Fwd: Update

January 4, 2007

Update

JD has been home for a week now and is slowly beginning to get back to his old

self. He isnt there yet but we can tell he is getting somewhat better. He is

still somewhat quite sluggish sometimes and he gets tired very easily. Today,

JD had his helmet checkup and it went well. Tomorrow he will get his next round

of RSV immunizations. Next week he will see his pediatrician for a checkup and

shots and he will pay a visit to vent clinic and his old doctor friend Dr.

Gelfand to check on his progress.

We have continued to learn more since JD has gotten home from the hospital

during the Christmas holidays. JD is gaining weight at a more steady pace and

we are suspecting that he will soon be king of the weight gain as he just might

overtake his sister in weight. Olivia went for a check up with the pediatrician

this week and to check on the status of her recent RSV infection. Olivia is

getting better, her bronchial asthma is still there but somewhat better, and her

inner ear infection is much better. Olivia will continue to be on medications

and steroid respiratory nebulizer treatments through the winter and we will be

seeing Dr. Gelfand soon to evaluate her asthma. Olivia weighed 23 lbs 9 oz on

her visit and we suspect JD is close to 23 lbs in weight. So he just may catch

her in weight soon.

As of today, JD reached two big milestones as reported to me by one of his day

nurses today. JD sat unassisted for the first time today by himself. JD also

rolled from side to side today without assistance. You cannot imagine just how

big an accomplishment that was for him. We have suspected for a very long time

that JD is very intelligent because he tends to pick up new skills quickly. He

just picked up two more which are huge. We can now continue to work on him

sitting unassisted for longer periods of time with the hope that JD will begin

to be tolerant to bearing weight and standing soon. I was moved to the point of

tears when KoCo his nurse reported to me of the milestones JD had accomplished

today when I was home for lunch. We have hoped for along time to learn that JD

can indeed sit by himself without assistance. In fact, when I called Mandy to

report the news she was very excited and I knew she was as emotional as I was.

There have been so many improvements since JD has gotten home despite the up and

down roller coaster that Mandy and I go through with our emotions as related to

the medical health of JD. But I can say this, there is no doubt that God is

continually providing the doctors and nurses to care for JD to allow him to

reach these milestones. Every milestone that JD reaches is a testament to the

healing power and the unbelieveable power of our Lord Jesus Christ whose love

for us surpasses all of our understanding; it is indeed an unconditional love

that we do not deserve because of our ability to want to control and because of

our sin issue but still we are provided with this gift of love, mercy and grace.

Through the work of God, JD is becoming stronger and is becoming the young man

that we prayed for when he was given to us by God. Yes, Mandy and I still

struggle and every day is not the best day for us but these days are becoming

more positive than they are negative. There is no doubt in our minds that God

will continually work through the lives of all of the staff and us who are

caring and working with him so that JD can become a little boy with few medical

issues that he was born with, and then become a teenager and a young man with a

very good quality of life.

Thanks be to God that He continually is showering us with blessings in the lives

of our children who only He has given to us. Olivia is learning to walk on her

own. JD is getting better. Yes, he is still on the vent and will be for some

time but our spirits have been uplifted this week as we have begun to see the

power of Jesus Christ work in the lives of our children. Yes, I am still

struggling with JD being on the vent after he was doing so well off of the vent

but I have been renewed in the fact that all of these medical complexities ( the

vent, the trach, the g-tube etc.) will disappear according to Gods plan and His

will and according to when JD is ready to meet these milestones. JD and Olivia

are beautiful examples of the love, power, grace and mercy that our Lord

provides if only we will choose to let Him be in control of our lives and

believe in the one that He has sent to be our savior and have a relationship

with us.

We will update you when we know more. Work continues and progress is being made

but still more work needs to be done. JD is making progress sometimes just it

is more slow then what we want but he will make it and he is going to make it.

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

you.

In His loving hands and still holding onto that rope,

, Mandy, Olivia (almost 16 months) and Barton (cHArgEd almost 16

months)

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January 4, 2007

Two big " Yea's! " for JD. There are two baby toys that really helped Evan gain

trunk strength: 1) an Exersaucer and 2) the Incrediblock.

After he could sit unassisted, we started playing with him in the

Exersaucer--at first we had to fold some extra blankets to prop him up until he

got strong enough to hold himself up. This is one toy that different therapists

will have different opinions on--most therapists seem to not like them (same

with walkers). But I can't think of any other toy that would have helped him

develop trunk strength, and sitting and reaching, bouncing on his legs quite the

same way.

The Incrediblock is an activity center that is an approximately 16 inch cube.

It has activities on all sides, so before he could get " up " Evan would play with

the stuff on the sides. Then we started kneeling him up against it. Then we

progressed to standing against it, and he would play with the activity on the

top (hands down, the most entertaining one!). Pretty soon, he could sit on your

leg and using the incrediblock pull himself up to a stand. Now he can sometimes

(read: when he feels like it) pull himself up to a stand from the floor, and he

will push it around and take steps behind it. I don't think the Incrediblock

was designed to be a " walk behind " toy, but unlike a lot of the other push-cart

type toys on the market it doesn't have wheels and it's heftier, so it won't

slide away from Evan. Plus it comes with a set of peek-a-blocks that activate

music and lights--Evan still likes these even if he can't hear the sounds.

(mom to Evan 17.5 months)

erin32573@... wrote:

Update

JD has been home for a week now and is slowly beginning to get back to his old

self. He isnt there yet but we can tell he is getting somewhat better. He is

still somewhat quite sluggish sometimes and he gets tired very easily. Today, JD

had his helmet checkup and it went well. Tomorrow he will get his next round of

RSV immunizations. Next week he will see his pediatrician for a checkup and

shots and he will pay a visit to vent clinic and his old doctor friend Dr.

Gelfand to check on his progress.

We have continued to learn more since JD has gotten home from the hospital

during the Christmas holidays. JD is gaining weight at a more steady pace and we

are suspecting that he will soon be king of the weight gain as he just might