Saturday, July 18, 2015

Josie's Tonsillectomy: What We Learned

In an attempt to encourage Miss Josie JoJo to take an afternoon snooze, I put her on Mom & Dad's bed and set up my laptop so I could keep her company while blogging.  We just returned home from the hospital yesterday afternoon after a successful tonsillectomy and adenoidectomy. 
 Because of Josie's complicated health history which includes open heart surgery to repair 2 VSD's, chronic lung disease, a G-tube placement and subsequent eating difficulties, what may potentially be an outpatient surgery for some kiddos was a hospital stay for Josie.  The biggest factor in determining when she could go home: demonstration of a willingness to eat and drink post-op.
 Josie is no stranger to the hospital scene and as a result, Travis and I, have learned a lot about advocating for our little patient.  Here are a few tips we can share:
 
1.  Research - Any surgery and hospital stay, no matter how minor, is stressful for both the parent and the child.  I have found that the more information I have going into it, the more comfortable I feel about things.  I searched web pages and YouTube videos about tonsillectomies.  I ordered a children's book about it.  I talked to friends whose children had done it before.  And I was glad I had because I knew what to expect to some degree.  For example, I had a wonderful friend call me the morning of Josie's surgery to warn me that sometimes kids thrash around as the anesthesia wears off and it can be really scary to watch but it's normal.  Boy was I glad she told me that:  Josie thrashed violently for 2 hours!  And it was awful to watch.  But it would have been much scarier had my friend not warned me it could happen. 
 
2.  All Patients Are Different - Just because two people have the same surgery, it doesn't mean they'll have the same recovery.  I talked to a lot of friends whose children had a Tonsillectomy and Adenoidectomy (T&A) prior to Josie's surgery.  Some children were miserable for weeks afterwards, refusing to eat, drink, or take medications; while others woke up ravenous, inhaled a plate of spaghetti, and bounced back like nothing ever happened.  Josie's recovery has been somewhere in between: She has been eating and drinking soft foods at our request and taking medications but you can tell she's not quite herself.  As long as we stay on top of her pain management schedule and administer her medications on time, she doesn't get too uncomfortable/cranky.
 
 
 
 3.  Ask Questions - Most of Josie's hospitalizations in her infancy took place in a teaching hospital that had a medical school affiliation.  It was great because there were tons of fellows, residents, and medical students learning, and the staff physicians were eager to teach and answer questions.  And as stated above, the more information you have, the more comfortable you are.  So ask the doctors what type of procedure is being performed.  Ask about the risks and side effects.  Physicians generally don't like "crystal ball" type questions - for example, my favorite question to ask when Josie was g-tube dependent was when she was going to be able to eat orally.  No one has those answers.  But I found that it helped me to phrase the question like "In your experience with kids her age with Down syndrome, what's the average time frame for a child to use the g-tube?  What variables affect a successful transition to oral feeds?"  If physicians use a word that you don't understand, ask!  If they're describing a condition/procedure you'd like to research further, have them tell you the official "diagnostic term" and write it down so you can Google it and read more about it later.  We've found that medical staff appreciate informed parents who are eager to learn all they can about their child's condition.
 4.  Speak Up! - Travis and I don't have medical degrees but we are the experts when it comes to our children.  I believe people who enter the medical profession do so because they genuinely want to help people.  However doctors, nurses, respiratory therapists, etc are human, too.  They are dealing with a lot of patients with various and complex issues and sometimes things fall through the cracks.  That's why, as parents, we must be vigilant and speak up when something doesn't seem right.  For example, yesterday, Josie was supposed to receive her pain medication at 11am.  By noon, Josie was started to get really irritable and I realized the nurse had never come in the room to give it to her.  So I went out in the hall and found her and requested it. 
 
Admittedly, assertiveness comes easily (sometimes a little too easily) to me.  I realize this isn't the case for everyone.  If you're weary of coming across demanding or disrespectful, perhaps phrasing your concern in the form of a question may help.  Say "This doesn't seem to be providing relief for my child; is there an alternative plan of action we can explore?"  Or "Do you have any suggestions for how we can help my child ____?"  Remind yourself that errors occur in the medical field just like in every other field and it has been proven that parents who advocate for their children receive better medical care. 
I'd like to take this time to thank some people whose support was invaluable to us:
 
1.  Mama Hop and Aunt Leanne - They are always there to help when we need an extra set of hands.  Because of them, Travis and I could both be with Josie at the hospital and know that our other kiddos back home were receiving tons of love, care, and delicious food! 
2.  Family & Friends - Stacey, Kristin, Deanna and everyone else who let me inundate them with questions and concerns regarding this surgery.  I am so very grateful for your guidance.  And to everyone who called and texted to check on our little JoJo, we truly appreciate your support and concern.
 3.  Blog Friends and InstaFriends - I am so proud to be a part of this fun and supportive social media community.  I truly believe that we have a valuable platform to share information, offer support, and change the way the world perceives Down syndrome.  Your kind words and prayers mean the world to us. 

