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

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

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

 

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

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

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

Until Next Time~
Momma Miller

My Sleeplessness Equals Good News

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

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

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

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

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

Until Next Time~
Momma Miller
















                                      

4 Weeks Down!

Hello All,
     Well we've officially survived 4 weeks here in the 410! (that's the area code for those who don't know) We've been through a surgery, hospital stay, over a week without a car and now we've tackled finally getting into a routine of school, PT and leg lengthening and did I mention I took on a job last week too?! Why not, right?! Roll your eyes now but I'll get into the details about that later.  But first, check out this smiling face that I get to enjoy every day! Why can't we all be so happy when it comes to being in daily physical pain or just dealing with traffic...think about it!

 
   Adam and Matthew came out last weekend and Matthew stayed to day before flying off and Adam stayed for about a week.  He has come and gone and we enjoyed spending a lot of time playing ping pong and even giving mom a day off! We were even able to enjoy a nice breakfast with ballooning friends driving through town at a cute local place that was on 'Diners, Drive-ins and Dives' on the morning we took Adam to the airport. Zackary and I also ventured out on our own this past weekend to enjoy a movie, Zootopia. I highly recommend it! Baltimore is definitely not home but we are starting to get use to the roads, suburbs, weather and culture for sure. Oh and for the record, I miss my teenage boy (yes I said it) and my puppy very much so if you happen to see them please give them a big hug and tell them it's from me!!!
 
     Yesterday we saw the doctor for our second follow up.  The xrays came back great and the doctor was very pleased with the 1.4 cm separation you could see on the screen.  He said since his pain tolerance and flexibility has done great over the last week and a half they will allow him to continue lengthening 3 times a day.  He also mentioned that we will start to be able to see bone growth (hopefully) in the next xray we get in 2 weeks. When it comes to the bone growth we are praying for they upped his protein intake and asked him to be put on Silical; this is a supplement regiment that goes with his daily multivitiman that promotes bone growth.  It's an additional 7 pills a day (and $90 a month) but if he doesn't produce the bone then they will have to stop the lengthening and we definitely don't want that!  Dr H also said that Zackary is a poster child for incision healings and there are no signs of infections so this momma was able to take a big sigh of relief! Check out the growth on the xray....

     Now to that whole job comment...If anyone knows me just a little you know I can't just sit still.  Before we came out here I was working a few hours a week at my store, Buckle, and I loved it and miss it every day!  So, when my sister called and said she needed help doing computer work and answering phones a few hours a day mon-fri I couldn't resist.  It gives me a little bit of focused 'me time' while Zackary does school but don't worry it doesn't take away from our daily ping pong tournaments, weekly Taco Bell visits or anything else that Zackary finds important! :-) Also, even though it's small in the grand scheme of things all I can say is every penny counts. 

     We are one month into our 4 month stay and we are already almost half way through the money we raised before coming out here.  Please know that we are beyond grateful for every dollar that has been donated, they have been prayed over and spent wisely, I promise!  But if I could just take a quick moment and give you a snap shot of what it's like out here maybe you could take the time to spread our gofundme account just one more time, or think of one more person that could help out we'd appreciate it more then words can say!  The home we stay at is about $2000 a month.  That is a lot and we've looked into other places, (hopefully staying with family friends once our appointments aren't daily!) I even toured the Ronald Mcdonald House yesterday hoping that a room available would be worth the move (they are way less expensive and feed us daily!).  Sadly though coming out of there Zackary and I felt that it wasn't a good fit for us.  The hallways were tight and the bedrooms were even tighter.  They were not very wheelchair friendly and every turn we made I either hit a wall or had to pick up the wheelchair to maneuver.  If there ever comes a time when Zackary is in a wheelchair less then 90% of each day we will definitely look into it again!  Also, We are also having to go back and forth with our insurance company because we are only approved for 35 PT visits and we will need an excess of 100 by the time we leave and when insurance stops covering we will have to pay $200 per visit.  At this point it's looking promising for them to cover the next round of the 30 sessions requested but we have no clue when/if the approvals will stop.  These are just a couple of the things we have going financially not to mention food, airfare and other medical expenses so if anything if these could be things to pray about and let people know about.  Again, we thank every single person who has donated up to this point and all the good vibes are felt daily I promise!

