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
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ReplyDeleteHi Nicole,
ReplyDeleteMy name is Tiffany and I just recently came across your blog. I have a son who has had a feeding disorder for several months now. He has an NG tube in. I was wondering how your daughter is doing these days? I hope better! I am a Christian like you. Best, Tiffany
Hi Tiffany! So sorry for the delayed response, I haven't checked my blog in months! Which means its time for me to post an update!! But Abby (who will be 3 next month) is doing pretty good! We stopped therapy in March of this year and since then we have come to find out that she has an allergy to all things dairy - no test shows a positive allergy for it, but when we removed it from her diet she stopped gagging on food, stopped a lot of the refusal (though she still does refuse, but its not as horrific as it was!), her vomiting stopped, tummy aches went away, rashes went away... she's like a new little girl! No doctor told us to go off dairy, we just did it because of all the research we've done, and low and behold it had a big impact on her! We also found out that she has FPIES (food protein induced enterocolitis syndrome) to both peas and lentils - so we stay far away from them, and most legumes just in case she reacts to any of those as well (she basically throws up so much her body goes into shock). She still battles to keep weight on - she's still in the 24 lb range at 3 years old (still off the charts!) - we just actually had another endoscopy done today, the GI and allergist are curious to see if she may possibly have more food allergies through EoE (you can google that for that it is as I'm still unsure how to explain it). I hope your LO is doing better!! Feeding disorders are no fun that's for sure!
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