Update

Earlier this week we got the call that Makenna's first surgery on her legs and back was getting moved up from September 11 to this Thursday. While sudden, I am thankful that we have been spared a few extra days of anticipation and instead cramming it into just one week. So tomorrow morning we'll make the familiar drive down to Children's Hospital in San Diego for a 7am check in with an 8:30 procedure time. My mom has been here all week to help me through the anxious days leading up to this, and like Italians do when we're worried about anything, we've been cooking, baking and lighting candles at church and just enjoying every second with our sweet pea.  This procedure will be the first of many to help lessen her symptoms and is much less invasive than the surgery she had when she was born but will still require that she be under general anesthesia each time, so needless to say it's a little nerve racking being at the base of the next mountain in our journey.  But Makenna continues to amaze us and we know she'll do great.

And we've already agreed that when this kid is old enough she gets all the ice cream cones she wants!

She Got it From Her Mama

Most people say she looks like Mark, but these dance moves are all me. Here is a little bit of her shaking what her mama gave her.

"Good News". . .

. . .is the first thing the doc said as he burst into the room followed by 'the ultra sound showed so much improvement Makenna won't need to have kidney surgery!" To say we were relieved to not have to go thorough another major surgery would be a huge understatement! Although our little 'old soul' must have known all along that the kidney problem they detected when I was 20 weeks pregnant had fixed itself because as we headed into the hospital from the parking garage she was all smiles and singing the happiest tune I had ever heard. I kept thinking "this poor kid doesn't know what's coming" because our last trip here was an only slightly less than miserable day. But even so, she was so happy nearly every passerby smiled a little, giggled a little and eventually couldn't resist poking their head into the stroller to see where this joyful noise was coming from. And of course, she sailed through it all and a few high fives and flying Dubbie laps around the office later we all left with smiles on our faces. Yay!

Happy Kidney!

So if you're keeping score, the upcoming surgery/treatment count is holding steady at 6 for the immediate future with her laser procedures starting on September 11. Please wish us luck!

Hedgehog of the Lake

This past week we made our way to Ohio for our yearly trip which marked a number of 'firsts' for Makenna. Many of which had me beat by about 15 years. Here we go. . .

First flight

Successful but no less uneventful we made it to Ohio in one piece. The short story is we had a quick layover in Vegas where somehow I ended up running across the airport with Goose in hand (stroller and ergo were logically with her dad on the other side of the airport) after picking up a sandwich, made it to the flight just in time for boarding which was great except the pilots didn't which meant we got to hang out on the plane for an extra hour before takeoff, in which time said sandwich fell on the ground. Here's what she looked like halfway out of Vegas (the only 5 minutes she slept the entire trip):

Her Dad usually looks like this leaving Vegas too

First time in Ohio

Mark has been going back to Ohio every summer for most of his life and I just made my 8th (ack!) trip myself. It was so fun to have Makenna make her first of many summer vacations here at the lake.

Hello Apple Valley!

Her own digs

The flying Dubbie

First boat trip

She got to see her Daddy do what he does best (wakeboarding if you didn't guess), and cruise around the lake in the lap of luxury (her bouncy seat). We were happy to see that she LOVED being on the boat because there's a good chance she'll spend quite a  bit of time on it over the years. We had many conversations about 'how young is too young to learn to wakeboard?" over the course of the week.

Daddy's still got it

Proud Dad and Dubbie

Momma's still got (some of) it

Best seat in the boat

First Midwest storm

Open the fridge door too quickly or heaven forbid Mark sneeze somewhere upstairs and she'll jump, but thunder, lightening and fireworks don't faze this kid at all. Which happens to be a good thing since we had quite a bit of all three this week. 

First big storm!

Snuggly on the porch watching the rain

First trip to Pleasant Hill

We made a day trip to the cabin at Pleasant Hill Lake where Mark spent his summers growing up for a day of boating with his cousins. We were lucky enough to get the best water and the best weather of the week.

They spent 20 summers on this lake

Flying Sponge

He spent a lot of time here growing up

The next generation 

First time meeting the family

Makenna is great-grandchild #39 with two babies already younger than her and we were lucky enough to see quite a few of them at the house and again at the farm for the 4th of July party/fireworks extravaganza.

We knew from the past few weeks of bbqs and bdays that this kid liked to party (no idea who she got that from) but this was taking it to another level as she did great cruising from arm to arm and table to table. We had a great night as we watched her daddy be part of the firework crew putting on the display (I was equally entertained by the number of lightening bugs out that night - for a California girl that never gets old:)

She didn't even flinch when these went off

First horse encounter

First 4th of July

Mark's Aunt Claudia and Uncle Mack joined us at Apple Valley to celebrate the 4th with some good food and lots of cornhole.  

First Fourth!

Our Sweet Pea

Aunt Claudia and Uncle Mack

The Cornhole battlefield

California Goose takes Ohio

First time getting 'iced'

Well, not really. Someone thought shaking a shiny bottle at her would make her smile, this is how that turned out. . .

