Nick’s Thank You Video

This video, which was recorded last night, may seem silly but its message is heartfelt. Nicks eight plate removal surgery went well. He had his last dose of pain meds Saturday night before bed. Nick is free of metal, except for his braces and even those will come off in less than a month. He’s moving around tentatively but feeling well.

Nick was really calm before surgery and woke up calm. Hopefully we will be back in Baltimore soon for a replacement brace for the trial. Nick said it was helping and once it cracked he said the “push off” it gave him was gone. Good news really.

If I don’t write again, happy holidays and happy new year to all our readers and followers. It is a blessing to have Nicholas in your thoughts and prayers. It is a blessing to know writing this blog has helped others. For the new families, as always, please be encouraged! 13 surgeries down and Nick doesn’t feel like he has had a surgery filled life. He feels grateful! He thanked everyone he could on Friday, even me. “Thank you for bringing me mom”. As if I would have had it any other way.

Fibular Hemimelia Clinic?

Nicholas had a great check up at the RIAO today. Here’s the inside scoop:

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By the looks of it Nick’s eight plate is doing exactly what it needs to. It may be hard to see but it is correcting the valgus quite nicely. It still amazes me that essentially Dr. Standard uses that little thing to guide the growth of Nicks bone to correct the knock knee which is a classic issue with fh. Valgus has become a familiar word to a ridiculous extent.

The plate will probably need to come out around Christmas/New Years. Not looking forward to another surgery but its quick and out patient and frankly I will be glad to have Nick free of metal, at least for a long while.

I also added close ups of Nick’s knees. His ligament addition from 2 years ago is still holding up great. I have recently read about parents and doctors being against using cadaver donations. Personally I would not hesitate to let Dr. Standard do it again. It has worked fine for Nicholas.

Right now Nicholas has a length difference of less than 3cm. Probably closer to 2cm which is pretty great. No lift for now still just the insert which has a lift on it of a centimeter and a half I think or maybe two. This is the stuff I should remember but don’t.

Maybe it’s because we get very caught up socializing at the RIAO. We chatted with 4 fibular hemimelia families today. It felt like a fibular hemimelia clinic. Well I chatted much more than Nick but he chatted some. We saw a family we had met when Nick was getting his first shoe in NYC so long ago. We met a family from the Facebook group and a family of RIAO regulars that we have seen several times at events like Save A Limb and camping with Dr. Standard. We also met a 10 year old who seemed pretty similar to Nicholas. Nick talked to him (not about fh) while I talked to his mom. There is nothing like discussing this journey with someone who understands! I cant believe I got to do it more than once today.

I think Nicholas will benefit from that type of connection as he gets older. I am already thinking of ways to connect the kids. The Fibular Hemimelia and Limb Lengthening Awareness Facebook group has been awesome for parents. I think the kids may need their own thing.

So that was our day. All good news. Visited the cafeteria. Lots of laughs. As illustrated in the pic below. Nicholas was showing how much he has grown by pretending to be small which of course is unnecessary but made us laugh.

Batman was at the RIAO today but Nick does not like guys in costumes so we avoided him. We don’t need super heroes with capes and cars, our rescues and our own little miracles come care of Dr. Standard.

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Miles for JP

Tomorrow a member of our fh family will have his first surgery. His momma has shared their journey and offered support to others even though she’s had fears for her own son. I admire that so much. Before Nicholas had his first surgery I don’t think I had anything to offer others.

Its hard to have a baby, find out they need extensive surgery and then wait! Waiting is so hard. There is a lot of time to question and wonder. For JP and his family the waiting is over. Tomorrow his journey begins.

Tibia straightening and super ankle will be the first step. There will be others, miles worth in fact and I hope they are as easy as is possible for JP and everyone who loves him.

I always say the easy ship sailed when we had babies with fibular hemimelia. But easy isn’t the most important thing. I look back on some stages in Nicks journey and I wonder how the heck we got through it! But those moments are so few and far between compared to the joy!

I hope that JP and family can find their own ways to make the most of the hard times (maybe sushi wont be JP’s fav) hold on to each other and reach out when they are in need (we are here for you), and never forget the light at the end of the tunnel. It’s so bright (just like your sweet Jonathan)!