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

More Changes

Hello all, 

Yesterday we had our first post-op appointment since surgery on 7/10 and overall it was good news. First and foremost he let us know we could go home! We've only been here just short of 3 weeks and we're already going home, this is new! Exciting for us and we are definitely ready so Adam is flying in tonight (Friday) and we are hitting the road tomorrow morning. We will take a couple days to get home, it's about 28 hours of drive time but expect a lot of small steps to let Zackary stretch and re-adjust. Wish us safe travels please!

When it comes to Zackary's healing the doctor was not over the top excited but says he's doing fine. His range of motion and flexibility is in a good place, and we will continue PT 2-3 times a week for the next 8 weeks at home. His first x-ray did not show any bone growth though. Not 100% surprised since it's only been 2 weeks but a little bit would have been nice. He let us know that this means he will keep Zackary at 0% weight bearing and toe-touch rules for standing. This was disappointing for Zackary because he knows that means still all wheelchair and walker, no crutches or stairs yet. A fun feat to handle when we are going home to a two story house. The doctor said he only wants to do x-rays once a month and will not increase weight bearing until he sees visible growth. We will most likely fly back to Baltimore for the appointments as Dr H likes to watch him walk, movement or ability once we get orders.

The doctor said he expects Zackary to be walking on his own in 2-3 months. Our goal now is for him to be up and walking on his own to help with the fan and cards come Balloon Fiesta, our favorite time! The doctor also let Zackary know that he was cleared to go to school, just with assistance and of course in the wheel chair. Zackary was happy to hear he gets to go, but not the wheelchair part. But ready or not he's a freshman in high school in just a few short weeks!

Lots of changes are the only way to explain this process and this whole summer but know we are always ready because we know God only gives us as much as He know we can handle. Thank you to all who have supported us up to this point. Please know your emotional support has helped our well being and your financial support has gone towards doctors bills, airfare, room, food, hotels and gas for driving home and so much more and more to come so again, thank you! 

Until Next Time, 

Momma Miller

           

The Good, The Bad, The Ugly

Hello again,
I will start off by saying I'm sorry for not getting an update to you sooner. It's been quite a busy few weeks and want to thank everyone who has reached out to check on us and all of those who have donated to the GoFundMe and sent prayers our way, it has all truly helped us each moment. As the title states there's been a lot of things happening and it's so much I think it will be easier to just list out. As much as I'd love to give you a play by play and everything behind it there is just too much, I'd be writing for hours and you'd be reading for days! So here's the highlights:

THE UGLY:
The Tahoe made it over 2,300 miles to get us here but as we pulled into Baltimore it started making extreme noises and barely gave us a quick trip to Walmart and one last meal before surgery. We had to drop it off to the mechanic the night before surgery and it was at the shop for over a week. Luckily they were very helpful and were able to get a new transfer case. As the mechanic stated, he had no idea how we made it into town as there were many destroyed belts, broken transfer case, loose chain, etc. Let's just say I prayed since the day we left ABQ that the Tahoe would get us safely to Baltimore, God did just that...nothing more, nothing less!

THE BAD:
After surgery Zackary did well with recovery the first couple of days. We were expected to stay in the hospital 2-3 nights, and usually only stay 2 nights. This time he took a rough turn on day 3 and we ended up having to go from almost going home (the HP House) to getting hooked back up to the IV's for fluids because he wasn't eating or drinking and slept almost all day, and was in lots of pain when he was awake. They tested and kept an eye out for infection but everything came back clear. He apparently just needed a couple extra days to recover enough to be on his own and we went back to the HP House on Sunday, 5 days after surgery. It was a long week but we are so lucky to have such great nurses and doctors that don't push anything and did nothing but keep his best interest in the fore front.

