Hey Blog World! After a WONDERFUL vacation/get-my-sanity-back trip to NC for 3 weeks, I'm back. I started making a list of everything I need to put on here and it is loooooong. ;( But, one at a time we shall do this. First thing, a prayer post for little man(and yes, even with a baby boy on the way, Caden is still the little man by all numbers and percentages..ha!). I've mentioned briefly on here our struggles with Caden eating since we moved up here. About 3 weeks after we had settled down, all of a sudden one day he quit eating. In fact, I thought maybe he was getting sick it was so sudden. But, as time has progressed, here we are 3 months later and he has done nothing but digress. This could get way to long, so I'm going bullet form on ya'll:
- Stopped eating the end of April, I gave it some time to get better knowing we had his 18 month appointment coming up in May.
- At this 18 month appointment he had gained NO weight from his 15 month appointment...was still down in the 2-5% in weight. I shared his struggles with reflux, trouble with change, and how this wasn't just a picky, new-found-toddler personality change...he was NOT eating...no nutrition! going to bed without dinner! hearing his stomach growl! refusing to touch things he once devoured! His Ped recommended a feeding clinic up here that deals with children with eating disorders...yes, my SON with the eating disorder, not my daughter as stereotypical as that sounds. I briefly mention I bet our insurance will give us a fit with that, but I'll try. She gets us a referral in.
- End of May: wouldn't ya know it...our insurance denies us going to the Clinic. That's ok, our son needs help, we'll just self pay. Oops. The initial evaluation appointment is $1,800! Plan B - time to turn Mother Hen on the insurance co....again. :(
- Insurance demands we go through the state program (like they did in NC)...it's called Help Me Grow up here. I start that process (yes of course you have to start over in a new state....it's too easy on the family to just transfer records from another state! ha!). Of course it takes several weeks to get paperwork filled out, returned, an eval scheduled, an eval cancelled, an eval rescheduled for a time Ryan can't take off work so that means Jenna Bear gets to go too - oh goodie. All of this, remember, when I'm hardly standing or sitting upright being so sick with baby.
- We go to Help Me Grow Eval where Caden obviously fails in OT (feeding himself). However, after looking at his records and how we tried the State Program in NC only to have him go backwards in this area, THEY even say we need the specialists at the Feeding Clinic...they probably can't help Caden! I mention to our Case Worker our insurance issues and she tells us about BCMH - Bureau for Children with Medical Handicaps. It's a wonderful program up here in Ohio that pays for your child to have diagnostic testing if your Insurance won't! They do not pay for treatment, just the diagnosis if your child qualifies having a handicap.
- Mid June: We set up an eval with a Public Health Nurse to see if Caden qualifies. I ask friends to pray he shows his true need and doesn't decide he's hungry that day unless he is totally healed! She comes, observes and agrees Caden needs help.
- In the meantime, here is what Caden is eating: crackers (animal, graham, Nabs, zesta etc...) fruit and frozen waffles. That's it folks! Everything else is a blue moon miracle. No meat, no vegetable, no pasta, nothing. So please imagine my frustration trying to get nutrition in him, burning things so they are crispy, putting things on crackers, in between crackers, covered in chocolate...anything! only to have him cry and scream at first, then just sit there and eat nothing. So we have started spiking all of his drinks with PediaSure to get some calories and protein in him.
- So, yea! we qualify through BCMH to get an evaluation done at the Feeding Clinic...huge answer to prayer! Of course they have a one-month waiting list so we go to NC hoping in a familiar place he will go back to eating again, but no. He doesn't. :(
- Last Thursday - we spend 4 hours at the Feeding Clinic where 5 specialists (a pediatric specialist, a nutritionist, a psychologist, an occupational therapist and a speech therapist) all observe Caden, give him physicals and tests, watch him eat etc... At this appointment he was down to the 1.8 percentile and had only gained .9 lbs in 7 months. pitiful! This brings us to now...we are waiting (takes 1-2 weeks) to get his diagnosis and treatment plan from the clinic.
So please pray with us that it is something that makes sense, will help him and that we will find an easy solution with our insurance to get him treatment he needs. Pray for patience on our part...trying new things for Caden seems almost like a waste and a for sure disappointment, but we can't give up on exposing him to nutrition! And pray for Caden to grow! When he doesn't eat, we can't get his medicine in him for reflux, when his reflux acts up, of course he doesn't want to eat!, when he's hungry, he's fussy and so goes the cycle...The next posts will be upbeat, I promise! :)
