Kieran SLC for cast 6 April 18 and new drysuit

[Guest guest]

Hello,

Kieran will be at the Salt Lake City Shriners April 17-19 for his sixth cast. I

am really hoping for low, low numbers as he is around 50 degrees right now and

has been as high as about 90 degrees.

Also, we got his first drysuit today so he could go swimming. We took photos

and I will post some later. He loved going to the pool. Kieran has not had a

full bath or swum since he was first cast a year ago. Kieran has had full

showers at cast changes and sponge baths/hair washes in the kitchen sink only,

and a few times he has soaked his bottom for a few minutes in an inch of water

and Epsom salt, below the bottom of his cast while I watched him like a hawk and

got on his case if he moved too much. This has kept him more or less clean, but

I really wanted him to be able to swim with his sisters and for us to swim as a

family as swimming has always had a high importance to us as an activity.

So Kieran went swimming today in his new drysuit and loved it. I am glad that

he is back in the water. Kieran is 2 and a half years old, we have spoken with

Kieran's care providers about this before we undertook it and got the go ahead

also. The suit performed perfectly and his cast remained completely dry. He

starts parent and tot swim lessons on Tuesday and we hope to get into the water

several times a week. For my family, which places high value on swimming, this

is one of the best things we have done for ourselves since we started casting

Kieran, which ranks above and beyond anything else we have ever done for him.

Now there is NOTHING Kieran can't do in a cast. He has swum, done gymnastics,

dance, skating, played team ball sports (but not t-ball or tennis or anything

like that, more like tot soccer), rode on his trike, climbed all over the

playground, even places his almost five year old sister won't, does chin ups,

tot push ups runs, hikes (he loves hiking and is very good at it), stretches to

the sky and downward dog, etc, etc, etc. He is very, very active and nothing

seems to stop him, period (just as long as he doesn't ask to play t-ball or

tennis.) Continue to look for ways to challenge him and improve his quality of

life, and look forward to hopefully getting him so straight that he may grow up

to be surgery free -- though, as a disclaimer, this isn't really what is

expected. He is at this point quite inflexible, but until he actually has

surgery, I continue to hope.

Also, , if you read this, I will send you photos of Kieran asap, as soon

as it is quiet with the three small children quiet and asleep.

Sorry I don't update more! My eldest is 4 and youngest is not get one, and I

have three and am going to be working 12 hour days five days a week starting in

a week full time until I retire to pay the bills!!!

Thanks so much for reading this, and I hope I find you and your family well,

optimistic and in a good direction!

Shauna Leamy

mother of Kieran (5th cast from SLC, 2.5 yrs old), Kelsey (4 yrs) and (11

months)