The original reason for this blog

We're coming up on Emma's 5th birthday, which means we're coming up on about five years of blogging.  The blog began and ran for a very long time to record Emma's medical journey.  Over time, as Emma has overcome many health obstacles, the blog has become more "normal" - more documenting our everyday lives and less focusing on Emma's health.  It's hard to believe that almost five years ago, every single day of our lives was 100% focused on keeping Emma healthy, infection-free, and...well...alive.  To this day, we still worry about her all the time.  The difference is that we're not necessarily worried every day about keeping her alive...just well...and giving her the best quality of life possible.  But that's not to say that there aren't problems, and they are constantly changing.

First of all, Emma's scoliosis is holding steady, which doesn't sound like a great thing...but it is.  It has been over a year since her diagnosis.  Think of it this way: her scoliosis was discovered to be very bad when she was only 3 years and 10 months old.  She is now 4 years and 11 months old, and it hasn't changed.  If we were not doing things right, it would have gotten even worse in the last year.  Her brace isn't supposed to fix the scoliosis (that damage has been done); it is only supposed to prevent it from getting worse.  Mission accomplished.  As for fixing what has already been done, that will happen much later in her life after she finishes growing.  Nothing to worry about now because there's already enough going on.

We have been using catheters on Emma for quite a few months now in an effort to get her socially continent and out of diapers.  This requires the use of a medicine three times daily and cathing her every three hours.  It's going well, but we're not quite to the point of getting out of diapers yet.  As far as the poop goes, we're doing well with some new things we're doing.  However, there is an issue we are slowly working through that may require some surgery in the next year, and it is mainly caused by her scoliosis brace.  I won't go into detail in order to protect Emma's privacy in this matter, but we would greatly appreciate some prayers for natural healing and development...there are some things that surgery can't necessarily fix.  We check back in with our WONDERFUL pediatric general surgeon in May, so I might have more info then.

Emma's most recent MRI shows that things are about the same as they were last year after her three megasurgeries in January.  This is good!  This means that (drumroll) we get to see Dr. Troup at the Shriner's Clinic with all the other spina bifida patients and NOT at an individually scheduled office visit.  This has NEVER. HAPPENED.  We don't even have an office visit scheduled.

Emma's ears are strangely sensitive to deep laughter, chuckling laughter, and loud talking and laughter that is enclosed in a loud room.  It's all very strange.  She freaks out and melts down, and we have a hard time distinguishing what she's actually, physically sensitive to and what she has learned to react to emotionally but doesn't actually physically hurt her.  I had her hearing tested by an ENT, and it turned out fine.  He said that many kids just have sensitive ears to certain sounds, pitches, and decibel levels, and they just have to outgrow it.

At therapy, Emma is a CHAMP.  She is making great strides almost weekly.  She is learning to walk with crutches, but this will not be for long distances.  It's mainly for ease of transitioning (eventually).  Let me remind you that she has absolutely no feeling from the knees down, so her version of walking is merely the result of where her feet land based on how she uses her upper legs.  Her quads and hamstrings are not perfect, either, so walking is a challenge.  She doesn't feel where her feet land and has to trust her muscle memory to get her feet to land in the right place.

Emma is also taking water therapy once a week, and it is doing wonders for her.  It has made her core so much stronger, and I think it's helping her keep her weight down.  Weight will always be an issue for her because she can't work off everything that she eats like the rest of us can.  As her weight goes up, so does the difficulty in transitioning and moving in general.

Miscellaneous things - she still wears her little glasses, and her eyesight is not getting worse - hooray!  She still chokes occasionally, and it's often pretty scary.  We have all been trading colds since November, and colds hit her hard.  She has a difficult time dealing with drainage and all that yucky stuff.  This year we have found this little magic potion:

It has made life so much easier for us at home, and it gives me so much more peace of mind when sending her to school.

Emma's school nurse is amazing, and she helps us with whatever we might need pertaining to all these medical issues I just explained.  Emma will go to a different school for kindergarten next year, and I have been told by another spina bifida mom that the nurses there are awesome, too.

As for Reese, she is a mystery.  We think she has a very high tolerance for pain.  She is now on her 4th ear infection, and she doesn't really let us know when she's hurting.  At first, we figured them out for fluky reasons, but now we know what to look out for.  We are now in the midst of the process to get tubes for her ears, which I am barely even acknowledging as a medical procedure.  Tubes schmubes.  After what we've been through with Emma, I practically feel like I could put Reese's tubes in myself.  Here are a couple pictures of what she looks like in the middle of "bulging" (not my word) ear infections:

Tragic, right?