A Year Ago

A year ago I wrote my last post on my old blog.  It wasn't an official last post, but a post that is worth directing you to now.

Liam's language continues to improve.  His speech therapist is pleased with his progress.  He's been better able to communicate with us his needs and wants even if his tone and cadence is off.  Also, the words he chooses to use are different.  He might say, "I need to do that," while pointing to the TV because he can't think of the phrase "watch TV" at that time. 

The other night he wanted ice cream.  He came up to me, "I want... let me show you," (to which I respond, "no, tell me.") and he runs into the kitchen and opens the freezer.  He comes back.  "I want..." (tell me where it is) "it's in the freezer..." (tell me what you do with it) "you eat it with a spoon...." (oh, you want ice _______ ) "ICE COLD MILK!  I'm just too sleepy to tell you the words."  He couldn't think of ice cream that night.  Sometimes he can and sometimes he can't.

As we're gathering information for a catastrophic insurance claim we've seen the phrase "mild aphasia" used to describe his current speech/language diagnosis. 

What's difficult for me to remember is that aphasia is not a language delay.  He knows the words he just struggles to find a pathway to say the words.  So, exposure to language that he already knows doesn't help him.  Telling him the word he wants as he's struggling doesn't help him.  What he needs is time and encouragement, strategies for describing what he wants, and clues.

When we know what he wants to say we've been encouraged by the speech therapist to use the following hierarchy of clues.  The first type is the most difficult for him and the last is the easiest.

1.  Describe the object to him.  "It's cold.  It's in the freezer.  You eat it with a spoon."
2.  Have him fill in the blank.  "You want to eat ice _______."
3.  Give a phonemic clue - the first sound of the word he's struggling with.  "You want to eat ice KR-"

For awhile now he's been excellent at figuring out the word with the phonemic clue.  He's getting better at filling in the blank.  His therapist upped his latest goal from filling in the blank of a highly predictable sentence to filling in the blank of a medium predicable sentence.  (For example, "On Christmas we open _______." is considered a highly predictable sentence.  I can't think of a medium one - she didn't give me one.) 

Besides giving him clues when we know what it is he's trying to say, we're encouraged to have him describe what he wants (as was the case for the ice cream).  When he starts off by saying something and gets stuck we can reply with the following:

• You want to......
• What do you do with it?
• Where is it?
• Describe it.  (or usually this doesn't work... so we ask questions like "Is it big? "What color is it?" etc.)

Everything about this is getting noticeably better.  I'm looking forward to when he can talk and hold conversations like he used to.  I'm holding on to the phrase his therapist said weeks ago, "We'll get there.  It will take time, but we'll get there."  According to everything I've read about aphasia he will always live with it, but the struggle will become easier and most people won't even notice.  As for now he's got his big brother explaining to the kids on the playground why he keeps saying "GAGA!" 

Aphasia is one of those disabilities that aren't visible from the outside, so when he starts to talk with his baby voice and strange phrases people are usually shocked.  I prefer the kids who just ask why over the parents who seem surprised when they ask him how old he is and he replies "five".  If only I could get him to say, "Five, but I had a stroke and now have aphasia so it takes me awhile to think of my words and my therapist says I use a different voice because it makes it easier for me."

I Don't Want to Know

We're supposed to ask the doctors what the long term effect of this stroke will be. Or what the effects will be for the next six months.

I just don't want to know. So I don't want to ask.

Sixty

Our insurance company covers sixty therapy visits per calendar year.  The team of therapists and the claim department of the center have been trying to figure out ways to best use these "visits" by offering co-treatments, but apparently, if Liam sees an OT and a speech therapist, even if at the same time, it counts as two visits.

So, after being evaluated, the speech therapist said she'd like to see Liam twice a week, but really that number was so that she could preserve the amount of visits we have covered because she anticipates seeing him for awhile.  After evaluations, the OT and PT each suggested two visits each week and figured they'd be finished in four to six weeks.

After doing some research on aphasia, I decided I wanted more speech and less OT and PT.  Everything I've read said intensive speech therapy soon after the stroke is the best road to helping him communicate better.  I've seen great gains in his motor skills and am not concerned about those areas.  Especially the physical therapy, I mean, heck, he's a five-year-old boy.

After the OT (occupational therapist) saw him today she was raving about how much better he was after just a few days.  I approached her on the subject of going down to just one visit a week and she was totally on board.

And again after the PT saw him and was raving about how much stronger his right side was getting she agreed to the idea.

The speech therapist declined my offer for her to just come live with us and agreed that he could benefit from more visits.

So yay! for me for standing up to what I feel would be the best treatment for my kid.  And boo! for insurance companies for putting therapists in positions to be "conservative" when it comes to treatment plans. 

Daily Recap Take Three

The good and the not so good of today seem to go hand in hand - so I'll just list them all together....

• I got a call early this morning from the neurology department at Lurie's Children hospital letting me know they had an appointment open up with Dr. Wainwright, who is the one I really wanted to see.  The appointment is for July 18th - which means we'd have to cut our vacation to the Dell's short and be sure to get the medical records from Loyola before that.  We decided to try to get the records and take the appoinment - Dr. Wainwright appears to be very qualified (he's got the most letters after his name) and does specialize in pediatric stroke.
• So, this means we'll be cutting our annual Dell's vacation with Mike's family short.  Right now, we're thinking I'll leave Tuesday night and Mike will stay with Quinn for the remainder of the vacation ('til Thursday).  I feel bad for not giving Liam the entire vacation - I mean really guilty - but I could not pass up the chance to get an appointment that quickly and with this doctor.  I'll try my best to make the trip to the doctor's exciting (we'll be taking the train) and then hopefully the next day I can think of something fun he'd like to do.
• It also meant I had to contact Loyola about getting the medical records quicker than promised.  That was easy, the secretary from the neurology department at Lurie's gave me some advice, I followed it, and the supervisor from the records department at Loyola was very helpful as was whoever I spoke to from their radiology department.  Yay! for nice people.  I will be picking them up tomorrow and then hand delivering them on the day of our appointment.
• Liam's speech therapist made me cry when she said, "it's just so frustrating because I can tell he wants to have conversations and he just can't yet."  I'm pretty sure I also heard her say, "We'll get there."  And I did hear her say, "He has a good solid base and can ask for basic needs."  To this my only response is that aphasia sucks. 
• Liam seemed more tired today and there were many times I thought "aphasia sucks". 
• The PT and OT that work with Liam agreed with me that we could go down to just one session a week and the speech therapist agreed to do four sessions each week instead of two.  (This situation has almost everything to do with insurance, but the PT and OT both were raving about how well Liam was doing.)
• Quinn is figuring out ways to play with Liam again - and listening to their rough-housing and screaming has been awesome.
• Liam usually gets a brief break between therapy sessions and it gives us time to hang out together and have a snack.