Tuesday, May 17, 2016

No one ever said life would be.....

No one ever said life would be simple, fun or fair. That was a poster that my 7th grade language arts teacher had hanging in her room.  I read it every day and it's been engraved in my mind ever since. Those are words to live by no matter what type of situation you are going through in life. Being away from home for over 8 weeks now you can't help but miss every day things and long for hugs from people that are so close in facetime yet so far away, but when we agreed to this surgery we were not given a prescription of simplicity or fairness, but we are doing our best to make it fun, or at least tolerable.

Mother's Day weekend was quite the new experience for us.  This was the first time I wasn't with my mom or Adam's mother, it was rough to say the least. I will never take for granted how close our family is (emotionally and geologically).The good part however was that my little family was all together for the first time in over a month.  The tears were plenty when we picked up Johnny and Adam from the airport and the memory making went on for 3 days. We had a seafood dinner and walked around the harbor one day, then spent Mother's Day sleeping in, going to see Captain America (the joys of being a mom of boys!) and ate at our favorite place Steak N Shake.  Needless to say, it was a great weekend but it went by so quickly! By Monday night they were gone again, back home working and finishing up the last few weeks of freshman year and Zackary and I were back in our routine of PT, school and work, PT, ping pong and games. I'm so glad they made it out because it seems the longer we are gone the quicker and harder homesickness hits. Here's a few shots from our weekend.

 

When it comes to life in general things are going okay. This has been a week full of homesickness. I don't get to be there for my sons last week or school or help him study for his finals. My sister is planning pool days with out me (HOW RUDE) while I sit indoors because it's rained for 30 days straight, my nieces and nephews are growing way faster then facetime can keep up on and every day that goes by is one step closer to Adam and I's 14th wedding anniversary that we will not be able to be together on. Not to mention I haven't hugged my parents in months and my puppy hasn't licked my face in forever! Needless to say the pity parties are strong on some days but overall I am so extremely blessed by the opportunity to be here for my son every day, take him to every appointment, administer all drugs and perform all services needed to in able to get the maximum growth for him. I was blessed beyond belief by a close friends daughter (the Chadwicks are my hero) who donated a computer to me for my new job and it has worked flawlessly and given me an opportunity to find something I really like to do while staying at home and talking to my sister every day! Like I said, add in Taco Bell and movie Sunday Fun days and each week is a good one for us.

Our most recent doctors appointment this past Monday didn't come with great news which has made for a rough couple of days but there wasn't horrible newsso that's good. The doctor says there is not enough 'fluffy bone growth' showing up on the xrays (I can't see anything at all) so they backed down his lengthening rate. He is now down to 2 lengthenings a day on even days and 3 times a day on odd number days. This will cause our trip to be longer but give his bone more time to grow.  We continue his bone growth supplements, added milk and now the doctor is looking into insurance covering an ultrasound machine that will stimulate bone growth, but it usually doesn't get accepted until you've had a few unsuccessful months (not just one and a half), so we are keeping our fingers crossed.The doctor is pleased with his continued flexibility and incision healing and he is still infection free so we are always excited to hear that!

As usual we will keep you updated as things occur and I have to thank everyone for their continued support.  Hearing that we will be staying longer adds not only to missing home but financial stresses as well so please don't hesitate to pass on the gofundme page to whom ever you can think of.  Each day is that much easier when you know you don't have to worry about how to handle next months rent or the next piece of equipment insurance is about to bill you for. And in case anyone asks, this is the face of the one they will be supporting, the fun to my simple,fun and fair life, Mr Zackary Titus!
                          

Until Next Time~
Momma Miller


Monday, May 2, 2016

My Sleeplessness Equals Good News

It's 1am, what am I doing awake?! My to do list is short, my day is scheduled and my angel of a son is sleeping soundly in the bed next to me. I can't complain, I also can't fall asleep. So instead of tossing and turning or flipping through one more social media site (don't worry, I get my daily fill and can tell you who's dating whom and who wore the prettiest dress to the Met Gala yesterday) I will update the blog with nothing but good news!

Today (Tuesday 5/3) marks 6 weeks of surviving daily dr visits, high humidity, weekly movie breaks and answering the age old question of "do I really have to do school today mom?" Contrary to popular youth belief the answer still hasn't changed mon-fri no matter how many times you ask, how many kisses you give or what time of day you pose the question. If you can't tell by above comments our lives have turned into a very systematic daily grind and I think it's helped the time go by quickly. However time seems so slow when I think about the last time I saw my husband, teenager and puppy :-( lucky for me I get to see 2 out of the 3 on Friday for a whole weekend!

Sorry, back on track to positive news... Friday marked one month of PT so they did his re-evaluation and he did AMAZING! The therapists are very proud of his continued movement and he even has an increase of 5 degrees in the hip area, while his knee is flexing 90 degrees or more! This is huge for his ability to continue lengthening and not to toot my own horn (because it's obviously all Zackary and his ability) but they said they know the flexibility is being aided greatly by how hard we (he) are working at home on our pt, tummy time and casting.


 In other good news we saw the doctor today in our bi-weekly check up. He's seeing positive things in the X-rays, like usual. He says there's almost 3cm of growth (going for 8cm total) and the rate we are lengthening at is perfect. We will continue to lengthen 3 times a day at .25mm per time, and for you non math people that's about another 69-70 days of lengthening, which gets us to the middle of July! There's always a chance of speeding up or slowing down but as of now we can't ask for better. He also continues to be infection free which means we are about 2 weeks away from being cleared on that! There's still not a ton of bone regrowth showing in the X-rays but we were told that's normal and obviously X-rays can't show everything and the healthier nutrition we are focusing on along with the bone growth supplements he is taking the perfect combination for Zackary. Here's a shot of X-ray day (as we call it) and of course, he's got a huge smile on his face. Also if you can see it, the bone separation is on either side of the huge rod going through the middle of his leg.





























































































































The last good news is pretty basic but important for you all to know: we are doing really well out here in Baltimore, missing our home for sure, but still doing well. We make the most of every day, play lots of ping pong, go for walks when it's not raining and love face timing anyone who will participate, oh and if you have the app KIK Zackary loves to chat with people all day! LOL So thank you all for your continued support (financially, emotionally, and spiritually) and love. We truly feel it all the way out here. Plus, you gotta know it's not that bad when the one who's had it the roughest leaves little notes like this for me in our daily log journal. He sure does have my heart in his hands!

Until Next Time~
Momma Miller