THE GOOD:
Ok, so the good is good-ish...I think. As we discussed in the last blog the surgery we were expecting to have was huge, lots of pain, hard recovery and long stay. We met with the doctor on Monday for pre-op and he reiterated all we knew. Dr. H was thankful we could stay here as long as needed but had extended our expected stay from 6-8 weeks to minimum 8-10 weeks. He also let us know the external fixator would be on for a total of 8-9 months, not the 4-6 they had explained over email. This is not the good news, but of course I don't know how to spare the back story, and it couldn't be in the bad category because it didn't actually happen...yeah, there's the good news coming.

Well, surgery day came and Dr. H came in as he always does but instead of marking up Zackary's leg and giving us the 'it's all going to be okay' speech he spent 30 minutes talking to Adam and I about how he had been thinking non stop about Zackary since Monday and just didn't feel good about doing this huge, painful surgery on Zackary. Always great to hear from the doctor...not! Well he let us know there was a different 2 stage surgery he did research on and felt comfortable recommending it for Zackary. And as we always ask the doctor, if it was your kid what would you do? And he said he'd do the new one. Well, he left us alone for about 30 minutes as we took time to explain things to Zackary and then he came back and talked with all of us for another 45 minutes going over pros and cons.

We settled on the new surgery and though the lengthening process cannot be done yet, he has to be done growing in his knee growth plate, we were able to do the hip reconstruction step. It's the same 'Z' process as expected and he ended up putting in 2 plates and 8 screws. This has to heal and when we come back for the lengthening process it will be exactly the same as 2016 with the internal rod and less pain, but a rather long recovery. We will also have to remove the bottom two screws in order for the rod to fit. So, though we will not have the extensive stay or extremely painful recovery as expected we have added another surgery within the next year which will include another long stay out here in Baltimore.

He is now recovering well in the HP house and we are both happy to have a little bit more space and a car to get away from Grub Hub, I actually cooked sloppy joes tonight! He has PT 3 times a week and a post op appointment on 7/25. We had multiple doctors tell us we could go home in anywhere from 3-6 weeks, so there is a chance we will be home way before we ever expected! He will have to complete healing and PT at home as expected. He has 'toe touch' permission and is getting short distances (to the bathroom, max) with a walker and has ventured out for Adam's bday dinner, which exhausted him but it was worth it. He will hopefully be on crutches by the time we get home and should be walking on his own within a few weeks of when school starts!

I told you there was a lot! For now, he and I are enjoying as much as possible out here. Lots of movies, board games and phone games from bed. Still quite a bit of napping and healing for him, and still work happening for me. He's still on strong pain meds but is weaning now. We're hoping to make it out to a movie this weekend, big goals!

As I stated before, thank you for all the well wishes, prayers, and donations. All of the support always blows my mind. You all are amazing. Thanks for keeping with me until the end of this. Maybe this will teach me to wait so long between posts!

Until Next Time,
Momma Miller

Hey I remember you!

"Hey I remember you!" I said as I answered the phone at 8:30am on a Monday. "Hey I remember you!" I was told as I booked our room in a far away place. Hey I remember you...but I sure wish we didn't- didn't have to answer that call, didn't have to book that room, didn't have to be sitting here writing you letting you know about Zackary's newest adventure.
Did you know it's been 408 days since May 16, 2018? That is if you're one of the few reading this on the actual day I posted this (6/25/19). It's has been a very full, exciting, roller coaster of a ride life the last 408 days but I'm sure everyone has had their ups and downs. When it comes to Zackary it has been filled with 408 days without surgery, it was the completion on not one but 3 basketball seasons, the start of public school and ending his 8th grade year with honor roll and being awarded the power of positive thinking award at school. For Johnathan it included his final year of football at Rio Rancho High School, the signing of his letter of intent to play football in college, his graduation from said school and the dropping off of said college student at his new home in Seward, NE where he will be playing quarterback as a Bulldog. Adam and I have both moved industries at work. Though he's still working for General Mills we also joined with an amazing financial advising company named Gateway where Adam has interned and passed multiple tests and is now a licensed financial and insurance advisor. For me, I'm the administrative assistant to a group of advisors and we both love our roles over there. To say the least the last 408 have been anything but dull, but now that you are caught up let me fill you in on what is going on currently.
That phone call I mentioned earlier that I took at 8:30 was from the scheduler of surgeries for Dr. Herzenberg out in Baltimore. I hadn't even heard from the doctor we needed surgery yet, but the scheduler was bright eyed and bushy tailed to do his job. Devin is so helpful and friendly that it took me a couple minutes to realize what he was asking. "Dr H wanted me to reach out and put Zackary on the schedule." "For what?" I asked. He asked me to check my email and there I found that the doctor was concerned about Zackary's latest xray and the amount of daily pain he was in.
We get xrays about once a year to keep an eye on things and usually they just attribute pain to him being an active, growing boy who doesn't have all the normal functions of a regular kid. Basically just learning and adapting which can put a toll on his body. But not this time, this time they were concerned about the 'migration' of his hip and how much movement there has been in his leg and honestly concerned about how much he's growing! A somewhat good concern to have since they told us we would be lucky if he maxes out at 5'8" (He's almost 5'8" now, matching where his brother was to the cm at his age, and Johnathan is now 6'2"!)
Well, they were concerned enough to call us and ask to schedule his next stage of surgery within 5 weeks! When the doctor makes strong suggestions you listen! We went back in our notes from past consultations all mentioning how he would need the surgery around 15/16 and it would be another big one. We knew it was coming but damn if that didn't come faster then any one of us could have imagined and of course it came early, he's only 14, but again with the growing and migrating.
I'll save you all the medical jargon and details and just tell you this; Zackary will be having surgery on July 10th in Baltimore, Maryland at the Sinai Hospital. This is the same place his leg lengthening procedure was in 2017 and where he and I get to spend 6-8 weeks while he heals from this surgery. He will be having a complete hip reconstructive surgery, breaking it in 2-3 places to create a shelf like hip out of his already existing femur and since he will be losing so much length from that they will be doing another leg lengthening procedure at the same time. Unfortunately he is not as lucky as last time to be able to do the internal rod for lengthening, we will have to do the external fixator. This is the halo type apparatus you may have seen that has pins going directly into the leg, connecting to the bone and separating the bone to create the length and regrowth. This is a very painful procedure, long term process and healing process.
His recovery will be 6-8 weeks of lengthening, in Baltimore, to include weekly doctor visits and daily PT. Then he will have another 2-3 months at home, though there may not be any lengthening, he will still continue PT for a total of at least 4 months of no walking. Even though we've been through it before it's never easy, it's always scary and you can never be prepared enough.
But hey, remember that awesome company Gateway I was telling you about? They are letting me work remotely while he recovers and of course Adam will do his best to make it out for a few visits and hold the fort, and puppies, down here at home. Johnathan...well, he'll still be annoying his brother via phone just from Nebraska instead of New Mexico. And what could we ask for from you? Mostly and most importantly prayers. For each of us in our own ways of needing it, for the doctors, for the safe travels as we drive to Baltimore, for sanity, for patience, understanding, all the good stuff! I will let you know our GoFundMe account is still up and running and we could use all the help you can provide and thank you in advance for your help. We have a little saved from the last round of surgeries to help fly Adam home to work after surgery but of course food, housing and medical bills add up quickly, so thank you.
Thank you from the bottom of my heart for all the past, present and current support. We would not have made it this far without you. And thank you for sticking around to read this whole long blog! I mentioned somewhere I'd spare you the details...maybe next time!

Until then~
Momma Miller

What a week...and it’s only Wednesday

Hello all,

I come to you from the Hackerman-Patz House, our home away from home. As I sit here watching it rain yet again, a daily thing here, I realize that’s the worst thing that’s happened this week! It’s been a long week for sure but overall it’s going okay. Sunday was Mother’s Day of course, happy Mother’s Day to all you amazing super hero’s raising kiddos! We went from camping in the morning to home to pack and on the plane in enough time to be in Baltimore for a late dinner. Minus a little turbulence everything went smoothly. 

Monday brought our pre-op appointment with Dr. Herzenberg. We took a ton of X-rays and talked for almost an hour in total. The X-rays were taken to see growth plates, current leg length discrepancies, and to check the rod that was in his leg.  We then sat down and talked with the doctor and left feeling confident that we’ve set up a good plan for Zackary. He said due to nerves and muscles that run from the hip down toward the knee, Zackary complaining of pain in his lower femur could actually be displaced hip pain and he had hope that removing the rod would stop most if not all of the pain. He also said he’d be giving him a cortisone shot in his hip, when taking out the rod, to help with pain management. He confirmed as well that the bone looked dense enough for there to be no concern of removing the rod and Zackary being the active boy we know he wants to be with a little bit of PT. 

Once we decided what was going to happen this week we moved on to what the next few years looks like. He talked about different options, I won’t go into great detail and bore you but there’s options of internal and external hip reconstruction surgery. Each has pros and cons but after consulting with the dr and Zackary we’ve decided internal will most likely be the route we will take. Looking back at the X-rays again and taking measurements in addition to knowing Zackary will lose some length in the hip reconstruction the dr let us know we will have to do another round of leg lengthening before we even begin the hip osteotomy. It was always a possibility but he made it very clear that it’ll be a must now, but only for about half the length as last time. Looking at his growth plates and estimation of natural stopping point of growing at the age of 15 it was decided that the leg lengthening will happen in 2020 and the hip osteotomy to happen in 2021 once the lengthening procedure has healed. He let us know we can continue to cortisone shots to help with pain if the rod removal doesn’t help enough and that he has a doctor he trusts to give the shots in the Phoenix area! 6 hours from home seems like a hop, skip and jump compared to here! So that was some encouraging news too. 

Tuesday morning came all to quickly after a late night at our annual Olive Garden pre surgery dinner. We made it to the hospital around 9:30am with 11:30 surgery time scheduled. After being taken back to triage the first doctor let us know the surgery had been bumped to 11:45. Then we finally saw Dr. Herzenberg about 12:15 and he said hopefully before 1pm. Then about 1:20 they came in and took Zackary back. He was a trooper like always only complaining about being starving every few minutes. A fair statement since he hadn’t eaten in over 12 hours. They gave him his ‘happy juice’ cocktail and before we knew it he was loopy and we were giving our good bye kisses. One hour later Dr H came out and let us know the rod came out very smoothly, he had it in hand since Zackary requested to keep it. He also let us know he did the cortisone shot in the hip and a couple other shots of pain management in his leg that should last awhile. This made the momma in me very happy, I hate seeing him in pain. An hour after that we were able to sit by his side in recovery while he woke up and before leaving the hospital, though very drowsy, he was already taking steps to and from the bathroom! He spent the rest of the day sleeping at the HP house and spent the whole night eating once he woke up! 

Today has included eating more, playing video games, watching tv and playing ping pong! Yes, playing ping pong, with no assistance! He’s walking everywhere with no pain or crutches. I’m keeping him on Tylenol and asking him to take it easy but if anyone knows him you know nothing slows him down! We’re very lucky with how smoothly has gone the last couple of days! We will stay here a couple more days just to keep an eye on the incisions and make sure he’s healing well before heading home on Friday. Thank you to everyone who’s helped on this trip with prayers, finances, good thoughts, texts and calls. They all, and you all, mean so much to us. Thank you!!!

