Sunday, September 20, 2015

Alabama Angels Pageant-Snowflakes and Dreams

Here are Kerstin's official pageant pictures!  

Friday, September 18, 2015

Our journey!

     I have not made a post since the Fireworks post back in early July.  Well, so much has transpired since July 4th weekend and the post.  I don't even know exactly where to start but, with everything, you have to start somewhere.  

     So, July 25th is where I will start.  That is the day of the Alabama Angels Pageant.  As I prepare this post, I realize that I have yet to open the email containing Kerstin's official pageant pictures.  They will come later!
The day was beautiful, it was a very hot day but it was so beautiful for all of the participants and their families.  Kerstin had a crew of supporters as usual.  The day was not only beautiful it was a lot of fun.  We got home and I just had to show my mom and oldest sister the pics from the day, since they didn't attend.  First I had to get Kerstin settled and into something cool and comfy.  Blessed to live next door to my mom's I walked over to show her the many pictures from the day.  

     Mom was so excited to see her youngest granddaughters hanging out with Kerstin on this beautiful Angels Day.  We took pictures from the arrival at the church, Kerstin changing into her formal dress, getting her hair fluffed by my sister and Kerstin's Guardian Angel, to make up and definitely on the stage.  It was a thrill to show my mom.  My regret about that afternoon, I didn't take Kerstin into my mom's; Kerstin was so tired and hot, I wanted to her to relax a bit.

Pageant ready; Snowflakes and Dreams

     The next day, July 26th.  I am up on my Sunday morning routine of checking on mom, she is already in the kitchen about to have breakfast.  So, this is where we will sit and chat about Kerstin, the pageant again and life...whatever comes up.  We sat for a long time that morning talking, mom asked me to help her get back in bed before I left.  She said she wasn't feeling well and wanted to lay in bed for a while.  About an hour later my mom was being rushed to the ER by my youngest sister!  Almost 2 months later I am still numbed by how quickly life changed that weekend.

July 27th at 9:25 a.m., I stood outside of an ICU room and watched things I've only seen in movies and on TV take place and finally hearing a doctor say "Time of death" and was talking about the woman that knew me best, the one who instilled so much in me, who took care of me and my child!  Those three words signaled the end of her in the physical.  

     As we sat there trying to come to terms with things, I felt the urge to walk around to the therapy center where Kerstin goes to cancel her appointment that would have been that Wednesday.  As I was walking, I bumped into one of the therapist and she stopped and asked if I was okay? NO! She told me after I informed her of what was going on, that anytime she hears the "Code Blue", whatever she is doing, she always stops and says a prayer for the patient and family.  This time she said, she had no idea that she was praying for Kerstin's family!

     Not only did I feel the need to cancel therapy,  I also questioned how could I tell Kerstin what was going on and that she would not be able to see her Granny anymore.  How could I do this in a way that my child would understand?  I still don't know if I have done it in an okay way.  I have shown her pictures and videos yet every time we go to Granny's house, Kerstin always looks at that chair where she would be sitting and it breaks my heart to know that she is still looking for her! 

     We are almost two months into this new reality and it still seems like it is July 27th.  So, our journey now includes grief and many firsts.  I just had my first birthday without getting the one call/birthday wish I could count on even if no one else said anything, that was extremely hard as well.  We are still growing on this journey! 

Our angel, may she rest well!

 An update on those fireworks and seizures is coming next...

Wednesday, July 8, 2015


    So, Independence Day weekend 2015 has come and gone.  Barbecues, cookouts and fireworks!  Kerstin has always enjoyed all of the colors lighting up the night skies.  There were heavy storms and lots of rain on July 4th so fireworks were put on hold until the next night.  I checked with little miss bossy to see if she wanted to go out.  She smiled and looked up, to signal "Yes".  She was excited!

     As soon as they start...her eyes were closed, very tightly too!  The entire time we were talking to her, asking if she would open her eyes, telling her that she was missing the fireworks.  All to no avail, she didn't open them until she was back inside.  This interesting night seems to have not ended!  Kerstin has barely slept over 8 hours in the past 48 plus hours!  

