I frankly balked. I'm feeling a little "journeyed out" with both kids and felt like what we were doing was working. But many people who saw this specialist raved about her and how helpful she was. Then my husband jumped on the train so we went.
I refused to make this trip about another doctor. Since Marvin had spring break we decided to have some much needed fun. I called up the aquarium and asked what they would recommend. The lady gushed about the joy of being up close to a 26 ton whale shark. I told her that having my daughter eaten before the appointment may not be the best thing. Luckily she caught on I was kidding and said they only feed them children on Fridays so we were good (gotta love someone who can dish it back to me!). She then said that we could pet a penguin. I was good with something that was under the ton weight limit.
The only shark I can handle and be OK with!
She had to bring Seahorsie! He got to meet his family that day.
The whale sharks. They were huge!
They didn't let us take pictures of the penguin experience. We met a very nice penguin, Cary Lynn got to pet her. She loved it! The penguin wasn't too sure about Cary Lynn. Or any of the rest of us. They had to bribe her with tons of fish to get her hang with us.
We also took a trip to the American Girl Doll Store. I called ahead and Dolores gave us the red carpet treatment. Cynthia Arvella (Cary's doll), got her hair done and her ears pierced. Cary Lynn got a crown, a card in Braille that said Welcome, and got to hit and play with every noise making toy in the store.
Cynthia and hairdresser
She was so excited to be there! She squealed and laughed the whole time!
Then we went to the doctor. Dr. Kendall's a super sub-specialist who has 25 years of working in Metabolic, Mitochondrial, and Inherited Disorders. She spent a lot of time on the paperwork we sent in prior to the visit and we were there a good chunk of the afternoon. It was a lot of information to digest and take in. Here's a summary of what we learned.
-Cary Lynn has a lot going on and it's almost hard to untangle one system from the other (which we knew but it was different to see all the charts, diagrams, and pictures laid out and have everything broken down.)
-We need to have specific mitochondrial protocol in place to keep her feeling and doing her best. Their are times of day that are better for her than others. She needs extra time to rest and we may have to cut back on some things. I'm OK with this and to an extent we already try and do this.
-Surgery, sedation, and recovery protocols need to be in place. I have lots of paperwork for her medical team.
-We need to start on something called a mito cocktail. No, nothing fun for adults. This is the name given to a variety of vitamins and supplements which are commonly used by adults and children who have been diagnosed with mitochondrial disease. Mito can be responsive to these and they can possibly help make her feel a bit better.
-Her brain. Well it's still disappearing. This one tends to be a stumper because it's not normal. It could be Mito. It could also be several other conditions. None of which are great and we can't fix any of them. Dr. Kendall said she couldn't give us a timeline on this. If she could I would have been super amazed but I wasn't expecting her to have the answer on it.
-We have orders for a spinal tap. This can give us information on possible brain issues. However because Cary Lynn is complex her team is a little skittish about this. They have sent their concerns to Kendall and asked if there was something a little less invasive that could be tried first.
Overall I learned a lot. And I'm still processing. I wish I could say that we went down, got a magic pill and she's going to regrow her brain, but I can't. We will just keep moving forward and doing our best. We also won't stop pushing Cary Lynn to be her best. Her diagnoses don't define her anymore than her hair bows do (though her hair bows are awesome!). Her spirit, personality and fire are what make her who she is. And I wouldn't have it any other way.
