Thursday, September 22, 2016

Moseying~The Medical (Benjamin, Jael, Gabe, and Timothy)

I feel like I'm moseying back onto the blog, casually.  We have had "happenings" constantly, but I feel the sun on my skin and relaxed in my heart....and I'm moseying (is that even really a word?).

Our lives our full and (it seems daily) getting fuller, so pull up a chair...grab a cup of tea...and get comfortable.

I think I'm going to just update you all gradually by subject.  There's just a lot of "goings on" that a mosey is about the only pace I can do right now.

I'm gradually (though not going to do it all at once) going to update everyone on...Medical Stuff, Big Family News, Every Day Doings, Adoption, Home School and.....

Feel free to comment or email me what you'd like to know... or YOUR prayer requests.

Mosey is about the only speed I go right now, so....

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THE MEDICAL (Benjamin, Jael, Gabe, and Timothy)

I'm not sure we've ever had so much going on medically.  There's just flat out a lot.  I'm not sure where to dig in.  My thought is just to start from the oldest child (having to work through the medical maze) to the youngest child.

Benjamin/13 years old~Ben has always had issues gaining weight.  We get weight on him and it's a fight to keep it.  We went to a pediatric GI doctor pretty quick upon bringing Benjamin home, armed with the knowledge that many other special needs parents had shared with us.  We knew Ben had Celiac Disease, but (to us) that didn't explain everything.  Though this doctor was super sweet, she dismissed some things that we really saw were probably a need, because (though a fight) he was gaining weight.

This year at Ben's physical with doctor's guidance, we started in a new direction.  Ben can eat and eat and eat...and still fights to keep on weight.  Our WONDERFUL pediatrician gets that something else is behind this...she suggested that there was at this years appointment.  She gave us the name of a new pediatric GI doctor.

This Gastroenterologist saw exactly what we had felt in our gut for years.  He said Ben may always struggle...but there IS something else going on.  He immediately assigned the most fun test...the poop test.  (Yup...I have had so many years of scooping poop for tests, that I'm claiming expert status.  I am a poop scooping Samari.)

The doctor's office called...just today.  One of the MANY tests that were run showed (wait for it) a malabsorbtion issue.  He will need a endoscopy (and biopsy) and a colonoscopy.  This was definitely news, but not 100% unexpected.


We are actually glad, not because Ben will have to go through this, but because maybe after years of trying to find answers...we may be able to.  Thank you Lord!!!!  Talking to other special needs parents, fighting for years of diagnoses is sadly very normal.  At least we are on the right track now.

(Next up with Ben...geneticist and endocrinologist.)

Jael/8 years old-  Jael has a successfully working pair of prosthesis with knees.  It took awhile to get it working with her new suspension system.  A valve that is supposed to let out air was doing it when it wasn't supposed to.  Now that it's successful we will be getting her running legs done with the new suspension system.  It no longer has a belt that wraps around her waist, but is a system that uses a form of suction to secure the legs to her body.

We stumbled on this in our Children's Hospital. 
Gabe spotted it an actually yelled (he was so excited).

We are now in the process of getting a self-propelled wheelchair for Jael.  It's made to fit her and is supposed to last for five years.  For long distances or extremely hot days, she needs to have the option.  She also needs to be able to be independent and not rely on a stroller meant for much younger.  The insurance approved it and will take care of 90% (we have a great insurance) and are applying for grants to cover the rest.  We have a lead on 3 to 4 places we can seek a grant.

Gabriel/7 years old- Gabriel had allergy testing recently and has always struggled with allergies.  We were surprised by a couple results and are altering his diet some at this point.  We are now testing for thyroid issues.  We have a test next week to insure the first results we received were correct (high numbers).  The first lab sometimes tests a little high with just this test (from what we understand).


Timothy/4 years old- With Timothy there has been a lot of hurry up and wait.  Here's where we are now.

Both the specialty doctor at Shiners (in PA) and our doctor here are willing to do surgery on his hips and put them into socket.

Side note:  As you may remember, the doctor in PA is one of the world's leading experts in Arthrogryposis (Timothy's diagnoses).  People wait forever to see him.

The biggest question now is Timothy's feet.  The doctors here tried casting with almost no results.  They had many doctors examine him and discuss the best avenue and still, at this point, are leaning toward amputation.  The other options they don't feel are feasible for him.

The cool part is that our local hospital doctors have such respect the doctor in PA that they don't want to do ANY surgery on Timothy's feet and hips until he is seen by this PA doctor.  They want his thoughts.



So, here's where we are at.  The hospital in PA has now called and given us a date...actually three different trips (the last two may be cancelled...or not...depending on the doctor's thoughts on this first trip).  We have a couple of months, but in the meantime we are applying for medical flights, trying to make reservations at the Ronald McDonald house, and trying to figure out how to do afford a rent a car while there.  PLEASE let me know if you have any ideas when it comes to renting a car (and if you know of any medical grant places for things such as this).  The Ronald McDonald house is not right next to the hospital.

We also have an appointment next week where we may get a surgery date for Timothy's wrist.


Anna taught Timothy to do this.  Uh Oh....

As for Thomas and I, we have our medicals hopefully tomorrow (for the adoption). We appreciate prayers that blood work and examinations go beyond good.

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Well, that's my moseying.  Just as I had no clue how to begin this,  I have no clue how to end this either (chuckle).  My moseying brain doesn't work that way right now.

I hope you have all been blessed.  I know many are struggling with big Big BIG stuff right now.  I will admit my heart hurting for many.  It's been a bit of a sad day.  Though I ask for prayers for above, please pray for hope for several of my friends.  There's rough stuff going on.

See you all soon...hopefully (chuckle).  My hope is to mosey back on here and cover the next subject.

Now go be silly.  It helps.

Our mouths were filled with laughter,
    our tongues with songs of joy.
Then it was said among the nations,
    “The Lord has done great things for them.”
The Lord has done great things for us,
    and we are filled with joy.  

                   Psalm 126:2-3


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In the joy of following our Heavenly Father, we sometimes choose to proceed with a whisper, a verse, or a downright shove...no matter how we follow Him, the momentum that follows is like nothing we've ever experienced before.

Join the momentum...it is a beautiful place to be. It's not always easy, but then the best things never are.

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