Ask me what I'm doing August 19th!

The last two weeks we have been staying busy with our routine of physical therapy, tummy time, casting, bone stimulator machine and Sundays full of movies and Taco Bell. We also got out of said routine with a getaway to the Baltimore Zoo and Zackary is officially on summer break from school so there has been no math, English or homework since last week. I've yet to hear any complaints about that one. We had a great time at the zoo as you can tell from the pictures below and it helped pass the time after getting not such great news at the last appointments.

But now it's been two weeks so of course we've had another appointment, xrays and all. The doctor tried to use another baseball analogy to tell me how close we were to going home but I just looked at him. (ask anyone who truly knows me how much I love baseball. Insert eye roll here) Then he said we were at 7cm, only 1 cm away from total length! That's HUGE for us! So then the drumroll went off in my head and I asked to magic question of what rate of growth we were going to be at for the last centimeter. His response was mind blowing... stay at 3 times a day. That means we will be completely done lengthening in 2 weeks! TWO WEEKS!!! Home is in our sights! Once we are done lengthening we have to stay another week to finish up PT here but then we will be free. So again I say, ask me what I am doing August 19th and my answer will be driving home! Home for good, home to my family, home to life! Life will be our 'normal' with physical therapy, pills, bone stimulating machines and continued xrays but it will all be done at home. Every night we will be sleeping in our beds, eating at our dinner table and rubbing on our puppy every day! So three weeks from tomorrow we will be saying goodbye to our home in Baltimore. No tears here with this goodbye! So yes, great news. Final news. And we will continue to keep you updated on how smooth the last month or so will go. Thanks for the continued support and encouragement over the last month we have out here. Now my question to you, what are you doing on August 19th? If you're not too busy do mind saying a prayer for safe travels for our 28 hour journey home?! Thanks in advance.

Until next time,
Momma Miller

Are you home sick?

So this post comes with a warning: We had our doctors appointment only 1 hour ago. I usually give myself time to calm down from (good or bad) news, let the information sink in and think before I speak, or type in this instance, but I just can't today. So let this be a warning that this will be full of raw, unedited emotion.
I'm not known for being the most optimistic person, I see myself more as a realist. This helps me to not set myself for a big push off of a high pedestal of expectations in any aspect of life, but especially medical things because if there is anything we have learned over the last 11 years is that anything medical is never set in stone. This time though I let that little bug get inside my head that said if the doctor says great job keep going at this appointment then we would be home in time for the first day of school for Johnathan. This is a day no mother ever wishes to miss!
"Bones looking good!" "You're rounding third and heading to home plate" the doctor says. I start to smile, here it comes!! The end is in sight and he's going to give us going home news!! "But I want to slow down the rate to 3 times a day just to be safe." ...and face plant! Dropped head first off that pedestal into reality. I should have known better! I lost my smile instantly. But I want to go home is all I kept thinking and I guess it showed on my face because the doctor looks at me and shifts his demeanor and says "oh, are you home sick?" Am I home sick?!?!? My response was, I was home sick a month ago, that doesn't even begin to describe what I'm feeling. All he could say after that was keep doing what you're doing, he is looking good and looking longer just looking at him and we'll see you in 2 weeks. And that is all I can think about...are you home sick? I'm not just home sick, I am overly exhausted on a daily basis of being away from my family, my friends, my home, my dog and the under appreciated dry heat of NM! YES, I am home sick. I want a hug from someone over 5 feet tall. :-/ (although Zackary hugs are pretty amazing if you've never had the pleasure)
Please do not get me wrong, I appreciate all the kind words and encouragement via email, text, phone calls and cards, and please don't stop, but there's just something about getting a hug when you're down, or happy for that matter. that is truly taken for granted by those who can do it whenever they want. Let me make this clear as well, I know there was good news to be heard at the appointment like; we are up to 5.9 cm of growth! That is only 2.1 cm away from our goal! He is slowing us down just slightly and not making us reverse. Been there, done that, don't ever want to go back! And of course Zackary's health and flexibility continues to amaze the doctors and therapists and I am beyond proud of how strong my son is throughout this whole thing!
So with that all said, here I sit, still home sick, but there is no place else God wants me to be. I'm right in the middle of HIS plan for my life and my family's lives. I will see everyone soon as we have scheduled a visit home in 2 weeks from tomorrow (the countdown is on!) And even if I can't be there to drive my son to the first day of school I know I have an amazing support system at home that will continue to be a part of his life and guide him in the ways to create the well rounded man he is becoming. Plus I know for a fact I will not have to endure the crazy weather that is Baltimore winters and my family will all be together next to the Christmas tree soon enough.
Thank you all for listening to my rant, if you made it this far. I respect and love each one of you for your continued support and love to our family. Thank you!

Until Next Time~
Momma Miller

There's no such thing as too much!

     This smile says it all! We finally had good news at the last doctors appointment and we were able to take a deep breath and sigh of relief as we headed to Albuquerque for a few days.

     I have been praying for weeks on end that the next xray would finally show good new bone growth and the doctor would up our number of lengthening sessions each day. Well, he walks in and says 'the only problem we have now is his new bone is growing too fast and we have to double the number of lengthenings per day". Too fast? Too much growth? This was great to hear! But then we also had to be careful because if it grows faster then we are separating it then it will grow together ans we will not be able to lengthen at all. So needless to say we are very thankful we heard the good news in a timely manner.  Thanks to the bone simulator (ultrasound machine), pool PT and anti-gravity treadmill the bone is doing all the right things. The doctor has instructed us to increase our turns to 4 times a day (double what we were at and the original number of turns  we started at). 

     Not only does the increase in lengthening give us hope in getting the full 8 cm but it gave us a light at the end of the tunnel when it comes to getting home. Of course we know that every doctors appointment and xrays give us new news but since we are already at 5.5 cm and we increased to 1 mm a day growth it looks like we will only need 25 more days of lengthening and then we will be done lengthening! We will have to stay another week or two to finish PT and have them find his stability to ship him safely to Albuquerque PT, but we can start counting down to 6-8 weeks! It seems so short compared to how long we've been here and how long we've been preparing to stay at the slower growth rate! Needless to say we are beyond excited on the news that was given, we've also been so busy that I haven't updated and we have another appointment in 6 short days (fingers crossed for more great news!)

Please continue to pray, give good thoughts and support our family in any way you can; it's truly how our family makes it through every day!

Until Next Time~

Momma Miller