Temporary insanity and Mickey Mouse

So this year we decided to do Mickey theme for Jaggy's birthday. (last year was cars). I already looked around and am able to find Mickey balloons, plates tablecloth etc.

Well apparently that was not enough. We are on our way to Orlando to have breakfast with Mickey:)

Sebastien has to be in Orlando for several days this week. Our nanny was sick and is now out all next week due to a family emergency. Jagger was pretty bad last week when daddy was gone and he (Sebastien) was already stressing out about being gone again so I proposed we all go.

Oh boy what were we thinking. We are used to traveling and also traveling on a whim/last minute. Except traveling with a medically complex child is difficult and now add less than 24 hour prep time. Well that could be considered insanity.

So around 4 pm yesterday/ Saturday we decided to all go Orlando. So we spent the rest of the afternoon and night packing and doing laundry. Thankfully Jaggy was pretty content; probably because daddy kept singing to him that we are driving to go see Mickey;)

We left our house at 2 pm Sunday afternoon. 2 hours behind schedule but it could have been worse.

I am very impressed with us/ mostly myself for having organized and packed all his medical equipment and supplies, his special formula, cooler full of Meds, his clothes ( had to take ton extra in case he pees or vomits); spent some time on the phone with supply company to figure out what to do with oxygen, made food for the road etc. I am even more impressed I was able to fit all our/ Jaggy's stuff in the car using every inch available while not blocking rear view mirror. Aside from his medical equipment we also took his humongous stroller which thankfully comes apart and two oxygen tanks ( no time to get portable oxygen concentrator).

So Mickey here we come.

Made in U.S.A.

I decided to decorate Jaggy's plain white onesies (only thing I could find in his size) :)


"Made in the U.S.A. with French and German parts."

Lesson learned and the mega diaper

I like it when I actually learn from past mistakes:). Jagger is doing better but still has some diarrhea. We had ordered some special probiotics which hopefully get here tomorrow.
In the meantime, I now come prepared to the battle/poop time with disposable pads and mega diapers all "gifts" from the hospital :). Key is to layer. Several diapers and pads. As he poops through one we just peel of the layer and he can continue without too much of a mess.

Thank You, Danke, Merci

Thank you to all our family and friends for sending us/Jagger care packages.

Despite doing laundry almost every day or at least every other day, we still need everything multiplied. Thanks for the clothes and blankies.

Thank you also to our friends from down the street who brought us a home cooked delicious chicken dish and biscuits after we got back from the hospital. We certainly didn't have time to shop or cook.

And thank you to "our special friends" from Indiana? for your letter and your kind donation.

Jaggy is sending kisses to everyone

Our tiny sparrow

I just want to post the link and instructions again as I don't know if folks reread my entry from the other day.

Tiny sparrow made a very nice slide show for us which they posted on their website on August 29, 2012.

Jagger tiny sparrow foundation page

You need flash player to view the slideshow so if your looking at the website from your iPhone or iPad it will not work. The first picture of the slideshow is a profile of his face in black and white. You need to click the arrow in the middle of the picture to start the show.

Thank you again tiny sparrow and our photographer for these beautiful memories.

The center of our universe...literally and tiny sparrow

It shouldn't take long to figure out that I am talking about Jagger. He is indeed the center of our universe as our lives evolve around him. Even though this can be challenging at times, I wouldn't want it any other way.

I want to say thank you again to the Tiny Sparrow Foundation and our wonderful photographer, Catherine, for capturing some beautiful images of our family, especially Jaggy boo. I call this photoshoot "the center of our universe" because Jaggy is in our center for several of the images and he truly is our universe; he is the love of our lives. Below are a few more photos and the rest can be seen on the Tiny Sparrow website :
Jagger Tiny Sparrow foundation page

Our entry should be on the top (for now). If you read this entry at a later date, our photos and slide show were posted on their website on August 29, 2012. I absolutely love love love the first picture of the slide show of his face (you can see his long eye lashes nicely). Click on the arrow on the picture and it will start the slide show. You need a flash player for the slideshow to work, so if you are using an iphone or ipad you will not be able to see it.

Ps: had to get a pic of his feet. I absolutely love his feet (but only his). His big toe is usually flexed (part of is muscle tension/spasms) but it is his trade mark.

If you are considering donating to an organization, please put Tiny Sparrow on your list!!!! They have been amazing to work with and we are thrilled with our photos. We will also be getting a photobook from them.
Our photographer travelled over an hour to come to our house and we didn't have to pay for anything. They are creating so many beautiful lasting memories for so many families who are facing the unthinkable: loosing a child. This photoshoot was a nice distraction between Jagger's intensive medical care and his hospital stays. We had a lot of fun doing it and of course were anxiously waiting for the results/end product. These days, usually when we wait for results it's his genetic testing or lab work and those are never good or rather status quo. You really dont look forward to those, you rather dread to know as somehow when you think it can't get any worse, it usually does. So Thank You Tiny Sparrow and Catherine for these beautiful photos. We will cherish them forever.

Je suis irrésistible

The beauty and challenge of working from home is to stay focused and not get distracted by our beautiful angel.
It is literally impossible not to go see him every few minutes and play and cuddle with him.

Between work and errands Sebastien was running around like "a chicken with its head cut off" as he likes to call it. Well after speaking with me for a few minutes this afternoon he rushes off leaping down the stairs towards his office while telling me he has so much work to do and needs to call a customer asap. Not even 30 seconds later I hear yodeling, high pitch singing, clapping and feet stomping. I knew exactly what happened and at the same time wondered what happened to the "ASAP". Daddy ran into Jaggy and the nanny on his way to the office (which is on the first floor of our home) as I don't think yodeling is a new communication technique he is using with his customers :). Jaggy must have been awake so Sebastien couldn't resist cuddling and playing with him. Jaggy is just so irresistible. Always has been and always will be! Not sure what it is but I blame his blond hair with semi curls, his long eye lashes and big brown eyes.