4th Birthday Photo Session

4th Birthday Photo Session

Wednesday, August 30, 2017

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!

Saturday, August 19, 2017

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.  

Sunday, August 13, 2017

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! 

Friday, August 4, 2017

CHARGING Into 2nd Grade

While summer has passed in the flash of one thunderstorm after another, I think we only made it to the pool for five or six swimming lessons, and one family visit.  Disappointed to say the least, as that is one of our favorite summer-time activities.  Another disappointment, is that we finally invested the money in outdoor furniture for our deck - and the cushions have spent half of their summer inside staying out of the rain.  Ridiculous, but true.  So, here it is now August, and I'm saying summer is over.  I suppose that is the line of ridiculousness.  August is knee-deep summer, but here in Georgia, Andi Bean returns to school next Monday, August 7th.  Recently, I heard they do this because it is the hottest time of the year, and to help the kids who benefit from the school lunch program.  Some kids, outside of school, don't have much to eat, let alone air conditioned homes.  So, the teachers and administration fire up the margarita machine in the teacher's lounge and head back to it -- educating our children, keeping them safe and trying to stay sane while doing such a magnificent task.

So, here's Andi, finishing up her last day of summer camp -- all-day daycare where they actually did learning activities around a theme each week.  It was expensive, but, money well-spent.  But, I will enjoy the return of an additional $500. to my checkbook each month now that she's going back to school.  Today, I met her homeroom and her DHH (deaf/hard-of-hearing) teachers.  One is on the 2nd floor and the other is on the 3rd floor.  I have to admit, walking up all those steps had me seriously winded, so much like Andi will be returning to school, I will be returning to the gym!  Geesh! Both teachers seemed wonderful and well prepared for the lil' firecracker that Andi can be.  Although sweet, she can also be a little spicy, a little saucy, and test you to the point of indigestion.  She's incredibly sharp, and they have been warned.  At least this year I didn't walk out of the meet & greet with a dry, 'see ya later, suckas!' that I usually tend to drop.  Later being the several teacher/admin. meetings I'd have to attend because my kid was being a PITA.  Yes Poppa & Ginga, Grandma & Grandpa, you're little angel was sometimes a terror last year.  But, that teacher is gone, c'est la vie! and this year, they're older, wiser and ready for the challenge!  YIPPIE.  So, bring on 2nd grade.  This year, I promise to be more involved, more on-top of the demands, and riding her lil' ass like Seabiscuit to make sure she succeeds.  Ah, the glory of school-aged kids... 

So, bring on 2nd grade.  She might not have swam to her heart's content this summer, but, it's time to get back to work.  I'm ready, and I'll make sure she is too.

On a whole different page, we recently returned from the 13th Annual International CHARGE Syndrome Conference, which was held in Orlando, Florida.  This 3 day fun-fest is a family reunion of your 1200 closest relatives -- whom are only related by experience with CHARGE Syndrome.  It's overwhelming with people, information, camps, sights & sounds.  Although fun, it's exhausting. I came back more worn down than ever, but reCHARGED to fundraise for the CHARGE Syndrome Foundation.  The CHARGE Syndrome Foundation helps supports education efforts, grants, and families of individuals with CHARGE Syndrome by something as meaningful as helping them get to conference.  The out-of-pocket expenses for someone attending conference is quite extensive. The hotel, the transportation to/fro, the food not covered by conference, the bar bill... it is quite a lot for most families whom are already taxed to the neck with medical bills, insurance deductibles, doctor's appointments, medical procedures or surgeries, some families are simply unable to make it due to cost.  And it's not like this conference is a money-making operation.  Actually, the foundation loses money by hosting this event, as the registration fees simply don't match what it takes to host such a large conference, and without families attending, what's the point!?!  So, I'm hoping to fundraise a lot on behalf of Andi Bean so we can help the next group of families in 2019 attend our next conference in Dallas, TX.  So, if you're able, please reach deep into your pocket and donate anything you can. Any and all will help us!  Feel free to share this fundraiser with your friends and family.  Educate the masses on behalf of Andi Bean and let's help future families!!!
Thank you!

