Feeling Good

Just over a week ago we had a huge celebration in honor of not only Liam's birthday, but also as a thank you to all those people who have helped us out this past year post-stroke.  In lieu of gifts for himself, Liam agreed to have all gifts donated to the play center at Loyola's Children Hospital.  He truly had a good experience there just about a year ago and was more than willing to pay it forward.

The friends and family we invited to our celebration were more than generous.  Books, DVDs, video games, toys, games, puzzles, cars, and so so so much more.  Lots of good quality toys that we know will surely help put a smile on the faces of some patients.

Liam had a neurologist appointment today so we arranged for delivery.  Liam was waiting anxiously for Meghan, the child life specialist, to come down and meet us with some wagons to carry the goods up.

It actually took two wagons to carry it all.

 

After the big delivery we ate lunch in the cafeteria, which we sort of missed after having so many meals there during Liam's stay.  They have a great salad bar!

Then, finally, it was on to the neurologist appointment.  Great news on that front... we're done with that doctor unless we start to notice any unusual behavior (seizures, dizziness, etc....)! 

He did have some concerns about the speech therapy Liam has been receiving and asked me if there was something else they could do to help the aphasia.  My response was that I didn't know of anything!  He vaguely remembers another patient using something so he's going to look into that for me.  We did discuss how the strategies he's been taught in therapy have been very helpful, but still the doctor feels that there's something more they could do.  We'll see how that pans out.  (I'm to call him in about a week.)

It Worked!

Liam's OT made him a removable cast several weeks ago. He had to wear it on his left arm to force him to use and strengthen his right arm. I loved the cast. So much easier than constantly telling him to use his right hand. His teacher loved the cast for the same reason. I also loved that when strangers would ask what happened to his arm he'd reply, "it's a long story."

He had to wear it for 8-10 hours a day. This meant there were times when he'd have a break from it. All of a sudden after about seven weeks I noticed that even without the cast on he was using his right hand! And his private and school OT noticed as well! His time with the cast is over (8 weeks) and he continues to use his right hand for writing without reminders (eating is a different story).

It's important for people after a stroke to use the side that was affected. It helps with building brain function. Plus, his private OT found he had better control with the right - so that's the hand we're pushing for writing.

Conversation with the Speech Therapist

Therapist:  Wow.  He really is sort of bossy.

Me:  I know.  I've missed it.  Isn't it great?

Therapist:  Yes!

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. 

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."

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.)

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.

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.

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.