August 2012

August 10, 2012 - Almost another month has gone by.  We've been busy with baclofen pump adjustments, celebrating Ryan's birthday, going to Coulee Dam for a visit to my family, fighting with insurance, working around the house and playing with the kids.

Although Ryan is fighting a junky nose right now he's doing really great.  We don't have the baclofen pump just right yet but we've gone up a lot in the last 2 weeks and he's back to being almost ridiculously happy.  He's talking more, not complaining and feeling great.  We saw his neurosurgeon last month and they were very happy that is has been 2 or 3 years since they have seen us.  They want us to come back next summer and we're going to do an MRI to see what Ryan's new baseline looks like in his brain.  We'll also have an x-ray to check the tubing to see if we're still a bit away from needing to have a surgery to adjust it's length.  We got him new AFOs.  The therapist wanted to try a different kind and none of is sure it is the right way to go but we're going to try them for a few weeks and then see.  He's been doing pretty well with eating - impressed his feeding therapist eating Cheez-Its and pot roast.  Still not getting better on the drinking though. 

We had Ryan's Boise birthday party on the 21st.  He did really well helping open gifts this year, he had about a 1/2 slice of cake and he actually blew out his candle.  That was huge for us as he has never been able to before.  We got him a slide and he squeals walking up the steps and enjoys the ride down (with assistance of course).  Nurse Mary made his cake and it was so yummy! 

The next week we headed to Coulee Dam to my mom's for a visit.  We took the kids out to see my brother Bob's airplane.  It is an RV7 kit airplane that he built himself and it is gorgeous.  He can get it up to 220 miles per hour.  We didn't get a ride this time but checked it out.  Megan is so in love with airplanes but yet was very bashful while we were there.  She did enjoy watching the private jet take off while we were at the airport.  The kids enjoyed playing outside at my mom's house.  We'd put Ryan in his walker and let him go and Megan would just run and run and run.  She was very proud of herself for being able to open the gate to go into the backyard.  She just couldn't get out once she went back there and closed the gate.  We went down to my sister Sherri's house on Friday.  Megan loved playing with Sherri & Pete's dogs.  We got the kids into her pool and I think they were one of the first ones in and one of the last ones out.  They loved it.  Saturday all of my siblings and all but one or two nephews/nieces came to Sherri & Pete's for a big pool party/Ryan's birthday.  We got in the pool by 11 and were in it until about 7.  Megan & Ryan were pretty much in it the majority of the day.  Megan went off the diving board a few times (sitting at the end of it and falling in) and she did a good job jumping in off the side.  Ryan did great sitting on the side and letting me pull him in.  We did cake and presents there.  He got the candle out but he did not want any cake.  He got lots of gifts - he's definitely spoiled!  It was great to see everyone although in that setting I didn't totally feel like I got to get a good visit in with everyone.  I think we had between 35 and 40 people there.  I think each kid got some individual time with each aunt and uncle so that was great.  To this day she still talks about it and asks about her aunts & uncles.  What we learned is we think we need a pool.  Not going to happen any time soon and not even sure what would fit in our backyard but it may be one of the best things we could do for Ryan.  Sunday we went back to Coulee along with Sherri & Pete and went out to the beach (Spring Canyon).  The water was a bit too cold for the kids but we had a good time and Ryan actually crawled on the grass.  He's has sensory issues with grass and used to hate it.  He's just barely been walking on it with bare feet so crawling on it in shorts was big for us!  We had a great trip and we happy the kids did so well on the drive up and back (thanks to our two iPads) as well as sleeping in new places.  We hope to go back up next summer.

When we arrived home we had a letter from our insurance that basically said that they are going to deny our appeal because the therapists notes say he has a developmental delay and that isn't covered by the policy.  I was so angry because we even addressed that in my letter, the pediatricians letter and the therapists letter and they never looked at that - they just looked at the notes.  We met with my attorney which luckily used to be a Blue Cross of Idaho attorney so he knows the game they play and discussed how to do the 2nd appeal.  I'm going to fight it again because this is ridiculous.  They are just being jerks.  The grievance/appeals coordinator actually said to me 'Hasn't anyone told you he's developmentally delayed?'  That made me angry because all of the documentation says he had brain damage at birth which led to cerebral palsy & hydrocephalus and that is why he is delayed.  So I said he has a medical condition that is causing it.  They just aren't listening.  My attorney thinks we could win this easy if we went to court.  We don't want to go that far (or pay those legal bills) when we really aren't out much right now because Medicaid is paying.  On 15K of bills I think we had to pay $29. So we'll do the 2nd appeal and if that fails we may do the 3rd and then give up.  Just depends on how angry I continue to be on this as I want to fight them to the bitter end.  We have to get the 2nd appeal in before the end of September so hopefully we'll know more by the end of October.  We've got a lot of research to do and are busy getting documents from Simplot and Blue Cross.  Then we'll have a couple more meetings with the attorney to make sure we have all the ducks in a row.  One positive has been we finally got the speech therapist to stop using the developmental delay code.  She is the reason we are having this issue - just wish I could have got her to change the code before we ever got to this part.  Please pray/keep fingers crossed for us!

Megan is doing really well outside of also fighting a junky nose.  She's talking up a storm.  One night at dinner we were counting numbers and she started counting in Spanish.  Scott and I looked at each other and were like what?  We really do have her in a great daycare/preschool.  I took her with us to Ryan's feeding therapy this week and the speech therapist couldn't believe how well she talked.  She's big into the 'No I do it' stage.  She's saying and doing stuff that keeps us laughing but at times she won't listen and we've been challenged by that - threatening to take away the iPad has been a big help!  We've been working on the potty and man is she doing good.  Last weekend we started using the potty ever couple hours and she would pee or poop every time.  She's been doing really well at school too.  I think we have a little way to go but we're close!  We got her a pink balance bike and have been working on that on the weekends.  It's going to take a bit of time but the hope is she'll get her balance to ride the bike and then won't need training wheels.

Other than that we've been busy with a yard project and work.  We will probably we quiet for a bit as we have this insurance appeal to fight, getting Ryan off to kindergarten, my project at work and football is about to start.