Happy 2nd Birthday, Jane Madelynn!
It is so hard to believe that Jane Maddy is 2! It seems like just yesterday we were heading
to the hospital to have her. So many of
you have prayed for her and rejoiced in her victories over the last two
years. We are so thankful for your love
and support. I realize I am not very
good at giving updates so I thought I would take this time to give a quick one!
For those of you who don’t know Jane Maddy’s back story,
here is a quick summary.
The day after Jane Maddy was born, the doctor’s told us that
she had a life threatening condition. Most
kids with her diagnosis live only 1 week to 1 year. We should just take her home and love on her.
There was nothing they could do. When we
left the hospital with her 2 days old, she had not eaten. With the help of our wonderful pediatrician,
we learned to feed her with a syringe.
He agreed that she had the signs of Edward’s Syndrome. With the test
sent off, we were forced to just watch her and wait. When she was 6 days old, we took her to our
church where our pastor and the entire church prayed over her. The next day we received the unbelievable
news that her test was negative. Since
that day, she has continued to baffle the medical world. She still has all the outward signs of a
genetic syndrome. However, the tests all come back negative. We firmly believe that God healed her and
just left some of the outward signs to remind us of His amazing grace.
Over the past two years, we have watched her grow and
develop and amaze her doctors. They told
us she might not ever walk or talk. Now, she runs and never stops
talking!!! She is a little miracle.
Right now, we are just monitoring her growth. We did get a
new diagnosis from the geneticist but it is a syndrome with only like 100 known
cases in the world. Mark has banned me
from looking it up and reminds me that at this point it is a guessing game.
Even if the geneticist is right, there is a wide spectrum of cases. In other
words, no more googling it! Lol She
has been released by a lot of her other doctors. They simply can’t explain
it! She still has her gtube but if we can keep her
weight increasing and make it through the winter without using it, they will
remove it in the spring.
A few specific prayer requests include her foot and her
speech. Although she is walking, she has
a flat foot and it turns out. It is
possible that by spring they will have to do surgery to help correct it. Her speech amazes me every day. However at
some point, she will probably need speech therapy and possible correction of
the cleft palate.
To be completely honest although things look really good for
Jane Maddy right now, I still often times wonder “why?” “Did I do something wrong? Was it the diet
coke? Were the baths I take too hot?”
and on and on. During these 2 years, God has taught me so much. Just today, I was reading John 9 and the
story of Jesus healing the blind man. It
says,
John 9 As
he went along, he saw a man blind from birth. 2 His disciples
asked him, “Rabbi, who sinned, this man or his parents, that he was born
blind?”
3 “Neither
this man nor his parents sinned,” said Jesus, “but this happened so that the
works of God might be displayed in him.
Wow! God showed me the why? God chose our family and our little Jane
Maddy to disply His mighty works. I
don’t need to ask “Why?” anymore!