Wednesday, July 15, 2015

Prayer Request

As our precious Josie JoJo prepares to undergo surgery tomorrow, we would love for you to join us in praying for a successful surgery and a speedy recovery. 
Thank you for your love and support!  We'll keep you posted. 

Tuesday, July 14, 2015

Josie's Tonsillectomy - A Social Story

While there is still a series of National Down Syndrome Convention posts planned, we interrupt that topic to address an important event that Josie will face this week: a tonsillectomy and adenoidectomy.  While these surgeries are relatively common in children, especially in children with Down syndrome, it is still a tough experience for a child.  Josie's past feeding difficulties resulting from her g-tube use (click HERE and HERE to read more), make this particular operation even more complicated and intimidating.  A successful recovery is contingent upon her willingness to eat and drink. 
 
As I've done with major life events in the past, I drafted a brief social story to help Josie prepare for the upcoming surgery.
 
I used Microsoft Publisher and incorporated a mixture of photos of Josie as well as generic photos I found on Google images.
 

 

Prepare to be amazed by my graphic design skills.  I know I will receive job offers right and left after the world gets a taste of my Microsoft Publisher "photoshopping": BOOM!
 

 

Wait for it, wait for it...BOOM, AGAIN!

Since food refusals are common in all children post-tonsillectomy, we are preparing ourselves for even more opposition from Josie, as eating is not her favorite pastime and she has a well-documented history of noncompliant mealtime behavior.
 

 
Therefore, this social story places great emphasis on the food consumption.  Josie's ENT said that in order for her to be discharged from the hospital, she has to eat and drink and that one of the most common problems that results from this surgery is dehydration.  We certainly don't want to have to be readmitted for IV fluids.
 
 
The next page employs the very valuable "First (non preferred activity), then (incentive)" statement that we learned in our years of behavioral therapy.  Josie
is very familiar with this idea so I spelled it out simply, with basic pictures because people with Down syndrome are very visual.  
 
We plan to take this booklet to the hospital with us to reiterate this idea after surgery.
While we anticipate some challenges initially after the surgery, we know that this type of surgery has the potential to bring a lot of health improvement to Josie.  She will have a sleep study in August to determine if she is still obstructing and experiencing lower oxygen saturations during sleep.

 
Here at CCE, we are big believers in the power of blogosphere prayers and we welcome and appreciate your prayers on Thursday. 
 
For more updates on Josie's progress, check our Instagram account:


Wednesday, July 8, 2015

Preparing for the National Down Synrome Convention 2015

Every year, the National Down Syndrome Congress hosts a convention where people from all over the country came come to participate in workshops and get the latest information about Down syndrome.  Leading experts in the Down syndrome community give presentations on the how to address the health, educational, social, behavioral, therapeutic, and behavioral needs of individuals with Down syndrome.  This year, it was held in Phoenix, Arizona at the JW Marriott Desert Ridge.  As if the draw of the convention wasn't enough, the lure of the resort and the opportunity to see wonderful friends convinced Travis and I to make this our anniversary getaway. 
 
Fortunately for us, the world's best sister, who happens to also be the world's best aunt, cleared her schedule so she could take care of our kiddos (with a little help from Mama Hop).
 
Leanne's been at this aunt thing for several years now and she's well aware of how much work is involved.  She runs a tight ship!  Within an hour of arriving at our house, she came and found in the girls' closet where I was hanging clothes, and she read the document she'd drafted containing her babysitting "policies" and behavioral expectations.
Leanne and I discussed her compensation for successfully completing this babysitting gig as well as the prospective rewards that compliant children could earn:

