Sunday, March 3, 2013

Mr. Cap Needs Your Prayers

The one... the only....

Mr. Cap.

Umm... Not quite...
How about....

"Dress up in your favorite book character" day was on Friday and Aaron was so excited to be "Mr. Cap."
His little tongue could just not say Sir Topham Hat all in one grouping!
Who cares!!
He was the cutest Mr. Sir Topham Hat Cap alive!
This Mama is grieving this morning.
So is Aaron's Papa.
We are grieving.
Our little guy has been blossoming in the last few months. 
In every single area.
He is gaining physically and academically and socially.
He's becoming more independent in his daily care.
He has been so very very proud of himself.
And we have been amazed and beyond proud of every single one of his accomplishments.
On Tuesday Aaron is having surgery.
Not just one surgery but several.
In one single day he is going to lose for a very long time all the gains he has made and we are grieving beyond words.
Oh please pray for our little guy.
In a nutshell....
Surgery One
The bone in his upper left arm is going to be cut in order for the arm to be rotated into a more natural position.  In this way Aaron will be able to have his hands work together.  It should increase the function in both his hands as they will be able to work as a unit. 
Surgery Two
Aaron's knees do not fully extend.  Because of this he stands in a slightly crouched position which is exhausting.  He tires very quickly and can only stand for short periods of time.  In the long run the strain on his back is going to wear on him.  So.... they are going to operate on both of Aaron's knees.  The EASY surgery involves knicking the tendons in his knees and seeing if that gains the degrees needed in order to get his legs fully extended.  If that happens than the surgery is over. The HARD surgery involves putting plates in his growth plates.  I'm not even going to begin to explain this surgery.   I'm just praying my  guts out that Aaron's knees cooperate and we don't have to go this route.
Surgery Three
Aaron's hips are also extremely tight so they are going to knick the tendons in his hips so he can fully extend at the hip.
Please pray for our Mr. Cap.
He's so nervous about the coming surgeries.  He knows he's going to come out with casts on his arm and legs.  He knows and WANTS the doctor to turn his arm.  He doesn't fully understand the knee issue but he trusts us.  We haven't really told him about the hips because it is just too much information at this point. 
For those who wonder why we are doing three things all at once...
Aaron has been on the surgery waiting list for almost a year for his knees/hips.  We were anticipating that he would be getting that surgery in May or June based on how long others were waiting. 
We had not been considering having his arm rotated but at Christmas time Aaron received several Lego sets as gifts.  It was hard for us to watch him struggle to build those sets with one hand that has very little function in it.  He had NO trouble following the directions and could have built sets much harder than the ones he was given.  But he couldn't put the pieces together.  (Aaron has NO pincer and his fingers do not bend.)  As we watched him we decided to go to Philly to see what the doctor could do to get his hands working together.   Rotating the arm to get Aaron's hands facing each other so they could work together was the BEST option and the doctor agreed to do it.  So Aaron was put on the surgery schedule.  The wait list for that surgery was not as long.  They had an opening in March with the option of offering the surgery room to BOTH doctors.  We chose to get everything done at once.  Otherwise we would have faced two, possibly three surgeries over the next six months. 
So we are biting a very very hard bullet.  Our littlest is going to be a hurting puppy for the next weeks/months and we would definitely appreciate prayers for him. 
We will be leaving tomorrow for Philly.  We plan on updating on here and on FB as we go through the week. 
Please keep us in your prayers.
We love this little guy very very much.


  1. You know I'm praying for Aaron!!! And for each of you, as you love and serve him, in the unfailing strength only God can provide. Much love- Kelly

  2. So many prayers for little Mr. Cap!! We LOVE YOU Aaron!

  3. praying for precious mr cap, his surgeons and all caregivers (his loving family, too). trusting God to provide His awesome comfort, grace and hope.

  4. I will be praying for him and all of the family. I have been an Aaron fan and blog lurker from the begining. I just have to say that the third picture from the top is my favorite of all time. I am not sure if I can explain it, but it looks just like any little boy would. He is not just cheesing for the camera. It is like in that moment all of the past is gone and not remembered. He is just a happy and proud boy like all boys should be dressed as Mr. Cap. That probably made no sense and was not trying to be mean or anything. I think in all the pictures you post he looks happy and loved. There is just something about that picture.