     This called for another call to her neurologist.  His nurse had two questions for me:  Has she been sick?  No.  Was it that time of the month?  No.  Has she been around fireworks? YES!  My family and I had come to the conclusion that the flashing lights and the sounds had triggered something in her, since she never opened her eyes.  The nurse said that they have had a number of children that have been disturbed by fireworks.

     Speaking of that "time; we are already in a "monitoring" phase because the past two months we've had obvious hormonal changes.  The neurologist wants us to keep an eye for activity and possible catamenial epilepsy/seizures.  Oh the joys of growing and changing! 

     I really hate that they had a negative affect on her this time.  Like I said before she has always, always loved fireworks and they have never worked on her nerves.  Melatonin is the only thing the neurologist recommends for a sleep aid for his patients.  She was put on melatonin years ago and started to sleep better with the occasional events of lack of sleep. 

     Now, we've gone with her waking up at 2;30 a.m. on Monday morning and staying awake the entire day, until 6:30 p.m.  Only to wake again at 9:30 p.m. and stay awake until 1 a.m. and back up at 4:45 this morning.  She did take a nap, if we can call it that, around 5:30 this afternoon.  Guess what time she was awake again?  6:15 p.m.!!  As I type, it is 10:35 p.m. and she is wide awake.  I can't deny it, we've gotta go ahead and restart our friend, Melatonin!

More to come, 

Tuesday, May 26, 2015

Not a seizure free weekend!

     This Memorial Day weekend was very different from those of the past.  It didn't start out that way!  It seemed like it would be uneventful.  Saturday was spent mostly indoors watching movies, Sunday was the opposite.  Kerstin wanted to show me that she is the boss in these parts and I jokingly said that she was fussing at me about something throughout the day.  I was in and out of the house because I was working in the yard, trying to be a gardener!  

     Sunday night took a sudden turn!  I was sitting in one room finishing up an assignment for class when I heard Kerstin making a light moaning sound.  I ran in to check on her, only to find that she was not alert and had that look as if she was looking pass or through me.  The left side of face was twitching, then nothing!  She seemed okay and alert, only to turn her head and everything started again.  This happened over and over. 

     I always keep my cell handy to time her seizures and now to access my new favorite app; SeizAlarm.  I found the app last month after Kerstin had a seizure.  I couldn't fall asleep after it was over so, I just started reading about seizures and stumbled across a jewel.  I wrote about it here.  If you or a family member or friend has a seizure disorder, Epilepsy, you should have this as a resource.  It works and makes the emergency contacts for you, with a map of where you are!

     After, I opened the app, it immediately made the contacts for me, within minutes my sisters were with us.  Kerstin had to be given her Diastat because the clusters had gone on over five minutes.  So, we wait to see what's next!  What happened was scary and not something you get used to.  Kerstin went into a full grand mal clonic-tonic seizure with loss of alertness, vomiting, full body jerks!   That brand new suction machine we just picked up Friday had to be put to work!  

     This seizure was relentless!  It completely took over my baby's body, her eyes were so red, her body so stiff and uncontrollably jerking.  It was only adrenaline that kept me from screaming and crying.  More Diastat had to be given.  We called Children's Neurology and the on call doctor advised to take her to the ER since they had not stopped after 2 rounds of Diastat.  

     There, they performed urinalysis, blood work, CT scan and chest X-ray, to all come back normal!  There was no fever!  What caused this?  That is a mystery!  We will have to follow up with her regular neurologist "ASAP" per the ER doctor.  He seemed just as puzzled as I.  He said, he just didn't see anything out of the ordinary with the tests they performed.  He did order a level to check her Keppra levels.  That could be done in the ER and had to be sent to another lab. 

     Memorial Day, we left the ER at 7 a.m. so, needless to say, they remainder of the day would be spent sleeping.  That is what we did.  For the first time in my 30+ years, I didn't spend this holiday with the family and I did not see my own mom!  This seizure activity took a lot out of Kerstin too.  She was probably awake for an hour or two at most on Monday.  Now, we wait!  Wait to see what her neurologist has to say...

