44 Steps, a Shower and a Spoon

Today started out like most days do with the 75 mile journey to the hospital. I usually do OK once I get there but right now I am having such a hard time wanting to leave my bed in the mornings. I think it has a lot to do with........ maybe............. stress and not being home much. I am having to literally drag myself out of bed!

I know that Maddi is working so much harder than I am but she is young and I am feeling as old as the dirt at the bottom of the compost pile not the top. The constant driving makes me weary but I will do it until Maddi can come home!

44 Steps

There are 44 steps from the main floor up the the third floor where Maddi's room is at that hospital. PT and OT are done on the main floor. I have felt the compulsion to take Maddi on the stairs just out of sheer curiosity but I haven't dared to try it. Matt the PT guy did take the dare and Maddi walked up and down ALL 44 steps alternating feet on each step just like any other 13 year old girl would do. That shows incredible stamina and focus for her to maintain that walking rhythm on the stairs. Matt declared a "no elevator" policy for Maddi as part of her everyday tasks.

Flashback to when we were having to put check boxes on the white board to indicate the number of times Maddi just got out of bed! Amazing!

A Shower

Usually our day begins with a shower using a shower chair for Maddi to sit on. Today, however, Maddi wasn't having anything to do with the shower chair! Having Maddi communicate with sign language is such a blessing except for when our ideas don't match (envision a sly, sneaky smile on both our faces). Maddi hasn't been "safety certified" to stand in the shower yet but she refused to use the chair. I am all about rewarding agency and self awareness.

So, being the mom that has always cheered on every new step, I set up the rules of engagement. I told Maddi that she would have to hold onto the bar and stand there until we were completely finished. I put the chair in the shower area as a precaution and a consequence for not following the rules. Well, Maddi followed all my safety rules and she did fabulous in the shower.

She stood the whole time and held onto the bar except when she stepped away from the water when it randomly went from warm to cold. She enjoyed that so much more that using the shower chair! I was excited because I didn't have to pound on the wall to get her out of the shower like we have to at home. I am sure the shower dawdling will return just like everything else but for now I will enjoy her quick ones.

Let me break down the complexity of a shower for you. First you have to stand and keep your balance ( which is HUGE!). Then you add water and soap to make it slippery. Next, you add the whole body sensory part of feeling warm water all over your body with air cooling you too and in our case the random temperature change from warm to cold. Finally, you also have the sheer stamina it takes to stand long enough to get everything clean.

Most brain injury kids at this stage cannot even attempt that amount of sensory input and keep their balance without the slipping risk much less the cold water too. So here again, Maddi has always been an overachiever and this experience is not exception.

The other thing we did today was let Maddi try using the spoon herself while eating chocolate pudding. She actually did a pretty good job of it! She even took the time switch the position to lick all the pudding off the spoon before going for more.

Maddi using sign language has been wonderful! There is just one tiny drawback for us right now, directionality is a problem for Maddi still and some signs are pretty similar. Two signs look fairly similar especially when Maddi is tired.

The sign for the bathroom is formed with the "t" position; the thumb between the first and second fingers in a fist and then you twist or wiggle your wrists a bit. The sign for yes is formed by making a fist with the thumb in the "a" position and you bend your wrist up and down like shaking your head.

Well, with Maddi the "t" position is a little weak but she can do it. We were talking to Maddi asking yes/no questions and she became pretty animated and actually almost punched me in the eye with one of her hands and then proceeded to go for a double black eye. She never touched me but she was obviously trying to say something. When I took a closer look she had her thumb tucked but not in a "t". She was literally yelling at me to ask for a visit to the 'Loo". I had to laugh out loud with that one! She was talking and I was the one not "listening". We took care of business and all was well but her little personality is shining through so much more with the communication part going on.

Just an FYI a teenager can give attitude using absolutely no words using sign language. Just today I have seen an I don't really care no, an emphatic no and a whatever no! I have seen apathetic yes, absolutely yes or an if I have to yes. Pretty amazing. I guess I will have to coin the phrase, "Don't you sign in that tone with me, young lady".

It is official that Primary Children's Rehab team will be coming to evaluate Maddi tomorrow. That will be a happy day once we get rolling over there. Then we will have a tentative HOMECOMING date to look forward to! Today was great and tomorrow will be just as good.