Jaylie - 2yrs 6 months old

Jaylie is doing very well. She is growing, maturing and developing at a steady pace. The Dr's are pleased with her growth and development rate, all things considered.

We are still working with Jaylie on eating. Jaylie has made tiny baby steps but is NOT eating substantial amounts food yet.

Jaylie is still very social. Jaylie is learning to communicate more letting us know she wants to do specifics things like reading books, playing or watching Elmo.

At our last Dr’s visit Jaylie was within the 51 percentile for height, weight and age which is the first time I can remember Jaylie being anywhere close to a ‘normal’ percentile!

We are very pleased and overjoyed with the countless hurdles God has enabled Jaylie to overcome in the last 2 1/2hrs.

If you recall, last June I wrote about us transitioning off of vigabatrin and there being a 50/50 chance of the seizures returning -- we have gone a year without an seizure activity! Praise God!

Jaylie’s journey has been wonderfully miraculous, extraneously challenging and incredibly amazing.

Thank you SO much for your prayer and support. We believe we would not be where we are today without it -- thank you again so very much!

Nathan, Kristina and Jaylie

Most recent pictures:

Jaylie - 2yrs 3months old

Jaylie is still seizure free and doing well, praise Jesus :). During our last visit with the Neurologist (in Jan) the neurologist advised Jaylie was doing really well and she (the Neurologist) was very happy to see Jaylie's progression overall.

We are still working with Jaylie on eating and physical therapy on a regular bases. Jaylie is still not eating food but we are slowly making progress with eating very small amounts of foods and drinking very small amounts of liquids.

Jaylie does gymnastics (free form play group in the gym) and group play session therapy along with her regular OTPT therapy.

Jaylie is saying words now like 'down','bubbles', 'WOW', 'Oh', 'Uhoh' and some other babels.

Jaylie is starting to show some shyness and appreciation towards some things, an overall new awareness of her surroundings.

Jaylie is up and motoring around, climbing up on couches and smaller items.

Jaylie really likes to dance! To quote her Aunt Amy "She's got rhythm". Jaylie likes to dance to all kinds of music and is showing a lot of interest in play music.

We are really pleased with Jaylie's overall growth and development. We look forward daily to supporting, teaching and learning alongside Jaylie as she continues to grow and develop.

Thank you for your prayer and support, we very much appreciate you all (and most especially Grandma Debbey :) )

Nathan, Kristina & Jaylie

Some recent pictures:

Jaylie - 2yrs old

Happy holidays!

Jaylie is doing well. She is up and walking around now. No more crawling :).

Jaylie is continuing to grow and develop. We have made some progress with eating and drinking but not enough to where she is eating and drinking regularly. Jaylie still takes little sips of stuff and itty bitty tastes of stuff.

Jaylie LOVES to read books at the moment. She will pick a book up and come waddeling over to whomever will read it to her as fast as she can. As soon as you are done reading the book to her she waddels over to the books as fast as she can, gets another one and comes right back as fast as she can :). It's adorable watching her get so excited about reading books.

Christmas has come and gone. Jaylie was very blessed and received many gifts from friends and family -- thank you very much!

Jaylie has shown some interest in opening gifts but no major excitement. The gift she was most excited about this year was a soft fluffy butterfly pillow pet from her aunt Amy. Jaylie shook, screamed with excitement and then bit it's nose upon opening it and feeling it's soft fluffy cover. This was Jaylie's first healthy Christmas of which she thoroughly enjoyed -- thank you all for helping to make it so!

We are days away from the completion of 2011. 2011 has been a wonderful year for Jaylie. We hope pray and expect many more positive years and even better years to come (positive thinking really does work :) ).

Thank you all for your prayers and support! We could not have gotten to this point without them. We are eagerly looking forward to what the future has in store for us.

Happy New Year everybody!

Nathan, Kristina and Jaylie

Pictures of Jaylie's second birthday party: Jaylie's 2nd Bday Party


A couple of recent pictures:

Jaylie - 23 months

Jaylie is doing really good. She is up and walking to the best of her abilities, very vocal and making audible sounds to communicate likes and dislikes.

Jaylie has made some slight progress with putting food in her mouth. She has tasted popcorn and gummy bears on her own but hasn't eaten anything yet. Jaylie has made some improvements in drinking some liquids as well.

We went to Children's hospital today to meet with the Neurologist and Nutritionist.

Both the Neurologist and Nutritionist were very pleased with Jaylie's growth and development since they saw her last (in April of this year) and encouraged us to continue to do whatever it is we are doing because it is working well -- thank you Jesus!

The Nutritionist mentioned we could start feeding Jaylie some blended foods and gave us some material on how to formulate and prepare blended foods properly. I am super stoked to try some blended food stuff! We have a super blender (not the official name) from blentec that will turn anything into liquid :). I am excited to get to use it to blend up foods for Jaylie :)

Jaylie growth and development is on the 'regular' 0-2 years old growth charts (woot woot!). She is in the 3 percentile for height and weight and the 40th percentile for length to weight proportion -- Jayile is growing well at a normal pace :)

Jaylie will be 2 years old here on the 18th! Wow, can you believe it's been 2 years already!?!

