My husband called tonight from the airport. He is on his way home from a business trip and we were chatting about my last post and he questioned me about me calling Nicholas the famous fixator kid and I had thought I posted about that already but it looks like I didn’t so I need to explain….
One night Charlotte was watching me wash Nicholas’ pin sites and Nicholas told her she should learn how to do pin care incase she has a fixator kid too. And then he said ” and you can tell them to tell everyone at school that they are the famous fixator kid”. I asked if that is what the kids call him and he said “No mom, it’s what I call myself”. This is how he feels about himself. He does not feel bad about his difference. He feels famous! He stands out and he shines! If you have met him you know it!
Another good clinic visit yesterday for Nicholas. His bone is almost healed! But almost is not enough to take off the fixator. Consolidation is really a waiting game and it seems to go on it’s own schedule and not mine. Although Dr. Standard had said 7 months and if we stay on course it will be one day less than that, so I suppose consolidation is working on Dr.S’s schedule. Right now we have a tentative removal date for 10/23. We will not really know for sure till 10/19 when he gets one last xray. Nicholas was hoping to keep his fixator parts when it comes off but I told him that that is not likely. He wanted to use it to build something and of course for general play.
I was really worried yesterday that Nicholas had another infection but Dr. Standard said I could wait and see a bit before starting the antibiotics. When he touched around the pin site there was no pain and no drainage and it was not as red as it looked last night at 9:30 when I started to worry about it. During pin care a tiny bit of goo was on one pin site and Nicholas and I thought it looked mostly yellow but a little green. I think we need better lighting for pin care. It is sometimes really hard to tell and we even use a flashlight.
Yesterday we waited longer than usual at the RIAO and I had all 3 kids with me so it was challenging. I brought lots of snacks and some play dough to keep them busy. I feel bad for whoever has to clean the RIAO because we left a trail of Oreo cookie crumbs all through the place. I did the best I could to clean it up. Christopher was a crazy cookie face mess, I had cookie ground into the bottom of my shoes, and Charlotte and Nick may have been on a sugar high all day. Really next time I will bring less sugary snacks. How can I wonder why they are bouncing off the walls with all that junk food. In Baltimore they get to eat all the stuff we really avoid at home.
Most patients, like us don’t mind the wait because you know when it is your turn that Dr.S will stay and answer all your questions and not rush you through. I had thought that Nicholas’ ankle was going to need to be fused because it seemed to me to have moved over and I thought he had said something about it but when I asked him about it he said that his ankle is doing fine. I think the front of Nicholas’ foot leans a little to side and that distorts the view. He is also really walking with his foot turned out because he is trying not to bump the fixator into his left leg. That poor leg is usually covered in bruises but he never complains.
I met a mom who also has 3 kids but it is her youngest who has a limb issue. His name happened to be Christopher too. We talked a bit about what it was like from our different perspectives regarding limb issues and birth order. We also discussed how each parent takes on certain tasks with a child in a fixator, based on your strengths. I am the leg wash/pin care person and appointment maker and taker usually and Steven is in charge of struts, doing exercises and of course takes care of Charlotte and Chris when Nick and I go to Baltimore. It all gets done one way or anther and working as a team makes it go smoothly.
The day ended with another lively kids with limb length differences web chat. I think it was the 4th or 5th one. It is hard to keep them straight since I help with organizing the perthes group chat. They (the perthes group) are a really lovely and lively group of women and were the masterminds behind our awesome t-shirts that said “RIAO Where great limbs and hips are STANDARD” (in case you missed my save a limb post). Some people come back to the chat each month with more questions, some come without questions and end up with one after reading other’s questions. And then there is me mostly without questions but hoping to answer parent related stuff and logistical stuff . The chats have gotten pretty humorous at times. Like when Dr.Standard was describing the difference between a typical fh foot and a club foot. He described a fh foot as sometimes being called reverse club foot (equinovalgus is the technical term but the reverse club foot thing was news to me) because the fh foot is usually pointing “down and out” and I had to giggle a bit thinking of Nick’s foot as ‘down and out’. Of course it no longer is! He also mentioned how the knee of a child with fh sometimes “pops and clicks”, which reminded me of how he once called Nicholas’ knee “loosey goosey”. So we laughed a bit about the lingo which can sound silly but is accurate. Maybe some new parents reading this are thinking “how can you laugh about such this stuff”. Maybe because at close to midnight after a long day I giggle at everything, maybe because the words really are stilly sounding and maybe it’s because laughter really is the best medicine (at least for the very tired and sometimes stressed mom of a famous fixator kid). How about all of the above.
