JD Update

April 10, 2007

JD seems to be having better days. He is still not out of the woods with his

lungs as another cold spell hit Easter weekend. JD and Olivia both do not

handle changes in the weather very well. However, we have noticed some more

improvement and we think and are crossing our fingers that Dr. Gelfand (his

pulmonologist) will clear him for nose surgery and that Dr. Brown will feel

comfortable with his health to go in an open his nose and allow him to breath

through his nose for the first time. We firmly believe now that this surgery

will

allow JD to get off the vent for good, and open up the discussion as to when he

can have his trach taken out (decannulation). we still just arent sure if

what we have awaited for for so long will take place in the near future. Most

of it depends on JD's health. JD is still coming along in therapy. He can now

sit by himself for longer than a minute. Today, we noticed him reach and

remove pegs from a peg board. He did this several times and what he didnt reach

for he just slapped at and knocked over. Still quite an accomplishment for

him to be reaching for things when placed in front of him. He is still working

on rolling over onto his tummy and rolling from his belly to his back. He can

roll to the side very well. We have noticed JD being more willing to sleep

on his side at night. And then today the big thing. JD took a peg out of the

peg board and put it in his mouth. He has never done this. Quite an

accomplishment as it seems he is getting used to things being in his mouth

besides

his fingers. The little man may be eating by mouth quicker that we had hoped

for at first.

Despite the strides with our children, sometimes and I get completely

bummed about their medical situation. I sensed a small letdown in Mandy on

Sunday as she struggled with some things going on with JD that day. I guess

last

night and this morning was my turn to have the " let down " . I realize there

was no reason and I know most of you if not all who read the updates that I

send can not possibly fathom what it is like to experience what we do everyday.

It is truly life or death everyday in our household just like in the ICU at a

hospital. One mistake in care can be very costly. So I guess my thoughts

caught up with me today. I got to the point where I thought maybe it was going

to be like this the rest of our lives and that is okay by me, I thought maybe

JD wont get off the vent, maybe JD is supposed to be trached his entire life

and maybe JD wont get to have the life that other children have. But then in

all of that mass confusion and troubling thoughts God in His own way spoke to my

heart. Now I didnt hear Him audibly but those of you who understand what I

am talking about know when you can just sense an unmistakeable presence that is

God. God spoke to me in a way I had never heard before or perhaps in the

past I just wasnt listening. His message was clear in my heart, it was ,

you cannot even imagine or have no idea just what I have planned for JD, you or

your family. My perfect will is being revealed to you in my time. Suddenly,

it all made sense to me. JD is here for a reason. Every day that both of

them are here are according to His will. In a way, He told me relax, I have all

of you in My hand and you just enjoy the ride. I dont know but the thoughts

of what was revealed to me today are still sending chills down my spine. God

was with me and spoke to me and maybe for once I finally understood it. Are we

not reminded as Christians by in 1 Corinthians, " No eye has seen, no ear

has heard, no mind has conceived what God has prepared for those who love

him. " What I experienced today only made some of the things that I have been

thinking about through the works and messages of seem more true.

It doesnt matter what happens to us as Christians, either way we win. We have

been made spiritually alive and free from the bondage of our sin problem. We

have been made alive in Christ now and He changes us and He guides us. We,

who put are faith in Him, are alive now and experiencing Eternal Life if only a

small fraction of what we will experience in the future. Our faith must rest

in Him and He takes the reigns and reveals to us His plan.

I apologize for the length. This started as an update and then seems like it

ended in a spiritual journey but I just had to relate the amazing experience

I had today along with what is going on with JD. I cannot explain what

happened. God reached me in a way that He had never done before or I finally

let

Him do it. We will update more as we know more. Keep praying and keep

believing. A miracle continues through the work of God daily. We will send

more news

later. Hopefully continued good news. Until then Mandy and I both remain as

servants to a risen Lord, who is Christ Jesus. We continue to remain In His

Grip.

May the peace, power, love, grace and mercy of our Lord Jesus Christ be with

each of you.

In His Loving Hands and still holding onto that rope,

, Mandy, Olivia (almost 19 months) and Barton (almost 19

months)

************************************** See what's free at http://www.aol.com.

April 11, 2007

hello,

I'm just wondering does the doctor know about there were tissues and bones knot

together back of the sinus should be taken off? It should help him to breath

through his nose, hopefully I read your story correctly. Michele S.

JD Update

JD seems to be having better days. He is still not out of the woods with his

lungs as another cold spell hit Easter weekend. JD and Olivia both do not

handle changes in the weather very well. However, we have noticed some more

improvement and we think and are crossing our fingers that Dr. Gelfand (his

pulmonologist) will clear him for nose surgery and that Dr. Brown will feel

comfortable with his health to go in an open his nose and allow him to breath

through his nose for the first time. We firmly believe now that this surgery

will

allow JD to get off the vent for good, and open up the discussion as to when

he

can have his trach taken out (decannulation). we still just arent sure if

what we have awaited for for so long will take place in the near future. Most

of it depends on JD's health. JD is still coming along in therapy. He can now

sit by himself for longer than a minute. Today, we noticed him reach and

remove pegs from a peg board. He did this several times and what he didnt

reach

for he just slapped at and knocked over. Still quite an accomplishment for

him to be reaching for things when placed in front of him. He is still working

on rolling over onto his tummy and rolling from his belly to his back. He can

roll to the side very well. We have noticed JD being more willing to sleep

on his side at night. And then today the big thing. JD took a peg out of the

peg board and put it in his mouth. He has never done this. Quite an

accomplishment as it seems he is getting used to things being in his mouth

besides

his fingers. The little man may be eating by mouth quicker that we had hoped

for at first.

Despite the strides with our children, sometimes and I get completely

bummed about their medical situation. I sensed a small letdown in Mandy on

Sunday as she struggled with some things going on with JD that day. I guess

last

night and this morning was my turn to have the " let down " . I realize there

was no reason and I know most of you if not all who read the updates that I

send can not possibly fathom what it is like to experience what we do

everyday.

It is truly life or death everyday in our household just like in the ICU at a

hospital. One mistake in care can be very costly. So I guess my thoughts

caught up with me today. I got to the point where I thought maybe it was going

to be like this the rest of our lives and that is okay by me, I thought maybe

JD wont get off the vent, maybe JD is supposed to be trached his entire life

and maybe JD wont get to have the life that other children have. But then in

all of that mass confusion and troubling thoughts God in His own way spoke to

my

heart. Now I didnt hear Him audibly but those of you who understand what I

am talking about know when you can just sense an unmistakeable presence that

is

God. God spoke to me in a way I had never heard before or perhaps in the

past I just wasnt listening. His message was clear in my heart, it was ,

you cannot even imagine or have no idea just what I have planned for JD, you

or

your family. My perfect will is being revealed to you in my time. Suddenly,

it all made sense to me. JD is here for a reason. Every day that both of

them are here are according to His will. In a way, He told me relax, I have

all