Until next time-

Momma Miller 

A Rough Start to Mother’s Day week

And the award for greatest mom goes to...any one but me. When you’re a mom of a child with special needs it doesn’t take long to never notice the difference in day to day life. I don’t see the limp, or get surprised by the constant request for Tylenol or warm baths. I don’t second guess taking breaks while walking long distances with him or ever forget which direction the wheelchair and walker fit in best in the trunk. Heck I’ve even gotten real good at ignoring all the medical bills that seem to constantly fill our mailbox! Life is what it is, you never question you just adapt and move on, do your best. Then there are those moments when reality sets in. You catch yourself sitting on your teenagers bed (yes he’s 13 now!) rubbing his back as he sobs asking why. Why another surgery? Why him? Why did he have to be born preemie and get sick? Why can’t he be a normal kid like everyone else? Why has he missed his last 3 big birthday plans because of surgery or pain? Why can’t it stop? And that’s when I realize I’ve lost the worlds greatest mom award. I don’t know why, I can’t fix it and I can’t make it go away. Life sucks and it’s okay to cry. That’s about all this mom can come up with as I cry right along side of him.

The tears I speak of began today, Monday, this after waiting over 2 weeks to hear from the doctor on a reading of Zackary’s last X-rays. When I last updated you all Zackary was having horrible pains in his left leg right about where the rod ended in his femur. The doctor diagnosed an unseen stress fracture. This is common in kids with the rod placement and he had told Zackary little to no weight bearing for 4-6 weeks with a follow up X-ray. He let us know we could always see the healing of the stress fracture on an X-ray even if you couldn’t see the original fracture. He also said the pain would go away as it healed, just like any other break on someone else. Well Zackary impatiently waited for the 6 week mark only forgetting a few days in between that he was suppose to be using crutches and his walker to get around. Well the day finally came and he started walking, only to find about 12 hours later he was in so much pain he put himself back on the crutches. This was not a good sign. He went back and forth between weight bearing and not with still a lot of pain while we waited for the X-ray results and we finally got word back today. 

The X-ray didn’t show any fracture, healed or not. The doctor immediately requested rod removal and contributed all the pain to the rod still being in there and his overall hip/leg issues. This means he will be having the rod removed on Tuesday May 15th, yep a week from tomorrow, in Baltimore. We will also have our pre op appointment on Monday where the doctor has requested we discuss the hip osteotomy potential after having many X-rays and other tests run to see if the lack of hip and other bone issues are the cause of the pain. This is the main, big surgery we’ve always known was coming around age 15-17 but could now potentially be a lot earlier. As we know with all things medical anything could happen at any time but at this point our main focus is to relieve as much pain as possible for Zackary so maybe the days of needing elevation, heat, daily Tylenol and warm baths will be fewer and far between as compared to the almost daily struggle they have become over the last 3-6 months. 

So I may not be the greatest mom but I know I’m trying. I may not have all the answers but I know we’ve got him the best doctors possible. I may not know why all this happened to such an amazing, loving, incredible kid but I know my God has big plans for him! So, while you read this go hug your kiddos and remind them life sucks sometimes but it’s okay to cry. With that said I will gladly take the title of worlds okayest mom because I’m doing my best and that’s all us moms can do! 

I will update you all next week once we’ve talked to the doctor and we have more information. Until then, thank you to everyone for your continued support. This is definitely an unexpected, and costly, last minute trip so if you wanted to check out our GoFundMe page again please know all money will go toward hotel, food, medical bills, etc. Thank you in advance for your love, support, well wishes, positive thoughts and prayers. This okay mom could really use them. 

