Humbled Ramblings

There's much for us to be humbled by... as quite a few fellow CHARGErs are suffering recovery in a hospital.  All are fighting a serious recovery.  Each day lately, we've had a name on our 'begging for help' list.  See... I'm really NOT a religious person.  I am very conflicted on the whole 'higher power in the sky!" personna that I've been sold.  I don't necessarily believe in that.  I tread lightly though because I don't want to disrespect another's belief!  I encourage others faith... my theory is, 'whatever works for you!'... I do not judge nor discourage others......although many hold beliefs that are very different than mine.  That doesn't bother me.  I think the more energy, in any form, you can conjure for another, the better to receive.  For example, one of the first CHARGE kids I was ever witness to was Reuben.  Reuben just endured a simple 29th surgery that didn't go so simple, as his airway was compromised with a blockage and for five or six days, he was in ICU in critical condition.  This is the CHARGEr whom online blew me away and gave me so much hope, courage, and love.  Reuben has had a really rough go this week, but he was discharged today.  My heart is full of hope for a quick recovery, but these last few days have been grueling.  I have to keep in mind that several of our readers do not understand the extent of our experience, our reality.  It's our job to give a glimpse, so there's more understanding, more empathy, whether it is resolved out on the road letting someone in a daze drift into your lane without much thought, or whether its is someone at a party explaining their reality to you and you're overwhelmed by their situation.  (this has happened to me, often.)  It's all in all a reflection of the good in your heart.  If you have good in your heart, and you follow-through with that, then get your ass down to donate blood.  Get yourself involved with charities that actually benefit families like us (FYI - we've had NO help, other than a scholarship to attend the CHARGE onference!)    I'm sorry, but I haven't seen March Of Dimes around in my little world.  I haven't seen many charities, at all.  But then again, there are many that are worse off than me. 

In any case, we are humbled by those that are still struggling.  Although I am not religious, I actually prayed for Reuben and Kalob and send my good vibes to Kane and those other yougin's still struggling.  My heart, love and good vibes are being sent for each and every CHARGEr (and any kid) fighting the good fight, whether its a CHARGE affliction or any affliction.  There's nothing more worthwhile than a kid fighting any fight - whether it's a genetic condition, medical affliction or a bully.  We should all gather around and surround our young with love, strength, encouragement and faith - no matter the denomination.  They all need us, whether you know it or not.  And we're humbled by all of those that 'get it!'

Ear Infection, Round 2

Andi thought it would be fun to get up early this morning.  She cried and cried.  Normally, we let her cry it out and she usually calms herself, rolls over and goes back to sleep.  This morning, the cries got progressively more demanding.  So, I came up to her room, grabbed her out of her crib, (which instantly stopped the crying), and brought her downstairs to the bed.  Normally, she'll curl up with me and go back to sleep.  This morning, she wasn't doing that, so up before the crow we were.  She asked for water and shunned her chocolate milk, which left me asking, "really?!"  Normally, I give her the Ipad when she wakes and that entertains her through the grumps of waking up.  Well, the Ipad battery is dead and the charger is over at Grandma & Grandpa's house, to which we have yet to retrieve it.  So, without that, I put on an episode of Yo Gabba Gabba!  As long as YGG is on, or a Signing Time video, she was fine.  But she was easily distracted and whiny, often climbing off the couch, crawling or cruising over to me, and then demanding to be held.  After I put her back for the umpteenth time, she pointed to her left ear and cried.  Uh-Oh.  It was just after seven, so I placed the call. 

The foolish woman on the phone said that I should just have the advice nurse call me, and they can redo her antibiotic prescription over the phone & that way I won't have to bring her in when she's not feeling well.  I said, 'well, I'll have to bring her in regardless to pick up the script. But, okay.'  So, an hour later I was contacted by a Ped's nurse who knew who were are!  I knew they wouldn't in any way shape or form send Andi packing with a script without seeing her.  Not my girl.  So, we were to be seen two hours later.  An hour after that call was made, Andi was acting like her usual self again.  I got us out the door, and over to see a different pediatrician as our usual Dr. is on vacation.  The nurse we saw totally knew us, as she'd seen us in the past.  She too knew that Andi is Chani's (our pediatrician's nurse) favorite, and promptly told us that she'll be back 7/1 from maternity leave.  The Dr. came in and quickly confirmed what I believed to be true...the ear infection is back (if it ever truly left) and we'd need to get on a different antibiotic.  The funny thing is, we knew this pediatrician too, as she once shadowed our cardiologist up at the hospital.  It cracks me up how small this world seems at times.  Both the nurse and Dr. were blown away at how well Andi is doing.  Again, the sentiment I hear from professionals is wonderful, although a bit concerning that they didn't expect her to do so well.  Anyhow, we stopped at the burrito stand down the street on the way home because we were starving, and I didn't want to get home and have to make lunch.  At home, I sat Andi in her high chair.  I cut up her bean &  rice burrito and gave her some chips.  When she finished, I was checking emails on the computer when I stopped what I was doing, hearing a familiar sound.  I turned around to find this:

Least I didn't have to fight her to take a nap today!  Sadly, this occurred before I was able to give her the first dose of antibiotic.  Oops. 

