One year ago today the world changed. Happy Birthday Maaike

My dearest Maaike,

You were such a big baby!  8 pounds 14.5 ounces.  Too big, in my opinion, for an all natural delivery, but it was too late.  Right after your arrival they plopped you on my tummy and I was able to told you for just one moment, but in that moment our bond was solidified and you became mine.  I tried to listen to what the doctor was saying, something about lasers and "its only cosmetic", but I was being distracted by stitches and imaged you had webbed fingers.  Then they brought you to me, your purple lip perfectly pursed. We had no idea what lay ahead of us and, thankfully so, as we had one day together blissfully unaware that anything was wrong.  It wasn't until the next day after your bath that my lotion filled hands would caress a magnitude of tiny bumps hiding in the sweet fleshes of your neck.  You can thank me later for not allowing them to send you to another hospital with a wet-nurse for an MRI.  Instead we held you close and made dozens of long distance phone calls.  Everyone rallied to get you quickly home, your doctors, the embassy, our families, and even Li Ayi.  You set us on a whole new course, a new continent, a new consciousness. Our lives are so much better for it.  Thank you dear Maaike for coming to us.  These next few years may be though at times.  You will have more surgeries and challenges to climb, but today on your birthday let us be as blissfully unaware as the day you arrived and only enjoy each other and the knowledge you are mine.  Happy birthday.

                                                                                                    Love,
                                                                                                           Mom
                                                                                                       

Have trach, will travel

We just got back from our road trip out to California.  It was relaxing, bonding, and, as my husband put it, empowering.  We only had one small snag at the very beginning, one and a half hours into the trip in fact, when I realized that the one thing I had forgotten to pack was Maaike's oxygen tanks.  It was definitely one of those, "you have got to be kidding me!" moments.  I didn't forget the sunscreen for the beach or gummy snacks for the car, but I did forget a major piece of life saving equipment.  After a relay of calls from the top to the bottom of the state, two oxygen tanks and a trach clip where reserved and loving placed in an unlocked vehicle for our after hours pick up in an up coming town.  Disaster averted.  On to fun and games. 

 Maaike only uses oxygen when she is sleeping so we would hook her up to the rental tank and drive as far as we could while she snoozed.

 We kept the pulse-ox in between the front seats to watch her stats.

 The mirror above her seat is an absolute essential.  That way I can watch her pull off her "nose" (HME) while I'm driving and hopefully see where she throws it to retrieve it when I pull into the emergency lane.

On our first day at Disney Coy said we were, "probably the only people here with a kid with a trach."  I said we probably were, but who knows.  On day two we found out we weren't as a little boy in a stroller passed us with his trach and matching suction bag.

I want to be like Mike!

We had another appointment up at the hospital this week.  It didn't go as we had hoped and now we are finding ourselves having to make some really tough decisions for Maaike's future, but more of that later.  One good outcome of our appointment was a little more research that brought us to two beautiful boys who are just like our Mike.

Liam is just a few months older that Maaike and his parents have started a foundation to pave the way for more research for cystic hygroma.  We have been emailing back and forth with his parents over the last couple of days which has been tremendously therapeutic and informative.  To find out more about Liam and their foundation go to http://www.liamsland.org/

 Kody lives in England and is at least a year older than Maaike.  He has already undergone some of the suggested treatments for cystic hygroma and we are anxious to learn more.  You can learn more about Kody at http://www.mymultiplesclerosis.co.uk/million/kody-barrowman.html

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Sunglasses for a vampire baby

Being homebound for the winter did more than perpetuate Miss Maaike's silky white skin.  I never would have thought to anticipate this, but with such little exposure to the outside world Maaike's eyes turn red and watery at the first glimpse of sunlight.  Thank goodness the fashion powers that be make tiny shades for little babes.  I choose the goggle style because I knew that if the frames narrowed her view she would never keep them on.  And yes, they have 100% UV protection!  Her tiny button nose hardly keeps her glasses up, but she didn't mess with them.  I figure she has enough tough things in her little life to get down about so stepping outside is a great time to see that with a little perspective, and some great sunglasses, everything is coming up rosy!