Until next year. . .

West coast or bust!

FYI - the blog is public now.

The Aunts Come Marching In

I don't know if it was the California sunshine or this precious little goose, but either way were able to lure my Aunt Teetsie (remix of Theresa by one of us when we were young) down from Seattle for a week to hang out with us back in May. We had fun walking along the beach, a quick trip up to Redondo for cousin Dom's second bday party and lots of shopping and lunch dates. We really tried to make her miss Cali by taking her for a cruise to La Jolla topped off with a fun lunch at the La Valencia Hotel where the Goose (and her monster stroller) got the royal treatment.

But quite possibly the most valuable discovery of her trip was the magic of the 'Jump in the line/Shake Senora' song that prompted Makenna's first outward chuckle at 2 and a half months old. We all know Pandora can throw some wild cards at you, but this just might have been the wildest. In the full throws of her reflux angst, butt naked and wearing a ducky towel, this song came on and we went from distress to pure heaven and it continues to make her laugh to this day. I'm sure Winona Ryder would have been proud (name that movie!).

Fancy shmancy at the La Valencia

Seals in La Jolla

And speaking of SEALS. . . .

My sister (you may know her as the 'Seal') made her way to the mainland for a visit back in June. Now I know it wasn't the California sunshine that brought her here from Hawaii ('Dina - how can you live here? It's so COLD in Southern California!') so I'm going to say it was the Goose. Either way it was so nice having her here to spend time with us!

No this photo isn't in black and white

In other, less fun, news I was contacted by Boston University to participate in a study as they are researching birth issues that don't run in families or have any known causes, and since we've got this times three I figured I better sack up and do it. The only discomfort listed was the 'anxiety that may be caused by some questions' asked during the phone interview which had me a little apprehensive before we began. All in all I realized that because I'm a worry wart (something that DOES run in the family) I was neurotic about doing everything 'right' during my pregnancy and ate enough leafy greens to make even Popeye blush, so I wouldn't do anything different and that these things sometimes just happen.  I don't know if that makes it better or harder to understand, but I do know that this kid is amazing and that all of this crazy stuff she has had to (and will have to) endure will only make her tougher and even more awesome.

My Moon and My Stars

If this face doesn't bring a smile to your face...you may need a new face.

KTS

I prefer referring to it as 'KTS' because it sounds a lot more like a surf brand than a vascular condition, and its almost impossible to say 'Klippel-Trenaunay Syndrome' out loud and not sound like a complete idiot (you totally just tried it, didn't you?). Anyways, some people have asked me about this, some people have braved the wilds of the internet, while others are blissfully unaware, so I thought I'd lay down the quick skinny on what's going down with the Goose these days.

She got diagnosed the day she was born while in the NICU by the guy who literally wrote the text book on it, and we've been assured that it is completely unrelated to the omphalocele (her surgery) or the pesky kidney thing that's still hanging around (the trifecta!) which makes her one pretty special little lady. The symptoms that awarded her with this incredibly rare title are that she has one limb larger than the other, in this case her legs,  and extensive port wine stains.  That day we were told that her condition could 'get better or get worse' over time but we've come to find out that was only in reference to the difference between her legs and not the PWS, and it appears that our chubby little hedgehog has filled out in all the right places in the past couple weeks so the difference is barely noticeable at this point - you'd have to be looking pretty closely for it to tell and we're praying this continues to be the trend. Heck, I've got one eye bigger than the other which you've probably never noticed (caught ya! You were just about to scroll back to pictures...) so a little character never hurts.

Although this Momma has a penchant for polka dots, unlike regular birthmarks that fade to brown or disappear as you get older,  PWS are a result of some blood vessels gone haywire and only get progressively worse over time. Her engineer dad likes to describe it as a 'vascular programming issue', and depending on their location, they can make the organs closest to them go a little haywire too which is what we've been doing at all these appointments over the past couple of weeks, which have thankfully come back normal (the biggest of which being a check on her spinal cord).  Apparently you'll rarely ever come across them reaching their potential because everyone gets them treated at some point, preferably when they are as young as possible to achieve the best possible results without any memory or pain to the little one.  They have been known to start these laser treatments when babies are only weeks old but have decided to give us time to chill out for awhile since we've already had her surgery to recover from. And while it is unbearably hard to think of her going through anything more than she already has, we have been assured by every person who has knowledge of and/or experience with PWS that this is something we MUST do for her as it will only get more difficult, with less positive results the longer we wait and would be a huge disservice to her not to do this at this time.

All this being said, if you've met her, seen her, loved her, you already know she looks like the happiest, healthiest little goose around and you'd never know she'd already been through so much. Not to mention we think she's pretty freakin' cute and are hoping her bigger leg might even give her a leg up in soccer some day (pun totally intended - I'm obviously not above the lowest form of humor). So if you've got a nano second or two free please feel free to send any prayers, karma, happy thoughts and good vibrations to Makenna as she starts her next medical adventure!