Formed By God: "Create in me a clean heart, O God; and renew a right spirit within me." (Psalms 51:10)

Last Sunday we flew back to Baltimore to have Gracie's cast removed. Monday was such an exciting day because we literally hadn't seen our baby girls leg with NOTHING attached to it since early March. I was a little concerned at how she would do with the cast saw, (we'd seen some kids serious freak out over it)...but she did great. She was very intrigued by the whole thing, and just sat there and let the tech remove her cast. When they started pulling it apart, and she saw her leg, she giggled. Seriously, she giggled. I guess I never really thought she'd care one way or the other about seeing her leg...but she was excited too! AND...we can now put shoes on BOTH of her feet. This may not seem like a big deal, but we are beside ourselves with excitement over it!! She hasn't been able to wear shoes without a brace on her right foot because her heel and ankle were such a mess. This surgery corrected those problems, and shoes will now stay on! (Different sizes for each foot, but they stay on)!!!

Dr. Standard says her leg looks great, and that her ankle is very strong. We have to watch out and make sure it doesn't start turning outward again, but with the advancements they've made in these procedures over the years they are seeing a lot less of that, and it shouldn't be a problem. She is not on any restrictions, and we left with her trying to walk down the hall. We have a script for a small lift in her shoe and PT. Right now the difference in her leg is 1". There was just under .5 cm gained by straightening the tibia. Had she not had 2 growth spurts during this process it might have been more, but she's growing like crazy. One thing that we did notice, (I noticed even before the x-rays were taken) was that her knee is starting to turn in. It's called a valgus knee, and its very common with her condition. At our initial consultation, the doctor had informed us that knees are usually very loose with these kids (I think because they are missing so many joints, ligaments, muscles in their lower leg). We were told at some point it may become a problem, and is a relatively simple fix. We weren't expecting it to be this soon, and we were pretty disappointed to hear anything other then we're done for now....but it looks like she will need another surgery within a year. Its called an 8 plate surgery. Basically a plate will be inserted into her knee to keep it from growing in, and push it to grow out, or the way a normal knee grows. It will be removed at a later point.

I'm glad that we have the doctors we have because honestly, even after hearing that we are looking at another surgery soon, I feel so confident in their work, their judgement, and I still end up feeling like we've made so much progress. That being said, it was pretty disappointing to hear she'd need another surgery so soon. One thing I need to realize in this journey, is that we may not ever be completely done. There will be times when she will be able to rest from procedures and surgeries, but even as an adult, she COULD be looking at knee, ligament, hip, and other surgeries that come along with her condition and with years of work and wear on her leg/foot. I know we made the right choice, but lately, I've really been struggling with the fear that she won't agree. I hope, with all my heart that when she is older, she thanks us for choosing this path. Not that it will be easy, or would be whether we lengthened or amputated, but that she would feel, deep in her soul, for herself, that we made the right choice, and it was worth it.

Today's verse is especially significant for me right now. Our family continues to struggle with all the changes going on, and I'm starting to get a little irritated with God. I know I can't stay in this place, but I do feel like I need my heart cleansed and spirit renewed. Thankfully, God knows my heart, and He can do both! We have missed the last 3 or 4 Sundays at church due to Gracie's trips and looking for housing in Idaho. Tomorrow is our first day back and I am so excited. To say I "need" to lay it all out in worship and prayer is an understatement. I can't wait to worship God, despite my irritation, and be renewed and refreshed.

Monday Gracie has an appointment with her pediatric cardiologist. Please be praying that the hole in her heart has healed. If it hasn't, we will be planning a surgery to close it. Its a relatively minor procedure (not open heart, they go in thru the leg), but it scares me. A lot. Also, we would love prayer for our finances. Its getting really challenging, and at least one, if not two surgeries more this year added on are impossible for us right now. By the grace of God, and generosity of so many, Gracie's medical account has managed to last us thru all of our travel up until this point. Right now, its depleted and we aren't sure how we are going to make these last 2 surgeries work. Even with our flights covered (which is a huge blessing), we still have to pay for housing, vehicle rental, food, necessities, etc for each of these trips to Baltimore. Surprisingly it adds up fast.

We appreciate your prayers, thoughts, encouraging notes and texts so much. Thank you for hanging in there with us during this journey. It's going to be a very long road, (a lifetime for Gracie), but having you with us gives us more strength then you can imagine. Your prayers mean more then we can ever explain. Again, if we can pray for you, for any reason...please leave it in the comment section. I will update after Gracie's next appointment.

God Bless!