Search This Blog

Background Design

Sunday, June 29, 2014

Contending for Abby

Over the past few weeks our church has been speaking about contending for the miraculous.  We don't often put ourselves in the category of needing a miracle, as we often think miracles are only asked for when something is extremely wrong.  You know, like someone is deathly ill, or got in a bad accident...Am I making sense?  Maybe it's our human pride, or maybe we just never looked at Abby's eating this way, but in the past few days God has definitely been tugging on my heart and on Matt's heart to contend for a miracle for Abby.

We are so grateful that just a year ago the doctors were getting ready to put her on a feeding tube, and by God's hand, he provided therapy for Abby to be able to avoid it.  Abby is on the charts, Abby is gaining weight, Abby is a happy girl, Abby loves to laugh and play, and Abby is growing developmentally - for this we are grateful!  Our struggle has continued to be on getting her to eat foods other than pureed fruits and yogurt, to be able to chew, to be able to self-feed, and to be able to drink anything other than water on her own.  In the big picture of things, this may all sound like just some normal toddler struggles, and I get that it could be WAY worse, but it doesn't take away our reality of stressful, overwhelming days of therapy - therapy is every single day - because when the therapists leave, we have to take over and keep up with daily exercises and treatments.

In addition to therapy through the Clinic, Abby is now also being evaluated by an Occupational Therapist for sensory issues and what they think may be weak muscles in her mouth - which means we may be adding more days of outside therapy to our weekly schedule.  All of these recent findings, along with some other stuff, have really added to our stress levels and the longing, and hope of Abby to just be completely healed of her feeding disorder and issues.

Our eyes have been so focused on the problem that we have failed to set our eyes completely on God and trust Him to be the solution.  Sure we pray daily for Abby to progress and to enjoy eating, but I feel like it has just become a routine prayer not an all out cry out to God for her healing - and this is what we are doing now, and what we ask our brothers and sisters in Christ to join us in prayer for.  Contending for a supernatural healing for Abby.  With God all things are possible, and I know that sometimes struggle is a part of the journey, but we cannot be afraid or timid in making our requests known to God.

"Truly I tell you, if you have faith as small as a mustard seed, you can say to this mountain, "Move from here to there," and it will move.  Nothing is impossible for you."  - Matthew 17:20

"Do not be anxious about anything, but in every situation, by PRAYER and PETITION, WITH THANKSGIVING, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus." - Philippians 4:6-7



Tuesday, May 20, 2014

Chewing? What's that?

Once again, months have passed and I have not had a blog update.  Honestly, the reason I have found it so difficult to post is because initially I had started this blog in hopes of helping other parents who found themselves in our situation, but as we have gone through treatment, I just can't even put into words what we are doing that is helping her - and on top of that, every child is different - what works for us may not work for your child, and may actually make things worse.  So I have been very very hesitant to post tips and techniques, because there is so much minute details that go into feeding therapy that I could never "rewrite" it onto paper.  So, from here on out, I will just post updates on how Abby is doing, and maybe some other fun stuff :).  If you are a parent looking for help, please please find a feeding therapist/clinic ASAP! The roadblocks we are experiencing now may have been prevented if we sought treatment when she was just 4/6 months old instead of 12 months old!

So, where are we at today?  Well, Abby had been doing pretty good - however in the last month or so we began to notice that feeds were/are taking double the time, she was/is spitting out a lot of the finger foods, she was/is gagging/coughing a lot more and just being a bit more (a lot more) defiant.  Well…I finally put my finger on it after watching every bit of food go into her mouth, stay in there for a long time, then either get spit back out (in the same shape it went in), or was swallowed whole - this girl does not chew.  The closest she gets to chewing is a gnawing like motion of "chewing" yet her teeth never fully bite down together to masticate/grind the food to where it is ready to be swallowed.

I quickly brought this to the attention of our therapist, sent her some videos, and she got the Clinic's speech pathologist involved - and yes indeed we have a pretty significant problem on our hands.  It looks like Abby has some sensory issues with chewing, maybe even anxiety - when she gets a textured food, she waits for it to either dissolve in her mouth, swallows it whole, or it gets stuck on her tongue and she freaks out and starts gagging, coughing and trying to spit it out (imagine taking a bite of a gold fish, pieces may crumble in your mouth, others stay large - you know that by not chewing it up it's going to hurt swallowing that whole, so your protective instincts pop in and say get that out of my mouth - this is what's happening).

When Abby eats her puree's/yogurts she is perfectly happy and content - she does not have to think, she does not have to do anything, just opens her mouth, and swallows. Up until the past month we have manipulated her food to present to her in a way that would be "easy" for her to command in her mouth - we'd mush it, make it into tiny pieces, or we'd give her foods that were already like this (refried beans, large soft steak potato fries etc) - but now we've got to address this before moving forward.  I mean, think about it, chewing is one of the foundations of eating.

