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:

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: