Sunday, September 25, 2016

September 15th Update - Almost Finished!

Hello from Ohio!  Still here...but going home tomorrow!  We are just a little ready to all be back together again.  Just a little.  :)

It's me and Elle here this week.  She had her first infusion Tuesday and it went very well.  She even stayed still and calm the whole FOUR hours (with a little help from Zyrtec, crazy but true).  Miracles still happen, people.  Her incision from the surgery had some edema so there was a little difficulty getting the needle in the reservoir initially, but then everything else went perfectly.

We had to stay in the pediatric ICU (PICU) for 24 hours just for observation and we had the most amazing nurses the whole time.  Seriously y'all, God-given nurses.  They cared so much and loved my girl (and me) so well.

We were supposed to be discharged around 9am yesterday but they needed a urine sample as part of the routine work up and somehow she managed to pee everywhere but in the urine bag.  All Tuesday.  All Tuesday night.  And all Wednesday morning until they gave her a huge IV bolus of fluid and finally we got a 5mL bit...juuuuust enough for their needs (and of course, there was a whopping 93mL in her diaper that missed the urine bag - how, I'll never know).  So we got back to our Ohio 'home' around 1:30 just in time to take a little nap and then to go out and enjoy the weather in the downtown area by the river.

By the by, Columbus has a beautiful downtown area.  The weather has been wonderful and we walk and walk and walk and's a super old city with cool old homes everywhere that were built in the 1800's and brick streets and yummy food and great local shops and restaurants everywhere.  And the people are so friendly!  (If you are a non-southerner, please don't take offense by my comments but us southerners generally don't expect an ultra friendliness to strangers when we leave the south, to be honest). But people here are so warm and kind and welcoming.

So this morning we have some speech therapy and some physical therapy and then after lunch and nap, we will go out on the town again for awhile.  :)  Yesterday, Elle's seizures were pretty bad and she was pretty (a lot) grumpy but so far, this morning, she's been a little more cheerful and seizures haven't been quite as bad.  (She slept better last night, so that always helps.)

We fly home tomorrow!  Tomorrow!!  And while, yes, we will be back up for 2 or 3 nights every other week for the next foreseeable future, our big almost-3 week Ohio adventure is finally coming to an end.  And we've made it!! The finish line is in sight.

Thank you for praying.  As the enzymes were being infused into Elle's brain Tuesday, I prayed and prayed that those enzymes would bathe Elle's brain cells and give her life.  It will most likely be a few months before we see any kind of changes in her, but we will pray for immediate changes!!

Thank you for praying for our family - everyone has been doing really well relatively speaking!  I'm sure the re-entry into our norm is going to be a bit of a bumpy ride - please pray that all the girls will be patient with Frazer and me as we will have to divide our attention between the 3 girls.  And pray that Frazer and I will have patience as well!  It's going to be a circus for a few days.  But a good circus because we will all be together again.  Finally.

Also, please pray for the other Batten kiddos that have been getting this medication here in Columbus for the last year and a half.  And pray for the 5 kiddos (Elle is one of the 5) that will be starting it this fall.  It is a huge stress on all the families.  Some are moving, some are commuting.  And please pray for the around 19 kids (I think) that didn't qualify for this round for one reason or another as there were only 5 spots available.  These people are all amazing and wonderful and my heart is broken.  Pain and joy always go together, don't they?

So Elle's next infusion is September 29th.  We will come to Ohio for 3 nights.  Please pray for that trip.

I feel like I could go on and on about details and the comings and goings of things and about certain prayers but Elle's getting restless and mischievous.  :)

God is good.  All the time.  ALL the time.  In joy, I will praise Him.  In pain, I will praise Him.  My heart is raw and open and broken and full and I feel the absolute love and beauty of Jesus.  He is here.  He is truth.  He is life.

Much love!!!

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