A diagnosis! FINALLY

   Well, today was Erik's first appointment with the OT and PT.  He was his usual charming, loud self.  Proclaiming when they approached his feet "No thank you! and Almost done?" When the physical therapist was done manipulating his feet he looked up at him and said "I need my stroller, I go back home now".  The PT - whose name was Tom (and who Erik called Uncle Tom - he does have an Uncle Tom, whom he really likes), gave him a mat and some toys and Erik showed all his crawling and standing skills.
After an hour of tests and observations we finally have a diagnosis...and here, off his medical charts it is. Mild or benign hypotonia.
Mild or benign hypotonia is often diagnosed by physical and occupational therapists through a series of exercises designed to assess developmental progress, or observation of physical interactions. Since a hypotonic child has difficulty deciphering his spatial location, he may have some recognizable coping mechanisms, such as locking the knees while attempting to walk. A common sign of low-tone infants is a tendency to observe the physical activity of those around them for a long time before attempting to imitate, due to frustration over early failures. Developmental delay can indicate hypotonia.

After talking with him for another hour this is basically a very mild form of floppy baby syndrome.  Usually pretty common with Down's Syndrome children.  There is no cure, there is no treatment except to allow him to progress at his own rate in really really supportive shoes which will train him to put his feet flat.

     He said this was not a cognitive delay, nor a nervous system delay like muscular dystrophy or CP - but rather a muscle sensation delay. 
    So all those early signs when he wouldn't put his legs down as a baby and would never put weight on his legs were the very first indicators of this.  Because most babies start putting weight on their legs, almost immediately they have all those months to build up the muscles in their thighs and especially their hips which down the road help them to walk.  Because Erik refused to put any weight on his legs until he was almost 14 months old, he's 14 months behind in building the muscles he needs to eventually walk.
      This made a lot of sense to me, he has to build the foundation muscles before the walking muscles can even do their job, babies need to stand up on parents laps for 6 months before they even have the capability to push up and crawl, no wonder he didn't crawl until he was 16 months old!
     Tom the PT said he sees children with mild cases like this all the time, and they eventually catch up - although sometimes it takes a LONG time, and we can't push them or they will skip steps (in building muscle) and be weaker later on.  It totally reminds me of the parents I see in my preschool who want me to push their child into academics and writing before they've mastered the skill of playing and interacting with others.  Playing helps them build the foundation that everything else stands up on. With play you learn to problem solve, you can't figure out your math homework if you don't have the problem solving skills.  I spend my days defending play and begging parents not to push their children into academics and organized sports before they've worked out the groundwork to build those things on.  This is the same, only physically.  We can't force him to walk if the hips muscles aren't developed enough.  They only develop by allowing him to cruise up and down the furniture over and over until his legs tell him they are ready to take a step.
       He also informed me that he would do fine playing sports for fun as a teenager but would likely never be a star athlete.  However after an hour with him answering questions with questions i.e Tom: Erik can you stand up please? Erik: Or crawl? Or sit? Or Dance?.  Tom: Erik I need to look at your ankles please. Erik: Or a book, or my Mommy or check your e-mail?  He thought a career as a lawyer or politician would be right up Erik's ally.  When he asked Erik what he liked to do Erik responded "Play the plinano wif Mommy". 
     Tom thought that was interesting since gross motor benign hypotonia really only has large motor delays - most of these children are excellent with their fine motor skills.  It's true Erik's drawings are already representational and he loves to play the "plinano" and eat rice one small grain at a time (or flick it one grain at a time through the dinging room).
     So, this we can handle - he won't crawl to college, we may have to modify preschool a bit as he will likely crawl in there, but he will be fine with time.
     The hardest part for me is not shaving months off his age at the playground (which I am ashamed to say I almost always do), so I don't have to endure the questions and judgment of the others "2 years old and not walking??  "Wow he talks so well, I wonder whats wrong with his legs?"   Seriously it's so much easier to say he's 14 months old. He's a HUGE 14 month old, but his Momma's a big girl so it tends to be more believable.
      
     

8 years

Today, Mike and I have been married for 8 years.  On this day 8 years we wed, in front of two great friends and a judge in the courthouse in Las Vegas.
Why?
Because the December wedding that we had planned was beginning to be a pain to plan around everyone else's schedule, we'd already changed our wedding date 3 times...and honestly I felt like we'd have to change it again and I was OVER it.  Bottom line was I wanted to be married to Mike, whether in a big white wedding, or the courthouse in Las Vegas.  So in Vegas we wed!

