Ryan is doing well. He is still on the ventilator while they try to inflate his right lung. As soon as that happens (please pray it will soon), they will start weaning him off the vent. We hope that happens soon since the diaphragm atrophies quickly. We don’t want to have to start over with retraining his little body to breathe.
Ryan is such a fighter. One of the programs CNMC offers for heart and cancer patients is called Beads of Courage. It is a program that uses art therapy to help kids visually see all the invasive procedures that happen to them throughout their illness and helps them see how brave they have been through it all.
Ryan has his own strand of beads (although he doesn’t know it yet) that I keep up with. Because he is a complex case, he has a lot of beads! He gets 5 beads on an easy day, more on hard days. His every day beads are for infusions (certain meds), pokes (blood draws, etc), dressing changes, x-ray, respiratory therapy, and overnight hospital stay.
On hard days he has earned beads for such things as TPN (nutrients through IV), Cath, Heart Surgery, Blood Transfusions, Tube insertions or removal, and Central Line (or similar) insertion or removal.
Here are a few pictures I took of Ryan’s beads. They were taken when I had strung through March 17 – basically one month after birth. It measured 75 inches long. It is now strung through end of last week and it almost twice as long! I counted them while he was getting his cath yesterday and he has 317 beads. His heart surgery bead just happens to be the 100th bead on the string (not including his name beads). Enjoy!
The string of beads from Feb. 19 – Mar. 17
(the measuring tape is 60″ long)
The large bead is a special occasion bead, Ryan
got it for being born at Children’s. The star bead
is for being admitted to the CICU.
The square heart bead is for his heart surgery.
The tiger bead and flowered bead are special selection beads.
They represent the day he met his sisters for the first time.
Ains picked the tiger bead and Nat picked the flowered one.
(c) 2016 Leighann Marquiss
Comments (11)
We will continue to pray for Ryan. We love you all. Lexi prayed for Aunt Leighann, Uncle Henry and the little ones referring to Nat and Ainsley. Thought it was so cute.
Love the beads! I have heard of hospitals doing this, but didn’t know what the beads looked like…I certainly wish our hospital did something like this. What a special gift for Ryan and for you to remember how strong your little boy really is! I continue to keep Ryan and your family in my thoughts and prayers. Best wishes…
we are praying. Wow, I love the bead idea, I wish I knew about it when Eli was in the hospital, I would have been a great visual for him!!! Prayerfully we won’t ever have to do this again, but if we do, I am calling you!
Love from us all
That is a really neat idea. Wish they’d had something like that when Dathan was in the hospital. It would’ve made for a good way to remember instead of all bad! I pray that Ryan will get stronger soon. And for all of you as well.
I love the bead idea. I’m glad Ryan is doing well. We’re praying for him!
wow, i love the beads of courage. they, of course, brought tears to my eyes. May God continue to give you and Henry courage as you walk this path He has chosen for you. We are upholding you in prayer.
oh the tears! That is so awesome! Whoever thought that up deserves a medal! What a way to help children adn their families cope from day to day. I really lost it on this post though Leighann. Just picturing you stringing those beads and what each one means, how significant each step is that you walk through. I am praying for you guy continually… I know I keep telling you that but I so mean it!
thanks for sharing the beads and pictures and explanations! that is so neat!!
Wow! What an awesome program for the patients and you! Its beautiful!
I’m still working on Ryan’s prayer blanket but my wrist has flared up with tendonitis and I am in midst of finals so it has slowed down but I promise he and you all are always in my prayers!
I love his beads!! Praying every day for you guys!
I love this! I am going to do one for Mags. I got a little extra cash for babysitting yesterday and I was wondering what I would use it for. This is perfect! I can’t wait to get started. I’m glad to hear that Ryan is doing well. Way to go buddy!