With the promise of fun in the sun awaiting, coupled with an experienced and loving babysitter, it was time to get down to the logistics.  Us Type A, neurotic types can only truly relax and have fun once we've scrupulously checked every item off of our list.  I typed up instructions, schedules, emergency contacts, and even a map.  I set aside a laundry basket full of clean, coordinated outfits. 
Then I proceeded to pack for myself.  Since my day-to-day housewife attire falls somewhere between barely presentable and not half bad (if worn during the Clinton administration), I did a little shopping, stood on a chair in front of the bathroom mirror and texted some selfies to a trusted panel of friends.  Baby Lydia even got in on the action and the next thing you know, I temporarily suspended my membership to The Yoga Pants Society. 
Sadly, no amount of organization and planning could prepare me to say goodbye to the sweetest, cuddliest, happiest(as-long-as-mom-is-within-view) baby in the world.  Lydia may only be a year old but she knew something was going on and she turned the clinginess quotient up full blast. 
As heartbreaking as it was to leave my 3 babies, I knew it was an important opportunity to take a break, recharge my batteries, and nurture my marriage.  The girls were in excellent hands and I was off to indulge in a fun-filled weekend at a beautiful resort with my best friend.
 I've been dying to blog about the incredible experience that is the National Down Syndrome Congress Convention.  It was such a awesome weekend jam-packed with so much terrific information that it will undoubtedly require more than one post.  Your patience is appreciated as my parental duties and the subsequent exhaustion that accompanies my parental duties sometimes have a tendency to derail my best intentions to blog.  Can I get an "Amen" from all of my fellow mothers?  Solidarity, sisters.  Solidarity.

Tuesday, June 30, 2015

Leanne Dishes On Her Birthday Date

Leanne recently celebrated a birthday by going out to dinner with the ever-so-handsome Mike (not to be confused with "cute" - he prefers to be referred to as "handsome" and he'll tell you so).  Loyal readers will remember Mike from this post (click HERE).  Here's a photo of the good looking couple outside of the restaurant:
My mom took Leanne out to dinner and she and Mike's mom dined at a separate table to let the couple have their privacy.  I haven't really had a chance to hear about the date directly from Leanne until last night.  And in true Leanne style, the emphasis was on the food, she didn't hesitate to share her thoughts on the wardrobe, and she even gave me the exclusive "don't-tell-mom" details (Mom, this video is off limits):


Thanks, Leanne.  We're so glad you enjoyed your date with that dreamboat of yours!

Stay tuned because I plan to draft a long post (or maybe several posts) about the National Down Syndrome Congress Convention in Phoenix, Arizona.  I just returned and I'm bursting with excitement, fun stories, and good information to share!

Tuesday, June 9, 2015

Defining Perfection

My older sister, Leanne, has Down syndrome so there was never a day in my life that I lived outside of the Down syndrome community.  Down syndrome was as natural to me as breathing.  It was comfortable.  It was familiar.
 
There was never any process where I had to learn to accept Leanne and her diagnosis; she was a part of my family since the day I entered the world and as younger siblings tend to do, I thought my older sibling was the coolest person ever.
 
When I left home and went away to college, I truly missed my sister and the special needs community so I sought out employment and volunteer options that would allow me to remain involved with individuals with special needs. 
Being a part of the Down syndrome community was such a positive experience for me that when it came time to start a family of my own, adopting a baby with Down syndrome felt like the natural place to start.
Call me na├»ve, but it really wasn't until I re-entered the special needs community as a parent, that I realized how many people did not share my overwhelmingly positive impression of individuals with disabilities. 
 
It was hurtful to experience the negative attitudes that exist out there.  So many people still see individuals like my sister and daughter as flawed; like they somehow fall short of what constitutes an ideal human being.  It's as though society has this standard of perfection and Leanne and Josie don't meet it.

 
And it's really hard for me to accept this attitude.  I can't accept it.  I don't accept it.  Here's why: because I KNOW better!  Trust me, in this life, there are more questions than there are answers but this is one thing that I can speak of with 100% certainty: People with special needs are made in God's image, purposefully created exactly as He intended them to be.  And just like everyone else, people with special needs have strengths, weaknesses, and gifts to share with the world. 
 
My sister and my daughter are not genetic blunders.  They do not represent an unfulfilled promise of a perfect human being.  They are exactly who they were created to be and they deserve acceptance and appreciation. 
 
Who determines what "perfection" is anyway?  What does perfect skin look like?  What is the ideal eye color and shape?  What should the perfect voice sound like?  What length, color, and texture comprise the perfect hair?  The answers to these questions are both subjective and insignificant.  And if you spend your time dwelling on these qualities, you're missing out on the truly important qualities that people have to offer.
 You know who could care less about superficial ideals of perfection?  Leanne.  With everyone she meets, she defaults to love and acceptance.  You drive a junky car?  She doesn't care.  Your clothes aren't designer?  She could care less.  You don't have a prestigious education and a glamorous career?  That doesn't make you the least bit inferior in her book. 
 
You use a wheelchair because your legs are paralyzed?  She might be curious as to why you're in a wheelchair.  She'll probably ask.  And when you respond, she will accept it and move on without pity or judgment.  If you need help, she'll be the first to jump up and help you.  Just like she'd help anyone.  Because she is a sincere, kind, and open-hearted person.
 
We all know what a ridiculously materialistic rat race this world can be.  That's why it's so refreshing to be able to get away from that nonsense and hang out with people who are genuine; people who are not afraid to be themselves. How wonderful would it be to walk into a room and know that everyone automatically defaults to accepting and appreciating you?
 
