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Ben Sorby

A way to keep our family and friends up to date on Ben's medical journey for a diagnosis.

Latest journal entry

Crossing Our Fingers!

Well, hello and welcome back!  This is now my 3rd attempt at updating Ben's blog (I never said I was great with technology!).  I typed up an update about a month ago and somehow managed to not only delete the entire new journal entry, but also the previous one (on diet changes) as well.  Then I spent all of nap time yesterday updating it again and the website had an issue and deleted it.  :-)  Soooooo....if you got an email a month ago saying there was a new entry and nothing new was here, that's why!  So here we go again....

We've had a busy few months here.  If you read my last post, before I accidentally deleted it, back in November we did some food sensitivity testing for Ben and a long list came back.  We immediately implemented the diet change and were very strict about it.  We did 3 whole months and did not notice a change in Ben at all.  It actually went downhill.  Ben started refusing to eat at many meals and was going several meals (sometimes days) without eating anything.  He began to lose weight, his eyes were starting to look sunken and he was sickly.  Not only that, but his behavior did not improve in the least.  The whole family was getting stressed and agitated with the food issues and Ben's outbursts, that 2 weeks ago, Justin and I decided to scrap it.  He is still strictly gluten free and we are limiting dairy as much as possible, but he's back to eating and enjoying meals again.  Hallelujah!  We were having to spoon feed him like a baby to try and get him to eat something. Letting him go hungry was not an option anymore.  Alas, things are better!

Around the same time as the sensitivity testing, Ben had an appointment with his neurologist.  Since we still haven't been able to do the whole exome sequencing, he highly suggested getting Ben evaluated for speech and psych at the Fraser Clinic (http://www.fraser.org/) in Minneapolis.  This would hopefully give us some strategies to help with his behaviors.  I put off making the appointments for awhile, because I was tired of always having to run here and there and, quite frankly, I didn't really think it would do us any good.  Finally, just after the new year, I decided to call, because I'd been struggling and so had Ben and I figured an eval couldn't hurt.  During the intake call (that lasted about 40 mins) it was decided that Ben should also have an OT and autism eval.  He went in for the OT eval in early February.  It was determined (which we already knew) that he has an ongoing need for OT therapy.  She did say that she was amazed with how well he sticks with things.  He's very determined to "get it".  She said that many kids his age (and older) just quit when things get hard, but Ben kept trying.  This was encouraging for me.  He's a fighter! :-) She suggested that he have OT (other than what he gets at school) 2x per week, but they should be able to back it off to once a week fairly quickly.  They were able to find us therapy closer to home, so we wouldn't have to keep driving to Minneapolis, but it's still an hour away.  So, we are waiting until all the other evals are done, before we jump into anything.  The extra therapy, outside of school, would also help with some of the sensory issues he has.  There are more and more showing up every day. Ben will go in for his pysch/autism eval at the end of this month.  It's 3 hours long, so I hope everything will go well.  I'm hoping it is long enough that he will act typical for him, because so often he acts different at therapy, school, out and about etc, than he does at home.  He will have his speech eval in early May and then we will decide what to do with therapy.  

As I said before, whole exome sequencing (WES) has not been an option for us yet, because our insurance will not cover it (and they have been very difficult to work with) and we cannot afford the hefty price out of pocket. During my frustration around the holidays, when I made the call to Fraser, I also made a call to Ben's geneticist's office.  I inquired about what else could be done to make this work, since everyone has been in agreement that this is the next step...and only other step at this point.  His genetic counselor let me know that she would resubmit a pre-authorization to our insurance and LOAD it with paperwork this time.  She also let me know about a company offering to do WES for families.  We are currently in the approval process for that and keeping our fingers crossed.  We've been told Ben is an excellent candidate. (YAY!)

So, in between doctors visits, lots and lots of phone calls, filling out paperwork, and rechecking to make sure everything is being completed, we had an amazing blessing come upon us.  A mom in one of my special needs groups on Facebook, mentioned a non-profit organization called I Run 4 Michael (http://www.whoirun4.com/).  Runners/athletes are matched with special needs buddies.  They dedicate runs and workouts to their buddies and amazing friendships are formed.  Normally I would have ignored something like this, but when I heard that runners were waiting 8 months to a year and the waiting list was in the thousands, I figured "what the heck".  I'm so glad I went with my gut!  Ben has an AMAZING runner.  Anytime a video or picture is posted by him (through the group Facebook site), I read it to or watch it with Ben and he gets so excited.  We usually watch videos over and over and over again :-), and it makes him so happy.  I sometimes get teary eyed reading posts or just thinking about what these amazing individuals do for all special needs kids and especially Ben.  :-)

So, once again, I don't have too much new to update with.  I am anxiously awaiting his autism eval at the end of the month and praying that he gets approved for the WES testing.  

Thank you all for your continued prayers!

Sara