Home sweet home!

We've been back in Oregon for 5 days now.  Can't believe how fast the time has gone!  What an incredible trip it was!!  I'm already missing Cincinnati.  It really is a nice city!  And Cincinnati Children's Hospital...wow.  The doctors I saw were so helpful and knowledgeable.  I thank God continually for these doctors who are exploring even further what's causing all my symptoms.  When they told that they think I have a mitochondrial disease, all I experienced...was...relief.  I know it's a pretty scary diagnosis (feel free to google it...www.umdf.org is a great site :) and I don't know what's ahead at all, but finally having some answers after waiting more than 7 months makes me glad!

Since Monday, my right eyelid has been starting to droop just like my left. :(  Don't like how they feel!  I guess going to Ohio was a little too much for my eye muscles. haha ;)

Yesterday, I started physical therapy again.  I have to try and walk up and down our long flight of stairs once a day, using both feet and not just my right.  My left leg shakes terribly!  These past few days, I've also been researching inpatient rehab programs (not necessarily "pain rehabilitation" but more of a program that can address all my symptoms).  We're looking for one closer to home, and I found one at Seattle Children's Hospital which is the sixth best children's hospital in the nation! :)  I emailed them, and the attending physician who directs the rehab program wants to have a phone conversation with me next week!

Here are some pictures of our visit to the National Underground Railroad Freedom Center.  It is a really nice memorial!

tobacco

Ku Klux Klan robe

a surgeon's tools

this amazing bridge is across from the museum!

Up next: pictures of our visit to the Creation Museum! :D

Last full day in Cincy, Ohio! : Day 7

*Sneak Peek*

 

Can you guess where we went today? :)  It was such an incredible experience that we'll never forget!

But.....I'm only gonna show one picture for today! ;)  You'll just have to check back next week for more pictures! :D

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I had another great Genetics appointment this morning!  Dr. S gave lots of good recommendations/tips on how to better manage Ehlers-Danlos Syndrome.  She also had us meet a Cincinnati Children's expert on mitochondrial disorders.  He is the dr. who will be looking at my mtDNA to check for deletions, duplications, etc.  All the doctors I saw this past week had a conference together to talk about my symptoms and all the possible diagnoses.  They said I'm a very complicated case. :\  They're still considering Mito, but they also said all my symptoms could be a form of Dysautonomia..  So Dr. S gave the names of a couple of experts on this particular condition who practice in Oregon. :)  I have lots of appointments coming my way when I get home!

 

 

Me and my genetic counselor, Krysten. :)  She is so so sweet and a big help!



 

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We had our last dinner at the Ronald McDonald House this evening!  Sob!  I'm gonna miss all the wonderful families we've come to know!  I'm especially going to miss this super cute 2-year-old who's waiting for a bone marrow transplant.  He always has a huge smile and such chubby cheeks!  Ronald McDonald came to see all the families in the dining area. :)  He's so good with kids!  I was able to get one last picture with him.

 

He gave me a sticker. :D

 

A Visit to the Cincinnati Zoo! : Day 6

Lots of pictures in here of the zoo!  I'll let them tell the story. :)

We learned that giraffes clean their tongues by licking posts. :)

There were huge patches of gorgeous tulips all over the zoo!! :)

look at that color!

Fact: that furry, tall penguin to the right is actually the baby of the group!!

So hilarious to see!

A zookeeper training these flamingoes. :)

This sign made me laugh!  I can just imagine this happening! ;)

Sooo pretty.

One of my favorite pictures. :)

This monkey wanted to get his picture taken by Dad. :)  He even came up and put his hand on the window!

Watching huge manatees!

Flamingoes!

Tomorrow morning is my last appointment at Cincinnati Children's!!  It's hard to believe this week is pretty much over!  Can't wait to hear my Genetics dr. tell us the treatment plan. :)  After that, we're planning on going to the Creation Museum by Answers in Genesis!  It's only about 45 minutes away from Cincinnati.

On Saturday, we head back to home sweet home! :)