Charlie's medical saga

He is such a sweet smiler.

I thought now would be a good time to write down an update about all of Charlie's health things as a lot of people have asked me about it lately.  I'll try to keep it as brief as possible, but it is all a bit confusing.

At Charlie's two month doctor's visit, his pediatrician noticed he was breathing very rapidly and noisily.  I had noticed this too, but not really thought anything of it.  She referred us to several specialists, who ordered several tests.  And since then, there have been more specialists, more tests, and few answers.  Here is a list of the specialists he's seen:

Ear/Nose/Throat

Cardiologist

Pulmonologist (lung doctor)

Geneticist

Opthomologist

He's a list of tests he's had done:

2 echocardiograms

skeletal survey (x-rays of his entire body)

2 blood tests to rule out genetic disorders (with a third on the horizon)

This is all we know at the moment:

The pulmonologist suspects that there is some sort of narrowing in his trachea which causes him to have trouble breathing.  The next step is to figure out 1. if the narrowing is dramatic enough to warrant surgery 2. if his trachea just grew in a narrow way or if there is something else squeezing it (his aorta, for instance).  In order to figure those two things out, Charlie will have a chest CT angiogram (scheduled for Oct 11), and a larynscopy/bronchoscopy (basically a camera down his throat) (November 8).  Both of these require him to be put under general anesthesia.  I really resisted any test requiring him to be put under, until a gentle, understanding and very Greek doctor convinced me that it was necessary.  In the meantime, he is supposed to be on a nebulizer, but the medical supply company and our insurance company can't seem to get their business together so I've spent many hours over the past couple of weeks trying to get them to work it out.  Thankfully, Charlie seems to be doing okay without it.  

We don't know if this is at all related to him being born a month early, but my understanding is probably not.  

Fun fact: the average human has 12 sets of ribs.  Charlie has 13 (which we found out through the x-ray).  Apparently this is sometimes a characteristic of Down's Syndrome, but Charlie does not have Down's, so it is just a little quirk.

I think that is pretty much all I know.  It's been an exhausting and stressful time, but we've been overall happy with the care from all the doctors at the children's hospital.  Lucy has been to more doctors waiting rooms than she bargained for, but I am finally understand that each appointment is probably going to take twice as long as I think it's going to, so I need to find someone to help out or watch her.  Please keep Charlie in your prayers, especially with these two tests coming up.  I'll try to keep you all updated, but feel free to ask me questions (it's been kind of a whirlwind and I may have left something out).  

Getting into the swing of things...

I couldn't really figure out to title this post.  Usually there is some kind of event or something that prompts me to post, but this time it's just "I've taken enough pictures and it's been a decent amount of time."  And then I realized that all of these pictures are from what our daily life is slowly becoming as the school year trucks along and summer turns to fall.

This is Lucy's new funny face.  She thinks it's hysterical.

 

James has to study a lot lately.  This makes Lucy sad.  He goes into the other room, and sometimes she will just lay on the floor outside the door for 20 minutes or so.  This time she brought a snack.

Sweet Charlie.  His medical saga continues.  I'll write another post about that.

Just a couple of bums.

The other day, Charlie was having tummy time on the floor.  Lucy, the most affectionate sister that ever was, saw him on the floor and brought her coloring over so that she could color next to him.

I am really glad that we made a recent trip to the library because we've been spending a lot of time indoors lately.  I was sick for about a week, and just yesterday Lucy caught it.  A lot of miserable coughing, and not sleeping very well.

Lucy gave me an early birthday present the other day and let me put her hair up in a ponytail for the very first time.  I bribed her with going to the park, and sure enough, it stayed in until the minute we came back from the park.  Here are some pictures of Lucy checking herself out in the mirror. 

One story I meant to write down: the other day Lucy was playing with blocks.  She made two towers right next to each other and exclaimed, "the Ten Commandments!"  I had a good laugh about that, and then tried to figure out what she was thinking of because we've never really talked about the Ten Commandments.  I realized later that it's in a children's Bible that she has.  I'm always amazed at the connections she makes.

Charlie rolled over the other day, but no body saw it and he has not done it again since.   Lucy was with me, so I know she didn't push him over.  Another Charlie funny: every day at 7am Charlie fusses and wriggles around until I get up with him.  He's not hungry, he doesn't need to be changed or burped, he just wants to be talked to and very much done with sleeping.  Well, this morning, on my birthday, Charlie was apparently just way too excited to sing me "Happy Birthday."  He did his usual 7am wriggling and fussing at 4am, and only went back to sleep when Lucy woke up.  It's kind of been a comedy of errors birthday for me this year: Lucy is sick and not sleeping (thus, neither am I), and then this afternoon, a minor plumbing issue became a major one after a plumber came to "fix" it.  Our upstairs landlord flushed the toilet this afternoon and water came gushing out behind our washer/dryer (luckily there is a floor drain nearby).  Oh my!  We are hoping to sit down and have a good laugh over all of it tonight with take-out, cookies and ice cream.