On our way out of Sinai on Monday Nick was pretty happy. We had just learned from Dr. Standard that the lengthening portion of this surgery is done. I had expected it to be. I had marked May18th as the last day in our lengthening register. Doing 4, .25 mm lengthenings per day made it pretty easy to calculate but it could not be official without an x-ray and the ok of Dr.Standard. 5cm of lengthening achieved with the PRECICE. There it is.
Back to leaving on Monday, while expressing his joy Nicholas said “Mom these people are miracle workers. I want to make sure that these things don’t get forgotten and there are people to keep them going”. So I asked if he wanted to be a doctor or a physical therapist so he could make sure they continue but I could tell by the look on his face it’s not an option (and I know he wants to be a chef), so I reminded him that there was a fellow in the room today, as always, because they are always teaching others so these techniques can continue and spread further. Nicholas said that was a huge relief. He cares about the future and other kids having access to what he has had. He feels lucky. That’s the magic I could not have imagined when he was a newborn but my child is lucky.
Nicholas has gained 22 centimeters through leg lengthening (so far). 22 is my lucky number but I think it’s lucky enough to be shared. For along time I thought Nick only needed 20cm’s but predictions change. Not usually quite so much though!
I could not have imagined almost 12 years ago that he would have come this far by this time. Nick’s legs are pretty much even now (again)! This journey has not been what I expected in almost any way. I thought I would have to work so hard to help Nicholas feel good about himself because of this big limb difference. I thought I had to make everything ok. I thought wrong.
He’s always been ok. He has always been his own sparkling self. That was always my biggest fear, not what would become of his leg but what would become of his heart. How would he feel about himself. Now I know he is ok, no matter what happens to his leg.
So many fibular hemimelia families are at the beginning of the journey, wondering what will be, trying to make the right choices. I’ve often said you just have to make the choice and then make it right. Making it right means finding the best possible doctor and team to live that choice out with your family. No one else can make that choice for you. I don’t know how Nicholas could have come this far without the ICLL team and I am grateful to all of them but it’s Dr. Standard that has me in awe still. It’s Dr. Standard who can ease my fears like no one else. He knows my kids leg inside out and he knows fibular hemimelia inside out. That’s everything. I said thank you on Monday but it never feels like enough.
So what can we do with our gratitude? We can fundraise for Save-A-Limb! Want to help click here! If this blog has helped you or inspired you, please give. If you have ever felt inspired by Nicholas, please give. If you want to help others walk, give! We joined an awesome team this year with our friends from Mexico. I can’t wait to them on October 10th!! Its the 10 year anniversary of Save-A-Limb and we are so exited. Nick will be riding! Please consider joining us for what will be an amazing day. You can give or register here. Please also consider sharing and encouraging others to give. Save-A_Limb has helped Nick get what he has needed. We will be forever grateful. Nicholas has had the best care in the world and for that we feel so lucky!
October 10th 2015 is Save a Limb’s 10th Anniversary. We joined our friends team Lets Help Others Walk, joining forces with our fibular hemimelia family from Mexico. Save a Limb has always been closer to our hearts and has helped Nick get the care he needs in a variety of ways. We are blessed to have the best for our son and we want to make this kind of care possible for as may people as possible. Please consider donating or joining the team. It’s going to be a spectacular day and if you like to ride it is a great one!
Celebrating our 9th year at Save-a-Limb! Hard to imagine we didn’t plan on going. We won’t make that mistake again.
This year Nicholas, Charlotte and Steven did the 6 mile family ride. While they did that Chris, Bess and I hung out and even visited Dr. Standard’s stuffed animal clinic. We also enjoyed some lunch, playground and carnival time.
You might notice Nick is not wearing his No Fibula No Problem shirt. Instead he wore his shirt from the 2nd Carerra Por FH 2014 in support of Shigue and Sophia! We loved participating in their event and taking them with us in spirit on this journey! Nick bonded with Shigue while they were here for surgery and I know we will see them again in the future!
Thank you to all our friends, family and anyone who has supported us and Save-a-Limb over the years! This year 3 fibular hemimelia families were part of team No Fibula No Problem and raised almost $3,000!!!
Save-A-Limb has always been one of our favorite days of the year. Like a holiday for our family. We love meeting other fibular hemimelia families and connecting with some again and again. We love seeing our RIAO family and celebrating our kids while supporting the fund.
This year sadly we will not be there. There is an event in our community called The Adventure Games. Nick loves it!!! It was the same day last year and he missed most of it so this year he has decided to do Adventure Games. We are still excited to be fundraising and hope that you will consider making a donation. Nick is able to participate in things like the Adventure Games because of the care he has received a Sinai through Dr. Standard and his amazing team! We will never stop being grateful and never stop supporting SAL!
IF you like bike riding it is a GORGEOUS ride! Please consider registering. All are welcome. In fact they truly need riders to keep the event thriving.
