Saturday, January 7, 2012

Arthrogryposis

Arthrogryposis is very unique as it effects each person with the condition differently.  As many know, I have two daughters with AMC so this condition touches my heart in so many ways.

Madelyn went to see Dr.Sullivan at the University of Chicago.  He is amazing and we are just so happy to have him look after our girl.  Madelyn did not want to see a doctor for the longest time but as she is now more active, she is experiencing more pain in her lower extremities.  She walks with a noticeable limb and when she runs, her little leg swings out and thumps to the ground (ouch).  When she is tired, she falls...Hard. I am very grateful my daughter can walk and run as I know many people with AMC cannot. So when Madelyn came to us and asked to go to the doctor, I was thrilled!  We decided not to push her into getting evaluated, we really wanted her to feel safe and bonded with us first and now that she's comfortable enough in her new home life...off we went this past Friday to see Dr. S.  It's nice to go to a place where doctors and nurses know you and show a sincere interested in your children.  We visited with his nurse and then met with the resident for awhile, then Dr. S. came in and he could not tell me enough how "impressed" he is with her abilities.  I gave all the praises to Madelyn's foster mama and baba because they WORKED on miss Mady from age 2 until we came 7 years later.  She was massaged, stretched and had acupuncture and the hard work paid off!  NO SURGERY!  Dr. S. wants her to get into some special leg braces which will help her walk, run, ride her bike without as much fatigue.  When Madelyn and I prayed in the car before going in, we asked for a blessing and GOD knocked it out of the park!!! 

Linzhi Rose- my sweet angel that works SO HARD everyday to get her muscle stronger and stronger.  Linzhi will get there, I know it!  She has a wonderful caretaker in Dr. Mass.  He is so interested in her.  The last time we were there, he brought a resident in to show Linzhi off.  He told the resident, "This little girl is going to do big things".  I get tears in my eyes thinking about that moment.  I was reminder by Dr. Mass that Linzhi's road is long but we will get there and I believe it.  We are always brainstorming new ways to get dressed, eat, etc...just normal things that people without AMC or other conditions that limit mobility don't have to think about.   I love her strength, I love her will and I love how the Lord made our girls (and Trev, Rachel and Gracie) so perfectly!!!

Rachel- having two sisters with physical disabilities can mean mama may need some extra help when were on outings together without dad or Trevor.  Rachel is an expert in AMC.  She knows what the girls need sometimes before THEY do.  Most of the time, she is loving and caring but there are moments when she's not interested and that's ok too (this is very rare). However, Madelyn and Linzhi help Rachel is areas that she struggles in as well.  Rachel is terribly afraid of the dark and relies on her sisters to help her with this issue almost daily. When Rachel needs help in Math and I'm working with Linzhi, Madelyn steps in or when Rachel has a neck ache, Linzhi Rose is quick to give her a rub "Linzhi style"

All of my children have special needs, some we can see and some we cannot but they're there.  I'm full of special needs!!!!  See, we all need each other to get through this life.  AMC is such a blessing to this family.  We have met some really awesome people through this journey and I would not change a thing!  I'm sure we'll be blessed with Gracie's CHD as well...I can't wait to find out!

Oh,  by the way, it's day 52 waiting for LOA...It's coming...I can feel it!!!  :):)


Psalm 139:14



"I praise you because I am fearfully and wonderfully made; your works are wonderful,  I know that full well.

2 comments:

Sandy said...

I pray for you guys daily. I also lurk a few times each day to see if the travel to get Gracie has arrived....Loved this post...I wish I could come up and meet Madeline. I think she is just as cute and special as Linzhi....You too Rachel...I loved meeting them at Grandma Sharon and Grandpa Willies.
Love you cuz,
Sandy

Kelly the Overthinker said...

Hi - I am advocating for a little boy who I believe has this condition -- can you come by my blog and take a look? I'd love to hear your thoughts on his treatment and prognosis. I really want to help find his family!
Kelly