So proud

I vaguely remember Madalyn asking me how to spell "sticker", and a few other random words last week.  Last night, I found the cards she must have been writing, along with  a sealed envelope to her teacher.  I'm so happy  that she is proud of getting stickers, but I must admit the cards made me sad thinking about the many times she didn't feel proud for the numbers she got several times per week. Since starting Focalin, she has had smiley faces each and every day.  I hope the medicine continues to help her do "good listening" at school and home. 

Josephine-words, and botox

Josephine is doing very good.  I was excited the other day when she put two words together.  She was pretending to put a purse on her shoulder and go bye bye.  She closed the door and said, "bye bye mommy". 

She is saying lots of words, like up, stop, no, dog, eat, bottle, toy, tree, flower, ball, bye bye, Jesse (for a TV show she likes), Barney, ouch, book, read, apple, hotdog, baby, all done, more, weeweewee (for requesting "this little piggy went to the maket"), peekaboo, yumyumyum, open (pronounced "oppa"), wash (used for washing floor dishes, her face, and her nose), night night, amma, nana, sissy, Lynda,...and I'm sure lots more I'm forgetting.  She still says "thank you" in Mandarin many many times per day.  It makes me smile every time she says it!

I'm still concerned that she has not started stringing words together, as plenty of other kids home from China, her age, have done.  However, I do know that sometimes kids with strokes just take longer to get there.....but, they often, do make it all the way.....in their own time.

The tightness and jerking in her arm is still significant.  Therefore, we tried botox last week.  We should start to see it loosening up this weekend.  She did great, and Dr. Veda did a great job of getting all the shots done quickly!  She screamed during it, but recovered quickly afterwards.  I didn't pass out during it, so it was a successful afternoon.

As we were leaving, I saw a doctor whose name tag I recognized from the bottom of some of Madalyn's EEG reports.  I told him I recognized his name as the doctor that wrote our EEG reports, and he asked me if I wanted to see her EEGs!  I said YES.  He then pulled up the actual EEG on the computer, and showed me how you can tell which waves are spikes, and what the other stuff means, such as eye blinks.  I had tried to figure it out by googling it and never understood.  But after showing us,  my mom and I were able to look through and successfully pick out the spikes.  The spikes to me were the pointy, and less rounded ones....now  He  also said quantity, frequency, and size of  of spikes do not correlate to how often a child will have clinical seizures.  I  knew this, but always want to know more! 

Just like an MRI will not predict the involvement of a child's motor deficits,  learning, behavior, or speech difficulties,  an EEG will not predict the severity or frequency of seizures.  It still seems like enough studies could find predictors,  but perhaps they aren't reliable enough to use.  Or maybe they are telling me the whole truth and there is no correlation.  Although I know it doesn't matter, it's one of those things you wish you knew about your kid's future.

First grade is hard

First grade for Madalyn has taught me a lot.

Best news first.  Madalyn loves school.  Her teachers and peers love her, and no one would know she is struggling with reading and math based on playing with her, or having conversations with her.  She interacts great!

I never knew the path that led parents to say "children don't come with an instruction manual".  They weren't being funny, or even creative when they said it, they were feeling a little lost as they researched, asked, thought, and fought for the best ways to help their kids ultimately be healthy, happy, succesful, educated people of the world.

Also, I have a new appreciation for my friends that have walked this path before me.  I didn't realize what the months or years of struggles, of not keeping up with their classmates,  never making it to treasure box, and even being sent to the principal's office felt like for the child or the parents.

And then there is this new math stuff.  I never thought I would enjoy sitting at a child's table with an abacus and a million worksheets, trying to explain that 5 groups of 10 make up 50.  Or that 31 is 3 groups of 10 and 1 left over.  Only to discover that counting to 100 is still the issue, and that her class is now to numbers to 120 counting by 2's.  But she is my favorite student to work with because she will sit and try and try and try.  All the while with a proud grin on her face, even when she doesn't understand.  She's just proud to be sitting still and trying!  I'm hopeful for her future because she is learning and making huge progress.  However, her progress isn't  fast enough which leaves me with a lot of work to do to determine what's best for her.

Her teacher is also working hard to determine what is best during the school day.  She failed the new required dyslexia screening test, which may allow her to join the 2-3 year 3-5 day per week Dyslexia program that is offered at her school.  My theory is that making connections through this program, could help make connections that could help her in all areas, including math.  The book, "The Brain that Changes Itself", is very uplifting, by explaining how  our kids can overcome learning issues with the proper brain exercises! Basically when you intensely tackle one learning difference, such as Dyslexia, it can "fix" other areas as well.  I am so hopeful about this for Madalyn.

Her neurologist recommended we try ADHD medicine since her seizures are under control.  It's common for kids with strokes and kids with epilepsy to have problems with memory and concentration; Madalyn has both a stroke and seizures so ADHD medicine may help her.  She started Focalin 14 days ago.  So far her teacher feels it is helping her.  She has received a smiley face all 9 school days since beginning it.  This is her personal record!  She made her first passing grade on her  comprehension test on Friday.  Unfortunately, her Friday math score remained the same, around 50%.  But, reading at this point is most important, so I'm thrilled with this tremendous progress.

Next month she has an appointment with an educational psychologist that specializes in strokes and seizures.  He will do testing to see if she has any learning disabilties.  Last year's testing showed some rather large discrepencies between Verbal and nonverbal and math, which could point to learning disabilities.  I suppose most lucky would be if it is Dyslexia only, but regardless, knowing the testing results will help her get what she needs to be successful.  Until then, as Dory says, will "just keep swimming"  Or dog paddling, as it feels like right now!