A little bit behind....

Oh goodness.  We have been so behind at the Leupp household!  I received a phone call from a dear friend yesterday, who reminded me I still hadn't updated the blog!  So sorry!

Some excuses on why I am behind: the kids are transferring schools, Nelson's mom went to Hawaii to be with his grandmother who is ill, it is final time (lots of grading), and major decisions needed to be made.  Sadly I have been focused on these things, and haven't been good about communication news (and one more, my computer is on its last leg, and rarely can I get on the internet long enough to do anything!).  So I hope that you forgive my tardiness.....

Where to begin?
UTAH.
The Shriners Hospital in Utah is simply amazing.  The people and facility were unbelievable.   We met with a doc there who wanted us to come to Utah every week, and it just isn't doable right now-but we are leaving that door open.  We didn't learn anything new at the appointment, which lasted about 20 minutes, and was just a consulting appointment.  The doctor we saw was big on testing (I recently found out that this is procedure, because it is a research based medical facility,  they run a similar set of tests on every child).  One of the tests was an MRI.  We have received many questions regarding our choice to not do the MRI.  Here are some reasons:
When we met with the neurologist who diagnosed Mimi, he told us that an MRI was not required to diagnose CP, especially since her case is extremely mild.  He didn't want to put her through it.  Another reason is that the Shriners doc also agreed that the MRI is not accurate, but would show other neurological diseases (again, procedure).  Finally, CP is not progressive, and her symptoms will only reflect growth, not worsen over time.  The question many people have is why wouldn't we test her to have a definitive diagnosis?  That is because her diagnosis is definitive.  And MRI test is actually not a definitive test in non-infant children, which is why our insurance ( and most others) will not pay to have an MRI done to diagnose Cerebral Palsy, because it is not considered necessary. CP is a broad term that denotes a plethora of musculoskelatalneurological disorders.  Unfortunately there is no "classic" CP, or list of required symptoms, but can take on the appearance of mild to severe physical and mental disorders.
Also, the Shriners doctor did wonder if Mimi possibly had other neurological disorders.  She wanted to eliminate Muscular Dystrophy and Muscular Sclerosis.  After much consideration between Nelson and I, and asking different friends and doctors, we decided that MRI testing to eliminate other disorders wasn't good for Mimi at this time.  We don't want Mimi's life to be one big doctors appointment.
We loved the Shriners hospital, but the travel and disruption was just too much for the last bit of the school year.  We may revisit that option over the summer, especially since we may lose some of Mimi's medical coverage.

Insurance:
UGH.  We found out last week the our insurance will only allow Mimi to have Physical Therapy 5 more times this year.  They will "reload" her therapies next year if they believe it is necessary.  This is a major bummer, but we know there are other options out there for coverage.  We are going to get her on the Medicaid waiver, but it is a year long wait-list.  Fortunately we have such great friends and family, who have researched alternative medical help.  I will be exploring those options in the next few weeks.

Right now she is doing great mentally.  She knows she has CP, but is beginning to recognize that it doesn't make her weird.
The biggest difficulty we are facing during this time is Miles.  He is really struggling, and much of it has to do with Mimi, but there are some other factors like fear, grief, and worry that are weighing down his sensitive little heart.  He is such an amazing kid, and change impacts him.

Well, I think that brings you all up to speed.  We are transferring schools in the fall, and I think a fresh start will be good for them both. I will keep you posted!  Thanks again for being there!
PS.  Again, I know I am super behind, but Music for Mimi "Thank Yous" are coming!