Monday, April 23, 2018

Bottles & Buckets


Lola  ~  April 22, 2018


Last night as I was feeding Lola her bottle, I remembered something important I wanted to share with all of you. Let me back up for a minute...

When Claire was born almost 17 years ago, she struggled with her feedings. I was bound and determined to breastfeed her. I wanted every single additional IQ point I could maybe provide for her & also longed to connect with her any way possible. So, every single feeding every 2-3 hours involved me breastfeeding her first which was a struggle for her and me (Let's not even discuss her tonic bite... suffice it to say our nursing relationship ended when blood was drawn! <gasp!>), then I would use the breast pump for 5-10 minutes to be sure I had extra milk for her and to keep my supply up, and lastly, I would feed her another ounce or two via a bottle to be sure she got enough. I would then sit her up, burp her, and watch her reflux the contents of her stomach into the bowl I kept next to the couch for just this very thing. I would pour what she vomited back into the bottle to see how much she lost, and it was usually 3/4+ of the total amount I fed her. No matter what I tried, this happened every feeding, maybe 8-10 times a day. It was brutal and frustrating and draining for both of us. She could not be laid flat EVER, due to her severe reflux. The medicine her doctor prescribed for us to help with her reflux actually made her vomit even more, if that was even possible. I don't know how she continued to gain weight amidst all this chaos, but she did. 

It wasn’t until Claire started solid foods (organic, raw, fresh bananas and avocados) around 9-12 months of age that the reflux finally stopped. I found myself resorting to solids more than liquids because she was able to tolerate those so much better. She was unable to use food thickeners for her liquids because they contained her food allergens. I knew she needed more liquids, so I would add an ounce or so of her formula to her mashed avocados & bananas. I also was able to add butter and ghee to her feedings to increase her caloric intake. Her bi-weekly weight checks showed unbelievably slow but steady gains. It wasn’t until Claire contracted Rotavirus at age 3 that we realized how important her hydration was. The illness involved nearly constant diarrhea and vomiting over the course of several days. This led to severe dehydration and almost her death. Chronic dehydration is no joke. We had a g-tube placed a month later when her body was stronger, and we’ve never looked back since. Claire is probably the healthiest member of our family. She never enjoyed eating, and the g-tube, while it seems invasive and scary, honestly isn’t that big of a deal. We promised her we would never again let her get dehydrated. She is rarely ill, and her diet is immaculate (full of fresh, organic fruits, vegetables & greens) because she doesn’t have to taste it. HA! Total win-win. Best decision we ever made was getting Claire a g-tube, and 13 years later, I have zero regrets about doing so. It saved her life.

Fast forward to a few months before Lola’s birth when we found out she too had the same condition as her sister — While we knew the g-tube was a lifesaver for Claire, I did sort of feel like we lost one of the last “normal” parts of parenthood the day she got her feeding tube. I remember praying for two things those last few months of Lola’s pregnancy: 
  1. I prayed she would survive the birth process.
  2. I prayed she would be able to nurse and eat “normally” and that it would bring her joy.
Guys, Lola turns TWELVE in 5 days. 12!!!!! I am proud to say our prayers were answered. She is *still* able to drink from a bottle, she eats baby food off of a spoon like a champ, and she flat-out LOVES TO EAT still.

What hit me today is how absolutely miraculous this is. I will never forget all the people who told me right after Claire was born that she would likely lose the ability to eat & that it was pretty unrealistic to think that she would be able to continue to nurse/drink from a bottle/eat off a spoon for very much longer. I remember them telling me how it wasn’t that abnormal for her to be able to eat orally before age 1, maybe even age 2. They told me that somewhere between age 1-2, the suck-swallow reflex turns into a “learned behavior” and that a huge majority of kids who have brain abnormalities simply cannot learn how to coordinate this any longer. Many will begin to aspirate at some point. They will not be able to swallow effectively anymore, and the fluid that is accidentally aspirated into their lungs will make them sick with pneumonia. They all swore we would be in and out of the hospital frequently with aspiration pneumonia, and this would cause lung damage and scar tissue. At some point, their little bodies wouldn’t be able to fight this anymore. They all urged me to schedule a g-tube placement for her ASAP. They told me the warning signs to watch for. They worried about her small size and fragility. No one thought Claire would live to age 1.

