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.

Daily Recap

The not so good:

• Watching Liam play by himself at the pool was hard.  He usually makes friends quickly and easily with whoever is around.  I could see him watching other kids, but he didn't have the confidence to go and play with anyone.
• We couldn't get into the neurologist from Lurie's until Sept 4th. 
• I'm still worried about missing therapies next week, but hopefully when we see them tomorrow they'll have lots of things for me to do with him.
• He continues to use made up words or the wrong words.  At the pool he told me he wanted pizza.  I asked if he was hungry and wanted a snack and he said, "Yes, I want a snack." 

The good:

• Our knock-knock joke from earlier.
• He was looking at a magnet from the arch and I asked where that was from.  He said, "St. Louis, Missouri."  I said, "yeah, that's the arch, you didn't like it at all going up."  He said, "yeah, but going down I LOVED it!"  So wow.  Talk about language.
• Quinn's getting better about talking to him and giving him time to answer and then giving him choices if he's unable to answer.  (This is taking some coaching from Mike and I.)
• I'm beginning to understand that the type of aphasia he does have could be a lot worse.  Just like the type of stroke he had was the best type you would want - this is also the "best" type of aphasia - at least from what I can gather from the Internet.  I need to remind myself to be thankful that he understands us.
• Liam got a homemade card from his best friend - it had a picture of him and his buddy on it and Liam quickly told me it was James. 
• We did get in with one of two neurologists that specialize in stroke from Lurie's Children Hospital (it's just not until Sept. 4th).
• Liam's old preschool teacher stopped by for a visit - he was so happy to see her and will be going to one of her summer camps in a few weeks.  She also sent him a blank puzzle in the mail (which arrived later today) - he agreed with me that we should write his name on the puzzle and then told me how to spell it.  After I drew it once, he gave me a different marker and said, "again" - so now he has a homemade puzzle with his name all over it.

Daily Recap Take One

It's been all too easy for me to get frustrated with our new speech diagnosis.  To think of how he used to be.  To wonder what will come. 

I think I need to take some time at the end of the day to write the positive....

• I put in a request for the medical records from Loyola to be sent to Lurie Children's Hospital in preparation for a second opinion with their neurology team (not yet scheduled - the team is looking into Liam's case to decide which doctor would be best for us to see.)
• Liam was throwing much better with his right hand today while we were outside.
• He continues to climb and swing.
• We went to the library and picked out some Elephant and Piggie books.  We were able to "read" these together just as before the stroke - with Quinn being one character and Liam being the other.  (I would read what the character was saying and Liam would repeat - he's still good at this and was smiling while we were reading.)
• We played Candy Land together and I was able to consistently get Liam to use his right hand to pick up his cards.  (I won two out of three times!)
• I also picked up some books for me that will hopefully distract my mind after the kids are in bed.
• Mike was grilling and Liam said to him, "How many more minutes?" all on his own.

and also what's frustrating me....

• It takes 10-14 days for medical records to be shared.  Of course, who knows when we'll get in?
• I still have unanswered questions now piling up for the neurologist and speech therapist and only one more session of therapy this week
• We're going on vacation next week, which, yes will be fun, but we'll miss therapy.  Also - it's a big family vacation, which, yes is always fun, but I'm worried that Liam will be overwhelmed and embarrassed.  I'm trying to think of a way to keep this at a minimum.
• There's a ton of information on the Internet concerning strokes.  Most of it is about strokes and recovery in adults.
• There's a ton of information concerning aphasia - but again - mostly talks about adults.  None of it is all that positive.
• Liam repeated me and asked the librarian if he could play on the computer.  She asked him his name (a question he's been able to answer correctly many times post-stroke) and he told her the last name of our babysitter.  This is one example of when I saw aphasia's ugly results today, but probably the most heartbreaking, because talking to the librarians was something he's always done and enjoyed.  And now it could easily become a time of frustration and embarrassment.