Woo hoo! We finally have our itinerary for Tabitha at Cincinnati Children's Hospital! I guess people don't usually get excited about going to a hospital, but I'm thrilled! Last spring we did the paperwork and thought we were going in August, then the insurance company wouldn't cover it, then the insurance company changed their mind. In SEPTEMBER I posted that great news. I thought we'd go relatively quickly. But I guess in the meantime they'd gotten really busy and couldn't schedule us until January. But then one of the departments she needs was booked so they moved us to February. I kept waiting for the official itinerary, thinking it would be a quick process. But it wasn't until today, 3 months after getting the good news from our insurance company, that we received a packet in the mail with our official dates. I'm SO happy!!
Here's our "vacation" itinerary: (If you want to know what all these tests are feel free to look them up....I won't bore you all by explaining them here.)
Tues, Feb 8--travel to Cincinnati
Wed, Feb 9--sacrum x-ray; contrast enema
Fri, Feb 11--bowel management lecture; abdominal x-ray; clinic visit
Mon, Feb 14--abdominal x-ray; lab test; kidney ultrasound
Tues, Feb 15--abdominal x-ray; urodynamics; cystogram; parent peer discussion
Wed, Feb 16--abdominal x-ray; urology clinic visit
Thurs, Feb 17--abdominal x-ray; cystoscopy and vaginoscopy exam under anesthesia
Fri, Feb 18--abdominal x-ray; clinic visit
Fri or Sat--travel home
Sounds like fun, huh? =) We're planning on taking all the kids and doing some fun stuff while we're there too. Over the weekend and in the afternoons and evenings we should have some free time for the Creation Museum, Children's Museum, and visiting a couple friends. Hopefully it will end up really being somewhat of a vacation, even if not a typical one.
The purpose of this trip is to do a thorough exam (colorectal, urological, gynecological) to see the big picture of Tabitha's birth defects, determining what's been fixed and what still needs to be done. Tests should show whether or not Tabitha has the potential for bowel control (based on what we've read she probably does not). If she does, they'll work with us on a diet/laxative program to regulate her. If she doesn't, the week of bowel management will be spent learning to do enemas and find the right "prescription" for her. The daily x-rays will show if she is totally cleaning out each day, which is the goal. They'll adjust the enema dosage accordingly. The big goal (besides her health of course) is that she will be able to be out of diapers.
Those who are praying for us.....
Please join us in praising God that we finally have these dates and (again) that the insurance company will cover it. Other families have had to fight much harder or even pay for it all themselves.
Thank God also for the yahoo chat group for parents of kids with imperforate anus. I've learned so much from them!
Pray that we'll be able to get into the Ronald McDonald house right near the hospital. Or that a generous donor will pay for 10 nights at a hotel!
Pray that all these tests will be successful, and we'll come home with Tabitha being out of diapers, and with good prognosis for all the colorectal, urological, and reproductive issues.
Pray that Tabitha will handle this well and be at peace with all the doctors and procedures. Also, pray that she'll just be pleasant, despite travelling and loss of normal routine.
Pray that Ethan and Jesse will be able to enjoy the time there, even though a lot of it may be pretty boring for them.
Pray that Heath and I will be able to handle whatever medical things we need to, especially learning to do enemas. Honestly, I'm really repulsed at the thought of it. But I'm also repulsed at having to change a 3-year-old's highly potent diapers several times a day! So this should be better than that, once we get used to it. It does take almost an hour of "potty time" though, so pray for wisdom on how to incorporate that into our lives. I've already freaked out about it all, but I'm working on trusting God more and believing that He will help us through this.
Thank you all for your support. We're so glad we'll soon be getting some serious help with all this!
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