March 2010 Archives

For the past month, we have been going through a very elaborate evaluation process with the local school district.  They offer pre-school programs for children with disabilities, and they have been trying to assess where Samantha fits in and how her needs can most appropriately be met.

I got a call today from the diagnostician.  It looks like their proposed solution (which we will formally discuss in a meeting on Thursday) will involve sending a physical therapist and an occupational therapist to her current school to work with her, rather than placing her in a program where all of the kids have disabilities.  They feel that she is benefiting from her exposure to and socialization with children without disabilities. 

While I know that the laws make some provisions for these situations, I had no idea that the school district would proactively recommend such a customized approach.  I am incredibly impressed and excited.

Sam had a GREAT day on Friday.  She had her ECI "graduation".  Nanny Jamie took the girls to the park.  She had a huge dinner.  She stayed up a little late to play with Mommy when I got home from a long meeting.

Then, around 10 pm, we heard her asking to get up.  We went upstairs and checked on her.  She was clearly nauseated, but didn't actually get sick, so we settled her down and put her back to bed.  Around 10:30, I heard her whimpering and went up to check on her.  She was still sick, so we tried to help her sit up.  Her leg started to twitch, and she started throwing up.  I called 911.  She went completely and totally limp and non-responsive, and threw up repeatedly.  Then she began to thrash.  Her breathing was shallow.  Her left arm and leg were jerking; we couldn't hold them still.  Her teeth were so tightly clenched that when the 911 operator asked me to check her airway to confirm there was no blockage, I couldn't get her mouth to open.  They asked me to count breaths and I couldn't tell if she was even breathing.

By the time the paramedics arrived, the seizure had just ended, but she was still non-responsive and her breathing was very shallow.  They loaded her onto an ambulance and I rode with her.  We had intended to go to our local hospital, but by the time we got close, she wasn't coming around well.  She appeared as though she'd had a stroke.  Her head wouldn't turn to the right.  The left side of her face was drooping, and she was drooling slightly from that corner of her mouth.  She couldn't hold Bloose the Moose, who sat idly in her lap.  We decided to take her downtown to Memorial Hermann Childrens', where she'd have access to all of her specialists. 

By the time we got there, she was improving somewhat.  A CT showed no apparent increase in ventricle size and no new bleed.  YES!  By morning, she still didn't want to sit up, but her usual charm and humor were returning.  The "Child Life" staff came by and brought her a stuffed giraffe.  She held it up to her face and Daddy asked what she was doing.  She announced, "You have a giraffe in your eye!  You're a pirate!"  Silly Sam.

She saw her neurologist and her neurosurgeon's partner, both of whom thought she looked good, all things considered.  Everyone's best theory right now is that she had some low-level virus or infection that kicked off the seizure.  Apparently, kids this age are a little prone to seizure and Sam is probably more so than most.  So, we are hoping it was a one-time occurence.  We are going to do an MRI and an EEG to further validate the theory.  I am currently fighting bureaucracy to schedule these promptly.

Sam did have some strangely high tone in her legs on Saturday, and I think she's still having trouble adjusting to the tone changes this week.  She's shifting weight around a lot and seems to get tired easily.  And she is absolutely terrified to go to bed at night, where the whole thing started.  I am tempted to offer to let her switch rooms with Ally. 

Ally was blissfully unaware of any of this, by the way.  The child who doesn't sleep through the night somehow slept through the arrival of a fire engine and ambulance with full sirens, 5 firefighters and 3 EMTs tromping around outside her room, and Mom and Dad shouting up and down the stairwell about what to take and who was riding vs driving.  Big thanks to our dear neighbor Sandy who, without any warning, slept on our couch from 11 pm to 4:30 am so Ally could stay in bed.  And another big thanks to our Rice friend Jamie, who kept Ally along with her own two children all day Saturday, even though her husband was out of town.  Friends like these are truly blessings.

In the end, Daddy and I are a little more tired and gray, but all is well with the Friddle family.  Hope we don't do that again though.

Samantha had her very last visit with ECI (Early Childhood Intervention) Friday.  I find that mind-boggling.  They did her initial evaluation on her last morning in the NICU.  I remember the first time they came to visit us at home, too.  Sam had been home from the hospital just a few days.  We sat at the kitchen table, with Sam on the floor next to me in her car seat, snoring audibly.  It was all so overwhelming that I cried  Has it really been three years?  Hard to internalize.  They have done so much to help Samantha get to where she is today.  I hated to say goodbye.  In fact, I cried.  Again. 

 

 

I think it was emotional for them, too.  Her therapists came together and brought her a birthday cake and presents.

 

 

 

 

 

 

 

 

 

 

 

 

Then, we had a little "graduation" ceremony, complete with cap and gown!

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Ally Grace has suddenly developed very strong opinions about her wardrobe.  Fit is of far less concern than fashion (as she views it).  This jumper actually doesn't button all the way up in back anymore, but she loves it!

Surprisingly, given her activity levels, she has decided that she prefers skirts and dresses.  In fact, on many days, she will scream and fight anyone who tries to make her wear pants or jeans.  Generally, it's not worth the battle.  I need to buy more skirts.

 

Yep, just a couple of weeks ago.  Our baby-sitter was as excited as the girls!

Sam loved it until she got cold, then she was over it.

Ally could have stayed and watched all day. 

It was really beautiful.  There were enormous flakes falling in huge quantities - it just didn't stick, because it was about 60 degrees the day before.  But that almost made it more fun to watch.