Thursday, January 24, 2013

Mommy! I'm sooo hungry...

Alexa has regularly scheduled appointments with her metabolic team every 4 months.    We are usually at the hospital laboratory at 8am for a slew of blood work.  We then meet with her wonderful dietitian  her nurse, resident doctor and staff doctor( in addition to any students that might be there on that particular day).  She is weighed, measured and all the milestone questions are asked and they do a quick assessment of her.  They are always full and busy mornings.  Her ammonia results are given right away, and based on her amino acids results(which take a day or two) and her height or weight gain, her medication and diet may be adjusted.
At our last appointment on December 13, her height and weight gain was minimal, almost nothing at all.  There is a daily average that each child should be growing and based on when she was seen prior to that(August) her growth did not even come close. In addition she fell off her growth curve for both.
Now she was sick for most of October and November with some kind of illness or another, so the minimal growth, although concerning might have been very well explained by that.  We were to keep close contact with our dietitian and have another height/weight done in about 2 months time.  If something needs to be adjusted we wanted to make sure we caught it before our next appt which just got postponed from April to May.  Her amino acids came back slightly low even though her prescribed protein per kilo should be enough, so the dietitian suggested more calories added to a few of her daytime feeds.

That brings me to the title of this post.  MOMMY! I am soooooo hungry!

Words that I have not heard very often in the 4 1/2 years of Alexa's life....until these last 2 weeks.  I am not sure what happened to my picky eater, but this girl is HUNGRY!  Her appetite has increased A much so, that even her teachers have noticed...
Yesterday and today, she ate BOTH morning and afternoon snack in the morning, and then ate all her lunch and ate a muffin for afternoon snack! Plus all her formula!  Noting that she ate both snacks in the morning yesterday, this morning I gave her extra food with her breakfast hoping that would keep her until snack...well she still ate both snacks at morning break and at lunch was starving again!  She gobbled up a sandwich in less than 5 minutes.
This would be wonderful and it is, except that we may be getting to a point where I am going to have to start restricting her food intake(or type of food offered) for fear of going over her 8g protein daily protein allowance.  Something I have never had to do.  EVER!

Her dietitian and I spoke yesterday and we suspect that she may be going through a growth spurt! Which is wonderful considering her lack of growth from August to December, but in UCD patients growth spurts need to be monitored very carefully.  She was already low on her amino acids and if she is needing more calories to support the growth spurt and we don't give her enough, her body can start to decompensate and fast!.  This of course can result in elevation of her ammonia....So as much as I LOVE to see my girl eat and ask for food(we have worked soooo long to get to this point); it scares me and makes me anxious.  I have to watch her carefully! And we will have to get lab work done in 2 weeks time, if not sooner.  We were supposed to go to our last HPN study visit in Cleveland on Friday(and we would have had all the weight/lab answers) but Alexa was a little under the weather, so we had to cancel and are hoping to reschedule for next Friday.  If this is not possible, we are going to have to make an additional trip down to Sick Kids for labs, height and weight follow-up.  We are going to have to keep on top of this.  Until then I will be giving extra fruits and low protein items and hoping that I do not have to say "No" to too many food requests.

That's all for now...looks like it is snack time as my girl is hungry! Seriously!


  1. yes, I noticed that too last weekend she asked for senconds....that never happened before....

    1. She is desperate for food! She ate all her lunch in less than 10 minutes and then stole half of mine! And was really upset when I told her she couldn't eat any more egg yolk. lol

  2. It is such a tightrope walk, isn't it? Sounds like a growth spurt, for sure. Corrigan didn't gain the expected amount OR grow the expected amount either, but then again kids don't grow according to charts and textbooks. It is so exciting when they eat, but then we have to measure more, scan ingredients more and compete with that appetite against what they are allowed, it is a whole new set of challenges! I love your new blog, btw and added it to my UCD blog list if that is okay!

    Love ya!

    1. Absolutely! I would be honored to be on your UCD blog list...And thank you for the compliment...I am new at this thing and wasn't sure if I would upload anything, but have a lot of positive feedback and great support for it, so I know I am doing the right thing in telling her story. Last time I checked 41 people and 51 people read the organ donation and UCD pages respectively. If even 1 person learned something or 1 person signed up to be a donor, I think it was well worth it!