Monday, August 7, 2017

What's up for August - Life Lately


I've been trying to write this post for four days and now we're already a week into August.  Truth be told, there's been a lot on my mind with respect to Anna and the past four days have been mentally draining.  I sat down to write but I just could not focus.  We've been living with spina bifida for ten years and most days, it's just a minor little blip on the radar.  But there are days when the weight of it becomes so heavy.  I worry about her health, her safety, her mindset.  I worry that I'm making the wrong decisions.

The girls and I drove down to the cottage a day and a half ahead of Rich this weekend.  There are two things you cannot forget when traveling with Anna:  her prescription meds and cath kits.  I forgot cath kits.  It's not as if I had forgotten to put them in the van or forgot to grab them as I walked by the upstairs hall closet where they're stored.  I straight up forgot.  We were about a third of the way into our hour and a half trip when I realized my error.  When we leave the cottage, Rich and I have been counting the cath kits in her bedroom closet so we know how many to bring for the next visit.  We don't want to end up with an overabundance there.  I could remember there being 8 left from two weeks ago but could not, for the life of me, remember how many were there when we had left the previous weekend.  I knew there had to be some though and kept driving.  I quickly calculated that we needed five cath kits to get by and hopefully none of them would be bent (yes, additional stress.)  My parents were scheduled to visit us the next morning and I thought they could just swing by our house on their way down and pick up what I forgot.  We arrived at the cottage and there were only three kits.  And my parents were at their beach house so my plan wasn't going to work.

Rich ended up driving halfway and meeting me just over the bridge that night.  I felt really bad that he had to do so.

Right now, we're waiting for test results to see if there's any bacteria in Anna's urine.  She's not presenting symptoms of a UTI but as we learned a few years ago, there could be bacteria present without any symptoms.  I've seen an increase in white sediment these past few weeks and I can't tell if it's bacteria related or something else.  It's often a struggle to keep her hydrated.  You sometimes have to force her to drink water.  I don't want to go into too much detail but after several bad caths, I reached out to the urologist's nurse.      

A note on the bent cath kits, which are unusable.  Our cath kit supplier, who we were so happy with, sold their business to a larger company last year.  It has been one headache after the other dealing with the new supplier.  At first, they sent us the same kits we had been receiving but then those were replaced with essentially the same kit but it must be less expensive for them because the quality is meh.  The mat in these newer kits shreds and falls apart when it's wet which is the most ridiculous thing in the world because it's supposed to get wet.  We had one shipment with a slew of bent cath kits.  The first person Rich spoke with in trying to get those replaced told him that we may have to go back to the manufacturer ourselves.  Think again.  We eventually got those replaced and we haven't seen as many as we had been.  Just had another bent one this morning though.

Under Rich's health insurance, we need to pay up to the deductible for the cath kits.  Thank goodness Rich was paying attention to what we had been charged by the supplier because they overcharged us.  By about $400.  And now every month when he orders cath kits, he needs to explain to them why we don't have to pay.  They can't seem to keep their records straight with the health insurance company.  This requires Rich to sit on hold and sometimes speak with more than one representative before they straighten it out.  They won't send you kits if they think you owe them money so he's forced to do this.

Needless to say, we have a list of other suppliers and we will be moving our needs elsewhere.

So, that's a little of what's being going on "behind the scenes." Let's move to fun life stuff now.
With school not back in session until after Labor Day, we still have quite a bit of summer left here.  We've been spending three to four days a week at the cottage before returning home for dance and appointments.  It looks like we'll be able to stay on the Cape for a longer block of time before school starts.

Last day of school photo, which I don't think I ever shared here.

I can't believe how dark their hair was before the summer sun brought out the blonde.


Speaking of photos I have yet to share . . .








The girls, Grammy and I will be driving out to Michigan again (soon!) for a visit with family.  For the past year, I've promised we would add Kentucky to our vacation but as I began to plan, it turned into a super long vacation.  I couldn't find that much time without an appointment or commitment.

Initially, this is what I thought we would do:

Day 1 - Drive to MI
Day 2 - Finish drive to MI (about half a day)
Day 3 - MI
Day 4 - MI
Day 5 - MI
Day 6 - Drive to KY
Day 7 - KY
Day 8 - KY
Day 9 - KY
Day 10 - Begin drive home
Day 11 - Arrive home

So, yeah, I could have shaved off a day in MI and a day in KY but I know the kids would have been grumpy spending more days on the road than at an actual location.  The other option was to have my uncle meet us in Kentucky with Mamaw but Mamaw doesn't want to travel there during the summer months.  It's just too hot for her.  Our first obligation is to visit with family in MI, so that's what we're doing.  I was also trying to plan this so that my niece could come with us again.  I've been bouncing around dates and ideas with Grammy for months now.  Of course, I didn't know how the competition dance would affect our schedules until June.  I basically just booked the hotels for this.  Talk about last minute.  My brother was able to take time off from work and he'll be driving out with his three kids.  It promises to be a fun cousin vacation!

The girls are all asking me when I'm going to start dinner.  I'll end with all my recent non-Cape sunset photos.










Bree at Clarity Defined said...

Loving all these pictures!!

Sending lots of well wishes for Anna and good health. Navigating health insurance and care can be so frustrating and hard - I'm glad you have some other suppliers you can switch to and hopefully it'll go more smoothly with them.

Anonymous said...

Sorry to hear about all the healthcare annoyances. These pictures are STUNNING.