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 Our lives take unexpected turns every once in awhile. Sometimes these "turns"
turn out to be real blessings in disguise. One of these blessings in disguise happened
to me when I was seven months along with our fourth child. I felt
strongly that the Lord was letting me know that our child had Down Syndrome.
I wasn't even sure what Down Syndrome was, nor had I been around anyone
that had it. It was strange as I look back though, because I
named it exactly when I shared my feelings with my husband. We kept this
to ourselves until the day that Kaleb was born. In the delivery room I
reminded my husband again that the baby would have Downs. I thank God for
His perfect peace and grace.
This is Kaleb at 32 months.
This is a picture that was
included in an article written about me
that you may read by clicking this link
for The Oil City Derrick newspaper article on 7/8/00.
Kaleb is very animated,
they call him "the man of many faces"!.Born: 10/23/97
Although we have never been sad about
our son's disability, it has been both scary and overwhelming at times. Fortunately,
with God's unfailing love and our love for each other,
this has only served to bring us closer to our Heavenly Father.
Kaleb has been such a blessing in our lives! He is so sweet and
loving, as Downs are typically known to be. No matter what may be
different or unique about your child, you still love them as you would any
other. I had always refused the blood tests that the doctors typically
order about the 5th month that is done to check for Down Syndrome. They
are terribly inaccurate and nothing can be done to change the Down Syndrome
anyway, so why put myself through that? I just always wanted to enjoy
the pregnancy.
God has been so good to us as far as Kaleb's health
goes. He was in Children's Hospital several times for the first 4 months,
and has been relatively healthy since then. His heart is fine, for which we are grateful!
A high percentage of Downs children have many heart problems.
Our first scare was that his soft spots covered the entire top of his head.
Large soft spots are typical to Downs, but the doctor feared that his brain
was going to be injured, due to the fact that his did not close up right at the
time of birth. They immediately did an ultrasound, and decided he was okay.
The next problem that we faced was the lack of strength to nurse or eat.
I was not aware that Downs had such low muscle tone that they are not usually able to
nurse. I just kept wiping him down with cold cloths and "forcing" him to nurse. This turned out
later to work in our favor. Persistence paid off, and he did nurse, but it
took a full hour for him to feed each time! Then the jaundice set in. Due
to the ultraviolet lights, and as a result of the jaundice, he had to be nursed every
two hours round the clock. This was difficult on me, due to the full hour
it took him to nurse and then I would only have one hour off. At this time
he was sent to the NICU at Children's Hospital in Pittsburgh. We were so
grateful for this because they were able to do the chromosome testing necessary
for a Downs diagnosis, and all of the tests to check his heart and other
problematic areas for Downs. We felt Kaleb was in such good hands there.
They immediately started counseling us about his condition and the things we
would need to know about Down Syndrome. This is where the "overwhelming part"
kicked in! There was so much to know, and so many things that could happen!
We just decided to take things as they came. Kaleb has also suffered from many
breathing problems. He had what is called "strider". This is noisy breathing,
where Kaleb would gasp for air as he breathed. They put him in the hospital
to do a scope on all his airways and a lavage on his lungs. This was to
be just a day surgery and we would take him home after it was over.
When they let us in to see him afterwards, his oxygen saturations went extremely
low, and back to ICU we went! After this he was on oxygen and monitors for the first
six months. These would go off many times day and night, as he would have a problem
with apnea or his oxygen saturations being low. He could not gain weight for the first 5 months,
and wore newborn clothes and diapers until he was 5 1/2 months old. He was not processing
calories like he should. We had to start supplementing his nursing with
special high calorie formula. The other area we had major problems
with is reflux. Many times we would get him fed, only for him to
throw it all up just as quick! Kaleb still suffers from this, but not as bad.
He is doing very well in
his development. The biggest area he is behind in is his speech. We have four therapists that come to our home and work
with him. We work with him, doing the things the therapists teach us to do.
He used to hate physical therapy the most and would get quite mad at the physical therapist!
In the beginning it was terribly difficult to watch them do all of the exercises
they would do with him as he was screaming and crying for them to stop.
The only thing that made it bearable was knowing that they knew what was best
for him, and trusting them to do it. I think it is the same with God and our lives.
Sometimes we don't know why God might put us or someone else through something
that might be painful at the time, but we know as our Father, He knows what is the very
best for us, and we must just trust Him as He works in our lives.
