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!

My little parade leader!

Today was a great day. I got to see Nicholas and Charlotte in their school parades and Nicholas was the leader of his! It really was so adorable and so totally awesome to watch him walking. He used the walker even though he really can walk fine without it but he did not mind. His teacher had to tell him to slow down. I kept hearing kids say “hay look it’s Mario” or “did you see Mario” and “I want to see Mario”. I am so glad I ordered their costumes so long ago! Really it was overwhelming to see how well he is doing. I was just so grateful that he had the fixator off even though he could have done it I know it would have been harder or he might have needed the wheelchair. It is just one week after his fixator was removed.

Altogether a great day for the most proud mommy in the world!

Parade Leader Nicholas and his teacher.
Parade Leader Nicholas and his teacher.

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Family and Fixator First

Something has been on my mind from time to time since Nicholas had his fixator put on back in March. I have felt very often that people who have not had a child in a fixator have no clue what this has been like for Nicholas and for us as a family. Just like I have no clue what it is like to have a child with a life threatening disease or many many other things families have to go through that we have not. And while things have gone so very well and I feel all the hard times were well worth it, there were hard times. There were hard decisions to make and there were times I know we disappointed others in what we were willing and unwilling to do with Nicholas in the fixator. There was stress!!!

There were often times I declined invitations because I knew there would be activities involved that Nicholas could not do or things I did not want him to do. For example if I avoided amusement parks so Nicholas would not be sad about the fact that he could not go on rides. I would obviously rather disappoint someone else than make my son feel bad about having the fixator. I also found that we really really needed to be home in the evening and have plenty of time to do pin care and leg wash and exercises. It was hard sometimes to keep Charlotte and Christopher occupied in the beginning when it took 2 of us to do all of it. When Nicholas was over tired everything was so much harder. We had to have a tight routine. One of us would do baths, while the other did pin care or cleaned up after dinner. Evenings were the craziest time of day and I know we are not the only family that feels that way. But there was a lot to squeeze in. Having people over for dinner and such really was too much to deal with and not worth the stress sometimes. So we didn’t do it and we really didn’t mind most of the time. Oh and we had a huge kitchen renovation that stretched from before the fixator was put on till… well it’s still going on.

Also there are things that were too hard for me to do alone with the 3 kids. Christopher is still a toddler and requires constant supervision on the play ground and else where. Nicholas required constant supervision while on the playground in his fixator. There were times I did take them all by myself but it was not easy! Nothing that involved leaving the house with the 3 of them by myself was easy. So there were plenty of things I opted out of and maybe we did spend too much time at home but I figured it was better for them to be at home with a calm mommy than out with an anxiety ridden one. Luckily Steven worked from home most of the time so we could do the ‘divide and conquer’ thing and that worked pretty well.

When Steven was traveling there were some tricky moments. I had to really focus on being calm and ordering take out. I had to pay attention to the things that really had to be done and let others go. Letting go is important in my opinion. You have to let go of your idea of the perfect house and perfect anything and just do what matters and is necessary. Ok so my house is still a mess but I will get to it. The mess could wait, pin care could not. Building a Lego house with my kids last night could not, participating in a web chat and connecting with other parents could not, relaxing with my husband at night when finally all the kids were in bed could not. So I have a lot to catch up on. We have friends and family who we really did not get to see much that we would like to. We have places we want to go once the cast is off. Nicholas I am sure will be at the amusement park the first day it opens to ride the sloosh or whatever that water ride is called that he heard other kids talk about.

I hate when I read about people saying lengthening is bad because kids who have it loose their childhood. Not getting to ride the sloosh for one or two summers does not constitute a lost childhood. Even spending a lot of time at home was not a bad thing in his mind. He just remembers the the fun stuff he did. He does not even know about most of the things we didn’t do.

Essentially we have spent the last seven months in our own little world. Nicholas handled everything very well ( he really is such an amazing boy) and with no complications (except pin site infections which are expected). I don’t know how he would have felt if we were constantly running around and  taking him to places where he could not participate. Or if we had put ourselves in stressful situations for us, that would certainly have impacted him. Every decision we made over the last 7 months had to have the fixator in mind. Thinking ahead I am sure saved us trouble and stress. We put our family first and that is a lesson I will never forget. I will not say yes to anything to please someone else if it is not what is best for any one of my kids. These 5 (soon to be 6) people in these 4 walls are what matters most. Did we miss out on things? Sure we did. But when I imagine Nicholas, for the rest of his life doing what ever he wants on his own two feet, I am never sorry.

Counting down days still fixator removal!

Nicholas was a little down tonight about having to do leg wash and pin care. He thinks everyone else is off having a good time while he is stuck in the tub. So tonight I began the countdown. I told him that he has 13 days left in his fixator and that certainly changed his mood! On October 24th it will be 7 months ago that he had his surgery. I can so clearly remember the smell the sinai chili and Starbucks coffee. I can also picture him just after surgery, groggy but not in pain. I remember the face of the nurse who was talking care of him and even saw her in the cafeteria the last time we ate there. She remembered Nicholas and seemed so pleased to see how well he was doing. Those nurses must see a lot of patients in 6 months time but she remembered Nicholas. I remember a lot of nurses.

So now we wait and we countdown till we celebrate. We planned on having a fixator removal party but now I am thinking we will wait till the cast is off and have a “Great Growing Nicholas party.” He has worked so hard and come so far. I confess the party has started in my heart already. Everyday I feel joy thinking of how well he has done, through all of this and I feel grateful that I get to be his mom and he gets to live his life standing on his own two feet. Every hard moment (there were plenty), frustrated mommy moment (and there were plenty), every physical therapy session, every leg wash and pin care and every single trip to Baltimore is reason to celebrate because without all of it he would not have his leg.