January 2013

Ben had his appointment at the Houston Children's Hospital in the genetics dept.  It went really well!  The doctor we saw was so great.  He is a specialist in neurofibromatosis (NF1) and his gut thinks that Ben does not have it.  He wants to do blood work that will confirm officially, but as of Jan 1st, our insurance will not cover that specific code.  They are going to court to resolve this and expect it to be resolved in a few months.  As an alternative, the doctor is referring us to an eye doctor in Houston to look for NF1 characteristics that show up in the eyes.  Ben's muscles, and leg muscles specifically, do not have the typical weakness that is present in people with NF1.  He also doesn't have the typical spots in the armpit and groin area.  The doctor didn't think that Ben's spots have the classic look of NF1, but admits it could be it.  Ben's spots didn't respond under ultraviolet light like a typical NF1 response.  He also isn't having seizures or learning disabilities, which are common among kids with NF1.  So, next step, see the eye doctor.  He is also referring us to a pediatric dermatologist in Houston.  He doesn't have any idea what Ben's spots may be, but hopes a dermatologist will be able to figure it out.  Depending on the results at the eye doctor/dermatologist, we may or may not need blood work at all.  Both appointments are set for the same day in April, which is helpful because it’s a 2 hour drive from our home.

We celebrated Ben being done with the doctor visit with a trip to the Houston Zoo.  Ben was a crack up at the zoo.  He was on a mission the whole time; to track down the next animal he was desperate to see.  Once he found the desired animal, he had no need to linger.  He was ready to move on.  He seemed especially excited to find the Komodo dragon.  He kept covering his eyes while we were walking around, because he wanted to be surprised when we finally found the Komodo dragon.  So cute!  I had to keep telling him he had to be able to see to walk and to look for the Komodo dragon.  We also got to hear a huge tiger making incredibly loud sounds.  I would almost say it was moaning.  It wasn't quite a roar or a growl.  It was amazing!  I've never heard a big cat in person like that and it was such an impressively loud and unforgettable sound.  We also saw a giraffe fight!  So fascinating!  It was a very dramatic and slow fight.  They would swing their necks around, to gain momentum, and then bash into the other's neck with their horns.  Who knew?  One also kept using his back legs to try to pull the other's back legs out.  They just kept taking blows at each other.  It was intense and looked so painful.  We were mesmerized.

We enjoyed some Red Robin burgers and a quick stop at Ikea on our way home.   It’s fun to go to familiar places that we don’t have in our town.

God is good and has kept me in His peace despite some big emotional, physical, and financial stresses this month.   I won’t go into too many details, but I’m very thankful for our God.  I saw one doctor who was unsuccessful with a procedure for me.  It was very painful and took awhile to recover from.  She said I needed surgery and would need anesthesia.  I have no insurance and didn’t know how God was going to work this all out.  Additionally, I felt awkward and uncomfortable with this doctor.  While I was waiting for my referral, some other potentially scary stuff was happening with my body.   There was lots of praying and processing happening.  Peace is something that takes a lot of internal work to maintain, and I’ve been working hard.  Waiting for the next “unknown” step is another stress I had to work through to maintain my peace.  I finally got my referral call, but I had concerns because it was not for a surgeon and it was for an office where I would have to pay full price for everything. Thankfully, we got it worked out and I got an appointment at a clinic, where I get a big price break, with their nurse practitioner and a surgeon who comes in on Fridays.  The surgeon was able to do the procedure without surgery and with much less pain than the previous doctor’s attempt!  The nurse practitioner was so kind and caring.  She held my hands and talked me through the pain and discomfort!  What a different experience than last time!  Praise the Lord that we were able to have all the medical work for me and Ben paid in full, despite me having no insurance.  God totally worked it out!  I’m so relieved at being at the end of the medical procedures for myself, the unknowns are known, the finances are covered, and there is a big likelihood that Ben does not have NF1.  Whew!

One weekend we scoured pawn shops all day so Jon could make use of his Christmas "banjo fund" gift that the kids and I gave him for Christmas.  I love that my sweet kids pitched in their money to bless their Daddy.  We ended up finding a Goodtime Deering banjo at a fantastic price.  It has a great sound.  I love hearing Jon play it.  The kids also got pretty interested in wanting to learn to play.  They lost their interest a week later, but it was cute watching them practice the tunes Jon taught them while it lasted.

I’ve had some really sweet times with the kids this month while we’re schooling.  I’m so appreciative of the life I have.  I’m intensely appreciative of the depth of relationship I get to build with my kids by being there with them so much more than if I had made other choices with their schooling.  I’m deeply glad I get so much more time with them while they are young.  I love snuggling in the recliner, drinking my morning cup o' joe, and teaching Ben about fractions.  I love getting to enjoy the warmer winter days bundled up on the porch doing grammar, spelling, and phonics with Ben.  I love sitting on a sun warmed trampoline reading the latest novel out loud to the kids.  Homeschooling has some pretty awesome perks :)

One weekend we had a lovely day trip at Huntsville State Park with the Rusch family.  We went on a couple hikes and picnicked overlooking a beautiful lake.  It's amazing how good a turkey sandwich tastes after a hike.  The winter weather felt like spring, crisp and perfect.  The landscape was very woodsy and the waters were at times swampy and marshy and other times more of a clear river.  We kept our eyes peeled for the alligators that inhabit the area, but we never saw one. We later got to see and pet a baby alligator at the ranger station.  That was especially fun for the kids.  On one of our hikes Jon and Caleb were having a pine cone throwing war. As they were racing through the woods pelting each other with pine cones, Jon tripped on a big tree root. He went down so hard it literally broke his bones, his rib bones!  He’s continuing on with life, despite his broken ribs, and improving each day.

 

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