Clarity's Story

This is what it's all about...

Show your kids....

Take a moment to just take it in....

Thanks, Kris

http://www.youtube.com/watch?v=nwAYpLVyeFU

As visions of sugarplums danced in their heads....

 

Busted!

Ahhhh....Heaven!

Clarity's Echo Cardio Gram

Pat, Clarity and I spent most of the day at Packard yesterday. Clarity had two appointments. 

The first was a scheduled echo cardio gram of her heart. She was actually discharged from cardiology when she was around four years old. Since then, we've really just assumed her little ticker was functioning just fine. Truthfully, I was feeling a bit uneasy about the fact that she had had heart surgery at the age of 3 and 1/2 (her vascular ring deviated) then, a few months later, they discharged her from cardio giving her a clean bill of health.

So, when Clarity's pulmonologist, Dr. Conrad, asked if we had had her heart checked lately, I was actually relieved to have someone look at her heart more closely.

Dr. Conrad felt as though she had heard a bit of "sticking" in one of her arteries when it opened and closed. She recommended a echo cardio gram based on the unusual sound. She also thought it would be a good idea to have cardio continue to follow her.

Unfortunately, Clarity based this news on the memory of her last hospital stay and was beside herself. To ease her stress, we checked out YouTube videos of echos and even dug out old photos of me getting an ultrasound while prego with her.

As many of you know, Clarity is developing quite a sense of humor. Now, her on going joke is this:

She is totally phobic about something such as the blood pressure cuff or echos, for example....Then, after she has kicked and screamed through most of the procedure (and discovered that it was painless) she'll look at us with that crooked, little grin and sign, "That was my favorite!"

Here she is doing one of her very "favorite" things... :)

Oh, and we still haven't gotten the results back...TBC

The Big Countdown

Notice the details on Clarity's personal calendar. Can't you just feel the anticipation and excitement as Christmas nears?

Wishing everyone joy, love and peace

this holiday season.

Some fun stuff we've done this month

http://www.youtube.com/watch?v=-HV74qNQR0Y

This was great. Check out this video of me telling the kids that we were on our way to do the horse drawn carriages in downtown LG for their first time.

The highlight for us was having Daddy join us. 

Off to The Nutcracker with Madi and Sadie. The Nutcracker ballet has always been a favorite of Clarity's. Once she could get past the the notion that the mice were probably kids in costume she calmed a bit and had an memorable evening. Such wonderful friends....

Makin' gifts with her Girl Scout pals.

Not the perfect shot, but I just love it...It's totally them....

Making candles with William and Gabriella. Their mom, Alexa, is one of my very oldest childhood friends. Loving spending time together....

Imitating Mama doing the typical hoilday multitasking.

A Little Refresher Course

-Clarity's Anatomy 101-

I've been asked quite a few times over the last couple of months, exactly what the latest was with Clarity's health. Well, actually there are many ways to look at the answer to that question. A few people have also wanted to know if any of her issues are degenerative. I figured that the best way to answer these questions and update everyone would be to just do it one body part at a time. You'll have to bare with me though, for I'll probably need to post this in segments. This cutie pie is quite complicated.

What the hay! Let's just go head to toe...

EYES: We visit the ophthalmologist every 6 months. One time a year, Clarity has to have her eyes dilated. The reason for these visits is two fold. Because Clarity has arthritis, she is more at risk for inflammation of the eye. The second reason for the regular ophthalmology visits is because Clarity actually sleeps with her left eye partially open.

Clarity's body is asymmetrical in many ways and the the left side seems to be more affected than the right. I put ointment in her eye every night so it doesn't dry out. The vision in her left eye is not as strong as it is in the right, and there is a strong chance that she will need glasses in the future. 

EARS: Clarity wears a BAHA (bone conduction) hearing aid. The hearing aid actually vibrates sounds into her skull. Because it is placed behind her left ear, the sound is most concentrated in her left ear. Clarity has moderate hearing loss in the right ear and severe in the left. This is due to her microtia  (birth deformity of the outer ear) and atresia (underdeveloped ear canals and/or middle ear structures). Fortunately, Clarity CAN actually hear without the use of her BAHA. It's just when her BAHA is off, she isn't able to localize sounds as well. If, for example, I call her from another room and her aid is off, she can't specifically hear which room my voice is coming from. Without her aid, she cannot hear sounds like the rustling of leaves in the trees, airplanes far away….sounds such as "F", "S", "SH" and "CH".

There are two surgeries that could possibly help her hearing and reconstruct her ear. But after quite a bit of research, we just don't think that they are perfected yet. There is still a very high risk that her hearing could worsen post op. Pat and I feel as though once her malformed ear starts to actually bother her, we'll look further into the reconstruction. Happily, none of her peers have teased her (as far as we know) about her "little fin" so, for now, we'll wait until the time is right to operate.

We can also elect to have her BAHA implanted into her skull. She would then lose the actual band that holds it onto her head. Yes, it sounds very space-age and well, it kind of is… We may do this during one of her growing rod lengthenings since she'll already be anesthetized. Which brings me to….

BACK: Clarity has healed up from her scoliosis surgery remarkably well. She will go back to Packard to have the rods lengthened sometime around March. She is thrilled to be able to climb on the play structure at school again come Feb.

 

VOCAL CHORDS: Ahhhhh those infamous vocal chords. Are they there? Do they function? Nobody knows, really. If you look at the bronchoscopy photos, you can see them, but they are pretty scared up. Now, the true test would be to run air over them to see if they can vibrate. The only way to do this is to actually take her trach out, plug the stoma and encourage her to funnel air from her lungs and out of her mouth. Now that Clarity isn't as "tripped out" by having her trach out for a few minutes, we have encouraged her to try. Each time we change her trach, we keep it out for 10-15 minutes. She now feels more comfortable touching the open stoma and will try plugging it gently. Obviously, she too, wants to make some sound come out of that little mouth. We rejoice in the small steps and the faint "cack" noise that we can occasionally hear out of her mouth. By no means is this voice, but it IS air.

The big elephant in the room is this: Even if Clarity WAS able to make voice out of her mouth by plugging the stoma, we'd still have to keep her trach in because the balloon or cuff  on her trach creates a barrier thus blocking the saliva and food from running  down into her lungs. You can actually see it trickling down when you look into her stoma. It's absolutely fascinating.

I'm just in awe of the human body and love every one of Clarity's extra little holes. So, there you have it....a voice update. In the meantime, we will continue to cherish her other perfect voices, that being her clicks/clacks and those wonderful hands.

 

Stay tuned for our second Clarity's Anatomy 101 course later in the week. In the meantime, you can look forward to learning more about her airway, lungs, recent cardio issues and feeding.

 

 

"Each place along the way is somewhere you had to be in order to be here."

                                                                       Dr. Wayne W. Dyer

There's a Reader in the House!!

 

http://www.youtube.com/watch?v=EESoBqn3KlI

Check it out (above) 

I have to say, I am just so darn proud of this girl. She has worked so, SO hard to get to this point in her reading.  Clarity has never been the type of kid to just pick up a book, even just a picture book, and dive in. It has always been a push to try to get her to read. I really think the light bulb has finally turned on though. To see her words and signs begin to flow together as they do in this video....gosh...it's actually hard to find the words to explain it. We are elated!!