Irony in a Wet Definittion

Our family loves Family Feud. We even went to a live taping of the show a month ago. BIG TIME Fun!!

As for watching the show at home, it's our ritual. Every night after dinner we all sit to watch at least part of an episode together. It's one of the few television show that we can all agree on. And seriously, what show actually encourages you to shout at it and still brings families together???

So, last night, Brian, Brielle and I are watching an episode after eating a marvelous (but not at all healthy) new recipe I cooked for stuffed chicken.

The Family Feud question was:  Name something you'd hate to find out you did in your sleep?

What I Expected When I was Expecting

1994 - Pregnant with Ashley

It difficult to remember what I was thinking nearly 20 years ago when I was expecting our first child. However, visions of tiny toes, cute little onsies, and tights with lacy bottoms come to mind.

Sure, I expected sleepless nights of midnight feedings and worries over late night fevers. But, I also expected mornings with Cheerio-filled highchair trays, afternoons playing hide and seek in the park, and evenings snuggled up reading picture books carefully saved from own childhood. I expected  recitals, baseball games and gradautions. I expected pictures of first steps, first communion, prom, weddings and grandchildren.

Then I was told we might expect something very different...

Brielle's Birthday!!

Today is Brielle's birthday!! It's hard to believe she is 17 years old. Where has the time gone?

February 13, 1996

Brielle's story was not a typical child's story. But, she has thrived and maintained her beautiful, joyful spirit. She is child worth knowing!

Brielle's life is so precious. Today is a day (one of many days) to celebrate that life!

 

 

 

 

Happy birthday Brielle!!!

Monday's Making a Difference - What's Up Doc?

I went to a scrapbook retreat this weekend with a bunch of friends. I completed 52 and am totally caught up!

Scrapbook page #1
with some of Brielle's docs

Scrapbook page #2
with some of Brielle's docs

One of the layouts was one about Brielle's doctors. Looking at all of those business cards for her doctors, nurses and dentists (did not even include her therapists), I realized just how many medical professionals are in her life. Well... Actually, she doesn't see some of these docs any more. More specifically, she's down to just her annual visit to her pediatrician, semi-annual dental cleanings and monthly chiropractic visits. Very glad to have all of them providing Brielle with such good care, but even happier to be done with most of them!

Thanks, Docs!

Tuesday's Tiny Triumphs - The Doctors Were Wrong!

Our family
Christmas 1995
(7 1/2 months pregnant with Brielle but before the CMV diagnosis)

A little over 17 years ago (while I was still pregnant with her), doctors told us Brielle had been affected by cytomegalovirus (CMV) prenatally. Although it's a very common virus, it can be devastating to an unborn child. I was heartbroken and overwhelmed when the doctor called me and gave me the grave news that there was a 40% chance Brielle might die at birth due to liver damage.


My notes
 from when I got the call
from the doctors
January 1996

My notes
from when I got the call
from the doctors
January 1996

....But, she was born healthy!

Brielle with Mom and Dad
on the day she was born
February 13, 1996

Brielle using her walker
November 1998

When she was a year old, doctors told us she would probably never walk and we should start working with our insurance company to get her a wheelchair. Just before her third birthday, she started walking with a walker.

...A few months later, she was walking on her own!


Now, at almost 17 years old, she's doing better than any doctor could have predicted when she was younger. She has many struggles, but that beautiful smile is nearly always shining!




Brielle hamming it up for the camera
Christmas morning 2012

Brielle IS a triumph every day!

Spasticity Clinic

Ready for our day!

Once a year (or at least every 18 months) for the last 15+ years, I have had to take Brielle to the Spasticity Clinic (in whatever city we lived in). Spacticity means "increased muscle tone, or stiffness, which leads to uncontrolled, awkward movements". In other words, spasticity is one way to refer to cerebral palsy. At the clinic, doctors and medical professionals from several disciplines meet together to see children all at one appointment.

Hold still for the x-rays!

It feel more like a mauling than a doctor's visit. She sees the:
- nurse
- the physical therapist
- the x-ray technician (to take x-rays of her hips and back)
- the physiatrist (also referred to as rehabilitation physicians and are medical doctors who have completed training in the medical specialty of physical medicine and rehabilitation)
- the orthotist (also referred to as a prosthetist and is a healthcare professional who is specifically educated and trained to manage comprehensive orthotic and/or prosthetic patient care - for fitting Brielle with leg braces)
- the orthopedic surgeon
- the nutritionist (if I ask, we used to need more advice about getting more calories into her diet)
- a social worker (if I ask, last year I consulted one to help with the issues we'll need to face when she turns 18 years old)

Pick a card, any specialist you want.

