"Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be." - Shel Silverstein

Friday, March 20, 2009

Busy Week

We have had a very busy week: 4 therapies, 1 dentist, 1 cardiologist, and 1 synagis shot.
Such is the life of a special needs kiddo!

The dentist visit went well. Surprisingly, this is probably the easiest of our many doctor's appointments. Marissa has visited the dentist three times. Each of those times, we have never waited more than a minute and a half in the lobby. They get us right back and into a chair. Then the dentist comes in and examines Marissa's mouth for about 45 seconds, with Marissa screaming her head off the whole time. Then he talks to me for about 5 minutes and Marissa calms down. Bingo Bango DONE!! Incredible!

G-tube fed kids have unique oral chemistry. They are at very low risk for tooth decay because they don't eat anything. Tooth brushing is recommended anyway, but they typically have oral aversion, so that does not always work. Also, because nothing passes through their mouths, they tend to have really bad tartar build up. We try to brush Marissa's teeth with varying degrees of success. Some days she won't let us get in her mouth at all. Some days, she'll let us brush but she constantly gags. Some days she does not have a problem with the toothbrush at all. Because of the sporadic nature of her tooth brushing, I was expecting the dentist to tell us she had massive tartar build up and would need to have it removed under anesthesia. To my delight, he said quite the opposite! He said there was no excess tartar and he just wants to see us back in 6 months!! YAY!!

The cardiology appointment went well also. Marissa was born with a PDA (Patent Ductus Arteriosis). There is a valve in the heart that is supposed to close at birth. Her valve stayed open. The doctors gave her three weeks to see if it would close on its own. It did not, so she had surgery when she was three weeks old to ligate it (put a clamp on it). She also has some other minor heart abnormalities, none of which should ever cause her problems in her life. However, they do need to be checked on periodically to make sure they are not getting bigger or worse. So yesterday, we went to the cardiologist to have an echo cardiogram and an EKG. Marissa did really well through the echo, which is an ultrasound of her heart. The EKG is where they put stickers all over your chest, put clamps with cables on the stickers and take a reading. By the time they were ready to do the EKG, Marissa was done! She threw a major fit. Luckily it is a quick test and as soon as she is still for a second, they take the reading and they are done.

The doctor said that every thing with her heart is status quo. He said he feels comfortable seeing her in a year and a half instead of a year. If she looks good at that point, he will see her two years after that, and so on. YAY again!! She will always need to be followed by cardiology, but the longer between visits, the better!

She got her synagis shot this morning, which is always an ordeal. Synagis is usually reserved for preemies their first year of life to prevent RSV. But airway kids are also susceptible and so most get it as long as they have airway issues. The shot is administered once a month, usually from October through March. Because of insurance dragging their feet this year, Marissa did not start her course until November, so she has one more month to go. Poor girl is big enough that she has to get two shots a month, one in each leg. She gets over it pretty quickly, so that is good.

As far as therapies, Marissa usually has three a week: Physical Therapy and Occupational Therapy on Wednesday, and Speech Therapy on Friday. Last week, this week and next week, Marissa has Speech on Monday as well to make up for sessions she lost when she was sick last month. As it stands right now, we are waiting for speech in about 30 minutes and then we are done for the week! Whew!!!

Lastly, I thought I would share pics of two more very cute outfits that Grandma Utah sent Marissa.

A very rare shot of Marissa with her hair down. Her hair is so fine that if I do not pull it back, it is constantly in her face and she spends the whole day brushing it away. I can not bring myself to cut it yet!
These gaucho style shorts are just too cute!

Future opera singer???


The VW's said...

Look at her expressions! What a doll! What a character!

Glad that her visits went well and that you received good news!

Hope you enjoy your weekend, after this busy week is over! :)

Gripping Mercy and Grace said...

Hey sweet girl! Oh looky you and how cute you are! I can't wait to capture those expressions on film! I am glad to hear that all went well and good news was given! Hope things slow a bit for you! Thinking of you!

Hope said...

She cracks me up! I love how her personality shows in the pictures. She's one stylin' girl with her pretty clothes! I'm glad the appts went well, now maybe you can relax a little this weekend.

Nana and PaPa said...

So glad all went well with appointments this week. Utah Grandma really knows how to find the cute outfits! Marissa...is...ADORABLE in her new clothes!! Love you guys...
Nana & PaPa

John Gensic said...

I know what you mean about the tooth brushing! What a pain! And what cute clothes! I love the last picture!


Michelle said...

She does have the drama to be a future opera singer!!!

Glad to hear all went well with the appointments this week!

Auntie Chelle

Janay said...

Marissa is too cute!!

Must be the week for appointments, we've had a crazy busy week including 3 dr appointments, 2 therapy appt, synagis & he's currently in the cath lab for his heart cath and bronch. Phew...sounds we all need a nice relaxing weekend :0)

Janay & Milo

Ann said...

I'm loving the yellow shirt/gauchos outfit. Marissa sure is a ham for the camera, isn't she! She's one styling little girl.

Finding Normal said...

Your week sounds like mine. Yay for longer between visits with cardio though!
I would like to know where Grandma Utah is shopping--those outfits are sooo cute! Addison really needs a longer top since her torso is so long, and those are just hard to find.

Jessica mommy to Alex/ RTS said...

Sorry just checking in. I love the last picture, she is going to be an opera start!
Way to go getting through so many appointments girl!

Jacque said...

That's what I look forward to with having a little girl now. Playing Dress up!! That is the part Todd is dreading. Very cute little Marissa. Runway, here you come!