Until next time~

Momma Miller 

The Not So Joyous Side of Parenthood

Do you know what it’s like to not be able to guarantee your kid that this plan the doctor has will make the pain go away? Or not be able to promise him no chance of surgery if we do this treatment? Or how about not even being able to give him the answers he deserves or even a time frame of when we can get answers?
As a parent your number one job is to protect and love your child by any means necessary and I would take a bullet for him an an instant! Yet here I sit in tears because I am just as helpless as he is. I can’t help him. I can’t give him answers. I can’t make promises. I can’t protect him from the pain.
Now you’re probably asking yourself what I’m crying over right? Well Zackary has been complaining of pain in his lower left femur for the last 2 weeks. This is the leg where the leg lengthening was done and the rod is still placed in. At first we thought it was usual soreness from pushing himself to the max by the end of the basketball season, yes he just finished his 9 week basketball season and did awesome in every game! Then maybe we thought it was from all the weather and pressure change here in the ‘desert’, we’ve worn flip flops and shorts one day and beanies the next with days of rain to boot! But after a week of pain that pushed him to Tylenol multiple times a day with heating pads and warm baths whenever available we knew we had to reach out to his doctor in Baltimore. Zackary is saying his pain is at a 4 out of 10 most days. For comparison this child has the highest pain tolerance I’ve ever seen and usually puts day of/after surgery a 5-6 out of 10 and he hasn’t taken pain meds since coming home from Baltimore even when snowboarding or pushing himself to the max doing boy things.
So once we reached out to the doctor they requested blood work and X-rays just to make sure there was no infection but of course with back and forth via email with doctors it takes a few days and then it was close to the weekend and with our hectic schedules we barely got it done yesterday. Well when I let them know it had been complete and the pain was still there they insisted to put him on crutches and walker to reduce weight bearing to max 20%, preferably none on the left leg in case there is a possible fracture since the original guess of infection shouldn’t have been this long lasting nor had it shown any infection like symptoms (fever, swelling, etc).
Now here I sit just having told happy go lucky and as active as ever Zackary that he has to be put back on the walker he loathed for so long just a few years ago. He asked if this would heal him, I don’t know. He asked if this would prevent us from having to go to Baltimore, I don’t know. He asked if this meant he was going to need surgery, I don’t know. He asked when we’d have answers, I don’t know. The doctor will have the X-rays by Monday but he’s taken up to a week to read them and get back to us in the past, so maybe 2 weeks, I don’t know. The hardest thing as a parent to tell your child is I don’t know and I can’t fix it. As much as I would give my own life to fix this I just can’t.
You may be asking why I even tell anyone about this if we don’t know anything yet and my first answer is I don’t know. LOL But secondly I know it’s because you guys have been there the whole journey and if one prayer or good thought or positive vibe changes this all into nothing for him then I want everyone together to have been a part of that. So please, pray, encourage and think positively for Zackary. The most important thing right now is to get answers. Whether it be a need for surgery or meds or anything we just want answers. I want the pain to go away. Of course if it turns into anything I will update you all ASAP but for now thank you. Thank you for sticking by our side, for listening, for reading and for hoping for the best for Zackary Titus!

