First Days

 

Yesterday was the boys first day of school - Liam starting kindergarten and Quinn starting second grade.   The past two weeks have been difficult for me.  I've probably spent too much time thinking about how the start of the school year was supposed to be - how Liam was going to be without the difficulties resulting from his stroke.  I won't go into the details, but he was going to own that place.  His confidence, his personality, his language, his friends...

 

Anyway... I must say that after the first day I felt much relief.  The speech therapist and occupational therapist made sure to touch base with me during the brief 30 minute window given to parents to meet the teachers/drop off supplies.  They also introduced themselves to Liam and the occupational therapist played with him outside for a bit.  His teacher has just been absolutely amazing in her communication with me and gave me a big thumbs up and a smile at the end of his first morning.  Liam also came out with a huge smile on his face.

 

He wasn't worried or nervous at all about starting... it was if he did own that place.  I'm still nervous that he's going to struggle to communicate with his friends, but after watching him play with one of his good buddies yesterday after the PTA sponsored picnic, I felt a bit better.

 

Another bright note - he had a homework assignment to put two things into a small paper bag to help describe him.  He immediately said, "I am strong," and found a 3-pound weight that would fit into the bag.  Then he struggled for what else and I asked him what he likes to play... "Baseball" - so he went into school this morning with those two things and I hope that the words come easily to him while he's describing them to his class.  We also had to decorate a paper-cut-out of a boy and he was able to communicate with me his ideas (with some help).

 

I'm going to try to follow some advice from a good friend and focus on what's in front of me right now and just take very brief glances at the past and the future.  It hasn't been easy for me to imagine what this week would have been like if the stroke never happened.  But, it did happen, and the support I've gotten thus far from the school has been amazing and Liam, so far, seems happy and excited to be going to kindergarten.

 

 

Caught Off Guard

Yesterday while Liam was with his occupational therapist I was caught off guard when the pediatric physiatrist came to speak with me about him.  I've been meaning to make an appointment with her, but have been waiting 'til all the tests were done.  She oversees the treatment plans and provides her expertise to the therapists working with Liam.  She's certified in physical medicine and rehabilitation, pediatric medicine, pediatric rehabilitation, and neurodevelopmental pediatrics.  She knows her stuff and I was looking forward to having an appointment with her. 

I just wasn't prepared for our appointment and I was a little shocked when she sought me out - but I guess that's how she keeps on top of things. (This place is amazing at keeping on top of things.)

Anyway, she was the first to not be so optimistic about his recovery, especially with his language (aphasia).  He's apparently past the "rapid recovery period" of six weeks post stroke and based on his progress so far this will definitely last past Christmas (this information is important to know for a future post regarding the vaccine).  I had a feeling we'd be in this for the very long haul, I just wasn't ready for a doctor to confirm my thoughts.

She also stressed the importance of forcing him to use his right hand and the right side of his body.  We were really great with this, but after awhile he would just become so frustrated I felt guilty - he has so much frustration with his speech I should at least let him use whatever arm/hand he wants.  Last night we put his immobilizer on him while he was eating dessert - so he had to use his right hand to eat his ice cream bar.  She sighted studies that have shown that forcing stroke patients to use their affected side increased brain connections (shown via functional MRIs) and therefore it will also help with his speech/language.

Liam - with the immobilizer on his left arm, forcing him to eat his pizza with his right (weeks ago).  After about five minutes he asked for me to take it off. 

It was great to meet with her and I'm so thankful for everything that has been done for us and Liam via this rehabilitation hospital.  I would have loved to have known I was going to see her so that I could have prepared myself with questions and with the possibility of not-so-great news. 

Angiogram

We decided to schedule the angiogram we discussed with our neurologist.  The risks were low and it seemed like a simple procedure.  When I called to schedule I was asked if I thought Liam would be able to lie still for about ten minutes - this would allow us to avoid having to sedate him.  I asked more about the procedure and was told he would have an IV inserted, pictures taken with a CT scan, a dye inserted via the IV, and then more pictures. 

When we were at the ER he did a great job for the emergency CT scan without sedation.  So I figured he could do it again.

Our appointment was yesterday afternoon - I could tell he was nervous about it when he didn't want to get out of the van.  I assured him everything would be fine and he would be safe with the doctors.

