Tuesday, September 08, 2015

Start of School & Health Update!

Well, it seems the new school year has arrived, and Jenelle and her Brother Jack have returned as a new 7th Grader, and High School Freshman!  With the new school year, Jenelle has had some routine follow ups along with some worrisome, and rather surprising news...  Miss Jenelle has lost 21 pounds since her last hospital stay in March!  She left CHOC at 91 pounds (50th Percentile for weight) and on August 31, she weighed in at 71 pounds (7th Percentile) during her follow up with Dr. Idries in Gastroenterology.

I was absolutely stunned that she has lost that much weight.  I suppose because we see her everyday, it's more difficult to see the weight loss, but that evening during bath, I really took notice at her ribs showing under her skin.  Dr. Idries has prescribed Ensure Plus to be added to her meals and will see her again in 3 months.

So, as you can guess, when the body is malnourished... nothing goes well, including seizure control. Luckily, we had a follow up with Dr. Tran two days after Dr. Idries.  Jenelle has been having more cluster seizures than we like to see, but nothing over a minute or more.  She continues to have both Absence, and Complex Partial seizures.  We feel the weight loss could be related to the addition of Zarontin in May, as we immediately noticed a decrease of appetite - however Dr. Tran says that is not a normal side effect for that drug.  She believes that with the 20 pound loss, Jenelle is now being "overdrugged" with seizure meds, which can also lead to more seizures from the body being fatigued.  We both agreed... Jenelle looked very docile and drugged, for lack of better word.

Dr. Tran and I discussed a lot of subtle changes for now to give Jenelle more time to gain weight.  The first change being to lower the Onfi (a sedative drug) to see if Jenelle perks up.  We also may want to lower her Risperdone.  I'll need to check with Jenelle's psychiatrist, Dr. Gudapati for that.  For now, we will keep watch, and Dr. Tran will see her again in December.  Dr. Tran also mentioned the possibility of VNS (Vagus Nerve Stimulator).  This was something that was approved at UCLA shortly after our return to CHOC.  We've been with Dr. Tran for a year now, and now that she knows more about Jenelle, she agrees that the VNS is something to consider.  We won't make a decision on that until December.

So, for now - lots of protein for Jenelle and hopefully we'll put some weight on our girl! Nutrition is key to everything working well!

Oh, and in cleaning out my "piles of stuff" around the house, I found a CD of photos from Give Kids the World with 3 photos we didn't share.  Two photos are of Jenelle's Star in the Castle of Wishes, and one is of our arrival to our cottage. Such fun memories!  Oh, and of course, the traditional first day of school photo!

Please pray for some weight gain for our girl.  That is all for now, I'll keep you posted!

Jenelle's individual star - Daddy wrote her name on it!

Jenelle's star after being "placed" in her constellation.

The Curran Family has arrived in Florida!
1st Day of School 2015-2016!
Jenelle - Grade 7
J.D. - Freshman (Grade 9)

Wednesday, August 12, 2015

Part 8 - The Last and Final Installment about Jenelle's Make A Wish Trip!

It seems only appropriate to post photos from our last day at Give Kids the World Village on they day they announce their 140,000 Family!  Truly an amazing and wonderful place to stay!

On our last day in Florida, we had to check out of our Villa by 11:00 AM, but we were still allowed to hang out on the property until it was time to go to the airport.  While JD and Brett hung out in Amberville playing games, Jenelle and I visited the Village Chapel to spend a few quiet moments together talking with God.

All the time, people give us accolades on how we are amazing with Jenelle, and so very strong.  While I appreciate all of the compliments; I feel so very privileged and blessed to be Jenelle's Mom.  Jenelle loves everyone in her family, but it goes without saying that she and I have a special bond with each other. 

Brett tells me at times, when I leave the house to run to the store, Jenelle will follow me and stand waiting at the garage door after I've left -"Looking for Mommy" as he describes it.  When she manages to get herself out of bed on her own, she makes her way into our room to my side of the bed.  As she gets older, I do the majority of grooming, diaper changes and outfit changes for her.  I was always afraid to have a daughter because I didn't want to endure the usual conflicts all mothers and daughters seem to go through.  And yet, my relationship with Jenelle is so much greater than I ever imagined it.  I can't imagine life without her.

