DENIED

I'm very disappointed and frustrated that it took so long to deny us. It's been a terrible waste of time. They seem to have not understood the request either. They denied us a "third oppinion" citing the strong reputation of Children's Hospital Boston. We don't want a third oppinion! We want Griffin admitted to Kennedy Krieger's behavioral feeding therapy program. Grrr. I of course find this out at the end of the day when I can do nothing but wait until the next business day. We will of course apeal the denial but how long will it all take this time to get a decision?

And waiting...

I feel like saying "of course we're still waiting." Of course there is nothing new to report. I make my daily 8:30 am phone call to BCBS to find out where we stand and then I call to prod the appropriate medical providers office. I told Dr. Fishman's (GI) secretary that I didn't want to be a nuisance, but I planned to call each morning until Dr. Fishman returned the call of the BCBS medical director. She laughed and said that she completely understood and that she'd talk to me on Monday morning. -I hope not.

There's happy Griffin news to report. He is now 27 pounds and at the 30th percentile for weight! I carry a growth chart with me to show friends and family rather than pictures right now. It's amazing. There's almost a straight vertical leap. Yay for the Periactin!! I should really post some pictures.

Waiting...

And here we are still waiting. Aparently there needs to be a "physician to physician" conversation between our GI dr. and the reveiwing physician from BCBS. They are retrospectively questioning our initial evaluation by Kennedy Krieger even though it was already paid for (by BCBS). That's very frustrating. I also spoke with our contact (Kristen) at Kennedy Krieger to see if she had heard anything different since she had heard more detail than I had last week. Sadly, no, but she did reassure me that Griffin is high on the list and that they want to get him into the program as soon as possible. I told Kristen that I would call her several more times until we are approved just to hear her reassure me about trying to get Griffin in ASAP. It does make me feel better to hear it each time. It also makes me feel better to call insurance each day to hear that they are indeed actively reviewing Griffin's case. Everyone else may get annoyed but if it lights a fire under someone then it's worth it.

Well, if I held my breath I'd be blue and passed out by now. Insurance couldn't give us a decision on Friday. They need to speak with Griff's GI doctor in Boston but she's currently on vacation. Now we wait. (and wait, and wait...) I don't have a gut feeling about how things will go. I don't want to get my hopes up only to have them dashed. The way things are going, I'll be around to help Nevin get adjusted to his new preschool classroom and teachers and maybe pick out his Halloween costume. Those are all good things. : )

Holding my breath...

It's only a few hours now until I can call insurance and find out if they have approved Griffin's stay at Kennedy Krieger Institute. I called yesterday and was told that there'd be a decision by noon today! The hours can't tick by fast enough right now...

Just Waiting for Insurance

We have gotten several calls from Kennedy Krieger, keeping us updated as to where we are in the process of "getting there." Currently they have written a letter to our insurance company detailing what Griffin is currently doing/not doing by mouth and via tube feedings. They have gotten some feedback already asking for a specific referral from Dr. Ingerowski, our pediatrician. We are so ready to get Griffin started at KK.

Last night was a terrible night as he threw up several times overnight (lots of late night bathing which Griff just loves.) He's had such great success gaining weight and keeping feedings down since he has been on the Periactin. He has gained 2 lbs. this month alone. The problem though is that he needs to cycle off the medication so that he doesn't build up a tolerance to it. Ideally we would have 3 weeks on then 3 weeks off but Hugh and I just can't do it. The vomiting is just too much to deal with, especially over night. (So THIS is why we registered for so many crib sheets!) He has been off of the Periactin for 1 week as of today. Dr. Fishman (GI dr. in Boston) said that the 3 week cycle is arbitrary and we can adjust as needed.

I started him back on the Periactin this evening.

Testing, 1, 2, 3...

Here we are testing out our new blog! I hope this works for us.