Happy New Year!

     May this New Year be filled with many blessings for you and all those you love!  From our family to yours, 

An Unforgettable Day: A Look Back

     Monday, November 4, 2014.  A chilly morning in downtown Birmingham, Alabama. We around the night(11/3/13) before so we wouldn't have to make to two hour journey at 3 a.m.  We got to the hospital at 5:30 a.m. to make sure Kerstin was checked in, all forms filled out.  We met team after team, nurse after nurse.  It seemed like an overload but it was reassuring that my little angel was in good hands.

     Around 7:30 a.m. the nurses came in to take her back so that the could begin the anesthesia and all that came with spinal fusion prep.  We were told that someone would periodically come out to inform of what was going on and that I needed to leave cell numbers so that they could contact if we left the waiting room.  Yes, they suggested, getting a change of scenery, it would be a long surgery.  About two hours later, I got a call to say that Dr. Killian had started the incision.  It took a lot to not cry.

     It would be hours before another report would come and even longer before I would see my love.  The entire process was pretty much all day.  It was around 4 p.m. before she was out and in recovery and it wasn't until around 5 p.m. before I saw Kerstin.  It was a bit of a shock when I did.  I had been warned that she would be getting a lot of fluids while she was having the surgery and that with her lying face down, it would settle to her face and arms, causing significant puffiness.  Understood, but actually seeing the difference was shocking.  Surgery went well.  Dr. Killian showed me her after x-ray picture and it was a huge difference.  My sweet pea's spine was straight!

    Kerstin would be on the 7th floor in PICU for the next 24 hours, then onto the 10th for what we thought would be for the next week. I never knew that ICU was such a busy place!  Not as quiet as I thought either.  This would be a long 24 hour stay.  Over in the night Kerstin started having some complications with oxygen and her blood pressure dropping.  She needed more blood.  She actually needed the 4 units we were told to have on hand.  We had to use the blood bank because the four units from her family had clotted or congealed.  She needed that pain pump overnight as well.

     Just being in somewhat of an upright position overnight, the puffiness and swelling was already going down.  It wouldn't be until late the following evening that she could leave PICU, she was headed up to 1046H.  That's where we would live until Thanksgiving Day 2013!

Looking back...it's been a journey!

More to come...

Ever Growing Vocabulary.

     I must say it again, having a child with "special needs" causes the parent to learn so much and learn it quickly!  You would be surprised at the amount of information that is giving to a family in a single doctors visit, an IEP meeting or at a therapy appointment.  The things and information I used to take for granted, I can no longer.  

It's been a long week, she hasn't been feeling well.  So, seeing this smile return made my night!

     In the not so distant past I had heard of Baclofen (BAK-loe-fen) and Scopolamine (which I keep wanting to pronounce sco-lop-a-meen instead of skoe-POL-a meen).  Never knew that one day, Kerstin would actually be recommended for them both.  That's where we are on this journey now!

Baclofen:  Used to treat children and adults with severe spasticity, and to help with the treatment of physical and occupational therapies.   Kerstin's PT suggested we see her newest doctor, who is a doctor of physical development and a long background with Cerebral Palsy.  Both her OT and PT sent separate letters to Dr. Law suggesting Baclofen to aid in their treatment.  

     Kerstin can be very rigid at times, making it difficult to dress her as well as perform various therapies.  Also, she becomes so spastic, that her kicking becomes so hard.  It is hard to see your child go through things like that!

     The second medicine; Scopolamine patches. The little patch that was featured in the Wordless Wednesday 09/10/14 post. These little patches are often used to prevent nausea and vomiting even motion sickness.  So why this patch for drooling?  Scopolamine or "transdermal patches" have been found to be very effective with controlling the drooling in patients that have traumatic brain injuries. 

     No medicine comes without side effects.  Both may cause dizziness and drowsiness.  The Baclofen causes frequent urination while the Scopolamine causes dry mouth and throat, as well as dry skin (it dries liquids) and we were told to make sure that Kerstin does NOT get too hot and has plenty of liquids!  Needless to say, you won't find us out and about too much in these final days of warm weather!

Lets not forget what happened on this day 13 years ago!

Weekend in pictures!

Kerstin and her cousin/friend.

