So, as I sit here-I need to remind myself that I cannot, cannot, cannot put the cart before the horse. We were at the pediatric opthomalogist's office last week for follow up on Keelin's lazy eyes and this rockstar doctor went through Keelin's history again trying to pinpoint an underlying cause for Keelin's obviously related neurological issues. The hypotonia, the Apraxia of Speech, the lazy eyes.......To make a long story short, she suspects there may be a metabolic disorder along the lines of L-carnitine deficiency. I thought this was funny becasue when we did all the genetic testing with Keelin at 15 months, Keelin's bloodwork came back deficient for L-carnitine both times. It was attributed to the GERD, though. Keelin's doctor has a call into her geneticist to explore this possibility further as she presents with other symptoms of this deficiency.
When I came home from that appointment, of course I consulted Dr. Google. Bad idea. L-carn deficiency is manageable, not curable and puts her at risk for all kinds of awful things (stroke, heart problems, sudden death.......ummm yeah-that's what you want to hear). I felt a very familiar sense of doom that I had not felt in months (which is a long time around here). That doom came rushing back to me and I was instantly reminded of the last two years that we have spent in hospitals, specialists offices, operating rooms, getting brain MRI's and wondering what's next with our girl.
I have been thinking alot about the return of that familiar dread and reminding myself again that I have to live in the moment and not in the "what if". It is counterproductive in life and especially in Keelin's case. I could make myself CRAZY!
What also sits with me lately is that it was so nice to be just her MOTHER. Not her medical detective. Things seemed to be settling down on the medical front and the anxiousness replaced by a feeling of acceptance. But new answers or potential answers bring new concerns. Her life so far has been measured procedure to procedure. Kris and I reference the passing of time in her life by what specialist she was seeing, what procedure she was having. I suppose it happens this way for some other folks, too. It seems both natural and unnatural at the same time. My son's life has not been measured this way.
So for now, we wait and I put the potential pitfalls in the back of my mind. They are only potentials-not absolutes. I won't let an errant mind trample my sense of well being. It isn't worth it. One foot in front of the other, dilligent steps and an observant eye for what is good in this world. There is a LOT of good in this world, this life- my daughter's smile being pretty far up the list. No carts, no horses.......only patience.
OK-so I couldn't sleep last night regardless of how hard I tried. Agh. I knew I had to cut and fire a 16" by 16" platter for Congregation Beth Shalom today. I donated last year and the piece I made sold for 425.00-all of it going to build their new temple. I scaled back the wildness of the piece this year, hoping it will go with more decor.
A pretty card from a new Etsian......you can purchase this card at http://thecardbasket.etsy.com All the items are handmade. And if you like the snowflake, let me know and I will make you one in glass!
Oh My-the kids are getting big! Jared went with his friend Daniel to scour the neighborhood. Keelin went with me while Kris manned the posts at the house.
So, I was at the outdoor mall near our house and one of the homefurnishing stores had these FABULOUS wall frames.....I saw them and immediately knew what I was going to do with them. Well almost immediately---
I wrote this on my hand on the plane -a return trip from Napa and the CAS workshop...........the meaning? The folks at CASANA who run this website, http://apraxia-kids.org are here to help. To lend a hand of support to children and parents that face this challenging diagnosis. This was a fabulous workshop up in Napa-and I literally just got home, but wanted to reprt that I received some excellent information from this workshop. I will put a higlight post together later-but in the meantime, suffice it to say I learned MUCH about my daughter's condition and what we can expect over the next couple of years. We have so much to be hopeful about!
How is that for your obscure Peter Gabriel reference? We just got back from our 6 day vacation in San Diego. We had a wonderful time! Jared and I rented wet suits and rode our boogie boards on the beach every day. We also went to the San Diego Zoo-which was a blast, and checked out a couple of museums at Balboa Park. I leave Thursday for the Apraxia of Speech conference. And I have been making GLASS! Yes, remember glass? I have a couple of shows coming up and my inventory is sad, but I have been getting my "mojo" back, which makes me happy.
Well-we had some fun today! Keelin went to a "pool party"! Her little friend, Caiya turned 2 today and they had a blast playing outside and running around. I love this picture of her-it has a very "action-y" feel to it.
Well-the Brain MRI verdict is in. Keeling has enlarged anterior cortical areas and fissures consistent with a benignly large head. No water on the brain, no tumor, no cyst. We are so thankful. A;; nrain structures are normal.
