Monday, September 19, 2016

Where the Journey has taken us...

     It has been a few months since I've posted last but, needless to say, we are still on a journey, new things to explore each day.  Since Kerstin's hospital stay for the video seizure study, she has continued to have at least one episode per month, which is better than the point she had gotten to.  Her neurologists have advised in the past that as long each of these seizures were not like a video of one of her seizures shared with them, they would not be too alarmed by her activity.  It seems as though seizures will be a part of our journey.  They don't want her too medicated that she is not very alert or aware; I don't want that for her either.  I will have you know that those days that she was in the EMU, there was no seizure activity of any kind, as soon as the two hour trip home was complete and she was all relaxed...seizure!  

     So, after that seizure study, came the end of the school year and Kerstin's time in middle school.  Off to high school!  After many years of ups and downs and hard fights of advocacy for inclusion, accessibility and much more with the local school system, I decided to start a private home-school for Kerstin!  Yes, we are on the journey of homeschooling.  The lessons are modified and truly catered to her, we are on her schedule.  After talking with a friend about homeschooling this past Spring, she made me realize that Kerstin's education didn't have to take place all day long in a classroom, especially not a "self-contained" setting.  We are about a month in and it has been fun for me to find great resources on Youtube and various other forms.  Kerstin has been enjoying the lessons except that one day, I decided to take Science outside...not a good idea in late August.  It was still way too hot!

     Kerstin has been getting much needed PT and OT, and on a regular basis, unlike services in the school setting.  We have been working on some neck exercises with physical therapy and wrist tightness with occupational therapy.  The wrist tightness and contracture lead us to Kerstin's neuro-motor/ physical development doctor to discuss Botox as an option.  Well, she got her first round and weeks later her OT is happy with some of the flexibility she is gaining and specially made some hand splints to further help with the wrists.   We are still working on neck support and strengthening.  PT suggested we look into a product that helps with those things, Dynamic Cervical Orthosis.  Information is being requested on the product as it is something new for us all. 

     It may not be well known but, I am grateful to be in a position as a Family Resource Specialist with Family Voices of Alabama.  The mission of Family Voices is to ensure that there is family-centered care for children and youth with special health care needs.  The information center that I am a part of is staffed by parents of children/youth with special health care needs.  I have been with Family Voices a little over two years now and it has been a wonderful step in this journey of education and advocacy.  We have this booklet titled "Transition to Adult Health Care Guide".  I have had them in my supplies and have handed them out at conferences and workshops and have said to myself countless times that, "I have a while before I need to go through one for Kerstin".  No...it came sooner that I thought.  I got a letter from insurance and social security with information on how to prepare as "the minor child approaches adulthood"!  WHOA!  This is happening too fast.  Kerstin was just starting school, now she's in high school and I have to think about "adulthood".  I pulled out a copy of the transition guide and started combing through it realizing that  my baby is no longer a baby. 





     We are always on a journey and a lot of times they lead us to Target and Starbucks...Growing With Kerstin.  


More to come,

Tuesday, May 17, 2016

Epilepsy Monitoring Unit (EMU): Day 1

     I am going to try and make a post at the end of day each day of our stay here at the Children's Hospital EMU.  As I prepare to post about the busy day, I can't help but think about my mom.  I listened to a recording of a conversation I had with her on May 17, 2015 at around 9:50 am.  Yes, one year ago, Kerstin had had a seizure and was restless the night before (May 16, 2015), my mom was concerned as always and as we talked, she told me that she hoped Kerstin's doctors could find out what was going on with her.  Well mom, it's been a journey and many appointments later, we are here to go through another series of tests and studies to see what's going on.  
People watching at admitting office

Welcome screen on the telly!


     Today, we checked in at noon.  Then it was on to the 10th floor of the Russell building; a very familiar floor.  We've even seen familiar faces.  All too surreal.  I am very thankful that Kerstin is not here because of unexpected surgeries or illnesses.  However, we are here because of the increase in seizure activity Kerstin has been experiencing.  Tonight is the first night of monitoring, she's been placed in her "mummy head-wrap", leads and wiring everywhere.  She is content, comfortable and seems to be relaxed.  Though, for whatever reason, her temp tried to spike a bit, no worries, it has already gone down.  
Lead placement. 





     Not sure what the night will include but an update is on the way tomorrow.  


All wrapped...monitoring in progress. 



