Re: Dewayne-long reply to Jan

[Guest guest]

Dear Jan,

Thank you so much for your quick reply. I needed reassurance I guess.

I asked for a scooter script from his neuro on the last visit and he said oh

no we have to keep him mobile and walking. We didn't want to make him

dependent on it, but it would be nice to be able to enjoy things as a

family. For instance, I took DW and Spencer to the State Fair last

Sat.(Either brave me or stupid me) Of course we had to make 3 days of

it....went down Fri. p.m. Fair on Sat and back home Sunday. When we went to

rent a chair, they were all out. Well.....we went very slow paced all day.

DW didn't want to ruin the day....we sat alot but it still about killed him.

I have a push chair I guess I need to carry with us.

DW can't follow tv anymore either and when I say something or make a

comment, he nods....then about 5-10 minutes later, he'll tell me what I have

just said like he was just telling me for the first time. At first, I'd say

" honey I just told you " ; now I just agree with him and go on. It is so sad,

he was so intelligent and full of life.

On a happy note, we saw two of our goat babies (4-H goats we sold this

Spring)

show and out of 170 entries, our little girl came in 4th and the boy won 1st

in his class. I'm like a proud mama.

Talk to you later,

Love and prayers,

Lynda

Dewayne-long

>

>

> > Hi to all,

> > Email problems have kept me from getting lots of post....if I have

ignored

> individual messages, I will get to you I promise. I didn't realize I had

> problems because my only sister has just had 3 surprise bypasses on her

> heart this past week. Didn't check my email and when I did.....none came.

> > Dewayne's breathing is getting worse and worse. We've had a very bad

> month so far. We do go to the Drs tomorrow to follow up the sleep study

and

> then see his neuro. The methadone and the 4800 mg of Neurontin has become

> useless.....well I won't say useless....can't imagine what he'd be like

> without the drugs. Unfortunately his mind is going so fast too. He is

> making dangerous decisions and has no sense of judgment. His father stays

> with him while I'm working....I'm having to explain things to him just as

I

> do our 6 year old son. I miss him so bad....I just want to talk with him,

> discuss our day, make future plans. Well we kinda did that

> tonight....talked about the will and want to do with certain pieces of

farm

> equipment....not what I meant when I said the future.

> > When I walked in from work this evening and saw how labored his

breathing

> was and how bad he looked, it hit me that this could be the beginning of

the

> end. I thought I was so strong and was ready for anything, but I guess

I'm

> not.....I reckon I've been kidding myself thinking everything is going to

> get better....guess I needed that false hope to keep myself halfway sane.

> > Well now, I didn't mean to go on and on....babbling like a broken

record.

> I know there are a lot out there worse than our situation. I think I am

> exhausted and emotional about my sister too.

> > Thanks though for letting me rant. I love all of you out there and

just

> pray that one day there will be a cure for this blasted thing of a

disease.

> > Love and prayers, Lynda R.

> >

> >

> >