On Nov 19th Jaylie will have her very first 'healthy' birthday! We are super stoked to be able to have and host a birthday for Jaylie during which we don't have any major medical issues to be wary about!

Jaylie is infatuated with Elmo and Curious George right now so we are going to have an Elmo themed birthday party.

If you would like to attend Jayile's 2nd (but really her first health) birthday party please send Kristina and email so we can get you an invitation. Kristina can be reached at: kjeffre < at > gmail dot com

Thank you all for the prayer and support, it really has paid off!

We really appreciate your prayer and support!

Hopefully you can make it to Jayile's 2nd birthday party, if not, we wish you all the best and Happy Holidays!

Sincerely,

Nathan, Kristina and Jaylie

Here are a couple of recent pictures:


Above picture taken by our good friends Mike and Sara Kippen. If you need any photography or videography work done, Mike and Sara @ mkippen.com come HIGHLY recommened! Check out their site for more info: http://www.mkippen.com


The below are curtosy of the dearly beloved Steve Job's and his/my iPhone

Jaylie - 22 months

Jaylie is doing well. The visit with the neurologist went very well. The neurologist was very pleased with Jaylie's overall development and growth -- in-fact, the neurologist was ecstatic with Jaylie's overall growth and development :) God is good!

Jaylie growth is starting to show up on the growth charts, yay!

Are part of Jaylie's physical therapy, the therapists decided Jaylie needed some orthotics for her shoes to help with stability in her ankles. Since Jaylie has been wearing her orthotics, her stability has improved greatly, she has even taken some steps on her own! It is only a matter of time before she is walking around, woot woot!

picture of the orthotics:


Jaylie is starting to make some word to object association. Jaylie really likes computers, iPads and iPhones. We have a bubble game on our iPads and iPhone. Jaylie loves the bubble game and says 'bubble' while playing it.

Jaylie playing on her keyboard:


Jaylie is taking baby steps towards eating. She puts some food objects in here mouth like chips and some other things but does not chew them nor swallow them. Jaylie will drink very very small drops of some liquids sometime, but drinks them non the less. The Dr's say it may take Jaylie several more years to start eating regularly (boo...).

On a not so fun note, Jaylie has decided she doesn't like to go to bed anymore. Every time we start to get her ready for bed she starts to cry and gets really upset -- no fun at all, but a good sign as she is expressing she self and her dislikes :D

Overall Jaylie is doing really well! Thank you Lord!

We are coming up on her 2 year birthday, can you believe it!

Our 1lb 3oz 11inch Jaylie is now 24lbs 31 inches!

Jaylie has been seizure free this year, thank you Jesus!

Please keep Jaylie's development and growth in your prayers, it's working!!! :D

Thank you so much for your prayer and support!

Nathan, Kristina and Jaylie

Jaylie - 21 months

Jaylie is doing well. She is growing and learning.

Jaylie's oral feeding is still progressing, though we still have plenty of work to do.

We have another appointment with the Neurologist next month to discuss the MRI Jaylie had last month to look at her hippocampus growth and white matter effects from the vigabatrin use.

To-date, there has been no seizure activity which is absolutely amazing and a true answer to prayer!!! If you remember back several months ago, the Neurologist advised there was a 50/50 chance of seizures coming back. I know we are only a couple months out from completely coming off vigabatrin, but everyday that is seizure free is a blessing, thank you Jesus!

We've had a good summer thus far. We've done a couple of cool things with Jaylie including her first road trip and jetboat ride. Jaylie had a great time on the road trip, and half of a great time on the jetboat :)

Thank you for all your prayer and support! You are amazing!

Nathan, Kristina & Jaylie


Here are some new pictures of Jaylie. She is getting bigger, pretty amazing when you think about how far we have come eh :)

Jaylie - 19 months - Vigabatrin Month 6 (Last month)

Jaylie is doing well, still growing and developing. We are still working with Jaylie on walking, talking and eating. Jaylie is not eating anything by mouth. We are hoping this will change when once we completely taper off the vigabatrin here in a couple of weeks. The plan is to continue on the zonisamide. The neurologist advised tapering off the vigabatrin has a 50/50 chance of seizures returning. A 50/50 percentage is not a good percentage when you are referring to seizure activity... Thus far we have not see any seizure activity pop up, praise God!

Jaylie is continuing her weekly occupational therapist and an oral therapist visits.

Jaylie is motoring around the house (crawling) and pulling her self up on everything we let her.

There is no real major news to report, which is actually a really good thing :). It is nice to have a somewhat 'normal' period of time without any major events happening, praise the Lord!

The eye Doctor wants Jaylie to wear some corrective eye glasses, if she will wear them, to address a slight issue with her right eye but said it would not be a major issue if Jaylie decides she does not want to wear them.

Please continue to keep Jaylie's development, growth and health in your prayers. We are praying God would complete heal Jaylie of all seizure activity.

As always, thank you SO much for your prayer and support!

Nathan, Kristina and Jaylie

Here's a new pic with Jaylie's new frames (the lens' are on order).