This picture was taken moments before we were married and is the only picture of the day, as our friend who was taking the pictures left his camera in the last cab of the night.

We eventually did have that big white wedding about three months later, so we can't let the day go buy without a few pictures from that!

This buoy now hangs above our bed.  I love it.

My father playing "Sea Captain!"

It was REALLY REALLY chilly here!

The entire wedding!

The Parents

The Rings

The Wedding Party

Mike and his Dad George

Becky, Shanan and Madi - My little Disneyland inspired flower girl, who is now a high school girl.  Wow! Time sure flies by!

Steve and Becky

Yes I have a tattoo. I forget it because I typically don't see my back, except in pictures like this.  It makes me feel a bit rebellious to have a tattoo.....sometimes a good girl needs a bit of rebellion!

Happy Anniversary my Sweet Mikey!  I love you more than life!

Closer!

I met today with the psychiatrist.  I didn't realize that the paperwork before the appointment would be SO involved and SO detailed.  They needed to know everything about me, including the religion I was brought up in. I don't know why that would have any bearing on my surgery but OK.
The psychiatrist was a lovely man, who I felt from the second he opened the door was very "Mormon Bishop like".  Once I got into the office and saw the BA and MA on his walls from BYU and The University of Utah I knew I was in for an interesting conversation.  (Spoiler alert: Current active LDS could be offended by my story, please note this is MY issue and no offense is intended)
He took a moment to read through my paperwork, and paused at the "Recovering LDS" that I had written in the "religion" space.  He took a long pause as if trying to figure out how to approach me and why I had written that. 
He also saw that I had gone to Ricks (Now BYU Idaho) and for some odd reason spent 18 months in Guatemala and he fiured things out pretty quickly.  One box said "Have you ever had a panic attack" I checked the "maybe" box.  He described the symptoms and then asked me if I'd like to change my answer to yes or no.  I changed it to yes and he said "I don't need any details but where were you when you had one?" I told him I'd had 2 in my life.  One in the MTC (Missionary Training Center) and one in the temple.  Both of them were dismissed by MTC and Temple health workers as "lack of food"...which really is ironic don't you think?  I may have a lot of things, lack of food is typically not one of them."  Hmmm........perhaps it was a sign of things to come for me.
Anyway, he was lovely and passed me onto the surgeon with no red flags (Whew! I'm not TOO crazy), then it was on downstairs to Doogie Houser MD.
The surgeon (head of the department no less) is about 14.  I don't think he's old enough to grow facial hair, I just have to believe he's so young he's up on all the good stuff!
He did a quick exam and said I only have 10 more pounds to lose and then I'm cleared for surgery....woo hoo!!!  Then he talked me out of the lap band and into the gastric sleeve.

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So, I have another appointment mid-October and then we set a surgery date!  Woo Hoo!!!
Becky

25 Months

I know you want to ask.......no, he's NOT walking yet!  He did have his 24 month check this week which he could have taken himself to.  Every time the Dr. answered a question Erik answered it.

E - Hi Docto Wosen (Dr. Rosen)
Dr; Hi Erik, How are you?
E - Super Job!

She turns to me and says "Oh he's so cute and such a vocabulary at his age!" and then she says "Any concerns?" 
REALLY???????  This is why Doctor's have a bad rap....she's had COUNTLESS conversations and e-mails with me about his walking and she turns to me and says any concerns?  I wanted to flick her in the forehead with a big DUH and say...HE ISN'T WALKING AND HE'S 2!!!!!!!!  I'M CONCERNED!!  She even acted surprised when I reminded her about the non-walking thing.  Seriously Doctors, I know you have a lot of patients, but come on, remember the big things!

She took a long look at his legs, ran an MRI and pronounced him "perfect" and than he "just doesn't feel like walking yet". I insisted on a PT consult.  Luckily I got it.  Funny thing, the Dr. that I pay 30.00 to each time I see could really care less if he's walking or not. But Early Start here in San Jose, a non-profit FREE service for children under 36 months had 15 pages of paperwork waiting for me withing a couple hours of my initial phone call to them and they are already working things up for an environmental observation. I think I know who'd I rather work with.

