Sunday, August 23, 2015

"For with God, nothing shall be impossible." Luke 1:37

It has been far too long since I updated everyone on Gracie.  To my defense, (lol), we did have a major surgery, out of state move, new rental, new schools and new job to work around.  I am finding I have quite a bit less time then I used to, so while I have a free moment, I wanted to get this done.  I have also been avoiding it a bit because all these things at once has been quite overwhelming for my family and I just really haven't wanted to talk about it. 

But, its time.  Gracie had her surgery in June.  Everything went fairly smoothly.  There were some other issues we were concerned about, and once we had the chance to address them with Dr. Standard, he felt they warranted surgical attention as well.  This was no surprise, and they just added them into the surgery they had already planned.  All in all, Gracie ended up getting the Tibial Derotational Osteotomy, a huge plate to hold the osteotomy together, another 8 plate put into her upper tibia by her knee, a screw in her ankle to help stabilize it, the screw from the tendon transfer cut and shaved down, and her ankle bone contoured with grooves created to hold her ligaments.  We had our favorite anesthesiologist (Dr. Pepple), and you could definitely tell the difference.  She came out of anesthesia amazingly well.  The epidural was perfectly placed and she really did so good in recovery.  We actually had her in the play room either later that night or first thing the next morning. She went to the play room a couple times, and did fairly well changing from the epidural/IV meds to oral medication.  We did have some rough moments, where she was crying telling me how much it hurt, and one really rough night, but honestly, she did amazing. There was some adjusting that needed to be made on her medication, which made a huge difference in managing the pain, and then we were released on the 3rd day to go to the HP House.  

Typically Gracie recovers pretty quickly from her surgeries.  This surgery however, was the most invasive/complicated surgery she has had since her initial super-ankle done at 18 months.  This was a very traumatic surgery for her body, and recovery really showed that.  Her age and level of understanding has also changed how she recovers.  She had a lot of fear and anticipation of pain, which held her back.  Before she didn't know any better to "anticipate pain," and she would go until she was sore, then stop.  This time around she didn't go at all.  It took her 4 weeks to walk, and that was only because she was so excited to see her cousins.  It was 4 weeks of carrying her or strolling her everywhere we went.  Four weeks of watching our daughter figure out and learn how to walk again.

When she had her external fixator, it only took her 3 weeks.  This time around, recovery was probably the biggest hurdle.  The meds to help her her bowel movements made her puke every time she took them, and she really struggled with the oxy and baclofen (valium-like).  We did get her weaned off the meds fairly quickly and it worked well for her, which was so nice!  The long leg cast, (from crotch to toes) was such a pain!!!  That is now off, and she is walking around well.  She does have some range of motion and flex issues from the surgery and the cast, but once she is cleared for PT, I imagine that will be our focus.  We are a bit concerned because we are seeing her walk on the side of her foot again (which was the reason for the screw), but we have contacted her surgeon and are waiting to hear what they suggest for that.  (Videos and pictures were sent so they could get a good look/idea at what we were seeing).  

For me personally, I noticed that this surgery was much more emotionally difficult then the others have been.  Pretty much on the same scale as her first.  They are all hard, but I really struggled with this one.  Post surgery though, I am happy to say, I am finding routines that work good for me as her care giver and that helped me through some of the post surgical hurdles.  We are just enjoying our time with no surgery, no restrictions and no cast right now.  I have noticed that both Gracie and I are getting better at not hanging on to surgery as a lifestyle and moving right into our "surgery free enjoyment time."  Its hard to explain, but after surgery, there is an emotional lull where you just feel like this is never going to stop.  Even when she's running around, happy, I would look at her and think, "oh, but we have more to go."  Which is true, but not productive to enjoying whatever time off we have.  Once the next surgery was schedule I would start the entire process of being so heartbroken for her again.  Even months before the surgery.  I would watch her on the playground, recovered, and playing and think about how horrible the next month was going to be for her.  Missing the blessing of watching my baby girl playing happily.  Its a strange cycle, that has taken me a while to recognize, but this time around, I noticed it, and have done so well to bask in how good she is doing right now.  No worries about future surgeries.  (Well, a little concerned about what we're starting to see, but overall much much better at just enjoying our free time for her to be a typical 3 year old).

