Tuesday, November 11, 2014

Jaylie - Almost 5yrs old


This year has been a good year for us so far. In October of 2013 I was asked to fill in as the manager of my team. In early 2014 I was promoted into the Operations Manager role I had been facilitating since Oct 2013. This new position, continuing working on finishing up my bachelors and helping to raise our wonderful Jaylie takes up all my time; thus the lack of updates throughout this year. With that said; Jaylie is doing well :).

Jaylie is still in pre-school and receives therapy in and out of school for oral, motor, cognitive, speech and eating.

Though Jaylie is still lagging behind some of her peers in some areas, Jaylie has made significant progress in her motor skills, cognitive abilities and communication abilities; so much so that is some areas she is ahead of her peers :).

Here are a couple of areas we are focusing on improving Jaylie's abilities in:
  • Fine motor skills
  • Potty training
  • Eating
  • Attention span
  • Cognitive comprehension 
Here is a review of the year thus for.

In January 2014, while attending a regular neurologist appointment, we learned that Jaylie hit a significant milestone in that we had reached the two-year anniversary of taking the zonisamide seizure medication. This milestone is significant in that it is a trigger point at which the Doctors can look at starting to wean Jaylie off of seizure medication. In order to start the seizure medication weaning process, a 24 hour EEG is required to look at Jaylie’s brain waves to make sure there are no significant abnormal brain activity associated with seizures before starting the tapering off process. We were excited to hear this news and eager to start the process of exploring weaning Jaylie off the last medication she was taking, leaving Jaylie medication free!

On Jan 30 we started this journey with the first of 2 scheduled EEG’s:

Jan 30th First EEG

The EEG showed no significant seizure brain activity which enabled us to start weaning Jaylie off the zonisamide seizure medication. Yay!!!

One of the significant things about weaning Jaylie off zonisamide is that zonisamide is an appetite suppressant. Since Jaylie still is not eating any significant, the hope is that weaning Jaylie off zonisamide will help Jaylie to eat.

Feb 2nd
Go Seahawks!

March 20th - Dance

March 21st - MRI
Follow-up MRI. All things looking good :).

April 19th - Easter with Grandma

June 27th - Playing in the rain

July 11th - Boating

From January through to September things went well with Jaylie. We had a great summer and the medication weaning process went off without a hitch, thank you Lord! :)

In Sept 2014, after we had completely wean Jaylie off the seizure medication, the neurologist scheduled a follow-up EEG to see if weaning Jaylie off the seizure medication had any ill effects.

On 09/09/14, the second EEG of 2014 showed no significant irregular brain activity. Hallelujah!

Jaylie is not eating a significant amount of food though she is trying of amounts of various different types of foods.

Now that we are fully off of the seizure medication (an appetite suppressant) we are working on developing Jaylie’s eating capabilities with Children’s Hospital through there feeding program.

In Dec we have a 2 week intensive eating therapy program we will be taking Jaylie to in hopes we can get Jaylie to start eating significant mounts of food :).

09/17 - Pic w/Cousins

09/19 - Starting pre-school

October - Costumes and Cousins 

Things were moving along well through September and October until we hit a snag last week here in November...

Last week, during Jaylie's IEP at her school her teacher said two of her therapists noticed some odd behavior during their therapy sessions. The therapists advised Jaylie was participating in therapy, following instructions when all of the sudden Jaylie went blank and was unresponsive to instructions for a couple of seconds. After a couple of seconds passed Jaylie reengaged like nothing had happened. Both the therapists advised this was not typical behavior for Jaylie and found it odd. They also mentioned Jaylie was looking and sounds like she was a bit under the weather that day.

A discussion was had with Jaylie's neurologist whom advised the reported behavior was serious and that Jaylie needed to be tested right away!

Here's Jaylie at her 3rd 24hr EEG for the year (though she looks like she's having fun, and she does have moment of fun, these things are not fun for anyone involved...):

November 6th - 3rd EEG of 2014

Here is what my wife had to say after the 3rd EEG:

"Thank you for all the continued prayers. It was a busy 36 hours with Jaylie. All your prayers were felt. We are going home! 
Do to some irregular heart and oxygen changes happening through out the day and night with her heart rate dropping into the mid 40's an EKG was completed first thing this morning. It was found that Jaylie has Respiratory sinus arrhythmia as well as Stills murmur. Both are not concerning at this time.
The EEG in some areas showed overall improvement from two months ago. Dr. Simone did see two discharges in the night while J was sleeping. (She saw one last time) Dr did not see any seizure activity BUT based on the episodes documented she is not convinced that what we have been seeing are not seizures.  
Our options moving forward today were: 
1. Do we wait and see if we see and document another episode and when we do we need to call out her name loud or pinch her and see if she responds. No response is a seizure and we need to treat.  
2. Do we treat starting today and see if no more episodes are seen.  
We have chosen to not treat at this time and really watch J. If we see an episode that she does not respond to with us calling to her (alert) or pinching her then we will start back on zonisamide medication (appetite suppression). We have prescription on hand"

So as we sit today, Jaylie is still off her seizure medication and is being watched at home and school for seizure activity.

We are still on track to participate in the intensive feeding program through Children's Hospital in early December.

We thank you all for your pray and support! We love you xxxo!

We hope you all have a wonderful holiday season!

Nathan, Kristina & Jaylie