I’ll always remember the date 12/12/12. It was the day we found out Noah has Lowe
Syndrome. As you know, I’ve suspected it
for a long time and we finally had him tested.
I was on the way home from taking Isabella to school when I got the
phone call from the doctor that the test results were finally in. I decided to pull off into a shopping center
while I got the news just so I could concentrate on what I was hearing and when
I heard it was positive for Lowe, I broke down and cried. I knew I would. It’s one thing to suspect. It’s completely another when you know for
sure.
I waited until I got home to tell Jeremiah, so we’re both in
a mode of realizing this is real and our son has a syndrome that could give him
an early death. No one wants to see
anything “wrong” with their child. I
know he’s developmentally behind and he has Glaucoma but he’s also the happiest
baby I’ve ever encountered. The way he
grabs my face and gives me (his version) a kiss on the cheek or how sometimes
when I’m holding him, he holds me tight, like he never wants to let go. I know that’s Noah’s way of telling me he
loves me. His sweet, sweet, smiles and
laughter, and the way he loves on me, I can’t really ask for more. I just don’t want anything to hurt him.
Now, I guess we need to continue seeing doctors to monitor
his health but now my mission is to find out if there are other doctors he
needs to see and we need to get him on the right diet. He’s still having issues digesting and going
to the bathroom. It just breaks my heart
to see he wants to go and he just can’t.
We went through that again last night.
I have begun putting a tiny amount of kids laxative in his Pediasure,
just so he can go but I hate doing that.
I want to know WHAT he needs to eat just so he can go to the bathroom
like a normal child. Just changing the
flavor of the Pediasure stops him up and I just don’t understand that. Well, I guess I somewhat do now, knowing his
has this syndrome and that must have something to do with it since he can’t eat
food normally like other babies and digest it the way he needs to.
I’ve been in the mindset of “He may have this syndrome” but
now I’m trying to readjust my thinking to “He does have this syndrome” and go
from there. My husband and I both felt
we were in sort of a fog yesterday, trying to digest what we had just found
out. Well, that was after the tears from
both of us and each wanting to take some blame as to why Noah has this syndrome
but we both know we didn’t cause it. It’s
just one of those things that if we could, we would trade places with our son
in a heartbeat. Period.
All I want for Noah is to continue to be a happy boy and to
always feel loved. This blog will
continue. Now, it will be about how he’s
doing with this syndrome and the road(s) we travel to get the best care for him
possible.
Thanks to all who have read this blog and kept up on his
progress. Please keep him in your
prayers. He’s the sweetest little boy in
the world and deserves all the love we can give him.
Trying to stay in the moment,
Jenna