Tuesday, March 8, 2016

More Adventures in Jacksonville

For our field trip last week, I chose Tree Hill Nature Center.  It was a nice place with several hiking trails and various animals scattered about.  Amelia and Matthew got their "goat fix" after missing theirs so much, and we met a snake that seemed more like a puppy.  Yes, you read that correctly.  I've never seen a snake want attention as much as that one did.

It was a fun dose of afternoon nature/education.

Amelia wants granddaddy to build this "playground" for their goats.
We're pretty sure this alligator understands how Brad feels about being confined to a hospital room for two weeks, although I'm betting this guy has been looking at these four wooden walls for much longer.
There were some big turtles in this room - as well as the friendly snake.  I should have took a picture of him!
And lest we forget the whole reason for being in Jacksonville......caught Brad with his mask on his forehead.  He has had to wear this if he ventures out into the hallway or if they come in and clean his room - and everyone has loved his bright orange shirt.  No chance of him getting lost! (And there's GOOD news - looks like Brad may be leaving the hospital tomorrow!!)
Madison got to come see us for a few days.  We enjoyed her being here!

Wednesday, March 2, 2016


When thinking ahead about what future seasons in our lives hold, I never dreamed I'd be packing up and moving to Florida for two months.

When the amazing doctors at Mayo confirmed my husband's diagnosis of POEMS syndrome, his treatment plan included a few months of chemo and steroids to get his body close to remission followed by a stem cell transplant.  The transplant could be done at Mayo or we could try to have it done locally at Emory in Atlanta.

At that point, I couldn't even begin to entertain the idea of having it done in Jacksonville.  Such a procedure requires being in the hospital for approximately two weeks followed by close followup after discharge of around two to four weeks' duration.  I couldn't imagine how we could make THAT work.

But after multiple failed attempts to get in with Emory (until a date that was really just too late), I started to realize that Mayo was the place and that once again, God was directing our footsteps in such a direction.

When it seemed like an impossibility to me, God once again showed me how he makes the impossible possible.

He's great at that.  Not sure why I keep forgetting.

It would have been nice to have it done locally, but I'm definitely seeing benefits of being here in Jacksonville....

*We are 10 minutes from the hospital.  Emory would have been at least an hour away - maybe more depending on traffic.  This makes it easy to make multiple visits throughout the day - giving us and Brad a break.
*When I say us, I'm referring to Brad's mom and I.  She is here with us, and it would have been difficult to do this without her here.  Matthew and Amelia are not allowed to see Brad (no one 12 or younger is allowed on the floor), so it's good to have someone here who can help with childcare.  (Cari is here, too, but she likes to visit and daily childcare for her would have been quite wearing I'm sure.)
*Had we stayed in Atlanta, I most likely would have tried to continue on with everyone's usual activities (for instance, going ahead and letting Matthew play spring baseball).  Since we came here, we put a stop to everything.  That has been a blessing.  We're able to focus on Brad and his care and are not trying to fit him into our schedule.
*It's Florida, and we're here in February.  Need I say more?

What a blessing that we homeschool, too.  We can pack up our books and school anywhere!  Although most days we're just hitting the "high spots," at least we're getting some things accomplished.  I'm also trying to fit in some field trips while we're here.  There is so much history in Florida, especially in the St. Augustine area, which is just down the road from where we are staying.

And also what a blessing that my job allows me to work anywhere!  Anywhere I can plug in my computer and have internet access, I'm good to go.  And I've truly been blessed with amazing bosses that are so understanding of all that's going on.  I truly love what I do!

God is always in the details of our lives, and I am so thankful that He's blessed me with the ability to not miss those details.  I don't always see them in the beginning, but at the end, they are always in plain sight.

Proverbs 16:9 ~ The heart of man plans his way, but the LORD establishes his steps.

Wednesday, December 30, 2015

2015 - That's a Wrap!

2015.....Wow, what a year it's been!


I think we traveled more in 2015 than any other year previously. ========>

Brad surprised Cari with a trip to California for her 16th birthday ~~

We had a wonderful family trip to Colorado ~~

And I've made five trips to Florida this year.  Once with my friend, Megan, and her kiddos and then four times to the Mayo Clinic in Jacksonville where THANKFULLY Brad received a firm diagnosis of POEMS syndrome that is being treated quite successfully at the moment! 

We visited an alligator farm in St. Augustine on one trip.

And we always try to visit the beach while we're there.

And we're finishing the year with a trip to Texas.  A highlight was driving to Waco, Texas, and visiting Magnolia Market (even if the trip involved an actual trip on the sidewalk that sent me flying and landing on my face.  Still not sure how I managed to do that....)

PawPaw is turning 70 in a month, so we surprised him and celebrated a little early.

We welcomed some new family members this year. ============>

Lillie, the Great Pyrenees.  She's great.  and huge.......
and six goats, although we're down to five as one got sick and didn't make it.  We had a close call with Fred, but thanks to an awesome vet, prayer and yogurt, he's doing great.

