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Tuesday, June 24, 2014

Cam Can't Catch a Break...or maybe he can:)

We took Cam in for his annual neurology appointment.  We updated the neurologist of all the latest things going on with Cam.  Luckily he is going to do some good research and get in contact with Cam's geneticist and they are going to evaluate him for an official Elhers-Danlos Syndrome.  The neuro went to a conference just 2 weeks ago all about EDS.

The other awesome thing was that as we were talking over his PVNH diagnosis in connection to EDS he pulled up the PVNH website.  This is awesome because I know the lady that has made it her life work to get this info to doctors around the world.  She started the website and it is her daughter that is the face of PVNH.  Her daughter Ella, died at just 7 months from complications of PVNH.  This woman is a good friend and she works constantly for our kids!  I love her!  Thanks Yo!

The bad news....

Cam had ear tubes put in last January.  His right ear has had some drainage the last couple of days.  He hasn't had any pain and doesn't have a temp, but I asked the neuro to check it for me just in case.  His poor ear is completely perforated.  As in there is literally no ear drum left, so he has no hearing out of that ear right now.  He got us an emergency appt. with our ENT for tomorrow to discuss surgery options for fixing it.  We lose our insurance on big deal;).   I am so thankful I had this neuro appt. scheduled so we found it!!

I feel so bad for Cam.  I want to go to the doctor one time and have it be an "everything looks great, keep up the good work" kind of appt.  Poor kid can't catch a break.  I am praying for a quick fix and full recovery for his ear.  I don't know what to expect, so any of my special needs mamas out there any info or advice is totally welcome!

I will update once we know what is going on with him.  He is still happy, sweet, and the cutest little 5 year old I know.  His birthday is next week and we are planning a Beyblade party so he is excited about that.  His Kindergarten program is tonight and he can't stop talking about he is distracted and happy.

Thanks for the love and support!

Blowing giant bubbles at pack meeting last week:)

*EDIT!!!  Cam was seen by the ENT the next day.  His ear was extremely infected but the ear drum and tube were in place and working properly.  He was put on some ear drops.  Cam does not have to have surgery on his ear!  This is fantastic news, we were so relieved and see the blessings and miracles in our lives.

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