None of us live forever.  After my cancer scare, and with Jenelle's short life expectancy - this fact is all too real to me.  Life is short, and you should live each moment to the fullest.  I'm not afraid to lose Jenelle to death, or that I will die first and leave her behind... I know that someday in the after-life, we will be together and we will have many wonderful memories and stories to share.  In this world I am her voice and she is my blessing.  I thank God every day for choosing me to be her mom.

In the Village Chapel with Jenelle.
 The main reason I applied to Make a Wish, was that I wanted to celebrate our unique family and create some memories to last a lifetime for Jack.  In the end, we got that and more.  I know our amazing Wish Trip helped to make Jenelle's relationship with Brett and Jack even stronger.  Just the other day, I mentioned that Jenelle was going to Grandma's for babysitting for the evening because Brett and I were going out.  Jack said, "Mom, you know I'm old enough to watch Jenelle, why can't I babysit tonight?"  I smiled, and was flattered.  After getting to know his sister for a week in Florida, he now understands her better and in small ways really wants to be an important part of her life.  I answered Jack that while it was a wonderful idea for him to babysit - he may not enjoy changing her diaper! ;)  He too is an amazing kid.

Love this amazing girl!
 The trip home was uneventful.  As mentioned, Jenelle's wheelchair was completely broken, so TSA secured it with tape and checked it in.  Jenelle had an escort to the gate in an American Airlines wheelchair.  She was such a big girl and did well waiting for the flight.
Jenelle waiting for our flight home.

Had to snap a photo of the in flight map as we descended into LAX
because it shows my hometown of Visalia!

We got home late on Thursday evening - ordered pizza and did lots of laundry. At this point, our journey wasn't quite over as we turned around the next day and drove to Las Vegas (Henderson) for Jack's basketball tournament!  The drive there was easy as we left around noon before the heavy Memorial Day traffic.  Jack's team did OK, and we enjoyed staying at a family resort (for team rates!) at Lake Las Vegas!  While we were tired, it did extend our family quality time together just a few days more.
On the way to Las Vegas - Jenelle says, "But we just got home!"

Mommy and Jenelle lounging by the pool.
JD's travel basketball team - Open Gym Premier 14U Blue!

Since being home, I now see subtle changes in Jenelle.  She gets excited now when we get in the car, and even a bit agitated if we stay home for too long.  She seems more curious about things, and loves giving her Daddy and big brother hugs.  She tolerates going to games for JD (basketball if definitely a favorite for her, as long as the noise from the squeaky shoes isn't too loud.)   You can tell that she simply enjoys being with family.  Because of our trip, we have bonded even more than I could have imagined.  We are blessed.

Thank you always to Make a Wish Orange County and Inland Empire and Give Kids the World!  We will never forget your kindness or our amazing trip to Florida!

Thursday, July 09, 2015

Part 7 - Castle of Wishes and Magic Kingdom!

Now we've come to probably our biggest update yet which will give all the wonderful details of our last full day in Florida.  We definitely pushed ourselves to make it a memorable day, and most importantly, it was the day to grant Jenelle's wish to meet Tinker Bell!

We began the day at the Castle of Wishes at Give Kids the World.  At orientation on our first day, Jenelle was given a golden mirror star (approximately two inches wide).  We were told to visit the Star Fairy at the Castle of Wishes during our stay to have Jenelle's star placed in the GKTW galaxy.  We saved this experience for our last full day, and it was one of the most memorable and emotional experiences of our entire trip.

The Castle of Wishes at GKTW has a star on the ceiling for every child that has stayed at GKTW.  Each star has a bar code on back, so they know the name of the child, and galaxy in which is was placed in case it falls off the ceiling.  To date, there are over 130,000 stars on the ceiling in the Castle of Wishes; each star representing a Wish Child.  It was overwhelming to stand and look up at all the stars - an experience I will never quite forget.  It is even more special knowing that one of those stars is for Jenelle and that we can return someday to find it! (The photos really don't do it justice!)

Daddy helping Jenelle make a wish.

Jenelle giving a hug to our volunteer.

Galaxies of stars - each representing a wish child!

Looking up at the "Star Tower", this building was added a few years ago so that more stars could be placed in the Castle of Wishes.  The tower is supposed to last 10 years, but given what it looks like today, they may need to soon build a second tower!

A close up of a galaxy of stars, each with a Wish Child's name.
 After our wish experience with the Star Fairy, we arrived at the front lobby to find our wheel chair rental had been delivered!  It was a perfect fit, and I can't thank Amusement Park Rentals enough for helping us out when Jenelle's wheelchair broke!

