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

A Milestone Moment for Mantha

I didn’t get a chance to post this yesterday (Friday, February 27, 2009) but it was a really big deal around here. Mantha did 3 pages of her math book *completely independently*!!!! We are currently using Math U See’s Primer level two days a week and Critical Thinking Press’s Mathematical Reasoning Level A two days a week. In Theory we would do Singapore Math Earlybird series 1B on Fridays. We haven’t quite got that one worked in yet. Because of her needs, she really needs multiple approaches to learn concepts, thus the multiple math programs.

First, before the details of the big milestone some background to help explain *why* this such a big deal of us.

Last week Mantha finished up the Beginnings level of Mathematical Reasoning. I’ve had the next level since last June when I picked it up at a home school convention. When I purchased that level, I was very hesitant that she would be able to use it as written as it starts off with tracing numbers. I just planned on skipping the pages that required her to trace numbers.

We’ve been working on her fine motor skills quite a bit. She has a strong desire to learn to write but she did not have the skills do so. Amazing how I took for granted the ability to *TRACE*. So we’ve been using a Kumon workbook called “My First Book of Tracing”. It looks like a book of mazes. Her job is to follow the path from one point to the next without leaving the path. She has enjoyed this book and it has helped her develop the motor skills she needs.

All that work with the tracing book has prepared her to begin tracing letters and numbers that have dashed lines. So we started the new “Purple” workbook this week. Because several of the first pages are learning to write numbers I only scheduled 1 page per day and I scheduled us to also do 1 page of MUS a day. Neither page has very many problems. We did this Monday through Wednesday. On Thursday I was very tired. I chose not to “do school” with Mantha. She however, was determined to do school. She pulled the purple workbook of the shelf and sought help from BooBear. She did one page of tracing 5 and 6 with her sister sitting with her.

So up to this point, Samantha has never truly, truly been independent with her school work. Yes, she done pages with next to no help but always required someone to explain the page to her and to sit near her. Over the last few weeks we’ve been getting a bit more independent. Mom will explain the page, watch her do one to make sure she understands and then get up from the table to do something else (but still be in the area). Mostly this has been with the above mentioned tracing book and with her Building Thinking Skills Primary book also from Critical Thinking Press.

Now yesterday she crossed that most necessary bridge. The bridge that we often take for granted with our typically developing healthy children: the bridge of independence. While I was on the phone, and her sisters were otherwise occupied, Mantha pulled the “purple math book” (that’s her name for it) off the shelf. Found the page where she had left off and proceeded to do 4 pages of math. These pages were different from we had been doing but just looking at them she could figure out what she needed to do. The first page required her to trace the numbers 1 through 5 and then match those numbers to a picture with the correct number of objects. The next three pages had three problems each on them. Each problem had a picture of a certain number of animals or objects and three number choices below. She needed to trace the numbers and then circle the correct the number.

We have been working for such an incredibly long time on number concepts. It is indescribable to be able to see that it finally clicked and to see that her motor skills have gotten to the point that she CAN trace following dashed lines. All that work, combined with her fierce determination to be like her sisters, came together and for the first time she did school work 100% independent.

She was so proud of herself that last night at a church gathering she had to tell *everybody* what she did: “I did it all by myself”

Yes you did sweetheart and Mama and Daddy are so proud of you!!!