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.

 

 

Waves

Liam's favorite pool while we were on vacation in the Dell's was the wave pool.  He loved everything about it - getting splashed, the waves pushing him up and down, riding in the tube, jumping the waves in the shallow section... and especially laughing at me when I got splashed!

This picture reminds me of the progress and results we're seeing in him since the stroke.  Some days are very good days - he seems to find his words more easily, his confidence seems high, things almost seem normal.  Other days aren't so good - he struggles most of the day to find his words, he realizes he can't find them, things are clearly not normal.

Yesterday, however, was a very good day.  In the morning hours before speech therapy his words were coming easily.  His confidence was high, which sometimes meant he'd say the wrong word, but would be able to fix it when asked if that's what he really wanted to say.  He went to speech and his therapist said he did a great job with all the activities that morning. 

After speech we ate lunch in the car and headed over to see the neurologist.  The day just got better.

His angiogram showed no abnormalities in the vessels of his neck.  The EEG we had done showed normal activity in his brain.  Most importantly for this test, the activity around the section of brain that was damaged was not slowed at all - the doctor was very glad to report this.  (Just a side note - the area of the brain that did not get blood/oxygen is dead and cannot be repaired.  So, the neurologist is interested in the area surrounding that section.)

I brought up our concern about the daily aspirin Liam has been taking.  Aspirin is a blood thinner and is often prescribed to stroke patients to prevent any further clotting.  Since he's been on this Liam has been bruising more easily (and he really doesn't need help with that) and of course when he falls and scrapes a knee we need to be sure that the blood will clot.  The doctor would like us to continue with the aspirin until six months post-stroke.  After listening to my concerns he figured the dosage of a baby aspirin could be split in half and still be enough for my 40 pound Liam - so we will continue with the drug, but only give him a half a pill a day.  Hopefully this will help with the bruises we've been seeing.

The doctor reminded me of what he told us in the hospital - that all of the children he's seen with this type and location of stroke have no long term deficits.  I was thankful to hear this again after six weeks of recovery.  He said everything will just take time and nobody knows how long.  I voiced my concern about his speech/language and he encouraged us to continue with the therapy and be patient.

We left the appointment and scheduled our next one for December.  December!  Until then all we've got on Liam's schedule is therapy.  No more tests.  No more specialists.  Just therapy!

Busy

I so wish I could have caught a quick nap in the car today.

I've never been the type to over-schedule my kids, or myself.  When choosing activities I'm always careful of making sure we don't try to do too much.  It seems that I just can't avoid this right now.  Between therapy appointments, doctor appointments, tests, and then the normal every day stuff that we signed up for months ago - the month of August is booked solid.

Today was one of those days. 

The boys and I left the house this morning with a picnic lunch packed - and returned briefly to leave Quinn at home with Mike while Liam and I finished up the day.

Come to think of it - we only had three things "to do" - but boy did it take a lot out of me (and Liam).

First - therapy - today was an easy day - just speech, so Quinn came along.  I'm beyond happy to report that Liam's speech therapist reported that he's making "quick progress" and she's already had to readjust a goal she just wrote for him last week.  Good news.  Very good news, in fact. 

I'm also happy to report that Quinn is content (and even happy) to have a solid hour to just sit and read a book - though he doesn't just sit - he's quite possibly the antsiest reader I've seen - but he's happy to have the time to just read and the book must have been good today because he was laughing out loud and sharing the funny stuff with me.

Then, we had a break in the day, but not enough of a break to make going home worth it, so we headed to a new-to-us park for some playtime and a picnic lunch.  (The benefits of packing a picnic lunch always outweigh the dread I have of making lunches - much cheaper than buying lunch AND much healthier than anything I could just "pick up".) 

After our picnic lunch we headed over to Chess Camp for Quinn (one of the normal things we signed up for months ago).  Liam and I made a quick trip to the grocery store and then spent the rest of the time playing at the park.

Finally, we headed home where the boys were able to veg for a bit in front of the TV until Liam and I had to leave for his doctor's appointment.

This one was with his pediatrician and was very interesting.  She shared with me that she's done a lot of research on what has happened with Liam and she truly believes the stroke was caused by the chicken pox vaccine.  We talked about a delayed schedule for this next baby.  She also told me about her own son's reaction to a vaccine just a few months ago.  He had just turned five and a week after having his vaccines started having accidents.  They did an EEG and found him to be having seizures.  These went away after about six weeks and she's traced it back to the MMR he had.  Crazy.  But nice to know she will understand our fear and cautiousness of moving forward with other vaccines.

That being said, Mike and I have also discussed looking for a different doctor.  Our doctor has always been open to our suggestions for postponing vaccines and offering natural remedies before drugs, but has never been the one to suggest anything like that.  When I saw a friend of mine the day Liam had his vaccines (four vaccines) she said, "Four!?  My pediatrician would never do four at once."  I would like a doctor that suggests things like waiting and natural remedies first.  I've been happy with a doctor that agrees with my suggestions, but I might like to have a doctor suggest things to me first.  Things I might not have thought of.

Of course now that I know the history of our doctor and she knows our history - the two of us might be able to better work together.  I think I will ask my friend for her pediatrician's number and interview him/her... just to see what's out there.

I didn't intend for this post to become one about vaccines, but I couldn't mention the doctor's appointment without mentioning what was discussed.  I am sure I will be posting more in the future about vaccines and what we've done in the past and what we'll be doing in the future.

Anyway... after the doctor's appointment Liam and I finally had some dinner and made it home in time for a bath, books, and bedtime. 

(Coming up tomorrow - Liam has an EEG to rule out any seizure activity - something that happens in some kids after a stroke.)

Normal

Between doctors' appointments and therapy - it seems that every day the past month has been consumed by Liam's stroke.  Even the days that could be considered normal, the days when all that's on the calendar is day camp and swim lessons, I usually get a call from someone or I need to call someone regarding something to do with Liam and the aftermath of the stroke.

I've come to love Saturdays.

Today was a perfectly normal day.  We started out slow - declaring it a "Movie Morning" - and then Mike and I divided and conquered - he took Quinn and I took Liam - each of us getting some shopping accomplished.  I actually returned more things than I purchased.  Liam reminded me he had a Toys R Us gift card and so we browsed the store for awhile until he happily picked out a chainsaw.

Lunch time.

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.

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

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.