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