Saturday, January 14, 2012

Just keep swimming..........

You know what you gotta do when life gets you down?
Just keep swimming
Just keep swimming
Just keep swimming swimming swimming
What do we do we swim, swim, swim
OH HO HO How I love to swim
When you WAAAAAANNTTT to swim you want to swim
 

I have been singing this Nemo song over and over this week. Regan thinks it’s pretty funny.  

“The only way to get through life is to laugh your way through it. You either have to laugh or cry. I prefer to laugh. Crying gives me a headache.”  Marjorie Hinckley.

Bubba and I have had a lot of dates lately and not the fun kind. If you are my friend on FB than you have probably seen lots of check in’s or comments for the hospital or dr. offices.  They are worried about Bubba. I am worried about Bubba. This year has not started off how I would have wanted it to; it is going to be a hard one. We know of one surgery that Bubba will be having soon. There are LOTS of tests that Bubba will need. We won’t know our game plan until we meet with another dr. on Monday. Bubba’s other dr. is waiting for this apt. so that they can coordinate their tests and surgeries to limit the times Bubba has to be sedated. Basically what it comes down to is that they are worried about Bubba’s tummy, lungs, and heart. That’s right y’all my little man is getting old and his body is not being nice to him. I know that TTD is a mean and progressive illness but it is hitting Bubba’s little body fast and hard right now. I am grateful for the AMAZING team of doctors that he has. I trust them and feel blessed that after 11 ½ years of doing this we have built a good team to take care of Bubba. I am grateful for the sweet team in Maryland at the NIH. They have been getting LOTS of frantic phone calls from me and they do all that they can to help. This week I have gotten ANGRY, I have cried, and I have found peace in what the future might be for Bubba. Things are going to change and that is OK. With all of this change there are some things that are constant 1) Bubba’s sweet smile and attitude 2) My little family  and our love for each other 3) My faith and testimony in a loving Heavenly Father that has been there to comfort me with each new challenge in Bubba’s life. I will share more about what is going on with Bubba once I know exactly what our first step will be. We have had some hard, pain filled, days BUT we have also had some pretty awesome ones as well. So, rather than go into all of the crummy details of the bad days I will share with you pictures from a good day. 

Today Bubba woke up feeling good. Hubs was working and I was feeling brave. So, we went on an outing with some friends to the Aquarium of the Pacific. Pretty fitting since my mantra for the week has been…. Just keep swimming.  Enjoy!









5 comments:

Kristin said...

Julie I love you and your positive attitude. More than anything I LOVE Bubba's sweet smile in those pictures. He is such a trooper. I am glad you guys have such a great team of doctors. I hope they take good care of you guys this week! Just keep swimming girl... And I'll keep praying!!!

Susan said...

Your positive attitude is something that I love and admire about you, too, Julie. But I'd also want you to know that it is just as meaningful when you show us the reality of your life's greatest sadness.......knowing that we won't run to hide from it, but will send our prayers to swim and swim and swim around you. We have such high hopes that Bubba's team will be able to help him, and that you, at the very least, will be able to have a pain-free little boy who can keep smiling that precious grin. It's still the sweetest grin I've ever seen.

Karen said...

I'm at a loss for words...just know that I'm here praying for your Bubba and sweet family!
Hugs and prayers,
From Wisconsin

Rachel said...

Have been incredibly swamped and underwater here for a bit - sorry so long to catch up.

We are still praying. And so thankful that you have Bubba and Bubba has you.

I don't understand, but I am thankful that our Heavenly Father knows it all - has ben there - and has conquered the worst that we can fear. Praying that His peace guards your heart and minds in Christ Jesus.

(And that you know just how much you delight Him).

Alan C.Bailey said...

Unquestionably believe that which you stated. Your favorite reason appeared to be on the net the easiest thing to be aware of. I say to you, I certainly get annoyed while people consider worries that they just don't know about. You managed to hit the nail upon the top and defined out the whole thing without having side-effects , people could take a signal. Will probably be back to get more. Thanks
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