Today is our ten year anniversary! I can't believe it has been ten years. Poor Gayle thinks it has been twenty. Any who, I got my wonderful wife of ten years some flowers. I tried to think of what I could get her for putting up with me for a decade and I figured it would take bill gates to buy it. So instead she gets some flowers and most important ME!!
We are back! Our trip to Sheridan is over, it actually ended about four hours after it began. We had a few events and came home. The trip started by packing pretty much the whole house, and the people inside. I had an odd feeling to take along a spare car battery incase of an emergency, remember this battery it plays a significant role later on. We started for Kemmerer. Through all the miserable construction the generator died, which means the a/c and Owens power supply died. I thought it was from being low on fuel. My plan was to fuel in Kemmerer because Wyoming gas is always cheaper. We got to sweat out the remaining twenty miles into Kemmerer. I shut the motor home off to fuel and got the generator started back up. I went to start the motor home and it almost wouldn't start. So I sat at the maverick and contemplated the remaining five hundred and twenty miles left in our trip. I pulled the motor home into a vacant store lot and turned it off. I thought it would be better to have the thing die and not be in front of two gas pumps. I went to start it back up and no go! The ole battery was dead!
So I got out of the motor home and started to talk to and like all of my imaginary sailor friends. I grabbed the spare battery that I got for Owen, and muttered under my breath the whole trip around the motor home. Gladly I had thrown in some jumper cables also. I opened the door to see if the outfit would start and saw my entire family, except Owen, on the motor cover between the front seats. I was still talking like a sailor when I asked why in the ------------- is everyone standing in the front. Come to find out my curious five year old found a garbage pail with a dead mouse in it. The whole operation came to a halt until I emptied the pail. So back to my jump starting job, the motor home started. I figured we had only come forty miles, so we better go home and find out the issues. We got home and found out that we forgot to hook up the two batteries that help out the generator. That is why it drained the engine battery. So we all giggled that we had a family vacation to Kemmerer. Abby came down with a cold, so we never did make the attempt to try again.
We are going on a mini vacation, cross your finger, toes and everything else. We are headed to Sheridan, Wyoming, to our calf sale. We might even poke into South Dakota and see the ole presidents. That is if Owen allows it! We borrowed my brothers motor home and just might not come back. We will document the whole trip, as long as our five year old doesn't find the camera.
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!
"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!
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.
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.
We are a family that have learned we have no control of our future. We are taking it a day at a time and enjoying the ride.
Lenn and I have four children. Two of which were born with a very rare muscular disorder. Neither one have an exact diagnosis but it is some kind of Spinal Muscular Atrophy.
Our other two children are healthy and active.