Saturday, October 13, 2012

A blessed baby

On September 30th we had Anna's baby blessing.  Steve's sister was awesome and drove 8 hours with three of her kids to be here and support us for this great occasion.  And she was great and held unhappy Anna, which was also awesome.  I did everything in my power to get Anna to be happy during her blessing, but alas- she cried anyway.  Thankfully Steve has a powerful voice and we could hear him just fine over her wimpers.  Or maybe I'm just getting better at tuning out her cry?  The one thing that really stood out to me was that he blessed her with a healthy body and a strong mind.  Considering all that she has gone through that was a great thing to hear!  Maybe it was the blessing, maybe it was the fasting in her behalf, I don't know- but starting that evening Anna improved significantly.  For three straight days she was a happy baby.  I didn't even recognize her!  It was a huge blessing for us.  I believe that her constipation troubles are keeping her from being always happy, and I hope to get that taken care of soon.  But it was a wonderful day with wonderful friends and family to share it with us.

I love the boys' faces in this picture!

Because of all the craziness of feeding people right after church, we didn't get many pictures taken.  I took the ones of just Anna on Monday morning and she was extremely cooperative and absolutely beautiful in her blessing dress.



A funny little note... her neck was too big to button the top button :-)

Friday, October 12, 2012

Sweat Test

Have you ever heard of a sweat test before?  I hadn't.  Apparently it is the only test that can rule our Cystic Fibrosis.  Who knew?  Anyway...

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.    Now I have to wait until at least Tuesday for the referral to be approved and to be assigned a doctor.  Gotta love Government Health Care!  And that doctor will be at the same hospital as the sweat test.  

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!

Sometimes you feel really proud...

Ellie has an incredible teacher this year.  Sure, there is far more homework than I would like (which means homework for me, too- gotta check answers and spelling, etc) but Ellie is learning and growing and her teacher adores her.  How could she not?  Anyway... here is a note she left on Ellie's homework sheet last week...
"I love how you attend to every detail, Ellie- even illustrating your cover.  It is this attribute that made me recommend you for student council.  I know you will do a great job organizing fun events for our school! I love your pictures."

Pretty much every week Ellie gets these kinds of glowing reports from her teacher.  Ellie is apparently very helpful in class, attentive, and willing to do anything and everything the teacher asks of her.  She's becoming that way at home, too (mostly).  I am so proud of my little, though not-so-little, girl.