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.

Lucky

To say I've learned a lot this past month would really be an understatement.  Perhaps the most important lesson I am continuing to learn is to appreciate the situation we are in and the gains we continue to make each day.

This lesson started early in our adventure.  Liam's vitals were always good and he was stable enough for us to be transported to a hospital of our choice over an hour away.

Our first day in the pediatrics ICU we were told, "Rounds start at 9am, but there's no need for you to wait around.  It will be awhile until the doctor's get to you - they always start with the most serious and severe cases and you're last on the list."  If there's ever a time when you want to be last on the list it's when your child is in the ICU and the doctor's are seeing the more critical patients first.  It's not that we were anxious to hear what the doctor's had to say, trust me, we were, we were also thankful that we weren't going to be the first visit of the morning for these doctors.

After spending some time in the ICU we met many parents - all there for different reasons.  After speaking with most I realized just how lucky we were at the time.  Things could always be worth.

We were told by our neurologist that Liam had the best type of stroke (ischemic vs hemorrhagic) and also that if you had to choose and area of the brain to be without blood and oxygen the spot that got Liam would be the top choice. 

I've learned thru reading about aphasia that we really got lucky with the type of aphasia Liam suffers from.  His is mostly expressive - with the nouns giving him the most trouble.  I couldn't imagine having to help him to understand things that are said to him.  His receptive language has been tested and found to be at normal levels.  Also, since Liam's stroke didn't effect the frontal lobe - he is able to repeat words which will in the long run help him with his language recovery.

Spending time in the waiting room while Liam is in therapy is another constant reminder of just how lucky we are.  Some kids are coming in to build their strength after chemo treatments or a surgery.  Others are here for matienance therapy for a life-long disability or disorder.  Last week I met a six year old boy with Rett's Disorder.  I have to be thankful for Liam's progress moving forward - knowing that what we are dealing with is not degenerative disorder - Liam will continue to get better each day - I am lucky for that.

Although in my first paragraph I say I'm learning to "appreciate the situation" - that does not mean that I'm glad it happened.  Not at all.  A five year old child should not have a stroke.  Not a day goes by that I don't wish it never happened or wonder if there's something I should have/could have done to prevent this. 

I suppose I'm learning it could always be worse.  Of course, at what point can you not look at things like that?  At what point in your life are you really at the bottom?  Maybe that depends on each person... I would like to believe that everyone has the ability to look at their current situation and think, "well, this is hard, but it could be worse."

Or better yet, "This is hard, but we'll get thru it and boy am I glad for _________."

Liam taking a snooze in the ER waiting for his transfer.

If It Were My Nephew...

Since I took Liam into the ER over the weekend we were able to schedule an appointment with our original neurologist for this week.   I remember feeling very comfortable with this doctor in the hospital and was pleased to see the comfort level remained the same in the outpatient office.  (Also - as a side note to any ISU grads - his brother-in-law is Skip Schaeffer from the Redbird's basketball team between 1996-1999.)

Because of the funny feeling Liam was having over the weekend, Dr. Coates would like to perform an EEG on Liam to check the activity of the brain, especially in the area that was affected by the stroke.  This will help determine the risk of seizures.  The doctor seemed confident that the EEG will show normal brain activity.  There are no risks to the test and it is non-invasive.  This will happen in a few weeks.

(We mentioned what Liam's speech therapist said about the funny feeling and he explained that that usually happens sooner after the stroke.)

Mike and I communicated with him that we investigated a second opinion at Lurie's and Dr. Coates was pleased with our decision to go there ("If I were to send you anywhere for a second opinion I would have chosen Lurie's and Dr. Wainwright."). 

We asked Dr. Coates for his thoughts on performing an angiogram on Liam as a final test and for a definite answer of "everything is normal".  He said he doesn't normally perform angiograms in cases like this and is confident it would come back normal.  However, he did say, if it was his nephew he would encourage them to "go ahead and do the test." 

