Update

Tonight I went to a meeting at the hospital for Parent Mentors. I dreaded going, as I am emotionally drained, I'd been to the hospital already with Liz today and since Walt was working, I needed to get a sitter (my sister) for the kids. I haven't mentored in about four months, actually, as I just haven't had it in me to be very encouraging to others.
I am so glad I went though and I left feeling a little lighter. There is something to be said about being in a room of mothers, all who know what it is like to have a sick child. Two women are older and had NICU babies themselves at one time, and now serve in the NICU supporting parents there. A few have children with special needs. There are two amazing moms who each have two children living with Cystic Fibrosis. There are two mothers of diabetics. Our group is small, but mighty. The support we can offer parents who are grieving, stressing, barely coping, wondering...and many other "ings" is more than valuable. We are strong and compassionate....and I feel empowered just being around the group.

Feeling empowered is a pretty great thing, especially when I have been feeling so very weak lately.

Elizabeth had an appointment with her gastroenterologist this afternoon. I am sad and frustrated to report that she has lost more weight and is now diagnosed as being malnourished. Ugh! For months and months she has not been gaining weight, but for the last four, she has been losing. Being petite is fine (though I have never and will never know how it is to be petite : )); being petite and not being able to grow as you should is not alright. Her doctor is quite concerned....umm, hello?! Yes, concerned is a good word for it. I keep reminding the docs that Liz was at least maintaining weight and growing, even if at a slower pace, until two years ago- the same point at which all of this blood and bone marrow stuff began. Not a coincidence in my opinion.
At 10 1/2 years old, she is 55 inches and weighs only 64 pounds. She is also pale and it makes me hurt just to look at her at times.
Anyway, we are at the point, he says, that we need to start thinking about being aggressive with her weight. Before that, though, we need some lab results that were drawn today to come back. Her doctors do think that she has a high metabolic demand, which leads to a few things, one of which is that even while at rest, her body is burning calories. When your metabolic demand is high, your organs also have to work harder- your heart, brain, lungs. Dr. Brydon (my cousin), you are probably dying reading this and my poor attempt at explaining it all.
We also addressed her dehydration issue. The doctors are now concerned, based on labs and the fact that she has been dropping protein along with her dehydration, that she may have an issue with her kidneys. Chase that tail, doctors, and tell me if I need to come and look. Seriously, I just can't "go there" unless it truly is a problem. We'll get results from labs done today soon.

If you are praying, please pray for some of these things. Also, Liz developed a strange rash on her hands yesterday that the doc says looks viral. She just can't stay well for even a week. We are praying that whatever it is stays simple or goes away.

Grateful for your support,
Allyson
*** Things that made me smile today:
-A dear friend who has known great loss, delivered a healthy baby girl today! Welcome to the world, Evelyn!

-Liz told my sister that she is going to grow up to become the Mayor of Paris. "I'll be the real Mayor, but there will be another mayor to do all the work. My house will be connected to the Eiffel Tower and there will be a runway connecting the two!"
Dream big, Liz.

My blog will be going private soon. Comment or email me with your email address if you would like to be "invited" to read my posts.