Friday, May 19, 2017

Moving Day is in 30 Days!!

Things are falling into place for Cleveland...  we move in 30 days!!  We are in the process of gathering records and scheduling appointments at Cleveland Clinic.  Michael is currently scheduled with an esophageal GI specialist that we hope will be able to get him off of the feeding tube.  He's also scheduled with cardiology, endocrinology, and a primary care doctor.  We are still waiting to hear back from neuro...  they are reviewing his records to schedule him with the most appropriate doctor.

As far as Michael goes...  it's been up and down.  The story of his life.  About 2 weeks ago Michael started acting funny and then woke up the next day with a very strange... but familiar headache.  We immediately recognized he was dealing with high intracranial pressure...  pressure in the brain.  His neurologist had us come in the next day for a spinal tap and it confirmed what our suspicions were.  For most of us, our ICP is 13-17.  It is not uncommon for Michael to be closer to 20 and even the low 20s.  His pressure was 31!!!  Dr. Sahgal drained 21 units of fluid off of Michael's brain and by the next day he was feeling MUCH better.

His pressure being that high leads us to many questions.  Why?  What's the syrinx doing in his spine?  Does he have new scar tissue in the brain that's causing it?  We talked with the neurologist and decided not to pursue any more MRIs here, but to wait until we move in 5 weeks.  Why you may ask?  Because it doesn't matter what they find on the MRIs...  we wouldn't treat it until we got moved anyway.  We did, however, agree to see the neuro-ophthalmologist to be sure there was no damage to the optic nerve.  Thankfully, there isn't a permanent damage...  only some mild swelling that is improving.  

So now we focus on our move in 30 days.  I'm flying to Cleveland next week for interviews, to see our house, and to talk to an insurance broker to get health insurance arranged for Paige and I.  We started this venture 6 months ago knowing we would need about $5500 set aside to get moved.  That number is now down to about $1500...  so we are WAY closer, but not there yet and starting to get nervous.   Especially not having a job in place yet!  We are incredibly grateful for the Visa gift cards and food gift cards we have received to help with the 4 day trip.  

That leads me to prayer requests....

1)  Michael's ICP will stay stable until we get moved
2)  I will find the right job that will offer me the benefits and flexibility I need
3)  That the financial end will come together so that we don't have to stress about GETTING to Cleveland!
4)  That the review team at Cleveland Clinic will partner Michael up with the PERFECT neurologist to help him improve!

As always, much love to all!  


If you feel led to help, you can donate through the One Day at a Time, One Prayer at a Time  site.  Any funds received will be used to help Michael and his family with the travel costs and medical expenses for all appointments, copays, deductibles, other out of pocket medical expenses, day to day living expenses associated with chronic illness and disease.  If you prefer to send a personal check or gift card, please click the "Contact the Organizer" link on the site for an address.

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