Lauren's first week at Kennedy Krieger

It was a heartbreaking moment in the car Sunday (Nov 7) when Delanie was trying to get Lauren to give her a "righty high five" and bribe her with the promise of a sticker, as she likes to do. Lauren gave her a lefty high five instead and announced "I don't like righty" with the high-pitched most innocent voice of a two year old. Righty had suddenly fallen into the same category as lima beans, pony tails, brushing her teeth, and Baltimore City. It made me sad to think about how Lauren feels about her body not working as she'd like, and how she may feel about herself or her abilities in the future. Nevertheless, with hope, we started the Kennedy Krieger program this week.

It's Thursday now (Nov 12) and Lauren started her Constraint Induced Therapy Program at Kennedy Krieger on Monday. John took her in for initial evaluation and assessments Monday. She was fitted for her cast while watching tv and had no problem with that. It's waterproof thin fiberglass with a cushiony lining, and flexible with a seam entirely up one side so it can be removed and replaced easily. She didn't wear the cast home that night.

On Tuesday, I brought her in and the cast was to be placed on that day. She was taken away by Sara, her OT. I heard crying and urgent "I want my mommy" soon after that, which was crushing me. After a few minutes, Sara obliged her and came to get me. We went back to her therapy room together where Sara explained that Lauren and other kids are sometimes afraid of the cast at first, which she was unable to get on due to Lauren's struggling and tears. Lauren sat on my lap and I tried to bribe her with toys and a lolly pop while Sara went to get Erin, Lauren's PT to help put the cast on. Lauren was calmer when they came back. She cried as all three of us tried to open the cast and place her arm and thumb in the right spots, and demanded "I want my daddy, I want my daddy" now that she knew mommy was in cahoots with the therapists. The cast was successfully placed within seconds and Lauren chose purple tape to close it up.

I don't know what was going through Lauren's mind when we tried to put the cast on. Perhaps she thought her arm would get eaten up, or disappear and fail to exist after it was placed on. She didn't seem to mind the cast much almost immediately after it was placed and taped. She sat on my lap while Sara blew bubbles to her and we took turns blowing bubbles. Lauren tried to pop the bubbles initially with her casted arm, then with her right arm. She was able to hold the bubble blower with her right hand with help and seemed to enjoy dipping it in and out of the bubble bottle and letting it drip all over the floor and her mom.

Then she moved on to the toy closet with Sara and chose a hollow-plastic giraffe toy with blocks to play with. She carried it with her right hand with help over to the mat and sat down with Sara. They placed blocks into the giraffe head/neck with hand over hand posture to help her pick up and release the blocks with her right hand. She was very (and surprisingly) cooperative for 10 minutes or more before they chose a new toy. They eventually went for a walk with her tiny push shopping cart and disappeared down the hall. I went to sit in the lobby and watched as periodically she'd come pushing the shopping cart past the waiting room relatively happily.

She tolerated the rest of the first day very well. Erin and Sara were both really good about sitting down with me to discuss care for the cast and what Lauren should be doing at home - turning pages of books with right hand, hanging left casted hand out to dry after bath time. I like how Erin described what not to do. "Don't feed Lauren like a baby bird." No sticking food in her open mouth. She had to try to do things for herself first, but avoid frustration too. I found out that we should probably avoid calling her right hand "Righty" as we had been because we want her to feel like it's just another part of her body, not an outside labeled thing. They recommended setting her up for success so you don't have to tell her which hand to use, like by angling her so her right hand is by the toys or book, and using "tactile stimulus" like pushing her right elbow a little to get the movement started in the right direction.

The first challenge I found with taking her home that day was getting her coat/kitty cat sweatshirt on. I tried to pull it over the cast but found it very difficult since her new fiberglass thumb sticks up from the cast like a perpetual "thumbs up" sign. The second challenge was getting her in the car seat and her straps around her arms. I had to literally angle her whole body in reference to the cast to get her pushed under her arm straps.

She didn't seem to notice any of the challenging parts. She'd periodically say"what's this?" and hold up the casted arm in her cuter-than-Elmo voice. I'd tell her that it was her cast and it was hugging her arm, as her therapist taught me to. Then she'd say "Take it off" without a hint of anger or frustration. Since she doesn't have much concept of time, I'd just tell her "We'll take it off in a few days. It's going to help you get stronger for now".

Back at home, we were sitting and reading a board book. She was dutifully turning pages with her right hand (the back of it) and went to turn a page with her left hand in the cast. She thumped her cast against the hard page several times before saying "I can't use this arm" and looking up at me with curiosity. I told her, "That's the whole idea. Now you use the other arm, and later you'll use that arm again."

I think Lauren is eating up all of the one on one attention she's getting. She went right to sleep the first night with her cast, exhausted I think, actually. She woke up only one time, around 4am and told me that she couldn't find Hop-hop. When she found hop-hop, she couldn't get him tucked into the correct location in her crib. As soon as I helped her with that, she went right back to sleep. She woke up happy and does not seem to have much frustration at all so far, just questions.