That's what it's like to grow up in the special needs community.  That's an opportunity that I'm thrilled to be able to offer to my daughters.  That's a view of the world I wish everyone could experience.  That's how I KNOW that Leanne and Josie are perfect just the way they are, and that life is better because they're in it.


Sunday, June 7, 2015

The Big Move

Greetings Everybody!  Don't you just hate it when you go to check a blog and it hasn't been updated in forever?!  And you wonder if said bloggers are still alive and what the heck they've been up to that has them MIA.  Well, don't give up on us just yet.  We have a good excuse: We moved! 
As if our day-to-day responsibilities with three children five and under aren't enough, we get to unpack, sort, purge, organize, and repeat.  And just when I think that I'm done with one room, Travis appears from the basement with yet another box he found! 
 Fortunately for us, we have had help!  YaYa and Papa (Travis' parents) came and helped with unpacking, organizing, and various other tasks as requested...like baby gate installation.  We can't underestimate the importance of that!
 Needless to say, there wasn't a lot of time for photography amidst the chaos of moving but I did manage to grab the all-important YaYa & Papa with their granddaughters photo:
As always, my children were cooperative little angels.  YaYa, go ahead and send us your chiropractor bill.  Given the amount of times per day that Josie performs this little stunt, we could probably keep a chiropractor in business full time.
The new house is coming together as quickly as it can, given our circumstances.  While we're not exactly ready to post a house tour (remind me in a few years or so, okay?), it's with enormous excitement that we post a couple of pictures of the most fun feature of the home:
 A little playhouse under the stairs!
I'm going to go ahead and speak audaciously on behalf of my gender when I say, this is every little girl's dream!  It took quite a bit of persuasion to convince Travis to get on board with this idea - he was adamant that the space under the stairs was for luggage storage.  Period.  But, he can only resist for so long.  He's substantially outnumbered, after all! 
Back to the moving process...As he tends to do, Travis embarked upon an international business trip the week after we moved in.  While this time was a little easier than last time because I am more familiar with the area and I have a little bit of help, said "help" all go to the same college where it happened to be finals week.  We've got great timing, right?  So while our beloved sitters were focusing on their scholarly endeavors, Mama Hop and Aunt Leanne benevolently stepped up to the plate.
 That mother and sister of mine (along with that Aleve PM my mom brought) managed to see to it that we made it through Travis' absence and got a little more unpacking accomplished.
 And in exchange for the hours of unpacking, laundry, and childcare they provided, I made sure Mama Hop and Aunt Leanne feasted on one of my famous "home cooked" Bertolli frozen diners:
 Just look at Aunt Leanne's enthusiastic fist pumping!  She is my favorite person in the world to feed because even if I microwave a Lean Cuisine for her, she tells me I'm "the best cook".  And I ignore the fact that she uses this line on everyone who prepares her a meal of any sort.  I just relish in the culinary compliment as they are rather infrequent in my world!
 Let's see...what else have we been up to this month?  Well, both girls wrapped up their first year of preschool.  Merryn is enrolled in a summer enrichment program at her preschool while Josie is enrolled in "the Summer of Indepedence" program (AKA "Mom's Boot Camp").  Goals for Josie primarily center around self-care skills and transitioning from needing physical assistance and verbal prompts to fully independent toileting, self-dressing, and general mobility (stairs, climbing into her chair, carseat, etc).  These goals are rather ambitious, however, we are bound and determined to make as much progress as possible.  Hell hath no fury like a determined mom with an aching back!  Josie is stubborn but I am committed to out-stubborning her.  In fact, that's one of my major goals in life.
We also managed to squeeze in a visit with Elmo and Ernie ...
 ...and celebrate one year of Baby Lydia! 
It seems like just yesterday that Baby Number 3 made her grand entrance, and yet so much has happened in the past year for our family.  And the beauty of Miss Lydia's sweet temperament is that she has handled the pandemonium of having three residences in one year with such gentle grace.  She has been a delightful addition to our crazy circus. 
Her special day consisted of a birthday banner colored by her sister, attending her sister's swimming lessons, enjoying a lunch of her favorite food: spaghetti, and a dinner at everyone's favorite place: The Olive Garden.  Of course she enjoyed gifts, her first taste of cake, and a FaceTime birthday serenade by Mama Hop and Aunt Leanne.
And that, my friends, is the month of May 2015 in a nutshell.  One of my goals as we get more and more settled in, is to blog more often so stay tuned and keep nagging me.  In the meantime, get loads of photos and brief daily updates on our Instagram account: @CatfishWithKetchup.