Matthew enjoyed two more seasons (spring/fall) of baseball.....

And he and Amelia both started taking horseback riding lessons.  They both love it!

I got to see some of my favorite Contemporary Christian singers in concert this year......

Big Daddy Weave......along with Chris Tomlin, Casting Crowns, and Newsboys!

Also in 2015, Cari got her license!

All in all, it's been a great year.  The biggest highlight of this year is the fact that I have had soooo many answered prayers, and for that, I am MOST thankful!  God is good ~ no doubt about that!


Thursday, September 10, 2015

POEMS Syndrome

I'm rather behind on the updating and I have so much to say!  Our home school started back up the first week of August, so there hasn't been a lot of time for blogging.  I was also waiting on more internet data so I could upload some pictures of our trip in July to Colorado.....

It was a fun summer that went by super fast - as always, but I also think we're wishing our days away waiting on our home construction to begin.  I think we may be seeing the reason behind the holdups, but that's another story.

I'm not sure what to update first, so I'll just go with the "another story" for now.

Two years ago, during my mom's sickness, Brad was prompted to go have a physical.  The physical included lab work that showed he had thick blood, also known as polycythemia, and low B-12.  At this point, he was referred to a hematologist who did extensive testing, up to and including a bone marrow biopsy.  In the end, the doctor determined "he just has thick blood" and placed him on a daily aspirin.

Soon after, he started developing numbness in his feet and lots of swelling in his legs and ankles.

As a child, he had taken half of a baby aspirin and almost died, so the daily aspirin got the blame for the above symptoms.

He was sent to a neurologist who after more testing, up to and including a spinal tap, determined he had CIDP.  He was placed on prednisone for a few months with no improvement.  He was then given a five-day cycle of IVIG with some improvement, so he has continued monthly cycles of this up to this time.

After that initial cycle, he pretty much kept on an even keel.  But then we added weight loss to the mix, and blood clots, and hypothyroidism.....

He did a little research and discovered that Johns Hopkins in Baltimore has neurologists there that specialize in treating this disease.  He just wasn't getting better, so I encouraged him to make the trip. Three weeks ago, he went up there for his appointment and was very impressed.  They spent a lot of time with him and told him they would be in contact soon.

In the meantime, a friend of mine saw a post on Facebook about him going to Baltimore and the reason why he was going.  She contacted me quickly saying that she wanted to talk to me about some information.

I did and learned that she has a friend who has been in ICU at Emory for the past 10 weeks.  She had similar symptoms as Brad and had been wrongly diagnosed to the point that she was no longer able to walk when it was finally discovered what she had, which was POEMS syndrome.  She strongly encouraged me to research this, which I did as soon as I could get to my computer.  I was overwhelmed.  There was no way he didn't have this.

We talked about it and decided we would discuss it with his neurologist at his appointment that week - actually last Friday.  It was as if we turned a light bulb on for him.  He agreed that it was definitely worth looking into.  He called Brad's hematologist that very morning, and the hematologist called Brad rather quickly, setting up an appointment for the following Friday.

It was a relief to feel we were all on the same page.

Then yesterday, he got the call he had been waiting on from Johns Hopkins.  Apparently the doctor he saw there was suspicious of POEMS and actually did blood work for it but didn't mention it - I guess not wanting Brad to worry needlessly.  He told him that he did indeed believe he had early stages of POEMS and that he needed to see a hematologist for treatment as soon as possible.

We are so thankful he made that trip.  Now we can go to the hematologist tomorrow seeking treatment instead of a diagnosis.  It's a little scary, but I've read a lot about this disease over the past couple of weeks.  There doesn't seem to be a complete cure, but it does sound like the symptoms can be treated successfully a majority of the time.

We are also thankful for friends who care enough to speak up when they have helpful information.  Otherwise, when we got that call yesterday, we may have been thrown into a panic, but thankfully we were prepared.

In the research, we have learned that POEMS is often misdiagnosed as CIDP, so if a search for CIDP or POEMS brought you to my blog and you are having symptoms that are not getting better with CIDP treatment, do a little research and see if you might fall into that category.  It is important that POEMS be treated sooner than later.  Unfortunately, most people are at the point of not being able to walk before receiving the diagnosis because POEMS is such a rare blood disorder that it is often overlooked.  Hopefully as more comes to light about this disease, that will soon not be the case and more people will receive treatment early on before things get out of hand.

The IVIG Brad has received over the past several months is what we think has kept him on the "even keel" I mentioned earlier.  Without that, I truly believe he would not be walking right now.  This is something that he will continue as part of his treatment plan - that much we know - but we are looking forward to getting the rest of the story tomorrow.

In the midst of all this, we've seen God's hand working and protecting through it all.  For that, I am most thankful.

