January Recap

Sunday, February 22, 2015

Gah!  Wasn't it just Christmas?

and now here I am writing our January recap....

At the end of February.

I guess it's true what they say, "The days are long, but the years are short."

On New Years Day, John's brother and family drove up from Little Rock.  It had been a year since our girls had seen each other so it was a joyous reunion.  My girls absolutely adore their older cousins.  We had dinner, Mexican at Greg's of course, and then went back to Papa and Nini's house for an intense game of Bonopoly!

Alli is just beginning to eat more and more.  We're still diligently tackling those oral aversions and facial defensiveness, but she's at least sort of accepting the spoon!  This is incredible news, y'all.  And she's even gained a considerable amount of weight.  Between the blenderized diet and taking some oral feeds she is up!  She has been so tough to grow.  

I just love seeing food on her mouth!

Celebrating the 12th Day of Christmas under our tree (also it's last day up).  

The first weekend in January we attended Ava's dance friend, Brooklynn's, No Mo Chemo Party!  You can see her journey at Pray for Brooklynn.  Such a warrior that girl!  

Ava and another dance friend, Jillian, celebrating Brooklynn!

Congratulations Brooklynn and family!

 On the 8th one of our FAVORITE NICU nurses came all the way from Tennessee to visit.  Not entirely true, she has family in the area, but it's always so nice for her to visit.  Our daughter's story can never be told without mentioning her amazing NICU team.  

On January 17 we made our way to Houston for Alli's 6 month stem cell followup.  It's cliche to say, "I can't believe it has been 6 months."

But for real, people, I can't believe it has been 6 months.  

An hour outside of Little Rock, at 9 pm, my car died in the middle of the road.  I can tell you one thing, I will never own another Infiniti.  That sucker has been nothing but trouble since she rolled over 100,000 miles. 

I can't make this night up.  It was a combination of tears and hysterical laughing.  We were towed to a place in Clinton, where we sat in the tow truck company's truck and lot while we waited on my brother in law to pick us up and take us into Little Rock.  This picture was taken as we sat at the tow truck company's lot near midnight waiting on Ralph Ed.  Turns out nothing is open in a small town on a Saturday night (is that a country song?).  And no one will work on an Infiniti.  We got into LR after 1 am Sunday morning and were greeted by two sweet cousins!  What was Anna Claire's "worst night ever," turned out to be a fun excursion.  We rented a minivan early Sunday morning and headed on to Houston.  

Houston or Bust!

AC is in there somewhere, promise.
We made it to Conroe by evening and had dinner at a great little Mexican restaurant.  We met up with John's aunt Joann, Uncle Mike, and their oldest daughter and family.  We're so thankful for all of them!  They have made our days of coming to Houston so fun and I love that our big girls get to connect with their cousins. 
Celebrating our arrival to Houston and the last night we will ever have a 3 year old!
Have you ever had a Jalapeno Margarita?  Well, you should try one!  But, fair warning, the 2 a.m. wake you up heart burn was intense!
We spent our first full day in Houston shopping and playing with cousins.  It was MLK Day so luckily, they were also out of school.  It was also Alli's birthday so we made a trip to Build a Bear (which didn't go over very well for our easily overstimulated little).  She still received a new Olaf so all was then right in the world.

The next day, we made our way to the Medical Center in Houston for Alli's 6 month stem cell follow up.  I'll save the rest for another post (not that I have a lot of info, just logistics).  

That night we celebrated Paiton's 21st Birthday!!  We then had to say goodbye until July when we go back for the 1 year follow up and possible treatment. The girls always have SO much fun together!  Looking forward to a longer stay in the summer!

Back at home, it was back to business as usual.  School, therapy, dance, repeat.  

Ava attended one of her sweet friend's birthday party (where the whole Frozen cast showed up....so fun!!)

Alli's "stank eye" she gives when I pick her up from school.  It's like she is saying, "Where the flip have you been?!?"

At the end of January, Alli had a sleep study.  She is now officially oxygen FREE at night!  No more central and obstructive apnea!!  We have to keep the oxygen in the home for at least another year.  Since she still requires O2 when she is sick and can go down so fast when she is sick, her pulmonolologist felt that merited keeping it in the home.  We will reevaluate in 2016 about discharging her completely! Such a big.big deal and a milestone we thought we might not ever see!

We ended January with a date day to St. Louis for Alli's lung clinic and my appointment with a neurosurgeon at Barnes Jewish.  In December, a venous malformation was discovered on my cerebellum.  What we thought was the worst malformation was ruled the most benign!   It was reviewed again for a second opinion and we received the call last week that it indeed was a DVM, a developmental venous malformation.  

I can't tell you how this felt.  On both sides.  On the one side when I feared the worst and on the opposite side when God knocked my socks off.  I can tell you with great confidence, it all happened for a reason.  

I am so thankful for precious friends who pray with me (and a few even sent me pictures of their ugly cries following this news).  I'm reminded that there is an army ready and waiting to stand beside me and call down heaven.  And for that, I just don't have the words.  God's magnificent presence, precious prayers from friends, the authority to call down heaven.

Priceless gifts, y'all.

2015 has already been amazing.  

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