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:

Milk

String cheese 

Fishy crackers 

Apple sauce 

Graham crackers 

Water

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

Jaylie - Almost 5yrs old

Greetings,

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

Jaylie - Almost 4yrs old

Okay, so I'm just a couple of days away from the 6 month mark from my last update... I'm noticing a trend here... I blame it on the hair I am losing here in my 30's :). Anyways, Jaylie is doing well. She is growing and progressing at her own rate which is exactly what the Dr has ordered.

Jaylie is eating more food, though not enough to be nutritionally significant, she is eating more often and more varieties of food. With that said, the feeding therapist is concerned Jaylie has not learned to eat by now. The feeding therapist has advised the longer Jaylie goes without learning to eat, the harder it will be for Jaylie to learn to eat.

Acknowledging the feeding therapists concerns, keeping in mind the Dr's overall goal of focusing on ensuring Jaylie is growing and developing holistically, we are confident Jaylie will be able to overcome her oral aversion. Jaylie's life has proven time and again despite the odds, God will pull her through in His timing. We have not given up hope Jaylie will learn to eat. We fully expect God will continue to be faithful, enabling Jaylie to overcome the oral aversion she currently is struggling with.

Jaylie loves pre-school. Jaylie started her second year of pre-school (first being the tailed end of the 2011-2012 year) in September. Jaylie is learning a lot at school. She is able to recite the alphabet very well, count to 20 in english and spanish (thanks Dora...) and carry on a basic conversation using an improved pronunciation of words, though her vocabulary pronunciation is not 100% correct. Jaylie's oral and cognitive abilities have improved quite significantly over the last 6 months.

Overall things are going really well this year. We've had at least 1 1/2 years of 'normal' life were we aren't running to the Dr every other day with some type of medical emergency, which has been really nice. We are so incredibly thankful for the blessing God has given us, so incredibly thankful for this experience of 'normalcy' with Jaylie. We are currently planning Jaylie's 4th birthday party and the holiday's to follow like normal people do. We like being normal :). Thank you Jesus! :)

We hope and pray this new normal becomes our normal.

We will never forget how this all started and the incredible work and blessing God has done and continues to do in Jaylie's life. We will never forget and will continue to acknowledge we would not be here in this place in life without all of your support, our beloved friends and family!

We hope and pray you all have a very blessed Thanksgiving, Christmas and wonderful New Year!

Happy Holiday's!

Nathan, Kristina and Jaylie

Recent picture:

Jaylie - 3 1/2 years old

So I told myself I was not going to be one of those every six month blog updaters... Well, I've pretty much failed at that, my apologies!

How is Jaylie doing? She is doing fantastic! She is growing learning and developing at her own pace. She's shooting up like a weed growth wise and has definitely started to display her own personality. She is speaking simple muddled sentences and words that usually need to be translated by grandma, mom or me, with some words being complete indecipherable, though very cute :).

Jaylie is a joy to all that she comes in contact with. She commonly tells the world Hi and bye as we arrive and depart from different locations. It is funny to see peoples faces as they carry along in their mundane world only to be interrupted by a cute little 3 year old saying 'Hi!!!' or 'Bye!'. No one is immune to Jaylie's cuteness or adorability :). Random strangers are no make for the joy and enthusiasm Jaylie instantly brings into their world even if its only for a few brief seconds. Needless to say Jaylie makes a lot of friends and positively touches a lot of peoples lives just by her being herself and enjoying this world she is a part of.

Jaylie is absolutely infatuated with dance and music. She commonly will start dancing and say "I'm dancing mama, I'm dancing!". This infatuation with music was taken to a whole new level when we took Jaylie to Sesame Street Live, can't stop the music this last weekend. Jaylie was so excited when she saw all the Sesame street characters dancing and singing she literally almost passed out from hyperventilation! Okay, maybe she didn't almost past out but saying she was thrilled out of her mind is an understatement. She most definitely had the best time of her life thus far - it was very cute to watch how wonderful of a time she was having.

(some pictures from the event: Sesame Street Live 2013 )

Jaylie is still not eating anything substantial but is requesting food and drinks more often. We are content with allowing Jaylie to grown develop and mature at her own rate (this is the recommend approach by Jaylie neurologist).

Jaylie is finishing up her first year of preschool next month. She started in Jan in the early intervention program. Since Jaylie started in preschool we have seen a tremendous growth in her speech, object identification, letter and sounds association, basically huge improvements in cognitive abilities. These cognitive developments are such a blessing to see. The Dr's have said they cannot give us any promise or prognosis on what Jaylie will and will not be able to do, so to see her growing and developing as a toddler is amazing, refreshing, encouraging and very exciting! One of the reasons we haven't put a blog together hasn't been because there is nothing to write about, it has been because we have been so busy living life, trying new things and growing as a family -- experiencing new firsts on a lot of different levels. We are so very grateful for all that God has given us and allowed us to experience. We are doing our best to soak it all up and enjoy these good times in the present :).

So yeah, we are doing great, Jaylie is doing wonderful! We are very much so looking forward to experiencing what this summer has for us!

Thank you all for your love, prayers and support. Jaylie really is a living breathing growing miracle, an ongoing story and testament to what prayer, support, perseverance and a touch from God can do to a life.

