Friday, February 7, 2014

The Lowdown

Friends, I owe you an update - yes I do.  Stick with me and I promise you lots of photos!  It's been a crazy few months as always, but we have survived.  Praying winter ends soon, though.  I am craving some sunshine and warmer weather - as are the children!!

In my last post, I told you about Ulysses and I'm happy to report that during the Angel Tree period, he had over $1000 added to his Reece's Rainbow fund!  Now, we just have to find his family!!  Thank you to all who supported him!

December brought winter and Christmas!  This was our very first Holiday Season completely and totally outside of the hospital.  Seriously, folks, this was foreign territory for us.  I was on pins and needles waiting for the other shoe to drop.  We were knee-deep in a medication wean, all the kids were healthy, I had a hard time believing everything was just going to be....NORMAL.  But, it was and it was great!

January brought frigid temperatures and bit more insanity spirit to the house. While it was good for the kids to return to school and for everyone to try and get back into their routines, not having an outlet for our pent-up energy proved challenging.

Esen has been struggling with school...A LOT.  We're amping up his PT/OT sessions to weekly and extending them to 3 hours to make them more intensive.  He's also undergoing some more evaluations to see if additional services might be beneficial.  Academically, he rocks, but socially/emotionally, he has a hard time holding it together.

Miss Noodle gave us quite a
scare toward the end of January when she took her very first helicopter ride.  On a Sunday morning, she started seizing and it went on for quite a long time.  Her rescue medication did not stop it.  We called 911 immediately since we are in a remote area and response times are long.  We have first responders who are very kind and sweet, but unfortunately are not super helpful in a real emergency.  They are very limited to what they can do.  In this situation, they can put an oxygen mask on her, gather all of the info for the Paramedics and basically stay out of my way so I can treat her and prepare her for transport.  By the time Paramedics arrived 30 minutes after our 911 call, I had accessed her metaport for venous access, spoken to her neurosurgeon and neurologist and had everything ready to go.  The decision was made to transport her to the local hospital and immediately transfer her via MedFlight to our Children's Hospital in Madison.   The entire process took 2 1/2 hours!
This, my friends, is why I am so very old.  We have been desperate for years to move for this very reason.  The distance and inaccessibility is downright dangerous for her.  Had she arrested (which she has done in the past during these events) or had she been having a massive shunt malfunction, that amount time passing could've caused severe damage or could've cost her her life.  Happily, she is home and has recovered.  While she is struggling some to adjust to new medications, she has not suffered any permanent effects from this seizure.  We'll be scheduling surgery in the next month or so to add an additional valve to her distal shunt.

Other than those things, there are a lot of inside activities happening - donut making, football playing, movie watching, and general silliness going on.

I promise another update soon - next time on our sweet Kamila and the hopeful progress that we might soon be making in bringing her home!! 

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