We are still working on coming up with a protocol that can address this issue - the therapist is here today, and back next week - in the meantime she will teach me some things and I will have to do these exercises with abby 2-3 times a day. And I know it's not going to be pretty.  The exercises mainly consist of putting a crunchy food (cheeto, veggie sticks, gold fish, crackers) on abby's back molars and requiring her to bite down, 3-4 times, making the "crunching" sound, (we will do the same thing so she see's us chewing/crunching), then say chew chew or chomp chomp and show her what it should look like (yay i get to show someone my chewed up food and it not be offensive! haha jk!) - we even have a mirror for her to look at her mouth to see what she is doing and how it looks in her mouth.  She needs to learn what her teeth can do!  This may sound like an easy exercise, but it's not when she does not like having to bite down and chew in the first place - so I will be taking a lot of deep breaths this week and praying that she catches on fast!

Here is a quick video of what her chewing exercises will look like.

Some may wonder why we didn't catch this sooner - and it's a good question.  Abby is currently eating at the level of a 8/9 month old baby (she will be 2 in 4 weeks!) - so we expected some delays.  Her back molars did not come in until a few months ago, so up until then when she was "gnawing" and "munching" we thought it was normal because there were no teeth back there for her to "chew" with.  But now all the dots have lined up and it's pretty clear that there is an issue now.

Your continued prayers for Abby are so appreciated - and for mommy too, well because feeding a child who doesn't want to eat 6 times a day, 7 days a week can be… exhausting, overwhelming, stressful, etc etc - but we are SO encouraged by the progress she has made _ i mean she's been on the charts for almost 3 months now! :D And we are SO blessed to be a part of Clinic 4 Kidz - how I wish services like these were offered all over the world - because it is therapy like this that makes a difference!


Until next time….




Wednesday, February 12, 2014

She's on the Charts!

It's been too long since I've updated you all on Abby...so here I go!  We are happy to say as of her 18 month check up in December, Abby is now on the charts, the very edge of the charts but nonetheless she's on the chart people!! WHOO HOO! :)


Abby is currently almost 20 months and measures in at 30 inches tall and 20lbs 13ozs! It has been a little over 6 months with Clinic 4 Kidz and we are so blessed to be a part of their program!

We still have some struggle with food acceptance and occasional behavioral refusals but in the big scheme of things we are on a great path.  Though Abby's preferred food lists are small we work very hard and precisely in getting in new foods as successfully as we can.  

What does she eat you might wonder?  Well for finger foods she accepts mexican rice, refried beans, cheese, quesadilla (sometimes), eggs, pancakes, mac n cheese (mashed), fries, cheetos, gold fish, and of course fruit! Allyne was here today for therapy and we got her to accept a revised version of fried rice! :)  In her purees we can put variations of any of the following - strawberries, blueberries, raspberries, peaches, pears, bananas, applesauce, mangos, spinach, avocado, carrots & sweet potatoes.  The veggies we have to sneak in with the fruits - and as you can see she doesn't accept too many veggies at this point. In all her puree's we add in 3/4 tsps of saffola oil, 1 tsp of heavy cream and 2 tsps of a grain.

Eating mashed spaghetti noodles with butter with Allyne

We do 3 food feeds a day - each begin with a finger food requirement of 1 oz (most of this we feed to her as her self feeding is still not consistent (meaning if we leave it to her to eat, she 9 times out of 10 won't)), then she has the 2 ozs of puree with the additives in it - and we have 4 milk sessions a day - 3 sessions of 2ozs of milk (milk with carnation instant breakfast), and 1 session of 1 oz of milk - as nursing is coming to an end we will up her milk intake accordingly.  Hydration wise, on top of the milk and water content/milk in her purees, she is drinking an additional 4-6 ounces a day of water/juice - this may not seem like much (which it really isn't), but it's a HUGE increase for her as she was doing only about 1 ounce a day just a few months ago!  

We are happy to report that she has had NO throwing up episodes since October and she is OFF of the erythromycin for the delayed stomach emptying, and is off of the iron supplement as well!  Right now she is only on prevacid for the reflux - she takes 2 15mg pills a day.  We have had to increase this as she started to have a week of extreme food/milk refusal and Allyne suggested we check in with her GI as this is typical behavior when a childs reflux is acting up - and she was right, 3 days later Abby's refusals went away after increasing her meds!

What are things we are still working on?  

- Increase different/new food acceptance
- Drinking her milk in a more age appropriate way - we currently spoon feed her milk along with a few sucks out of a straw though getting her to drink out of the straw takes a lifetime..ok maybe not that long but that's what it feels like!
- Self feeding
- Getting her to eat her calories through finger foods so we can phase out puree's eventually

Trying a new drinking contraption today for her milk with Allyne

And there you have it!  I will try my best to not wait 5 months for another update - man I am bad at this updating thing!

Thanks for reading!!