The placement of the IV didn't go very well.  He hated it, cried, and screamed.  Which was strange, because he had an IV at the ER and was fine with it - watched as it was inserted.  Turns out that first IV wasn't placed well and when they tested it with saline it hurt him (hence the screaming)!

So, they had to try again.

Poor Liam.

Once they had a proper IV in the technician, doctor, and nurses were able to calm him down.  Promises of chocolate, stickers, and even some money were involved.

(Since I'm pregnant I couldn't be in the room with him, so Mike had the privilege of being with Liam and trying to help calm him.)

Once it was all over with, Liam, Mike, the doctor, and technician came to the waiting room where I was and declared that Liam "won the game!"  "He was the best patient and laying still during the pictures and the pictures turned out great!"  Liam was rewarded with chocolates, stickers, and a dollar from the doctor.  (This doctor also removed his white coat and threw it on the floor when he went in to see Liam and Liam started crying because of it.)

Afterwards we went to the zoo for dinner since we were only about five minutes away.  I thought Liam would be starving and eat everything in site (he couldn't eat for four hours before the procedure), but he barely ate.  He did enjoy parts of the zoo and was happy to be able to by a mold-a-rama bear with his prize money.

At the zoo

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.

False Alarm

It could almost go without saying that after your child suffers a stroke the fear of it happening again will always be with you.  Always in the back of your mind.  Especially, if the cause of said stroke is yet to be determined.

This fear may not be warranted - after all, you've been dismissed from a highly regarded children's hospital being told the chance of a reoccurring stroke is very very rare.  You've gotten a second opinion from another highly regarded children's neurology department and have been told that although the doctor cannot guarantee that another stroke won't happen, the chance is very rare.  Your child has had countless tests, has been making nice progress in therapy, and overall seems healthy.

But that fear will be there.  After all, your child was perfectly healthy before the stroke.  The chance of a stroke ever happening in a child is rare and yet it happened to yours.  You've learned that there's one more test that could be done and it hasn't yet been done.  So you learn to push that fear in the back of your mind.

Until you go to tuck your child into bed for a much needed nap and he starts acting strange. 

Liam's stroke all started with him acting strange or goofy.

I wasn't thinking stroke, because his behavior wasn't as extreme as it was July 30th.  I was thinking that he had a transient ischemic attack (TIA). 

I was also thinking he was just tired and needed to sleep.

It started with him crying.  Since his ability to express himself is still difficult, if not impossible, in situations that are different from day to day phrases ("I'm done." "I need to go to the bathroom." "I want ______."), he couldn't tell me why he was crying.  So I gave him choices... "are you sad, does something hurt, does something feel funny?"  After our broken conversation he said something feels funny and pointed to his cheeks.  We did some of the neurological tests they've done in the hospital and at every follow-up appointment we've had since then.  We didn't squeeze my finger with his left hand. 

He just seemed "off". (and tired)

So, off we went to the hospital.  On the way I called my doctor's office to see where we should go.  Back to Loyola or to the closer hospital.  The doctor's advice - "Elmhurst won't know what to do with him.  Go ahead to Loyola - sounds like he's stable and they know him and will have people on staff who know what to do."

By the time we got to Loyola his mood had improved, but he was still saying his cheek felt funny.

To make a long, and sort of boring, story short: We spent about 3 hours in the ER being checked out by the attending doctor, and a pediatric neurologist.  He passed all the neurology tests with flying colors.  The decision was made not to do any imaging, but nobody there ever made me feel guilty for bringing him in for what could have been nothing.

As a matter of fact, they gave me the number to call to get into our original neurologist sooner than August 29th.  I was told to explain to the receptionist that he was seen in the ER today and that the neurologist that was on call would like his follow up to be moved as soon as possible.

Looking back and reflecting I'm confident that he didn't suffer a TIA and he was just overtired.  I do not regret taking him in to have the professionals look at him.  (Even if he did suffer a TIA that would not show up on a CT or an MRI - since he was presenting well while we were there, I'm assuming that is why they decided not to do an MRI.  And, of course, I did hear the doctors discussing how they cannot justify doing an MRI anytime a five year old complains about his cheek feeling "funny" - especially since the neurological tests they performed showed no signs of a stroke.)

I need to go back to focusing on therapy and making sure he gets enough sleep.  (We were out late last night and he does better with a good amount of sleep.)

Probably too happy to be in the ER.

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.