1550 miles

This past week and a half we drove over 1550 miles. To put this into perspective

1550 miles= 2500 kilometers

This took us roughly 5 days. 2 days there and 2.5 days back as we had to stop several times for Jagger ( 3 hour car ride is his limit). Spent 3 nights on the road at different hotels and 6 nights in Ohio. I loaded and unloaded the car about 10 times.

We crossed 4 states.

When you drive 1550 miles/2500 kilometers in Europe you would have easily crossed three different countries, learned to say hello and ask for the toilet in three different languages.

In most of Africa, 1550 miles would have probably taken about 3-4 weeks including abandoning your vehicle and continuing by canoe, foot, motorcycle, mule etc. Or another way to look at it: 5 days of driving would have gotten you to the city limits or maybe the suburbs:). I may be exaggerating a little but it surely feels like it every time I am there. If you think traffic and roads are bad here in the U.S. you have seen nothing yet. ;)

In addition to the countless hours of driving I also spend an additional hour cleaning Jaggy's car seat due to major poop blowout and an afternoon and $50 at the car dealership where the nice mechanics took our car apart to look for my wedding bands and engagement ring which fell under the back seat underneath the carpet into the frame of the car. Thankfully there are no holes down there.
The poop blowout resulted in an additional stop in BFE at some ghetto gas station in freezing rain. 1 hour and 72 wipes later Jaggy was clean but Sebastien and I had poop on our pants shoes and jackets. Lovely.

"I smell like roses"

We finally were able to give Jaggy boo a bath after the week long hospital stay. Bathing is limited at the hospital because his port is usually accessed.
He seemed to enjoy the bath. Was snoring most of the time:)

And now we have a squeaky clean baby who smells like roses as daddy always says.

Done with another hospital stay!

So it has been a while since we updated the blog, and we still have to write entries on the end of our Orlando trip and Sebastien Citizenship ceremony, we will try to do that shortly.

But for now, we just spend the last week in the hospital with another Pneumonia.

It has been nearly impossible to avoid those aspiration pneumonia, I believe this is our 4^th or 5^th already this year.

Last week Jagger was pretty agitated most of the week, we could tell something was not right. On Thursday I had a day trip to Chicago and he was not feeling well at all during the day, I was able to calm him down a bit and get him to sleep when I got home, but the next morning he was again having a lot of pain, agitation and labored breathing , so we took him to the ER.

And sure enough his white cell were pretty high and he had pneumonia, so for the 13^th time (I think), we were admitted to the hospital.

They put him on a different antibiotics than last time he had pneumonia since his stomach is still trying to recover from that one almost 2 months later.

On Sunday, they took more blood, the white cell were back down and Jagger was feeling better, so we were optimistic about going home on Tuesday.

But on Monday night, he started to have major breathing issues and was destating a lot, going down to the low 80’s, so we had to give him oxygen and we could only get him back to the mid 90’ on 50%.

So the doctor came back and we started packing our stuff to go to the ICU. But we were able to get his breathing under control around 6 am.

He had very thick secretions and since his muscle tone is very weak he could not cough them out so we had to do a lot of deep suctions. Jagger really hate that, but on the other hand who would like a huge tube going down your nose all the way to your throat!

We cut down one of his meds that can make secretions thicker and we were able to suction him thru the mouth (a lot better for him).

After that, he gradually got better and he is almost back to his normal self.

On Thursday afternoon, we were discharged and back home!!

We have a lot to do before  next Thursday, when we embark on our next big adventure, but we will post more about that this weekend.

Annett and Jagger taking a nap

" I m so ready to get out of here!!"

I pledge allegiance...

Sebastien successfully passed his citizenship interview and is now a full member of this society. He can vote and claim social security and can now join the peace corps. He was already able to join the army if he wanted to with his green card but not "fight" for peace. Go figure. He can also join the government except he will never be able to run for president.

Thankfully the branch of immigration services that does interviews and oath ceremonies isn't too far from our house. He had his interview on Thursday and was able to take the oath on Friday. I joined him for the oath. I had to be there to take a few pics at least. We usually do not leave the nanny alone with Jagger, this was an exception. In fact we never leave Jagger alone with anyone (last time we were both gone and Jagger was alone with the nanny he coughed really hard and tipped forward and fell off the bed onto the IV pole stand. Arghh. She learned her lesson and now builds a fortress around him if she has to step away for a moment. Of course Sebastien was far away at a mito meeting and I was at the dentist not really in a position to jump up and run home.)

The day of the ceremony we also had a nursing agency visit to do an assessment and intake paperwork. Jagger's routine was thrown out of wack and he was pretty restless and was breathing funny the entire day. Of course this was also the day my phone didn't work and although Sebastien and I were able to sit together while we waited for the ceremony to start we were soon separated as all family members were asked to remain in the back of the room.