    On that note I must bid you farewell.  It's time for lengthening, at home PT, casting and dessert ;-)  I hope this letter finds everyone well and I'll get back with you soon.

Until next time~
Momma Miller
    

2 steps forward 1 step back

 

     If you've ever dealt with medical, or really anything in life, it never seems to be a clear uninterrupted path from beginning to end with no caution signs, detours or peaks and valleys; but to be honest if it was that 'grand' then it wouldn't be life, we'd never learn anything and there's no way we could be as grateful as we are during the good times in life.  As we end this week the good has definitely come with the bad but no matter which won, we survived and that I am proud of!  When it comes to this blog I'm going to be honest so please don't take my updates as ungrateful or angry...it's just life. 
        This week we had our first post-op doctors appointment, another full week of PT under our belts and made it a whole week without a car and Adam.  This week was a little rough emotionally but watching Zackary improve everyday was great. 
   When it comes to PT we received the calendar for April and for the whole month we are scheduled Mon-Fri.  This is not a surprise at all but I think it made it more real to see it all written out knowing this was life for right now.  Zackary has done AMAZING at PT and pushes himself more then he should most days.  The therapists are very pleased with his progress and continue to remind us that this is not the norm and at some point he will actually hit a wall and most likely regress a little and that's why we are pushing him so far now.  I'm also getting pretty good at our in home PT and seeing Zackary stretch farther then he ever did even before the surgery!  This week another thing got added to our schedule (this was the hard part of PT this week). Monday morning he was fitted for a removable cast that he has to wear twice a day for 30 mins each.  This makes his leg stay straight which is one of the motions he will lose first.  He's done great with it and the therapist said that at some point, if he needs it, he will get tighter bands for resistance and possibly sleep in it.  So, this is how you'll catch Zackary twice a day.....

     The doctors appointment yesterday was also full of ups and downs.  After PT we headed to another floor of the hospital and got xrays and a check up by Dr Herzenberg.  He said he is very pleased with the separation of the bone which means the lengthening part is going well, but he's not completely happy with the amount of new bone being produced.  He is worried that the bone could separate to much to where the new growth wouldn't be able to connect so they backed down his leg lengthening sessions from 4 times a day to 3 times a day.  It's not a huge change but it makes it 96 days from today for total 8cm growth as opposed to 72 days.  He did say this is common and if his bone starts to grow quickly then they will up him back to 4 times a day so not to worry.  He reassured us that it's a week by week basis and he has no worries.  We do go in every 7-10 days for xrays and consultation so who knows what will happen on the 18th (our next appointment).  He also was very pleased with his incision healing and his flexibility.  He says that the main reason we would ever have to stop the lengthening process early would be if he starts losing the motion needed in his knee to walk properly.  In his words 'we'll never give up flexibility for length' and in the long run it makes sense.  Here's a look at the xray (same xray just in one photo the growth is pointed out).  It sure is amazing all that modern science/technology can do.

   

     The rest of this week has flown by with a few hiccups in pain for Zackary which sadly we were told is actually the norm and the therapists were wondering when it would kick in for him.  This is so hard to watch as a momma, but we are seeing this as growth and staying on top of Tylenol and ice.  We've also had a lot of fun one on one time and Zackary is quickly becoming a ping pong master (yes he plays in his chair) so if he asks you to play prepare to bring your A game!  Overall the week has been more good then bad for sure, so now we just pray for high flexibility, low pain and great growth!

 

Until Next Time~

Momma Miller

First Things First

     First off, let me start off by saying THANK YOU! To everyone that is in our lives sending love to us one way or another we thank you!
    Today marks the first full week of being released from the hospital and I must say we are leaps and bounds farther along then I thought we'd be.  Zackary is down to tylenol only when he wakes up, right before PT and then bed time.  For the first time yesterday he lifted his leg about 2" off the bed all on his own.  This week coming up with be our second week of mon-fri PT at the hospital and I must admit that I think everyone has already fallen in love with Zackary, but who's really surprised by that?!  Yesterday we also started 'tummy time' for the first time.  I swear we are back to having baby techniques sometimes but luckily I loved that stage and it was something new for Zackary and he says it's a great rest from all the pressure on his back side.  He even got to sleep that way last night and I haven't seen him sleep that hard in a long time!
     Tuesday was the first day that we started leg lengthening and so far so good.  We do .25 mm every session and we do 4 sessions a day.  So by the end of today Zackary's leg will have grown 5mm total.  This is a great start to the 80mm total we are hoping for.
     Tomorrow also marks our first day without daddy and brother.  Adam and Johnathan head home around 2pm tomorrow afternoon and will leave Zackary and I here to spend lots of time coloring, playing ping pong, watching movies and taking walks (well I walk, he rolls).  He is not quite able to sit up completely to do things at a table for long periods of time but we are becoming very creative at coming up with ways to adapt.  He's also very content with wheelchair time in different places doing different things.  I caught him the other day enjoying his first window time...

