Saturday, October 20, 2018

PKD Update

Dh and I spent last Tuesday at Mayo in Jacksonville, for an update/checkup.

We got up at 4am, and left by 4:30 for the 2 hour drive, as we had to be there at 7am. Lovely.
Got turned around once on 95 b/c of traffic not letting us get over for our exit, so had to turn
around, drive back down the interstate about 10 miles, then come back up and try it again. That
time, we made it no problems.

They did a whole barrage of tests, as usual, and between those, the social worker, the nurse, and
finally the doctor, we were there til nearly 5pm. Results are as follows....

His kidney function is UP from 14% to 17%!!! Rejoice with me over that. What a blessing! Not
sure how that came about, but we'll take it.

His potassium levels are DOWN from 5.5 to 5.2! This is also great news. He is on sodium bicarb
to lower this, so this made sense, but b/c the SB irritates his gout, he can't take much of it. So it was
nice to see a good result.

All other tests: EKG, scans, ect, were normal. A wonderful update after all!
He was hovering on dialysis b/c of the potassium. His nephrologist was concerned and had 'drawn
the line' at 5.6, so seeing it down was a relief!

Now, the worrisome stuff, b/c you KNOW there has to be some of that, right? Right. :)

The lower ab scan didn't go low enough, so the doctors are not sure there is room for a donor kidney if one should come available. Mayo Jax no longer removes the old kidneys at time of transplant we were told, so it would have to be done before.

Well, if you don't have kidneys, you have to be on dialysis, obviously. But Tony's kidney function is
UP, moving him away from that (as long as all other stuff stays good). So he has to have another scan next Friday.

If he does have room, all good, no further action necessary but to wait.
If he does NOT have room, then Mayo will put him 'inactive' on the list, wait until he does go on dialysis, and then remove the kidneys, as he will no longer need them at that time. Then he will be
'active' again, and open for a kidney if it should come available.

Sigh. Inactive status is like not being on the list. A kidney that is a perfect match would go to someone else, and we would be waiting that much longer. Frustration!

So for now, we'll have another scan, and wait and see. God is in control, and has this all worked out,
one way or the other, kidney or not. Sometimes, the answer is 'no'. ;( But we continue to pray, as we ought, and praise Him for it all. Stay tuned.

PS: Our former Sunday School teacher's wife has been battling her second go round with cancer (she had been free for many years), but has recently learned that there is nothing else to be done. She has at most, weeks. Please pray for Pam, her husband, and two sons, one of which just started college this year, the other a few years older. She was a bright, vibrant spirit who always cheered those around her. Seeing her this way now is heartbreaking, but we know the best for her is yet to come. Still, we mourn our own (temporary) loss. Again, please be in prayer for all of her family as they spend these precious last days with her.

Monday, September 17, 2018

Selective Mutism, the quiet disorder....

This is what Drake has.
He has always been reserved/quiet/shy with strangers, even family he doesn't see regularly.
He will talk and play with his younger cousin, and one other family friend the same age, and also his Nana and her best friend *that invested a LOT of time to gain his trust.

He is homeschooled, but has been in sports, VBS, Awana, church, ect. No interaction with anyone, but he does play the games/soccer/baseball/tennis. There are stories on the Parents of SM kids Facebook group of 15 year olds that have NEVER spoken to people outside the immediate family, even in school. Therapy didn't work. :( So more people/school isn't necessarily the answer.

He is now in therapy, and we hope to start speech therapy soon, too. We pray these can help him 'find his Brave' as the SM community says, and ways to overcome those nameless, choking fears. Please be in prayer for him, he's almost 10.

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Saturday, September 15, 2018

Continues on apace...

Something I must do, not choose to do. Nonetheless, I am grateful for this job.
In 6 weeks, we have nearly paid our credit card off. Only 2, or maybe 1.5 more payments/weeks.
After that, we'll focus on medical bills, then after THAT, savings, God willing.

I figure, two months of work for the credit card, 3 months for the med bills, and after that, all to
savings. BUT, we all know man proposes, blah, blah, blah. I'm sure there will be interruptions to
this plan. Maybe even a halt altogether. Pray it isn't so. We need these things gone, and money to
spare for transplant, living when Dh can't work, ect.