Saturday, July 15, 2017

Puke-Induced PTSD!

Yesterday, Andi had her yearly check-up appointment with her ENT.  Less than two weeks prior, we ended up taking her to the "Doc-In-The-Box" (urgent care) in Montgomery, Alabama because her ear was draining and bleeding.  She was diagnosed with a very inflamed ear-infection and put on antibiotics and special ear drops that we happened to be out of (part of our ENT appointment was to acquire more).  Plus, it was a yearly check-up and they were to do hearing testing -- saving us a trip to the audiologist -- a whole separate appointment.  Reducing the amount of appointments, given the variety of specialists that follow Andi, #winning!  Definite no brainer, sign us up.

So, just before 6 a.m. yesterday, I instantly awoke to the sound of her throwing up in her bed, thanks to the baby monitor.  It's those parental ears I acquired at delivery, and explain why I'm chronically exhausted.  I never sleep all that deeply, because I'm the one that is always listening.  Listening to hear what I heard yesterday morning, Andi enduring stomach reflux while laying down.  See, one of the major fears is aspiration.  Kids, especially when really young, can throw up and then inhale it.  It can give them lung issues such as pneumonia, or worst case, it can kill them.  This fear was drilled into my brain when Andi was an infant in the NICU, and still drives me to sleep lightly.  I hopped out of bed to get her out of her room and into the bathroom.  I let her sit on the couch for quite awhile with her iPad, then gave her a bath, let her rest some more, and then we headed out for our appointment. She admitted she still didn't feel good, but we agreed we'd just go to the appointment, and then she could spend the rest of the day on the couch with her iPad and rest her angry belly. We were just a 1/2 mile away from the ENT's office when she started throwing up again.  Strapped into her car seat, me driving down a very busy road.  I started yelling for her to just "spit it out" -- the contents not being food, but saliva & mucous.  Not trying to be graphic or gross, but that's how you know it's reflux.  So, here I am driving down a busy street, a half of a mile away, our appointment in less than eight minutes... and Andi's throwing up all over her pretty dress.  Retching to purge the anger from her tummy.  I frantically pulled into a not-yet-open Toyota dealership, jumped out of the front and got into the back with her.  I grabbed an old hand-me-down baby blanket that I keep in the back of the truck and wiped her mouth, covered her dress, and helped her as her stomach revolted.  

I honestly was transported back to the days of the G-Tube(s) and the puke-fest's we used to endure.  It made me feel upset, angry and uneasy, all over again.  I looked at Andi like I did when she was only one year old, and this used to happen.  But this time, I was anxious because I was totally unprepared for this.  It'd been so long since we've had such a stomach revolt while we were out and about.  I did not have a change of clothes.  I had nothing to wipe her down with.  I just left her covered in the blanket, turned the car around and tried to call the ENT office.  By the time I was half way home, I was finally able to reach someone to let them know what had happened, and we rescheduled for later that morning.  

We returned home where Andi promptly got her 2nd bath of the day.  I added her carseat cover, dress and blanket to the next load of laundry.  She returned to relaxing on the couch with her iPad.  By 10:30, we loaded up again and headed back out to the ENT appt.  The drive was rather uneventful this time.  Andi admitted she still didn't feel well, but said she was okay to get through it.  We got to the office building, walked up - although she wanted me to carry her, and signed in at the front counter.  The waiting area was full, and full of adults.  Andi was the only kid there.  She sat next to me and wanted to cuddle up to me -- a sign.  She was lethargic, grumpy, and definitely not her usual socialite self.  

