Hello from 30,000 feet!

Zackary and I have trekked through the Baltimore airport, looking more like a vagabond then I care to admit, but made it onto the plane and are officially headed home. The last 36 hours since chatting with you has included two movies, getting out of the hospital, some delicious chocolate cake, the first NFL game of the season, pain management and lots of sleep for Zackary!

Specifically for Zackary he’s kept up on pain meds to stay ahead of the pain until we make it back home per the doctor’s order. He is usually on Tylenol as needed at this point but there is a lot of moving, standing, swelling and more pain then expected so we are playing it safe. The knee area surgery is officially the worst we’ve encountered to date! We have been icing the knee and trying to stand for bathroom breaks and things of that nature but overall are taking it very slow.

Once we get home he will have physical therapy 3 times a week for about 3-4 weeks depending on progression. His biggest struggle is balancing and bearing all his weight on the leg that didn’t have surgery this time, which is his left leg. Believe it or not his left leg is still not fulling healed from last year’s leg lengthening surgery. Before he referred to his legs as the good and bad leg and now it’s his good/bad leg and bad/good leg. Needless to say he is having a rough time and is feeling defeated and frustrated whenever he tries to move, another new thing we are not use to experiencing with our happy go lucky Zackary. The doctor also said he will be wheelchair bound most of the time and using crutches VERY short distances (few steps each day) over the next week. After that he will wean himself onto the crutches and eventually off them within a week or two. Should be walking fine in a couple weeks and rough housing again in 4-6 weeks.

At this point I would like to take a minute to bring up our GoFundMe account. This has truly been a life saver. Every dollar has gone directly to Zackary and his medical events. All the money we raised last year was more than Adam and I could ever imagined! We went into the whole year blind and faithful last year and you all supported with the exact amount we needed. We covered every expense that came our way with being in Baltimore for 5 months, short of medical bills that we are slowly paying off. We were even able to save a little to help with his surgery early this year and the surgery he just had so we didn’t take a huge hit in our daily finances. Yep, there’s been 3 surgeries in 16 months for him! With that said we have noticed a few new donations and want to thank you all so much for continuing to help. Medical bills are always the lingering effect of these situations and any and all donations are more than appreciated. There continues to be checkups, x-rays, medicines, well checks and future events that are in the pipeline in addition to paying off the last of the current trip we are on. With that said, should you feel the want to help we are always, ALWAYS beyond grateful! Thank you for all you do for us and reading these silly blogs that take my mind off of things for just a few minutes. Form our family to yours, thank you!

Until next time-

Momma Miller

The ending of another day and another surgery

We're closing in on the end of another day of surgery for our strong boy Zackary! 

After a very long 3 1/2 hour wait he was taken back for what was suppose to be a 'quick operation' in the words of Dr Herzenberg. I was told it would be about an hour to an hour and 15 minutes. So once we passed an hour and half of waiting every minute was a new level of mom worry. After 2 1/2 hours I finally saw the doctor and he let me know everything was fine! What a relief, but really? Does he know all the new grey hairs he just created?! 

So what happened in that few hours? The following... they completely restricted the tibia growth plate on his right leg. This is permanent and will have him lose an estimated 2cm of height on the right leg. On the ride side femur the did a temporary restriction.  Instead of destroying the growth plate they put in two 'eight plates', one on each side. These are plates that restrict the growth so long as they are in place. We are going to monitor the difference change with X-rays every 6-12 months and once we expect only 1-2cm left of growth (out of 3-4cm that's currently there) then we will remove the plates and allow the last few centimeters to grow. 

Why did we do this instead of so many other options? We knew we needed to continue to correct the leg discrepancy, that is currently at 4cm per measurement this week. It was at 0 when we left this time last year just so you have some comparison. Of course one option is another leg lengthening but that was so hard on everyone we are trying other options. We will be able to get 3-5cm of length shortening on the good leg which will actually make the legs even or have the right leg shorter by the time his legs are done growing by the age of 16. Who knew that's when boys' legs stop growing! This will set him up perfectly for his future hip surgery where he will lose about an inch with the reconstruction. All this to say, we've done a ton of research, okay Adam has, and we feel this is what's best for our situation. He will lose about 2" of overall height but it's the best of all choices. Sinai hospital continues to be the biggest blessing with a doctor who doesn't force anything, lays out all the options and answers ALL the questions we come up with. 