We asked about the risks and Dr. Coates said the risks were very low for Liam.  Had the team found Liam to have Moyamoya during any of the testing, then the risk for the test causing a stroke would be high because of the nature of the disease.  But, Liam does not have anything showing that would make our doctor believe the test to be risky.  Also, the dye that is used in the angiogram is the same dye (or contrast) that they already used for his MRI and MRA.  (Rarely patients are allergic to the dye and that causes their vessels to spasm.)  The biggest concern would be the general anesthesia that would be needed to perform the test.  This test is definitely invasive and the decision to move forward with it is something we will seriously consider.

As our appointment came to an end Dr. Coates said, "I feel like we have a good plan for moving forward."  I couldn't agree more.  We've got the EEG scheduled, another follow-up appointment, and maybe an angiogram.

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.

That Funny Feeling

Liam had speech and occupational therapy today.

I told his speech therapist about how we ended up in the ER because Liam communicated (after choices) that he had a "funny feeling" in his face.

Want to know what she said?

She said that often as patients are recovering from a stroke they will get a tingling or numbing sensation as the nerves reconnect. 

I admitted that nobody ever told us that.

My guess is that feeling probably surprised Liam, or even scared him, and that is why he was crying.

I'm not sure if I wouldn't have taken him into the ER knowing this, because even the therapist admitted that some stroke victims will assume another stroke is happening when they feel that sensation.

So the good news is Liam's nerves are reconnecting. 

The bad news is I'm not sure I'm asking enough questions of the neurologists or the right questions.  I mean, we've seen three different neurologists now on three different occasions (hospital, second opinion, and ER) and not one of them mentioned this.  Maybe it's something they're actually not that familiar with and something that therapists that work with stroke victims are very familiar with.

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.

Hematologist

We waited a very long time to see the hematologist today. Only to find out what we already knew - all the blood work came back negative. Liam does not have any disorder in his blood that would cause a stroke. Also, the tests that were suggested to us yesterday were performed, the neurologist just didn't see them in the report. And lastly, there are no other possible tests that could be done with Liam's blood.

I'm not sure why they had us come in instead of just calling us, but the doctor did seem very interested in Liam's progress.  He did the usual test on Liam - looking at his strength. 

Pretty cool waiting area.  We only waited here for about five minutes. 

It was the hour plus wait in the exam room that nearly put us over the edge.

Second Opinion

I know.  I know.  It's been an entire week since I last updated.  We've been busy.  We took the boys to their first Drum Corp show, left a day early for a vacation in the Dells, swam, swam, and swam some more.  Everything was awesome.  We had to take Liam home two days early from vacation to make a neurologist appointment in the city. Since we felt just a tad guilty about leaving vacation, we decided to make a day of the trip.  We took the train, a taxi, visited the zoo, and got some popcorn for the train ride home.



At the zoo 

The neurologist thought Liam looked great.  He tested the strength on this right and left side and said there was still a slight weakness on the right - something Liam's OT and PT have reported.  He also said that there's no treatment or drug that is given to children while they are in the acute stage of a stroke - so nothing different could have been done in the ER or at Loyola upon our arrival.  He agreed with the plan of treatment that was given to us (therapy and a baby aspirin a day).  He took the medical reports we brought with and studied them in his office for about 40 minutes while we waited.

Waiting at Lurie's Outpatient Center in Lincoln Park

After looking over the report he did suggest one more test that would give us a definite answer to be sure there are no blockages in the neck.  A type of angiogram - it would require an overnight stay in the hospital, sedation, inserting a dye into his blood stream, and checking the arteries in his neck.  These were checked with the MRI and MRA he had done at Loyola, but this test is just more accurate and would show smaller blockages that might not appear on the other tests. 

If this test comes back normal than this neurologist would consider this stroke to have no known cause.  I will say here that the main doctor at Loyola that oversaw the case feels that serious consideration needs to be given to the chicken pox vaccine causing this stroke - if no other causes are found.  Our own pediatrician also agrees with this.  There have been reported cases of this happening in other children.  I will definitely be talking more of this in the future.  But for now our goal is to focus on ruling out any cause that would require a specific treatment and for continuing with our therapy.

