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

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!

 

John

Multiple announcements of good news!

Going to change gears here a little bit, and share some wonderful milestones Mantha has achieved this summer.

1)  Mommy is working with her to start reading and writing.  At this point, she is able to read and write three letter words (cat, dog), knows the sounds of all the letters, but not all their names.

2)  She is able to go to the bathroom on her own when we’re out and about (a sister or parent does go with just in case).

3)  She is now wanting to drop the training pants all together.  She had been stuck on the ‘needing them at night’ for quite a while, but we are finally over that.

4)  She is able to swallow small pills (she’s had liquid or compounded medications, and her diuretic is still liquid).  Her one pill (the most recent change which is her anti-seizure med) needs to be cut down to size, but still she’s able to handle the smaller parts.

On the surface, these may seem to be somewhat mundane, but considering the long road we’re on, any movement forward is excellent!

Quote of the Week

Not sure that we’ve done one of these before, but this one was cute, so we’re sharing it:

     The wife and I were discussing a web post where a man described a wrong number phone call.  The person pretended to be the person the young lady on the other end of the line thought he was (not who she was calling for but a father or brother or roommate, it wasn’t specified).  The man went on to say the person the young lady was calling for was out with another young lady, then making it seem like the young man went out with many different women. 

     The discussion moved on to how our fathers would do something like that, deliberately calling the date by the wrong name to get them in trouble, or saying a different young man or woman called while the date was standing there.  We didn’t realize Mantha was listening in.  After my wife said, ‘it’s definitely something my father would have done.’  She came back with ‘Father John, or Father Joseph?’  She thought ‘father’ meant priest.

A quick funny

     I tend to forget many of the funny and interesting things Mantha does, but I really think this one needs to be shared:
     I was home this last weekend with her and two of her sisters. She came and asked me a question (the question really isn’t important at this point – I think it had to do with what we were planning to do the next day).  I looked at her and asked the usual parent question:  why are you asking?  (Now those who know her need to picture this next part)  She puts her fingertips together (like “evil” people do in the movies) and says, “I have plans”.  Do I need to start worrying?

A Wonderful Update

Well, we were kind of worried with the last cardiology appointment.  But the bloodwork is drawn and complete.  The cardiologist called to tell us ‘there is absolutely nothing wrong’.  They were checking for protein and enzymes (kidney and liver function we think).  I believe we are still on the nine month schedule for the next cardiology follow up.

The increase in her diuretic did reduce the puffiness.  So it seems we got things back to equilibrium.  Thanks for all the prayers.

A much over due update

This has been an emotionally draining week.  A dear elderly friend fell asleep in the Lord and we attended his funeral this past Thursday.  

On Friday, Mantha had her routine, follow-up cardiology appointment.  At her last appointment things had looked so stable and so well that Dr. S said “see you in 9 months”  WOW!  Two appointments in a row with a “see ya in 9 months”  I was a bit nervous but Daddy seemed to take it stride.

Cardiac wise the last 9 months haven’t been very remarkable (thank you, Lord!) but we’ve had some seizure issues so she’s not been as stable neurologically as she has been in cardiology.

Back to Friday’s appointment.  or back up a couple of days.  I had noticed that her right foot was more swollen than usual.   Sometimes her face would seem puffy but at other times I couldn’t tell.  She didn’t always have “puffy eyes” which is my indicator that she’s retaining fluid.

Daddy took her to the appointment and he brought up my concerns.   The doctor saw them as well and noted that she had gained 7 lbs since her last appointment.  That’s a LOT for her.    She hasn’t had blood drawn as part of a cardiology checkup in years, but  Dr. S has ordered several labs to make sure we’re not missing anything.  He’s also upped one of her meds.

So we hope that there is nothing serious going on but I’d be lying if I said that I wasn’t worried.  She’s been so stable for so long that just having a whisper of something may be wrong is a painful blow to the gut.

Here’s a picture from April 23rd.   We wanted her to take a nap before heading out to our Pascha (Easter) service at Midnight.   She had been making a Pascha card for her Godmother.     The other picture is also from April 23rd.  She was trying on her Pascha dress.