Breakthrough

Nicholas is having some breakthrough pain in his foot. It has reminded me of a conversation I had with Allison, Dr. Standard’s PA, in the fall about what we could do about Nick’s foot and she mentioned how painful foot surgery it. She was right. She’s a lot like Dr. Standard; calm, kind, smart and pretty much right about stuff. I was going to write “right about shit” but Nick does not like profanity. He’s not likely to read this so maybe shit is ok to share here.

Shit as a topic brings me back to the pain he is having. We had spread his pain medicine dose to every 6 hour instead of 4. Then down to 5 because of pain and now we are going back to 4 to see if the pain goes away. If it does not I will email Allison to let her know Nick’s pain is getting worse instead of better. If it does get better at least we know it’s spreading the doses that made the difference and things are not worse than they were. I am also wondering if we should go to 1 pill every 4 hours instead of 2 every 6. Or one and a half ever 4.

If things get better at 4 we might still spread the doses a bit if the pain is manageable. Nick actually thinks the pain is spasms so we are giving him valium as well. I can’t help but want him to be less medicated if possible but I certainly wont let him suffer. Some intermittent pain is not equal to suffering IMO.  I am encouraging Nick to use distraction as much as possible. Right now his little bro is helping with that.

This seems to sound more confusing than it is. I had just written to Nick’s teachers to say I he could start doing school work next week. Seeing as he was less medicated I thought he had enough mental clarity to do so. If he’s back to 2 pills every 4 hours I don’t think it will work.

It really does not pay to stress school work right now, Nick’s teachers are not pushing and really taking their cue from us.

The other breakthrough of the moment is that I am taking a bit of a break from Facebook. I am not deleting my account or anything but I took it off my phone and wont be checking with regularity. This blogs updates will still post there so you can still get updates on Nick there if that’s how you do. My email and cell number are listed on my account so actual friends can reach out if they so desire. With changes to my school schedule coming up I really need to reconsider how I use my time and I also want to be more mindful in terms of how I connect with people. Simply put this breakthrough is about more than taking a break but I will leave it at that.

Nick does not want to leave Sinai.

Another surgery done. Yesterday Dr. Standard and company put an eight plate in Nicks’s knee, took out the 7 screw plate from the summer and took care of some adhesions that were causing pain for Nick from time to time. I was super happy Nick had nurse Harriet with him. The sight of her is such a comfort to me and Chris Fisher was in surgery with him as well.

Having so many familiar and trusted people taking care of my boy is wonderful. Chris walked me out of the or when I left Nick asleep. It was nice that he did because I might have cried had I walked alone. Chatting a little was a nice distraction. We talked about how violent orthopedic surgery actually is and the fact that the equipment used is similar to what could be found out in our tool shed. Nick use to ask for details on what Dr. Standard was going to do. I never asked for too much info but I am sometimes curious. I imagine it being loud in the or with drills and such going. I guess it’s pretty gross to consider so I’ll stop now.

We are having a pretty nice morning. I am kind of leaning Nick’s way and not wanting to go home. Except I really, really miss my other three children. Other than that we could stay. We’ve got nurses making sure Nick is comfortable and ok and a lovely lunch menu to choose from and it’s quiet and there’s cable and we even slept pretty well last night.

Maybe we are too good at making the most of it? Still we’ve got to go. Nicholas does not need to stay. His pain is under control and his leg looks good (according to Brian one of Dr. Standards new residents). Brian is new to us but may not be terribly new. Hard to tell. He was great with Nick and we had an interesting chat about zombies which has given me a whole new perspective on them and the fact that they are not as altogether impossible as I had thought they were. Despite his sharing that unfortunate zombie info with me I liked him a lot.

Nicholas had asked Dr. Standard Thursday if he would have to do physical therapy and walk right away and Dr. Standard said no so we’re good to go and Nick was so relieved. Dr. S said Nick can continue to do things his own way at his own pace. It is great that Nick has that control and Dr. S knows him enough to know he’ll get moving when he’s ready.

We and a brief visit from a family with an adorable little 15month old in his first fixator. It was nice to get to chat with them. We had met over the summer during the arm break/leg healing phase. I remember so well when Nick was a baby and we were here for his first surgery. Nothing since has ever been as hard as that. I hope that talking to Nick and I helped some. It’s hard to be at the beginning but that little boy was so beautiful and eager to get down and move around! I am sure he’ll do great and god willing his mom and dad will look back like I do and feel that the hardest part is behind them too. The light at the end of the tunnel gets brighter with each surgery behind us and thankfully today it doesn’t feel like an oncoming train (thanks Gretchen for that reference from so many years ago on the yahoo group it’s so fitting I never forget it or the support you and so many others gave me).

