Monday, March 23, 2015

I haven’t posted since October?



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:

Anonymous said...

Thanks for the update - was getting worried about you all.

Paul Quinn said...

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