Jenelle's New Ride!

If you are ever in Florida - I highly recommend these guys!
We had lunch at Chic fil A, and soon we were headed off to the Magic Kingdom! We quickly learned that the only way to arrive at the Main Gate of the Magic Kingdom was by boat, or monorail - after parking of course!  Our first stop was to see Tinker Bell at City Hall.

Once again, the Genie Pass allowed us fast pass access and I think even some additional time with Tink.  She was adorable and did not disappoint!  When we explained that she was Jenelle's favorite and we were granting her wish to come meet her in Florida; Tink elaborated and told Jenelle had she had been waiting and hoping she would come!  It was fantastic!

Driving in - looks like a popular place to snap a picture!

This is a funny photo - at Disneyland, it is a must to snap a photo in front of the train station by the Mickey Mouse face in Flowers.  A must!  We do it every time and even have to wait for a photographer!  Well, not so much in Florida.  They didn't even have a photo pass person at this location, so we asked a Disney information officer to take our photo and he seemed surprised.  I later figured out that Cinderella's castle is the favorite opening photo in Florida.  Go figure!

Here is Tinker Bell telling Jenelle all about waiting for her visit!

Jenelle was overwhelmed with giggles when we stood her up, and fell into Tink's arms.

Big Hugs for Tink!

It seems even Tinker Bell didn't want to stop hugging Jenelle!

Family photo time with Tink as Jenelle couldn't keep her eyes off her favorite girl.

Like everyone said - Magic Kingdom was similar and different to the Disneyland in Anaheim we know and love.  We found some rides were better in Florida, like Thunder Mountain, and the ride we don't have, Seven Dwarfs Mine - and some were better in California, like Buzz Lightyear, Small World and Space Mountain.

A lot of people had warned that Magic Kingdom was like Disneyland or Steroids, but it really didn't feel that much bigger.  We had one experience that we would rarely have in California - lightning!  As we boarded the Train to take a trip around the park, we heard a huge clap of thunder.  Next thing we know, the conductor tells us that all outdoor rides are closed as they detected lightening in the area!  

From the look of the clouds, you could see a storm was coming!  In an effort to get out of the rain, we took a detour and went to visit the Make a Wish Lounge, which was really no more than a small private waiting area off the side of first aid.  While cooling off and waiting out the storm, we met a Make a Wish family from Canada, and Ireland!  The Canadians were staying on site as their teen daughter only wanted to spend time at the Disney parks.  The family from Ireland had just arrived at Give Kids the World the day before, so we told them about our experience thus far!  

We also had a lot of fun talking with various Disney employees.  Once they found out we were from California (aka Anaheim), some were very chatty asking about Disneyland, and comparing rides.  We actually met a young girl from Irvine, working for Disney during her summer break from college.  It really is a small world after all.

Family selfie while driving Autotopia!

Family photo outside Space Mountain - we like the one in Anaheim better!

Daddy and Jenelle on Buzz Lightyear.

Yep, it's bigger than the one in Anaheim! See the storm clouds behind coming our way.

I know this photo seems fake, but that is the real sky at dusk just over Thunder Mountain after the passing storm.  It was beautiful and surreal.  This was taken at the exit of Thunder Mountain and when Brett asked what I was doing, I said, "I want a photo of this amazing sky!" - a nearby Disney employee overheard me and said, "I wish I could take that photo - the sky is amazing!"  

As nighttime settled in, we found a last minute location in which to watch the firework show.  It was pretty amazing.  We landed at the ice cream store on Main Street after the fireworks while I did some last minute shopping.  Just as I returned to the boys, the Main Street Electrical Parade started.  While Jenelle didn't seem to enjoy the fireworks as much - she LOVED the Electric Parade.  She jumped and giggled and hummed to the music.  At this point, it was getting close to midnight, so we made way back to the entrance, thinking we'd catch a tram to the car, then remembering we needed the monorail.  So similar to home, and so different.

Waiting for fireworks to start.

Family photo of the castle after fireworks!

One last photo at the entrance with Tinker Bell bidding us farewell!
 It was an amazing, exhausting, emotional and memorable day!  We got home around 2:00 AM and immediately fell asleep.  We had to be out of our villa by 11:00 AM the next morning.  Sleep came easy, and I'm sure Jenelle was dreaming of Tink!

