Wednesday, December 6, 2017


It's been a long while since the last post but I knew it was time to start up again.

Q and I went down to Seattle Children's Hospital again on Monday in another attempt to figure out what the heck is going on. This time we were seeing a genetic doctor. So far the last year we have seen: urology, nephrology, neurology, allergy, ophthalmology, auditory, psychiatry, and GI. I walked in hoping for answers but expecting to once again walk away disappointed. Most of the specialist couldn't explain what's been going on or offer any insight. A couple had passed us on to genetics. Now, HERE we genetics. After a six month wait for our appointment we were not disappointed.

I gave the genetic counselor as complete a family history as I had and waited for them to tell me it was nothing and they couldn't help. The doctor came in and knew exactly what was going on. FINALLY! He said Q has something called Hypermobility EDS (Ehlers-Danlos Syndrome) which accounts for his hypotonia (low muscle tone), autonomic instability (dizziness, headaches, auras, pain episodes, etc), gastro-intestinal problems and anxiety. Everything that we thought was RND (reflex neurovascular dystrophy) is actually EDS. Add in the trauma our family has experienced the last two years and boom - you have Q's current state of health.

Eight years we have been trying to figure out what is wrong with our boy and we finally have a solid diagnosis. I feel so much lighter now. It feels so good to have a legitimate explanation for what has been going on. It's NOT all in our heads, and Q isn't making this stuff up.

He doesn't need any limitations aside from no dead lifting or cross fit types of exercise. And no yanking on his extremities. Mainly he needs to empower his body and learn what his limitations are and honor them. Overdoing himself is a bad idea. The doctor recommended; biofeedback (luckily Q is already on the wait list for that), the pain clinic (also already on the 1 year wait list), acupuncture (HAHAHAHA! Yeah right! My 7 year old who's terrified of needles?), hydrotherapy, warm heat packs, continuing with GI, Occupational and physical therapy. Lucky for us, we have already been on the right track for his treatment, we just didn't know what was wrong. I'm unsure if this diagnosis will inform his practitioners on their treatment, but it sure is great to have answers!

Crazy Day never posted back in 2012

Last week Q, E and I were finishing up an appointment at the osteopath in Seattle when I started seeing 'snow.' Not real snow, but the 'no signal on the tv' type of snow. It was pretty distracting when I was trying to write a check for the appointment and have a discussion with the receptionist. I sat down on the couch and let Q play for a while as I waited to see if it would go away. As I sat there I discovered that it wasn't actually black and white static but ripples of color in my field of vision. It was on the right side in both eyes, in the exact same pattern! That told me that it wasn't on or in my eyes themselves but in my brain! This was going to be pretty annoying if it was here to stay.

I decided that I could drive home because I could see around it. About that time I started getting a headache. As I got the kids in the car I called one of my doctors to inquire if this might be a side effect of the new medication I was on. About this time my eyes cleared and were fine. The nurse was quite alarmed, told me to get off the road and then determined that I needed to go straight to the walk-in clinic. I was quite unhappy with this as I had both of my children with me and this was the FIRST time I had ventured out with both of them on my own. I didn't want to add another stop (long one, and in my opinion unnecessary) to our morning. She talked me into it anyway, but I still called Ian to see if he had an opinion. Unbeknownst to me, my symptoms got immediate attention and I didn't have to wait to see someone. Due to the fact that I have a blood clotting condition, currently being treated by blood thinners, the likelihood of something happening in my brain was very likely. Plus I was right, the visual phenomenon was a nerve/brain thing rather than within the eye. The amazingly kind and thorough Dr was great with my tired Q (who insisted on getting his reflexes checked as well as Momma's). He explained to me that I was going to get an MRI that day to see what was going on.

Great! I'm thinking. I have a 2 year old and a newborn an hour away from home with no one to come take care of them. Luckily the MRI got scheduled 3 hours out so I had time to rush home and find a sitter.

Funny thing.  Actually getting to lay down was such a relief when I went in for the test I just sat there enjoying the rest.

Thanksgiving 2011

We went up to Mom and Dad Walker's for a few days of Thanksgiving. Sadly I did not take any pictures...and can't even find my camera now, so here's all the pictures Katie took

Ian's brothers Nowell and Nate were there visiting with their families so it was like a half family reunion. On the day before we went out visiting the local parks with Nate and Katie while the rest went to Vancouver for the day. Q was deliriously happy to be playing with other boys (except for those times when he was cranky), and got lots of exercise. Ian and I did too because on top of the hiking on our own we had to cart around a 30 lb almost 2 year old after about an hour.

Saturday, June 23, 2012

Father's Day

A week or two ago a sister at church stopped me in the parking lot to tell me how touched she had been during the closing song of Sacrament meeting.  She looked up and saw Ian walking and cradling E and tenderly singing the closing song to her.  It made her day.

Sunday, June 10, 2012


My friend Juanita told me that a little trampoline was the best purchase she had made for her kids.  I happened to find one last week for a great price and Q has already gained loads of coordination!  And he's loving bouncing!  He can bounce on both feet or one, already!  He loves jumping onto it from the couch.

Of course I didn't pull the camera out until he was getting tired (again!) but I did get some cute footage.  My favorite part is "Good job, Momma!  Good job!"  How adorable is that?  And with a thumbs up!


At three months old our little E has DOUBLED her birthweight!  Wow.  She ain't starving, eh?

She's also laughing and giggling.  Here's a clip of playing with Daddy.

It is definite now that E is allergic to strawberries.  When I eat them she is screaming, writhing and not sleeping or eating for days.  Bummer.  I'm noticing that my diet is seriously hampered without any dairy as well.

Ian and I have been a bit mystified by Q's refusal to pray with us.  We've had about 10 Family Home Evening lessons on what prayer is, what it looks like, why we pray and what it looks like. Ian went up to his parents house last weekend and discovered that Q will pray if everyone is in a circle holding hands!  Oh happy day!  I was getting worried about my sweet boy.

I discovered this last week that playing primary songs in the car calms my kids down for long drives.  That's lovely since they HATE their carseats!

Thursday, May 10, 2012

Emmeline's Photo Shoot

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Desiree worked her magic again.  I could sit and stare at these pictures all day long.

Emmeline in her blessing gown.