It this test did show a small blockage then Liam would be monitored as he grows with MRIs and would continue the aspirin regime. 

I'm not sure if our original neurologist will be suggesting this very same test at our follow-up appointment.  It needs to be done after the acute stage of the stroke is over so this may be something he already had on his radar.  We will be asking him for his opinion before we make any decisions.

The neurologist from Lurie's (second opinion guy) also suggested a few blood tests that he didn't see on the report.  We're seeing the hematologist today so we'll bring those up with her.

The view from the doctor's office.

Obtaining Medical Records

Today I picked up all the records from Liam's hospital stay.  I requested them three days ago and was told it would take 10-14 days to process.  If you need to obtain your personal or your child's medical records in a shorter amount of time than promised (because you have an appointment with another doctor) here are some helpful hints to follow.

1. As soon as you decide you'll be seeking a second opinion or that a follow up with a different doctor is in order contact the medical records office to fill out a release form.
2. After obtaining, completing and faxing in the release form call the office once again and ask to speak with a supervisor.
3. Explain your situation to the supervisor.  (I have always been a big believer in being nice to strangers, especially strangers that are in a position to help you.  It is not that person's personally philosophy that it should take two weeks to get records and that person will most likely respond to kindness and a clear explanation of what you need and when you need it by.)
4. If you need a copy of any tests that were performed you may need to contact another office.  In our case I needed to contact radiology to obtain a CD copy of the MRI images.  The supervisor from medical records was able to supply me with the phone number and also called radiology herself to give them a heads up.
5. Let both offices know that you will be picking up the records and hand-delivering them at your doctor's appointment.  This is much faster than mail.
6. Be sure to bring with a photo ID when picking up the records.

Please don't ask the medical records department to process your request faster than you actually need it.  If everybody who was asking for their records did that I probably wouldn't have been able to get Liam's records so quickly.  However, if you have a second opinion appoinment scheduled and need the records I hope that you find this process as easy as I did. 

I also learned that if you already have a doctor that you've been seeing and he/she wants the medical records their office can request the records.  Since Liam will be a new patient for Lurie's Children Hospital I needed to obtain the records.  Once he is seen by a doctor there they will be able to ask for access to his records with our permission.

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.

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.

Knock Knock

After Liam was done riding his scooter outside he sat next to me. 

I knocked on his helmet and said, "knock knock."

Liam - Who's there?
Me - Banana.
Liam - Banana who?
Me - Knock Knock.
Liam - I'm not answering!

awesome.

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.

Signs of a Stroke (in children)

According to the book, Caring for Kids, strokes afflict about 1 child in every 20,000.  Liam's speech therapist shared that most people don't recognize the signs of a child having a stroke, because it's not something people typically think of when a child is exhibiting abnormal behaviors.  Some may explain the behavior by thinking the child just isn't feeling well, is over-tired, or acting goofy.


I will admit that my first thought when I noticed something with Liam was that he was over-tired and acting goofy (because, boy, is my Liam ever a goof-ball!).

We were about an hour away from home and spending the weekend at my sister's house while Mike painted the baby's room.  We spent all day Saturday swimming, watching movies, swimming some more, and then playing a bit of Wii before bed.

We finished up a game of Wheel of Fortune on the Wii and I had the boys go upstairs to get ready for bed.  Liam went up the stairs just fine.  I'm not sure when it happened, but the boys were laughing with each other (or maybe just Quinn was laughing) - I was tired and just wanted to get them into bed, so I told Liam to go use the toilet.  He started crawling to the bathroom and I told him to get up and walk.  After counting to three (my usual "it's time to listen method") I picked him up and put him on the toilet.  He became upset and started crying and when I went to look at him he was having troubling standing and pulling his pants up.  I helped him, still thinking he was way over-tired, up past his normal bedtime, and had him walk back to the room.  As he was walking he ran right into the wall on his right side.  Then I started thinking maybe something is wrong.

