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.