Appetite

We started Stanton on an appetite stimulant two weeks ago.  Everything I found on line indicated we should see results within the first two days.  We really didn’t notice a significant difference in his appetite right away. One side effect is drowsiness and we definitely noticed that the first day.  Stanton seemed tired and lethargic in the mornings and a bit more clumsy, but we thought that could also be from lack of nutrition.  I exhaust my whole day trying to get him to take a bite of something, a drink of something or contemplating a way to bribe him into eating.  I know he’s hungry and doesn’t feel great.  This comes out in strange ways.  He is an emotional basket case and his behavior has become a bit unpredictable.  His patience level has dramatically decreased and he spends a lot of time extremely frustrated when things don’t work out they way he’d like.  It’s a fine line for me in parenting.  I know he has a good reason to act in such a reactive way.  I mean, when I’m hungry I’m a big grouch myself.  However, that type of behavior is really unacceptable.  So, I’m trying to continue to mold his actions and help him understand that food fuels his body and helps him not feel bad.

Stanton too tired to play outside

We have a great book about the body from Usborne books, See Inside Your Body.  One chapter is full of information about what happens to the food inside your body.  Stanton really enjoys lifting the flaps and talking about all the processes from swallowing, to digestion.  After he licks something or takes one bite he’ll say “Now I have much energy!”  Or sometimes he’ll ask, “is that food in my intestines now?”

After about six days on the appetite stimulant, we finally noticed an increase in his hunger level!  So, this past week has been great.  He is now drinking 5 – 6 oz of chocolate milk morning, noon and night.  Stanton’s finally picked out a sippy cup  (Who knew that could be so stressful) and is taking his chocolate milk in the Playtex insulated sippy cups with the hard plastic lids.  This is a HUGE relief for me.  We are hiding his medications and a two scopes of Elecare (his medical formula) in the chocolate milk.  So at least he’s getting some vitamins and nutrition, although it’s still not as much as his usual intake of Elecare.

Stanton is now consistently eating beef hotdogs, peanut butter on a spoon, McDonald’s French fries with ketchup, Chick-fil-a nuggets with Polynesian sauce and Kraft macaroni and cheese in the microwavable cups.  This is an exciting list!  We hope to see it grow as the weeks progress!

Slow and Steady

I spoke with the team in Cincinnati and they still don’t have the results of his cilia lab work. We are also still waiting to hear about our referral to the GI team in New Orleans. Locally we have been asked to participate in a newly developing asthma clinic with Memorial Hospital. I said sure and set up our first appointment in two weeks. 

Stanton is slowly beginning to eat.  It is a slow, arduous process….but with tons of encouragement, he is sustaining his weight finally!  Stanton continues to refuse his Elecare, no matter the container.  He is, however, now drinking about 5 ounces of chocolate milk in the morning and at night.  So, I’m hiding a scoop of Elecare and his medicines in the chocolate milk.  At least he’s getting a little! 

In speech therapy our therapist is working diligently at food chaining french fries. 

This has gone surprisingly well.  We started with fast food fries, then introduced varieties of fries, adding a new one each week.   

  

The plan is to progress to steak fries, then a potato and eventually mashed potatoes, etc. 

At home we’ve taken this concept with hot dogs and Stanton is now eating a sliced hot dog and a half of a corn-dog!  This is huge for a child who used to never put anything in his mouth!  We are thrilled with his brave spirit and pray this slow, but steady progress will continue.