The move itself, has taken a toll on all of us.  The kids have adjusted very well and seem to be doing good.  Landry loves his new school, (I love his teacher), and is doing really well.  We are getting ready to sign him back up for football and basketball again, which he is really excited about.  Gracie was not ready for school because she was not potty trained, so she is being home schooled by my mother.  My mom is doing an amazing job and Gracie has already learned so much...along with being probably 95-98% potty trained!!!  Its so so nice to see some improvement in that area.  I have started working full time, which is good.  Honestly though, it has been extremely challenging to manage what I did while home, on top of a full time job.  I know people everywhere do it daily, but I could truly take just Gracie's medical care (school related, speech, bills, insurance, docs updates, PT, xrays, follow ups, etc.), and have a full time job from that alone.  Figuring out how to squeeze that in to the 2 hours I have before I have to get the kids fed and to bed after work, and the 4:30am wake up I have to get Landry to school and me to work....has presented a challenge.  I am doing great with work, but I miss being home and taking care of the house, cleaning, cooking and handling Gracie's medical stuff.  I'm old fashioned that way I guess, but if I had a choice, THAT is what I would do.  For now, I'm praying for God to give me extra hours in the day, and a way to still get these things that MUST be handled, done.  One way that will happen is having my mom take Gracie for her next set of x-rays.  I totally trust my mom to be able to do this, she's gone with us before, and Phx Children's Hospital is amazing at it.....but it truly just breaks my heart to not be able to take my baby girl and do this.  I don't want anyone else to be her caregiver.  That's my role and its strange to hand parts of it over.  Gracie is also getting ready to try out a dance class (to see if she's interested in taking dance lessons), and I will miss that.  (But I am super excited to hear how it goes).  These are things I have been blessed to be able to do, and now I'm missing.  I'm really struggling with that.  But, very blessed to have my mom near by to help.

Robert has started his new job and is adjusting to the feelings and emotions that come with all this change.  I really think that having major surgery, an out of state move, new home, new schools and new jobs was just too too much for all of us.  We are slowly settling in, adjusting to our new life, and are super excited to be back around some family, friends and our church...but its still a lot of change.  That being said, there is a lot that feels impossible right now.  Finances feel impossible, struggles with Gracie's IEP process feel impossible, new concerns on her foot, balancing my new role, Robert balancing his new roles....it all feels impossible.  Its just too much right now.  So I am holding tight to this verse.  I know and trust with full faith that because we are in this life WITH GOD, nothing....NOTHING is impossible.  I hope you are able to focus on that this week and let it give you a little reprieve of freedom from your own struggles.  We can do anything, we can overcome anything, and we can survive anything WITH GOD!

Prayer Requests:
~prayers that Gracie's xrays look good and we get good news from Dr. S on her ankle
~prayers that we continue to settle in and adjust well to our new roles/lifestyle here in AZ
~prayers that I can adjust to the AZ climate again.  (seems crazy, I know, but I am desperately missing Idaho weather)
~prayers that Gracie's IEP can be developed with HER best needs in mind
~prayers that our finances would improve as we work to pay off some debt and balance our huge stack of continuing medical bills
~prayers that I can find a disability lawyer to help me get Gracie approved for disability so we can get her medicaid.  (its the only way we can get her on medicaid).
~prayers that God would provide a new home for us, that we would be able to own or rent that is in a better area by the time our lease is up.  (we prefer to own).
~prayers for confirmation of an idea I finally got for writing a book (everyone has been telling me I need to write a book, and I could never figure out what to write, but I finally have an idea...just wanting confirmation its from God).

I truly believing that praying for others is something we are all called to do.  Even with everything going on, I have such a heart to pray for others.  Please let me know if there is any way we can be praying for you.  I can be reached here on the blog, or on facebook at See Gracie Run.  Thank you for your prayers for our family....they move mountains for us and we appreciate them so much!    
She was so happy Grandma was there!

Seriously, a pre-op PRO!
Our traditional "happy juice in full effect photo!"
Recovery/Post-OP
There are no words for how much I love this girl!

Distraction can be great medicine!
My bionic baby girl's leg!

For those who find this intriguing...if you zoom in you can see where they cut thru each bone!




She looks happy, but it was HELL getting her in the pool.  Once in she realized it wouldn't hurt and relaxed a bit.  For about 5 minutes.  LOL!

Recovery is hard work!

Preschool at grandmas, but I still HAD to take this picture.  She was so excited and is so ready to learn!

It's amazing to see her leg this straight and her foot this straight. 


Getting her to drink after surgery is so much easier when we make a game of it!