Isaiah 55:9"For the heavens are higher than the earth, so are my ways higher
than your ways, and my thoughts than your thoughts." This is
sometimes easier said than done! I know that when I was dreaming about the baby I was
carrying, I wanted a boy, I wanted him to look like his daddy, there were so many
little things I was thinking would be nice. I never had Down Syndrome on
my list! God in His infinite wisdom, knew that we needed Kaleb,
and that Kaleb needed us. I know God will give us the grace needed to raise
him the very best that we can for His glory. In the hospital room, after our
meeting with the doctor that confirmed a Downs diagnosis, I looked at my husband
and said, "I think our ministry just took on a whole new dimension".
I found the background for this page after months of searching for just the right
one. The picture tells such a story. I feel like God has done, and
will do something great with Kaleb. He has brought alot of happiness to
so many people. He certainly knows how to make you smile! I feel
like the woman in the picture, as long as I keep my eyes on the Lord,
I will be the best mom to Kaleb I can be!
God is with me as I journey through this new
experience in my life. That's a great feeling!
Check back to this page often. I will change the pictures from time to time,
and give an update often of his progress.
NEW PROGRESS:
6/27/99 Kaleb started crawling today!!!!!! Up to this point he had always
just dragged himself along in an army crawl. He looks so cute!!!
NEW PROGRESS: 9/6/99 Speech therapy started on August 31st. He has learned to sign the words "more" and "eat". They will teach him
this along with the speech. He has also started walking behind his walker toy since moving into our
bigger house! Praise the Lord!!
NEW PROGRESS: 10/27/99 Kaleb is signing about 10 signs now.
He is also getting into EVERYTHING! He is still not walking on his own.
NEW PROGRESS: 12/4/99 Kaleb is doing so well with his
sign language! He is standing independently from time to time, but still
not walking on his own yet. Because of his low muscle tone, he feels like
he weighs a ton! I think my back may give out before he decides to walk!!!!!
NEW PROGRESS: 1/6/00 Kaleb walked Christmas Day!!!!!
We were all thrilled to be sitting in the living room and see it! It was
a great Christmas gift!
NEW PROGRESS: 4/3/00 Kaleb is signing VERY well. He also is doing better
with some eating issues we have been fighting. He still does not chew properly, but is improving
in this area.
NEW PROGRESS: 9/12/00 Kaleb has started saying a few words in the last two
weeks!! This has been an exciting breakthrough! It is really hard to believe that he will
be three 10/23. I can say that God's grace has TRULY been sufficient with all that we have been through.
NEW PROGRESS: 10/25/00 Well, Kaleb turned three!! I am really having a hard time with him
turning three. At this stage he has to transition to a whole new set of therapists.
This is hard to change and leave the therapists that you have grown to love and trust with his care.
All of the new therapists evaluate him on a whole new standard of tests, so they are evaluating
him alot lower than what the current therapists are evaluating him at. He also moves from the
nursery to a regular Sunday School class. I guess he is growing up whether I want him to or not!!!!!
NEW PROGRESS: 12/11/00 Kaleb is doing very well with the new therapists.
They are doing many new and different things with him. He is attempting to form words now!
He also has just performed in his first Christmas play. It was a moving experience to see
MY miracle baby in a play giving the story of Mary's miracle baby that came to save those that would accept Him!
NEW PROGRESS: 2/13/01 Kaleb will be having surgery 2/20/01 to have tubes in
his ears, and his adenoids removed. The two times that he has been under anesthetic, he had to be put in
ICU, so please pray for him!
NEW PROGRESS: 3/23/01 Kaleb did well through his surgery. He now is having problems with
recurring strep and it looks like he will have to have his tonsils out! I had begged them to do this when they did the adenoids!
NEW PROGRESS: 6/13/01 Kaleb FINALLY got over the strep! He is really starting to blossom
with his speech! I have heard him put two words together four different times now!!! He is
getting sooooo big!
NEW PROGRESS: 1/8/02 Kaleb had his tonsils removed
on 12/16/01. He is doing well. He had contracted strep 7 times this year! We are hoping this helps with his health. He is also
referring to people by name now! It is so exciting!
NEW PROGRESS: 1/25/05 Kaleb is now 7. His speech is still hard to understand.
He is otherwise doing quite well. Behavioral issues can be hard to deal with.
We homeschool him, and he is doing quite well!
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