Thursday, June 30, 2011

The Good, the Bad, and the New Plan

Phew. Time to take a breath since going on vacation! I think it is often the case for any American family, with or without a chronic illness; you really need a vacation to recover from vacation! I feel like we are just coming out of this stage now. We have now been home for 4 days – the bags are unpacked (mostly) and the kids are getting back into the swing of things.


Just a few days before we headed to Maine for 10 days of vacation LittleM headed back to the GI doc for her 3 month follow-up. It was back at the beginning of this year that Dr. D. put both of the twins on “feeding tube watch.” At that time he gave us 4 weeks to make significant weight gain for LitttleM and 6 for LittleR. By the grace of God they both began to make gains far beyond anything the medical world could explain. Well this visit was no different. LittleM is back on the growth charts for the first time in probably TWO (of her almost 2.5) years! PRAISE GOD! I am happy to report that Dr. D. cleared her for six months!!!


The bad news is that these kids are growing up. Well that is really not all that bad news is it? No, really it is good, but it presents a whole new bunch of challenges. Just today LittleM was going through her “annual testing” with her OT (early intervention tests yearly to make sure nothing is being missed). She finished her cognitive tests today and scored at 32 months (she is almost 28 months). I can see that this is probably part of the reason we are presented with some of these new challenges. The other is probably the effect from being exposed to her peers eating food while we were on vacation. The result? This little girl is not all that happy that she cannot eat other foods. For the first time in a year she is sneaking food into her mouth (crumbs, groceries while in the store). Just 14 short days ago she would bring it to me. LittleR is affected in a different way since vacation, but still new. He is not really trying to eat things that he should not, but yesterday he melted down when his cousin had a popsicle and he could not have one (his special pops were not ready).

I emailed a couple of PhDs today to chat about the psychological effects of all of this on self-worth. I had done just a little research on this topic after reading an excerpt from a book about living with allergies. At the time we decided that based on what I had read we would not expose the kids to food. It seems to me that at this point – unless we plan to raise them in a bubble – we have to begin the evolution of our plan. We have to prepare and make incremental changes that will allow them to grown. After doing a little more research on personality development I really believe that my “instincts” were really God-given wisdom (which I have prayed for tirelessly in this situation). Not to say that removing exposure to food is the only answer for an FPIES child – some families don’t have this option – and I am sure that God gives wisdom on how to instill self-worth and self-esteem even though they have to be denied food. I have always believed that we are fortunate to have the option to shield LittleM and LittleR in the ways that we have.


Still, we can’t do it forever. We can’t create a world for them that is so far removed from the real world that they don’t know how to function IN the real world. I believe that we need to begin planning for the next step in this journey. What does that next step look like? I have no idea. Time to pray and seek wise council. We can return to normal (VERY little exposure to food) to a certain degree at this point, but they are growing older, and we WILL face this problem again…how can we best prepare them to operate in the world around them and still nurture their spirit and personality.

That is actually the task for every parent isn't it?
Thank God that He gives wisdom to those who earnestly seek it.

Proverbs 2
2 Make your ear attentive to wisdom,
Incline your heart to understanding;
3 For if you cry for discernment,
[a]Lift your voice for understanding;
4 If you seek her as silver
And search for her as for hidden treasures;
5 Then you will discern the fear of the LORD
And discover the knowledge of God.
6 For the LORD gives wisdom;
From His mouth come knowledge and understanding.

Proverbs 3
21 My son, let them not [g]vanish from your sight;
Keep sound wisdom and discretion,
22 So they will be life to your soul
And adornment to your neck.
23 Then you will walk in your way securely
And your foot will not stumble.
24 When you lie down, you will not be afraid;
When you lie down, your sleep will be sweet.
25 Do not be afraid of sudden fear
Nor of the [h]onslaught of the wicked when it comes;
26 For the LORD will be [i]your confidence
And will keep your foot from being caught.

1 comment:

  1. ugh. The challenges never stop. You are doing a great job. step by step, challenge by challenge.....keep moving forward....keep seeking answers...all while on your knees. And God promises to provide and answer. Praying for you.