Born @ 27 weeks
2lbs 7oz

Wednesday, April 16, 2014

The Color Purple

If there were a color for where our family is right now:
The Color Purple.

As in the color purple of the Lenten Season, as we wait for the celebration of Easter.
"Walking through the darkness looking for the light."

Waiting. Patiently.

We are in a place of waiting, as time stands still to receive the plan from Shaw's AeroDigestive Clinic Medical Team from over two weeks ago.

These two brave and adventurous boys...

...spent the majority of the last two weeks in and out of doctors offices, testing facilities and therapists' offices. (Hello Spring break).

Not because they were sick, but due to the requirements of this 'Collaborative Team' initiative to develop a unified plan for Shaw's treatments and future.

For those of you that endure a multitude of testing for your child, you have likely had both positive and less-than-stellar experiences. For those of you that are beginning to endure your child's testing (or are fortunate enough not to have to endure it at all), I can't encourage enough to trust your intuition and advocate for your child.

When you have that feeling...
The ''Wait. Are you doing that to my son? Is this okay? Stop. Is this normal?"

It's not and it's okay to stop them and get a better understanding about what is about to happen.

Here are two very distinct differences between two procedures (both within 24 hours of each other) Shaw received last week. Both Radiology. Both requiring barium (a nasty, chalky drink to outline how Shaw's digestive tract and swallowing systems are functioning via X-ray).

Nurse I: Lying Shaw down on the table,

Note: Shaw already has intense anxiety with procedures - especially preformed by men. He clues in to the 'Oh you're so cute. This isn't going to hurt at all. Mom, hold him down, while I stab him with this needle.' routine. He gets it and he doesn't appreciate the b/s.

We chose to be very honest with him. "This is what is going to happen." "It likely will hurt for a moment." etc. etc.

...the nurse told him he was going to need to drink (already awkward while lying on your back), while simultaneously taking X-rays. Only, she didn't tell him when she was going to squirt the GIGANTIC 8oz syringe (that could have held the equivalent liquid as a 'belly wash').

She started slowly, saying 'Okay, here it comes. You have to swallow.' and followed with shoving, then squeezing it into Shaw's throat, coating his face, eyeballs, hair, me, etc. in the process as he screamed relentlessly - both choking on the concoction and terrified by the lies she was telling him.

Angel Nurse: The following day, we were prepared to do a similar test - only this time, sitting up. This time, the OT called me 24 hours prior to our procedure (from her mobile phone) and asked if we would like to come in and just sit in the testing seat to get Shaw comfortable for the procedure the following morning. "Just to get him used to it." she said.

While extremely grateful for this admirable attempt to make our son comfortable, Michael and I firmly agree that one less trip to the hospital is like Disneyland to us. There is no comfort in doing a walk through.

Instead, I thanked her and asked if she would walk me through the test, so I could talk with Shaw about it. No surprises.

She didn't just tell me.

She sent an online book to read to Shaw. It included a picture of the hospital, a picture of who would be taking the tests, a picture of the seat, pictures of the stickers Shaw would see and receive once complete, a description of what would happen and an explanation of why it's important.

This lady needs a raise.  She was pretty incredible.

Shaw knocked this procedure out of the park.

We did refuse some of the suggested testing. The specialists wanted to sedate Shaw to have a collaborative look at his airway.

While we wanted to optimize the team and their efforts, we couldn't do it. Knowing Shaw. Knowing that he goes in for a routine ear tube placement and ends up in the PICU on life support for nearly a week...

You want the best for your child - and these are the experts; however, we will never electively put Shaw under anesthesia. His reactive airway is an anomaly and we am comfortable with making decisions knowing that. I confessed our resistance to the procedure prior to the clinic, in the case we would no longer qualify.

Thankfully, after Shaw and I sat in the clinic's office for 5+ hours (during nap time) and met with each of the Specialists, every one of them agreed with our decision. Instead, the doctors will be on call for the next (hopefully never) emergent surgery and take advantage of the time he is sedated for the group overview.

