Alexa is doing fairly well. She has had a chronic problem of sounding like a little piggy when she breathes. I know I have mentioned this before, and it drives me crazy! Her lungs sound clear, it is junk in her throat/nasal area. It seems no matter what I do, I cannot get this sound to go away. We suction, we cough, we drain, and we do it all some more. We have tried allergy medicine, and robinol. It is hard to suction out the back of her throat because she bites down (hard!) on the suction catheter. As soon as she sees the suction cath. she clamps her mouth shut! I never like to say anything because I always jinx it, but I think the allergy medicine may finally be helping. The last 24 hrs. she has sounded a lot better, and I am not getting out near as much when draining/coughing and suctioning. Hopefully we are on the right track! Other than that she is doing great, vitals are good, she is happy, and when she is not happy she lets you know about it!
I never mentioned that we bought a full size conversion van for her on Mother’s Day, the day she was admitted to the hospital. So we had never used it until last Monday when we took her to the doctor and it was so nice! Not having to move her in and out of the car seat and stroller was incredible! It is an older van (1994) that already had the lift and tie downs installed in it. It belonged to a family that sadly lost their son in March. The lift is only 5 years old, and considering the age of the van it is in really good condition. We only need it to take her to and from the doctor and around town (again I don’t wanna jinx myself!)so we are hoping to get a couple years out of it. The nice thing is that the company that installed the lift is only an hour away, so we can get the lift moved into another van down the road. We still have our other 2 vehicles, which is nice because Amber turns 16 in 4 and a half months and she is eyeing her Dad’s Equinox!
Another exciting thing is that we are getting things in order to finally go to Salt Lake City to see the SMA specialist there. We had kind of put it off because we were supposed to go to the SMA conference and didn’t want to do two trips so close together. Since that did not work out we are on to plan B. Our insurance has approved for our visit there to be totally covered out of network, because there are no SMA specialists here in AZ. Alexa needs to have some tests done here first (bone scan, bloodwork) we are hoping to get that taken care of soon so we can travel to Utah in August or September. We are very excited to finally meet the doctor there as she has helped us many times with Alexa over the phone and computer!
I guess that is all for now. Have a wonderful week and Happy Fourth!