Now back to today...I was able to finally see Zackary about an hour after I spoke with the doctor and for the first time since I can remember he was crying when he woke up. Pure tears of pain. It was so hard to watch. I couldn't calm him down. He let me know this was the worst pain he ever felt and it took far more time then I care to remember to get it all under control. Once that happened he let me know it's his natural instinct to use that leg, flinch and move that leg since it's always been his 'good' leg and his left leg still isn't 100%. 

He's slowly learning to not use his right leg, or muscles at all at this point but they did admit him to the hospital for the night for pain control since he was having such a hard time. 

We've now been in our room about 4 hours and he's finally off oxygen (just 30 mins ago) and he ate a decent meal, is holding a coherent conversation and even lost a tooth that's been loose for about 3 months! Yep, it's been a day! 

The immediate future includes... being released tomorrow afternoon most likely. We will then stay in Baltimore one last night for safety then fly home Friday. He will need physical therapy for about 2 weeks back home then he'll be ready to rough house and play basketball again in about 4-6 weeks. 

Thank you all again. These words are never enough to explain our gratitude but I can't say it enough either so THANK YOU! Thank you for supporting, praying, donating, checking in and sending good vibes our direction. We definitely feel all the love. For now I'll let you all go and digest all the info I just threw at you and will update in a few days to let you know how he's doing. 

Until next time-

Momma Miller

While We Wait

As I sit here closing in on the second hour in the waiting room I realize you all deserve an update because if anyone hates waiting even half as much as I do then I've basically killed you all. Today is pre-op for his next surgery coming in just 2 days, Wednesday. 

Zackary and I flew in to Baltimore late Saturday night in enough time to settle in and go to our favorite pizza place for dinner yesterday. It's a quick trip and will be back by Friday afternoon so long as there are no complications. 

Today's pre-op will give us a little more feel on what the next year or two will bring and what we can do to do all we can to make Zackarys quality of life the best possible. All parents' mission in life for their kids, right? We will also learn more about surgery this week of course and what to expect for healing time, restrictions, etc. 

This weeks surgery will be the disruption of the growth plate on his 'good' knee. We will stop the last 2" or so of growth on his right leg to even out the difference a little bit more. The technical term is epiphysiodesis should you want to do a little bit more research on it. Or you could just ask Adam, he knows he technical stuff and I have to keep things basic. 

That's basically all the news I have for you all at this point and my phone just flashed low battery (of course I didn't bring a charger) and are well above the 2 hour wait point so I guess that's my signal to wrap this up. I, of course, will give you a few more updates this week as things progress but I just thank you all for your continued support, curiosity, love and prayers for the whole Miller family. Life is not always easy but it will forever be worth it! 

With love, 

Momma Miller

It Always has to be Something

Surgery has come and gone and just like that we have survived another hospital visit. Zackary is silently, well snoring away loudly, next to me as I type. So is Adam but that’s another story J Any parent with a child who has gone through something extreme knows how exhausting it is, but back to Zackary… We woke up earlier then the sun and walked across to the street to Sinai Hospital and was checked in and in pre-op by 6:30am. Everything was looking good, almost too good, and we even almost added a last minute addition to the surgery, but decided to go with the original plan and schedule out future surgeries soon. Those details will be figured out more on Thursday morning and will clarify more things then.

