Prosthetics- step 4

Will in the grocery cart trying out his "new legs" in public for the first time (just moments after the "flying legs" experience - see below blog)
Will & his "foot" doctor- Dr. Tony Herring (chief of staff at TSRHC)
Will & his "team" this morning. Scottish Rite uses a team approach so everyone is on the same page- therapists, doctors, surgeons, etc. This is most of his team.
Will & the therapy dogs this morning
Will's prosthesis- 4 layers- first, the sock, then the liner (to the left of the sock), then the prosthesis leg/foot with shoe (in the middle), & on top to suction it on to Will's leg- the neoprene sleeve. Very HOT! People with limb differences also have trouble regulating their body temp as they have less surface area to sweat from. So imagine how hot he already gets & then we are adding 4 layers to both legs! This is another reason why it is not recommended to do hands & feet... & why he won't wear the legs all the time.

Will - within moments of putting on his "new legs" for the first time
In his hospital room (we used it for naps)
Some of Will's bricks. A precious family at our church donated some bricks in honor of Will along one of the walkways at Scottish Rite. I couldn't picture them all but they say: "Reagan Butts, Will's proud dad, "William D. Butts, August 30, 2007," "Katie Butts, Will's proud mom," "Psalm 139, fearfully and wonderfully made," and " There's a Will, so there's a way."

How very generous & thoughtful! I know Will will enjoy searching for his bricks at future visits.
An exhausted boy in his walker. Will works very, very hard every day during his intensive therapies. We all leave worn out! He typically falls asleep within minutes of leaving. Bless his heart, for the first two days, his morning session was at 10 am (when he typically goes down for a nap), & his afternoon session was at 3 (he typicall takes a nap from 2-4!). We've now adjusted to 9 am & 3:30 so that is a little easier on him but he still gets worn out!

I really admire my son. I don't know if that is typical for moms or not. He has some incredible challenges & he generally has such a good attitude & a happy spirit. These therapy sessions have really pushed him - during his regular nap time & forcing him to work so hard. Imagine relearning basic things you are really good at (like walking or sitting for instance) & having to relearn it when you are really sleepy while wearing heavy weights & with extended legs or standing on stilts, that are heated. He is literally relearning new methods for rolling, crawling, sitting, pulling up, walking, etc. And he is doing it with these long, heavy, clunky things on his leg... that offer no feeling on the ends of them. It's hard on us as we hate to see his legs & feet covered up. We accept & love his little body & hate to cover him up. I make sure to kiss his legs & feet every time we take the prosthetics off.

No parent likes to watch their child suffer. We all know there are times our kids will suffer & we may be the cause of it & it is okay... like when they are crying after a spanking or when we are requiring them to eat vegetables or when we've taken away that dangerous electrical cord they seem to always want to eat. I can accept those times. It's times like this week that I struggle with. These days aren't in "What to Expect, the First Year." I can't explain to Will why we are choosing to get prosthetics for him. So he looks at me & cries & can't understand why he can't quickly crawl into my arms & why I'm not just picking him up & taking these things off of him. And my heart breaks. I question constantly why we are doing prosthetics. My brain knows that we are doing them so that Will has options. We want him to be able to do anything he wants & realize that with prosthetics he may be able to participate in a wider variety of activities. I don't want to tell my 5 yr old that he can't play soccer because he can't wear the shoes or shin guards or because he can't run the entire distance of the field. So, I guess I'm learning what most moms know already. I have to think about the future as I watch him suffer today. I have to tell him ( & myself) that I am doing this because I love him & I want the best for him. I just hate watching my normally happy & fast crawling 11 month old struggle to go a foot & fuss. They tell me that soon he'll love his "new legs" & not want to take them off. I look forward to that day. This week has made me realize that I simply don't know if I can be strong enough to do this for Will. I don't know if I can be strong enough to do 3+ sessions of therapy at home now a week, to work with Will at home when I don't have a therapist at my beck & call, to work with Will with his prosthetics on when I'd rather just be playing with my fun baby.

By the way, we are trying to figure out what to call Will's prosthetics. I don't like feet or legs because he has feet & legs. Everyone at Scottish Rite tells me kids generally call them their "new feet/new legs" or they make up a name for them. If you have a creative idea, please feel free to share!