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!

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.)

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.