Sunday, November 1, 2015

Eva's Feeding Therapy Update Part I

The day Evangeline ate a banana.

If you are a regular reader of this blog, a Facebook friend, or a real life friend you have probably been following the story of Eva's recent health concerns.  Our world was completely turned upside down when in July we found out that my daughter has a chiari one brain malformation.  We met with a neurosurgeon last month and were relieved to find that they were not anxious to perform decompression surgery this fall.  We are scheduled for a follow up mri and neurosurgery appointment in March but for now the majority of Eva's medical care involves feeding therapy 2-4 times per week.

If you happen to be wondering, "What in the world is feeding therapy?" you are not alone.  I didn't even know that such a thing existed four months ago.  Feeding therapy involves working directly with food through a progression of steps to help a child hopefully one day eat food on their own.  I found it interesting to learn that both occupational therapists and speech pathologists are involved in feeding therapy.  I don't think all children involved in feeding therapy see both speech and occupational therapy but in Eva's case she does.  Each specialty focuses on a different area and we have been thrilled with Eva's progress in both areas.  In my non-professional opinion her speech therapists work more closely on how Evangeline is actually chewing the food, what her tongue is doing at the time, and how her chewing muscles are developing while the occupational therapists focus more on the sensory aspect of eating.  They both actually sit down with Eva and  have her eat during each therapy session.

Eva is delayed in her eating skills and does not eat what is typical of a 24 month old.  Right now our main priority is that Evangeline would eat real food and continue to grow.  For months we have begged the Lord to give Eva an appetite and a desire for food.  Prior to August she never appeared hungry and wouldn't ask for food or show signs of hunger.  I still remember the day about two months ago when she looked up at me and said "I eat."  Never before have I broke down in tears when my child asked for food.  You see aside from nursing, she had never asked me for food.

Eva drinking juice from a nosey cup for the first time.
Today Eva continues to have difficulty with food but she has made so much progress.  It really does feel like a miracle that she has made as much progress in therapy.  Let me just take a moment to say thank you to each of you who have prayed for Evangeline.  Thank you so much from the bottom of my heart.  It means so much.  Thank you also for the many friends and family who have personally called, sent cards, mailed care packages, or squeezed money into my hand with a wink in your eye saying, "Please take it, it's for Eva."  Words can't express just how much our family has been blessed by your encouragement.  You have truly helped to bear our burden the past few months.

To date Evangeline will tolerate most food being placed on her tray and will even lick most of the foods with encouragement.  Last week she actually took four bites of a banana!  The next progression in feeding therapy is to have Eva take bites of food and then eventually one day to swallow them.  She continues to receive the vast majority of her calories from Pediasure and I look forward to the day when we can reduce how much Pediasure she is drinking.  Her oral skills are developing and we continue to work on building up the muscles in her mouth so that she will not grow too tired from chewing that she stops eating.  

Part of Eva's difficulties with food also involve sensory issues.  She works closely with two occupational therapists during her actual meal times.  They enjoy sensory play together and then sit down to work on actually touching, licking, and attempting to eat food.  We also work weekly on oral, stimulating exercises with a Nuk brush or vibrating toothbrush.  At first many of the sensory exercises seemed incredibly silly but I have seen so much improvement in Eva's tolerance of sensory stimuli.  Eva will even tolerate one of the vibrating toothbrushes without crying!

I've thought a lot about whether Eva really has feeding difficulties and sensory issues or whether she is just plain difficult or lazy when it comes to food.  In my professional mom opinion she really does have feeding issues.  She's not just trying to get attention or be difficult the vast majority of the time.  (I have been concerned about her lack of eating for over a year.)  Yes I would say that about 10% of her food resistance is attitude but the majority of it is a true problem.  We are incredibly thankful for the grace that God has shown us in giving us wonderful therapists to walk alongside us during this journey.

You might also enjoy reading the following posts where I have shared more about Eva's health concerns:
My Daughter Has Chiari
What The Neurosurgeons Had To Say 

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