Harsh Reminder!

      Reminder(s) is defined as "a person or thing that serves to remind", according to dictionary.com.  Then what is remind?  The same site tells us that remind is to "cause a person to remember".  Life does not give us options on how we will be reminded of something, nor do we know when it will happen or whether the reminder is subtle and nice or just harsh!  Well, on Wednesday morning we got a not so subtle reminder that Epilepsy/seizure disorder is still a very prevalent part of Kerstin's journey!

     The thing about seizures is that they have no time frame, they can suck the joy out of any moment.  They can happen in the middle of the day, during a ride from a doctor's appointment, in the middle of the night or even early in the morning, marking the end of a good night's rest.  Which is what happened yesterday.  Kerstin was suddenly awake at 5:40 a.m. and thrust into seizure activity.  With two episodes of cluster seizure, I am so thankful that she did not require medicinal intervention to stop the seizures. 

     So, what are these cluster seizures/seizure clusters?  Clusters are when seizures start and stop.  The Epilepsy Foundation states that, "Seizure clusters are also known as repetitive or serial seizures, with return to baseline between events".  How can one truly prepare for that?  There really is no comparison for a parent or caregiver tending to a child with special health care needs that cannot tell you that they may be sensing that one is coming (an aura) nor can you truly know what it is like when you have not had a seizure yourself.  As recommended, it is good to make notes of the seizure activity:  how long it lasts, how many clusters, how long it took to return to usual activity, etc...

     To those clusters, in the dark coldness on January 3, 2018; thanks for the harsh reminder.  I am reminded to always know what to look for and to continue learning and growing on this journey of Growing With Kerstin. 

More to come...


Reference
Epilepsy Foundation:  Seizure Clusters 
Dictionary.comhttp://www.dictionary.com/

Reflections: An Interesting Year

     2017 has come to an end.  This New Year's Day 2018 is a day of reflection on what has been in the past year and looking forward to what is to come in the new.  We never know what a year will hold for us but, we are always hopeful that it is always filled with many blessings, good tidings and great joys.  January 1, 2017, I never would have thought that after a few good years of no hospital stays, and little to no illnesses, that Kerstin would have a year with several stays and a procedure.  Yet, we ended the year partying and celebrating 16 years of a blessed life of growth and more growing to come. 

     I have in the past, commented that "it is always good to go to Children's and leave on the same day", we have and continue to have our share of those days.  Thankfully, most of them have been in and out days.  However, in July and again in November, we did not.  The year was well, appointments were also going well.  Kerstin had a good year.  Then there was July, Kerstin got really sick with a summer cold that just would not seem to break.  She was taken to her pediatrician to start the usual rounds of meds and even a chest xray to only saw what was feared...pneumonia.  So, an antibiotic was started.  Though, a week later Kerstin still was not better we went back to her doctor and on examining her, he determined that her lungs sounded worse than the week before.  He thought it would be best if he called her pulmonologist.  We sat and waited for a while for the doctors to consultant to be told that they had a room for Kerstin already at Children's and that her doctors there thought it would be best to get her started on a rapid rounds of intravenous medicines.  We ended up there for a few days.

     Backing up to September, a new specialist was added to Kerstin's medical team, a new gastroenterologist.  This would bring changes to meds as well and talks of how to get missy's gut stable and rumination under some sort of control.  Things moved quickly and at times it seemed to quickly for me;  the constant consults with the GI specialist and surgeon turned to placing a GJ tube in place of the Gtube.  The procedure was scheduled and the tube was placed.  Kerstin now has a feeding pump again this time there will be no boluses, just continuous feedings.  

First visit with new team member. 

Checked in at IR

Post GJ placement

Hours later, all smiles and ready for the new journey.

     Sweet November...and what a story it has for us.  I am not fond of Novembers at Children's of Alabama.  Yet, this is where we found ourselves and the week before Thanksgiving.  Kerstin had gone to therapy the Wednesday before and the day just seemed to go downhill quickly.  She started having issues with her feedings and was actually vomiting food, which should not happen with jejunum feedings.  After calling to GI, they stated that she needed to be seen in the emergency room there at Children's!! After spending a few hours there, I was hopeful that we could go home but felt like it would be the case.  In fact, we would spend a week there.  More pneumonia, seizure activity as well as the stomach issues. 

Back at Children's

Resting after a very long day. 

Comfort aids

A mother's saving grace(s)

     In spite of all of those before mentioned instances, the year was well and I am certain 2018 will be be even better!  

Looking forward to what's to come.
What will happen if we don't give up?  Endless possibilities!

More to come in the New Year!