How long have we been here?!?!

June 24, 2016 marks 3 months...13 weeks...93 days...133,920 minutes that we've lived in Baltimore. That's something I've come to terms with. We live here, we're not visiting, we're not passing through and we aren't here for a short time. It's been 25% of the year to date and we still don't have a definite go home date yet. With that said, there has been a lot of things going on, inside and outside the medical world for us since the last time I've updated you all.
Medically speaking, we've gone backwards, and now slowly moving forward in his lengthening (check the last blog for details), Zackary is healing from his toe surgery nicely and his weight bearing is getting more each week. We had seen the doctor about a week ago and he said the bone is looking more promising, better news then lets go backwards for sure! He still kept us at 2 turns a day, but I'm holding my breath for next weeks appointment where he will hopefully up the movement per day. The ultrasound machine is going strong at an average of 8-10 hours a day of wearing it and he is really enjoying the pool time even though it's mostly exercises and he doesn't get 'freetime' swimming that he wished for. Another new thing he is doing is the anti-gravity treadmill, the 'alter-G'. It is the coolest machine that brings me to tears every time I watch him walk without assistance. It's a small glance into a future that seems so far away most days. Each of these exercises actually require him to bear about 50% weight on the left leg. This is something the dr alllowed under therapist supervision that will hopefully stimulate bone growth. Since we are lengthening at such a slow rate, his flexibilty continues to kick butt so we actually do not have PT on tuesday or thursdays, but once we up the lengthening that will go back to mon-fri.

       







Where we spend many hours Monday, Wednesday,                                 and Friday










On the non medical side of things the last couple weeks have been pretty full considering. Adam's mother Laura was able to come out here for about 5 days so I could fly home for a quick weekend break. It was beyond appreciated and I think it gave Zackary and I a little change of pace amongst the mundain daily tasks. Though Laura didn't quiet fall in love with the big city living, she did provide Zackary with new memories and adventures and that I am thankful for! While I was at home Adam and I were able to play in the Carrie Tingley Hospital fundraiser of mud volleyball. This was a place that Zackary was seen at for many years so it always is an extra bonus to give back. Plus it forces us to have a fun day full of mud and memories! Going home was very relaxing for me and it made us realize how important HOME is. We always appreciate visitors, like the one we get tomorrow morning in a ballooning friend Mark, but in order to be recharged we have to go home!

We have decided that any more visits between here and the end will consist of Zackary and I going home, instead of Adam and Johnathan coming out here. Home is good for the soul. Plus I have a teenager who is putting in a full time job number of hours into football every day. So, Zackary and I will making our first trip home together in a week from today! I wish it was for nothing but good things, but sadly it's not. A week ago yesterday we were forced to go to doctors appointments filled with tears in our eyes when we found out my grandfather had passed away. (My step dad's father). This was hard for me on so many levels but to be away from my family during this hard time was heartbreaking. So our trip back for the 4th of July will include a funeral. I know my family understands why I'm gone but I would have done anything to be home with them instead. He will be missed, but we will be spending the whole long weekend remembering him, laughing and making memories as a family and I know he would be happy to know that.

This coming Thursday will include a pt visit, swim therapy, a follow up doctors appointment (hopefully filled with nothing but great news and positive movements) and packing for home! So needless to say it'll be a busy day but it will be worth it and I will be posting all the new doctor news once we get it. Thank you all for continuing to support us through this chapter of our lives that we are praying will end in 1,2 maybe 3 more months. Please continue to pray with us and spread the word for those who may want to support us as well.

Until Next Time~
Momma Miller

A Familiar Sound

One of my favorite things about Zackary is listening to him snore, it always has been. To me it means he is at peace, he is not feeling any pain and that he is still breathing! Hearing him snoring in the post-op/recovery room is extra comforting, and that is what I am listening to as i sit here and type. Yep, back in the recovery room. In the last 36 hours we have gone from our normal lives to seeing a podiatrist about an ingrown toenail for Zackary to a pre-op appointment and no food after midnight because we had a minor surgery scheduled for today at 2:30! Needless to say it's been a whirlwind.
Zackary started complaining and we started treating said toe nail (luckily on the opposite foot of the lengthening side) about 3 weeks ago. There was a trim and some hydrogen peroxide used over the last few weeks with little change but over the last 4 days it went from being sore on one side to the whole toe being swollen, red and scabbed over. So we saw the podiatrist yesterday and he said it is/was definitely infected. Infection is a scary thing when it comes to Zackary so they put him on antibiotics right away and scheduled a surgery for today. Everything seems fine overall and it was very much a preventive measure and minor surgery.
We don't love to ever put our baby into surgery but this was something that needed to be done to relieve pain and prevent future issues. He was in and out surgery in less then an hour and is slowly waking up and plan on being home in the next couple of hours. There's very few restrictions once we get home. He will still be able to weight bear as usual tomorrow and will have the bandage off  in a couple of days. The downfall about getting this done is he is now not allowed to do pool PT for a week and he was pretty excited to start that tomorrow.
Good news that came this morning though was that he got his bone stimulating machine! This is a cool contraption that we put on his leg for 10 hours a day. Yes that's a lot, but as we figure out how to fit it properly and stablize it he will be able to wear it when he sleeps. In addition to the forward motion on the lengthening that we started yesterday we are hopeful that the growth will continue to increase each day!
So, although the last few days have been a blur to say the least, I am thankful to be listening to my baby boy snore and even give me a smile just a few moments ago. :-)
Until Next Time,
Momma Miller

