When Anna was born apparently she had some "markers" in her blood test showing she might have CF. I am a carrier and Steve was never tested, so we don't know if it's possible that we could pass it on to our kids. Since she had those markers, and constipation is a possible side-effect of this disease (which Anna's constipation has been getting worse) we went ahead and did this test.
The day of the test I had tried to find a sitter for the boys, but it fell through, so I had to take the three little ones. The day was overcast, but no rain was forecast for West Point. Well, apparently Valhalla (40 mins away) had a forecast for thunderstorms. And of course they hit right before we parked the car. I thankfully had one umbrella in the car and Steve's jacket, which was a lifesaver. Anna had a carseat cover which thankfully kept everything but her socks dry and I had a change of those in the bag. So the only problem- the boys couldn't figure out how to hold the umbrella to cover themselves (they each had a lunchbox they were toting as well.) And then they moved at a snail's pace walking up to the hospital door, which was quite a distance away. I was carrying two diaper bags (one full of warm clothes, blankets and IPads) and Anna. We were quite a sight. I was trying to hold the umbrella, keep the boys holding the umbrella as well so they would walk faster (big failure there) and just get out of the rain. Oh, so frustrating. We were soaked by the time we got inside. I have a picture of Tommy sitting in the office looking quite water-logged. The boys were really good about it, which helped.The test was supposed to last 1 hour from start to finish. My appointment was at 11, so I arrived at 10:30 to get admitted and taken to the office. We carted all our stuff down and around this huge hospital and arrived to find out that the appointment that was supposed to start at 10am had just arrived before us. So I had to occupy my three children in the hallway of the hospital for an hour before it was our turn. I was not very happy about this turn of events. The boys weren't too naughty and once we got into the office for the test they were so anxious to eat all the treats I brought for them they were happy as clams. I really was proud of how well they behaved themselves.
And the sweat test...
Here's how it works:
First they wash the inside of the arm with warm water over and over to remove any oils or dirt in the pores. Then they attach these little disks that are attached to an electrical source. The gel in the disks numbs the area and opens up the pores. After that the area is washed one more time and then a different set of disks are applied to the skin with little itty-bitty tubes and blue dye. Three disks were strapped to her arm, then some paraffin wax to hold it in place. On top of the wax she placed hand warmers, then wax again. Then we bundled Anna in a bunch of layers of clothes, hats and blankets and waited for the girl to start sweatin'! Thankfully she slept through the actually sweat part. After about 1/2 hour the tech came back in, removed everything, and checked the disks. Thankfully Anna had produced enough sweat to do the tests. Then we were sent on our merry way and waited for results (which we were told takes 24 hours). This was 1 1/2 weeks ago...
Just got the phone call about 2 hours ago that the test came back negative (I figured it would). Next I am to make an appointment with a GI (gastro-intestinal) guy to figure out what's up with her gut. Again- 2 weeks ago my doc said she'd put in the referral and I would get the paperwork in the mail. Never got paperwork and when I asked about it today... oops- guess she forgot.
In the meantime poor Anna is administered suppositories at least once a day. Not fun for us, definitely not fun for her. But it makes her feel better, which makes us feel better :)
Overall Anna has been doing better. Not a fabulous, happy baby- but we get a few smiles each day and her happy times are extending. I'll take every little victory I can get!
1 comment:
my word!! i had no idea she was having such a hard time. i am so so sorry. i wish i could have been there to take care of your boys while you went. stupid pcs.
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