Three Month/ONE YEAR!!! Check

Wendesday Les had his regular 3 month check with Dr. Weiss, the neurologist.  It also is the one year mark since he received the diagnosis.  What a year it has been!

On our way home last evening, Les was kinda down.  He said "ya know, they never tell me good news.  They just confirm what I already know - my symptoms are getting worse."  Yes, this is true.

Les' first appointment of the day was with the wheelchair specialist, who had a wheelchair rep there.  They went over all the options with Les and Les made some decisions about what he would like to order.  Les isn't getting EXACTLY what he wanted, but it will still be a pretty cool chair.  He had those two guys laughing several times.

Next up was Dr. Weiss.  We barely got to see nurse Jen, which is a bummer.  We talked with Dr. Weiss about the larynx surgery, and he is all for it.  He said it is a "cutting edge" surgery but feels it will benefit Les.  His excess saliva will be drastically improved; the plastic trach can come out and Les will be able to get more air in, PLUS not have to deal with cleaning/suctioning the plastic trach.  We were still quite hopeful about Les' swallowing; Dr. Weiss wanted some swallow tests done.  That 45 minutes with Dr. Weiss goes WAY too fast.  We like him so much.

The next appointment was with the speech therapist, Deanna.  She did some minor testing on Les' swallowing.  She confirmed that his tongue does not move at all - which will affect his ability to swallow solids.  She also suspects that along with that, his swallowing "muscles" have probably gone downhill.  She will perform an X-ray swallow test while Les is recovering from surgery.  She said he should still be able to swallow liquids, and maybe blended foods.  Les was pretty disappointed over this.  On our way out, he did a quick blood test to check his liver (because of the meds he is taking).

At this point, he was pretty hungry.  He can feed with his "kangaroo" bag in the car but of course it was plugged and nothing was coming out.  Didn't want to stop in traffic!!! so he was patient until north of the city when we could pull over and he could at least get some nutrition in by direct syringe.  Didn't help the mood out at all!!  But when we got home we realized the cleaning fairy had made an appearance again AND an applesauce fairy had stopped by.  Love those fairies.

That evening, this was the Jesus Calling I read:

I shared it with Les.  We are feeling better.

Please continue to pray about this big surgery on the 29th.