Kerstin with her former P.E. teacher

Working pups

Kerstin with Jackson

Kerstin with Roxie

Kerstin along with Lucy and Millie

Kerstin and mommy...balloon release. 

Princess Smiles-a-lot!

2nd Annual Alabama Angels Pageant

     The 2nd Annual Alabama Angels Pageant has come and gone!  I am sure that there were many participants that did not or could not participate in last years festivities, Kerstin included.  This year was different.  I mentioned on the Alabama Angels Pageant Facebook page months ago that Kerstin would not miss the event this year.  There would be no more hospital stays that would keep her from Hunter Hills Church! 

     You see, at the time of the pageant in 2013 Kerstin was just coming off of her 2 hospitals stay after two separate surgeries one month apart. The first being a bi-lateral triple arthodesis on both feet and the second was to have her g-tube placed.  However, pageant directors came to our home to present Kerstin with her crown, sash and goody bag!  Her day was beautiful all the same just not the full experience with all the bells and whistles. 

     The Friday before the pageant was a day of prepping and pampering for Kerstin.  Hair, nails...somewhat of an in home spa day for Princess Smiles-a-lot!  The excitement was brewing in Kerstin, I could see it all over her face.  She was so excited that she woke up Saturday morning around 4:45 a.m.  YES!  I went ahead and checked all of bags to make sure we had everything.  

     Upon arriving, the carriage rides were in full effect.  The decorations were so beautiful.  Volunteers were on hand to greet everyone, opening doors, just so much kindness.  There were booths set up to provide valuable information to the families as well.  We checked in and was assigned Kerstin's Guardian Angel.  I will tell you, I know we had the best one in the building!  

     The angels were so beautiful!  This day was a day they had the opportunity to shine and were included.  They sang, danced and told jokes...like my little lady did with her Dynavox.  

Here's how the day went...

Dressed, belly full, now it's time to prep!

Actually smiling while I'm doing her hair!

Director, Renee Lantz

Pageant Team Leaders/Coordinators

Getting ready to go on stage...her cousins at her side.

Look mommy..I have on a little lipstick!

Her name in lights!

Little jokester is coming on stage...

Kerstin with her Guardian Angel, Carol and emcee, Chris Britton

Telling her jokes with assistance!

Angels and military excorts!

Crowns and sashes..

Crowned!

A goody bag too...

The day is done...dreaming about the next one!

Georgia on her mind!

     Well, the weekend of July 11-13 has come and gone!  The weeks and days coming up to the trip, I became worried on how we would travel with Kerstin's wheelchair, luggage and that included a Kangaroo pump and the pole which it hangs.  Little did I know, the medical supply company would screw up her pump bag order, leaving us without bags for 4 nights the week prior to our trip.  

     I had to consult with my nurse sister, on how to rework Kerstin's feeding schedule so that she wouldn't miss the amount the she would have gotten overnight.  Turned out to be easier than I anticipated.  Not having to travel with the pump and pole, along with Pediasure, syringes, bags, and extension sets that we already had to carry.  The boluses turned out to be pretty easy, the adjustments were too.  

Kangaroo Pump/Pole

     Now, on to the fun stuff!  Kerstin has been a fan of the Georgia Aquarium since the very first time she went in 2007.  She was in love with all the aquatic life and her mom was in love with the delight in her eyes!  I'm sure every parent wants to witness their child(ren) doing or seeing something that they love.  

     So many animals to see, so many people!  It is my hope that one day soon, people will realize that people with disabilities are ever present and they enjoy doing things just like everyone else.  I say that because we constantly came across people that were seemingly unaware or just didn't care that there was a child using a wheelchair, trying to enjoy the aquarium just like they were.   

     First stop, the Dolphin Tale show, we couldn't take pictures or videos!  The show was beautiful!!  Kerstin didn't take her eyes away from the pool area where the dolphins and trainers performed.  On to the next attractions.  Tank after tank, we saw beautiful fish, otters, whales and sharks.   She was worn out but, she had a great time!  Here are a few pictures we'd like to share. 

Georgia Aquarium, Kerstin is on her way!

On our way in, an employee on break took our picture!

Whale Shark

She loves the Belugas! 

C O U S I N S

She got to see divers in action. 

Got to see an interesting parade through the lobby. 

Until next time...

More to come...