I thought I would have to teach my daughter about the world; turns out I have to teach the world about her. They see a girl who doesn't speak,
I see a miracle who doesn't need words.

Friday, February 3, 2012

Nutrition Appointment

There are so many things I want to blog about but things have been so crazy and there just hasn't been time.

Yesterday Alex had her nutrition appointment at Children's Hospital.  For some reason our supply order of her formula for her feeding pump had been cut and we weren't even receiving enough to give her the 2 cans a day that she gets - so forget throwing in extra cans if she doesn't eat enough during the day, or in the case for the last month or so being sick and having zero desire to eat.  I love how insurance and costs seem to drive the supplies we get and not Alex's needs. 

Anyway - so we went for her nutrition appointment to discuss a few things and to get an increased order for her formula.  It seems like Alex has lost some weight, which doesn't really surprise me given her illnesses and hospitalizations since the beginning of December.  BUT - she was in the 25% percentile for her weight a year ago and she's now dropped down to the THIRD percentile.  I think that's a pretty drastic drop.  She's grown a lot in the last year too and she's now four and half feet tall!  Holy cow.  Her current weight is 53 pounds and kids her age and height should weigh approximately 64 pounds. 

We are having a lot of 'bathroom' issues, but that's not new - she's had constipation issues since birth.  Because of Alex's overall low tone, especially in her trunk area, it only makes sense that her bowels are low tone as well.  We have spent YEARS trying to figure out the right combo of medicine, fiber, water, etc. to keep the issues at a minimum, but it's still a constant problem.  And to be honest, it is not fun for her or me on a weekly basis to have to deal with the problem.  I'll leave it at that and spare the gory details.  So we talked a lot about that and came up with some other ideas to help her there in addition to what we already do. 

While there was some slight concern about her weight, the nutritionist is taking into account Alex's lack of mobility, meaning she's not as active as other kids her age so other than therapies, she's not burning as many calories a day as her typical peers.  We also discussed how it's really important for us as her care givers to keep her at a healthy weight, but not let her get too 'chunky' because at the end of the day, her lack of mobility means a LOT of lifting for us.  I can only hope and pray that we can get her walking with a walker sometime in the near future because the bottom line is she IS going to get heavier and heavier.  Alex started physical therapy at the age of 13 weeks - I never thought at 10 years old she still wouldn't have any mobility.  She can't crawl, she cant get herself into a sitting position, she can't pull up on anything, she depends on us for ALL of her positioning needs.  Ugh, these are the things I don't like to think about.

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