I took his phone so I could keep texting with the nanny to get status updates on Jagger. I then communicated via thumbs up or down and head shaking or nodding to Sebastien. Although this place wasn't too far we still took two cars just in case I had to leave.

The ceremony was interesting. A little different than mine. As the MC read aloud (with much difficulty I may add) each country represented during the ceremony, that "former" citizen of that country had to stand up. There were over 40 nationalities present.

They then took the oath, pledge allegiance to the flag, a video played of president Obama welcoming the new citizen to this great nation, another video played showing scenes and landmarks of the US, economic wealth and employment and pictures of other oath ceremonies across this country. The videos were accompanied by patriotic soundtracks such as "America the beautiful" and "God bless America" by Lee Greenwood. The ceremony ended with the star spangled banner of course. Then everyone went to the front and received their certificate of naturalization. This whole thing lasted an hour although we spend 1.5 hours prior waiting for the ceremony to start.

Let's hope he was naturalized in time to vote in this upcoming election.

I'm in candy apple heaven

While Jaggy got a super sized Mickey, I chose candy apples as my souvenir from Disney. I know they don't last but the memory of their deliciousness will remain engraved in my taste buds forever:). These by far are the best candy apples I have ever had. Each apple dipped in caramel then milk chocolate, white chocolate and dark chocolate. Really, it can't get any better! With every bite I commented to Sebastien that I was in candy apple heaven. I just wish Jaggy could have enjoyed them as well.

Happy Birthday Boo-Boo (a look back at the last 2 years)

So Jagger turned 2 last Friday, that on its own is an amazing accomplishment.

What a big boy he has become and he even broke 25 lbs yesterday, that is amazing considering that he was stuck at 15 lbs for almost 7 months

He has one of the worst/most severe type of Mitochondrial disease, and I know several families with the same disease that lost their children before 2 years old, so we are bless to still have him with us.

But if you told me in January that he will see his second Birthday, I would have not believe you.

His pain was so bad and not controllable that we were adviced to get our parents to town to see him one last time, so on a short notice, we got my parent and brother to fly from France and Annett parents to drive from New York.

And by time my parents got here, he was doing better and was discharged a day later, so that was great and unexpected but we did dodge a bullet.

We still struggle with his pain despite the incredible amount of medication he is taking, and I am not sure if we will ever able to avoid pain crisis, but at least we can try to make them shorter and more manageable.

So let’s take a look back (in numbers) at the last 2 years with our little boo:

11  trips to the ER

10   hospital admission/stay (including 6  In ICU)

60  days in the hospital (including 30 days in ICU), roughly 11.5% of his life has been spend in hospital L

5   days on a ventilator

2   Surgeries (and that number is still low probably because he can’t have any more anesthesia without a 50-50 risk of not making it)

85  days with a NG tube (feeding tube in his nose. We switch to a G tube directly in his stomach on August 17^th 2011)

63  doctor and Therapist visit outside of our home (and that stopped on December 1^st, 2011 when he was put on hospice care, now we only go see Mito specialist a few times a year)

2 weekly therapy visits in our home (PT and OT)

11  daily medications  (plus some as needed for pain

31   doses of those medications he has to takes each day (plus some as needed meds for pain)

18-20 numbers of hours he sleeps a day (and the remaining 4-6 hours he is usually in pain for at least half of those)

And for the crazy number of the day, in his first 2 years of  life, Jagger medical bills (as of September 1^st) are: $510,270, no this is not a Typo, over HALF a MILLION DOLLARS. Now of course, that is not the amount we paid since we have insurance and Deeming Waiver, but we still had to pay a portion, it is not free even with good insurance!! I’m still shock at the number, this is absolutely INSANE that healthcare would be so expensive!!

And on the bright side:

2 visits to Disney (never to the park as he only has enough energy to be up 1 hour at the time during the day, but he still got to meet Mickey)

                                                                                                                                 

So as you can see, it is a daily struggle (and a lot of work) just to keep him alive, but it’s also a honor to do all we can to make his short time on his earth as happy and fun as possible.

I honestly did not think it was possible to love someone as much as I love my Jaggy, and his perseverance, positive attitude and happiness taught me (and everyone around him) so much. For a non verbal, non mobile kid, he definitely  know about to brighten a room and make everyone around him happy and smiley.

We really don’t know how many more birthdays (if any) we will have with him, so we just take it one day at the time, and make the most of each moment he is awake and we spend with him (as cliché as it may sound! LOL)

Such a big boy!!

And how tall are you?

Daddy couldn't resist. Apparently while I was shopping for my nieces and nephew at the Disney store in downtown Disney, daddy showed Jagger several different toys and he got excited when he saw Mickey. He launched forward wanting to bite his nose. We have a small Mickey from our first trip to Orlando with Jagger soon after he was born and he loves to chew on Mickey's nose.