     This photo embodies all that Zackary is; adaptable, content, accepting, patient, calm and all around great kid!  As long as you feed him taco bell every once and awhile and make sure his electronics are charged he's good to go.  

     We've ventured out to walmart a few times and even started cooking for the first time this week.  Both exciting things after the last couple weeks we've had.  We are starting to do well in rountines and though night shift has seem to become our norm everyone is sleeping well and doing what needs to get done.  

    

Until Next Time~

Momma Miller

   

By the numbers

     In the last 3 days we've had 1 holiday (HAPPY EASTER!), 1 birthday boy who turned 11, 3 days of decreasing pain, 1 day of freedom (we escaped yesterday), our 1st outpatient PT and the close of our 1st week in Baltimore.
     1st on the list to address, our birthday boy.  We did our best to celebrate Zackary Titus no matter our location so he woke up to a room decorated by pictures, a balloon and the play area on the peds floor even gave him a present (the cute baseball blanket you'll be seeing a lot of in the future).  But if you ask him the best part was getting taco bell for dinner! Hey, when your boy requests a birthday dinner you make it happen. Here's a quick glance of some of the decorations he had....

     Zackary was born March 26, 2005 at 27 weeks! He made quite an entrance into the world at 1 lb 12 oz and was in the NICU for a very long 88 days. While he was there it was 2 steps forward and 1 step back though most days it felt like 5 steps back followed by another 2 backwards.  Around the beginning of May we found a staph infection that effected his right elbow, left hip and left ring finger.  It's way more complicated then I care to explain or remember but long story short the staph infection ate away all of his hip joint and femur head on his left side.  Around the age of 2/3 he began reconstruction of the hip and after 19 surgeries before the age of 4 it was looking promising.  But low and behold after his last step of reconstruction the staph infection reappeared and ruined all the progress the doctors had made.  11 years later his leg length difference is at 8cm and grows a little bit each day.

     So our miracle baby is now 5 feet tall and well over 100 lbs! We are so proud of all he has conquered in life and was not surprised at all when we took being in the hospital for his birthday with a grain of salt.  Just to get a perspective here's some 'then and now' photos of him the week his born and this hospital trip.  Yes, that is the same little green alligator in both photos on the left!

                   

       Yesterday was a double day of celebrating; the resurrection of the Jesus and the freedom from Sinai hospital, or at least the ability to go across the street to our 'house'.  Zackary's pain was manageable enough and he proved to the doctors that he was ready to go home.  They cleaned and put on new dressing on the surgery sites (7 incisions), did great at PT and continued to eat like the Zacky we know and love.  By 2pm we were settled into bed and we all enjoyed a nice uninterrupted nap and woke up to FaceTime with my family.  What's not to celebrate?!?!  

      Today we also took an adventure back to the hospital, a new daily task, and had our first PT appointment.  It was more of an evaluation to see the starting point of range of motion and prepared us for the weeks and months to come.  In the next 12 days we have 11 appointments outside of the house, 14 at home PT times scheduled and starting the active leg lengthening procedure tomorrow will be a 4 times daily event.  Pain is still very much an issue for Zackary (we were told it only should last up to 2 weeks) and then he will be more active and smiley.  So needless to say we aren't up playing or coloring yet but we see a bit more sunshine out of him every day, no matter how many days its raining outside...we all know how much I love rain :-(  And in case you needed to know, here's Zackary's style for the next few weeks!

     

Until next time~

Momma Miller

PS thanks again for the prayers and good wishes! We feel them (and need them) every day!!