YouTube – Perthes Disease.
An awesome video of Dr. Standard and one of his amazing patients!
Overcoming Perthes: Cameron Mathison Goes From Leg Braces to ‘Dancing With the Stars’ – ABC News.
A friend sent this to me this morning and although it is not what Nicholas has, Cameron Mathison is an inspiration. Plus I have a cousin with perthes and I have met lots of amazing children with perthes through the RIAO. Dr. Standard is as much a hero to them as he is to Nicholas. There are other treatment options now which is great but the kids who go through them are just as amazing as Mathison.
With Nicholas in kindergarten there is little time to post! We are so busy. I must admit that I spend a lot of my day worrying about him. I worry that he will get hurt at recess or just fall in the hall. Of course none of these things have happened and he loves school but I still worry when he is away from me. And then I take him to the playground and see him at the top of a really high play set and I ask how the heck did you get up there? His response was “mom I climbed the rock wall” (the rock wall was about 8 feet high!! I would have stopped him if I had seen him but I was chasing his 22 month old brother at the time). So is he really any safer with me…
Kindergarten is wearing him out. He has said that there is a lot of walking during the day and it makes him tired. Not tired enough to use the walker or the wheelchair. I usually carry him from school to the car at the end of the day. I think the other parents stare more at me for carrying him, than at him for having the fixator. I am sure it is a sight, he is quite tall for his age and I am quite short mine. At 5’2″-ish he says I’m “a little mommy”.
Tomorrow night is the limb differences web chat. I learn so much on these chats because in this world of limb differences and treatment things are constantly changing. On one hand I have learned that they do not do things the same as they did when Nicholas had his first surgery. He had the super ankle and the lengthening at the same time. Now they are done separate because there are better range of motion outcomes for the ankle that way. On the other hand Nicholas will have knee surgery in the next year or two because of an older boy who has a knee just like him and will need a big knee surgery, where as if they had acted sooner it would have been a small surgery like Nicholas will have.
At church this past Sunday, Nicholas has his first religious growth and learning class. At the start he really did not want to attend. When he finally agreed he asked me to tell the kids about his fixator. Before I had the chance it was time to share our joys and concerns. When Nicholas’ turn came he said “I have an external fixator for leg lengthening and well I don’t know if it’s a joy or concern” so I said “maybe it’s both”. That’s certainly how I feel about it.
Nicholas and his turn at 'dunk-a-doc'
- This is Dr. Nicholas, working on a tiny fixator. He asked our favorite nurse Lee “Where’s the half pin”.
Check out the great t-shirts "RIAO where great hips and limbs are STANDARD".
I can’t believe I have waited this long to write about the awesome time we had at the 4th Annual Save-A-Limb ride and carnival. I think I have mentioned that our family does not ride but we fundraise and go for the fun and fellowship. This year Nicholas and I went to a dinner the night before. It was fun to be out on a “date” with my boy. His social abilities still impress me. Nicholas was a little disappointed not to get to go up to the podium to talk and the power did go out so we missed some great presentations but other than that it was a wonderful night and we met some amazing children and families. Hearing stories about the other RIAO docs that Nicholas doesn’t see was great too.
Dr. Standard introduced us to a family with a baby girl who has fibular hemimelia. They were down from Canada and had raised over 4,800 dollars for the fund and their child had never been to the RIAO. I love for families new to this world of fh to get to see Nicholas. Reading about how well he and other children handle being in the fixator is one thing, watching him run circles around me in his fixator is another! I hope that seeing him gave them hope for their beautiful little girl. While chatting Dr. Standard mentioned the claims that children who undergo lengthening suffer psychological damage… of course we all had a good laugh at that. Nicholas dispels that myth instantly.
