Our first deleted doctors trip

We had our first Salt Lake trip last week. We took lots of pictures and were really going to spend some blog time until our five year old came in to the picture. Abby decided she was going to work with the camera and somehow erased all of the pictures off of it. So the past month is nothing but a faded memory. We were really proud of Owens' bed at the hotel too, we had two couch cushions on top of his wagon for his bed. We were going to brag about how we can put our seven month old on this type of bed and you can't. But once again we are going to have to close our eyes and imagine it. The kids got to swim for the two days and that got erased too. We went down Wednesday for an appointment with a pediatrician, Dr. Murphy. It was a good visit and we got the trach visit done at the same time also. We got to the hotel at about 4 and left the house at 10:30, an extremely long day. We were all needing that relaxing time. The next day, Thursday, we went to the NICU and saw Earl. Then we headed to an eye appointment, hence the glasses in the above photo. The eye doctor said everything looked good, so we headed for home. Made a quick school shopping stop at Park City and out of the rat race we went. Owen did great for the trip considering it was the biggest trip we have made since we came home.


Owen wondering if he just closes his eyes, Abby will magically disappear!

I finally got a new diaper changer and she enjoys it. So the handful of diapers that I change each kid has drastically gone down!

News and Tidbits

"In regards to the protein being present it means that if the protein were completely absent that would have been confirmation of x-linked SMA, but since there were some protein present that is no guarantee that it is functional. So basically nothing can be ruled in or out yet."

That is the message we got from our SMA doctor the other day. That is from the blood that got drawn on January 20, 2008. We have ruled out three SMA's. So it pretty much tells us that Owen has Owens disorder.

I was listening to Paul Harvey, my hero, the other day in the swather. He was talking about sleep apnea and the people with irregular sleeping patterns, and how they die sooner of unlikely causes. I just about wrecked the ole swather. Granted I don't have sleep apnea but the other is just down my alley. Not to pitty me but I haven't seen a full nights sleep in a couple months and poor Gayle is on the same ladder just higher up. I guess I should be happy getting the chance to sleep in my own bed, but a half a dozen alarms each night is getting old. I won't even start to talk about the feeding pump. That thing is a couple alarms shy of leaving this house in a hurry. One night Gayle set up the feed rate to 95 instead of 45, because she has issues seeing the screen. I went to bed at 11:30 and that thing starting chirping at 1:30. I flew out of bed thinking it was the vent or 5:30(when it usually goes off). I don't know about anyone else but if I get woken up between one and four hours of sleep, I might as well not even gone to sleep. I shut the thing off, said some horrible words, and went back to bed. That's not all that goes on in this house after the lights go out. Usually we have at least one or two other kids in our room at different hours of the night. So to say sleep disorder is saying come spend a night with us! And if I die it will probably be from complications of throwing the feeding pump!

Another month older!

Since we really don't know how many more third of the months we are going to have, we are going to celebrate. Another Happy Birthday Owen! He is seven months old today. I forgot to put his numbers on the last blog so here they are from Thursday. Owen weighed in, with his feet and legs hanging off the scale, at 18 pounds 8 ounces, and a mere 30 inches long. He is exceptional in every category! We took him off the supplemental oxygen the very next day and he is doing great. Happy seven months to Mercydez Haws, Owens hospital birthday buddy. Not to forget Owens' special sma buddy Daniel, Daniel is going to be TWO tomorrow. Daniel and his parents got us through some pretty dark times.

Six month and kindergarten shots

Yesterday was shot day. We finally met Dr. Depalma in Evanston. She accepted Owen as a patient and was one of the keys to coming home. Owen had his six month check up and Abby needed her kindergarten shots. We spent all morning getting ready and getting Owen prepared for the trip. At the appointment, Abby got four shots, and Owen got three. Abby was tough and took hers pretty well. Owen on the other hand was mad from the first shot through the third. Dr Depalma showed us a back door that we could use in future visits to avoid the waiting room. She seemed really good and the older kids enjoyed her. I had to take wal marts favorite shopper to the store, Gayle had not been there since we moved home. I stayed in the car with Owen. The trip home was not as peace full as the trip up. I think the day was catching up with Owen. We got him back to his bed and he pretty much slept the rest of the afternoon. Last night we were having problems with his sats staying up. I did the cough assist and it seemed like he was still upset. So around midnight I hooked up some oxygen to the vent. It is the first time he has needed oxygen since the hospital. I am hoping that it is from the shots and we can get back to normal. I even passed the comment to Gayle about skipping the immunizations and got shot down. Abby got a my little pony set and was fine. Too bad we couldn't bribe Owen with the same thing and have him be fine.

Owen, the minute he hit his pillow!

Cokeville Parade

We decided to put Owen in the twenty fourth parade in Cokeville last Saturday. It began on Thursday, when a bunch of teenagers on a youth trip, showed up to do yard work. We were still debating on how brave we were to go to the parade. So we had some of the young women make our posters in case we went. They did a great job as you can see by the pictures, I would have never come up with what they drew. To be honest I had gotten some stencils in Salt Lake. The morning started chaotic as usual, Owens' treatments, final touches on the float, breakfast, and getting the other two kids dressed and fed. And of course, we had the camera with us so the pictures are of when we turned and had to wait for the end of the parade to come around.

It was a way to thank the great community we belong too. Every time the parade stopped we had two or three people coming into the street to see Owen. We had a lot of "welcome home" and people clapping. My old 64 chevy made a great float and the kids got to throw a lot of candy. Bentley was depressed that he wasn't going to get any candy, but I think in the end he was happy. Thank you to all that helped this become a reality!