Andi Bean Turns 12!
...wait, what?!? When did THAT happen?
Life is just going by quickly. It seems quicker and quicker when you have someone like Andi to measure time against. Seems like just yesterday we were juggling therapy sessions and medical bills.
Andi just graduated 6th grade. Cruising through middle school. She spent the year as a cheerleader and absolutely loved it. Her personality shines, most often being deemed by followers as 'sassy!'
The tradition started long ago was to create a video to showcase Andi's year in a Birthday video. The first one was created to celebrate her turning three, and every year subsequently. This year's video is a little late because I was in Germany for two weeks working on my big annual event that was rescheduled to conflict with birthday #12. Therefore, while her Dad and step Mom took her to Disney World, I promised to keep the video unveiled until she saw it when I got home. Today is the day, having landed just last night. And so... without further adieu, I offer up 'Andi Turns 12!'
I Have CHARGE Syndrome, But CHARGE Syndrome Doesn't Have Me!
4th Birthday Photo Session
Sunday, June 5, 2022
Andi Bean Turns 12!
Andi Bean Turns 12!
Friday, May 28, 2021
Andi Turns 11
Every year, we commemorate the year with Andi's birthday video. Every year, it is a surprise unveiling. These past several years, she has voiced her opinion on what songs I can or can't use, or wants to know what songs I'm using. I don't tell, and pretty much do what I want, because of all the things I saw in the parent handbook when I signed up for this gig.... it was that. I get to do what I want! 😂
So, without further adieu: Andi Turns 11
And for those that like to roll down memory lane like me, the previous videos await:
Friday, May 14, 2021
Connecting The Dots
One thing I learned from a near 11 years of parenthood, trust your gut. This week, I noticed a few things that were 'different' with Andi. First of all, I mentioned to her once or twice, 'your balance seems off... you doing okay?' She seriously seemed to be a bit more wobbly, almost running into a few things when moving too quickly. The other thing I noticed was her labored breathing. I mean, she has had a runny nose with itchy eyes, a sore throat all week. Her breathing seemed to be more work. I attributed all of it to her seasonal allergies. I mean, even my eyes are itching and nose is drippy. Plus, in our new place, I've been leaving the windows open for a wonderful cross breeze before the horrid heat & humidity really kicks in ... so again, I attributed this to her allergies. (yet, still left the windows open!)
Before bed, we had decided to give her not only the allergy medicine she rarely takes, but some eye drops for allergies that her Eye Dr. suggested. Today, when I woke her for her bath, she mumbled something about not being able to open her eye. I assumed she meant that the allergy meds had her so groggy that she couldn't wake up, but when I finally turned on the light, I could see my very own version of Rocky Balboa trying to look back at me. Her right eye was completely swollen shut. The other eye was sticking together and swollen. I got her in the tub and gave her a cool compress for her eyes. By the end of the bath, her eyes were open, but goopy and irritated. You know when you have dark circles... but the circles under your eyes are a nice shade of red? Oh yeah. So, I canceled school for her, canceled my morning appointment, and got her to the Dr's office.
Turns out this girl has an ear & sinus infection. The goop coming out her eyes is the infection and hello... contagious! So... we're on a nice strong antibiotic (Augmenten) and antibiotic eye drops. Additionally, I'm having to wash all bedding, towels, basically anything she's possibly touched in hot water. It is believed she will be feeling much better rather quickly.
But the point of this post is a reminder. When you recognize something is off, seriously, pay attention to that -- often times, it really does mean something when you take the time to connect the dots!
Tuesday, September 1, 2020
The Gift Of Life: 10 Years In The Rearview Mirror
Ten years ago today was undoubtedly the longest day of my life. It didn't help that the night before was riddled with interruptions galore by several groups of medical staff trying to get an IV into a baby - causing her to cry and scream throughout the night. A night I felt so incredibly powerless to help soothe my baby, nor felt strong enough to tell them where to take their IV and shove it. At that juncture, I didn't yet know I could dictate action, or tell them to stop. Ten years ago today, our Cardiothoracic surgeon/hero, Dr. Stephen Langley and his team, worked to fix the defects in my 13 week old baby's heart. It was her fourth surgery and absolutely her most critical.
Andi was enduring congestive heart failure pretty much since birth. Her heart was working so hard, and yet causing so many problems, that she would've died had they not gone in at such a small, frail time to make the necessary repairs. Andi needed a Complete AV Canal - a complicated repair.