Definitely more to come...    

Tuesday, May 5, 2015

Elwell Money Minder: Disability Awareness Month

Elwell Money Minder: Disability Awareness Month: Invitation for "Viral" Participation by Ellen Elwell Almost all of us know someone who has a physical disability. Sometimes, th...


Sunday, May 3, 2015

National Mobility Awareness Month 2015

     Another year, another entry in the National Mobility Awareness Month Hero contest (#NMAM15).  An accessible van is no longer a want, it is a need.  Kerstin is now 13 and weighs over 80 lbs. herself with a wheelchair that weighs 68.8 lbs.  Every stop we make, I am lifting about 150 lbs. not counting her things needed for care and hygiene.  

     Along with Kerstin being a teenager, she likes to be on the go.  Kerstin likes going to the movies, to Target, and other outings.  When that many stops are factored into one outing, there is some heavy lifting being done.  I have never been the mom to keep her sheltered and hidden, she is on the go, out and about as much as possible.  Also, Kerstin has a number of doctors and other appointments that she has, they keep us on the go as well. 

     A dear friend submitted the entry this year for the van contest, here's some of what she had to say:  

"I open my email in Dallas to find new photos from my dear friend Mattisa, and I smile. The pictures let me share her and her 13-year-old daughter Kerstin’s lives in Hayneville, Alabama (pop. 994). Most days, Mattisa and her “Sweetpea” drive their old 2001 van to Montgomery, Selma or Birmingham – 40, 38 and 125 miles each way respectively. They go for school, basic shopping, shows and – most importantly – Kerstin’s doctors, nurses, therapists and surgeons. She was diagnosed with spastic quadriplegic cerebral palsy at 6 months and with hip dysplasia, epilepsy and lung-threatening scoliosis after that. Last year, Kerstin weighed just 40 pounds, necessitating a life-saving, permanent feeding tube. She’s now a normal 80 pounds. Despite her many disabilities, surgeries and ongoing seizures, Kerstin is a sweet, smiling girl. Her first love is, of course, her magical mom who’s always there for her. In my eyes, Mattisa is exactly the hero every mom hopes she’d be if her child were disabled. She knows her little girl will never walk, talk, gesture or care for herself, but the words “complain” and “sympathy” are not in her vocabulary. A single mom, she always keeps Kerstin safely tucked by her side as she works, volunteers (a lot!) and advocates for disabled children. She even completed her Associates’ Degree in Education this year and is moving on to a Bachelor’s Degree in Social Work/Human Services. Not surprisingly, her favorite song is “I’m Invincible.” And yet, I worry. Mattisa’s back and shoulders are deteriorating. Each time the two get into or out of their van, she lifts Kerstin along with her wheelchair and gear (150+ pounds). An average day is 8 stops – or 1,200 pounds of lifting. What’s more, with Kerstin’s delicately fused spine, any jolt could be disastrous. My dream is to see my hero, Mattisa Moorer, win the wheelchair-accessible NMEDA vehicle. It would literally be a life-changing miracle."

   If you don't mind, please give us a daily vote in the contest.  Don't forget to answer the daily question for an extra vote.  Thank you so much for the support.  You can vote for us here

Thanks for the votes!

Thursday, March 19, 2015

Pump No More!

     After about two weeks of not continuous, overnight feedings, we talked to Kerstin's clinical nutritionist at Children's Hospital.  Since, she has been doing fine with only taking gravity boluses throughout the day, it is officially okay to discontinue her continuous feedings!  I am so happy and very thankful!  She is continuing to make strides and is doing well!  No more beeps in the middle of the night because she may be laying on the lines.  Don't have to worry about her accidently pulling the ports open and not being fed.  No more phantom beeps in the middle of the day...hopefully!  

     Yay for Miss Kerstin!  Another step on our journey of Growing With Kerstin! 

My sweet, silly girl!

More to come...