Back to School

Just a quick update, Kylie is back to school after being off for a week for the surgery recovery and then Spring Break.  She is doing great and activation for the second CI is scheduled for April 9th. She still has some suture tape behind her left ear that they said would fall off on its own.  I am not in a rush to help pull it off!  The activation is just a few short days away.  Smiley Kylie all the way! 

The only small downside to the surgery is now Kylie really can't hear when she doesn't have her princess ear in.  She did have some residual hearing in her left ear which she no longer has.  So at night when you take the princess ears off she can't hear you say, "I love you!"  It breaks my heart as I used to be able to tell her that from the top of the stairs and she would scream back but now she doesn't hear it. Please don't take that the wrong way, I am very grateful that the technology allows her to hear for 99.7% of her day! 

We are testing out an Aqua case which allows Kylie to wear her CI for baths, swimming etc.  The case seems like an Outterbox case for your iPhone so it is very cool.  It really helps us in engaging in conversation while she is taking a bath (which normally she can't hear us).  Makes the whole process super easy!  She modeled it while covering all the proper parts tonight.  

Her CI processor is in the case that we can put around her arm that is waterproof.  She can submerge herself in water etc. 

On a final note - The question of the night is when will she grow hair under her arm pits.  Seriously she is 6.  So not ready for this!! 

She's on the mend..

We took Kylie to her post-op visit with her surgeon on Tuesday.  He was thrilled by her progress and advised she is healing very well.  She can officially wash her hair/head this Saturday.  A week of no hair washing is quite interesting.  She can resume "normal" activities in about 10 days.  We discussed her going back to school but nervous as she can't run and play, get sweaty, get bumped, fall down etc so we decided to keep her home with more time to recover.

Here is a picture of her and Dr. Telischi.  Kylie made him a robot mask and one for her too. They are both goofballs.

Kylie has finished all her classwork and homework so she decided to make a train with boxes and leftover parts around the house.  It included headlights, wheels etc.  

Grandma also took Kylie to Butterfly World to get a little bit of a break outside of the house.  She loves the birds and the butterflies.  Happy girl for sure!  

Today, along with Grandma she is going to go to school and surprise her friends for about an hour. Today is a half day before Spring Break starts tomorrow.  She's been practicing, "I'm back!"

The Leprechaun Strikes the Lum Househould

One of Kylie's favorite things she remembers about Pre-K, thanks Ms. Grace, is St. Patrick's Day and how the Leprechaun came and messed up the classroom and caused quite the stir! 

Well since Kylie can not go to school the Leprechaun came to her!  She woke up this morning and ran down the stairs and said, "Come Quick, I can't believe this!"

He wrote on her mirror with marker! 

The Leprechaun even painted her nails while she was sleeping (Grandma was checking his work - wink wink)

He flipped her table upside down and then left Minnie Mouse there reading a book about St. Patrick's Day! 

He decorated the kitchen table with flowers and green confetti 

Kylie showing us the mess the Leprechaun made on her floor.  She said, "I just vacuumed it yesterday!" 

The Leprechaun even went potty! 

We hope you have a fantastic St. Patrick's Day.  

THE END.. The Beginning

The End.  No this is the beginning.

Around 2 and half years old we started the process of identifying why Kylie’s speech and vocabulary was not at the level for her age.  What we thought then would be speech therapy sessions and working on flash cards turned into finding out our daughter was deaf and hard of hearing.  She has gone through more hearing tests than you and I have combined, CT Scans, MRIs, ABRs, EKGs, Halter Monitors and therapy sessions. We tried hearing aids in both ears and increased amplifications with not the results needed.  Keep in mind she did all of this while remaining our Smiley Kylie.

We were referred to University of Miami and to look at Cochlear implants as the next option.  Cochlear what?  Although in the beginning the question of why us, crossed our minds many times by this time in the process we quickly embraced the angel we were blessed with raising on earth.  Months of testing ensued to see if Kylie was a candidate for a cochlear implant and papers were prepared for the insurance.  More waiting, months of waiting and several back and forth conversations between University of Miami and our insurance and finally the approval for the cochlear implant for the right side and surgery is scheduled.  Surgery is completed Kylie is doing amazing and we move forward.

But wait, like us doesn’t she need two ways to hear not just one.  More tests, more insurance back and forth and that brings us to today, two years later!.  Surgery day for cochlear implant number 2! 