Thank you again to Make A Wish Orange County and Inland Empire for this amazing experience, and to Give Kids the World for one of the most memorable experiences ever for this special needs family!

and one last photo.... my favorite...
We love you Tinker Bell!
In our next and last update on this incredible journey; I'll post some final photos of our last day at GKTW, and our trip home.  

Wednesday, July 01, 2015

Part 6 - Kennedy Space Center!

Well, it seems very appropriate somehow that my update about our visit to Kennedy Space Center lands so close to the 4th of July!  What is more American than a huge giant American Flag on the side of a building that shoots rockets into Space?  On Tuesday, May 19 we spent a day of our Make a Wish Trip visiting the Kennedy Space Center.  Brett was just a baby during the first moon landing, and I was yet born, so seeing this was something new for us all to experience.

The weather was really beautiful with no rain forecast until the evening.  Closer to the Atlantic Ocean, it was humid, but cooler.  The drive from Give Kids the World was less than an hour, and we saw lots of wild life along the route.

Kennedy Space Center
So, as you may recall - our day at Universal Studios ended early when Jenelle's wheelchair broke.  I frantically made calls in the area to the local National Seating and Mobility office to no avail.  We decided that we'd simply drive to KSC and rent something with wheels for Jenelle.  Well, even the best of intentions don't always guarantee the best outcome.  Poor Jenelle could only fit into a double stroller as the single stroller was simply too small, and an adult size wheelchair (the only wheelchair available at KSC) was much too big.  She was such a trooper, and with a little help made it through the day.

Only option for Jenelle was a double stroller
as the adult wheelchair rental was too big.

Not fun at all!
Our first stop was a quick visit to the Rocket Garden.  I had some optical illusion fun taking photos, and it was interesting to read up on the history of space travel.  After buying tickets for a VIP bus tour, and checking out the garden, we had a quick lunch.
Rocket Garden
(Objects in Picture are larger in real life)
Our VIP tour began at 1:00 PM, and that is when we realized Kennedy Space Center was much larger than we imagined.  The bus was air conditioned and cool, and while the VIP tour allowed us to get out and take photos as specific sites, we think we probably could have had a similar experience on the regular bus tour.

We toured various launch sites, viewing areas, the main launching pad, the path where rockets go to the launch site, and the Atlantic Ocean!  We saw an alligator, a manatee, a bald eagle and pelicans!  The final stop of our tour left us at the Apollo museum.  We finished the VIP Tour around 3:00 PM which left a little over an hour to view the Shuttle Atlantis exhibit.  All of the exhibits were amazing and informational! Closing time came quickly at 4:00 PM and we missed the opportunity to ride the 3D Launch Experience.

We had a lot of photo opportunities, and got back to the Village early enough to enjoy another evening at Amberville.  Just as we got home, the thunderstorm and rain rolled in.  
Brother and Sister viewing the launch sites.

Selfie gone wrong.
SO much bigger in person!

Helping Jenelle walk around.

My favorite mission patch.

JD in the replica Atlantis Shuttle.

Who's flying this thing anyway?

I would not buy this helmet for him,
but that he could take this photo instead!
It was good to have an early evening as the next day was going to be our last full day with a planned visit to the Magic Kingdom.  On my way home, I found a company that rented child size wheelchairs for a minimal cost.  They even delivered to GKTW, so we were all set!

That is all for now... Happy 4th of July to you and your family - please be safe!

Next update - Magic Kingdom where Jenelle finally meets Tinker Bell! Thank you again to Make A Wish Orange County Inland Empire and GKTW for such an amazing trip!

Tuesday, June 23, 2015

Part 5 - Universal Studios Orlando and Wheelchair Woes!

So after traveling to Florida, adjusting to the heat, and two days at Disney theme parks - our third day we opted for something different - Universal Studios!  In the package of theme park tickets we received from Give Kids the World, we received a 2 Day Park Hopper Pass to Universal Studios Orlando, which has two theme parks - Universal Studios, and Universal's Islands of Adventure.  Both had a portion of their theme park dedicated to the Wizarding World of Harry Potter - so being a Harry Potter buff, I was TOTALLY EXCITED for the day to start!

It was a little difficult to get the boys to wake up that morning, and Jenelle was sitting up in bed giggling, so I took the opportunity to meet Disney Characters on site at Give Kids the World.  Our first visit was with Goofy!  I truly believe he is her new favorite!  We met him in the Castle of Wishes and enjoyed the cool air conditioning.

