Yesterday, when they asked us what set of casts we were on, I just stood there. I had completely lost track. When we rallied and remembered that it was Round 7, the nurse gasped. The highest number on the cast count form is 9. It looks like they may need to create a new form.
It was a LONG travel day. We left our house at 2:30 am and returned home at 8:00 pm. Aaron does not like to sleep in the van. When he does take a quick cat nap he always wakes up so proud of himself saying: "I sweep in the van." Yeah right!
BUT - it was worth traveling up to Shriner's for one more very precious reason: We got to meet Tracey Schalk in person.
If you don't know her, Tracey is a 22-year-old who shares Aaron's AMC condition. She's been through it all, and continues to go through it all, and she shares her knowledge and experience with everyone.
She knows more about AMC than most doctors. When she's at Shriners Hospital, she's more like a member of the staff than a patient. She seems to know every single AMC patient there, and she has the run of the treatment rooms as her many friends undergo various assessments and procedures.
On top of all of this, she gave Aaron a talking Thomas train that held his attention for much of the ride home! We can't say enough about how much Tracey has helped our little fellow. He now has special girl friends in both New York and Ohio. It's so good to know he has people who love him. He's going to need them.
Hi there,
ReplyDeleteI would really like to donate a beautiful necklace w/ matching earrings as a "give away" for chip-ins for Jonah's fundraiser! Please email me! Dara. Verumpax@gmail.com
Sorry to hear the trips are taking their toll. Do they have the equivalent of a Ronald McDonald house in Philly that you could maybe stay at to make the trips a little less stressful? It might mean taking 2 days per trip instead of one, but it might be worth it if it is easier on you all.(?) Just a thought. By the way, I can see progress on Aaron's feet just from the pictures you have posted. Hang in there!!
ReplyDeleteAaron the ladies man... who knew? :)
ReplyDeleteKeep on keeping on guys. Aaron is awesome, and so are all of you...
How amazing...that young lady sure is special:)
ReplyDeleteI have never met Tracy but she always sends encouraging words for Bryson. Hoping you are near done with casting. I know how exhausting it can be. Bryson has relapsed and is back in them. I am learning that arthrogryposis is a fluid condition, always changing. You take five steps forward and one back. IS Van Bosse going to have him in a bar at night time once his casts are off?
ReplyDeleteThis once "forgotten boy" has so many Angels around him, both in Heaven and on Earth.
ReplyDeleteMany Prayers and Positive Thoughts!
Blessings
Melissa
journeytoonemore.blogspot.com
I love how God always puts people in our lives when we need them the most. Your family has been very blessed and I thank you for showing us all how much God really does love us. Aaron's smile melts my heart every time I see it. No wonder he has so many women who love him :)
ReplyDeleteI got a text from a very excited Tracey today!!! We both agree we adore the Nalle family and AARON!
ReplyDeleteI'm glad you have a blog and write about Aaron's treatment and condition. It's informative. One of the children we're considering for our next adoption is a 9 year old child on Reeces Rainbow who also has Aaron's condition.
ReplyDeleteoh I know the feeling of forgetting cast counts :).. that's so great you guys got to meet tracey :)... hoping that they can get that stubborn left foot down more :)
ReplyDeleteGod is so good!!! How wonderful that you all were able to spend time with Tracy. Still praying!
ReplyDeleteYeah, God!! Yeah for Tracey!! Yeah for Molly!! How awesome the way He is surrounding Aaron with those who truly are His provision in the moments of your days... : )
ReplyDeleteI just read about a product which could help Aaron during his time in casts. It is called a cast cooler and attaches to a vacuum cleaner to draw out moisture and dust from the cast liner to reduce the itch, sweat and smell.
ReplyDeletehttp://www.castcooler.com/alltestimonials.html