More to come...






Wednesday, February 17, 2016

Seizures Suck!

 

   "Seizures Suck!"  If you have a family member or if you know someone who has a seizure disorder or is diagnosed, you have probably heard them say those words or have seen them around.  They are so true.  Seizures suck the life out of a party so to speak.  The day or night may be going along smoothly, then out of nowhere...SEIZURES happen and literally suck the joy from the moment. 

     Kerstin's first seizure (first visible one anyway) was April 15, 2004.  That is a night I won't forget for some time.  Since then I can't even begin to count the number of seizures she has had.  However, it is a fact that the older my daughter has gotten, the more frequent her seizures have been happening.  At first, they were spaced by days, weeks even months, not anymore.  I can tell you that we are blessed enough to say that she is not having them on a daily basis like so many with the diagnosis.  

     On Monday, February 15 we were once again at Children's Hospital for another neurological appointment.  My oldest sister went along with us to this seemingly routine appointment and I jokingly told her that I hadn't been on the other wing of the hospital since Kerstin had been discharged after that month long stay.  Right off the elevator we even bumped into a former nurse practitioner that worked with Kerstin's orthopedic specialist, chatted with her for a minute and rushed off to the appointment.  

     Once in the back, Kerstin and I snapped a few pics, she's always camera ready :))  Nurse comes in first and we share seizure activity since the last appointment, talked about sleep pattern and routine question and answer.  Later, the doctor comes in and routine checks are done, we go into detail about seizure activities and how long they last.   Kerstin is a growing young lady, Dr.  talked all about hormonal changes, progesterone, Depo-Provera, ovulation, cycles and the numerous common female changes that can in fact increase seizure activity.  




     Also, noted was the need to have an updated MRI study done as well as the need for a sleep and seizure study.  Okay.  "I need to have all of these done before we consider the Depo shots and to rule out the need for any epilepsy surgery." says the doctor.  The stunned mommy in me, couldn't even ask details on "epilepsy surgery".  There will be no need for that.  Yet, in my mind I am still thinking that the sleep study, seizure study and MRI would be an overnight process...NO!  We are now mentally preparing for a week long stay in our former apartment building called- Children's Hospital of Alabama-Birmingham!  


The journey continues...grow with us!

More to come... and yeah,



Tuesday, February 16, 2016

Movies!

     "Inside Out"!  We really enjoyed the feelings and emotions of "Riley".  Really cute movie!  


Thursday, December 17, 2015

Birthday Love!

     Yes, we are in the midst of another birthday for my darling child!  December 17, 2001 my life changed, and it did so for the better.  I went from a naive young lady, not too concerned about how things were in the world, admittedly a little selfish at times, to a woman that cares so much for the little girl that has changed my life and the lives of so many family, friends and loved ones near and far.  Kerstin is loved so much!  I cannot express fully the love she is shown over and over and over!  



     I feel so blessed to be called "Kerstin's mommy"!  I have said so many times that this little girl has changed my life, she has forced me to grow in ways I would have never thought.  This year, I am so thankful and at the same time a bit saddened.  This is the first year that Kerstin is celebrating a birthday without her Granny!  






Moments after giving birth to Kerstin, she was in my mom's arms.  
  
Hours after Miss Kerstin arrived; three generations. 

Two weeks  after her birth; at her first doctor's appointment. 



     The lady that walked into the hospital with me and did not leave until her children went home.  It is hard being a mom without the support and encouragement from my mom yet, we are going to make the most of it and celebrate life.  My mom would have it no other way.  She was always so supportive and was there for her children however and whenever she needed them.  Couldn't ask for a better mom! 

     So, here we are 14 years later, and everyday is a new step on our journey.  There have been some days, when I thought I wanted to just completely give up.  The words of wisdom from my mom always ring in the back of my mind, "You may give out but don't give up!"  



     Things that I am not giving up on:  the love I have for Kerstin, advocating for children and adults with special health and educational needs, faith, and  overall hope!  As we celebrate Kerstin's birthday and the holidays, we are filled with mixed emotions but, love outweighs them all.  

     So, Happy Birthday to the best child I know!  The love of my life, my joy, my reason for doing a lot of the things that I do.  I'm looking forward to more of this journey of Growing With Kerstin, we have a lot to do!


Happy Birthday, my wonderful child!!!



     


Sunday, September 20, 2015

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...