Meeting Goofy at Give Kids the World!
After spending some photo time with Goofy, we walked over to Julie's Safari Theater to meet Micky Mouse.  On the first day we arrived at GKTW, Jenelle was given a stuffed Mickey Mouse. We brought the toy with us, and Mickey autographed the foot!  Below are some great photos from our time with Mickey - it was special and so very individual because we had all the time in the world.

Special time on stage with Mickey Mouse!

Mickey autographs Jenelle's stuffed toy.
I brought back Breakfast to our villa and found the boys watching TV.  We rallied quickly and hit the road for Universal Studios!  Since it was closing early, we decided to visit the Islands of Adventure park first.  Our first stop was in the Dr. Seuss themed area where we rode rides about the Cat in the Hat, the Sneetches and Red Fish, Blue Fish.  It was pretty hot with no rain in the forecast (I actually think the days with rain were hotter than days without) so before entering Hogsmeade (the Harry Potter Themed village), we stopped to hydrate!

JD chilling after some Dr. Suess rides!

Sweet Jenelle enjoying a cool down
with a shoe photo bomb by JD.
Soon we arrived at Hogsmeade, and this is where JD discovered faster rides than Disneyland!  Just like the Genie Pass with Disney, we had a "Golden Pass" at Universal which worked the same way in allowing us access onto fast pass rides regardless of the time.  The first ride in Hogsmeade was the Dragon Challenge which is a high speed hanging roller coaster with two tracks that intertwine!  JD and I rode the "smoother" track and immediately fell in love with the thrills!  Brett, who sometimes doesn't do well on rides - depending on the ride - rode a second time with JD and even he enjoyed it.

Just outside the Dragon Challenge, I found the Three Broomsticks (which is a restaurant/pub in the book.)  I had to take a photo throwing my "delta" sign (for Tri Delta) in honor of the Delta that hangs above the entrance.  JD thought I was nuts, but took a photo for me anyway.  Once a Tri Delta, always a Tri Delta!

Delta Sighting with Delta Love!
After the Dragon Challenge, we walked to Hogwarts and learned that there was a ride inside the castle.  The ride was called "Harry Potter and the Forbidden Journey" and it was absolutely JD's most favorite ride of the trip.  It was a lot like Star Tours, but in 3D and much more jolting.  Brett was OK riding once, and even I felt a little dizzy after getting off the ride.
Looking up at Hogwarts Castle
While I wanted to walk back and take the Hogwarts Express to the second park and Diagon Alley - the boys wanted to continue through the Islands of Adventure park into Jurassic Park and to ride the Hulk.  No knowing that we were about to experience a delay, I agreed to walk the loop seeing the rest of the park and then onto Diagon Alley.  Unfortunately, we ran into a snafu when Jenelle's wheelchair broke in Jurassic Park shortly after lunch.  And by broke - I mean... the wheel came off her wheelchair and the hubcap was lost forever leaving us unable to repair the chair!

Entrance to the Jurassic Park area - just like the movie!
The Incredible Hulk ride from Jurassic Park.
Big Brother helping his sister walk as we
looked for the hub cap to her wheelchair.
JD and Brett road a roaring rapids type of ride at Jurassic Park, and just as they finished, we had the problem with the wheelchair.  We were getting close to the closing time of the park, and spent a good hour and a half trying to find Jenelle's hub cap.  Unfortunately, we gave up just as security was telling us the park was closing and we had to walk to the exit.  The worst part was that we were at the farthest point from the exit, so it took us literally an hour to get to the main gate.

At that point, we only had two hours left until Universal Studios closed, and we were pretty hot and tired.  We decided not to fret as we had a "two day pass" and decided to relax at Universal City Walk with drinks for Mom and Dad, and ice cream for the kids at Cold Stone.  It was a pretty exhausting experience.

Margaritas at Margaritaville!

Kids relaxing at home after a lot of walking.
Sadly, we didn't make it back to Universal for our second day.  It was truly one of the most exciting (and different) parks we've experienced, and we hope to go back someday (or at least to the park in Hollywood!)  Blast you darn wheel!

GKTW engineers tried unsuccessfully to repair our wheel!
This is a good place to end Part 5 - next up - Kennedy Space Center! Thank you again to Make a Wish Orange County Inland Empire and Give Kids the World for this amazing trip!