Tuesday, October 04, 2011

The Good, The Bad and The Ugly News about Luke

The good news first: Luke is doing so much better lately, he's a lot more alert and happy, he's been gaining weight again and looking good. Yesterday we were invited over to our good friends the Young's home for their annual Harvest/Apple Pressing Party. They had over 100 people in their home and yard, it was supposed to be an outside affair, but we had one of the worst rain storms we've had in a long time shortly after the party began, Isaiah, Ezekiel and Lily got soaking wet playing outside, but they had a blast:-) Luke did great he stayed awake the entire time, which for him is amazing, you see when Luke is uncomfortable or stressed he will usually just fall asleep so the fact that he stayed awake the whole time tells us all that he had a great time. It was humbling and amazing to meet the people at this party most of them attend a church near by our home and many of them faithfully pray for Luke weekly. As they would come up to meet Luke and myself they would tell us how they have prayed for Luke for many years and many with tears in their eyes would say how wonderful it was to finally meet Luke.

Here's a picture of the day we spent at Mt. Rainier last month
The Bad news to report about Luke is that as I mentioned in my last post he's been having some pretty bad seizures. He's had seizures for a long time but they were usually only caused when someone would touch his right hand without telling him first. But lately the seizures were coming more often, lasting longer and very scary to watch. I actually have seen him have some really bad seizures at night, which has answered a question that I've had for along time, what causes Luke to go to bed with great numbers on his oximeter only to have them all change within a matter of time. When I watched one of the seizures he had at night I saw him go from breathing beautifully to gasping for breath, sneezing and then his o2 numbers would plummet and his heart rate would go up. We started him on a new medication called Banzel, just last week as we had to wait for it to come into our pharmacy as it is a new med to America, it had only been available in Canada for a long time. The medication has some pretty bad side effects, which scare me to death, but getting the seizures under control is more important right now than the side effects. It will take 5 weeks to get him to the full dose as it is such a potent medication it would be dangerous to start him off on the full amount right away.

The ugly news came as a big surprise today when I called our insurance company and found out that they are no longer paying for Luke to have OT/PT services. When I took Luke into see his OT last week he mentioned that the billing agency for the hospital told him that Luke no longer had PT/OT services, after calling around he thought that was incorrect information, but no after spending about 30 minutes today on the phone I found out that our policy no longer covers his diagnosis. It sent me into a real spin as I realized that we could be getting a HUGE bill from the place that he's been going to the last few months. I was also so sad to realize that something that has benefitted Luke and helped him will no longer be available to him. It's sad to think that if Gordy and I made less money we could get services for free, kids that have SSI or DSHS through our state get at least 1 visit of each PT/OT/ST a week. We get NONE because we are middle class Americans. Our Medical system is broken and I'm pretty sure that the new OBAMA care is not going to fix it. Everytime Luke walks into the Children's Therapy Unit where he was going for PT/OT it would cost about $500 a hour, our insurance would pay their adjusted amount leaving us with a bill of about $80 a visit, now we would have to come up with the full amount, not going to happen:-( Oh well, I just hope that we will be able to successfully appeal this and get it to return.

Can you spot Amy, Luke, Lance and myself off to the right of the bridge??
Once again I'm up way too late blogging tonight, I'm hoping that since I just went to change out Luke's oxygen tank that he will not alarm anymore tonight so that I can get a full night of sleep, it's been way to long since that has happened. Oh wait the night is already about 1/2 way over maybe that will happen tomorrow night, I can always hope can't I?

Love in Christ,
Luke's Mommy Sue

PS Just wanted to let you all know that the money for the retreat has been slowly but surely coming in, not quite there yet but a whole lot closer, PRAISE GOD!!

PSS Also wanted to let you know that I'm going to be on 24/7 MOMS webcast tonight. Here's the link:

Double The Fun Double The Giveaways - This week on 24/7 MOMS Live

Double The Fun this week with my long time girlfriend Sue Searles who will share 21 Tips To Raising Great Kids and Double the Giveaways as we kick off the holiday season early.

Chatting, winning and being in the MOM know are what it is all about. Don't miss out join in the mom fun.

Two shows Two times right here at 24/7 MOMS the TV show for moms on your computer at www.247moms.com The mom chat and fun all begins on Tuesday night at 6pm PST or 8pm PST .

1 comment:

Teena said...


Much love,