An update

This is what it looks like when I leave for a weekend now. This medicine schedule was from a few weeks ago when I spent a Saturday night at my sister's house. It took me at least 30 minutes that morning to get Bailey's medicines, vitamins, and food sorted out and labeled! Thankfully, his grandmother is willing to take care of him and make sure he gets all his meds at the right time. And maybe I'm a little OCD, but I think having everything in the baggies and the schedule make it easier for her. Thanks, Mom!

I haven't updated in a while, probably because I hesitate to put it in writing that Bailey's walking is a lot worse lately. He's having a lot more trouble with his back left leg, knuckling more often than not and stumbling around, especially in the house. He walks much better outside but still has some trouble there. He has been doing well with his exercise walking though, as long as it hasn't rained. He HATES to get his paws wet! He is still in really good spirits and will play with his new toys and ask to be loved on. I borrowed my sister's camcorder and have been getting some video of him that I know I will always be glad to have.

He goes back to the vet Monday for a checkup and so we can switch him from the prednisone to cyclosporine for whatever has been happening on his face. He also desperately needs a nail trim and I'll probably ask for a complete blood panel to check his liver again. He'll have to have a bath this weekend before he goes on Monday and I am NOT looking forward to it. He absolutely hates the bathtub.

I hate this disease.

God, please heal my baby! Watching him decline is ripping my heart out!

Frustration

I feel like flinging myself to the floor and throwing a nasty temper tantrum. Too bad I am not three years old anymore and tantrums are no longer expected behavior...

I almost had Bailey weaned off of the prednisone. We were down from 50mg every other day to 20mg every other day. But now those horrible bumps are reemerging on his poor little face. I talked to the vet about it yesterday and of course she wants to put him back on a high dose of the pred, this time starting at 50mg TWICE each day. That's double what he was on at the beginning of all this mess. She also said the bumps must be something autoimmune (in addition to DM? instead of DM???) but she does not know what it is.

He was doing so well. His personality was finally coming back on the lower dose of pred. He was feeling better, playing a lot, running around, loving on mommy. Now I know we're headed right back into what I call "survival mode" where every need/desire is an immediate need that needs mommy's immediate attention and can only be communicated by barking indignantly from his resting spot. He will be miserable. But without the pred, the welts on his face might get huge and painful again and he would still be miserable.

His back left leg has been really bad the last couple of days as well. I have no idea if the pred was actually helping him or if coming off the pred is revealing the muscle wasting it could have caused because he was on it so long. It was hard to watch him walking around outside this morning and losing his balance or falling every time he put weight on his left leg. He was doing so well just a couple of weeks ago. We both want off of this roller coaster!

We might have to make another trip to a specialist. I am thinking it might be good for him to see an immunologist at this point, and maybe we need a second neuro opinion as well. But just thinking about it makes me nervous, because I know how nervous and scared he will be to have new people messing with him. And what if they cannot find anything treatable either?

Abba, help me to know what to do for Bailey. And please, please, please heal my baby! Keep me strong for him. Please let there be better days ahead for him. Thank You that he is still walking (with difficulty) and still in good spirits.

Now maybe if I close my door and flail quietly, I can pull off a tantrum without anyone knowing . . . .