9th Annual Save-A-Limb Ride Event Details
Date: Saturday, October 18, 2014, 8:00 AM
Place: Oregon Ridge Park, Cockeysville, MD
Activity: Scenic Rides – Metric Century, 30-Mile Ride, 15-Mile Ride, 6-Mile Family Ride
Fun Events – 1 Mile Family Walk, Picnic, and Festival
Beneficiary: The LifeBridge Health Save-A-Limb Fund
Course: Ride through Maryland’s beautiful horse farms and rolling countryside
Today Nicholas did a six mile ride and loved it! His partner was his Aunt Tara. Tara has supported Nick always and had participated before. Seeing just the two of them doing it this year was so special!
Nicholas raised over $1,000 with a lot of help from friends, family, and someone anonymous. Team No Fibula No Problem raised over 1,500, not just because of Nicholas. It was also thanks to an amazing boy known as Bubba! He has fibular hemimelia too and is a patient of Dr.Standard.
Bubba is very active. His mom posted a video which included a photo of him playing football. After seeing that Nick felt sure he could play too! I love the power these kids have to inspire each other! Save-A-Limb does that on a grand scale.
It was so exciting to see Nicholas finish the ride. The last bit is a hill, which wasn’t easy. Many riders walked their bikes up. Nicholas made it with help from Aunt Tara, Dr.Herzenberg and Dr.Standard who had his new baby Michelle in the front pack too.
If it sounds like I am laughing in the video, I am not. I was trying not to cry. Pointless really. I cried again as I just watched it.
Check out Nick’s fundraising page! If this blog has helped you, it would be such an honor if you could make a small donation to save a limb. Or consider joining our team No Fibula No Problem and you can fundraise in honor of your child. Your don’t have to do the ride to fundraise. Each and every donation helps save limbs like Nick’s!
Yesterday I posted our Save-A-Limb fundraising page. It feels early to me to start fundraising for an event in October but other teams have gotten started and I wanted to create a No Fibula No Problem team early so other families can join us and represent fibular hemimelia.
I registered Nick for the one mile walk figuring that is something our whole family can do for sure. Nick donated $10 from our family and when the donation was entered it gave the option to do it in honor of someone. I decided to ask Nick if he wanted to do this and thought he might just say no or as me who to pick. Instead he said he wanted to walk in honor of kids with fh who can not do the walk because of their leg.
There were times during treatment when a one mile walk would not have been possible. Thankfully for most of his life I believe Nick would have been able to do this. The times when he could not stand out for him at times. He knows that there are kids who will be in fixators or casts or for some other reason wont be able to do it. He knows what it feels like to not be able to move around. This respect and empathy that he expressed in choosing walk for this purpose touched my heart. Nicholas is the kind of person I always wanted him to be. The best thing that could come out of his having fibular hemimelia is just that… Empathy, Compassion, Kindness and Love. He is strong because of what he has been though but he is also sweet because of what he has been through.
And by the way Charlotte likes to draw (actually she likes all arts and crafts) and she would like to sell her drawings for 10 cents a piece and give the money to children’s hospitals. This was her idea a few months ago with no prompting from me. She has such a big heart! Seeing Nick go through surgeries has had a positive impact on our whole family. I am so proud of my children! They want to give and help and support others. Watching them grow into these awesome people is a true gift. Maybe they would be exactly the same without fibular hemimelia in our lives… we’ll never know.
I have dreaded writing on this blog. Sometimes it feels like every time I write something positive something bad happens. I know it’ silly but it worries me.
However I am taking a chance and writing anyway. Nick seems to be back to “normal”. Normal is not my favorite word anyway but still he is just living life like a regular kid. He’s walking and running. He’s going out to play with friends. He’s not in pain.
That’s the best kind of normal there is for us. Not in pain and moving freely. It’s good timing too because this weekend is the 7th annual save a limb ride. We have been there each year. We’ve not always rode or walked but we’ve been there. This year we will have a fibular hemimelia table. I am so excited to meet some of the families who I have known on line for months or in some cases years. This year will be so special because of this and because Nick had such a hard year and is doing so well now.
Another thing I have realized is that I have actually helped a lot of people by writing this blog and creating the Fibular Hemimelia and Limb Lengthening Awareness Facebook group. We didn’t raise as much money as we wanted to this year (it was a hard year for us as a family) but we are working year round to support the fh families. I get multiple messages each week from folks looking for advice or support and I am always happy to help. I am so grateful to these families who reach out to me. Helping them has been so meaningful. Everyone likes to feel useful and it makes me feel very useful. I also appreciate all the appreciation! Reading about how I have helped someone warms my heart so much.
Nick has been though so much. This is all about him after all but it is actually about our whole family and me as a mom (that’s a lot of what I write about). Being able to make the most of what life gives us is something I am proud of. Being able to take it a step further and help others gives my life additional meaning. I don’t know how many families have been touched by this blog. I don’t even know how many I have emailed with but I know that I am thankful to them for reaching out to me. My life and my heart are fuller because if it. I believed this is something I am meant to be doing. Call it a calling or call it whatever you like. It is, next to parenting, the most important thing I have done with my life.