Well, it has been a while since I actually blogged about current goings-on and I thought it was time! I owe a couple of you emails (Cory!) but honestly I haven't been on the computer very much in the past 6 weeks or so. I have really seen a decline in my stamina and my arms are getting weaker so sitting at my computer has been a real drain. I'm working on some solutions to that, with the help of my friends Kent and Vicki. I'll keep you posted.
My breathing has become more of an issue of late, as well. I have found that minimal exertion leaves me short of breath and unable to speak in sentences longer than 1-2 words. I saw my neurologist a couple of weeks back and he referred me to a pulmonologist (lung doctor) who I saw on Friday. I was very impressed with him and am happy to say that we've at least got a "plan". My RT (respiratory therapist) came and traded out my BiPAP for an AVAPS, which is essentially a ventilator that is non-invasive. For those of you "medically inclined", the AVAPS has a tidal volume, rate, max/min IPAP (inspiratory pressure) and EPAP (expiratory pressure...sort of like PEEP). The pulmonologist ordered a gazillion labs to make sure that some other medical problem (besides my ALS, asthma or obstructive apnea) isn't contributing to my breathing problems. He thinks that it is likely a combination of my ALS and my asthma. So, I get to start on nebulized steroids and long-and short-acting bronchodilators.
My balance sucks at times and my legs just feel weak after I walk. I am using my wheelchair more when transportation allows me to take it 'with'. Unfortunately, our wheelchair van spent a month in New Whiteland with my buddy Kent in charge of getting it fixed (which he did....God love him!). We got it back last Monday and yesterday we drove it for the first time and the brake light is on and the brakes are NOT working right. SO.....here we go again.
The good news is that we are all healthy and Phillip is even here visiting this weekend. It is so great to have him around. He has become such a wonderful young man. He is eager to help and is always very polite. He calls Amy and me "darling" and "my dear" (and Christopher is "buddy", "bud" or "bro"). I can't believe that he will turn 21 in less than 2 months!
Catherine is finishing up her first year of her master's degree at ISU. She taught freshman English this semester and has gotten a real dose of "what is different between an 18 year old and a 22 year old"! Light years! And (as those of you old geezers like me know) there is more revelation to come! Look at the chasm between 22 and 30!
Christopher is eagerly awaiting the arrival of the "baby mantis[es?]" (plural...we have 5 mantis egg sacs in our yard). I'm just ready for us to have the last freeze solidly behind us so that the beautification of the yard can begin. I am so excited because Michelle and Aaron Hoard are bringing some of their church friends up on May 4th and will help get some of the weeds pulled, and some other yard "sprucing" done! (Thank you guys!)
It has been a beautiful week here in central Indiana, but alas, the second of two cold fronts in as many days will move through tomorrow and next week is supposed to be quite a bit cooler....but we'll warm up again soon after that! I'm ready for get-some-sun-on-the-deck weather!!! I am SO sick of being couped up indoors! I have some small flower plants started from seeds (too early) and a couple of geraniums to put out as soon as the frost danger is passed.
Well, that's about it for now. No philosophy, religion or general sappy sentiment...just love from 'me to thee'.
~Claudia
