Two More Months

Thursday Nicholas had an afternoon appointment with Dr. Standard. His x-rays looked great. His leg looks so very long and straight! The bone is not filling in or consolidating as fast as I planned for it to so while I thought Nicholas had about a month left in the fixator its’s actually two. As has happened in the past my plans and reality just don’t match up!

In the long run this could work out better for a couple of reasons. One ofcourse being the longer his leg is in this pricey hunk of metal the less likely he is to break it when it comes off. Dr.Standard knows what’s best in this area. The last thing we want is for Nick to have a fracture after all this is done! So that’s that. Plus if we wait long enough Nick may be able to go from fixator to removable cast! That would be wonderful in comparison to giant cast which is not removable. I imagine Nick sleeping and bathing and swimming with his leg free and it makes another month of the fixator feel even more worth while. As if the bonus of not breaking his leg wasn’t enough!

Thursday’s visit was even better because our cousin Kent, Auntie Liz and Uncle Jim were there too! Kent sees Dr.Standard for Perthes. I’ve probably written about that before but the fact that Dr.Standard is the best person in the world for Perthes and Fibular Hemimelia is pretty awesome. Kent is doing great and had his own wonderful appointment. He is Nicholas’s idol. They were finishing each others sentences. I love seeing them together almost as much as I love being with my Aunt and Uncle! A hug from someone who loves you and knows you so completely is a little piece of heaven to me. Nicholas has been big into hugs these days, which is fine with me! I’ve got him saying “A hug and a squeeze if you please”, a phrase from my childhood that can feel so bittersweet with so much of my family gone. Hopefully resurrecting it in our house can make it more sweet than bitter.

So all in all Nicholas is doing well. He’s walking much more than he was. We do have go get him a shoe orthotic/insert though because he is still having foot pain when he walks, even for a little while. If the insert works I will try not to worry. Dr.Standard says he just may not be a barefoot person. But Nick really likes being barefoot now so needing an insert long term could be upsetting to him. Sometime next week we’ll have to go back to Maryland to get it since we were not happy with Geisinger’s work with the last insert. It didn’t help at all and from what Steven told me the second appointment to get it did not go well. The first had been great.

In addition to going to MD for the insert we’ve got to go to Delaware to check out houses. Steven’s working three days a week there now and it looks like come June, it will be five. I try really hard to be positive and not think myself into misery but right now having him gone so much feels like a lot. With Nicholas not totally mobile we don’t leave the house more than we have to (when Steven’s not here). I can’t push Nicholas in a wheelchair and Bess in the stroller at the same time (there’s also Charlotte and Christopher to keep track of). I do my best not to be grouchy the kids (or in the least apologize when I am) because of the daily frustrations. It is hard enough for them when Steven is gone!

Nicholas and Charlotte are not happy about moving. Steven and I are just going with it. Trying to see the positives. There really rare positives. But to move forward we’ve got home projects to finish so we can get this house rented or sold. Most of this is stuff only Steven can do, so even when he is at home he has regular work (since two days he works from home) to do and house projects and there’s regular day to day stuff! I still feel incredibly fortunate that Steven has a good job in Wilmington but the whole moving to Wilmington thing while Nicks still in the fixator with Steven gone so much already has added another stress dimension to our lives.

Managing the stress is the best we can do. Even when I am up till midnight with one crying or sleepless kid, or two, I still feel such gratitude. Ok maybe not every second but I am grateful for the moments of clarity when I see that if this is what a hard moment is for me, I am pretty lucky. If I am annoyed because I didn’t get the dish washer loaded I am lucky. If I am tired because I spent the day caring for my children I am lucky. How many parents face so much more and how many people aren’t here to feel annoyed and tired at the day to day things! I sometimes say “if you’re lucky enough to be breathing, you’re lucky enough” (I am sure it’s someone else’s phrase). I like Nicholas’s version even better “if you’re lucky enough to be hugged, you’re lucky enough”. Indeed!

Fibular Hemimelia Before and After

I’ve been asked to provide some before and after photos of Nicholas. That’s kind of hard to do since at the moment he is in a kind of before situation. Being that he’s currently undergoing treatment. It was even hard to find great photos from between previous surgeries. It really reminds me of the fact that between surgeries we don’t pay a whole lot of attention to his leg.

I guess that is truer at some times than others. The fall was hard with Nick having random pain for the first time. Between surgeries one thing that always reminds us of fibular hemimelia is shoe shopping! That seems like it will never be easy. And getting shoe lifts, which either seems super easy or a real pain. Once we find someone who does a quality lift at an affordable price we pray they will stay in business.

Apparently though Nick does not need a lift right now! He’s walking with the walker but still reluctant to put weight on his right foot. I worry he is going hurt his left foot with all the work it’s doing! Still he’s not terribly active right now and now that the infection is under control we’ve got to encourage him more (I guess the swollen red infection pictures are a kind of before. I should take some nice afters to go with them). Steven is away and told Nick that if he takes a few steps each day he’ll take him to McD’s when he comes back.

This time when this fixator comes off I will be sure to take lots of awesome after photos. I hope it will be a few years before Nick will need another surgery. Though the way my boy grows it is hard to imagine going too long without another lengthening! Hopefully I will get to posting some more before and after pics on this blog later today! For now check out the new header collage I created this morning between toddler temper tantrums, preschooler melt downs and eight year old whining (that’s what Nick has been doing whenever we have to go some place without his dad-evator (as in Dad as elevator)! Considering how little attention I had to give it I think the header is fabulous!