To Good To Be True

I know a mistake when I see one, and I must admit I've made a mistake. I should not have waited 5 weeks to update you, and for that apologize. We've had 3 appointments since the last post and honestly they've all been great. Can you believe that?! I sure can't! It really is to good to be true.

3 appointments ago we went in with similar expectations as the week prior, hoping for continued growth, knowing that things couldn't get much better then the prior weeks but they did! Zackary continues to blow the doctors away with his flexibility and bone growth that they increased his rate of lengthening AGAIN! This is unheard of for the Millers. In all the 6 months we were here last time, we never got above 1mm a day rate and this appointment he increased it to 1.2mm every other day. It came with an earlier wake up time for me to get that 6th turn in but it was totally worth it when we started doing the math and realizing it was possible for us to be home in the month of July.


We continued on with our very predictable routine, that we love so much, until the next appointment. Though we could see the increase in patient and wait time for our appointment (they lifted a lot of medical covid things so summer surgeries are in full swing over here) the results and appointment went rather quickly. We knew upping to 6 turns every day was a bit of a stretch and the doctor confirmed that when he said, smooth sailing but steady as he goes; meaning no change. But that meant no decreasing so we took it with a grain of salt and moved on with our week. This is also the week that they added the anti gravity treadmill to his routine. It's an amazing machine that controls the amount of gravity in it so he can work on proper technique of walking without the weight bearing. What will they think of next, am I right?!




The last week or two have been a little more rough for Zackary. He is feeling more tightness and he's losing a bit of flexibility. This is to be expected as we are told by PT and his doctors but having him feel so well for so long it was a bit of a punch to the gut to feel like we were going backwards, a feeling we were all to familiar with and started preparing for some not so good news at the next appointment.  Each time Zackary gets xrays I get to be in the room behind the screen and I have learned to read them very well. It's like a sneak peak that I try not to get too excited or bummed about but this time I just didn't know. I'm staring at it and I didn't see the extended shadows. Was the gap bigger? Is my mind playing tricks on me? Zackary also felt like things were right. That appointment felt like it took forever from the paperwork to the waiting room to xrays and then sitting in that empty room just waiting and knowing the doctors were reading said xrays.

Well we finally saw the doctor walking our way and he didn't have his happy face on. 'Not bad' were the exact words he used. Uh, not bad is not good but could be worse? I'm not sure, just tell it to me straight I wanted to holler at him. He popped the xrays on the screen and said it's fine. Ok, let's get more vague why don't you! I could see the tension in Zackary get stronger as well. Finally he said and I quote "We can slow down the turns if you want". If I want?!?! Why would I want to do that. I pulled it together and asked, why would I want to? He says if we're concerned about the tightness. He then followed with, I think the bone is good enough and I know you guys want to go home sooner rather then later so we can just push through the last couple weeks or we can slow down. I looked at Zackary and I could read his mind. He's always been a 'push through' kind of kid. Without hesitation I said 'no we're good'. We promised to up our at 'home' PT and add more walking and then before he left he said the magic words. "Ok, one more appointment then you get to go home."

It's been a week since that appointment and I still can't accept it. I can't believe we have a flight booked for THIS SATURDAY to go home. We have fallen into such a comfortable routine now. We see professionals daily to monitor Zackary. We know what each minute brings. I know my biggest goal is to kick Zackary's butt at our evening board game hour. Are we ready to get back to real life in ABQ? Are we ready to leave our little safe spot in this room? This is all to good to be true to even think about. But ready or not, we're ready for our last appointment on Thursday for the doctor to tell us Zackary is done lengthening!

Until Next Time~
Momma Miller

It's A Good Day To Have A Good Day!

Double appointment days can always be a bit stressful. It throws off our routine, we never know what the x-rays are going to show and honestly there's always a bit of anxiety knowing the doctor doesn't give out good news at every visit. This time though, we were excited to see the doctor for Zackary's first post-op appointment. We both woke up and decided it was a good day to have a good day. We started off by being able to sleep in an extra 30 minutes so we were already ahead of the game! Breakfast was made and off we went. Doctor waiting rooms where we usually spend at least 45 mins (usually closer to 90 mins) only took us 20, can you say winning?! The x-rays were taken and then we sat in our room waiting for the doc. 