While we were waiting, and Andi was clinging to my arm, the Mom-dar (Mom-radar) tickled the senses and I looked over to see her start to spit up some saliva.  I jumped up and said, 'Oh no! Hold on!  Let's go outside!'  It was quite a disruption to the zen-like office waiting area.  I grabbed my 40-lb purse and I carried her out the door.  I grabbed some tissues, and we followed an observant Fed Ex man out the door.  She started retching into the pine straw flanking the front door.  He stopped to ask, "is there anything I can do to help?"  I excused him with, 'no, thank you.  It's just reflux!' and continued, 'get it out Andi!'  It was just one of those Mom moments that might embarrass some people, but I don't give a rip.  I care about her well-being and everyone else can suck it.  So, she finishes the bout with reflux.  I tell her to sit down and run inside to get a few more tissues to help wipe her mouth.  *side note to self... pack more tissues in your 40-lb purse!*  I ran back outside and cleaned her up.  Despite being right outside the door, I tried to call the ENT office but got voicemail.  So, I picked her up and carried her back inside the ENT office.  She was exhausted, weak, and sore.  When the lady got off the phone, I was able to tell her that Andi just got sick with reflux again outside and that we weren't able to keep our revised appointment after all.  I think I apologized about 30 times and she apologized back to us about 15 times. It was another reminder of how life used to be... unsettled, frantic and unwell.  It's funny how little things can take me right back to those days where things were hard.  Things were scary. Times where we were still in the discovery stages of what Andi faced.  

Needless to say, I do not miss the overabundance of laundry that the leaky g-tube/formula-fed pukefest days caused.  It was a reminder of how things used to be.  Which in turn, reminds us of how far we've come.

Today, Andi's stomach is better.  Her 'summer camp' (day care) has been notified after five of these days this summer, that her stomach does not process tomato sauce well.  So her lunch of ravioli's that was likely doused in a tomato sauce, caused this issue.  They have noted it and will make adjustments for future italian meals... hooray!  Regardless, what other girl do you know that can feel like absolute hell and still rock a supermodel look?!

Friday, June 16, 2017

The Power Of Andi Bean: Recruiting Blood Donors

This morning while we were getting her ready for "summer camp" -- a glorified title for daycare that enables them to charge more money... Andi was pulling at her shirt and showcasing her heart surgery scar.  She said, "I had surgery!"  I replied, 'Yes, you've actually had nine surgeries!"  I pointed to her nose and said, "you've had many surgeries on your nose!"  (choanal atresia)  We haven't really talked about CHARGE Syndrome yet, nor how she might be perceived as different in any way.  It's more like, 'yep, I've had some help and dang it... I'm a bad ass!'  I want to equip her with the ability to stave off any negativity, and turn all into a teaching opportunity.  Most people don't get it unless they live it, that applied to me too!  Therefore, a few weeks back, I inquired at work why we don't do blood drives at our office.  Apparently, there's upward of 600 people in our building, if they all showed up on the same day.  With that being said, we now have a blood drive that I'm coordinating.  In effort to implore people to give the gift of life, I'm using Andi and her heart surgery story to show how donating blood can save lives.  So, her face will soon be all over our building.  I'm excited by it and a little anxious too.  I am debating bringing her to greet donors outside the vampire truck.  I think that might be fun to have her sing her songs, dance her lil' whip & ney ney, and relax people in Andi's unique way?!  Hey, if it helps get donors in the recliners and more pint donations... I'm all for it.

So, here we are using our experience to help others.  THAT is what I hope Andi will do.  Educate others and make people kinder, gentler and wiser.  The power of Andi Bean.

Monday, June 5, 2017

Andi Meets Ralph

Our first morning in New York, the family got together and had breakfast.  It was four or five tables pulled together.  We all chatted up a storm, with conversation just flowin', laughter and stories envelope us all.  Then there's Andi.  Andi has a tendency to go from person to person and ask a variety of questions.  This morning, it was 'what did you have for breakfast?' and 'who did you sleep with?'  I mean, we all were giggling.  Andi canvasses the room and asks each person at our table.  Here were are a month out from that trip, and I would honestly bet money that she can still tell you what all these people ate that Saturday morning.  When Andi asked Uncle Pete what he had for breakfast, he told her about his meal, and then she asked him, "who did you sleep with?"  While most of us would expect him to identify his wife during this inquisition, he simply said, "Ralph!"  I believe she asked, "Who's Ralph?" and so the story goes.

Thank you SO much Uncle Pete!  What a gem for Andi to have, and so sweet of you to send!  When she was done opening it, Cory looked at me and said, "that's something your Mom would have done."  Simply wonderful!  Thank you!!!!  We love you!