Top Speed Nick – Full Speed Ahead

Nicholas is back to his usual speedy and rather happy self.  He still has his emotional moments but thankfully they are not eight plate related these days. He pretty much recovered as Dr. Standard said he would. Boy do I like that thinks happen as he says they will.

Nicholas will be finishing up kindergarten in the next few weeks. I can not believe how fast it has gone and how much he has learned. I still have had  my worried though. With these crazy hot days Nicholas has started wearing shorts. I  have to say I was worried that the kids might say something about his scars and the fact that his leg is smaller but nothing has happened. And it did not occur to Nicholas that they might (thank goodness I keep these worries to myself… at least till he can read the blog LOL). If only all of life could be that way. Still I am grateful that he has not been teased or anything this year despite his fixator, cast ect. I am so proud of how well he has done in kindergarten and of the boy he has become. His teachers and principle always have the most wonderful things to say about him. His gym teacher actually told me that I am lucky that he is my son and lucky to have him in my family! She is retiring this year and said that she is sad that she will not get to see him grow up. I’ll have to give her the blog address to keep up with him.

Well our next project may just be a video but I’ll post an update on that soon. Eye of the Tiger is one of Nick’s favorites and he has his own moves to go with it. What better way to showcase how unstop-able kids with fh are than a video of my guy!

Update

Wow so much time has gone by since I last wrote. Nicholas is doing great. Some small ups and downs but mostly wonderful. He received his 3rd perfect report card and earned a seal cent (which is sort of like being student of the month at his school). Really we could not be prouder of him.

Today I am going into his school to have lunch with him. He is so excited and I am savoring it since I know one day having me come into his school will not be the hi-light of his week. After I am taking him to get a pre-op physical. Next week Dr. Standard will be putting an eight plate in his knee. It is an outpatient procedure that I have written about before. From what I have heard from other parents it should not keep him down what so ever. I’ll post x-rays and details next week.

Nick will also be having a super knee surgery in the fall. This is big compared to the eight plate but small compared to months in the fixator. Four days in the hospital, six weeks recovery, physical therapy and a whole new experience for us. When we told him it would be coming up he asked if Dr. Standard could make other parts of him super too and when he talks to people about it he often tells then that Dr. Standard will put a monkey on his knee (since he drew one after the last surgery).

We knew the super knee would be in the next 2 years and we are opting for fall because I really want Nicholas to have a fun summer. He is doing so well in school that I would rather have him miss a week or so and still have an awesome summer rather than spend the summer recovering. Plus baby number 4 is coming in June so we really did not want to do surgery and newborn together (been there done that with first fixator).

So life is good and I am appreciating where we’re at right now. Time to go to lunch with my boy!

ICLL Testimonial is on line at http://www.limblength.org/body_rubin.cfm?id=3659

http://www.limblength.org/body_rubin.cfm?id=3659

I wrote it over the summer so of course things are different now but we are just as grateful to be able to take Nicholas to Dr. Standard as ever! His cast will hopefully come off on the 23rd of this month. Although he really is doing great in it. He has not complained about itchiness since the first few days and he has had no pain what so ever. He is all over the place. We even caught him on a friends top bunk! Of course we did not let him get down on his own but really I never thought he would even try to climb up in the big blue cast.

Apparently the fixator did not effect his school work one bit!

I had Nicholas’ parent teacher conference this week and it was better than I even could have hoped. Nicholas received the highest grade possible in EVERYTHING. Crazy! You would think missing 6 full days and some half days and having the fixator and cast might have an effect on his grades but it did not. His teacher seems really delighted with him. She ever said “he’s the kind of kid you’d like to take home” and “you’ve done a great job raising him”. Really it touched me so much. After 20 or so years of teaching I would not think she would want to take any kids home but she is amazing. I am so grateful that he has her. I had so much anxiety sending him to a new school in the fixator and it has all been fine. She even told me that none of the kids ever complained about the accommodations they had to make for Nicholas. They always had to go in the building last because he took longer and it took the class longer to get anywhere but still there was not one negative thing said about him or to him (so far as we know). I think we do not always give kids enough credit. They are so much more open and accepting than many adults are. Maybe 5 is just a good age. I don’t know. I just hope Nicholas continues to love school and have positive experiences.

After I came home I told him that his teacher said he did great but the best thing she said was that he always tries his best ( in fact she said he is determined). I made sure that he knew that is what is most important and not all the A’s. I am sure every report card wont be perfect and I just don’t want to set him up to feel bad about himself down the road. I would be proud of him no matter what because he has done his best despite some pretty distracting stuff going on. My boy amazes me everyday!