Tuesday, December 2, 2014

Jaylie - Intensive Feeding Therapy Day 1

Morning Session (feeding #1):

The morning session Jaylie showed little interest in food, only eating a couple of nibbles of things. Though Jaylie didn't eat much, she did play with all the foods presented to her, showing no fear or apprehension of the foods themselves. The therapist said Jaylie was doing really well in her familiarity of different foods and textures by being able to touch and play with them, and that this familiarity was a big deal, a stepping stone into eating foods. 

The therapist advised the goal was to key Jaylie into her own feeling of hunger and teach her how to address this feeling though eating (she didn't say these words exactly, I'm paraphrasing a bunch). 

The therapist advised the goal was to encourage Jaylie to eat when she feels the desire to eat but not try and make her eat at random times - this tying into the goal of teaching Jaylie how to identify and address the feeling of hunger. 

The therapist also advised the approach we are taking to try and key Jaylie into her own hunger is to setup a structure around eating that would psychologically and physically prompt Jaylie to eat on her own. The therapist advised the setting up of a routine eating times along with coaching, encouraging and modeling eating behavior has been found to be successful in teaching kids with oral aversions to eat.  

These therapy sessions are more around teaching the adults in Jaylie's life how to teach Jaylie how to eat than a magical set of sessions that instantly cure oral aversions.  

With that said, the morning session went better than expected even though Jaylie did not eat much at all. 

We tried the following foods during the morning session:

String cheese 
Fishy crackers 
Apple sauce 
Graham crackers 

Lunch Session (feeding #2):

During the morning session the therapist advised we should make our eating sessions with Jaylie as normal and as routine as possible. Being the engineer and opportunist I am, I took this literally and advised Kristina we needed to go and buy lunch for everyone and bring it to our session, including Jaylie's new favorite item a grilled cheese sandwich. 

By the time we got the the afternoon feeding session (12 pm) Jaylie was starving. She had had next to nothing to eat all day and little known to us was ready to dig into food. 

The therapist had the table all ready for us to sit down and try eating some stuff including carrots and cut up apple. We could not even all get seated before Jaylie grabbed an apple slice and started to munch on it. This was a great sigh and a definite improvement from the morning session. As Jaylie continued to nibble on the apple slice, we unpacked the food we bought at the cafeteria and started to dish it out, including giving Jaylie her grilled cheese sandwich. Jaylie nibbled at the crust and bread of the grilled cheese sandwich, eating and swallowing food, demonstrating to the therapist she could eat when she wants to. 

Jaylie continued to nibble on things for 30 mins or so while the therapist talked to us about what she was observing and how far along Jaylie was towards eating. 

The therapist advised it is expected kids don’t eat much and lose weight the first week — this is part of the process of teaching Jaylie about hunger and how to deal with hunger.

The therapist advised we will be working with Jaylie to get her to eat different types of high calorie foods such as whole milk, cream, butter, etc, with the goal being to get Jaylie to consume more calories orally. 

Based upon Jaylie’s familiarity with foods, and demonstrated ability to eat, the therapist advised we could go home to work on eating sessions 3 & 4, which we took her up on :).

Late Afternoon (feeding #3 - snack at home)

The drive home from the hospital is an hour + depending on traffic and so by the time we got out of the hospital, home and the car unpacked it was time for feeding session 3 (a snack). We told Jaylie it was “snack time” and asked her what she wanted. She enthusiastically said “Cheerio’s! Popcorn!”. So mom (Kristina) made some popcorn and got out some Cheerio’s. 

In keeping with the theme and instructions, we engaged with Jaylie while she was eating making it more of an interactive shared snack time. We played counting games, which severed a dual purpose, one to engage Jaylie in something she likes to do and two to keep track of what Jaylie is eating exactly. The grand totally was Jaylie eating 55 pieces of popcorn, 60 cheerios and a couple of sips of chocolate milk — all in all a good snack session for everyone :).

Dinner at Toreros (feeding #4) 

For our 4th eating session of the day we took Jaylie to a family dinner for her cousin’s 3rd birthday. We got there early and we able to get Jaylie (with no prompting at all) to eat chips and order her another grilled cheese sandwich. As soon as everyone else started to arrive, Jaylie’s grilled cheese sandwich arrived as well, keeping her on track with eating every couple of hours.

Jaylie nibbled at the crust, not as enthusiastically as early in the day but ate some none-the-less. All-in-all Jaylie did well at dinner eating around 5 chips, ~10 nibbles of grilled cheese crust and some small bites of ice cream.

End of Day Snack (feeding #5 - snack at home)

The dinner at Toreros when for a couple of hours and so by the time we got home it was time for Jaylie’s last snack of the day, her only formula tube feed, then off to bed to rest and prepare for the second day of feeding therapy. 

Jaylie again asked for popcorn and cheerios during this snack session. Admittedly we were not as involved with this snack session, leaving Jaylie to eat solo for a couple of mins while we got things ready for bed and prepared for the next day. We did not completely drop the ball though, coming back around the second half of the snack session to work on eating cheerios and popcorn. By this time of the evening Jaylie was tired and getting a bit cranky, with the crankiness being exacerbated by the lack of calories Jaylie is currently getting. The therapist advised Jaylie would most likely become a bit more agitated during this program due to the restriction of calories — that they would be watching her mood and weight closely to ensure things don’t get out of control.

Jaylie ate more popcorn and cheerios during her last snack session of the day, somewhere around 20 pieces of each.

We put Jaylie to bed with a rocketship ride (her new thing) from the couch to her bed with her laughing and giggling the whole way.

All-in-all it was a great day for Jaylie and eating.

The therapist advised our main goal would be to get Jaylie to eat 50% of her calories by mouth by the end of the two weeks. So far we are on to a great start.

Please keep us in your thoughts and prayers.

Merry Christmas!

Love Jaylie, Kristina & Nathan

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