Friday, February 25, 2011

Skyler got his beads of courage today.  Beads of Courage is an organization that sends kids beads for every procedure or hard thing that they have to do while they have been sick.  They get a different color and shape of bead for each different thing they have had to do.  So its kind of like a reward for going through something hard and then they can show off everything they have done by showing people their beads.  Most children's hospitals take part in this but Primary Children's doesn't, so I was able to get in contact with them through my brother in law.  I gave them a count of all the things he has had to do and they sent me all the beads today.  Skyler thought they were pretty cool and kept asking me what that certain color meant.  It was actually good for us because it gave us a chance to talk about all the things he has done.  He doesn't remember alot of them because he was sedated for so long but he seemed really curious about everything and wanted to know all the different things they did to him while he was sleeping.  I have always been one to sit down and talk with him about things like this.  I feel like when we talk things through and he knows what is going on and what to expect and why then he does better with it.  When he has to get a certain procedure done we always talk about it first.  I explain to him what they are going to do and why (in a way a four year old with understand of course)

 Here is a list of things that Skyler has had to do so far:
6      Bone marrow aspirates
7      Lumbar Punctures
3      Biopsies
56    Chemo treatments
3      Immunizations
12    Clinic visits
136  Blood transfusions
213  Dressing Changes
2      ER visits
1      Hair loss
172  Antibiotic Infusions
145  Days spent in the hospital
5      Times in Isolation
139  Days with a fever
64    Days Neutropenic (No Immune System)
11    Line placements
34    Times taking all meds by mouth
34    Days of relearning how to walk again with a walker
123  Pokes
78    Days on dialysis
36    Days of TPN
11    Surgeries
9      CT scans
2      MRI's
4      EKG
9      ECHO
132  X-Rays
6      NG and NJ placements
6      Foleys
3      Transfers to the PICU
142  PT, OT, and RT visits






He was able to make five necklaces.  He still has more beads but we ran out of string.  Also the bigger beads you see on there represent 100 of that certain thing.  As you can see he has had to do quite a bit of not so fun things in his short little life.

Here is a link to Skyler talking about his beads:

                   http://www.youtube.com/watch?v=1XR8Y2wo150

                  (Correction: So I guess they do do beads of courage at Primarys...silly me)




5 comments:

Alika and Amber said...

Wow the beads put into perspective for everyone! I still can't get over the 136 blood transfusions. Kinda freaks me out how much people really need to donate.

Katie said...

Oh my Chrystal. I am sitting here crying and crying. Skyler is such an amazing little boy and you are an amazing mom. You both are so lucky to have each other. We do Beads of Courage at our hospital and my son Jacob (4 also and has ALL) really likes getting his beads. We are only on strand #3 though and I thought that was a lot. I've been reading your blog for the past several months and you give me so much courage and hope. If you and Skyler can pull through all of this than we can make it too. Thank you, thank you for sharing. You guys are on my mind often and I love reading all the recent updates. I am praying for you.

Katie
mama to Jacob (4) pre-B ALL dx 7.28.2010

Diane said...

What a wonderful program to reward his courage. Earning Scout beads will be a piece of cake for him!

lindsay Roscoe said...

That is more beads then any one child should have. He certainly is a couregous boy!!

Brice.TawniWilliams said...

Unreal how much he has already been through - what what an amazing kid! That is a great idea - what a wonderful organization