The Story

One disservice that I think parents tend to do is to not talk with their kids about tragic events or things that might seem like something they don't need to know about.

Kids often ask questions and too often those questions are dodged by parents having the best of intentions. 

After talking with the team at Liam's school I wrote a little story about Liam's stroke and his recovery - meant for kids.  There's one part I'm not proud of - I don't say that the doctors feel the vaccine caused the stroke.  I do not want other parents being upset with me when their child says they don't want a shot!  Of course, I could have said Liam had reaction to a medicine...

Anyway, here's a link to the story if you're interested.  It would be neat if I had an illustrator and could actually make a book.

Speaking of avoiding topics with kids - have you seen this?  It's a post I wrote a long time ago, but one of my favorites.

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!

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.)

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.