Sunday, June 7, 2015

Determined to walk no matter how long it takes!

So often lately, I sit down to write an update and the words just aren't there.  I type then delete, type and delete, and so on.  And then I happened to go to a garage sale and someone recognized Amelia and told me they have been praying for her!  I can't tell you how that felt!  And since then, I have had a few other incidences similar to that one.  So cool!  But, they also had a lot of questions about how she was doing because they haven't seen any updates...and this was over a month's time!  Because it's long overdue, I decided to do a few separate posts focusing on one area at a time so it's not too overwhelming. 

We (Amelia's therapists and I) just decided last week that we are going to take some time off of therapy at DeVos.  Let me tell you...I was not jumping for joy as I thought I would. The weekly appointments were cumbersome at first, but before I knew it, it was just our routine...every Friday morning for almost 2 hours for 17 months.  Amelia was just 2 weeks old when she saw her therapist for the first time...  

One of our many firsts...therapy at DeVos
Last day of therapy...
On May 5, Amelia had an MRI of her knees at U of M and we recently met with her orthopedic surgeon to go over the results.  He broke the news to us that therapy alone will not help straighten Amelia's knees.  This was a hard one for me to take because of all the work we put into it at therapy, through Mary Free Bed and at home.  So, leaving therapy felt somewhat like something you work so hard for only to get knocked down at the end.  Amelia's doctor was never convinced that therapy alone would do the trick (although her therapist was very hopeful), but he thought it was possible with some casting.  The MRI showed that Amelia has congenital dislocation of the patellas (knee caps).  The knee caps are attached to the tendon of the quadriceps which contract to straighten the knee and another muscle is attached to the base of the knee cap...all of this formed way off to the side of her legs. Therefore, moving them, and all the mechanics that go with it, will require major surgery, especially since this is how it formed from the beginning (congenital).  In addition, her Loeys Dietz Syndrome and knee contractures further complicate things.  "I'll be honest, she's a pretty complex case," is what we heard.  So, with that being said, Amelia's doctor is consulting with different doctors around the country on the best way to approach this, one of them being whether or not to do casting before surgery.  On that note, we asked him if we could wait until after summer to start this process, because with casting we would have to worry about them getting wet, they'll be hot, she won't be able to be mobile, etc., etc.  He was fine with that because he said we really won't lose any ground by waiting just a few months.  Phew...  In the meantime, however, she just won't be walking.  It didn't really bother me too much before to watch her with other kids close to her age when they're walking and she's walking on her knees trying to keep up because I was holding onto hope that walking was in the near future, but since this news, it has been much harder.  I see a long road ahead.  And, I know that a lot of it is perspective and it could be much worse, but this is where I'm at right now.  It is so hard to see the desire and fight in her and know it's not something she will be able to accomplish on her own.  More and more she tries standing with knees bent.  It's my heart breaking for her....I am grieving what she will have to go through to get there. 

So, as I wept in the early morning hours for my daughter, I was drawn to Jeremiah 1:5 and I know God had to literally take me to it.  Jeremiah 1:5 says, "Before I formed you in the womb I knew you, before you were born I set you apart."  I had to be reminded - in fact, it had to stare me in the face - that there is nothing I or anyone could have done differently to create my beautiful Amelia.  She is exactly what God wants her to be and He has promised to follow through with His plans for her (Jeremiah 29:11).  I have to believe this for myself, my family and mostly for her.  God has showed me so many blessings I would have never known if it wasn't for her...He definitely set her apart.  Another beautiful thing about my Lord is that, in my sadness, He reminded me of this in a very vivid way.  On the last day of therapy, Sam had to come with me.  He was supposed to stay at a friend's, but it didn't work out and it was a blessing in disguise.  God played a scene in my mind from that day that I will never forget.  Amelia was in the gait trainer at therapy and Sam was beside her hunched down with his hands on his knees cheering her on in such a tender way with every step.  And let me tell you, she already adores her big brother, so the look on her face looking at him was also priceless.  I never knew I would have to depend on my children this young, but I needed my little boy that day.  I also realized that I would not have those moments without this trial.  There have been many struggles over the last 17 months, but the joys that have made life sweeter than I ever thought possible, have topped them...thank you, God.  

While we wait for news on what, when and where, please pray that Amelia's doctor will have clear direction on what would be the best option for her.  Pray for us as a family, that we continue to find joy in the struggles so that we can be a testament to God's amazing grace.  

"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

Thank you to everyone who has been so faithful in prayer even though I have been absent in my updates!  Over the next few weeks I will be adding an update on Amelia's eyes and heart.  It's looking like she will need surgery on her eyes this winter and we'll see her cardiologist the first week in July to have an echo and get a better idea on what he did and saw on her heart cath that was also done on May 5 at U of M.