Another crazy week ahead

So, in a previous post I said id never plan another week like we had the first week Chance came home. Well, next week is one of those weeks.

Monday is his ECI evaluation. They come to the house to do it. He currently gets OT thru Cooks home health so he won't qualify for that. But, PT is hard to come by so if he qualifies, that's what I'd like to get. His initial OT eval results...C was right where he should be with adjusted age but like I've said before- early intervention is the best especially to help him with catch up to his actual age.

I also get to call his Pulmanologist to order a pulse ox overnight wear for his o2!! He's been doing really well with be wean from what I've observed. Hopefully will also hear back from his apnea monitor read which was downloaded last week.

Tuesday we're having a gbutton consultation with a pediatric surgeon. After many prayers, tears, more prayers, and many, many more tears we've decided to start looking at the other feeding option. As much as we did not want have to go through with the gbutton, it's going to wind up being in Chance's best interest in the long run. The NG tube he has right now is extremely irritating for his throat and nose. Plus, it leave the stomach airway open which allows for reflux...not good. Then, you have all the ugly tape on his adorable little face ;-(( So, I'm hoping after our meeting, we have a much clearing picture of the procedure.

Wednesday is OT.

Thursday is his pedi appointment.

Friday is his feeding evaluation (thank you Lord) with Our Children's House at big Baylor in Dallas. I'm so beyond ready for some feeding direction and help and an actual feeding therapy plan. They will also be able to predict a time frame they project it'll take before he's take 100% of his feeds by mouth.

We started adding more Neosure to help with thickening and extra calories for growth. It's not helping to thicken. So, calling his GI doc tomorrow to see about trying Thick It. I just feel like we haven't found the right consistency that he will swallow happily and safely. It's been very sad, isolating, and frustrating for me. Imagine having to deal with feeding issues 8x a day, which should be the most natural, pleasant experience. I feel so helpless.

So yeah, pray for my sanity next week.
Other than that, my little miracle is the light of my life.

Aunt Shannon and cousin Kendall babysat on Friday so Joc and I could go to dinner!!!

Chance watching some Baby Einstein. {can't remember if I posted this already}
http://youtu.be/pbjVPEjq7Zs