If you haven't met Jaylie, you really should, she'll change your life :)

God bless all you guys! I hope you have a great summer! I'll try to check in in less than 6 months, I promise :)

Love,

Nathan, Kristina and Jaylie

Recent pic's:

Jaylie - 3yrs 1month

Happy Holiday's everyone! I'm sure you've noticed the number of blog entries for Jaylie have diminished, which is a good thing :). We do not have anything super eventful to write about, besides Jaylie learning growing and developing at her own pace.

Jaylie is growing and developing well. Jaylie has yet to catch up with her peers but is growing and progressing very well. We visit Jaylie's Dr's every 3-6 months to perform checkups and evaluations on Jaylie's progress. All Jaylie's Dr's and Therapists are quite pleased with her progression and growth. The Dr's and therapist are encouraging us to continue doing what we are doing. We thank God for the progress Jaylie has and is making and for the skilled professionals God has brought into our lives to help guide Jaylie's growth and development - thank you Lord!

Jaylie is still not eating orally but does show a lot of interest in food. We are positive Jaylie will overcome her food aversion in the right timing.

We are very pleased with Jaylie cognitive and speech development. We are able to have simple conversation with Jaylie asking questions like "what's that?", "who's that?", "where are we?".

Jaylie absolutely positively LOVES music! Jaylie is infatuated with singing and dancing! Jaylie sings and dances with enthusiasm all the time. Jaylie loves music so much I had to bring the guitar out of retirement and learn Ole McDonald. Jaylie is enamored with the playing and singing of Ole McDonald on the guitar.




Jaylie is enrolled in a early education program. This state run program is designed to help children, like Jaylie, develop and catch up to their peers as much as possible before starting kindergarden. Through the early education program Jaylie starts preschool in Jan. We are excited to see what new things Jaylie will learn and be exposed to while participating in the early education program.

This year has been a great year for Jaylie. This is the first full year she/we have been able to live a more normal type of life, one in which we are not constantly battling some type of critical medical issue. We have had a couple of ups and down but overall are very pleased with this year.

We are reminded daily how blessed we are. Your prayer and support has sown seeds into our lives that have forever changed us.

Thank you so very much for your prayer and support!

We wish you all Happy Holiday's and a very Merry New Year!

Nathan, Kristina and Jaylie

Recent photo's:

Jaylie - 2yrs 11 months

This week we were hospitalized due to Jaylie being classified as a high risk patient and concerning behavior identified by the neurologist.

We were admitted into the hospital for a 48 hr video monitor EEG to identify whether the concerning behavior identified by the neurologist was neurological or not. The good new is the neurologist was able to classify the behavior identified as behavioral and NOT neurological (not seizure related but just plain ole 3 year old behavior).

This trip to the hospital has brought to our attention the appreciation we have for things like sleeping in your own bed and living in your own house...

We are thankful for all the prayer and support you all provided us during this event. Thank you!

This week was a reminder we are still on a journey of recovery and how miraculous the healing and growth God has provided Jaylie thus far is...

Thank you all for your prayers and support!

Nathan, Kristina and Jaylie

Jaylie - 2yrs 10 months

Hello! It's been awhile, my apologies for no updates in literally months...

The good new! Jaylie is doing very well. She is learning growing and progressing at her own rate. Nothing fantablulous to write about which is a good thing all things considered.

Jaylie is still seizure free (praise God!) woo woot!

Jaylie is talking more, running and eating more. Jaylie is still not eating meals or anything substantial nutritionally, but is eating non-the-less and progressing with her eating.

One of the challenges we have with Jaylie is sticking anything in her mouth without her gaging, this includes trying to use a toothbrush. I commented to Kristina the other day on how we need to figure out a way to brush Jaylie's teeth on a consistent bases. Kristina did some  research online on her iPhone real quick and came up with the idea of flipping Jaylie completely upside down so that her mouth stayed open so she would gag while brushing her teeth (Kristina got this idea from one of the G-tube forums she is subscribed to). Thinking logically I thought to myself, this could work, lets use gravity to help combat the gag reflex while we attempt to brush Jaylie's teeth :). Lo and behold, Jaylie absolutely LOVED being flipped upside down to brush her teeth! She laughed and giggeled all the while saying 'ahhhhhahhahhhh', it was great fun for all. Thought it takes two people, one doing the holding upside down and the other brushing, Jaylie absolutely LOVES brushing her teeth this way.

As Jaylie is around more children her age her developmental delays become more apparent. Where other kids her age are able to communicate and articulate thoughts, Jaylie is very happy and content to still explore and interact with her world in a more literal sense apposed to a more analytically cognitive sense. Jaylie being our only child actually masks and enables us to not focus on these delays because to us Jaylie is perfect just the way she is (learning and growing at her own place). Our ignorance is bliss mentality is reenforced by the neurologist whom has advised to set the expectations for Jaylie at her level of growth, not other children her own age...

Jaylie's progress overall is moving forward and is leaps and bounds from where we started and where the Dr's thought we would be.

We thank God and for all the answered prayers, wisdom, guidance and favor He has give us this far.

We thank you for all your continued prayer love and support! Prayer love and support really does change lives...

Here is a more recent picture of Jaylie: