Hakuna matata

Went to dinner last night with our friends Sarah an Chris and their puppy Maddie. It was really nice to see them and we hopefully get to hang out again this week.

Boo was an angel. Didn't complain at all. He actually went to sleep. Of course when we got home he was ready to party. At 12:30 am we somehow thought it is a good idea to try to get him to poop since he hasn't had a bowel movement in 4 days. Great, we go from one extreme to the other. Diarrhea-constipation.
After an hour of whining and unsuccessful pushing he finally fell asleep.

I feel pretty accomplished today. Sebastien had to leave early, I had several conference calls this morning and worked for a few hours, got all his Meds and food prepared for the day, changed sheets and did laundry.
Boo slept till 3 pm, he finally had a bm and we went for a walk.

Boo seems to like the comfy bed. He already marked his territory twice lol. Thank goodness for washable bed pads and the washer and dryer in our room.

Sleeping on a bed of pillows...literally

Despite this being a last minute trip, so far I don't think I forgot anything except for my german crossword puzzle. Well I figured I won't have time since I still have work to do and early conference calls pretty much every day.

I did bring almost everything except for the kitchen sink:) : meds, supplies plus extra, laundry detergent and Oxyclean, washable pads and extra sheets for the bed in case he pees (could have left sheets at home as I brought queen and we have a king at the hotel), bottle brush and dish soap, extension cord with multiple plugs as there are never enough outlets. I even brought Otto, the star projecting dog and his tools for his stroller. Thankfully I brought the tools because several settings shifted and needed to be adjusted.

(side note: I don't obsess about a lot except when it comes to Jaggy. Especially his peg tube and his chair. I hate other people touching or messing with his tube and I hate when things are not symmetrical, especially his chair. There are so many pieces that move it is almost impossible to have everything match or straight. Anyway thankfully after calling the manufacturer they sent me the proper tools so I can adjust the chair myself which I do constantly.

So despite having thought of almost everything, I did not bring a bed wedge. Although the pillows here are nice and fluffy, they are too soft and collapse when you put your head on them. The reason why Jaggy boo was agitated till 3 am because daddy couldn't get comfy. Everything was too flat (our bed at home has an adjustable base) and Jaggy kept sliding off the mountain of pillows. I on the other hand loved it. It has been a year since I slept on a flat bed. I miss it more than anything and suffer from severe back pain every day bc of the incline. Sacrifices we make:)

After a restless night for Sebastien, an ok night for Jaggy, and a blissful 4 hours of sleep for me, I called the front desk in the morning asking if I can get pillows or something else to put under the mattress to lift the head portion. An hour later I had 8 more pillows and voila. Problem solved! (I hope)!

"It's a small world after all"

We finally made it to Orlando around 9:45pm. Took us about 7.5 hours. We had to stop several times to change diapers and to give Jaggy boo a break. He got pretty restless after about 4 hours. We are making progress though. We used to not be able to go even 5 minutes down the street without him screaming bloody murder.

One of the reasons we decided to all go so last minute is because Sebastien had already reserved a 1 bedroom suite near the convention center and sea world with plenty of room for everything and enough space to stay inside if need be. It also has a full kitchen and washer dryer. It is actually very nice (one of those vacation resort time share properties).

And in true Florida fashion we already killed our first guest cockroach:)

Jaggy boo was pretty exhausted from the drive but still continued to fuss until 3 am. As soon as we arrived I told Sebastien to take him to the room to calm him down and watch the Denver Broncos football game and let me unload the car. Boo was pretty agitated and whining but as soon as Sebastien turned the tv on and found the broncos game, Jaggy stopped. He always liked football not sure if its the colors or the announcers or the fact he has been hearing and watching football with daddy since he was born. Should be no surprise that Jaggy is getting two new football jerseys for his birthday:).

After a long night, Jaggy slept most of the day today. We still have to check out the property. It's pretty nice from the pictures I have seen.

But for now will let him rest and I will be spending every night in the best feature of this whole place.... Giant jacuzzi bathtub.

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