Saturday, September 29, 2012

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.

Sunday, September 23, 2012

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.

Thursday, September 20, 2012

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 17th 2011)
63  doctor and Therapist visit outside of our home (and that stopped on December 1st, 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 1st) 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!!

Tuesday, September 18, 2012

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.

Happy birthday Jaggy boo ( from mommy)

Happy birthday boo! Alles Gute zum Geburtstag, joyeuse anniversaire!

Jaggy is now 2 years old. How time flies. We are very happy he is still with us as a few months ago this was not a guarantee.

Thankfully he is still a cuddle bug. He loves loves loves to be cuddled and kissed that is what we do all day long, 24/7. Thankfully, because we cannot resist. It really is impossible not to kiss and cuddle him when you see him.

Jaggy was spoiled as usual. I went all out on his birthday decoration. When Sebastien saw my work he said I went a little crazy/ over the top. But there is no such thing as too much for our boo. Jaggy also blew out his own candle. Mainly by accident while coughing but regardless how, we were thrilled he blew it out by himself:)

A few stats

Age: 24 months
Names: Jaggy, boo, puce, Hase/ Hasi, the cutest baby ever, mommy's absolute favorite person, Boo bear
Length: 35 inches
Weight: 25 pounds
Head circumference: 17.5 inches
No of teeth: 15 or 16. I am not putting my finger in his mouth to verify. It is not that important to loose a finger over. He has a jaw of a predator with fangs and everything:)
Hair color: dirty blond
Favorite toy: still Sophie and Mr. Turtle and Otto the dog which are star projecting toys
Favorite book: I love you mommy
Favorite place: in bed cuddling wih mommy and daddy
Favorite thing to do: getting kisses from mommy and daddy, chewing on daddy's finger
Least favorite: bath, changing, poopy time

Monday, September 17, 2012

100 questions and poop

The way back home from Orlando was pretty uneventful except for the mega poopy diaper we had 2 hours from home. It is always so joyful changing him in the car. The crammed space, him half on half off the seat and then poop everywhere on him. I kept screaming "wipes wipes" as Sebastien kept throwing wipes at me from behind and I kept throwing dirty ones back at him.

Jaggy did good for about 4 hours and then got pretty restless. I kept Sebastien entertained with his citizenship practice test which consists of exactly 100 questions. For not having studied, he got 92 questions out of 100 correct. I was very impressed and I think this accomplishment should make him an honorary member of congress:). I am pretty sure that most people wouldn't even get 50 questions correct.

During the interview they will ask him 10 questions. He has to get 6 correct to pass. Let's just hope they won't ask those 8 he got wrong during our practice session. Lol.

Sunday, September 16, 2012

Mickey, Pluto, Lilo and Stich

Jaggy was finally able to meet Mickey on Thursday morning. Because we were driving back on Friday, the day of his birthday, we decided to have breakfast with the characters on Thursday. Sebastien had to be back in town for his Saturday UMDF meeting during which he presented a recap of the mito symposium in D.C. this past June.

We we went to a character breakfast at Ohana's (disney polynesian resort) Breakfast was good. Jaggy got to meet all the characters. Stich kept giving Jaggy kisses on his forehead and at one point you could barely see Jaggy's face which was buried underneath Stich. We had to wake Jaggy in the morning although he slept through the diaper and clothing change and the 10 minute ride there. He did wake up as we got there and was awake for the characters but fell back asleep right after. We were able to get pics with all four characters. It was good that we got there late/last seating because many families had left already and it wasn't super packed. Most families want to eat early so they can beat the crowds at the theme parks.

It definitely was bitter sweet. Seeing all the other kids running around was a constant reminder of Jagger's limitations. Actually it started with the waiter bringing a cup with a straw for Jagger so we had to tell them to take the cup and the third place setting off the table since he cannot eat or drink.

Those other families have no idea how good they have it. Their biggest worry is probably the lines at the theme park or making sure the kids don't get a sunburn or sun poisoning. Our biggest challenge is to make sure Jagger gets all his meds and feedings on time and he gets plenty of fluids and rest. And of course our biggest worry everyday is whether Jagger will have a major crash today that could send him over the edge. It is very hard to explain what our life is like. Only those other families facing similar struggles can really relate. It takes an enormous amount of energy, strength, patience and concentration to care for a child with disabilities and/ or terminal or chronic illness. You can never fully relax, always need to be two steps ahead of everything, anticipate and prepare for multiple scenarios and always have a plan b. It is extremely exhausting both mentally and physically. It is kind of like the 36 hour shifts or so doctors do at the hospital except they get breaks and relax for a few days and we don't. We are "on call" 24/7.

After breakfast we walked around the property a bit but couldn't linger too long because Jaggy needed to eat again (we try not to feed him while we are out moving around unless we have to. Few times we tried it usually ends in vomitting). Jaggy was sleeping in his chair for most of the walk. He actually seems to like it both the walk and his chair.

The resort is very nice. All resorts at Disney/ Orlando seem very nice. The Polynesian resort definitely looked like Hawaii or Tahiti with the tropical flowers and beautiful landscaping. Except it was missing one major ingredient: the ocean;). They did have a nice pool with a water slide.

Friday, September 14, 2012

"Here puppy puppy puppy"

Jaggy has a new friend:)

In our effort to work on his fine motor skills I bought some flash cards to teach babies sign language. Jaggy really likes when we take his hands and tap on things such as daddy's cheek which usually feels like sandpaper or playing drums on daddy's belly :).

He also like the sign language for dog. You take his hand and tap the side of his upper thigh and say "here puppy, puppy." This makes him smile all the time.

So he finally met Maddie, the cutest puppy in the world. They seem to like each other. At one point Maddie was licking Jagger and Jaggy was trying to lick Maddie. So adorable.

Tuesday, September 11, 2012

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.

Monday, September 10, 2012

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.

Sunday, September 9, 2012

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.

Friday, September 7, 2012

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."

Thursday, September 6, 2012

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.

Saturday, September 1, 2012

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