Not 10 minutes after he had rolled him away the doctor came out to talk with us and that was definitely a first! Shouldn’t he be back there, doing surgery?! Just a thought. Well he had to come out to let us know once he got a closer look things weren’t quite like the way he wanted them to be. That’s tough news to hear when you’ve driven over 1900 miles and taken your spring break and the last 2 months preparing for this surgery. He let us know that the density of the bone was not strong enough for him to feel confident to remove the rod completely without high risk of fracturing occurring or requiring him to stay very inactive for an unknown amount of time and we all know how well that goes with a kid. He says the bone is about 80-90% dense compared to the right leg. This is his whole left leg, not just the spot where the lengthening occurred last year. He says this is caused by first doing the aggressive surgery last year but also just from years of not using that leg as much as the right leg. We will discuss methods of strengthening the bone come our appointment on Thursday as well. He let us know that instead of taking out the rod and screws he will just be taking out the screws. What this does by leaving the rod in is a second defense of stability for the femur. However, by removing the screws it has changed the hardware from static to dynamic which means the rod will be able to move around a little within the inside of the bone and without the screws the bone will be the first thing to absorb movement, instead of the hardware, so it can be used more to strengthen the bone.

With that said, the surgery came and went like I first mentioned and Zackary was back in his own bed by 11am, Johnathan and Ivan (who was visiting from NY) weren’t even awake yet! LOL He’s eaten and drank a little but is already asking for Taco Bell so we know he’s back to himself! He’s also walking on his own, a little slow but still with no assistance. The doctor also let us know it was very important to schedule the appointment on Thursday morning before we leave to go over the next procedures that could be coming up for him as early as this summer. But on a crazy and positive note one thing we did learn today was that Zackary is actually supposed to be almost 6 feet 4 inches tall, so with his adjustments he may ONLY be 6’-6’1”!! Thank goodness for tall genes!

Until next time (hopefully around Thursday),

Momma Miller

It's a long road

Today, after 3 days of driving 9+ hours each day, we pulled onto Northern Road and my stomach sank. We passed Pimlico and I was nervous about what the next building would be. The lights of the hospital were seen as we approached the corner and it took all I had to hold back the tears. We got out of the car and I heard the excitement in Zackary’s voice knowing where we were, remembering all the time we got to spend together in this building and he was stoked to be able to WALK up to the key pad and know the ‘secret’ code to get into the building even though it had changed since the last time we were here. (hint: it’s always the current year) How is he so excited? What is there to be happy about? Why can I not have the faith and memory of a child who is just excited to experience life? He has surgery in 2 days and he’s excited to hold my hand as we cross the threshold of the Hackerman-Patz House together to take on our next adventure as a family.

The four of us started our driving adventure to Baltimore Friday morning spending Friday night pool side in Tulsa, Saturday night with a house full of fun Miller cousins in Louiville, KY and pulling in just shy of 9:30pm tonight to Baltimore. It was quite the drive that lead us from 70 degrees and sunny to 32 degrees and snow! There was one season we missed living here last year and apparently God wanted to make sure that we were able to experience that one, winter. I’m not the happiest seeing as how I didn’t pack a jacket or boots but Johnny is stoked so I guess it all evens out.

The last time I walked the halls of this building I was lonely, scared, sad, frustrated and questioning what choices we had made on behalf of Zackary, watching your son struggle day in and day out takes a toll on you. As a parent you always do what you think is best for your child but there are some choices you look back at and wonder if it was truly the right thing. This has obviously been the best option physically for him, he gained 3” of growth in his left leg! And of course I’d like to think mentally we didn’t screw him up too much. No person wants to go through months of pain and recovery but he took it like a champ and believe it or not is just as loving and smiley as he always has been. He remembers things more, like pain, recovery and understands the concept of time along with other things unlike when we went through things like this when he was littler but like I stated in the beginning he’s oddly excited to be here, his ‘home’ from last year, as he calls it.  So as I now unlock the door to our room and unpack to prepare for the week I have the faith of a child, MY child, and hold his hand boldly as we prepare for the surgery on Tuesday to remove the rod from his left leg.

A whole bunch of new!

