"We witness a miracle every time a child enters into life. But those who make their journey home across time and miles, growing within the hearts of those who wait to love them, are carried on the wings of destiny and placed among us by God's very own hands." ~ Anonymous.

Friday, February 25, 2011


It's been a very doctory week around here.  Monday, M had her 4 hour EEG to see how things are looking after the Sabril wean.  Wednesday, she had her swallow study to try and get some answers about her previous aspirations and constant gagging.  Thursday, E had his sniff...sniff...FIVE year old well child check up. How in the world did he get so old????  We had to bump it up from May because we needed "well child" letters for our updated homestudy. 

EEG went well.  We had a really good tech who was super fast at getting her all hooked up.  He asked if I was okay with the crying screaming and if I wanted him to just "get it done" and I appreciated that.  In my experience, the more you try and fluff kids through stuff, often the more anxious and upset they get.  M HATES having her head touched (geez, I wonder why) so EEG time is her least favorite time.  She was completely wired, wrapped and calmed down in under 20 minutes - a record, for sure!  We hung out for four hours, she ate, napped like she was supposed to, played, had some seizures, and then we unhooked and went home.  Unfortunately, the results were not favorable.  She is again showing an electrodecromental response (classic Infantile Spasms) which means we have to put her back on the Sabril.  She is also showing more general disorganization bilaterally and focal activity primarily in the right posterior.  She is having multiple sub clinical seizures when awake and even when asleep.  We increased her Trileptal, will restart the Sabril and wait a few weeks before we discuss again weaning the Keppra.  I'm sad....she was doing so well developmentally off the Sabril that I hate to put her back on it, but we can't let the IS continue to damage her already damaged brain.

The swallow study went fairly well and was definitely informative.  They were running behind, which for a girl who was starving was not cool.  As it turns out, M has a 5/30 projection fraction.  Basically for approximately every 30 times she swallows, 5 times the food or liquid slips under her epiglottis and into her trachea.  Each time it occurred during the study, she was able to recover without aspirating, however, this does place her at higher risk for future aspirations.  It also seems that it takes her on average three swallows to empty her mouth and throat instead of just one.  We will be exploring thickening her liquids and medications and will be feeding her slower and in very small bites.  It is possible that during her last shunt surgery in January (since after that is when this all began) some nerve damage occurred to her vocal chords or throat.  We'll be talking to her ENT about this at her upcoming appointment in a couple of weeks.  It's also possible that her reflux medication dosage needs to be increased since it hasn't been adjusted in over a year.

E's pediatrician appointment was extremely informative and he did such an incredible job!  For a sensory kiddo, visits to the doctor are always incredibly challenging.  He did awesome - he wore the gown, let her look in his ears, eyes, do his blood pressure and his exam with very little fight.  He got 4 shots and was quite forgiving.  The nurse brought him a sucker and he said "I don't really like candy, do you have anything else for me?"  Overall, the doc was extremely impressed with his language skills, his intellectual ability, etc., but not so much with his growth.  I was expecting that.  He's gained two pounds in the last two years.  In fact, he's been hovering between 29-32 pounds for OVER two years!  He is at 41% for height and 3% for weight.  She is now concerned so he had some blood drawn to begin exploring the possibility of other underlying conditions.  He eats a good amount of food and excellent quality - whole milk, full fat yogurt every day, fruits and veggies, pasta.  That said, he never stops moving, either.  He is in constant motion!  She immediately noticed his "special" twitches and "ticks" as well as his sensory issues and discussed patching him in to the developmental clinic and following up with neuropsych.  Off the doctor subject, but on the developmental subject, we have finally won the battle with school over getting him therapy services.  His IEP is being written and he'll be receiving SLP and OT beginning soon!

So, it's been a busy week, but feels good to have answers and plans.

Monday, February 14, 2011

M's New Specs

I truly didn't believe it was possible for her to get any cuter!! 
I was wrong again!!

Tuesday, February 1, 2011

Future Hollywood Makeup Artist??

I wish I could say that opening my email to find new pictures of K brings me only joy, but it also brings sadness, anger and guilt.  In any case, I am still grateful for them.  I am grateful that she is growing and finding some moments of happiness in her life.  I am especially grateful that she, like her brother, loves to draw on her own face!!