She likes dirt

On most days, Emma is just Emma to us.  We don't see her physical characteristics of Ds very often.  On Saturday, when she was playing in the dirt, I saw it in her.  I just had to capture how cute she looked, especially how she curled up her legs!  It is moments like this that are very surreal to us.

She was cooking-of course!  Anyone who knows her knows that pretend cooking is her true love right now.

The Dan Peterson School rocks!

Emma's annual IEP(Individualized Education Program) was held the beginning of November.  It was to discuss how her disability affects her involvement and progress in the general curriculum and to go over her healthcare plan.  We went over her previous goals and I found out she met several goals throughout the year!  I was pleasantly surprised with her new goals already set for the year.  The team went over new things I can work with her on at home.  Rainbow writing, tracing(her name), play dress.  I love LOVE her school, they are right on target with her.  I appreciated that her teacher really knew her and knew what she needed.  The new principal (Kim Wong) was fantastic and really encouraging to me.  I think that the therapists there do an amazing job.  I feel so much support from this school and KNOW that I made the right decision placing her there.  I was concerned that she would be lacking social interaction at this school.  So, I thought it was very interesting that her teacher commented to me that Emma seems to thrive being on top(She is the only one in her class that is ambulatory).  It was very validating to hear that she is in the right place(at least right now) to learn and progress.

They are so lovable!

I've been told countless times that people born with Down syndrome are so lovable.  Unfortunately, Em is sick all the time and can't show us that side very much(sickness=high blood sugar=grouchy).  Today, however, was a rare treat for me.  The morning started off a little rough, she woke up with a cold and it of course was wreaking havoc on the diabetes(that is nothing new).  After her nap she became so lovable with me.  That hardly ever happens since I am the one usually taking care of her medical care, pushing her in home therapy or having to disicipline her during a "meltdown".  I was in heaven, she was hugging and attached to me all afternoon.  It amazes me how her amazing spirit manages to shine through, at times, all of the crap her body is put through.  I can't believe how lucky we are to have her in our family!!!  

Keep your fingers crossed that she won't get pneumonia from this cold...................

Blindsided

We've had some new developments with Emma this week.  We've been worried lately about Emma's nissen and whether or not it was still intact.  Over the last few months, she seems to have been struggling with reflux again and has had some other symptoms that have caused concern.  So, feeling like over-paranoid parents, we scheduled a check up with the doctor that performed her nissen surgery.  Anytime there is concern about a nissen being intact they schedule an upper GI to see what's going on inside.  During the procedure (while we pinned her down) the radiologist was telling me that he didn't think the nissen was still intact.  Shortly after, we met with Dr. Downey, her surgeon.  He was quite surprised by what her film showed and explained that her stomach was "HUGE" as he put it.  So big he couldn't even see her nissen, which is probably why the radiologist thought it wasn't there.  We don't exactly know for sure what is going on yet, but the doctor thinks there is a good chance that this might be a complication of her diabetes called gastroparesis (partial paralysis of the stomache).  He thinks that maybe what we're seeing is in fact reflux, but probably caused by backed up food in her stomache and that the nissen is probably still intact and the reflux is just happening up through her nissen.  He's never personally seen this on a child before, but thinks there is a good chance of it because of all of her other issues she has going on.  There are other possiblities, too.  It looks like there is a good chance she will be having a G-tube put in.  Fortunately it won't be for feeding her, but more of a means to vent her stomache of trapped air.  He put a rush on additional testing which is why we spent the afternoon of Halloween at Primary's.  They did a digestion study which shows if she digests food normally.  They fed her some radioactive egg and then watched it in her belly for an hour to see how quickly it passed.  Supposedly, anything that comes back under 35% is normal.  Hopefully we'll find out soon....

Sleeping Angel

This was a really hard day for Emma.  She had a lot of behavioral problems and some aggressiveness throughout the day.  She was so exhausted at night that she crashed on the floor before we could get her to bed.  

It's moments like this that help us remember how sweet she really is and it keeps us going.

Rough night with sugar control

Unfortunately, this is what we wake up to most mornings. We have had a difficult time controlling Emma's blood sugars at night. When her sugar levels are high, her body tries to flush out the excess sugar by pulling fluids from her body. This causes several problems: risk of dehydration, lots and lots of pee (she's not potty trained yet), and (less important) who likes to change sheets every day?

Total saturation. This is why we purchased a special pee-proof pad.

Fast forward to now

We are still trying to get Emma's blog caught up and include lots of info and pics from the benefit fair.  But until then, we want to keep up with her current stuff.