This is THE END of a process that started 4 years ago.  Kylie now has the equipment she needs to succeed in life.  From this point forward we just need to fine tune and update her implants and immerse her with language, therapy and love to grow and “catch up” to the levels for her age.  This is THE END of something we have spent so much of our time on.  This is the final exhale, the END of the road, the END of the journey. 

Although this is THE END, this is the beginning of a new road and a new journey and one we are so grateful that she has the ability to be on.  We are truly blessed by the amazing doctors, professionals, family and friends that have held our hands, encouraged us, played a role and helped make this all happen for our little girl. 

Now watch out world cause this one is going to take the world by storm!  

Here are some photos from today

 Time for a funny photo with Grandpa and Grandma in the hospital parking lot at 5:30am

 

Kylie and Daddy 

Hospital Gowns - What happened to the back??

Almost time to go back so let's do a funny photo or two 

Transport can I get a quick ride to the Operating Room - Smiles and giggles included

We are out of surgery and resting

All she wanted was to wear 

her cape on the way home.  In my book SuperGirl is very fitting

Resting on the couch at home and hiding a smile

Small kind gestures go a long way!

This evening I was working away while Kylie and Grandma were playing UNO until the doorbell rang.  I wasn’t able to break away from my phone call to go to the door.  However, Kylie came in with this huge bag with a gift inside.  Evan, “the UPS man” (see blog post from the other day) bought Kylie a Minnie Mouse stuffed animal and paint set.  As Evan left Kylie said, “Grandma, he’s my favorite guy!” I am so glad I didn’t go to the door as as I type this I have tears in my eyes.  With all the negative things happening in the world and in your day, stop and smell the roses, express your appreciation and go the extra mile.   There are so many good things that we should be focusing on and I am blown away about this.  There are amazing people in this world that make a difference every day.  Kylie at 6 embraces this motto every day!

To Evan – We so appreciate you and your passion to not only do your job but how you go the extra mile.  I am sure you could just throw the box at the front door and go on your way.  Thank you for making a difference.  We are truly blessed to have you as our UPS man!  As Kylie would say Keep on Smiling and see you tomorrow! (Next time we need a picture of you and Kylie!)

Check - Pre-op Visits Complete

What a day!  Okay I will be a little less dramatic, no one was hurt or injured in our day.  However, after being in the car since 9:30am and just getting back at 4:30 I need a stiff drink or to curl up and bed and cry.

Don’t get me wrong what is about to happen for Kylie is an amazing thing.  She will now have the ability to hear from both ears instead of just one.  This is good.  What is not good is the amount of paperwork you have to sign for a surgery on your child.  Do you remember signing for your first mortgage and the ache in your hand you got?  Imagine that when you sign for surgery except they say things like X could happen and that is a small chance, this could happen, that could happen and having to initial in each area.  The realization of what you just signed for your child could send anyone to the looney house.  I for one am almost there as I held back the tears throughout the appointment.  (Yes I know I am always close to the looney bin so today was no different)

 She's ready!  PEACE!! 

Making Silly Faces

After reviewing all of that with the surgeon, who we LOVE, he spent one on one time with Kylie and asked her if she had any questions.  She asked him a few things and then they decided to take a picture together.  He told her he would see her on Friday and of course she said, “You got it!”

Kylie and Dr. Telischi - She wants to bring her Superwoman Cape to the hospital.  Superheros aren't scared! 

After leaving the surgeons office we headed over to the hospital to do all the pre-work there as well as meet with the anesthesiologist.  Of course the first thing they do at the hospital is what?  Check your IDs, insurance and take your money.  Kylie was fascinated about the cashier at the hospital and asked her how much money she had.  She had her blood pressure checked for the second time in the day.  HELLO is anyone checking Brian and or mine blood pressure, can you get me a gurney I need to lay down?  Kylie, Kylie Kylie does anyone even know our names or are we just there for our numerous signatures and insurance cards?  Kylie even was offered drinks and snacks, while I got writer’s cramp and Brian assisted. 

We have lost our minds!

