Prayers

Just gonna open up and share what's been on my heart...It's so hard to keep it all in, sometimes it's best but other times it helps to just let people know how you really feel...Ever since Vacation Bible School, I have been dying inside...Seeing the 2 and 3 year old class this year really HIT ME HARD...Jaden was suppose to be in this class this year but instead he hung out in the Nursery with all the little Nursery Kids and his Mammaw of course...I HATE everything about Jaden's BRAIN BLEED...it has effected him and James and I in ways I can't even explain...Seeing all those little 3 year olds running around at VBS just makes us realize even more that that's what Jaden should be doing now but no his brain was all messed up from blood that should have never been there...Seeing their little personalities and hearing all their little voices talk to their teachers and now here comes the biggest part about whats been HURTING me the most...Seeing them EAT...I stood back from a distance and just WATCHED them...Each night the Kitchen had something different for them to eat...One night in particular they had McDonald's Chicken Nuggets for them...A sweet dear lady from church that was working in the Kitchen came up to me and handed me a couple of extra nuggets to give to Jaden...In no way, form or shape did she mean anything by this, to her she was just giving him extra, she had no idea that Jaden is fed through a G-Tube and that he has never had a Chicken Nugget in his life...It was just a nice gesture for her to hand out extra to all the kids and she had saved some extra for Jaden...At that moment my heart was CRYING out not at her but at the WHOLE SITUATION of where we are at this point in time...3years old still on Infant Formula, feeds every 4 hours just like a newborn, can't eat anything with Textures, Priming Feed Bags, and Setting Pumps for continuous feeds through the night and I could go on and on and on...It's not Jaden's fault, he can't help it...Something is keeping him from wanting to eat, we just have to figure out what it is...Eating has been our BIGGEST STRUGGLE so far...I can handle all the surgeries he's had, all of them but it's so hard for me to sit and watch a kid eat...Just the little things that some parents may never even think about...We are longing for the day Jaden can eat, eat all by himself...Longing for the day he can have his G-Tube removed...We know that everything Jaden has been through is for a plan and purpose, but it's still so hard to face these struggles daily...And seeing all those little kids eat and eat and eat with no problems just makes us want that OH SO MUCH for Jaden. so with all that being said...

Tomorrow, Tuesday August 9, 2011 we will travel to Cincinnati Children's Hospital with Jaden to be seen by their Interdisciplinary Feeding Team...Our prayer is that they can help us to overcome some of the Eating Disorders Jaden has. Our biggest task is getting him off of Infant Formula and switching him to a Healthy Pureed Diet. He's 3 now and has to come off of this Formula and slowly switched to something a normal 3 year old eats. It will be a slow process but we know this is something that has to be done. In doing this, there  is so much to be in prayer about. It's just not, Oh let's just switch him, it will be something that has to be Professionally handled and his weight closely watched along with making sure nothing triggers possible seizures for changing his complete diet and method of nutrition.

The Feeding Team at Cincinnati Children's Hospital specializes in kids with Poor Weight Gain, Limited Ability To Take Fluids, Problems Coordinating Sucking and Swallowing, Coughing, Choking, and or Gagging While Feeding, Problems Adjusting to Foods With Different Textures, Complex Medical Conditions, Picky Eaters, and Preparing To Move From G-Tube Feeding to Oral Feeding. When we arrive Jaden will be evaluated by a Physician, Nurse, Dietitian, Occupational Therapist, Speech Pathologist, and the Whole Feeding Team.

Help us pray that it's something simple as to why Jaden will not eat textured foods, something easy as to why he only wants liquids, and they can figure out why he always wants or feels the need to gag himself during his g-tube feedings.