Ready To Wait

     What an 36 hours it has been.  I hope everyone has been somewhat updated by our family members or my instagram account, but now you get all the fun details!
     Yesterday we showed up at the hospital at 7:15am and was told we would be shooting for a surgery time of 9am though we knew there was one surgery ahead of us.  So after waiting in the waiting room for almost 2 hours they finally took us to the pre-op room.  Zackary loved all the attention and cool outfit and there we sat for another 2 hour.  Good news though, they got his IV in on one shot, something that has never happened before.  Despite the waiting we learned what an amazing staff this hospital has which put us at ease as parents and for Zackary as a patient.

     Once they finally came in and marked to correct leg to do surgery on (one thing you don't want to get messed up!) they gave him the 'happy juice' and before we knew it he was laughing, forgetting and then being swept away to surgery.  I stood there as the doors closed and the doctors and nurses nonchalantly said "he'll be fine.  We'll be out before you know it."  Excuse me?! Can you look a mother in the face and believe that you're telling them that it'll be fine? As of right now my son is in your hands, it's your job to keep him alive! Needless to say more then a few tears were shed and there the three of us were, waiting yet again.
     During our wait they sent us off to a meeting to learn about the new tools we'll be using for his lengthening process, grabbed some lunch and even watched a movie.  May I suggest NEVER watching Armeggedon when you are on an emotional rollercoaster? Yes, those shedding tears came back more then once! After 3+ hours of impatiently waiting for them to call case #2689 I was tempted to yell BINGO when they finally announced it and I was able to go around the corner to see the doctor with a smile on his face confirming that it went 'perfectly' and there were no complications.  But then I was a bit deflated when he said we had to wait another 30-60 minutes before they would let us go back to see him.  I needed to hug my baby!

     I walked in to this angelic face after 4 hours of seperation and I couldn't help but kiss, hug and hold the adorable hand of my brave child.  All was right in the world and I knew our family was going to be okay.  (Yes a bit dramatic but that's truly how I felt).  The docs came by and checked him out as he snored away.  They tried to tell us that we'd be in a room within an hour even though we told them he's never been less then 3 hours in recovery.  About an hour passed and the resident came and listened to him snore like a freight train, wondering how long he'd be asleep.  We knew, and the nurse quickly learned that even though this big boy is lying in front of you he still has preemie lungs.  Guess what we did for 5 hours?! yep, waited! Waited for him to wake up, waited for him to move his toes, waited for his pain to go away and waited for him to get a room.
     After 13 hours we finally rolled into the peds unit and couldn't believe the nice huge private room we had and how sweet his new nurse was.  It was a bit of a rough night with vomiting, 4am blood draws and learning how to manage pain but we made it!
      This morning Zackary informed me that there was no more sleeping at 6am (4am NM time!) and we started our day.  Adam and Johnny stayed the night at the Hackerman-Patts house (HP house) so they got more sleep but adam was in the room by 8am making sure not to miss any visiting doctors or specialists.
     Today started slow but positive.  All his blood work came out good, he had started to hold down fluids and even took a few bites of breakfast.  He continued his pain meds on a PCA (pain med pump hooked up to his IV), got multiple doses of antibiotics but was still pretty groggy.
Believe it or not, less then 24 hours after surgery he was already in PT (physical therapy).  They came in and had him bending his leg, very minimally, and even got him into a wheelchair where he got to sit for a few hours.  It all looked extremely painful to me but Zacky sure was a trooper.
     As the day progressed so did Zackary.  Pain meds were being used less and vitals kept growing stronger.  He became more lively and even ate a whole lunch.  I'm thinking pizza should've been his first meal and we wouldn't have had any problems ;-p He has also, in the last hour,  been taken completely off his pain and liquid IV and is taking all meds orally and ate dinner in no time! (omelettes for the win this time)  And my favorite progress of the night was I finally got a smile from my baby, something I've been waiting for for these last 18+ hours but boy was he worth the wait!

     He's still not 100% out of the woods yet and the next few months are going to have it's ups and downs but here's some things we do know and always could use prayer about:

• He is still not cleared from the possibilities of Staph infections until 6-8 weeks post op
• He will have 50-80 days of active lengthening starting middle of next week
• He is scheduled to be released on Easter Sunday

     There will be more to come on lengthening details and PT successes but for now I think I've bombarded you enough with info.  Plus you know there will be a birthday boy post tomorrow about my brave, strong, inspirational and amazing son!

Until next time~

Momma Miller