Saturday, December 27, 2008


Daddy and Maryam...all bundled up to go outside.
Maryam eating her breakfast....note the the tray is empty of any and all Cheetos!! Hooray! She ate 12 at Breakfast today!

So, now for the news that I've been dreading writing about. You probably read the blog entry on Wednesday about having to take Maryam to see her GI doc. He wanted to examine her to help us figure out why her Mic-Key button was causing her so much pain. As soon as he touched it he figured out what the problem was and it turns out the only solution is another surgery. Apparently the way her torso grew it caused her Mic-Key button track to hit a rib on the inside of her stomach cavity. He said its very painful and compared it to being "constantly kicked in the shin". He also said that this is "bad news". He said he's seen this before and the only solution is to make a new hole and track lower in the stomach.
This is awful. This surgery is going to set her back so much....months if not years. She's come so far with her oral aversion and sensory issues, having another surgery is the last thing she needs. As he said it all I could think of was every worst case scenario out there.....riding the vent, staph infections, physiological damage, and taking HUGE steps backward in her oral progress. He is right, its definitely BAD NEWS.
I didn't want to bum anyone out by writing it on the blog before Christmas. Its all so emotionally draining. How much does Maryam have to go through? How much do Brett and I have to go through as parents? I know it can be worse, trust me, no one knows that as much as we do, but that doesn't make any of this any easier. Just try to keep her in your prayers. Thanks. And I'm REALLY sorry if I bummed anyone out. I'm having a hard time staying positive right now.

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Anonymous said...

I'm so, so sorry to hear this. Maryam is constantly in my prayers. Please keep us posted. I pray for her speedy, speedy recovery!

Anonymous said...

Glad you keep us posted..hope you can feel the love and support surrounding the whole family. May you REALLY feel the Christmas Hope right now. People at oour church often ask for updates - there are more people than you know praying. Wish my visit in CA were going to be longer so I could come over. Know how much you are all loved. Aunt Helen

Anonymous said...

We are praying for you all. Please keep us posted!

Alan Phipps said...

Sorry to hear this news! We will pray for a happy and healthy 2009.

knuts2knit said...

ummm. . Cheetos for Breakfast?? LOL! Right on! I can't say anything there. Ally had two peices of spice cake for dinner on Saturday. That was it. Just cake :) (In her defense, it was really good cake)
As always, I'll be thinking about you and M and praying for the best. now. . where'd those Cheetos go? (((HUGS))) from Ohio- Ellen & Ally