(Oh, and there's usually at least one resident who tags along to learn)

Our private room for the day!

All of those specialist in the span a few hours is overwhelming. I have to be prepared with questions and concerns I want them to address as well as things to do while we're waiting in between specialists (and believe me, there's PLENTY of waiting time in between).

Brielle and Mom hanging out
in between specialists
(We got lots of school work done!)

Yesterday's appointment went relatively smoothly despite leaving the house at 9am and not getting home until 4pm. At least we got in early. Unfortunately, the rest of the day was rushed. We had only 20 minutes for lunch in between specialists to catch our breath!

Pizza for lunch in the cafeteria.
Yummy! (sort of)

The best news of the day was that Brielle is doing so well that we don't have to go back again unless we have any new concerns. Yay!

Her new meds.
Stylish, eh?

The other good news of the day was information we got from the physiatrist. She gave us several other options to help control Brielle's drooling issues. Despite the Botox injections she received in late October, her drooling is just as bad as ever. We've been so disappointed we haven't been able to do something for her to help the issue. But finally at this appointment, we got a script for a "new" medicine. Actually, we tried this medicine before (several years ago), but only in a MUCH smaller dose. It's a patch that is designed for seasickness but has a side effect of drying out the mouth. She's been wearing one and so far so good! 

Thanks to my friends and family for giving me the love, prayers and support to get through the day. I kinda get a little "wacky" from the stress of the day. But, today was THE LAST time we need to do this!  Woohoo!!

Monday's Making a Difference - CMV Mommies

Everyone needs to belong. There are few places I feel like I belong more than when I am on my CMV Mommies group. It's a closed group on Facebook of moms (and a few dads, grandparents, etc.) that all have a child born affected by cytomegalovirus or CMV  (the virus that affected Brielle) and some that have even lost a child because of CMV. Although I have only met three of them in person, they are all like family to me.

CMV Mommies
Closed Group on Facebook

As the description on Facebook describes:

"The purpose of this group is to give families of children affected by CMV an avenue to share good news; ask for support through hard times; to ask advice from those who have been there before us; share our experiences; make friends; to have a place to go on sleepless nights; and much, much more. We are linked in a way that bonds us. We have our CMV angels to share....but we also have our own health to talk about....and other family members. CMV affects everything in our life...this page is for all of it...the GOOD, the BAD, and the UGLY. I love you all and thanks for for being here for me and my family." 

 

Members from all over the world
and (unfortunately) growing each day

There are over 500 members from all over the world (literally), from all walks of life and have children with all sorts of challenges (some who you'd never know were affected to others who struggle to stay alive each day). But, on CMV Mommies, everyone is welcomed and members can share anything about their lives openly.

Every day, members share triumphs, challenges and questions. Sometimes, there are as many as 20 new posts a day. The members responses to the posts are amazing. Some posts get more than 20 or more members responding with suggestions, encouragement or cheers.

Part of Ashley's college paper
about the CMV Mommies group

When Ashley was working on a paper for her college course in Communication last semester, she interviewed me about my unique experiences in that group and how we communicate. I was so proud to be able to share that with her.

When I get on Facebook each morning, it's the first thing I go to read about what my friends are facing in their day. I find hope and strength through their stories.

Thank you, Ladies! (and Gentlemen!)


--> If you are pregnant or planning to become pregnant, please protect yourself and your unborn child from CMV:

Wash your hands often with soap and water for 15-20 seconds, especially after

• changing diapers
• feeding a young child
• wiping a young child’s nose or drool
• handling children’s toys

Do not share food, drinks, or eating utensils used by young children

Do not put a child’s pacifier in your mouth

Do not share a toothbrush with a young child

Avoid contact with saliva when kissing a child

Clean toys, countertops, and other surfaces that come into contact with children’s urine or saliva

(from http://www.cdc.gov/cmv/index.html)

Hospitals Smell Funny

Brielle's cerebral palsy affected her mouth most of all. That's why she can't talk, has issues chewing food, and can't control her own saliva very well.

She had surgery nine years ago to remove the salivary glands under her tongue (the ones that "fire" all of the time), but that did not help her drooling issue much at all. Usually when doctors perform this surgery, they also cut and cauterize the glands in the hinge of the jaw as well (the ones that "fire" when a person eats). However, with her eating issues, we were afraid her mouth would be too dry, so she only had the other procedure done. In the end, the surgery was not a success and Brielle had to go back on medication to keep her mouth dry.