After having Lola, these words echoed in my head once again. I remember being terrified once she turned 1 that I would soon see the decline occur. I watched her like a hawk during feedings. She was even tinier than her big sister, and she seemed to get sicker more often than Claire also. She too fought horrific projectile reflux (And it might have been more intense than Claire's ever was -- One incident, she actually projectile vomited a distance of 15 feet, which if you do the math on that, considering she was approximately 18" tall at the time, this would be like a 6' tall person vomiting a distance of 60 FEET! That shit was POWERFUL, yo!), though it was easier to replenish because she ate so well & had such a good appetite. To this day, I feel like much of our days are spent feeding and preparing fresh blended foods for the girls. (SO GRATEFUL for Scott, our babysitters & nurses for stepping up & helping share this responsibility with me now -- Don't know what I'd do without you guys!!!) I have always wanted to give them what they needed. I was determined to optimize their lives and “save them” from their grim prognoses. I wanted them to reach their full potentials no matter what. I still have no idea if anything we do has given them the opportunity to defy odds as they have or if it would have happened regardless. Honestly, it just makes me feel proactive & at this point, I'm scared shitless to stop doing what we're doing, as SOMETHING is clearly working.

I guess my message to all the parents of children with special needs is this:

No one freakin’ knows what the future holds. NO ONE! Not the leading expert in the field, not your pastor, not your Mama, not the parent who has a child JUST LIKE YOURS. Anything — and I mean ANYTHING! — is possible with these kiddos of ours. Be willing to think outside the box. Listen to your Mommy instincts. Question everything. Do your research. Ask other veteran moms for tips. Seek alternative solutions. Have a support network to lean on for additional help. Don’t give up on what you hoped for before the diagnosis. Never lose hope. Stay positive always, even if you have to "fake it till you make it."  I repeat, NEVER. LOSE. HOPE!

None of this was supposed to happen. Claire & Lola were never supposed to be able to eat orally for years on end or survive past age 1 or progress developmentally or even have vision. They were supposed to be in the hospital frequently and ill often. Don’t get me wrong, we have struggles beyond what anyone can fathom, but they are struggles we are coping with and still learning from. Never doubt for a moment that your child isn’t strong AF because look at how hard they fight daily to be here and function. They are fucking warriors and superheroes and badass odds-defiers, every last one of them.


SO appreciate all who came before me carrying buckets... You guys saved ME.

xo

Monday, March 05, 2018

Claire's Night to Shine

On Friday, February 9, 2018, our sweet Claire, whom we never thought would ever get to take part in "normal" high school activities, WENT TO THE PROM.  And not just any prom... she went to the Tim Tebow Foundation's Night to Shine prom! We learned about this prom last year but were unable to attend because it conflicted with one of Cal's basketball games.  This year, the stars aligned, and our girl was able to go!


Now, finding an age appropriate dress for a 16 year old who is only 36" tall and 25 lb. isn't easy!  Most of the dresses her size are toddler mini bride dresses or flower girl dresses which look like they were designed for a 3-4 year old. Ditto fancy shoes. I vowed to make Claire feel special & like any other 16 year old, so I found a jaw-dropping princess dress on Amazon which could be made exclusively to fit each individual person. The seamstress we worked with was fast & very skilled, and the dress arrived a good week before we needed it.  And let me tell you... IT.  WAS.  PERFECT.  Just like our badass, strong girl. It could not have been more "Claire-esque" if I'd designed it myself. 😍

We spent the afternoon putting in rollers, painting fingernails, and letting Claire snooze so she might have a fightin' chance of staying awake later that night. I reeeeeally should've hearkened back to 2012 when we tried Bantu knots, which were such a booming success, but alas, I did not. Let's just say, I pert near (I have always wanted to use that phrase in a sentence!) paid the price. See below for my overzealous roller action...

Sleepy girl getting some beauty rest before her big night!



You & that dad-gum camera again?!  REALLY?!?!?
Oh, and did you SERIOUSLY use the smallest rollers we had?  I'm so screwed.

Letting her nails dry... and actually holding her "lickstip" (as Cal used to call it when he was a toddler!)
and Chapstick without dropping them at the same time!  WOOHOOOOO!

PS -- The brilliant combo of OT + hours of primping = CHECKMATE, yo.

Those eyes... omg.

Claire was workin' the classic pin-up pose like a total girl boss.

"Ain't no mountain hiiiiiiiigh enough..."
Oh sorry, I mistook you for someone else!!!  (Who doesn't love them some Diana though, for real?!)




OMG you guys, my girl is a stunna!  Could not take my eyes off of her all. night. long.

