Saturday, April 11, 2009

Be Prepared

I am sitting here trying to decide what to say. It's time for an update on Josh, but I am struggling with what to say. It's just one of those days where I want to say everything is hunky-dory... but it's not and therefore am not sure what to say.
I did take some pictures of him tonight, he was playing with the boys and laughing. It was so cute.
Anyway, today we went back to Primary Children's Medical Center for a Barium Enema. Yep... it was fun stuff. As I sat there trying to tell him I loved him and everything was OK, I got a little emotional. I usually am good at putting up a strong front during dr. visits, tests, therapy, ect. But today was just one of those days. I started thinking what if everything is NOT ok? What if Josh has to do more tests that are hard, painful and terrifying for him? I am emotional exhausted today with everything, and really wanted it to be done. But... fate had other plans. I rushed home to give my mother-in-law a break (she took the kids today to Baby Animal Days and had them for most of the day). About 15 min after getting home, Josh has a blow-out. He had a TON of Barium in his little body that had to come out. I just sighed and got to cleaning him up. As I am taking his clothes off, I realize his NG tube is covered in baruim/poop mixture. GROSS!!!!!! For those of you who don't know much about the tube, it is taped on his face, over his ear and then some more tape keeps it on his back, tucked into his shirt, and hangs down. Well it was down far enough that when the top of the diaper leaked... it got covered. Since he needed a new taping job that I had put off.... I realized I was going to have to take his tube out, replace it with a new one, and cause more pain. Oh... I just wanted the day to be done. It's days like these that I wonder what else can go wrong before I can go to sleep and start a new day.
But on the flip side, he is now OK and forgave me for all the pain of pulling off tape and sticking the tube down his nose/throat. He continues to amaze me with how well he can bounce back after a day like today.
So, for some updates now... he is still a ball of energy. He is all over the house getting into things he never had the energy for before his NG tube. He is not making any progress with the eating, but we kinda of figured that until we get the tummy issues figured out, he isn't going to want to eat. I am so tired of the constipation issue, I hope I can push to get it resolved in the next couple weeks. We will get the results of this test on monday.
Other than that, he is doing good. He is such a good boy and very lovable. He is really into giving hugs and kisses lately. We are so happy to see him being so interactive, it's just priceless.
Enjoy the pictures!

8 comments:

Tanya said...

you poor girl...up this late to talk about it! You need a hug!!
I am so sorry you both had such a hard day. that really stinks.
I just wanted to say thanks for sharing what happened and I hope tomorrow is brighter.
I'm so glad he's a happy, good boy thru it all.
We love you guys!!!

Amy said...

I have to say that Josh is the cutest little guy ever! I loved seeing you guys while we were there. It was the first time that I had seen him walking around. I even got some cute pictures of me and him. I'm am sorry that he has to have so many tests. I hope that you are least getting some information that will help from them. That way they at least are worth it. Josh is such a special little guy. I think he can take it all with a smile in the end. Hang in there sister! We love you!

Chantel and Brian said...

You made me get teary eyed reading this blog entry! You amaze me sis! You are such a rock in your family with all that you have to deal with. Josh is an amazing little boy too, always able to take whatever is given him. I hope some knowledge comes with these test results so you guys can take some action. Good luck with it all. I love the pictures. He's such a cutie.

maidmarian4 said...

Josh is such a cutie. Both him and your family are so strong. You are all great examples to others. (((HUGS)))

Shanda said...

what a resilient boy! I would be an emotional wreak If i were in his position, or yours too! You are a wonderful mother. Remember that! Not many people are as strong as you are being. Hes an adorable boy

Desiree and Lars said...

He is tough as nails isn't he. I figure after all the stuff he has been through already, nothing will phase him later on in life. What a special kid.

We'lll pray for God to send you some extra strength. When I'm down, I remember he will only give me what I can handle. And the fact that he has given you so much, says a lot about what kind of person you are...he knows of your strength. You and Scott are amazing!

Brittany said...

So sorry about this and and every other day that is hard. I can't even imagine. I cry when they get shots

Allie said...

oh Melissa!
I am so sorry you had a hard day. It is okay to cry. You are so tough and go through so much. Big hugs.