Although she has been on the medication for years, the drug company stopped manufacturing it two years ago. We tried two other medications, but neither worked half as well. So, she hasn't taken any medication for the last year or so.

We had hoped that the drooling issue might improve as she got older or when she got her braces removed, but it did not get any better.

Although we could have the doctors go back and do the other surgery for the salivary glands in the hinge of her jaw, it's pretty invasive with a much more difficult recovery than even having wisdom teeth removed. Our ENT (Ear, Nose & Throat doctor) suggested we try using Botox injections in those glands to see how they react first. If the Botox works, then we know the other surgery would help and be worth while putting her through the difficult recovery.

After our health insurance company first denied the Botox injections (twice), we finally got it approved. When I told Brielle about the procedure two days ago, she cried for about 10 seconds. She is so fearful of anesthesia, with good reason, since she's been under nearly a dozen times for one thing or another. Then she signed to me, "I big girl. I brave." My heart broke.

Ready for her procedure!

She had the procedure done yesterday and she was such a trooper. She did great through the intake, talking with the doctors and nurses, getting on the gown, and getting on to the gurney. She only panicked when we got to the procedure room. Instead of an empty surgical room, it was a radiology procedure room with lots of big, scary looking equipment and machines (they used ultrasound to guide the needle for the injections). When they wanted her to scoot herself over under the big x-ray machine over the table, she just freaked out. We had to move her over ourselves and she cried and scrambled until they got the mask on her and she drifted off. I just hate seeing her like that.

Doing ok!

In recovery, she did beautifully. Usually she cries hysterically and is nauseous (effects of the anesthesia). But, we had a great anesthesiologist who gave her several medications before and during the procedure to help out with both of those issues. When it was all over, she was still one very sleepy girl, but she managed to give me a sleepy "thumbs up".

Once she was able to drink a little water and get her sea legs back again, we headed home. Brielle slept the entire way.

Still so sleepy!

I really hate having to put her through these things. It truly breaks my heart. But, I am so proud of her!

The doctors said we might be able to see a difference in her drooling on the first day and we did! It was at least 50% better. The full effect won't happen until two to four weeks from now, so we'll know more then. The Botox should last about six to nine months. After that, we'll need to make a decision about the other surgery. We wouldn't put her through Botox again for this, but this will show us if the surgery would be worth it for a long term solution.

(And not to worry, the human mouth has lots of little saliva glands in the tongue, cheeks and roof of the mouth. So, she's got plenty of saliva to use when eating.)

Thanks to everyone who shred their love, good wishes and prayers for us! We'll keep you posted!

Botox isn't just for wrinkles! -- Botox has been around for decades. Cosmetic doctors only began to use Botox for wrinkles in about 2002. Prior to this, Botox was most often used to relieve muscle spasms of one sort or another, including for patients with cerebral palsy. Brielle has had Botox injections three other times for her legs and right arm before she finally had surgery on her right leg five years ago. So, this wasn't our first experience with Botox!

No More Brace Face!

September 2010

May 2012

Brielle got her braces on in September of 2010....

After wearing them for 20 months, she got them off today!!!

Woohoo! Hello beautiful smile!

Something for the Cause

Feeling mighty proud to have our story be featured on the StopCMV.org website!

If we could just stop CMV from infecting more kiddos indeed. That's a nobel endeavor I'm proud to be a part of. :)

http://www.stopcmv.org/en/stories/brielle.html

What's Up Doc?

I set a personal goal this year to write an old-fashioned, hand-written letter or card to a friend or family member each week. I've had overwhelming great responses from people I've written so far.

This week, in our honor of my girls' recent birthdays, I decided to write a letter to the OB/GYN doctor we had when they were born. I thought it would be a fairly short letter, but it ended up being 14 stationary pages long!

I know this doctor has delivered many babies over the years. So, I reminded her of who were were. I hoped from our unique story with Brielle (the chicken pox and CMV), she might remember us. I also included pictures of us taken on the day each child was born and a family picture we took last week.

I thanked her for the care she gave us for both of our pregnancies and deliveries. I told her how we are doing and especially how Brielle is.

I couldn't help but to also give short plea for her to counsel other mothers about the easy measures they can take to help prevent CMV from affecting their own babies.

Although I am not expecting to hear back from this busy OB/GYN, I felt really good about sending a personal letter of thanks and giving her an update.

And the weekly letter writing campaign continues......!