Complete Atrioventricular Canal defect (CAVC)
A large hole in center of the heart affecting all four chambers where they would normally be divided. When a heart is properly divided, the oxygen-rich blood from the lungs does not mix with the oxygen-poor blood from the body. A CAVC allows blood to mix and the chambers and valves to not properly route the blood to each station of circulation.
Andi had a hole in her upper chamber, a hole in her lower chamber, and one large valve that needed to be turned into two small valves. The surgery would take all day and she would be on ECMO - a machine that sustained life, while they repaired her heart.
Our favorite nurse from the hospital floor we spent most of the previous four months stopped by to wish us luck the morning of surgery, Misti. Since we hated our night nurse who insisted on torturing Andi the night before, we asked her if she would escort Andi to pre-op. One of the first times we as parents, learned we could call the shots. Misti whole-heartedly obliged and said not to worry, that she would take care of it. We felt much more comfortable having her walk with us behind Andi's crib as they rolled her through several white-walled hallways, under what felt like severe bright lights. A labyrinth of white on white.
When we got into the pre-op room, we were met by her anesthesiologist, Dr. Woodward. This was his second time working on Andi, as he also handled her on her first surgery - bilateral choanal atresia. He asked how she was doing and we said that she was exhausted from being tortured all night as they tried to get an IV in her. He slammed his hand down on the counter and begged, 'why do they do that?' He continued to admit that he could give her something and get that IV without issue and all of us could've headed into this big surgery more rested. This was a big deal to me, because it further showed me that I needed to use my voice and advocate for Andi. Here it is ten years later, and I can still envision Dr. Woodward, and hear his voice.
As we said our goodbyes, Misti walked us to the cardiology unit waiting room. Thankfully, they did not put us in the usual waiting room, but in a private area, so we didn't have to endure the sounds of other people. They gave me a poster board, some pens, stickers, and had me capture some things about Andi. A crafty distraction, and one I appreciated. I remember my whole body just seemed to vibrate all day - as if I had too much coffee. Yet, it was caused by fear and a lack of sleep. I was jumpy. I was anxious. I was more afraid than I'd ever been in my life. And despite being surrounded by family, I felt alone. No one could say or do anything to reach me. I just had to suffer through it.
It was the longest day, and each time the nurse would call with an update, my stomach would churn. She would give an update like, 'she is sedated and intubated now.' Appreciated, but given the situation, that nearly caused an ulcer.
I want to say they finished around 2 or 3 p.m., but I think it was even later than that, like closer to 5 p.m. I honestly don't recall, as it was such an incredibly long day. Dr. Langley came out to give us the update and he said she was doing well considering what she had just endured, and gave us a glimpse of what the next several days would be like... I think we all just professed our love to Dr. Langley for his work, his gift, and his efforts to repair our baby girl's heart. I'm sure there were many tears.
Andi would be sedated for days, making it so her body could rest and recover having the least amount of work to do. She was cold to the touch and had more machines and monitors around her than ever. Her PICU nurse gave us the rundown of what everything was, what it was doing for Andi, and why. I remember being completely impressed and overwhelmed by the entire scene. The room was dedicated to the baby in the crib, and all the machines around her, and little to nothing else. There was one or two chairs off to the side. The rest of the room just worked to sustain life. I have always made a conscious decision not to share pictures of what she looked like, but here it is the tenth anniversary of that incredibly difficult day and I think that stark memory appropriate to share today.
Because as strong as she is, and as much as she's been through - this surgery gifted her life. This surgery was absolutely critical to her. We are, and forever will be humbly grateful to the many hands that worked hard to give us our baby girl back with a repaired heart that no longer was killing her. And here we are 10 years later, wow. She just had her every-other-year cardiology check-up, her repaired valve still has a mild-to-moderate leak, but it isn't anything that is going to hurt her. Just something we will continue to monitor. Like her cardiologist said two years ago, 'Dr. Langley couldn't have done a better job if he tried,' Therefore, on this extra special ten year anniversary, I shout out a little louder our gratitude to Dr. Langley, Dr. Woodward, and all the other Dr's and Nurses that helped gift Andi life. We are forever grateful and appreciative of your work and we will never forget you.
Thank you! Thank you!! Thank you!!!
Wednesday, May 27, 2020
Andi Turns 10!
Double digits baby!!! So proud of you!
Sunday, July 14, 2019
Celebrating Milestones: The Making Of A Mini Me.
