Sunday, December 5, 2010


I am so excited that this year we managed to get all of our Christmas gifts purchased,
house decorated, lights hung, and the Holiday spirit started all by the first week of December.
What am I doing with my time now that all of that is done you ask...
Well, since you asked......
Making hairbows ..... 
turning oh so cute {Target} placemats into pillows..... 
making a wreath for Regan's teacher.
I got this idea from over at the Ballard Bunch.
When Regan woke up and saw it she got so excited.
True story: Jason has Thursdays off from work, so he takes the kids to school in the morning on these days. 
Well, I am looking for the wreath... hmmmmm.....
Yup, Regan took it to school and gave it to her teacher when Jason took her to school :) 

{This is a picture of Bubba during his evening feed and looking at the Christmas light.}
Lastly, my time will be filled with dr. apts. for sweet Bubba.

Since Buddy button came into picture Bubba has gained almost 7 pounds!!!!
I know crazy!!
Since his first surgery in June he has gained over a pound a month!!!
His typical weight gain is one pound a year.
Yes, HUGE difference.
Over all we have been very pleased with buddy button but there have been a few set backs.
Bubba now relies completely on Buddy for his food supply.
This was one of my fears.... he will not eat anything by mouth any more.
Now that he is no longer using his mouth it is starting to get "lazy".
The muscles are not being used and getting lazy.
At night Bubba is chocking on his saliva.
He is not swallowing and then it builds up and he gags,
coughs, chokes, and often times vomits.
Yes, no fun :(
His nurse thinks that we will be adding a new machine to his bed side.
I will need to start suctioning him through out the night.
So, we have a lot of doctor apts. to go to in the next couple weeks.
With the weight gain his medications need to be changed/ increased to keep up with him.
We also have to check on his little bones.
He has been having trouble and we have to make sure that
this weight gain hasn't put to much stress on them. :(
These are all things that we knew might be a possibility when we decided to put the button in.
We don't know what the future holds - but we know Who holds the future. :)


Sarah Hull said...

I love that last picture and I love that last line. Thank you for sharing that!!
You are amazing! Your family is amazing and your kids are precious!

Rachel said...

Girlie... you may have just inspired me to open up my brand new sewing machine that has been sitting in a box for eight years, LOL... that placemat pillow project looks like something even *I* could attempt! :) Yours are fabulous!

And you know - I will be praying. For God to balance those things and to bring health and wholeness to Bubba. Rejoicing in his weight gain and praying that his entire system will keep up with that great progress!
Praying for his muscles to remember to swallow and to allow him (and you!) to rest.

So thankful that you are enjoying the CHRISTmas season!

Kenny said...

Hopefully, some of that time will be spent with ME. Let's get crafty together! I really miss you. When I am no longer sick and a threat to sweet Bubba (or anyone else) we need to get together. It doesn't even have to be an evening since those seem to be getting harder to find. Mornings are good, too since I only have one kid most days.

As for Bubba and all of his little issues right now, yes we do know who holds the future and we know that He has a special place in His heart for that sweet boy. Love you!

Simply Sara said...

i wish i lived next to you and could come over for some crafty lessons :)

what joy that regan loved the gift you made her teacher so much that she took it to school right away :)

praying. always praying for your sweet family. may His strength carry you through the unknown.

Susan said...

Love all your craft projects. I think I need to go to Target and get out the sewing machine! Once again, you took a photo that just took my breath away. Doing it in black and white made the photographic artistry even better. Bubba and his beloved Xmas lights—I'll never forget that picture or the story! You are in my prayers. That includes prayers of gratitude that Bubba has the loving, attentive, appreciative family he has. In this season of focus on children's holiday wishes, I think we all have a sensitivity to the stories of children who have deplorable loveless existences. To see a child like Bubba, who has such difficult, and growing, challenges, and yet has such huge love and unselfish care from his family warms the heart and makes me wish every child could know the security of that kind of love. You are truthful about your own challenges here, but your faith still trumps your frustration. You're an inspiration, for sure.