PS: any and all prayers and good thoughts are beyond appreciated! Thanks a ton!

The opposite of forward is backward

Webster dictionary defines backward as: in a reverse or contrary direction or way, toward the past, or toward a worse state. I have never once looked at our situation as going toward a worse state or when we got not so great news did I think we were headed to the past, until now.

One of the hardest parts of the doctor’s appointment every 2 weeks or so is going by myself. Will I remember all the things he said so I can share with Adam (and others) later, will I remember all the questions I have accumulated since the last appointment, will I convey all the things PT wanted me to? Well, I've gotten really good at taking notes and have the dr's assistant on auto email but this week was a new one, he had me completely speechless! I was bumbling, fumbling, blanking out on everything else that was said after he looked at me and said "the new bone growth is not looking good. It actually has me concerned and I really need him to go BACKWARDS a centimeter in length." Backwards, the reverse direction, toward the past, where we have been? One centimeter ago we were hopeless, feeling like we'd never get past our half way mark and now this. Backwards. ouch! Deep breath, you're the mom, pull yourself together! Don't cry in front of the doctor. What would Adam want to know? How does this happen? What can we do? HELP!

After a few moments went by of nodding my head in agreement of everything the doctor said I was refocused and ready to face this head on. So, here's what I learned, or at least the part I remembered so I could share it with you; There is actually new bone growth occurring, just not very much, and not at the level the doctor was wanting. They do not want the bone to get separated so much it won't grow back together so we have to stop the lengthening. The reason he wants us to go backwards is to give the bone less separation and to hopefully stimulate the bone and remind it what it's supposed to be doing. We usually have been growing at a rate of 1/2-3/4 MM per day but since we are going backwards, there is no tension on the muscles so we are actually able to go backwards at a much faster rate. The doctor wants it done in 4 days. So we have a timer set for every 45-60 mins to do a shortening session. Then, when we start going forward again we are to do so at a rate of 1/2mm per day (our slowest forward rate to date). We came home stunned, to say the least. He has been doing so amazing at PT, never missed a pill of bone stimulator and here we are having to take away 20% of the growth we had gotten to at that point.

Even though we are going the contrary direction we are supposed to, we are doing everything we can in our power to do it the best we can. About 2 hours after the doctor’s appointment we got a call saying the doctor is going to lend us his traveling ultrasound machine to stimulate the bone until our insurance will cover our own at the beginning of next month. We will be getting that on Wednesday. And then at PT on Friday his therapist decided to add pool time to his therapy hoping that will stimulate growth as well, and we all know how much Zackary loves the water! They will also be taking out 1-2 pt sessions a week since we are not stretching the muscles at a high rate. That will go on until they up our rate to more then twice a day. This saves pt dates/insurance coverage stuff. We have another appointment in 2 weeks and we are expecting to come out with amazing news of bone growth, flexibility and higher growth rate per day. Realistically we do have to see the big picture of this backwards moment.  It will add days, possibly weeks to our time out here. We were hoping to get home the last week of July but now I'm praying for before school starts, would you mind praying with me? It's much appreciated. We are willing to do whatever it takes to make this everything it needs to be for Zackary but I know our hearts, hope and his bone would sure get strong if we were at home as a family.

Speaking of family, Adam and Johnny came out for a week of summer vacation before football took over again. It was perfect timing too because the week they were here Adams brother Ivan was singing at Carnegie Hall in NYC so we took a quick 3-hour drive over there and appreciated every minute of the 4-day trip away from drs, therapists and our dorm room. We enjoyed sightseeing and just being together. It went by all to fast but it was worth it for the memories made! Now we are back to the grindstone, or new grindstone of continuous shortening, work and PT every day while Adam and Johnny are back home enjoying the nice dry heat. But hey, tomorrow's movie day so I can't complain. We sure are blessed every day because we have each other, and that includes all our family and friends! Thank you for your continued support, prayers, good thoughts, check ins and memories. Thank you for being a part of our story!

Until Next Time~

Momma Miller

    

Reppin' NYC at x-rays.......new machine to show more bone detail

At Carnegie Hall in NYC