The BE Charmer (yes, BE!)

The past several Monday's, we've gone to the gym so I can attend the evening boot camp class.  Each time, Andi has to use her walker on the sidewalk, through the doors, and past the check-in to the Kid's Club - where she plays with all her friends.  Her 'friends' are the adult women working there.  She loves them all.  In any case, the past several Monday's we've attended class, we are greeted at the door by the very large man I wrote about awhile ago.  By very large man, this man is obese.  He's probably the largest person I've ever spoken to.  He's usually completed his workout and is waiting by the front door for a ride from someone.  I've noticed he seems to be waiting for Andi though, expecting her, hoping to see her.  When he gets a glimpse of her coming, he seems to hop up and throw open the door, and encourages her to come on in.  It usually surprises Andi.  Today, like clockwork, he threw open the door with an exuberant 'Hello there!'  Today, Andi gave him a big smile and said, 'hi!'   Again, this man stands at the door, holding it open for several minutes waiting for her, encouraging her, and wearing the biggest smile she encounters.  (This is all in the most non-creepy sense of the description.)

I got Andi checked in and then headed over to the bathroom.  After which, I headed to one machine, as I had a few extra minutes before class started. I sat down at the machine, to hear a PA announcement for me to return to Kid's Club.  I walk in, afraid she's already causing trouble, but am told that Andi just needed a diaper change.  I ran out to my car to get her diaper bag and when I returned the large man was still sitting by the door waiting for his ride.  He stopped me and asked (respectfully) why Andi needed the walker, noting that I'd already told him she has balance issues.  I told him she has CHARGE Syndrome, what it is, and what that has meant for her.  In my opinion, he was dumbfounded, impressed, and humbled all in one.  He went on to tell me that he was having a really bad day, but he saw Andi and she just made his day so much better.  He said that she really has touched him.  Knowing her story seemed to give him better perspective as well.  He acknowledged that what she's been through could make his bad day seem so petty.  I couldn't help smile and feel so totally impacted as well. She's helping others just by the mere fight and light within her.  She's a charmer.

At the end of pre-school today, Andi's teacher said she had another great day and that she was so smart.  She asked, 'do you know how smart she is?'  I just laughed, nodded and said 'yes!'  I told Andi's pediatrician about that later in the day and he said, 'was there ever any question?' and I said, 'no, but it's really nice to have others, especially professionals, notice and acknowledge what we already believe to be true.'

So, lastly, Andi went to see her pediatrician today.  Last Wednesday, we ended up at Urgent Care, as Andi pointed to her left (bad) ear and started crying.  It wasn't an 'I'm tired and grumpy cry!'  It was different, and different has always meant some sort of trouble.  It was deemed she had a bilateral ear infection, but that's not why we went to see her Dr. today.  Today was just her yearly 'wellness check' - standard operating procedure.  For people like us though, they see us more often and know us better than the S.O.P.  In fact, they give you a questionnaire to fill out prior to the appointment.  The first question asked if the child has had any surgeries or hospitalizations since the last appointment.  I asked the nurse, from this time last year or since two months ago when we were here last!?   See, we don't fit the usual mold.  In any case, Andi's weight is slowly creeping up, 23 lbs, 13 oz's.  She's 33" long, which is stagnated.  I pointed out that the 'R' is CHARGE stands for 'restriction of growth.'  I mentioned to him that apparently they sometimes give HGH to kids with CHARGE.  So, he put in a referral for us to go see Endocrinology, whom specialize in growth hormones, thyroid, reproductive hormones, & adrenal gland.  Hate to be taking on another specialist, but this is important.  We also got a referral to see the eye Dr. again - as she wanted to see Andi when she was three. I don't even remember when we saw her last, but imagine it was well before her first birthday.   Other than that, her pediatrician was really excited about Andi, especially how chatty she is now.  He said it nearly brings tears to his eyes to see her and how well she's doing.  Andi really does impact those around her, and it's amazing to witness. It's as if she's a BE Charmer.  Not a bee charmer, but a BE charmer - as she seems to make those around her want to BE better, BE more, BE healthier.  Yep, she's a BE charmer.

Andi Bean Turns 3!!!

