Bentley is fine

Again, not a ton to update you on, but I’ll try and make it worth your click. 

Judah made it back to Birmingham, as most of you probably have discovered by now.  However, she decided to make it a shorter stay than we all prayed.  Lindsay and I had the pleasure of meeting her the day after she arrived.  It was such a blessing to be able to see her.  I spent my entire drive back to Dothan tonight praying for her and her courageous parents.  My heart truly breaks for the pain Eric and Katie are experiencing.  Their faith and dependence on God has shown through in every update they’ve shared.  As I was about to post this Eric shared that God called home another Angel.  What can you do but say “Hallelujah!” -https://www.facebook.com/groups/463345633752146/

I love how life’s problems can always be put into perspective rather quickly.  Bentley’s problems pale in comparison.  Bentley is basically the model of health.  I really don’t have much to say about her right now.  In summary, her muscles are still weak, but constantly getting stronger.  Lindsay almost has her holding up her head.  She still can’t see.  She still can’t hear.  And, surprise surprise, genetics is running more tests.  That about covers it.  Everything I had written prior to learning about Judah is below.  

Bentley’s learning that she run’s the show.  If she doesn’t want to eat, Lindsay can’t make her.  The funny part is, we can’t really tell her she has to eat.  All we can do is hold the bottle in her mouth, or shove spoonful’s of food in it.  She decides whether she is actually going to swallow.  Today, she didn’t want to eat.  I’m sure Lindsay wants to say “ok, but when your stomach is growling at 2am, don’t start crying for me!”  But she cant.  Bentley is learning “No,” but we haven’t figured out how to communicate “because I said so!”  Anyone have any good hand signals for that one?  We say “no” a lot now due to Bentley’s constant desire to rub her eyes.  Lindsay learned that we need to break her of this habit because it can cause damage to the soft tissue around them.  At the National Federation for the Blind conference Lindsay attended a few weeks ago, with her dad, she met someone who actually had an eye removed because of the damage this caused.  So we tell B “no” by tapping her wrist twice with two fingers.  She’s catching on, although she will go right back to it seconds later.  Is something wrong with me because I just imagined my daughter walking around Auburn on game day with orange and blue artificial eyes that had the AU logo as the pupil?  That would really freak out some Bammers!  Someone with an artificial eye out there needs to do that.  

Medically, genetics is running more tests.  The ETC mitochondrial tests or whatever it was they were running came back inconclusive.  So they are running more.  Another month or two before results are back.  The Otoscope tests came back normal.  So far every test has come back normal (or inconclusive).  This is good, it just means we don’t know why she is blind and deaf.  I’m ok with not knowing if it means we’ve ruled out muscular dystrophy and some other bad stuff.  The docs have been careful to inform us that just because things come back normal doesn’t mean she still doesn’t have something.  It just means that of the known genetic markers, there are no abnormalities.  So she could still have some muscle-something going on, they just don’t know where to look for everything that causes everything yet.  If that makes any sense.  

I left you all hanging with how we would do at kindermusic.  Well, it was a good time for B.  She told me she had a blast.  

We played hooky from therapy the next week.  We made a trip up to North Carolina to see the NC grandparents and stop by to see Jarod and Elena.  Bentley did great on the drive up.  My grandparents, aunt and uncle, and all the neighbors spoiled her rotten.  She was held or played with constantly.  I could hardly get a kiss in.  I loved seeing everyone, but it was no secret they only cared about seeing Bentley.  Our timing couldn’t have been better.  It happened to be the week Jarod and Elena’s baby was due.  With perfect timing, Elena gave birth to little William Joseph Bryant the day we were going to see them  The first family member to spend time with Willy Jo was Bentley.   Many great pictures were taken.  How often do you get this opportunity given the distance between us?  It was great to be able to hold my little nephew the day he was born.   Before we left, we had a great laugh by letting Elena hold Bentley has her family arrived to the hospital a few hours after us.  Elena’s mom was shocked at how big Will was.  HAHAHAHA it wasn’t Will, it was Bentley!  Get it?  Maybe you had to be there.  Congrats Bro!

As soon as we arrived back in Bham, Lindsay turned around and left for Orlando for almost a week.  She went to a conference for the National Foundation for the Blind.  There were 1500 blind people at this conference….and Lindsay and her dad.  She said there were white canes swinging everywhere.  She also realized the strong possibility of us having another black lab one day, as a guide dog!  Lindsay and her dad learned so much.  I’ll make her write a post about it.  I couldn’t do it justice.  All I can say is hearing about each day was so encouraging.  Bentley now has a little cane for when she learns to walk.  We also have a cane so we can help teach her how to use it.  We learned more about tools for helping write braille and utilizing technology for blind people.  Really cool stuff.  I’ll have to get a picture of Bentley’s little cane.  It’s so cute.  

While Lindsay was gone, I smothered Bentley with hugs and kisses knowing that once I started working again, I wouldn’t be able to kiss her constantly.  I even let her sleep with me some.  I just had to.  

Physically, Bentley’s head and neck are starting to get stronger.  She’s holding her head up more and more.  That is something we are really working on.  This is a very slow process but we are getting more consistent with “tummy time” multiple times per day.  We are also switching to holding her upright and using the Baby Bjorn more than a stroller, to force her into that upright position.  I hope it works.  She still plays well with her toys (what a statement, she is a baby).  She hasn’t mastered rolling yet, but coming close.  Bentley’s upper body strength is coming very slow.  She still isn’t pushing up at all with her arms as she lays on her tummy.  We’re trying a lot of things to help with this, but I think it’s just going to be a slower process than we would like.  I’ve been holding her arms up making her hold her own bottle.  She hasn’t figured out what she’s doing yet, but maybe one day she’ll hold her own bottle like everybody else’s kid.