The home stretch… I hope!

So this should be the home stretch. Nick had an appointment with Dr.Standard Thursday and the smile on Dr.Standards face while looking at Nick’s leg really says it all! His right leg seems to be about 1cm longer than his left! This was unplanned and unexpected. It also made the news that Nick’s bone is not consolidating as well as we would like much easier to take. There’s really nothing wrong. It’s not really been that long but we still hoped for more.

The fixator could come off next month as planned but Nick would need a rod put in his bone to protect it. I’ve heard this is often painless and no big deal but sometimes it can lead to painful setbacks. As in the past I am inclined to let Nicholas decide what to do. His options being 1) take off the exfix and have rod inserted or 2) leave the exfix on another month or so and then hope he won’t need rod at removal or 3) just wait till the bone completely consolidates.

So far my boy has chosen option one. He’s seemed a little down lately and I think loosing this hunk of metal would help! He also still has pain in his foot when he walks, which the weight of the fixator could be contributing to. His new shoe insert helped with the pain in the bottom of his foot but now his heal hurts because it makes his shoe a little too small! I’d really like this insert to work out! Nick needs to walk pain free! And considering it was over $400 and not covered by insurance it would be a pretty penny to have spent!

On the home front the specifics of our move are still not settled and Steven is obviously still traveling and I’ve been unraveling just a little bit. I think I jinxed myself with my mental health post. I’ve gone back to therapy and even just one session was helpful. I needed to hear that all my stress and feeling’s about surgery/moving were ok. Why do I need professional to tell me this I do not know. Maybe it is too darn hard to admit to those I’m closest to that I am struggling (well some of you know and now anyone who bothers to read this knows). I often think I should be able to handle this or I just don’t want to ask for help. I hate asking for help. Maybe that’s reason alone to go to therapy.

So right now I am doing my best to simplify and say no to anything that will add stress or items to my to do list that are not necessary. The definition of necessary at the moment is “what my family needs” and of course friends if they are in crisis. Otherwise I am not available.

I’ve even taken a Facebook hiatus. I have Steven checking in on Fibula Hemimelia and Limb Lengthening Awareness. I feel a sense of responsibility for the group I created and I want to make sure folks are getting what they need. The group has over 540 members! Its awesome and seems to really be helping families connect and face the future.

My tenure as board president of our church is ending just in time and I’ve not been called in to the nursing home, where I am a companion for dying folks, in a while. I’ll hate to say no to that if they call but the times I go are usually at night and I need to sleep more! Plus there are others in the program they can call on. I am so grateful for the time I’ve spent as a companion. I hope to find similar volunteer opportunities in Delaware.

So while much of our future is unknown I am comforted by many things, including the cute little boy next to me who needs me to help him play Mario vs. Donkey Kong on his Nintendo DS. Time to get to what’s necessary!

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!