and kids

and kids

Saturday, November 22, 2014

Preparing for Cincinnati

We were hoping for Vanderbilt because it was closer, but we were hoping for Cincinnati Children's Hospital because it is so much better.  We got appointments at both in January, then Vanderbilt moved us up to December 11th.  Then Cincinnati called on Wednesday and asked if we could "come tomorrow".  They were kind enough to understand my no and get us in on Monday instead.

So, we are headed to Cincinnati!!  My direction-challenged self wants to say that Cincinnati is soooo far away, but I am told it is a little over five hours away.  That is doable.

From late Wednesday when the appointment was made until this weekend before we leave, I am at peace.  I am excited for a REAL doctor to look at our case (our pediatrician is awesome but is the first to admit this is way out of his league and the neuro we saw here was less than stellar) and I see a spark in Daegan.  He is ready to move toward a goal.  Up until this point, he has asked me each morning - after we appealed the January apt - "Did Cincinnati call to change our appointment yet?"

He is ready.

There are so many pieces to this puzzle that the Lord has laid out perfectly.   I don't know why this amazes me - His plan is always perfect!

I was nervous about Cincinnati vs Vanderbilt because of our insurance, but I was told today (still feel like I'll believe it when I see it) that since we have Blue Cross Blue Shield PPO, that our plan is covered at this hospital and it isn't considered out-of-network.  Still going to be paying a lot but not as much as I thought it would be if it was out-of-network.

The doctor we were going to see in January is THE Ataxia Neuro at the Cincinnati Children's Hospital, but since we got moved sooner, we are going to see a general neuro just to get our foot in the door.  When I looked our doctor up online, one of his side specialties "just happens to be" ataxia.  I know The Lord is leading us.

The week we are going is indeed Thanksgiving, and that is a bummer, but it is a great week for me not to worry about the kids.  It stresses me more to worry about them getting their home work done for someone else and to be shuttled back and forth to school and soccer, etc.  But none of that is going on this week.  Full day of school on Monday and then Tuesday is Grandparents (half) day.  Philip and Sarah and kids volunteered to stay at our house to have a big slumber party, which is less stress on my kids and also takes care of the "what do we do with Omar" question.

Another expense while we are gone is the hotel stay.  When I called the hospital to find out what hotels were near the hospital center we are going to be at, they offered to make our reservation for us, which was 50% off the regular price for patients.

Jason and I have also recently become agitated about some tests that were not run on Daegan (long story), but in hindsight I feel it is best.  I think if those tests were run and a diagnosis was made then we would be stuck with the neuro here to treat.  I am glad to go to Cincinnati to get a proper diagnosis that I feel confident in and have a doctor there that we will continue to use for treatment if necessary.  Even in our frustration, I feel this was a protection from God, pushing us toward Cincinnati.

We have also been extremely thankful for our CCS family.  Throughout the past two months they have been patient with Daegan's schoolwork, expressed prayers and love to me in the halls, sent me messages often of "I left a casserole in the teacher's lounge for you - Enjoy!" many, many times.  I couldn't ask for better support.  It has been incredible and has relieved a lot of stress from me.

So, we look toward Cincinnati!!!  I hate traveling away from my babies (yes, they are all my babies even as teenagers) but I love medical.  I typically take it head on!  Jason hates medical and hates traveling, but he loves me and I need him there.  And he is a good different perspective for the doctors when they ask questions.  Daegan is ready!  And he is excited about staying in a hotel!  With an indoor swimming pool!  And he understands he isn't getting a magic pill to make him better and he understands he will probably endure some yucky tests, but he is still very excited!!

I've got my theories about Daegan that I will not share here.  I've got my list of questions and my list of tests I'm already planning to ask for/about if they are not suggested.  I could get no where with the neuro here, but I am praying the neuro in Cincinnati will be smart and attentive.  I feel at peace we are heading to an incredible hospital and my prayer is we can get some answers.

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