Yesterday, Andi enjoyed her 3rd birthday!  The morning started with several helium balloons decorating our living room, presents galore on the floor, and some extra attention from her visiting uncle Chris.  We had a great day that included a trip to the local aquarium and dinner out on the town, where Andi ate like a champ.  It was a fun day full of laughter and moments of pausing to appreciate how far we've come in three years.

Over the past several weeks, I've worked on a Powerpoint presentation capturing a glimpse of the past three years in photos.  the slide show is set to music and it is, like life itself at time, extremely long.  Had I realized how difficult it would be to get it online, I would've chosen a different program.  Apparently, I have to convert it to a video file to get it up on You Tube, and then there's the whole size issue on top of that... basically, I'm sharing it through MailBigFile, which I renewed my subscription to - so if you haven't seen it and want to, shoot me a message with an email address, and I'll get an invitation to download it to you.  

Preschool!

Andi's first week at preschool has been a tremendous success! 

The preschooler's breakfast of champions!

Preschool dancing with Bunny!

First ride to school!

Arriving in the classroom!

First day pick-up!

First day celebratory dinner:  Tom's Pizza, which she devoured.

"pizza! yum-yum-yum!!!"

She has seamlessly transitioned into the school, impressing the teachers and therapists.  Upon leaving school after her first day, we recorded this: 

So, her new words this week are "school", "backpack" and "Hi. How are you?!"  She's very friendly and outgoing, although not everyone understands her words.  She is very small compared to the other kids, but pretty happy and considerably well-adjusted.  Some of the other kids talk a lot, some don't talk at all.  They are all adorable in their own way.  One little boy actually dropped his teacher's hand and grabbed mine, as if to have me walk him out to the waiting bus. 

The teacher is pretty pleased with Andi's command of signs and words.  She said she has had a fairly easy time communicating with Andi, which is wonderful.  Andi's new PT is going to get her a different walker.  One that allows all four wheels to rotate, thus hopefully eliminating the steering problem we currently have.  As of now, someone needs to walk along side of her and correct the direction of the walker, as it pulls to the right.  The new walker will hopefully give her a little more independence. 

I'm trying to figure out where I can best spend my time while Andi is at school.  I've been trying to find a place I can set-up a mobile office, using their Wi-Fi.  I have tried two different Starbuck's and neither of those really worked for me.  Too small, too crowded, too loud, and dang it, their coffee just ain't all that great to me anymore.  Today, I left the overcrowded Starbuck's when there wasn't a place to sit and ended up sitting in my truck with my laptop & cell phone.  At one point, I look up and notice Andi's class moving outside to play with balls under this large canopy structure.  The teacher led the bunch, the speech therapist flanked the group carrying Andi's walker, and the teacher's aid, carried Andi.  I sat there and watched from the confines of my truck, and as I continued to watch, tears welled up in my eyes.  It was one of those times when I really noticed how "different" Andi is compared to other kids.  It broke my heart.  She was stood next to her walker and encouraged to join the activity of kicking the ball.  They seemingly worked to include her, but she was definitely an outsider, unable to run and chase the ball with the other kids.  I know being in school will help propel her forward faster than without. I'm thankful she's going where she is going, as I feel these teacher's are really well-equipped to deal with kids with multiple needs. I'm also glad that Andi really seems to like school!

A Brand New Chapter

This Monday, May 13, Andi will begin a brand new chapter that will continue for what we hope will be at least another twenty years, SCHOOL!!!  She will attend pre-school from 8:45 until almost 11 a.m., four days a week!  She is in a hearing-impaired pre-school where they will speak & sign, work on speech, learning, social skills, listening.  Our new OT and speech consult will happen during preschool hours.  I'm pretty excited for Andi because she will be exposed to so much more in the classroom, surrounded by teachers that can help her in ways I've probably never even thought of, and engaged by peers who will challenge her in every way possible.

I'm pretty thrilled this is happening just before her 3rd birthday and at this exact time.  I found out this week that our deductible went up from $500. to $2000. and so our therapy appointments will cost us around $150. each hour visit.  So, we're going to take a nice long break from both speech and physical therapy through our insurance provider.  There's no way I can afford to continue those therapies at this time.  For that kind of money, I think I'd rather pay for her to get hippotherapy.  That's just an insane amount of money they expect me to shell out each appointment.  Also, my deductible accrual seems to have reset based on the new contract.  I need to ask about that, because I know we'd met the $500. deductible - as it's a balance we're paying on as we can.  I have always said that if you use your insurance, you should pay for it, but given our situation, this seems seriously unfair.

In any case, a new chapter is about to begin and we're hopeful it will be the tool that sends Andi to learn, grow and develop even faster.  She is a little sponge, hungry to learn.  I'm excited to see watch her thrive!!!

