Moana: Make Way, Make Way -- Halloween 2017

Rock Star Andi: Fall Talent Show 2017

We've always known that Andi was unlike any other kid.  I mean, I don't know many kids that will get up in front of a room full of people and sing & dance upon command.  She does it with vigor and dazzles those whom have the pleasure of watching her perform.  The fall talent show at her school was no exception. She just seemingly took the stage without fear, and gave it a rock star effort.  I thought she stole the show, but I might be a little biased.

Blood Drive Poster Child

Andi was thrust into the spotlight as the poster child for a blood drive I coordinated at work.  I made a few different posters, told a brief glimpse of part of her story, and then paraded her around the blood mobile to sing, dance and entertain the variety of donors.  She was thrilled to come to the office and meet everyone.  Every day I pick her up from after-school care, she always begs, 'who did you work with today?'  I'll rattle off a slew of names and she remembers them.  If I don't mention them on that particular day, she'll ask, 'well, what about 'so & so'?!?'  It's pretty adorable.  So, being able to take her and show her where I run off to while she's at work, at daycare, or therapy, was pretty cool.  Getting to introduce my world outside the office to the office, was priceless.  Our communications team brought in a professional photographer to shoot pictures of our drive, but it was likely because the division controller was going to donate a pint.  However, our little supermodel Andi stole the show, and then some. 

Here are some photos from our adventure:

Signing autographs at 7.

She now asks about all the people she met, and has a running  itemization of all the people on the floor whom she hasn't yet met.  

We discussed why I made her the poster child of the blood drive, because when she had heart surgery, she required several pints.  Therefore, by telling her story, we would inspire others to donate to benefit others.  It worked!  The Red Cross asked for diversity, to which we delivered... however, they had to defer seven of our donors because of their international background and years spent in foreign countries.  That was disappointing.  But, we collected 18 pints, enough to potentially help 54 people.  

Out little poster child dazzled the masses though.  It was awesome!

ENDOCRINOLOGY: The Growth Doctor

The other day, we hit up CHOA (Children's Healthcare of Atlanta) for Andi's yearly endocrinology appointment.  As 'restriction of growth' is a part of CHARGE Syndrome, Andi is followed by endo.  In the past, these appointments haven't produced anything of any value, but she's definitely short compared to her peers, and as such, we want to make sure we're doing everything we can and should be doing.  I made the appointment several months prior, completely unaware that she'd already be back in school.  Also, the location choices were slim and slimmer.  I took the Egleston location, which is near Emory University.  East of downtown, it is not convenient at all.  9:50 a.m. appointment, we were going to hit traffic.  Therefore, our thought was, 'let's leave early so we aren't rushing.  Plus, if we get there early, perhaps we can be seen early.'  So, we left about 7:15 or 7:30 and arrived at 8:30 a.m.  We walked right to the place we were supposed to be, and we checked in on an iPad.  Then we sat and waited.  And waited.  And waited some more.  By 10:05 a.m., I approached the desk and asked how much longer we would have to wait.  A few minutes later, we were seen by the nurse.  She took measurements (height, weight) and vitals.  She said that they didn't have a room available yet, so we needed to go out and wait in the lobby some more.  We returned to the lobby and sat there for another 20 - 30 minutes, until we were finally ushered into a room.  We were seen by another nurse whom input more information and our desired outcome into the computer.  After awhile, the Dr. arrived.  She introduced herself, apologized for the lateness, said she understood that we saw her colleague in Marietta last year.  Then she proceeded to ask why we were there.  After awaiting in their lobby for this appointment for a good two hours, I was taken-back by this and must have had a puzzled look on my face for a good full minute.  Then, I did my yearly schpeel.  Andi has CHARGE Syndrome, and as such, a part of CHARGE is slow growth.  That our concern is to make sure we're doing everything we should be doing for Andi.  I mentioned that some families are administering HGH, and wondered if we should be doing that.  I mentioned that we just returned from CHARGE conference, and yet again, I learned that we should have a bone density scan and a bone age scan.  She said that CHOA has a bone Dr. whom specializes just in bones, so that she could consult her.  I also said that I was trying to get better about giving her calcium supplements as kids with CHARGE typically should be given more than most. She looked at Andi's plots on their growth chart and said that Andi is keeping up with her growth curve.  She said that the desired is 5cm per year and she was right under 5.  So, that alleviated a lot in my mind.  She excused herself to consult with the attending, and ended up bringing him in for a deeper discussion.  He asked point blank, 'what's your goal?'  I said that as Andi is a girl, I didn't mind her being smaller.  Again, I reiterated, I just want to make sure we're doing everything we should be doing.  We talked more about HGH and gathered that we didn't want to give it to her, unless it was needed or recommended. We talked about the referral to the bone Dr. and I let him know that at the CHARGE conference (our first one which was in Scottsdale, Arizona) I sat in on an Endocrinology session with a Dr. whom is pretty much the voice of endo for CHARGE Syndrome.  I said he said that we should not only have a bone density scan (which we have yet to do), a bone age scan (which we have yet to do), and that he recommended that kids with CHARGE have double the amount of calcium supplements of typical children due to the prevalence of scoliosis and osteoporosis.  The younger Dr. googled the CHARGE Foundation site and found Dr. Jeremy Kirk's name.  The attending nodded and thanked me for educating them.  We basically concluded that Andi is growing at her growth curve, her HGH level was normal last year, but they would confer with the bone specialist and be in touch if she felt we should move forward with those tests.  The attending was talking to Andi when he paid me the best compliment (...snickering: that I've heard a few times!...)  He said, 'Andi, you're a lucky girl to have a Mom that knows her stuff.'  I did not however, leave with a trophy... but, I digress.

