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.

 

 

House Rules

I just finished creating this list of "house rules" using my favorite scrapbooking software.  Some of the ideas for rules I saw on pinterest and others I thought of myself.  I hope my boys learn to understand the last one - in relation to their behavior towards others, but also in relation to how they treat their bodies.  We have multiple conversations throughout the day about why we eat what we do and why we avoid eating and drinking certain things.  Quinn has reached the age where he insists that when he grows up and makes his own decisions he's planning on eating McDonald's every day with an extra large Pepsi.  (I will say I'd rather him drink a regular Pepside than a Diet, but still...) Some might say we're encouraging this rebellion by not allowing him these things as a treat once in awhile and I need to insist that we do offer treats, but not "treats" that Mike and I both consider to be toxic and addicting.  Someday I'll write a post about what we avoid in our foods/drinks and why, but until then.... take a look at our house rules and let me know if you see any typos or if something looks "off".  I'm planning on having it made into a wall print, framing it, and hanging it in a much used room of our little house.

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. 

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!

A Little Fish

"It's a little fish swimming around looking for the food."  Liam - describing his poop.

At least he's still got that ability.

(you'll thank me for no picture to go along with this post.)

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.

EEG? Easy.

Everything about Liam's appointment today was easy. There was little to no traffic on the way - allowing us time to get a little treat before the EEG and still check in early.

We were seen earlier than our scheduled appointment time. Liam was very cooperative as the technician placed dots of cream on his head and then the wires. Liam tried his best to keep his eyes closed when asked. He did great breathing loudly when asked. And he laughed as the light was flashing in his eyes. Liam remained calmed as the technician removed the wires and cleaned off his head.

Results should be known in a few days. I'm not planning on calling since we'll see our neurologist in less than a week.

Coming up tomorrow - a doctor's appointment for me!

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.)

Great America (on a budget)

Taking a trip to Six Flags can really eat at your bank account.  Every year Quinn's school does a reading incentive program - read for six hours and earn a free ticket to Great America.  With regular ticket prices costing $62, parking $20, and kid prices at $42 - the cost to take your student to use his free ticket can really add up.
Luckily, being a teacher, I also usually earn a free ticket (for entering in the data required for my students to earn a ticket).  But still, to go I'd have to pay for parking and a ticket for Liam.  Also, this year, since I'm pregnant I knew I wouldn't be able to go on many of the rides with the boys - so we waited for a time when Mike could come with.

It could have cost us $124 just to get into the park! 

I searched online for "discount great america tickets" and found a promo code that allowed me to pay only $30 each for Liam and Mike - so it only cost us $80 to get into the park.

That's still a lot of money, but much better than over a hundred.

Anyone who has ever been to Six Flags knows that the most costly portion of the trip might not necessarily be getting into the park.  Once you're in you are bombarded with food, treats, souvenirs, drinks, games, and rides/attractions that cost extra.

The most important thing to remember when going to Great America is this - decide ahead of time that you will not be purchasing any of these items in the park.  Pack a lunch to leave in the car, snacks for a backpack, and water bottles.  This plan will only work if you explain ahead of time to the children (and the husband) that you will  not be purchasing any of the extra items in the park.

We took the boys this past Sunday and enjoyed beautiful weather.  The park got very crowded as the day went on, but we were able to hit some of our favorite rides in the first two hours with little waits.  I did break my "not buying anything" by surprising the boys with cotton candy (a very rare treat for my kids) and only because cotton candy from the zoo was promised to Liam after his angiogram, but every kiosk in the zoo was closed by the time we got there!

Liam's favorite ride was the "Scenic train" around the park and Quinn absolutely loved the Whizzer!  Both boys enjoyed the two water rides...

after Logger's run

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.

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

Confidence

I'm not sure if it's typical.  But Quinn, at seven and a half, has the most confidence of any child I know. 

He'll try any water slide, climbing obstacle, and challenge put in front of him. 

If he doesn't know the answer and you tell him, his immediate response is, "Oh, yeah, I was about to say that."

While watching American Ninja Warrior he insists that he'd be able to do all of the obstacles - if only Mike would build them for him.

Now, with the Olympics on, he's decided that next summer he will join the local swim team so that he can go to the Olympics and win the gold.

I honestly do not remember ever having this amount of confidence as a child.  Maybe I did and forgot about it.

For now I'll try my best to find a good balance of encouraging his confidence and keeping the boasting under control. 

I just wish I could bottle this all up and serve it to him when he's an awkward teenager.