The only thing that stays the same...: 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