Update post surgery...

I know a lot of you have been waiting for an update; so sorry for the delay!  Amelia's surgery went well!  Praise the Lord!! However, her doctor only did the left leg because it did end up being very complicated - he said it was about as difficult as it could get, but he was ready for it!  Her stats, including her blood pressure remained stable, so prayers answered there!  She had a lot of nausea and vomitting after surgery until about mid morning today.  She also started with a lot of pain in post-op already saying her cast hurt :( and he even put an epidural in to numb that area, and it's still in.  But, she still has quite a bit of pain, so they added some more pain meds, so hopefully that will help!  She's just very uncomfortable.  No smiles today.  :(  She just begs us to take her home.

Amelia also lost a lot of blood during surgery and that's not helping anything either.  They started iron supplements through IV last night and added some orally this morning, but her hemoglobin kept dropping down to a 5 (normal is 13-14).  So, she is now getting a blood transfusion and we have already seen her perk up a bit.

Her heart is stable yet, but the cardiologist will continue to follow up on her here to make sure some of her abnormal stats are due to the blood loss.  Her cardiologist is through U of M, so we see the one here.  But, he's friends with Amelia's cardiologist so that's an answer to prayer!

Thank you for your continued prayers!!  We all appreciate them!

A dear friend texted me this verse this morning and our pastor read it before Amelia's surgery yesterday.  It was also read at her baptism 3 days after we thought we were going to lose her....God has been faithful!  I needed to be reminded of that!   "Hear my cry, Oh God, listen to my prayer: from the end of the earth I call to you when my heart is faint. Lead me to the rock that is higher than I, for you have been my refuge, a strong tower against the enemy."  Psalm 61:1-3.

Fast forward to January 9, 2018....

Hello!  It's been a while!  Thankfully, I can say our Amazing Amelia has been thriving in many ways.  Her personality just shines!  She has been walking with special braces on her legs with and without her walker - which is amazing!  She's so determined!  She started swimming a lot this past summer, which she really enjoyed!  She also started a dance class doing "creative movement" and that has been a joy to see.  Elsie went with her to make sure she could be a part of the routines as much as possible - it's very sweet.  She also started preschool this past fall and loves that too!  Her teachers are wonderful and help her in any way they can. She is a very happy little girl and for that we are so grateful! 

"As for you, you meant evil against me,

but God meant it for good..." 

Genesis 50:20

"His pleasure is not in the strength of the horse, nor His delight in the legs of a man; The Lord delights in those who fear Him, who put their hope in his unfailing love."

Psalm 147:10-11

In the last post, Amelia was in the process of having both legs casted in an attempt to straighten her knees.  That did not go well at all.  Because of the position of Amelia's feet and knees, she could not tolerate the casts because sores had formed on her heels.  With Loeys Dietz Syndrome, the skin is thinner, so these sores took a very long time to heal - the effects of them are still visible (over 2 years later).  So, for that reason, another try at casting was out of the question. 

Since then Amelia has been wearing her AFOs (Ankle foot orthosis) and special braces made for her legs.  The braces for her legs are similar to what the casts did, but it was up to us to slowly stretch her knees with a ratchet on the side.  We could now take them off for baths or swimming - huge bonus!!

We call this the "Mia Bobber." 

Amelia's sweet Uncle Mitch made this for her!

As you can tell, she loves it!

Amelia still wears these braces, but only for about 3-4 hours at a time.  Then they become very uncomfortable for her.  However, she also wears them at night too along with braces on her feet (Ponsettis).  But, when she's not weight bearing (because she's laying down), they don't bother her as much.  In the end, conventional treatment to straighten her knees has not been working and her orthopaedic surgeon made the decision to do surgery, which was last resort because of the risks involved.  Surgery was always going to be necessary to move her dislocated knee caps, which formed way off to the outside of her knees, but this surgery will include much more.  The risky part is loosening and tightening those parts in the back of her knee just right (while also avoiding nerves) to assist in getting her knees straight.  The bones below her knees are twisted, so those will have to be realigned.  Then everything above her knee has to be adjusted as well.  Her surgeon doesn't even know everything he will have to do until he gets in there, which could include the shortening of some bones.  Because this surgery is so involved, he will only be operating on one leg at a time.  The first surgery will be this Friday and the second one is scheduled for 2 weeks later.  She'll be casted following both surgeries for about 8 weeks.

So, going into this Friday, we have a few specific prayer requests.  Please know we covet your prayers and do not take them for granted! 

- There's a chance if everything goes very well, her surgeon might be able to do both legs at the same time; not likely, but possible!

- That Amelia's pain will be manageable...

- The incision will be big, so there could be a lot of blood loss which means a blood transfusion might be necessary, but hopefully not...

- That she'll tolerate the casts and that her skin will be able to handle it...

- Amelia has a serious heart condition (aortic root dilation/aneurysm) and in addition to that, there was a concern about her blood pressure dipping really low during anesthesia for an MRI she had in November in preparation for this surgery. Please pray that her blood pressure stays manageable and her heart condition stable...

- That the surgery will be a great success and she'll be able to walk!  Without her leg braces would be a huge bonus!  Amelia has her heart set on that. :)

February, 2017

On December 9, we lost one of Amelia's most valuable supporters, my dad and Amelia's papa.  Our last prayer request would be that you would keep Amelia, and our family, in your prayers as we grieve his loss and at the same time face this surgery for Amelia.  We are so happy for him knowing he is finally at Home with his Heavenly Father, but we miss him so much - especially his love and support!  My dad was also disabled and had braces as a child, major surgeries and pain in his legs (even until the end), so him and Amelia had a very special connection and I already miss his ability to relate and understand, unlike many of us.  But, Amelia knows he is in heaven and confidently says "he can do anything now!" - and that's what's most important to her!  Her papa would be proud of her - an inspiration she is and has always been to us! 

I would also like to take this opportunity to thank many who have been so supportive throughout the last 4 years and especially lately in light of Amelia's surgery.  Our families and friends have been with us through this journey and continue to hold us up!  Many have already surprised us with special gifts or offered support in different ways.  None of it goes unnoticed and it means more to us than you will ever know!  

We are also thankful for our church family who has always supported us in many different ways!  We are so grateful that Amelia means so much to them!  Another family that is important to us is our school family.  They have provided and cared for Amelia in many ways as well.  Last night, some very special friends, that are also teachers at the kid's school, put together a prayer covering for Amelia and our family.  It was beautiful and such an honor to be a part of.  Thankful for a community of believers in Christ at church and school that know the power of prayer! 

Through all this love and support, I can feel God holding us up saying, "See Julie, I got this!  If only you just trust Me!  'I am making all things new!' (Revelation 21:5)"  Pray that we would trust and rest in the assurance of His faithfulness! 

My mom gave me this flip calendar many years ago and I still treasure it.

My Father's words for the 12th day of January are perfect.

Songs are a great source of encouragement to me and these are just a few, of the many I love, that I have been listening to lately - listen to the words and I hope they encourage you too today! 

Be Still My Soul - Kari Jobe

Miracle - Unspoken

Find You Here - Ellie Holcomb