Tuesday, September 10, 2013

One step backwards

Kind of a sad day in the Berndt house today.  I made the decision to put Allie back on her tube feedings.  She started Kindergarten last Monday and since then, she has dropped over a pound.  I knew that once she started school, it was going to be difficult for her to continue eating orally but it's proving to be more of a challenge than I originally thought.  Allie needs a certain type of environment and me or someone else with her constantly telling her she needs to eat.  If she doesn't have that, she simply won't consume enough calories. 

Allie tried really hard last week to eat on her own during lunch time but it's just not working out.  I know starting Kindergarten is a huge change in her life and she needs time to adjust to it.  With time, she may eat a little more but for right now, she's just not eating enough to maintain her weight.  She has lost over a pound in 1 week and that is one pound we cannot afford for her to lose.  It takes Allie so much time to gain weight that loosing even the slightest bit of weight is a huge deal.

I'm disappointed, not in Allie but in the whole situation of having to go back to tube feedings.  Allie has worked very hard this summer on her oral eating and she gained a whopping 2 pounds since May.  That is the biggest weight gain that Allie has ever had in such a short period of time.  She did that all on her own with real food through her mouth.  But, going back to tube feedings is just a bump in the road, it's not an end.  We have taken this detour before and we will take it again in hopes that one day we will turn this corner and not have to look back. 

I talked to Allie tonight about using her tube again and she said, "Mom, I don't want to eat at school anymore, I'm just tired.".  I know it's hard for Allie to eat especially when I'm making her eat or someone else is making her eat.  When I say making her eat, I don't mean force feeding her.  We are not holding her down and forcing her to eat.  She is willingly opening her mouth but we are encouraging her to eat and bribing her at times.  There is no force feeding in this family - I am strongly again that!!!!!  Allie is tired and rightfully so, she has worked very hard for the past 4 months on her oral eating and if she's ready to take a break and go back to tube feedings, then we will grant her that. 

So, back to the drawing board with the school so we can figure out a routine on when her tube feedings will be administered. We are hoping to only need one feeding at lunch time but depending on how her weight does, we may need to do more. I will be going to school each day to do her feeding until a plan is in place.  I think the hardest part for me is that I know once Allie gets tube feedings, her oral intake decreases dramatically because she's always full from her feedings.  We give her the chance to eat, but she's still full from the previous feeding.  It's just hard to watch your child not eat when you know they can, if they will.  This morning she chose not to eat and just have a tube feeding - broke my heart but I did as she wished. 

On a very positive side, Allie is doing wonderful in Kindergarten and is adjusting just great.  She loves her teacher and comes home everyday with a smile on her face.  I am so proud of her.   Allie has also started gymnastics and is loving her.  She is making me proud everyday and I'm so thankful she's mine!

Allie having fun at the lake

Chloe and Allie enjoying the pontoon boat