Wednesday, May 9, 2012

12 years and counting

Today marks the 12th anniversary of Mantha’s last open heart surgery.  She had the Completion Fontan at St. Christopher’s Hospital in Philadelphia.  It was the third stage surgery in what has been known as the “Norwood”.

She was  2 years 9 months and 6 days old.  She’d already been through the Stage 1 surgery (as well as the the extra trip to the OR four days later for another Open Heart Surgery due to complications) and the Stage 2 surgery.  She’d been through numerous heart catherizations. She’d even undergone emergency surgery for a vascular repair to her subclavian artery due to complications from a heart cath. 

She could not walk.  She had maybe 5 words in her vocabulary.  She had a few signs.  (All done, go, movie and music are the ones I remember most.)  She didn’t eat much.  And I was working closely with doctors and nutritionists to avoid a feeding tube.   She was tiny.  Her 13  1/2 month old sister more than likely weighed more than her. 

A few months after that surgery we moved from the East Coast to the Mid West (Missouri to be exact).   We worked with the local school district so that we could get some physical therapy, occupational therapy, and speech therapy.  They also provided Special Ed (which was closely linked to Speech therapy).   This was provided in our home because of her diminished immune capacity.

Those were discouraging days.  I was told that she would more than likely never walk.  Not even with a walker because she just wouldn’t have the upper body strength.  I was told she would never talk (remember she only had like 5 words *maybe*.  She was pretty non-verbal and only had a few signs).  I was told she wouldn’t be able to communicate using sign language because she lacked the fine motor skills to control her left hand.  We were told to start using a communication board and be prepared to petition for a computerized version.  

Today she will talk your ear off.  I am actually having to train her to NOT chit chat during Liturgy.  She says phrases like “I just don’t care for that.  It’s not my favorite.”

She can walk.  WITHOUT a walker.  Yes she did use a walker and her gait is not the best.  She struggles with balance but she is independently ambulatory.

And yes I already said she could talk but she can also do some sign language.  Oh none of us are fluent in ASL and sometimes she’s not completely able to hold her hand the exact way but she she has a good sized ASL vocabulary.  In fact introducing sign language was great OT for her! 

But she doesn’t just walk and talk now.  Yes, she has cognitive impairments.  She’s still physically as well as mentally developmentally delayed.  But she’s learning how to read and to write and to do math.  She has lots of gaps in her skills.  She puts far to many a’s in her name.  But there was a time when I was afraid that she would never read.  That she would never write.   She likes school. 

I look back over the last 12 years and I am amazed at what she has done. Glory to God for bring us this far.

I’d love to share a photo from the time of her surgery but I don’t have any digital copies and my scanner needs a driver but I did find this one from nearly 3 years after her surgery.   She was using a walker  and on this particular day she had been awarded the “Young Hero’s Award”    Her developmental pediatrician nominated her and he had hoped she would be walking independently.  Later this very weekend she would indeed walk several steps independent for the very first time!


Here she is from Pascha of this year (so just a couple of weeks ago).   She’s much taller but it’s hard to see.  The most obvious difference is the lack of a walker Smile


Wednesday, February 29, 2012

Just when you thought things were going great


     Yeah, it’s about time for one of these.  We thought Mantha was doing well.  She wasn’t having puffiness, seizures under control, making developmental strides, all seemed to be well.  Then, we had her blood drawn after the family strep throat drama. (She was due for some blood work and the strep throat visit for two sisters was a good excuse, I guess to talk about everything else.)

     Results come back, there are a couple of abnormal levels. Vitamin D?  No problem, we start giving her a supplement for that.  Thyroid?  We’ll see the endocrinologist for that one.  It took a while, but we finally got in today.  Yes, the levels were slightly off.  It’s been a while though, so why don’t we get new tests done?  Certainly.  Probably get the results Friday, right?  Couple of days to convince yourself nothing’s wrong.  Guess again, get a call the same afternoon.  Thyroid is more off than before.  So, now we get to give her a thyroid pill daily.  This is not an unheard of issue when dealing with DiGeorge syndrome, so we’ve really been rather fortunate not to have had to deal with this before now.

     There are many times that we start to live in this ‘fantasy world’ where she’s not as sick as she really is, and things are actually going quite well.  You get complacent, and you don’t remember that you are dealing with a very sick girl every day. 

     After the phone call, I went (mentally) through events of the past few months and wondered if I had missed the warning signs, or something else that would have given me a clue.  It doesn’t seem to matter whether it’s something big or small, you do the same thing.  You tear yourself apart in a self blame when you wouldn’t have known anything was wrong 30 or so years ago, and you only know now because of modern medicine.

     That’s our update.  Just another adjustment in the road.  Another issue to read up on and educate ourselves on.  I thought I was done having to study!