I was grateful to have them finally hear me, since previous appointments seemed to be a complete waste of time.  With CHARGE Syndrome, you don't just see a pediatrician.  Oh no, that's just not enough.  There's the cardiologist, the audiologist, the ENT, the eye Dr., therapists galore, and more depending on the child's needs.  It's a lot... and I know I'm missing listing a few.  So, a few days went by and I received a call from the endocrinologist, stating that she spoke with the bone specialist and she definitely wants to schedule Andi for a bone age, bone density, blood work, and an ultrasound of her kidney's to make sure all that calcium isn't forming kidney stones.  (I've slacked a lot on Andi's vitamins, so I do not have any concerns of this...)  We are booked for next Friday afternoon.  Very excited to finally have these scans done, so we at least have the data to add to next year's appointment.  

2nd Grade: enVISION It!

This week, Andi started 2nd grade.  She spends 2/3 of her day with the big class, two subjects with her deaf/hard-of-hearing class, and then gets pulled out for "specials" or therapy services. Her big class is on the 2nd floor, whereas the D/HH class is on the third floor.  So, needless to say, Andi will be climbing and descending a lot of stairs this year, which honestly makes me nervous for accidents.  Kids rush, someone could bump her and if the attendant is focusing on another kid, she could take a really bad fall.  Her school is very protective and aware of her balance issues, but, the fear still tickles the noggin from time to time.

Sadly, Andi's second day of 2nd grade was spent at home with a stomach ache.  Dinner the night before did not agree with her stomach.  I can't help wonder if some of that stomach ache was caused by the excitement and anxiety caused by first day jitters?  It probably didn't help that her appetizer was a piece of rich chocolate cake to celebrate the new school year.  Regardless, her sour stomach finally relented and after a good night's sleep, she was ready to tackle school again.  

Wednesday afternoon, I picked her up from school and took her to her yearly eye exam.  When I scheduled the appointment months ago, I failed to realize that she would already be back in school.  So, Andi met with the Opthamologist, and her daughter whom has recently joined the practice.  Andi asked if she was going to watch a movie on their wall TV.  The Dr. was sort of taken back at this request, when I interjected, 'actually, she remembers watching a movie last year.'  The daughter started flipping through the options, and I interjected, 'Duck! We watched the movie about the ducks last year!'  Through testing, it was clear that Andi's left eye isn't seeing as well as her right eye.  It was pretty funny that she was supposed to cover the right eye and read the letters on the screen, and with her left eye doing all the work, she continued to drop the right eye cover and try to read the board with both eyes.  Through testing, it was determined that Andi needs glasses now.  Her right eye is fine, but her left eye is farsighted.  Her 'script is +1.75 on that eye.  I was pretty upset that she already needed glasses.  I was hoping that was years off.  We went out front and picked out some glasses that would work for Andi's small nose and not compete too much with her hearing aid on her small ear.  I posted the picture of her trying on the glasses we chose, and the feedback was so complimentary.  But, I honestly cried the whole way home.  I know I should celebrate that she has such good vision, but, the a-hole within is just sad - as her vision has always been one thing that was never an issue, until now. So, I mourn the fact that we'll have to cover up those gorgeous blue eyes, yet celebrate that this improved vision will likely help her with school, with walking, and help protect her right eye from strain and her left eye from deteriorating further.  So, it will be a good thing - it just sucks.

So, week one of 2nd grade was a doozy!  Week two starts with a trip to the endocrinologist!