Almost a year ago, we moved into our house. This amazing house with a glorious pool in the backyard. Even today, Andi talks about her house with affection, or rather, appreciation. Soon after we moved in and the dust settled, we had Andi start private swim lessons in our backyard. Without the distraction of others around her, she would be better able to hear the instructor, and pay attention to the lesson. Up until that time, we had never put Andi's head completely under water. Never. Not washing her hair in the tub, not by accident, not at all. Enduring three sets of ear tubes to cease her chronic ear infections, I was a bit too cautious on getting her ears wet. First and only kid, let alone one with complex medical issues, don't judge. I was simply sick of all the antibiotics, the Dr's appointments, and that made me hyper-hyper aware of the things I could do to prevent more of the same.
So, I believe it was on her second lesson with "Gene-Gene, the swimming machine" where he got her to put her head under the water, with ear plugs! Sadly, we only had a month of lessons before the pool had become too cold for her to continue through the fall. With her BAHA surgery, we were a bit delayed in starting back lessons while we awaited her abutments to heal and be cleared for water. Once we started back though, the growth was obvious. Her maturity, her strength, her determination and her love of the water all seemed to roll into one perfect celebration.
This is the first time Andi has ever actually swam. Filmed last week.
Then this afternoon, while we spent the day in the pool, I filmed this to showcase the monumental (to me) realization of how incredibly far she has come and how she has shattered another milestone. She seemingly prefers being underwater these days. Probably one place where her proprioceptive sense is most easily actualized.
Celebrating Andi Bean is easy to do, but as we get further and further away from those dark days we were forced to endure, it's important for us to pause to celebrate these little milestones -- especially when they also fill her full of joy.
I see Andi playing around in the pool. Learning how to swim underwater to collect fish or rings at the bottom of the pool; walking hand over hand along the edge of the pool to deeper water; jumping up and down in the water; and I recognize my youth in these instances. It instantly flashes me back to my summers spent at the pool with my friends, where we spent all day, every day in the pool. From Memorial Day to Labor Day, there were few other places to find us. So, seeing Andi do things I used to do in the pool, just further fills me with joy. Not only because I see her progressing with her love of the water, but it reminds me of a simpler time in my own life. I love that we're able to give her a childhood that mirrors one of my own, that is filled with joy, discovery, learning, growth and one incredibly zesty personality that is really starting to blossom. She's not just a mermaid... she's a mini me.
Thursday, May 30, 2019
BAHA -- The Grande Finale
He did a hearing comparison between the two devices - putting the BAHA on a soft band (headband). The audiogram was all the proof we needed. Andi left with a loaner BAHA on the head band and when we walked out of the office building, she stopped. She questioned, 'what's that?' I stopped and listened. I asked her, 'do you mean the bird singing?' She replied, 'Yes!' So I asked pointedly, you haven't heard that before? 'No.' Her eyes lit up and she was giddy. I cried most of the way home. It's amazing what we all take for granted, and yet, kids like Andi remind us to pause and savor what we have -- because she does not have it. That day was simply joyful.
When we checked in with Dr. Steve again, he said he believed he could make her hear even better. At this appointment, we went from having a processor on just the right side, to putting a processor on both sides of her head. With technology, they can program the sounds captured on the deaf side, and send it to the ear that hears. Thus, possibly giving her a 360 hearing experience. Andi noticed the change, and for the first time in her life, started hearing things coming from her left side.
At the end of November, we went in for part one of the BAHA surgery. Dr. Torino drilled two screws into the bone behind both ears. One screw holds a post, the other is a sleeper screw in case something happens to the other screw. We would wait six months to heal from this, enabling the bone to solidify around the screw.
In mid-May 2019, we went back in to put the abutment on each post. The abutment is the 'snap' that sticks out of her head - to which the processor clicks into.
So, yesterday, Andi met with Dr. Steve to have her BAHA processors attached to her new abutments!
Attaching to abutments:
Andi will 'rock you!'
The audiogram showed improvement in overall hearing. Below is audiogram comparison. On the left is the over-the-ear hearing aid (A) -vs- the single BAHA processor on the soft band (B). On the right, was yesterday's audiogram with the dual BAHA processors clipped directly to the abutments.
Her audiogram showed an improvement, but he said that she will notice the difference more than her audiogram will show.
But, this is Andi... she wanted to tell you herself:
Dad, I hope you enjoy hearing her use of 'Whatevah!' I have the feeling that is a word I will likely suffer for quite some time.