Yep!

That's right. Ava Gray is coming home today (after stopping by the Blanco's for Lily's baby shower: hurray for new cousins!). Pictures? Oh, yes...that's right. I'll try to send some tonight. Thankful, friends. Oh so thankful.

-Jules

Pure Conjecture...

Hey dear friends & fam,

Have not heard anything official about when they might discharge Ava Gray, but we're thinking it might be as early as this morning (she had 3 seizures yesterday, and another decent one after midnight: that might be enough). We'll keep you posted. Excited about the possibility of our sweet AG getting to come home again! 

-Jules

A Little Longer

Friends & Fam,

Thanks for praying for all those things. Ava Gray did have another episode this morning around 5:30am. When they looked at her EEG, they determined that it was a seizure. Now they've asked us to stay for at least another night (and possibly through the weekend), so that they can capture a few more episodes (They're hoping for 4-5 total). The reason? For little ones like Ava Gray, there can be more than one place in the brain that the seizures are coming from. They want to make sure they know all the loci points for her seizures, so that they can prescribe the right type of anti-seizure med(s) for her when we're done with this observation. 

So far God has been graciously providing a lot of support and care for all of us (through friends & the Blanco family). As a parent has to be with Ava Gray at all times, I've spend mostly days here (& nights back at home with Havyn), while Jonathan has been working during the day and staying at the hospital for some of the nights. We're all tired, but persevering, and the girls are hanging in there like the little troopers they are. : ) 

Will be keeping you all posted!

-Julie

Ava Gray & God doing things their own way.....

Friends,

Not sure how to update you all succinctly. I'm a little confused myself about what's happening here....Let me start with the blog entry I wrote right before we brought Ava Gray to the hospital on Tuesday (for those who aren't yet up-to-date):

Ava Gray's seizures have been hard to keep under control. About once a month she "grows out of " her current levels of medication and then we have to get her blood drawn to find out where the levels are so we can safely increase them again. The volume of the "better" medications is finally so great, that they're asking us to admit Ava Gray in the EMU (Epilepsy Monitoring Unit) so that they can monitor & record her seizure activity while she's hooked up to an EEG machine. (The purpose of this is to help them figure out where in the brain the seizure activity is coming from and therefore what type of medication would best help her).  Her admission to the EMU is scheduled for tomorrow at 2pm. After she is admitted and hooked up to the machine, they will temporarily take her off her seizure medications and then I will be pressing a button every time she has a seizure. Tomorrow night may very well be a long one. Please pray for her (for peace - that she would not experience a lot of fear during her seizures), and for me (that I would also not experience a lot of fear, and for endurance). 

Here's what's happened since then: The medical team kept her on her regular meds throughout the first afternoon and night (Maybe to capture her baseline brain activity?). So instead of it being a super-stressful night of no sleep, it was a relaxing night of more sleep than usual (thanks to friends who kept Havyn at home). Bam. PRAYER ANSWERED ! The next morning, they decreased her dose of one medication but left the other medication the same.  Since then she's had one or two small seizures (20 or 30 seconds at most). Here's the crazy thing: when they went back to look at her brain activity during these "seizure" episodes, there was no seizure activity going on in the brain. That could mean one of two things:

1. We haven't captured an actual seizure yet (her more serious ones include her not breathing for a minute or more, her SATs dropping down incredibly low, and her face turning blue or grey while her gaze is fixed). 

2. What we've thought were seizures this whole time, were (and are) actually something else. Our nurse today told us that about 50% of the kids who come in with what the parents think are seizures, are actually a severe (fear) response to acid reflux and the chronic vomiting that goes along with that. Ava Gray sure has had her struggles with emesis and keeping food down, so that's definitely within the realm of possibility. 

We're asking for prayer on a few fronts: 1. That unless God is choosing to heal her here and now, that Ava Gray would have a more serious "episode" while she's hooked up to the EEG, so we can determine if she is actually having seizures or not. 2. That if the team makes the determination that these are NOT seizures, that they would take her off her anti-seizure meds while she's still there under their watch. 3. For wisdom & endurance during Ava Gray's stay at the hospital (sleep for all parties involved, and for the girls to be sheltered from the strain of hospital-life). 4. That if this is GI related instead of seizure activity, that God would show us how to care for her and help her. 5. Most importantly, for Ava Gray's complete healing.

I apologize for the length of this email. Forgive the babbling of a tired mama. : ) And bless you guys for your prayers. Not the first time I feel carried by invisible arms through stormy weather. Hope you're all having a good night! 

-Jules

Sunny Skies & California Fam

A few weeks ago, Havyn & I had the opportunity to fly back to California (along with my good friend Kristina) to visit family there. The trip had been planned with Ava Gray in mind as well, but as the date drew close we (reluctantly) came to the realization that it would be too great a risk to take her such a long way from her support team. (The nearest children's hospital in the town we were headed to was 3 hours away - yikes!) Loving friends (& nurses) talked me into going ahead with the trip, and leaving Ava Gray in their compassionate & capable hands while I was away. While it was definitely difficult to leave Ava Gray for such a long period, I am so glad we went. I have incredible family & friends out West that I always miss terribly, and it was really good to reconnect with many of them again. (Missed you Brian & Susan & Rosie!). Here's some pics & stories from our time out there:

The park was a 3 minute walk from the house. Havyn just loved the California slides!

And the California dogs. : )

And her California cousins♥

Dear friends traveled for hours (with their little ones in tow) so we could spend some time together. It was really good to see them, and super-fun to see all the kiddos in action.

(You'll notice that there are a few people missing in the picture above and below: namely, Havyn & I. I kept putting Havyn to bed, and accidentally putting myself to bed too. Sigh...)

