Update...and the flu :(

Merry Christmas everyone! I have found myself a little distressed right now
to be honest. Megan went in for a weight check and a check-up with her
pediatrician today and she lost two more ounces since Friday. She is now
back down to what she was back in October. My fear of them putting her
in the hospital for Christmas seems to be more real every day. Her GI
doctor wants to see her on Friday because her weight has been
consistently getting worse every week. We were told by her pediatrician
today that I probably need to pack a bag when we go to her appointment
because she might be admitted. I told him that we really wanted to keep
Megan at home for Christmas but he said that might not be an option. The
only thing about her being admitted is that they could go ahead and do
the muscle biopsy in the hospital while we were there. He wants that
done right away because he says it really makes sense and we have to
find a reason for all of this very soon. I also told him that recently
we had noticed she was yawning and just holding her mouth open a lot. It
is kind of weird. It's not just a normal yawn and she will do it back to
back. It's kind of hard to describe over email. Anyways, he said that it
could be lack of oxygen to the brain, apnea, any of those things and
they will need to look into that. It might be that she is put back on
her Apnea monitor which we kind of did not want but if it helps, then I
am all for it. Yesterday her Pediatric surgeon called and said they will
be changing out her g-tube button for a new one since they need to be
replaced every 6 months. Now, as most of you know the last experience we
had with this was horrifying. When she called and said they were going
to do it on January 2nd, I was relieved because this tube she has now
has run its course. Megan's tummy is very irritated and I have to put
water in her balloon at least once a week and they have to burn her skin
at least once a month lately. So, I was totally fine with them getting
her in that soon. Then last night I was lying in bed and I couldn't go
to sleep. I sat there and thought about how horrible it was watching her
in so much pain and remembering her blood hitting my skin and my face
wet from catching her tears. I was sick to my stomach. I know it may not
seem like a big deal but it is because it is our little girl. No one
wants to have to hold their child down and see a hole in their stomach
and know they are screaming horrifically in pain and because they are
scared. I just wanted to cry and I said Lord please take this feeling
away. Now getting this news today just doesn't make you feel much better
so I will say again Lord please take this feeling away. 

 

You know Christmas is a beautiful time of year. This year has been a
very emotional one for me. There was a time earlier this year that I
wasn't sure if Megan would even be here. I know there are so many people
and families out there in way worse situations than us and it just
breaks my heart. Jim and I have been so blessed more than we ever
deserve and I can't help but think just how much we have to be thankful
for and how much I should not be complaining or getting upset but it can
just be hard. She is our child and it's just so hard to watch her go
through this. You know, Jim and I are supposed to be getting ready to
pack up and head to my parents on Christmas Eve to spend Christmas
there. As most of you know from my earlier email, how much it means to
me to be there and help my mom cook and stuff. I was even more looking
forward to it this year because my mom and I would have an extra little
girl to help us, Megan. For years it has just been me and my mom and to
think that God blessed me with a little girl to add to our little
tradition just gives me goose bumps. The absolute one and only thing I
would love to have for Christmas is my family to be together at my
parent's house for Christmas. I should be getting things ready to go
there but I am terrified that I will be packing to go to the hospital.
To think of not being there when my boys get up on Christmas morning,
well it literally makes my heart hurt. So I am praying that God will
perform a miracle on Megan and give her some weight to gain so she can
stay home with us. It will be His will only and I will be thankful for
whatever He chooses but my heart really desires for her to be here with
us. There are so many families out there that are not able to be
together for many reasons and I just can't imagine. How heartbreaking it
must be for that mom and dad who just lost their child and this is their
first Christmas without them. Or what about that husband who lost his
wife and this is his first year without her and the families who have
members serving our country. There are countless examples and it really
makes me realize just how grateful and thankful I am for my family no
matter what. I know I will stumble and become sad and frustrated at
times. She is our daughter and we are her parents. But I now realize
that whether we are at my moms or at Scottish Rite, it will still be
Christmas and we will adjust no matter what and be thankful. I told Jim
a little bit ago that I just wanted to go up stairs, put my pajamas on
and sit there and pout. :-) Well, that is not what Jesus would do and I
know that God will renew my strength as He does and has done all along.
Thanks for letting us email you all about Megan. It seems that by the
end of my emails I really realize things aren't that bad at all. 

 

Thank you Lord for all our wonderful friends that we have met and the
people we have come to know better and our families and loved ones that
have constantly prayed, given and loved us more than we ever deserve.
Please watch over them and bless them and guide and direct them where
ever they need. If even one person comes to know You just a little
better than this journey is all worth it and we are thankful to be able
to be such a small part of it. You are wonderful and we thank you for
sending your Son to us and no matter what, you are Lord God Almighty!
Thank you for blessing us with amazing children who have endured so much
and yet been so strong. Thank you for this amazing little girl who truly
has Your hand on her. What a blessing she is to us. You made her just
the way you wanted and she is just perfect. Thank you for holding her
hand and catching her tears and ours. Thank you for standing right by
our side and then picking us up when we are so tired and fall to our
knees. Thank you for allowing us to laugh and giving us peace to just
enjoy every minute we have. Please protect her and guide us and the
doctors. We love you and honor you, our wonderful Father in heaven!!

 

Merry Christmas everyone. We love you all!!!



To add to this, Stacy sent this email out Tuesday night. At 1AM Wednesday morning, I came down with the flu, 
a few hours later Stacy caught it. Thankfully, neither the boys, nor Megan have caught it. If Megan were to catch this,
it would be a disaster. Take care everyone and Merry Christmas.


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JR