So brave and patient.

The good news is, we made it through. The only thing remaining is an overnight sleep study, that is not available until July.

And because of ever-present 'Mom Guilt' of having the boys in and out of appointments all week, we likely OVER did it with the time remaining...

One of the many ways Mommy's guilt weighs in after endless dr. appointments.
Denver Children's Museum. Insanely busy, but a Richter crowd pleaser.

Lowry Beer Garden
Friends + cold beer for Mommy & Daddy. Sunshine + every game under the sun for the boys = Perfecto.
Denver Train rides at the zoo.

Colorado Natives.
North Carolina Neighbors.
So comforting to see dear friends. (the boys and ours!)
James & Finn, the boys buddies (and pen pals). 

Spring Break... snow. ??

Soccer season!

my people

BatNash & SuperShaw at their finest.  (Likely, a punch in the face followed).

Love love love that Nash loves his Nana's corn chowder and Shaw is a bottomless pit for sushi. :)

Meeting my college roommate's babies!!
Who would have thought years ago on Bull St in Charleston, SC that we would be in Beaver Creek with our families one day. Left me with wishing time would stand still and we lived closer. 
Nash is tickled that Mommy froze his milk for April Fools Day.

Swim lessons!!

Saturday morning ritual. (The burly is a baby whisper).

Out with the crib...Shaw graduated to a big boy bed!
And look who is enjoying the big boy bed, as much as Shaw...

As our heads swim with trying to make the best decisions for our boys, we often receive conflicting information with regards to Shaw.

For instance, when Nash was three he LOVED soccer (likely because his Daddy is so talented). Shaw has patiently watched and cheered alongside Nash as he dabbles in soccer, swimming, skiing, karate... Shaw on the other hand does therapy (even though we try to do horseback riding and swimming therapy. That said, we are ALWAYS working on something).

I signed Shaw up for soccer. Why not, right? They just chase after a ball at this age. It's a great way to shake out the wiggles in the sunshine, be like his big brother and run and play and have fun.

Our OT suggested against our choice, stating:
"You will reinforce the wrong muscles to overwork, until we get what we are currently working on corrected." and "It may hurt his self-esteem to be with his peers."  (ouch)

Our ABM Therapist was highly encouraging, saying:
"Active moment and kicking will likely stimulate new paths in his brain and awaken additional brain development."

We weighed the pros and cons and then threw all of the additional input away and made a decision as a parent.... and it was spectacular!!

Shaw's first soccer practice was last Wednesday. I think I cried the whole time. While Nash and I patiently sat on the sidelines, we cheered for Shaw who BEAMED.

I had to pinch myself. I never dreamt this could be a possibility.

Even better... there are 900+ children in this soccer league. Each are grouped into small teams with sweet, animal names and corresponding colored jerseys: the White Foxes, Green Frogs, Blue Horses, Purple Penguins.... you get the drift.

You can imagine my smile when I traced Shaw's name and roster to this...

Beginning Spring on a very positive note.... Anxiously awaiting results and plans but enjoying ourselves in the meantime.


Patrick Chiaroni said...

Lovely family!!!
So nice to read positive thoughts and to see you rare enjoying your new life!!
Happy Easter to the four of you!!!

Danièle and Patrick and JB (who 'll turn 30 on saturday!!!!!!) and laurina

Ali said...

Love this post. I found your blog while our twins were in the NICU and it gave me such hope and has been an inspiration, so thank you for continuing to share your story. Hope you and your family have a blessed and happy Easter!

Lucia Dawkins said...

wowoo- that is crazy- the yellow bees!!!!!! great update-you're a good mommy candace-keep me posted on the dr and thanks for the reminder to stop a procedure if it doesn't feel right for our kiddos-so true but easy to forget. jules

Janina Shubert said...

OMG!Wow... I am so lucky to have met my buddy Shaw! Candace, you are a fantastic mother and your both boys reflect your love and tender care.Go mighty bees!!!
Nina(Kids Club)