I'm also thankful for UPS and the great insurance provided by that company.  Also, the exercise involved in his job has been a source of therapy.  It seems that those with sedentary-type jobs or lifestyles seem to succumb to the disease at a faster rate.  During the past two years, being active has been a great source of help.

In a nutshell, we both feel relieved to have a diagnosis, and tomorrow can't get here fast enough.

Tuesday, August 4, 2015

House Update

So......what happened in July in regards to our home construction?


That about sums it up!

Thursday, July 2, 2015

House Update

I had hoped and prayed that June would bring progress to our home construction, and though there are no visible (picture worthy) signs of building yet, indeed there was progress!  

**We got our survey!!

**We got our home plans!!

**We met with our builder, and he's currently pricing everything out!!

We were met with a slight glitch in getting the property put in our name just yet (which is something the bank will definitely require), but we're hoping that everything will come together at the right moment and construction can begin.

In the meanwhile, I search Pinterest. :>)

This delay has been good in that it has given me time to really think what direction (decoratively speaking) I want our new home to go in. 

I'm pretty settled on a mixture of farmhouse/craftsman.  I don't want anything that is "trendy" but more like "timeless."  I'm looking for character and adding lots of old in with the new (I can't get enough of the show Fixer Upper, and that is often what they do, and I LOVE it!).

I've already found an old screen door that I plan to start refinishing soon in hopes that it can be used as a laundry room door.  My dad also has some old heavy wood doors that were taken out of an old home that I'm hoping we can incorporate somewhere.

We've decided to go with a metal roof - which is something I never thought about considering, but after hearing our builder give his recommendation and looking over some photos and eyeing every house with a metal roof that I see as I'm traveling down the road (LOL!), it just seems like part of the perfect blend for the exterior I have in mind.

We're also exploring the idea of concrete countertops.  They seem like a good option for a solid surface yet are a little easier on the budget......

That's all I can think of for the moment ~ now let's see where July takes us!

Thursday, June 11, 2015

Experimenting with Community Supported Agriculture

A few weeks ago, I saw an Instagram post made by a friend who was displaying her huge weekly share from her recently joined food co-op.  And it got me thinking.

I've looked into these co-ops before but never tried one out.  I decided it was time.

For several days, I researched all the local co-ops and CSAs (community supported agriculture), and I found a CSA that was not too complicated to join, had a super easy web site for placing orders, had some open spots available, and was nearby (actually turned out to be closer than I thought....)

In case you haven't notice, I'm one for experiments. 

So far, I'm enjoying this one - it's fun to open up the box and see what's inside each week, but in the end, I have to decipher if I'm saving money or not, which is the ultimate goal.

I joined for four weeks' worth of deliveries.  Along with the weekly fruits and vegetables, I ordered a month's supply of meat.  Technically, it won't last a month, but it will go a long way.  This included 20 pounds of an assortment of meats --- whole chicken, beef roast, pork chops, bacon, Italian sausage, beef filets, New York strips, wild caught Georgia shrimp, ground beef....

I also receive a weekly delivery of raw cow milk.

Each week in my fruits/veggies box, I have received at least one or two items that I would typically not buy, so that brings a little variety to the table.  :>)

The first week, I received a vegetable that I'd never heard of ----> Kohlrabi. 
So I did a little Google search to find out what to do with it.  I used the recipe here to create the shredded kohlrabi patties.  It didn't taste like anything I had tried before.  It wasn't bad, but I don't see it becoming my favorite vegetable anytime soon.

In this weeks box, I received peaches and blackberries, broccoli, zucchini squash, cucumber, kale, parsley, lettuce, and beets.  The only way I've ever cooked beets was last Christmas when I used them to color my red velvet cake.  Not sure I want to go to that much trouble here in June, so I'm going to have to Google once again to figure out what to do with them.

Last week's surprise or unusual inclusions were shiitake mushrooms and a rutabaga.  Mushrooms are pretty versatile but don't think I've ever cooked a rutabaga.  As part of last night's supper, I cubed up the rutabaga along with a turnip from another week's box (they looked alike so I figured that was okay), covered and boiled them in salty water, and then mashed them up together with added butter and some bacon left over from breakfast.  Not too bad.

I do like the variety of vegetables I'm receiving, and I've yet to use my entire box of produce in a week before the next one arrives. 

If you're wondering about costs, it was right around $400 for the month for the meat, fruits, veggies, and milk.  Our food budget is around $150/160 a week, so that leaves around $50 to pick up extra needs during the week. 

Another plus to this adventure is it turns out the manager of this CSA lives about a mile from me, so she just drops off my weekly order on my front porch on her way home.  Now that's hard to beat.

Next week will be week number four, and I'll have to make a decision on whether to continue or not.  With my dad's garden starting to come in, local produce stands having such good prices and healthy-looking items, and not to mention the fact that I recently tried out Aldi, I may have to take the experiment in a different direction.