          Until next time~
          Momma Miller 

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

Putting your best foot forward

Hi again! Remember me, I'm the momma who seems to run out of minutes at the end of every day before having time to write a new update but as my amazing boss likes to say you either have excuses or results so here I sit refusing to get up until this update has been written. It does help though that I'm on bedrest and can't really get up, but more on that later......
Zackary has been doing great, I mean truly amazing! His pain level is a little higher each day but that is because he continues to push himself so hard each day, he even has a work out routine he does on non-PT days that puts my workouts to shame!
Just shortly after the last blog we had another set of x-rays be taken and shipped off to Baltimore for the doctor to read just 2 short weeks later (HA). I think I'm starting to see a pattern here. Anyways, I received the email that stated 'Zackary is now healed medially, anteriorly and posteriorly.  He has a little more to go laterally but that has improved greatly as well.' After reading to the therapist he informed me this was fantastic news! Yeah, you'd think I'd be use to medical lingo by now but not quite. For those on the same page as me it means the bone is healed 75% around the rod (front and sides) and only needs a little more growing on the back side of the bone. Why they couldn't have just said that is beyond me. The next part of the email was my favorite though and didn't need any interpretation. 'He can now be weight bearing as tolerated.' SAY WHAT?! It was so nonchalantly added in there like this wasn't the news we had been waiting for since March 24th! Weight bearing, walking on his own, no walker, no crutches no nothing! We were so excited! Zackary's first response was 'so I can throw my crutches away and just start walking?' Not quite, you haven't walked in 7 months it's not going to be that easy. Johnathan's first response 'So I can tackle him now?' NO! Luckily the last line of the email said 'Still no sports, running or jumping.' They must have known they were talking to a house full of boys. LOL
The days and weeks to follow since that news have not always been sunshine. There were tears when he came to the quick realization this wasn't going to be as easy as he thought. The therapist asked him to balance only on his left leg, this is something he couldn't even really do prior to surgery. He couldn't even hold it for 1 second with the goal being a 30 second hold by the end of the year. I'm proud to say he's up to about 2-5 seconds depending on the day and he's moved on to single leg presses as well! He truly is the strongest kid I know on so many levels. He has started on only using one crutch when he's at home and taking 1-2 steps between couches or bathroom with no assistanace and is working on losing the limp and teaching himself that he no longer has to walk on his toe, a habit he's done since birth.
Since the last time we connected we also had Halloween, one of our family's favorite holidays. I had been dreading it for awhile not wanting Zackary to feel left out. I cried as I made a post the neighborhood website. It was hard having to ask everyone to park their cars with enough room for a wheelchair to make it through and teared up every time we passed a house with stairs that I knew he wasn't going to make it to. Well one day my sister and I came up with a great idea to incorporate his wheelchair into the costume and made it a whole family affair! And of course, though there were times his cousin had to bring him back candy from houses he couldn't reach, we still had enough candy to feed a whole town by the time we were done! It was a great night with lots of laughter and sugar. So may I introduce to you the X-MEN, Miller style!

Magneto, Rogue, Cyclopes, Beast, Storm and Professor X 

   

Halloween came and went, we finally figured out a great schedule with PT, work and school and finished up Johnathans football season with them going 6-1 and we are anticipating a state championship win from the Varsity team that went 8-0. Needless to say things were going smooth. I didn't think that was ever going to happen. Then came November 6th. Our lovely family walk turned into a hot mess real quick. While sitting on the curb waiting for his command to cross the street Dakota, our 110 lb lab, wagged his tail excited to catch up to dad and brother who had already crossed the street. Right as I gave the command to go my foot went down on his leash lying on the ground. I knew it was too late and did my best to fall as safely as possible knowing his leash was wrapped around the leg I just had surgery on less then 2 years ago and I wanted to keep all that hardware in tact. Well, I did manage to save that ankle with just a bit of rope burn but came down twisting and with all my weight onto my right ankle. Snap, numbness and screaming is what filled the next few seconds. Instantly I knew it was broken (a talent I mastered over the years). The ER confirmed my break and was put in a splint and had a doctors appointment the next day. After the doctor explained this as a very strange break and something the assistant had never seen before (what can I say, I'm talented!)

They had me scheduled for surgery by the end of the week and have filled this week with 4 doctors appointments in addition to Zackary's PT appointments. The healing process has been so much more difficult and painful even though this was a much less invasive surgery then last time. We are still trying to clear up a few issues but overall the procedure was a success. I've been on mostly bed rest for over a week and a half now and we have double the amount of medical equipment!
Luckily we've had a lot of help with family to drive to and from appointments, bring us food, pick up and drop off Johnathan and every once and awhile get a dish washed here and there while Adam continues to work and Johnny goes to school. I've been told this has a quick recovery as well so I should be walking in about 4 weeks from the surgery date. Also, I'm only in a boot not a cast so I'm happy about that! This means I'll be on crutches for Thanksgiving and will hopefully be walking by Christmas. Our family motto was always 'we'll be back to normal by Christmas' but I never had us being this far from normal at this point!
Well, with xrays for both of us in about 2-3 weeks there should be an update about that point. If anything I promise to update prior to Christmas because we know how much you guys support us with your prayers and thoughts and you deserve to be as updated as possible. Have I told you lately how much we love you all and thank you for your support?! Well we do! With that said, it's time to get back to healing!

Until next time~
Momma Miller