I stood him up in the hallway, had him look at me, and knew something was wrong.  I took each hand and had him squeeze my fingers.  He could not squeeze with his right hand.  He couldn't move his right arm at all.  I then made him smile and noticed that the right side of his face stayed down while the left side smiled.  (He wasn't talking or crying at this point at all.)

At that time I called for my sister to come and look - I don't think she saw anything, but I assured her "we have to go" - I left Quinn with my brother-in-law and my sister and I headed to the nearest hospital. 

On the way I noticed Liam wasn't talking, couldn't move anything on the right side of his body.  I still wasn't thinking of a stroke.  Who would?  We got to the ER around 9:30pm and the first thing the nurse mentioned was Bells Palsy.  The nurse and the doctor encouraged Liam to stick his tongue out, squeeze their hands, and lift his legs - none of which he could do until after a few hours.  He wasn't talking at all until about midnight.

Liam - 11:00pm - June 30th

about two hours after I first noticed something was wrong

Look at the eyes - and the crooked smile

After a CT scan came back normal the ER doctor told us we'd have to transfer to a hospital with a pediatric neurologist because clearly something was wrong, even with a normal CT scan.  We left St. Anthony's hospital in Rockford for Loyola's Ronald McDonald Children's Hospital at 1:18am - four hours after arriving in the ER.

We arrived at Loyola at 2:30am and quickly made our way to the Pediatric Step-Up unit.  I'm not sure what time we saw the neurologist, but as soon as he saw Liam he said he felt he suffered from an acute stroke (meaning a stroke that came on suddenly) and he ordered an MRI stat (right away).  It wasn't until almost six hours later that Liam had an MRI that showed that he did in fact have a stroke. 

There are two types of strokes: ischemic and hemorrhagic.  Ischemic involves a clot - hemorrhagic involves bleeding.  My understanding from 100 Questions & Answers About Stroke, if he was having an hemorrhagic the CT scan would have shown bleeding in the brain.  Of the two - an ischemic stroke is the one you'd want to choose if you had a choice in the matter.  And luckily for us, that's the type that Liam had.  By the time the MRI was performed the clot had already cleared and blood was already flowing to the part of the brain that was affected (the basil ganglia).

I've described what I saw in Liam, but thought it might be helpful to list the signs of a stroke that I read about in Caring for Kids.

• weakness in one side of the body
• weakness of facial muscles
• changes in vision
• difficulty swallowing (drooling)
• difficulty with balance and coordination
• older children might complain of headache

Day 9: Exhaustion Never Ends

I've got much to write... but figured I had to start somewhere, so I might as well start with today.

Each day since Liam's stroke my thoughts on his progress vary.  On one hand - he was able to physically walk out of the hospital just four days after having a stroke.  Then, the next day he pulled himself up on a swing and was swinging!  Swinging! 

My biggest concern isn't the motor function (which I was told by the neurologist he would recover) - my biggest concern is his speech and language.  Before this my Liam was a talker.

Now.  Our house is so quiet and Quinn isn't picking up the slack. 

Today we saw all three therapists for the first time that will be working with him.  [Speech, Occupational (OT), and Physical (PT)]  All three were impressed with how well he was doing for being so soon after a stroke.  Well, from what I remember the PT and OT expressed how impressed they were.

Liam has trouble recalling words.  This is called: aphasia.

Liam - after 3 hours of therapy.

By the end of the day I am exhausted. Exhausted from watching him sit silently in the car.  Exhausted from listening to him struggle to find the right word for pictures in books.  Exhausted from saying "Show me." when he struggles to tell me what he wants.  Exhausted from wondering if his brain will fully recover and the aphasia will only be a distant memory for us all.  Exhausted from looking for neurologists for a second opinion.  Exhausted from reading about any new and unfamiliar words that have been introduced into my vocabulary.  Just plain exhausted.  I sleep well at night and wake up refreshed and ready to go.  But by 7:00 I've had enough.