Feeling Good

Just over a week ago we had a huge celebration in honor of not only Liam's birthday, but also as a thank you to all those people who have helped us out this past year post-stroke.  In lieu of gifts for himself, Liam agreed to have all gifts donated to the play center at Loyola's Children Hospital.  He truly had a good experience there just about a year ago and was more than willing to pay it forward.

The friends and family we invited to our celebration were more than generous.  Books, DVDs, video games, toys, games, puzzles, cars, and so so so much more.  Lots of good quality toys that we know will surely help put a smile on the faces of some patients.

Liam had a neurologist appointment today so we arranged for delivery.  Liam was waiting anxiously for Meghan, the child life specialist, to come down and meet us with some wagons to carry the goods up.

It actually took two wagons to carry it all.

 

After the big delivery we ate lunch in the cafeteria, which we sort of missed after having so many meals there during Liam's stay.  They have a great salad bar!

Then, finally, it was on to the neurologist appointment.  Great news on that front... we're done with that doctor unless we start to notice any unusual behavior (seizures, dizziness, etc....)! 

He did have some concerns about the speech therapy Liam has been receiving and asked me if there was something else they could do to help the aphasia.  My response was that I didn't know of anything!  He vaguely remembers another patient using something so he's going to look into that for me.  We did discuss how the strategies he's been taught in therapy have been very helpful, but still the doctor feels that there's something more they could do.  We'll see how that pans out.  (I'm to call him in about a week.)

And yet

Yes, we are lucky, and yet, it's still hard.

It's frustrating to start the day with your child struggling to find the words, "Can I watch TV?"  He starts with, "Can I.... uh... Will you open this?.... Uh... This is too hard for me."  You know what he wants to say, but you've been adviced by the speech therapist to let him work through it.  To give him time.  To encourage him to think.  Some of Liam's favorite phrases...

"I need to think think think."

"Let me show you."

"You'll see when I get there."

It's frustrating to watch him struggle.

It saddens me to remember how talkative he was prior to his stroke.  The day the stroke happened he was swimming and playing catch with his uncle - and taking breaks every once in awhile to go out and have a "talk".  "Time out!" he'd declare and then swim out and talk with his uncle, usually offering some encouraging words, much like what we imagine a catcher in baseball does with the pitcher.  At some point in the conversation, after learning that this uncle thought the Chicago Bears would win the Super Bowl this year he said, "Yeah, you can keep on dreaming that dream.  It's not going to happen."  He was always the talkative child - holding the most interesting and/or funny conversations with anybody that would listen.

It's disheartening to think about his confidence.  Even his speech therapist mentioned how he was becoming a selective mute - all because he's smart enough to know he can't always get the words right.  This is not how I envisioned him starting kindergarten.  He always had a confident personality.

It's trying to be a part of a conversation where parents are complaining about how much their chid talks.  "After our first child we were not anxious for the second to start talking... because we knew he would never stop once he started."

It's time-consuming to match up insurance statements with hospital bills, to fill out forms for assistance with therapy payments, to make multiple doctors and test appointments, and to figure out the logistics of getting to these appointments and keeping any prior commitments to your older son.

It's tiring when you're overcome with all these concerns after the kids are tucked into bed and the house is quiet. 

Things are getting better.  He is improving.  We spent yesterday evening at a 40th birthday party where Liam was off and playing with his old neighbor almost the entire time. 

It's just hard sometimes and I don't want to paint an inaccurate picture.

We are lucky.

And yet, it is hard.

Play - So Important

Liam's most favorite person from the hospital came into his room bringing a big smile, some toys, and a great attitude.  She introduced herself as Meg and asked if he would play with her for a bit.  She explained that nothing she was going to do would hurt him at all - she just wanted to play with him.  Her interaction with Liam really made his day (and my day too).  She was able to get more speech out of him than anyone and had him using his right hand.  They played with blocks, playdoh, puzzles, and cars.

Her official position is referred to as a Child Life Specialist. 

As their playtime ended she invited Liam to come on down to the playroom as soon as he was ready to walk.  (We visited later that same day with his physical therapist.)  She also gave him a set of cars, playdoh and a puzzle to take home with him. 

As an early childhood educator I know the importance of play.  I didn't realize how big of a role play would have in Liam's road to recovery that soon after his stroke.  I am still thankful for the time Meg spent with Liam making him feel comfortable and at ease in a very stressful situation. 

I would venture to say that every children's hospital has a playroom.  If you're ever looking for somewhere to donate any extra new toys (after Christmas or a birthday party perhaps) look into your local children's hospital.  I know Loyola is always looking for new toys to help brighten the days of their youngest patients. 

My friend sent me a great NPR article about child life specialists and how important they are to the functioning of a children's hospital.