Dr. Herzenberg came in with his fellow doctor and was in a good mood, mind you we're use to his....doctor style bedside manner, I'll leave it at that. He even complimented Zackary's drawings on his leg and asked to take a picture with his 'favorite dude patient from NM'. Zackary and I just smiled (under our masks of course) and knew he was ready to have a good day too. He asked how Zackary was doing and as I flowed with praise on Zackary's healing, flexibility and low pain he quickly joined in when he saw with his own eyes how much Zackary was able to move his leg. He said his flexibility was at the point he would expect for week 4/5, not beginning of week 2, good news! He moved on to the x-rays and said he was pleased with what he saw! This was the moment we got to give a big sign of relief. We've sat in that same room when the doctors told us he's not happy and we had to stop and even reverse the lengthening process, not fun. So his words helped melt away the anxiety. 

We knew it was smooth sailing from there as said to keep working hard. Then, before he left the room the doctor left us with not only good news of allowing Zackary to increase weight bearing from only toe-touch to 40-50 pounds but ended with great news letting us know we could actually increase his lengthening rate! We moved from 4 times a day to 5 times a day, totally 1mm a day. This is huge, and proves the praise was warranted because Zackary is killing it this time around. 

The appointment went so quickly we actually had time to go on a nice walk (pictured) on a fun path and even got hospital pizza for lunch. It's the little things when you're stuck in the room everyday all day. He moved onto PT for the day and, as usual, his therapist said he's doing great and is quickly learning what 40 lbs feels like. The weight actually stimulates bone growth, so that mixed with his assortment of vitamins and good attitude we are convinced our goal of being home by August 1st may be more realistic then we had originally thought. So needless to say, Monday was a good day to have a good day!

The last big event for this week was getting fitted for his CKD (custom knee device) today. It's like a removable cast with a ratcheting gear to adjust the range of his leg. Though he is doing well now with his flexibility it is very common to lose range of motion and become stiff the more lengthening they do. The CKD allows his leg to be forced in a straight position for a certain amount of time each day so he does not lose the ability to straighten. For now, it's only a couple hours a day, but as we progress so will the amount of time he needs to be in it each day. He will have to sleep in it for up to 8 hours within the next couple of weeks. Not one of Zackary's favorite medical devices but he knows the importance. 

Now that we have all of that excitement out of the way for the week we go back to the daily routine of PT, work for me, growing for Zackary and enjoying time together because, well, that's all we have these days and I'm ok with that. Next week's doctors appointment is on Thursday so if anyone wants to pick a good day to have a good day, won't you join us then?! Thanks for all the support and love, we hope this finds you well and in good health. 

Until next time, 

Momma Miller

side view-------- showing growth-------front view 

                        

Another Year, Another Surgery

"Like the sands through the hourglass, these are the days of our lives"...As I looked up at the TV in the waiting room I realized it was the first time I had heard that in about 15 years. Yeah, I was THAT stay at home mom back when the boys were small and made sure to always know where Marlena and John were in the crazy love saga that was thread throughout the town of Salam on the soap opera Days of Our Lives. As I sat there and watched it, I realized I didn't miss a thing in the story line; same people, same town, same love/hate relationships, same dramatic flare, same everything and then I thought to myself (not to be dramatic but) that's exactly how our lives are right now in Baltimore. We've been here before, we fall right into our routine here, we know everyone here, we know the roads to get to Walmart and the route not to take on daily walks. 

We are currently on day 8 of being in here and a lot has happened. A part of me is apologetic for not keeping you all updated but a part of me understands that I just needed to be present and here for Zackary. With that said I will let everyone in on what's going on, the stuff you have and haven't seen on social media. 

