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