HAPPY NEW YEAR!
A new year means so many things to so many people. It means a start to something that will be and an end to what was. Adam and I have gone through a lot, I mean ALOT, in the last 17 years together (he asked me to be his girlfriend Dec 9, 1999) but I don't think I've ever looked forward to a new year the way I was looking, dreaming, anticipating, hoping, longing and wishing for 2017. No I wasn't stoked to become closer to the age of 35 then 30 (in just 4 short days) nor was I excited to see my boys grow up even more, that's my least favorite part of being a momma. Can't they be little forever?! I was excited to leave behind all that was 2016; the amount of time we were apart as a family, the broken bones, 4 surgeries between us all, medical bills, losing one of my grandfathers and my least favorite is watching anyone I love suffer, especially my kids. I'm not expecting 2017 to become the be all end all of best years ever but I knew it meant we were that many days past the worst of days. So again I say Happy New Year to you all!
Of course since my last post our bellies were filled with too much turkey on Thanksgiving, all 3 Thanksgivings, and what seems like a million presents were opened to remind us how spoiled, I mean blessed our family truly is during the Christmas season and we spent the evening dancing hard at my parents house at a 'Just Dance" competition to ring in the new year. The best part about this whole holiday season was we were together as a family and our goal of having Zackary walking on his own came true, It was the best!!!

Zackary's last xray was done the first week of December. This time the usual 2 week wait on the doctor flew by due to all the holiday hustle and bustle. It was so beyond exciting to open up the email that reads 'Zackary's bone is 100% healed and he is cleared of any and all restriction's'. I stopped everything I was doing (shhh don't tell my boss) and called, texted and emailed everyone. He was stoked as well to hear he was finally allowed to do whatever he wanted. We got it in great timing too, the day before his basketball practice that he smiled through it the whole time. Since then we have dropped PT down to just 1 day a week and will most likely be dropping it completely in the next month or so. He also was happy to stop having to take his bone growth supplements and constantly wear his bone stimulating machine. He's used his freedom to go 100% at basketball; he had his first game last week and scored 2 pts, had 1 assist and a few steals. He also took one day last week to shake off the dust on his snowboarding skills! Though I was not released yet to board after my broken ankle the boys had a blast spending the day on the mountain in Santa Fe with Uncle Ivan while he was in town from NY. Lastly he has been able to add bike riding which has always been his favorite way to pass the time. For awhile it was just a couple minutes out in front of the house but since the new year he's gone on two long trips; 3 miles one day with Adam and then another 5.5 miles a few days later on a family ride! Needless to say, except for the scars and slight limp that he's always had you'd never know he needed assistance walking for over half the year last year.

                            

The other half of the email that the doctor sent did include details on scheduling his next surgery. :-/ Yeah it took a little wind out of my sail but I knew it was coming so I wasn't surprised. This surgery will be to remove the rod that is currently in his leg, don't ask me how! They said it will be a quick day surgery, possibly one night stay in the hospital then back to 100% within a week, supposedly. We know Zackary has always been a special case and never go into anything thinking it will be the average/normal of anything. His surgery is scheduled for Tuesday March 21st so we plan to drive out to Baltimore and stay the week, driving home the following weekend. The one up side is we are able to schedule it during spring break so the whole family gets to make it a fun road trip! We'll of course continue to keep you up to date as that gets closer.

The last of the updates include the rest of the family. I'm back to 'normal' if there ever was a thing. I'm still at PT once a week but I stopped wearing my boot this past week and plan on joining the boys on the mountain this coming weekend the celebrate Johnathan and I's birthday weekend. I've promised to take it easy and do not plan on doing jumps quite yet. And for those who are asking I broke my ankle 9 weeks ago so I am well inside the "8-10 week fully healed" timeline, plus there's metal in there now so really it's stronger...right? Adam continues to plan and take a work trip once a month, or so, and Johnathan is so excited to be back in school, or was it so excited to miss school for snowboarding (shhh don't tell his teachers)?!?! Either way we are all just happy to be together and face this year as a family doing what it takes to make 2017 a fabulous Miller memory making year! Thank you for the continued support to both the financial and emotional side of this whole journey. Knowing you all are there for us in prayer and so much more helps us sleep better at night, so THANK YOU! Praying for you all as well and hope this letter finds your 2017 starting out better then you could ever hope, dream, long or wish for!

Until Next Time~
Momma Miller