Yearly Cardiology Check-Up

So today was Andi's yearly cardiology check-up.  We headed up to OHSU for our Echo, and then we went onto meeting our cardiologist.  It was 9:30 in the morning when I shopping for parking, and all the places were taken, even my usual hidden gem of a parking area.  I had to get a slip and park in the main garage.  I asked if they were having a party and the parking attendant seemed equally surprised by the amount of traffic they were enduring.  As I drove to the overflow parking lot, I considered it a sign that our luck was changing, as I haven't parked in there since Andi was a fetus.  So we parked and I carried Andi, my backpack purse, the diaper bag, and her walker to the end of our level looking for the elevators.  As I almost got to the end, I saw a sign saying the elevators were behind me.  So we turned around.  We got to the elevators and I questioned my sanity, and strength.  We rode up with another family and they got off on four, I went up to seven.  I figured it was the 7th floor that had the bridge that walked over to the children's hospital.  We got off that floor and saw absolutely no signs, no directions, nothing.  So we got back on the elevator and went down to four.  That took us through a hot tunnel with signs to OHSU, but I really just wanted to go to the children's hospital.   I ended up getting back on the elevator and returned to the second floor.  At this point my arm was dead and I decided we must have her stroller. So, I got out her stroller and packed it full of all the crap I was carrying -- including folding up her walker and hanging it off the handles of the stroller.  I secured Andi into the stroller and we ended up walking out of that parking lot hell of confusion. By walking back to the end where I started and saw the exit as soon as I rounded the corner.  Ugh.  So, at this point I'm pretty worn out and very warm.  We have to navigate a very odd few things including getting some elevator doors nearly closing on the stroller, and one of the three most busiest elevators I've ever endured, but we made it. 

Our echo went swimmingly well, especially after I pulled out the phone for Andi pants to play with.  Once distracted by the app's on the phone, she was no longer interested in grabbing the ultrasound wand.  She did great and her tech, Randy was really impressed by Andi.  She's a charmer!


After the echo, we went down one floor to the clinics. We checked her in and I expanded her walker so she could walk around a bit.  She walked over and said "hi!" to the fish, and enjoyed the plethora of bubbles the volunteer was putting into the air around her.  After that, it was time for a much-needed snack.  We grubbed on some food and were ushered into a room shortly after.  We were weighed, measured and updated.  She weighed in 23 lbs, 2 oz's, but they always seem to have a lower weight than Kaiser!  I wasn't too sure about the accuracy of her height measurement, because I don't think she was at the top of the device.  Paperwork shows, 2' 9.07".  We finished with the PA and a few minutes later Dr Kelly appears.  He is very animated with her and she seems to like him.  He kept telling her what a big girl she was... at the end of the appointment, I mentioned 'do you remember how small she was?' and held out my hands to indicate how much she's grown.  I mean, she's still super small, but compared to even a year ago?!  She's grown a lot.  So basically, the echo showed she still has mild to moderate valve regurgitation, but it's more on the "mild" side than the "moderate" side.  Everything looks good and he's optimistic that she won't require any more surgery.  We're to continue with the Enalipril, which helps reduce pressure in the heart, to help ease it's work.  He increased the dosage based on her weight gain, and sent us off with a chorus of "See You Next Year!" 

After that appointment, we rode up two floors and landed at nine!  We walked the bridge into OHSU, went to get another "scooby snack" and marched through the busiest floor in OHSU's main hospital.  We walked across and down the hall and landed at the Physician's Pavilion, where we had our third appointment of the day, audiology.  This was Andi's follow-up appointment to getting her hearing aid.  She was pretty crabby at this point and wasn't even all that thrilled to see who she was pretty smitten with just two weeks prior.  We sat and ate another snack, then I had her use her walker to the children's area, where Andi made a friend who wore a cochlear implant.  He was much younger than Andi and almost as big as her.  It was neat to watch her interact or even study another kid, as I don't normally get to see that.  The kid  ended up totally falling off his chair and landing on a book.  He started crying hard.  His Mom tried to comfort him and Andi was so upset that he was upset, that she started crying.  It was pretty cute.  She was so charming apparently, that when the audiologist came to take us in for testing, the kid was crawling toward her and freaking out.  His Mom said he has some separation issues, but it was pretty sweet. 

Andi did really well on the minimal amount of hearing testing they could do.  Aided, with verbal commands, she blew them away and tested just below 'normal'.  They hadn't yet really seen that, so it was nice.  But, Andi was pretty worn out at this point, so she wouldn't sit still for much. 

We headed home and although she was exhausted, she still took awhile to get to sleep.  Now, two hours later, I'm having trouble stirring a Bean!