Oh how long this journey has been and still we are in the beginning…
We made the trip to OHSU and now the insurance waiting game begins. The genetics team feels that there is a huge possibility that she “could” have something rare, something besides just the brain anomaly, the autism diagnosis, the heart defect, the mild cerebral palsy, the eye issues, the hot mess that my bundle of amazing is.. there may be one word to sum her up besides… spectacular!
Yes I want to know if there is some syndrome that she has, I know in ways it could help us with this medical challenge we face… but at the same time it’s almost like a small ripple in the water compared to the wave of this life we live… we have been told so much and been to so many doctors what else are they going to say that could change what we have here already. I want each moment with her to be the best and give her the best life and like I’ve said plenty of times I want to live forever to do that… lol said no Mom ever right…
So beyond the appointment and now the blood tests that will need to be ordered and then the panel of genetics doctors that will need to study those tests and compare and consult with one another.. we had a fun time while up there.
Just like I had mentioned we went to the Zoo, saw lots of animals. My husbands favorite were the Otters.. Mine were the Tigers and Elephants I can never pick one… and Miss McKinley really liked the underwater area.. anything with water for that awesome little gal. She did end up falling asleep half way through but I think she enjoyed the sights.
We had some of the best ice cream that I have ever experienced at Salt’n’Straw in Portland and holy crap it was worth the wait. My sister and I left the other two and had some us time and of course we marched towards ice cream, i mean why not right lol???
We had our night away from the hustle and bustle of PDX and headed to the coast.. went to Astoria, Oregon . It was pretty cool, cute old little town full of historical buildings. We did try to check out the Goonies house however the sign in front lead us away, you can no longer see the home up close. Basically those awesome people out there who do not respect others property ruined that one for all the others, thank you so much! ugh! But who cares right we had fun and saw some other really neat things. The place we stayed in was a suite with a view right onto the water, it was pretty.
The old Fort Stevens Military base was neat and we were able to check that out while we were in Astoria. They say it’s haunted but I didn’t see anything fishy while we explored it… McKinley wasn’t too happy though while we were there so that part of the fun didn’t last too long.. poor kid was in a car a lot so I do not blame her one bit.
Of course no matter where we go we always find ourselves in a Fred Meyer/Kroger. We need food/groceries or just need a place to stretch our feet that is easier for our little miss, either way there we were while in that town 4 times… lol.. the joys of the trip were endless and I’m so thankful that my sister came with us. She gave my husband and I some adult time, we went to dinner one night since she is old enough to watch McKinley for a little bit here and there. She is almost 16 and they get along so well. Best aunt ever!
To top of our trip we went through the Ghost Town of Golden, Oregon … now that was creepy.. I’m not sure if I liked that one bit… it was recently shown on an episode of ghost hunters and I thought hey that is right there let’s go for it. That was spooky not going to lie.
I know this journey is long for us and like I said we are still in the beginning but if we try our best to stay positive and cry when needed I think we can do this… Christmas is coming up and we got her a tablet… part of me is not sure if this is the best choice or not but hey she sure knows and understands the phone and there is some educational purpose there too… and a good warranty.
She did manage to damage one of her lenses on her glasses however so that is ordered and on the way, also she started climbing a lot … I know this is normal but goodness slow down baby girl… all the bar stools have been removed from our house.
I will keep you all posted on the adventures we continue to face and our medical journey.. wish us luck and keep her in your happy thoughts!!
Below are some of the pictures from our adventures, and her magnificent Halloween costume are her favorite character Minnie Mouse ( she is with her buddy her grandpa in the pic)