Friday, May 2, 2014

"Trust in the Lord with all your heart, and lean not on your own understanding; In all your ways, acknowledge him, and he shall direct your paths." (Proverbs 3:5-6)

 I haven't been very good about updating the blog. I find myself trying to avoid it actually. This blog is like therapy for me in some sense, and since I'm always honest here, I think just having to face what bothers me sometimes is hard. But, with us living in Idaho and most of my family and friends being in Arizona, I think it's even more important for me to keep this blog current. Gracie's treatment plan is constantly evolving, and she's growing so much....I don't want to take away from that by only posting every few months....so....hopefully I can be a little more consistent with it.  

So far this year has really been very busy for our family. In February we purchased and moved into a home here in Nampa, Idaho. Yay!!!!!!! We were so excited to be back in our own place, have more room and really unpack. (Well, to be honest I still have some unpacking to do...but not much). We went back to AZ in March for spring break and my moms birthday.  That was Robert's first trip back and it made us all very homesick, but we had such a good time visiting family, friends, and our church. Shockingly enough my birthday came around again in April. I still can't believe I'm just a few years from 40. People ask me how old I am and I have to ask Robert because when I say 36 it just doesn't seem right. :). Landry is doing great at school and we are so so blessed that he is in a local Christian school here.  He is developing such a deeper understanding and relationship with Jesus it just fills my heart. He has become quite the little prayer warrior too.  He has been laying hands on people and praying for them.  I know we are just the lucky ones God gave him to, but I love him so much and am so proud of him. 

Gracie is doing pretty good. She is growing like crazy and has such the personality. Sometimes I look at her and think she is just as feisty as my grandma was, and then I think I was such a snot with my attitude when I was little that I'm really in for it! :)  Twice a month she has physical therapy and it has really been huge for her.  Her confidence has just soared in what she feels she can do, and her abilities are increasing. She still really struggles with balance, but it is amazing to see her progress in areas that are challenging for her. She is jumping, getting better at going up and down steps, running and trying to climb everything.  We have a long way to go, but I have no doubts she will get there.  We are visiting Shriners of Spokane in May to see if we can get her covered with assistive devices under them. This would help us get her much needed braces, lifts and inserts. Her foot is turning in, and almost dragging because of the missing tendon, so this brace, and this years surgeries are important. 

Gracie was supposed to have her 8 plate removed from her femur, and a tendon transfer done this week. Unfortunately we had to postpone the surgery due to lack of funds. We also received the unexpected news that there may need to be another plate placed in her tibia, (based on latest X-rays), but the final decision on that will be made in the OR when she has her surgery. This news means that instead of 1 surgery and 3 visits to Baltimore this year we may end up having 2-3 surgeries and 4-5 trips to see her surgeon. It's been hard for me. The unexpected surgeries always hit me hard. I'm starting to recognize a "pre-surgery" cycle, but I've been struggling lately. We just really thought this year was going to be one surgery and then a couple years off, and I'm realizing that every time we work to fix one part of her leg or foot, it highlights problems or deficiencies in other parts. It's just such a complex condition and I really don't think there is ever a break. There is time between surgeries, but there will, for most of her life, be a need that will be met via surgery. Even the older kids and adults in our FH world have "maintenance" surgeries. It's had me wrestling with the idea that maybe we should have chosen to amputate her leg. I still firmly believe we made the right choice, but it is so hard to go thru this every few months, to put HER thru this every few months and not question yourself sometimes.  It is so hard on everyone.  We are financially maxed out. We don't qualify for any aid in any form, and the hospital changed their financial aid acceptance and we no longer qualify for that.  I'm trying to be the "squeaky wheel" and keep pushing but when we are in surgery mode, it's a constant battle and it is so overwhelming and exhausting.  There's no doubt Gracie is worth it, but as her parents, the toll this takes on Robert and I, is hard. I am so blessed  to have the husband I have....I couldn't imagine going thru this without him. 

I've heard that it should eventually get easier to hand Gracie over, to keep doing surgeries. I think that's not really an accurate way to describe it. The process, the preparations, and the mental understanding of what is happening may get easier. I think post-surgery might even get easier, because in all honesty, the craziness of taking care of Gracie in the hospital, during recovery, handling her meds, her therapy, and wound care...that's almost a welcome distraction. I'm too busy to worry or feel anything but what needs to be done.  It's almost a break for my mind. But the pre-surgery experience still causes high anxiety for me. Handing her over to a surgeon I have complete trust in, over and over and over, and realizing it's not gonna end.....that does not get easier.  It actually rips my heart out to know, no matter how good the outcome may be, that we are causing her pain.  That we are putting her at risk with each surgery, and that I can't take the place for my baby girl. Hearing about kids who have pain, chronic issues, or choose to later amputate is so hard. This has really been an impossible decision for us. There is no right or wrong. No parent could easily chose to amputate or lengthen. They are both miserable choices. It's hard. 

I know Gracie is not defined by her surgeries or condition. At least not yet. She is thriving and is a very, very happy girl. That gives me a lot of peace. Her surgeons abilities gives me a lot of peace. The support from my own private world of FH friends gives me peace. My family gives me peace. Friends who barely know Gracie offering to fundraise or lift us in prayer gives me peace.  Knowing that God can bring good from ALL things, gives me peace. Some days, none of that is enough. Some days, the thought of what we are facing, the mountain of medical bills, the insurance world, the pain, the fear...it takes over and nothing helps. 

We recently heard a service from a pastor out here about not worshiping our circumstances, but worshiping God. Keeping focused on him with continuous praise and worship in the midst of your pain....that victory is there, just beyond that. Far too often I worship Fibular Hemimelia and what it has done to my baby girl, our family and myself. I may not ever understand all this, but I do believe that if I can keep my trust in God, acknowledge the many blessings He's given us thru this, He will show me how to over come this, how to afford this, and show all of us how to survive this. He will direct our paths. I'm so grateful for that because when I'm in the midst of these storms....I can't see the path on my own. 

Please remember, if you are going thru your own storms....trust in Him....He will guide you, He will direct your path. He sees all, and knows better then we do all the whys and what ifs....and He loves you. So much deeper then any love you can imagine.  Easier said then done, trust me, I know. But so worth the fight over your mind to get to the places of peace He has waiting for us. 

Prayer requests:
-that we can get the funds for her surgery and get it scheduled soon
-that Shriners hospital can help us with braces, lifts and shoe inserts
-that Gracie continues to progress
-that we have peace about all this 

Here are some pictures of Gracie, and a video of her at the park the other day, (if I can get it to load). It shows the benefits of therapy and parents who keep encouraging her to try....to get back up when you fall, and try again. Hope you enjoy it!!!  *****check out our Fundraisers tab to see the latest fundraising information!!!*****


Gracie praying



Video of Gracie at park



Cute in pig tails

PT. Just balancing to take this step without holding on to anything is amazing progress!


My handsome boy!

Praying for Gracie's fat lip

Loves to climb! 
Amen!!