Struggling with a Rare Birth Defect

Sunday, September 18, 2005

Zarrah...

Innocence made her beautiful Strength came from within A struggle in the beginning Now her light's less dim Moving forward, inch by inch Cute as could be Stubborn, strong, a will to live An angel from within My hope, love, inspiration Zarrah....what do you think? Sign in to see full entry.

Friday, September 2, 2005

Just a Friendly Reminder....

Zarrah is still moving along and every once in a while I'm reminded that she isn't healthy just yet. We've just had a couple rough days and her doctors are thinking that her partial bowel obstruction didn't correct itself and in fact may be worsening. This is aside from her stomach complications.... Sign in to see full entry.

Tuesday, August 30, 2005

Zarrah Almost Did It!!

Zarrah is moving along slowly but surely. She's not really growing very much, but she sure is happy. She's 14lbs soaking wet and just about 10 months, I'm sure her growth spurt is just around the corner. A physiotherapist is coming by today to make sure that she's on track. I have concerns because... Sign in to see full entry.

Tuesday, August 23, 2005

Zarrah's Update

Well Zarrah is moving along, slowly but surely. I can't believe she's going to be 10 months old soon, time just seems to zip by! I think her surgeons are starting to accept the fact that she is not going to get on the growth curve anytime soon, she's just small, at 14lbs and 24 inches. Just watch,... Sign in to see full entry.

Friday, August 19, 2005

SHOULD ZARRAH GET RID OF THE NURSE?

Things are pretty much the same with Zarrah, although definitely on the mend. She stands at 24 inches, and almost 14lbs, at 9.5 months. The feeding tube is still with us, but hopefullly that will go within the next 4-5 months. Her next surgery will be scheduled for about 3 months from now, and... Sign in to see full entry.

Saturday, August 13, 2005

Zarrah's Update...

Zarrah is almost 9 1/2 months now and is 13.75lbs and 24 inches long, she's definitely moving along. Her surgeon suggests we do her 'stomach muscle closure' surgery around a year of age, giving her a few more months to grow. She's as cute as ever, I've just posted a recent picture of her on my... Sign in to see full entry.

Sunday, August 7, 2005

THANKS....From Zarrah and Myself....

Thanks for those that took the time to read through a shortened version of Zarrah's journey. I'm written a book on our journey, about 50 000 words, hoping to eventually get it published to help others understand what to expect, when faced with the same sorts of challenges. I know that sometimes I... Sign in to see full entry.

Saturday, August 6, 2005

ZARRAH'S FINALLY HOME

My partner picked Zarrah and I up at the hospital on Thursday, February 3rd, 2005, after 85 days. We still have feeding issues to deal with, and Zarrah will need at least one more surgery, but to finally be home makes our future challenges doable. It was weird walking in the door, everything was... Sign in to see full entry.

Friday, August 5, 2005

Zarrah's Going Home....And None To Soon!!!

FINALLY...Dr. Kim agreed that it's time for Zarrah and I to take a break from the hospital scene. It's DAY 84, and we are going home....YEAH! I have been reminded that we are on probation and will be coming back for appointments every week for the next while, I'll take that. If Zarrah's weight keeps... Sign in to see full entry.

Thursday, August 4, 2005

Zarrah's Got Her Feeding Tube!

I sat in the post-op waiting room for about an hour before the nurse told me I could see Zarrah. This was after alot of 'nudging' from me. Every ten minutes I was at the desk asking if I could see Zarrah yet, I must have been driving them crazy. I kept pleading my case, and eventually they let me... Sign in to see full entry.

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