After getting a complete review by ARNP, Kylie was approved to meet with the anesthesiologist.  Kylie came with some requests.  No needles, well at least until she falls asleep and no shots.  So, the anesthesiologist, made a deal with her, she ordered her pink like cotton candy medicine that doesn’t taste that great and helps lessen your anxiety (AGAIN, hello Dr. do you see me over here breathing in a bag?  I don’t care what it tastes like I am pretty sure I need it STAT!).  Okay so back to Kylie, if she takes this medicine orally the day of surgery the anesthesiologist will give Kylie three stickers.  Kylie said “no, I need four if I take it.”  What a little negotiator she is! Will see what happens on the big day. 

We were cleared and are now ready for the big day!  Homeward bound, did I mention I packed a bag of EVERYTHING Kylie could need and more complete with snacks, games etc.  Ask me how much food I packed for Brian and I?  It’s 3pm and we are now ready to eat crumbs of anything we can find so we are driving home to eat a good meal and not stop to eat something like fast food.  15 miles from home Kylie starts crying and telling me her head hurts and she needs water.  Yep out of that but we are almost home.  I make that awkward maneuver we all have made where while your husband is driving at 75 miles per hour (okay it is Brian driving maybe 65 mph) you move from the front seat to the back seat.   Just in time to catch her ….yes throw up.  She got car sick on the way home and I saved the car. Maybe we were all a little nervous.  After she was done (I didn’t go into details as that would be TMI) she says, “Mom I feel great now.”  Um, Brian can you speed it up now?? 

It was a great day and we are so ready for the next steps to happen on Friday.  For now I just need to exhale and relax.  It’s me Tricia, Relax and Exhale – How do you do that??  

We are at the one week mark!

We are at the one week mark before surgery.  Let's see what we can check off our list:

• We have discussed with Kylie what will happen - Check
• Super girl cape ready for after surgery - Check
• Dog stuffed animal ready for surgery day - Check
• Grandma and Grandpa coming in for surgery- Check 
• Gung Gung and Po Po coming in week after surgery - Check
• Requested Lego toys purchased for a gift if she is good in surgery - Check
• Medical Clearance from Pediatrician - Check
• Blood Work  - Check
• Missed Classwork and Homework discussed with teacher - Check 
• Pre-Op Appointment with Surgeon and Hospital Scheduled for Monday - Pending

 

 Kylie after blood-work with a cookie or two from Cookies by Design!

Can we freak out yet??

Tricia's List

Wine - Check

More Wine - Check Check

Extra Wine - Check Check Check

No Unhealthy snacks nearby - Check

Workouts planned to take mind off 

of the situation - Check

Thank you all.. We are almost there and while so excited nervous about the big day! 

A small smile or a warm hello makes a difference

About every day the UPS man stops at our house, (Focus people the story is not about my online spending habits it just works out nicely that Amazon sells everything!) and every time Kylie runs to the door and greets the UPS man.  You know how it is; you can hear that truck coming down the street.  You know exactly what I am talking about?  Well maybe UPS doesn't frequent your block like mine but I think you get the hint.  

On Monday the truck stopped for a neighbor and Kylie was outside riding her bike. She stopped what she was doing and went to say hello.  Immediately she recognized that this wasn't our usual UPS man.  I would say we have had the same delivery man for the last 2 or 3 years and he always takes the time to say hello to Kylie and ask her how she is doing.  

On Tuesday we were once again outside and once again the truck drove down the street and low and behold our normal UPS man came out.  Kylie said, "What happened to you yesterday, we didn't see you?"  The UPS man (I wish I knew his name) immediately lit up and said, "You noticed I wasn't here?" To which she replied, "I see you everyday what happened?"  I kindly tried to say well he can have a vacation day or maybe he wasn't feeling well. It's not our business why he wasn't here for one day.  He looked at Kylie and I and said, "I lost my father a couple of weeks ago and it has been really hard on me."  I am an emotional person and I almost teared up in the driveway and had a loss of words. Kylie didn't skip a beat and said, "Keep smiling, I look forward to seeing you every day!"  He literally got the largest smile on his face and said, "Thank You Kylie that means a lot to me."

Today as we heard the truck coming around the curve Kylie ran out.  She said I hope he's back again Mom.  While he didn't stop at the house (I am sure Brian is thrilled!), Kylie still went out to say hello and ensure she smiled and spread some cheer.  She said, "Are you having a good day?"  He replied, "Yes" To which she responded, "Hurry home and eat your dinner!!  What are you having??"

You know I don't know how someone so young understands how important it is to stop and smell the roses and to go the extra mile.  I am so proud of her and her drive to make everyone happy and smile.  It really does make a difference in life!