  5. It is the fourth picture from the top. The close up one.

  6. Prayers coming for sweet Aaron and for your family as you go through this together. When our children hurt we hurt but as a family your love will help him get through it easier.
    I've been following along ever since you commited to Aaron and he has come such a long way with your love!

  7. Praying for Aaron and for you all. May God be your strength and may He give Aaron peace for the upcoming days.



  8. He looks so dapper! I'm sure that doing all the surgeries together is the way to go. I have often thought about your descriptions of his stance, and it must be exhausting for him. I've even tried to stand that way myself, and can hardly do it for a few seconds.

    Our son often asks about "the boy on the blog," so I'll tell him about Aaron's surgery so we can pray for him.

  9. Comforting words from a friend's fb post:

    "God is with us, in good times and bad times; easy times and hard times; gentle times and turbulent times. When we face difficulties, God will sometimes remove them, sometimes He will show us the way to avoid them, and other times He will show us the way through them. Having God's presence is more important than the circumstances we face or the people that are around us. When God tells you He will walk through something with you it means you have all you need - peace is there, strength is there, grace is there, love is there, because He is there." - Roy Lessin


  10. Sending prayers and hugs to you guys! We love watching Aarons progress. Our "Rita" looks so much like sweet Aaron. I suspect that we will be having similiar surgeries some day. Aaron is such a tough kid, he will amaze everyone

  11. Praying for him! Please keep us updated as you can. We know that you will be busy loving on him! Praying!

  12. Praying from the 5th floor of Shriners right now! We are hoping to head back to the RMH tomorrow late afternoon early evening, but we will be back for most of Tuesday and Wednesday for Therapy. We will catch up!

  13. Praying for Aaron and the quickest recovery possible!

    Sue H.

  14. We love you Aaron. And Rob and Julia!! Thinking of you. Much love!

  15. I'm praying for Aaron and your family, specifically that he will be as pain free as posiible and that his surgeries will give him a freedom of movement beyond your hopes. My kids all love legos and I wonder if you have checked out lego's digital design programs. Their website has a kind of virtual lego building game. My kids are a little older than Aaron but it might be worth trying. Then he could build to his hearts content, with just one finger.

  16. Praying for supernatural grace for all of you! Praying for surgeries to be easier than anticipated and uncomplicated recovery. Hugs to you!

  17. You can count on prayers for Aaron and all of the Nalles from the Lococo family. Aaron looks so handsome in his Mr. Cap suit.

  18. Prayers being said for your adorable little guy!

  19. Praying hard for you all. We chose to do a tendon release at the knee and a rodding surgery on an arm at the same for Joshu asimply to get all the recovery over at once... It was brutal initially... But one trip to the OR versus two was worth it.

  20. Praying for the surgeries and all of you.

  21. Julia,

    We are praying for Aaron. He is such a mighty young man, and God will strengthen him in myriads of unseen ways through this surgery...that's how we are praying. Hang in there. Be couragious, and we'll hold you up in prayer.

  22. Prayers being sent from Australia (Heidi)

  23. Praying for y'all as you continue on this journey to equip Aaron to accomplish every single thing God has called him to do!

  24. Praying. What a precious little guy.

  25. Oh wow. What a tough thing to go through for all of you. But I'm trusting that the God who has seen all of you this far will be with you each step of the way. I wish I could sit with you while you wait during the surgery. We had to sit alone in Baltimore at JHH last March while Katya was in surgery for 12 hours plus recovery before we were allowed in with her, so my heart always goes out to parents away from home, sitting and waiting. Hugs to you all! And ask for the Child Life Specialist to get involved with Aaron as fast as possible post-op to provide a distraction and bright spot to his day!

  26. I love seeing this amazing little boy grow and change and become who he was always meant to be with your family. I cannot imagine how hard it must be for you all to go through this. A more perfect fit of a family I cannot imagine. It is an honor to pray for sweet Mr Cap.

  27. Praying for Mr. Cap and his parents too!

    There was one line in that post that brought tears to my eyes, one line so beautiful it literally took my breath away: "He doesn't fully understand the knee issue... but he trusts us". An absolute miracle. Something to hold on to in these next days and weeks... God is surely with you.

  28. Generally just a lurker and you don't know me from a hole in the wall. But please know that Aaron and your whole family are in my thoughts today!
    Sharon in Orlando FL


Loving words from kind people make our hearts glad!