Speaking of, I'm not sure how long he will be able to work, how far away dialysis is, IF a kidney
will come, if he'll work while on dialysis, what we'll do in the meantime, ect. Dh's parents have
helped us one week, and will again if we need it, but they cannot do that every week. Pray that he stays strong and healthy and can work a good while longer.

I know God has a plan for us, and that He's already got this worked out. It's the getting to the 'out'
part that worries me. Just how bad will it get before we get there? Sigh. Prayers for me are surely

Monday, July 30, 2018

Back to the grind....

I am back in the workforce.
Too many demands are being made on Dh's earnings *bills, cc, medical* so this is much needed.
It's not  much, but it will slowly help. Thank you Lord for this opportunity, for my MIL who keeps our son, for all our blessings, great and small.

Saturday, June 23, 2018

Walk-in or Drive-in

Thought I'd share this little blurb from our local Ralph Hickox, owner of BOTH the downtown 'walk-in' theater, and the drive-in theatre. A bit of interesting trivia for you!

In Jesup the term “walk-in” is common and everyone understands what it means.
But, Do you know the term “walk-in” is a Jesup term not used anywhere else?

When folks come here and that is said .... they say what is a “walk-in”? When UGA sent in that team to study downtown they went on and on about that and Jesup having this unique combo.
You will be hard pressed to find a open downtown “walk-in” cinema in the same town with a “drive-in”Drive in theatre. That’s why it’s a Jesup term 

I personally don’t know of another location with both in the country.

Here is a sample of local conversation: "Want to go to the movies?" "Sure, walk-in or drive-in?"
We don't have much in the way of things to do in our county (I like to say we are an hour from anywhere) aside from hunt and fish, but we surely can boast of two theaters! The 'walk in" as we call it, has been around since the 1920's, and Mr. Hickox has recently refurbished it back to it's 20's roots. It's fabulous, with reclining seats, food brought to your seat, and gorgeous surroundings. Okay, the reclining seats aren't 20's based, but they sure are nice!! lol

Again, the term 'walk in' is perfectly understood by all locals to be the downtown theater. "Hey, did you hear that they are redoing the walk in?" (redoing is southern for refurbishing) "Have you been to the walk in since they redid it?" "The walk in sure is nice!" ect. Also used for the 'drive in'.

You can read more about this theater's history, as well as our drive in, by Googling "Jesup Strand" or "Jesup Drive in". Enjoy!

Saturday, June 2, 2018

A rainy, MONTH, in Georgia

So, it's been a month and I have yet to get pics from vaca up. Again, I'm having issues with getting them from my phone to my email. Once it get that straightened out, I'll post them.

As to the title of this post, well, that's what's happening in my neck of the woods. Rain. Nearly every day, for over a month. It's thundering again as I type, and more rain is expected. Of course, we need it, no doubt about that. But it means I have my lamp on by 4 pm, if not earlier, even with the windows in our open floor plan home. Kind of depressing.

Nonetheless, I endure, lol. Started my day with maple raisin oatmeal, and Prince of Wales (Twinings) tea. Delicious! A stronger flavor than English breakfast, but not overpowering. Again, I'd use 'smooth' to describe it. One Splenda only, no milk. Sweetens up nicely.

We are working on long division, and two digit (and more) multiplication in homeschool. Good thing I give us 365 days, b/c we need it. Drake just gets bogged down by all the steps, a bit intimidated. He's getting there, though. Fractions will probably happen the last month or 6 weeks of school, to prep for 5th grade. Yeah, I know, not as fast as public school. It works for us, and I figure he'll be caught up by the time graduation comes, lol. Seriously, so much pressure! Crazy.

Anyway, gotta dash, thunder is getting worse. Stay dry, chickies , and have a cup for me!

Thursday, May 3, 2018

Home again, home again, jiggety-jig....

Well, we got in early Sunday morning around 4am. After 16 hours of driving!
It took 14 to get there, but we came back by way of Gatlinburg and the mountains, so it took
longer. We also had a stop while in the mountains that made it all worthwhile, but more on
that in a later post.

There was a lot of walking. A LOT. It also rained two days in a row, so our doings were cut short
a bit, but we fit in most of what we planned to do. We had a great time!

It has taken me this long to feel up to writing a post, as I've been 'lame' from all the going, lol.
Jet-lag, or driving-lag, also. :)

I'll update in a day or so with pics and details.
Suffice it to say, we love our Old Kentucky Home away from home!