I didn't think I could possibly love this man o' mine anymore than I already did, UNTIL THIS NIGHT.
He was the coolest dad, so interactive, so patient, so loving, SO FREAKIN' FUN! I'm lucky AF, you guys.

Classic positioning having Claire's feeding pump in the background. 😏 Oops!

Total perv status for both whippets.  LOL
If you look close, you can see they are workin' their black/white bow ties! Oh, you fancy huh!

The back of this dress had me all heart eyes allllllll niiiiiiight looooooong!  It has a traaaaaaaaaain!!!!!


After a crap ton of pictures at home, we headed out to Aviator Church for Night to Shine 2018. We weren't sure what to expect, as we'd never been before, and we hadn't even talked to anyone who had. We arrived to check in, Claire got her "under 21" bracelet (no Tequila Sunrises for our little party girl! JK, it was just to ID who she was), and we waited for her to get announced on the red carpet.  We could not believe how many people were there, how incredibly kind everyone was to all of us, and how "all out" they had gone.  We were simply blown away.
Waiting in line to be announced for the red carpet!



Josh Kelly, red carpet announcer, lit it UP!  He made it so very special for everyone involved.






Getting her wrist corsage





We were told they had a party bus as well as a limo in which the attendees could ride around the large parking lot, so we decided to brave the bitterly cold weather & winds to check it out!  The party bus had already left and no one was inside the limo, so we quickly jumped in for a spin.  To our relief, it was about 85 degrees inside the limo with the heater on blast, which our Mimi LOVED! (Scott's pit stains might have disagreed though...  HA!) The music was blaring, the ceiling lights were flashing and changing colors, and SHE.  WAS.  IN.  HEAVEN!!! This might have been her favorite part of the whole night. The last time I saw Claire this into the lights was in Vegas at New York New York where the little bubble lights lined the ceiling of the entrance. Her eyes immediately darted up as soon as she entered the limo, and she stared in awe at the ceiling the entire few minutes we were inside.  It was so visually stimulating, and we enjoyed watching our girl take it all in, feeding off her happiness & delight.   

















We decided to venture into the dance hall itself, again unsure of what to expect.  We were in complete awe when we saw this...


It was decorated SO beautifully inside... much more exquisite than we ever expected!



'Bout to get our swerve on... 



 
I'm not sure who was having more fun that night -- Claire, Scott or me!  The DJ was slaying, the videographer was capturing everyone dancing & projecting it onto a huge screen, and the rest of us were gettin' down with our bad selves!





"Hold me closer tiny dancer..." ~Elton John



We were so stoked to get to meet one of our online friends in person whom we had known on Facebook for almost 4 years. Brianna & Claire were like long-lost besties after 30 seconds! They kept stealing looks at each other, almost like, "Hey girl, nice tiara!" "No, yours is soooo much better, girrrrl!  OMG!" "Is your Mom annoying you as much as mine is?!?!" "Totallyyyyy.  Let's ditch these losers!" We were cracking up at their reaction to one another! Both looked simply stunning. ❤






"Cuttin' a rug" with her Daddy!





Oh my heart.  <gasp!>

Possibly my favorite pic of Claire with her Daddy EVER.


Claire was shocked to see that her brother, Cal (& his girlfriend, Kerby),
had made a surprise appearance on her special night!

Kerby, Cal & Claire

Check out Claire's sparkly Chucks!  Do they make these in my size?!






  Image result for quotes about shining



For more video footage of this breathtaking night, CLICK HERE for Aviator Church's video highlights (peep our girl at the 1:08 mark!) or visit THEIR WEBSITE for more info about this event, ways to donate, or learn how you can be a part of this touching event next year. Please know that even if you don't have a child with superpowers who is 14 years of age or older, you can still be a buddy/volunteer in your area! Scroll to the bottom of THIS PAGE to locate a Night to Shine Prom in your state. Join the mailing list. Check out the #nighttoshine hashtag on Instagram. See the pure joy on the faces of all who take part in this unbelievable night. I SO wish we had known about it sooner!

Lastly, thank you, Tim Tebow, for ALL you do for individuals like our Claire. The world is such a better place because you are in it. We are eternally grateful for your giving heart, your ability to see the beauty in places most cannot, and for "fighting for those who can't fight for themselves." We bow to you & are so proud of you for being a voice for not only Claire but also for others who are unable to speak and be heard. THANK YOU from the bottom of our hearts. 💝

 xo
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