Monday, December 31, 2012

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:

Sunday, October 21, 2012

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

Thursday, September 27, 2012

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:

Sunday, June 10, 2012

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:

Monday, February 27, 2012

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: