do this at all. All normal I know and we talked lots about it and he has a friend coming over tomorrow. This is a really hard process and it is the biggest surgery he’s had. I try telling him how normal it is to feel how he does and remind him of others who have struggles and think they can’t do it but then they do. I know how encourage him to let his feelings out, I know how to pep talk when he’s ready and how to distract when he’s in pain. It just hurts to know he’s suffering. No matter how good I am at helping in the moment. Right now I will put it all out of my mind so we can work on his rainforest project. Thankfully distraction works on me too!
Hard, crazy pain afternoon. Seems like a little bit of Nicks bone consolidated too soon. Steven turned struts and then a half hour later Nick bent his leg, heard a snap and suffered some of the worst pain ever for the 1/2 hour it took for the pain meds to work. Worst thing to hear your child say is “please make it stop” and not being able to. He’s pain free and woozy from meds. He needs me to stay close cause he’s afraid he’ll bump his head from woozyness. He’s actually kind of funny now. We gave him the pain medicine closer together because it was so bad. He’s not been needing the pain meds much at all. It was a shock for Sure. Hoping this never happens again!
Nicks grown 4cm of new bone in 6 weeks! We just got back from a great appointment with Dr.Standard. All is well!
t’s a pin site infection! and it’s causing some of the pain. A very common thing for leg lengthening but it is crazy because yesterday when he had a headache and was emotional I thought INFECTION but all of his pinsites looked fine and none hurt. The signs are redness, tenderness and drainage… none of those were there but the headache was and thats how his symptoms started in the past. Tonight there was redness, tenderness and drainage. I started the antibiotic at 8pm and thank goodness we get it in the powder form so we can mix it ourselves if need arises. Now time to set the alarm for the next dose.
Monday’s visit to Sinai went great. Nick’s antibiotic seems to be working well. He is no longer in pain!!! New bone looks great. In two weeks we may stop doing turns since we’ll hit the 6cm goal. Nick thinks that’s enough and what he says goes!