My awesome brother & sister & law sure know how to party with boys!

And proof that I was (finally) able to put Havyn down without falling asleep myself. : )

Aaaand then, back to the park! We got to see some of our dear CA friends there at the there on Sunday afternoon. It was really sweet to be with those folk, and to let Havyn meet them as well. Sure was missing Ava Gray!

Tumbling (Nash-style):

And tumbling (Cali-style):

Havyn & Ava Gray's CA cousins are extremely athletic. Check out Jude and his soccer ball right behind us...

My brother, Tim: just being a neato dad with his two wild and adorable kiddos.

I'd already fallen in love with my nephew Jude, but this was the first time I got to really hang with his little brother Eli. Yup. I'm officially smitten : )

Story time. Oh, but I loved getting to see those two boys!

Downtown Paso. Pretty, ain't it?

(Well it might be pretty, but there are some tough characters that frequent the place! -  Do. Not. Mess. With. These. Cousins!) : ) 

A local coffeeshop that doesn't mind if your kid runs around like a banshee after drinking chocolate milk for the first time in her life. : )

It was so encouraging to see Tim & Jill parenting amidst the chaos of toddlerhood. It did my heart good. : ) Really, it did.

A happy Havster:

Havyn: sorta freaking out about how much she loves chocolate milk.

Trying to inhale the fumes after the chocolate milk is gone...

Ah, sweet girl...

One of the highlights from our trip was getting to attend Jude's 3rd birthday party. I remember when he was barely sitting up, and the feeling of awe and wonder I experienced,  realizing how much we siblings loved our new (1st!) little nephew. Happy Birthday Jude!

My beautiful (inside & out!) sister-in-law, Jill:

Here's Havyn sporting a hat my mom got her. She wore it for all of like 3 seconds. (Sorry mom!)

Kristina sharing one of her songs at the church service on Sunday.

Havyn, very much NOT listening to the children's sermon (tho I'm sure it was great, UB!)

My dear UB & AJ (Uncle Bill & Aunt Joyce) graciously allowed us to stay in their home while they went road-tripping around the globe. I have so many sweet memories of that place: it was really special to see Havyn running around & enjoying it too.

And what better place for Havyn to get her 1st haircut, than at the Hawks? She sat very still (because she was entranced with Kristina's Kindle Fire.) Bless you KP.

The weather was beautiful while we were there. I'd forgotten just how spectacular CA skies can be...

On our last day there, we got spend several luxurious hours at mom & Carl's ranch. It was serene, and cozy, and relaxing, and fun, and I wish Nashville were just right over the hill, because I would love to visit this place at least once a week with my girls. (Havyn absolutely loved the chickens and the cat and the dog and the horses and the cows, etc. - A toddler's paradise!) I loved seeing Havyn enjoy her grandparents so. They are precious people, and we miss em' terribly when we're back here in Nashville...

I have not yet mentioned "Dee-Da" (Aunt Linda). She is my most favoritist person, and she adores all of her nieces and nephews equally. They also adore her (She is just magical with children). She let us stay at her place (Thanks Linda & Tess!) the first few days. It was tight quarters, but one of my favorite parts of the trip - just being there with my sister.

Dee-Da, Havyn, and horse. : )

Papa Carl (Grandpa) & a view of their grapevine-shaded arbor. They had so many sweet little nooks and crannies all over the property. Such a fun place to hang out!

Dee-Da helping Havyn track down the cat (who was trying to hide from all the toddlers, I'm sure!)

Awww....

Aiya (Grandma) & Havyn. Just keeping an eye on things.

And...farm equipment.

(The allure was not lost on KP, who couldn't resist crawling into the bulldozer)

Another one of those "nooks" where you can just hang out and enjoy the view....

The chicken coop was Havyn's favorite part of the ranch. She couldn't stay away. (They are really pretty chickens - and so friendly.)

Trying to get a better look...

Trying to coax the cat out again.

Another really fun part of the day was when we all jumped into the back of the farm truck and took a tour of the property. Yee-ha!

Eli & Tim, manning the cab :)

(Oof, I can't stand it: such a cutie!)

A hipster on the farm : )

Havyn's "truck" face:

Once we got back to the house, Havyn was all about the chicken coop again (and spending time with her Grandma Aiya). So sweet.

Mom & Havyn exploring.

("Can we see the chicken's again, grandma Aiya?")

Havyn helping her cousin out, and Eli trying to be gracious about it : )

Ice pops - yummmm!

Hanging out under the grapevines...

Storytime with the boys ♥

Two more things Havyn loves: dogs. Papa Carl.

Oh, and helpful cousins who will give you a good push on the swing...

This picture may look staged. It totally was. : ) 3 hungry and active toddlers sitting still for an entire meal? Not a chance. I think this lasted for like 20 seconds before everybody took off running and/or started stealing each others' food. Good times. Good times.

Oh, and a few shots of our "15 minutes at the beach" (from the day before) - Havyn wasn't impressed with the icy-cold ocean, but she sure did love digging around in the sand! (Thank you Uncle Earl and Aunt Alyce for our trip up the coast. Time with you two is always a treasure).

And lastly, a picture of the little girl we missed like crazy and couldn't wait to come home to: 

There are so many more stories that I wish I had time to tell, but to sum it all up: I can't wait to visit CA again. (Though traveling with a toddler is no joke - Tim & Jill, you guys are rock stars to have come out here TWICE. Love you two!) I hope & pray that next time we go, that Ava Gray gets to join us. To all the folk who sacrificed so that we could come out, thank you!! It was such a  precious gift.