Where
has the time gone? Here’s an update. I will try to be concise, but a lot has
happened.
October:
Trip
to the pumpkin patch.
Happy
Halloween! Elsa and Olaf had a great
time and raked in lots of candy.
November:
Happy
Thanksgiving! AJ and I got to go to Ella’s
school for a special Thanksgiving lunch!
December:
The
fantastic news about December is that on December 9th our precious
boy turned the big 1 year old! The next
day, on December 10th, he took his first steps.
Unfortunately
in December Ella had to be hospitalized for 4 days due to an infection. It was a really crummy way to start the
Christmas season, but we are thankful it wasn’t more serious.
For
several days she had a wound on top of her middle finger of her left hand. In wrapping the finger (since it’s
contracted) the wraps accidentally released the bottom of her finger and
created a new, deeper wound. The top
wound healed completely fine, but the bottom wound was being more
stubborn. Before I knew it her entire
finger was red and swollen and very sore (she even asked her aide to do her
writing at school). I decided it was
time to call her pediatrician to get some oral antibiotics…or so I
thought. I took her in and our
pediatrician took one look at her finger and sent us to the hospital. I tried to talk our way out of it (no one
wants to be in the hospital 2 weeks before Christmas and we had 3 very exciting
events coming up that week), but our ped told me that it was time.
We
were all disappointed that this had to happen, but the truth is that it’s
pretty amazing that Ella has made it 7 ½ years without a hospitalization due to
infection (other than when she was born and surgeries). The truth is, we have been preparing for this
for 7 years. We knew that it was just a
matter of time. The question was never IF
Ella would be hospitalized due to infection…the question was WHEN it
would happen. I have a complete IV kit
in my car taped to her car seat with step by step directions on how to place an
IV with little damage to her skin. I
have bags of emergency bandage change kits, so that when this happens I can
just grab a couple and know that everything I need to change her bandages is in
that bag.
We
went to a new hospital that has never treated Ella before, so that made us even
more nervous. Our awesome ped called
ahead of time and prepared them for our arrival. She pretty much told them to do whatever I
say…and they did. They didn’t lay a
finger on Ella without listening to every single word I had to say. In placing her IV they followed my step by
step instructions. Once we were
admitted they immediately came to me and got phone numbers for the EB nurse,
Ella’s EB doctors, and the Cincinnati Children’s Hospital EB clinic.
Ella
was a trooper through it all (as though we would expect anything less). The most annoying part for Ella was that she
felt completely fine. In her mind, you
only go to the hospital if you’re really sick, having surgery, or having a
baby. She was none of those things, so
she had a hard time understanding why she had to be in the hospital. She was quarantined, which meant she wasn’t
allowed to leave her hospital room.
She was bored out of her mind, but several friends and family sent her
games, books and crafts to keep her busy.
A special organization called The Butterfly Fund had sent Ella an iPod
Touch for Christmas. As a special treat
we let her have it early. It definitely
helped pass the hours in the hospital.
Unfortunately
her hospitalization meant that we had to cancel AJ’s first birthday party. I promised him that he would get a big
birthday party when he’s older. At least
at 1 he doesn’t really know what he was missing out on. That said, mommy guilt has definitely kicked
in. The poor kid didn’t even get to have
his first cupcake. I’m debating on
whether or not to throw him a half-birthday party.
While
we were admitted, our friends made sure we were ok and that everything was
taken care of at home. Several of our
amazing friends from church watched AJ until Grammy Janet could get down here. One friend even came over to our house and
picked up Janet when she arrived, and drove her to our other friends who were
watching AJ so that Grammy wouldn’t have to drive to a new place alone. Several people came to the hospital with
toys, games, food, coffee (good coffee…not hospital coffee), and just kept us
company. We have the most incredible
church full of the most incredible people.
Joe and I are constantly in awe of how they show God’s love to us.
Ella
was in the hospital for 4 days and finally released at 11 pm on Saturday
December 13th. Her hospital
stay also meant that we missed our tickets for our favorite event of the
Christmas season…The Living Christmas Tree.
Ella was devastated. There were 2
more performances for Sunday December 14th, so I called in a favor
and thankfully we were able to go see the last performance.
On
Tuesday December 16th Ella and I headed to McLean, VA to see her
favorite singers in concert, Keith and Kristyn Getty. A special friend hooked us up with FRONT ROW
tickets! It was awesome. Ella loved seeing them in concert again, and at
the end Kristyn even looked at Ella and waved.
She obviously remembered her from when we met them at Easter.
On
December 13th at 2:30 am I lost my last living grandparent. Maw Maw (my paternal grandmother) passed away
peacefully with my parents by her side.
At 97 years old she had lived a long and fruitful life. We miss her greatly, but know that she was
ready to pass on. I was able to fly to
Shreveport, LA the weekend of December 19-21 and spend the weekend with my
family as we said our goodbyes.
We
spent Christmas day at home in the morning and had Christmas dinner with
friends in the afternoon. It was a great
day! Ella got the main thing she had
been begging for…a Cotton Candy Machine.
We made 2 batches that morning and both were delicious. Fortunately the machine didn’t coat my house
in spun sugar, as I had feared.
On
the 26th we packed up the car and headed south to Disney World. We spent the night with my cousin then
started our 9 hour trek on the morning of the 27th. Unfortunately, it seemed as though everyone
on the east coast was heading to Orlando.