In all other aspects beyond his gross motor skills he's well advanced, he can draw a circle, a line, recognize all the letters of the alphabet and numbers to 20.  He knows all his colors and told the Dr his favorite was "cacamarine" (Aquamarine).   He's a funny little guy, I asked him tonight when I was putting him to bed if he was my little baby and he said "Nope, I'm just a little pirate".  No idea where he gets this stuff.

He's also crazy 2 years old, he wears his emotions on his arms and can go from screaming tantrum throwing fit to loving kisses in a matter of seconds, as all toddler's do.

He's up to 33 pounds and 35 inches in height.  93rd percentile.  Whew!  Seriously I can't carry this kid anymore.

The tantrum Two's!

Wow, Erik had an epic tantrum tonight. It lasted for one hour. I have no idea what even brought it on, one minute he was fine, the next his head was spinning in circles and I would not have been surprised to see horns sprout from his head.
Talk about wailing and gnashing of teeth, it was all I could do to keep my extremities out of the way of his mouth.
I can certainly see how parents would fall into the bedtime trap of allowing children to do whatever they want just to make the screaming stop. I was about to strike any bargain he could come up with just to get him to stop screeching!
He finally flipped a switch and as quickly as the tantrum started, it ended. He was back to singing "Old Macdonald" with his choice of "a wall" or a "door" as things on his farm, and adding "sartruse" (chartruse) and "cacamarine" (aquamarine) to his list of favorite colors.......crazy kid!
On the diet front I've had to go for many tests, the most recent being one for sleep apnea. I stop breathing 18 times an hour, that's 126 chances a night that I could have a heart attack or stroke. YIKES!
The Dr. gave me a C-Flex machine. It's horrible. Not as horrible as dying, but horrible to sleep with and be comfortable. I'm really struggling to use it all night. I haven't made it a whole night yet. It's really hard to get used to. And so super unsexy. Here's Mike modeling it for you. Don't you think it brings out his lovely blue eyes?






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Two

Erik is now two, I thought for sure he'd be walking. Nope. He really doesn't care about walking. Some days I care, some days I don't. Everyone around me sure has an opinion though!
He's stuck in a weird place where his emotions are definitely two, his vocabulary is about four, and his legs are back at about 9 months.
He's in this new stage where when things don't go his way he immediately tries to bite, doesnt matter if its a table, a person or a toy. We've obviously been saying "Don't bite me!" often because now he yells BITE ME! just before he bites something....so we have to turn away and giggle at that. At least we get a warning now! One of my biggest fears as a preschool teacher was that my kid would be " the biter", thank goodness he doesn't go to daycare! I've started saying "kisses not bites", we'll see how that goes.
He also now answers every question we ask him with a guessing game a la (insert favorite game show host here). Erik, do you have a poop? " it's not a pee pee, it's not an accident, it's not pajamas". Oh look Erik there's a dog! " it's not a cat, it's not a lion, it's not a door". Imagine this is response to EVERYTHING we say. It's time to go to bed. "it's not time to eat, it's not time to play, it's not time for singing songs"........and repeat, all day. So interesting how he is classifying things by what they are NOT. He even does it with people, rotating his favorites. Say good night to Nana. " not to Jaymee, not to Grandma C, not to Papa and Mimi".......just say goodnight all ready!
Between the biting and the classifying it's like living with a Vampire Dr. Suess!
I'm interested to hear what the Dr will say at his 2 year check up when I tell her he STILL isn't walking. I'm sure Erik will let her know,"not running, not jumping, not swimming........"
Took these pictures of him today. In the second one he seems to be thinking about climbing the submarine!!






I'll let you know what the Dr cones up with since she swore he'd be walking by two.




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Horrible Parents 101

Eriks birthday is tomorrow. We are going to rude Thomas the Train....yippee! (yawn!)
Tonight we decided to give him a couple little presents and his favorite dessert. Flan, homemade by me (and Jell-0).
I even thought it would be fun to put candles in it. I KNEW he was too young for candles, should have listened to myself.
Now I have a child who spent the evening chanting, no flan, no birthday!! What was I thinking?
Tomorrow should be great as long as we hid all candles and no one sings Happy Birthday!