Friday, August 03, 2007

Visit to GI Clinic

Well, today was a big day for the girls. We went in for the annual liver check-ups. Last year had been a very difficult visit since Grace was quite distressed by the requisite lab work. She attempted to bite the hand of the lab tech last year. I suppose remembering that fact heightened my anxiety too.

I had spent most of the morning preparing the girls for what was about to happen. I described how Dr. B would talk about what had happened in the last year. We also went over and pretended to have Dr. B check our livers. We tap, tap, tapped on each others tummies and pressed down gently to figure out if we could feel our spleens. It was something I had to do. My kids need a perfect amount of prep time, but I have trouble determining what that amount of time is.

Before the kids woke up that morning, I had spent a few minutes trying to figure out how to approach them about the visit. "Should I tell them about the labs? How do I tell them about the labs? Gosh, I don't want Grace to go balistic again. I wonder how Meghan will do this year."

I know that these are my issues, and I must be careful not to project my fears onto my girls. Besides that lingering fear of what will happen to my girls, I find the constant questioning of my approach to Alpha-1 tiring. Most of my friends will tell me I'm a good mom because I question myself, but this affirmation doesn't make those questions stop inside my head. Maybe it is all just normal "mommy" worries, but I feel like the Alpha-1 adds yet another layer of complexity to my life.

The actual visit went quite well. Grace bravely jumped up on the exam table without coaxing. Dr. B examined her, and exclaimed, "I don't feel her spleen, and her liver is not enlarged." I breathed a sigh of relief. It was Meghan's turn next.

In a perfectly opposite reaction to what I had envisioned, Meghan promptly started to cry and refused to cooperate. She squirmed, twisted, whined, and cried through the entire exam which took place on part of my lap as well as Dr. B's lap. Again, Dr. B said that all was well. A weight seemed to be lifted off my shoulders. Or should I say my lap? ha ha

So, the girls' Alpha-1 is so far staying pretty dormant in their livers. That is great news, and I pray this trend continues. Grace is now 3 feet, 9 inches tall, and weighs 46.8 pounds. Meghan is just shy of 3 feet tall, and has made some small gains again. She is up to 26 pounds, 8 ounces. She falls between the 5-10th percentiles for height and weight on the female growth charts.

Both of them had liver labs drawn today. Grace had an extra set of tests run though. We reported that Grace has bloody noses here and there, but has always been a kid who bruises easily. So, Dr B. ordered a clotting time study, which just meant an extra couple of tubes of blood. All of this went right over Grace's head so she is none the wiser. Whew!

I'm pretty confident that each of my girls will have mild elevations in ALT/AST, and Grace's clotting time will come out normal as it did when the test was run when she was 2. Okay. I should probably say that I'm crossing my fingers for those results.

As you can see, I struggle with denial versus reality versus maintaining a normal childhood experience for my girls. Both of them identify themselves as Alphas, but I still don't think they quite "get" what Alpha-1 is yet. I wonder how much longer I can help maintain that blissful ignorance. I wonder if my girls will appreciate how difficult the one-at-a-time decisions were when they get older. Only time will tell, but I wonder. Who wouldn't?


~Denise~ said...

Glad to hear the exam went well. Keeping my fingers crossed for good labs too. You do what you can Jen, and you are a remarkable woman, mom, wife, friend. I hope the girls can stay in that blissful ignorance for some time to come yet.

On a side note, have you ever read "Raising Your Spirited Child"? I'm reading it for the second time and I see some similarities in how our girls react to things and the need to prepare them ahead of time of things to come. It may offer some new techniques, etc.

Michelle said...

Jen -

I really identify with your struggle to balance normalcy with a rare diagnosis. My little girl was born with a rare birth defect called a lymphatic malformation and also suffers from cyclic vomiting syndrome - lots of time spent in NICU's, hospitals, and GI clinics.

Anyway, you are doing an amazing job and your little girls are absolutely beautiful!

(Found you at blogcatalog ~micpro)