A trip that was supposed to take 9 hours ended up taking 15 ½. It took us 3 ½ hours to drive 90 miles! Needless to say, we have decided that we are
NOT fans of South Carolina and their 2 lane highway. The second we hit the Georgia border, the
highway turned into 3 lanes and the traffic started flowing. At this point both kids were in complete
meltdown mode, and Joe and I were in desperate need of a break. So we pulled over to the first place we saw…a
Kroger grocery store. We got out, went
to the bathroom (changed AJ) and walked around the grocery store for a good 30
minutes. We picked out whatever we
wanted for dinner before heading back to the car. Once we were back in the car we started
chowing down. After getting some food in
our bellies, we were all much happier.
Soon the kids were fast asleep.
We
finally pulled into the resort at 12:30 am.
Boy, were we glad to finally be there!
Despite
our fatigue, we woke up bright and early the next morning and headed to Epcot. I hadn’t been to Epcot since I was in 7th
grade, so it was all a blur. The only
thing I really remember is that my dad wanted to eat lunch in Germany. Joe and the kids had never been before.
Ella
had heard all about the ride Soarin’ and was insistent that we ride that ride
first. It was just as awesome as
expected. We all loved it! Epcot was a great day. It wasn’t too crowded so we were able to make
our way around the park easily and see all that we wanted to see. That night we headed back to the house to
meet up with the rest of the Murray clan.
Dinner was a great time of catching up and letting the cousins play.
Monday
was spent at Magic Kingdom. The last 2
times we have been to MK was during the week of Christmas…arguably the busiest
week of the year. This year was just as
crowded. Ella had 1 wish in visiting MK…eat
dinner at the Be Out Guest Restaurant.
Reservations were completely booked, but they have open seating for
lunch. We stood in line for over an
hour, but were finally able to go in and eat.
Ella enjoyed her cupcake topped with “the gray stuff.”
Tuesday
was our relaxing day. Family photos were
taken and we just hung out around the pool.
Wednesday
we headed over to Hollywood Studios. I
know people go to Orlando mainly for Magic Kingdom, but I have to say that both
times we have gone to Orlando we have had the most fun at Hollywood Studios. SO MUCH FUN!
If you’re ever planning a trip to Orlando, you have to spend a day at
Hollywood Studios! We got to see the
Frozen Sing-Along show, which was something Ella had been looking forward to
for months! But the highlight of the day
(week) was when Ella got to go to Padawan Training Academy and was able to
fight the REAL Darth Vader! I almost
think Joe was more excited about this than Ella was! She was so proud of herself and said that she
knew she could beat him. The best part
was that the Master Jedi who was leading the training academy, was a woman. Ella was thrilled to see that girls can be
Master Jedi’s too. Afterward she went to
the gift shop and built a special light saber for AJ. Since Ella already had 2 at home, she knew
she didn’t need another one. But she
also knew that young Luke (as she likes to call him) would definitely need one
for when he gets older.
We
headed home Friday afternoon. It was
such a great week hanging out with all of the Murray family. We always leave wishing everyone lived closer
to each other.
January:
In
January we flew to Texas for a quick trip to surprise my maternal side of the
family during their annual Christmas party.
They hadn’t met AJ yet, or seen Ella in several years, so it was a fun
trip. I think Ella's favorite part was getting to meet her new cousin, Ava.
I
can’t neglect to mention that on January 8th (Elvis’ Birthday) AJ
and I, and some other Elvis loving friends, went to Chuy’s Restaurant for
lunch. We had heard that if you come
dressed up like Elvis then you will get a free meal. Let’s just say that AJ got a free lunch.
Also
in January Ella got to participate in her first Pinewood Derby with the GA’s
and RA’s at church. It was a lot of
fun! Her car came in 2nd in
both heats it participated in. Next year
we’ll have to do more planning on how to make her car faster.
During
January and February Ella participated in her school Chess Club. It was a great activity for her that she
really enjoyed. It’s often hard to find
extra-curricular activities appropriate for Ella, so we were really excited to
see this on the list of after school clubs.
February:
Not
much happened in February. We spent most
of the month recovering from our busy December and beginning of January. I did get to go on our church Women’s
Retreat, which was a lot of fun. I didn’t
think I was going to get to go, so it was awesome that God unexpectedly opened
that door.
March:
So
far March has been off to a good start.
Joe got to go on the Men’s Retreat, which I know was a good time for
him. Ella and I got to attend the GA Tea
and have a special girls night out to go see Cinderella. As we were leaving the theatre Ella said, “Mom,
that is definitely a movie we have to have for home!”
Ok,
so I think you’re caught up. I will
honestly try to do better. Most of my
days are spent either running around town, or chasing AJ around the house. Nap time is when I get to catch up on little
things like taking a shower or washing the dishes.
Both
kids are doing fantastic. AJ is quite
the pistol. He’s walking all over the
place and he recently learned how to flush the toilet. We decided to be proactive and put locks on
the toilets before we have to spend $1000 paying a plumber to come get whatever
AJ decided to flush. Ella is doing
great. She lost a lot of weight between
her hospital stay and a nasty stomach bug that went around our house, but we’ve
finally started getting some meat back on her bones. She loves to read and is becoming a very good
story teller on her own. Math is a
struggle, but we’re working on it.
Spring Break is coming up, so hopefully we'll have some fun activities to share during that week.
2 comments:
Thanks for the update - was getting worried about you all.
Yes, that is amazing. Not a lot of kids have that level of resilence, considering the circumstances. Still, it's a good thing that you finally made the decision to bring your kid to the proper medical authorities. That's the least one can do to ensure not only her survival, but also her improved well-being. And it is really nice that she held on and kept strong.
Paul Quinn @ MedCare Pediatric
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