We also talked about the web chat’s Dr. Standard does every month. He told them that it is really about the moms sharing information and I said no, we are the background chatter while everyone waits for their turn to ask a question. I think it is all about him being able to answer complex questions instantly and explain things in a way a parent can understand. He is right to an extent because connecting with other parents who have been where you are headed is priceless. Empathy is so very powerful. The tips and suggestions you can get are so helpful. These groups and chats seem to remove the loneliness you can feel as a parent of a child with a limb difference. Well at least that is what they have done for me. Other parents who have been there know what it is really like. They know the stress, the hopes, the fears and the possibilities!
The dinner we attended and the carnival are really a reminder for me of how far Nicholas has come. The gratitude I feel to Dr. Standard and the RIAO team is hard to put into words. I feel like I spend a lot of each Save-A-Limb discretely choking back tears. But those who know me would not be surprised.
Fundraising for Save-A-Limb just feels right. Knowing that it helps kids like Nicholas have treatment options who normally would not is heart warming and I again have to thank everyone who contributed this year and in the past!
We have met our fundraising goal of $1,000 and may even have more money coming in. I am so proud that Nicholas has inspired so many people to give to this amazing cause and so thankful to everyone who donated! I asked Nicholas what he wanted to say to everyone who donated and here it is:
“Thank you for helping us and thanks for helping save-a-limb it’s a wonderful thing to help kids get fixators. You gave me the inspiration to help more people. Thanks for helping our fixator fundraising stuff for kids who need fixators” Love Nicholas
Four more weeks and lord willing the fixator will come off Nicholas. Or we will at least schedule the surgery date. He and I went to Baltimore on Monday for x-rays and I had hoped to schedule removal but his bone is not fully healed. It is healing well and just as it should but not ready yet. Dr. Standard had said it would likely be 7 months in the fixator and it actually has not been 6 yet but I guess we are getting impatient. Really we should just be grateful that he has done so well!
Dr. Standard measured Nicholas to predict his height at maturity because I asked if he could re-estimate Nicholas total discrepancy. According to his calculation Nicholas will be 6’3. It was not a surprise to us really but Dr. Standard and the lovely doc working with him from Canada were surprised. In the end Nicholas will not be 6’3 because he will have a surgery at about age 10 to staple the growth plate in this left leg. There is a technical name for this and more to it I am sure but what I know is that it is an outpatient procedure and we can eliminate 5cm of Nick’s discrepancy this way. That is all I need to know at this point! 5cm means that his final lengthening might only need to be 4cm. Since his total was supposed to be 20 cm (this was measured when he was just 6 weeks old and Dr.S said that these early measurements tend to be over measurements) and he has 11cm through the last two surgeries then he can make it to 20 with less time in the fixator than I thought.
Nicholas starting kindergarten with the fixator on really worried me but all in all it is going really well. He is loving school so far but I am still anxious. He goes to school without the walker or wheelchair and was even able to participate in gym today (oops phys ed is what he calls it). Yesterday he said his day was perfecto and today he said it was awesome. His school is on one level and the room he is in is the closest to the bathroom and cafeteria so there is not too much walking to do. Going to the playground does require that he take some stairs but he said that his teacher held his hand to help him balance. Nicholas also said that he had to go to he nurse because he told his teacher that his sock was pressing on his pin site and bothering him and she told him that the nurse is the perfect person to see because she can fix anything. The nurse folded his sock down and he was happy with that. I am really glad that Nicholas spoke up about it because I was not sure how comfortable he would feel in that situation.
Now I am just hoping that things continue to go well. Nicholas wants to get school lunch tomorrow but I think he might have a hard time walking with the tray so I think I am going to send a note in or talk to the nurse about it in the morning so that someone can help him. I am so glad he is in school because he loves it and needs it but it is so hard in some ways. It is a bigger class than he had last year and it requires that he be more independent, which I don’t think is an issue for him at all but it is an issue for me I guess. My boy is growing up, so big, so fast. Even with loosing 2.5 inches of his eventual height, Nicholas will still be just about a foot taller than me someday. I get the feeling that someday is coming way too soon.