The background-Last year during his hip reconstruction surgery the doctor decided not to do the leg lengthening at the same time and pushed it to this year. As soon as we got home last summer we scheduled it for this summer, knowing we didn't want Zackary to miss any school if possible. It was scheduled for 5/26, a week after his freshman year was scheduled to release. He spent the year recovering from his hip surgery. Honestly, it was the roughest recovery to date and took almost the whole time to build up his endurance. We had xrays showing his bone was growing but his muscles didn't want to keep up. He was in PT still up until we left for this surgery and was finally released for the gym and other strengthening exercises around March, almost 9 month post op. We knew this surgery was coming up but were so focused on healing we didn't think much of it, then the Corona happened....

That obviously changed everyone's day to day life and we spent 6 weeks learning how to home school again while working almost full time for me and doing our best to navigate through the 'stay at home order'. Honestly, we didn't think the surgery would even happen and then the first week of May we received the email confirming it and then we shifted to preparing for being gone for months in just a few short weeks. We, fortunately/unfortunately, knew how to pack for months, plan meals for being gone, and prepping the best we can for living in another state for the summer. We got all the blood work, physicals and xrays done in a timely manner and even added the covid-19 test the day before we left. All was good and 20 days later we faced the airport, armed with masks and well wishes, and made it to Maryland on 5/19.

We spent the weekend prior to surgery settling in to our room at the Hackerman-Patz House, across the street from the hospital, and using our rental car we have for the first week getting groceries and getting the mandatory Olive Garden night before surgery dinner. We also ventured to Washington DC and rode over 40 miles on the rental bikes site seeing, a one day summer vacation I suggest for anyone. 

After the fun came the inevitable; same doctor, same hospital, same waiting room and same nervous feelings. Let me tell you, 27 surgeries and the stomach turning pain never goes away. However, the hospital and Covid put the spin on this episode; There was only 1 person allowed with Zackary and of course we had to wear masks everywhere. So Adam stayed downstairs and provided me food while I waited upstairs praying for the moment every mom needs to feel, the safety of her child. After 5 long hours I got to go into the recovery room and hold the hand of my not so little boy. 3 hours of watching him sleep calmed all those stomach pains and we were right back to the life we knew, ready or not. These are the days of our lives.

 

As much as the last surgery was the worst recovery to date from beginning to end, this one was the exact opposite. He was wide awake and eating within an hour of being put in his room and was barely on Tylenol by the second day. Part of that was because the nerve blocker took a couple days to wear off but also because Zackary is such a champ. We spent 2 nights in the hospital just so they could monitor him and all his equipment could come in. Then on Thursday we rolled over to the HP House and settled back in, and where he's been lying for the last 3 days. 

The doctor said everything went perfectly in surgery. This time they went up through the knee to insert the rod into the femur, so he has more incisions there. This also means he has a little bit different of a recovery when it comes to bending and healing at the knee. PT starts on Monday and is every day until the lengthening process is complete. He has weekly doctor follow ups and xrays to make sure his lengthening is at a safe rate as well. Monday is also the day the lengthening begins. The rate we start at is .2mm four times a day, totaling .8mm per day. His overall goal is between 4.5-5.0cm of length, so if you do the math and the rate does not change (very unlikely) then he will be lengthening for 60 days and we could be home as early as the first week in August. 

I know I speak somewhat like you know what's going on because, well you do. You all have been here supporting him and our whole family for years and we thank you for that. We love the well wishes and feel the prayers working. This is never an easy path to try and explain to your child, especially a teenage boy, but we know this is what needs to be done to make Zackary's life the best possible moving forward. With that said please know how grateful we are for all of your support. I will do my best to give updates and apologize for this lengthy one due to my absence. If you feel so inclined please visit our GoFundMe page as expenses of travel, nightly room rates and doctor bills pile up quickly. Thank you in advance and again, we appreciate each and every one of you. And if anyone has any good movie suggestions we are all ears, as we definitely have some extra time on our hands.

Until next time, 

Momma Miller

PS-To those who have been asking for our address:

Hackerman-Patz House 

ATTN: Miller room 101

2434 W Belvedere Ave 

Building C

Baltimore, MD 21215