Waiting to exhale....

We went to see Jagger 's pulmonolgist today. I was pretty excited that I was able to get an appointment with her so quickly. Usually she is booked 4 months in advance. The recent hospitalizations made it very clear that we need to do something differently to care for his lungs. It has been almost a year since we saw Dr. B. we hate to take him out of the house for doctor visits where usually nothing gets accomplished or we learn nothing new but this one was important. We really needed her help to figure out a plan to keep him from having all these pneumonia episodes. No one else has been really helpful with that. Our hospice solution to everything is increase his medicine doses for the narcotics ( eg. Methadone and Valium). I finally told them we disagree with this approach if his pain and discomfort is due to and infection. By now Sebastien and I can usually tell when he's coming down with something and just increasing his Meds will not help his breathing or irritation if the underlying condition/ cause is an infection and will not keep us out of the hospital. This is what I call tunnel vision! Just because he is in hospice or has a terminal illness does not prevent him from getting other infections which can and should be treated.

Dr B. gave us some good ideas and came up with a plan to help clear his lungs and heal them! I does involve more Meds but all inhalation so that's ok.

I was very much looking forward to this appointment expecting her to give us some answers/guidance. Which she did! She is also very knowledgable about mito which helps tremendously. Overall a great visit. Let's see if her plan works!

"oh happy day, oh happy day"!

Jaggy has been smiling non stop since we got home from The hospital this past sunday. He was actually also pretty content in his car seat in the way home.
Sometimes Jagger smiles and laughs after his Myclonic seizures but this time he was smiling just like that. He would see me and smile:)

To bathe or not to bathe that is still the question!

I think we need a new bathing solution for Jaggy. What do you guys think? Lol

Trying to coordinate getting a bath chair from our DME company and Medicaid. Oh joy. Let's see how many denial letters they will send this time. Still dealing with payment issues for his stander.

Hospital stay #s 14, 15 & 16 but who's counting. Lol

My new years resolution for 2013 was to reduce our hospital stays to 2 total per year. Well we already passed this number by mid February. I guess I should think about a new resolution:)
Jagger had been hospitalized twice for aspiration pneumonia and atelectasis and once for rhinovirus. The second aspiration pneumonia was bc we went home too fast after his rhinovirus. He kept vomiting for three days after every feeding despite only half strength. Lesson learned. Either we stay longer and wait till he tolerates his feeds for a few days adjusting up and down while keeping him hydrated on IV but risking further exposure to other bugs or go home on IV which is another challenge in itself bc our hospice doesn't provide IV fluid. We are trying to negotiate with them. Poor boo. His lungs need a rest!!
Since we were in the ICU at the end of January, we had to posptoned our trip to Akron for the EPI trial. We are schedule to go at the beginning of March now. It will be the "final" visit for the trial, but we still have to go every 3 months or so for follow up visits as long as we want to stay on the drug and it has not been approved by FDA (probably until end 2014 at earliest). We are trying to work with the team in Akron, to have 2 of the 4 yearly  follow up done in Atlanta, that would be a tremendous help for us!

I have to say though finally after 15 stays folks at the hospital are finally starting to get things together. They follow our instructions, warmly welcome our ER protocol and love our two page medicine sheet. We no longer have to say anything. Nurse comes in and automatically asks about our medicine sheet. Either she heard about it from another nurse or remembered from last time! I guess we have made quite an impression! With over 30 doses or so a day you have to have things written down! Anyway they love it! Our instruction/ medicine sheet consist of two pages which are laminated/ in a plastic sheet protector. One has a table which lists his medicines by time and dose. The other sheet lists all the Meds together by total dose per day and bulleted instructions regarding his feeding schedule, and other important information regarding his care. We developed this sheet as a quick reference for our nanny or anyone else who would have to care of him in the event shall anything happen to Sebastien or myself. I am also working on a true care manual but needed a cliff note version for immediate care.

Foodie

I must admit I am a Foodie.
I just love food, I love to cook it and to eat it.
But with Jagger there is no much time to cook anymore, or to go out to eat.
I used to travel a lot for work, and I was very often gone the entire week, leaving Monday morning and coming back Friday afternoon, so we had a habit to go out to eat every Fridays evening after I return and we were able to catch up on each other week's event. And usually we ended up at our favorite Sushi place!!
But those days are over and I can't even remember last time we had a meal just the two of us, probably close to 1 year.
So to make up for it, I try to get some "fancy" food delivered once in a while and since we were having company for Christmas and New Year, I figure it would be a great time to order some food.
So I got a full 16lbs boneless leg of Prosciutto di Parma, Red Label, my favorite ham. If you never try it, you are totally missing out.
I also got some great Prime Ribs and we enjoyed them with Annett's parents and with my parents.
And last but not least, I was able to find a company in Hawaii that deliver fresh caught Ahi Tuna.
One of the many things I miss about Hawaii is the amazing seafood, and this place does it right. It is shipped between 5-6 hours after it is caught and you get it the next day. Not cheap, but they had a great special for the Holidays, so I ordered twice and we totally enjoyed some seared Ahi Tuna and some Poke.
Annett got me a Poke recipe book for Christmas so I had to try a few of them, but it is hard to find Tuna in Atlanta that is fresh enough for Poke and you cannot make it with any fish that was previously frozen!
But now that everyone is gone and that we been so busy, mostly being in and out of the hospital, I am finding myself eating frozen dinners! LOL, so I need to work on my next food buy!! not sure what it will be yet!! :)
So enjoy the pictures below and Bon Appetit!!

Must Try Ham!!

 Prime Rib "Before"

Prime Rib "After"

 Fresh Ahi Tuna from Hawaii

 Seared Ahi Tuna Steaks

3 kind of Ahi Poke and a Kona Brew to wash it down

Christmas 2012- Part 2

On January 11^th, my parents and my brothers arrived.

It was the first time in almost 2 years when we were able to be all together. Even when we went to France with Jagger (when he was 6 months old), my brothers had to work so we really only had 1 day all together back then.

On the 12^th, we went to the local Tepanyaki (Hibachi) Grill, it is kind of a tradition to go there as our first meal when my parents come visit. Jagger did OK, but was very agitated the entire evening after that! Showing us again that he just wants to be home all the time!

On the 13^th, we did Christmas celebration and dinner, we had a great meal and opened presents by the tree. That was about time, because the tree was really starting to show signs that it was not going to last much longer. We had it since the 22^nd  of December so it did last a long time!

The rest of my parent's visit went well, my mom got to spend a lot of time with Jagger so she was very happy. I had to go out of town for a couple of days for work, so it was nice for Annett to have some help.

My little brother is infatuated with the TV Show Nashville, so as a surprise  we made a day trip there and I was even able to get reservations at the Bluebird Café (if you watch the show, you know that is a big deal! LOL), it was not easy to get those but it was a  very cool place. I also took them to the Country Music Hall of Fame and the Ryman.

It was a fun day but very tiring for me as I got back from my business trip at 10 pm the night before and drove 8 hours in 1 day round trip to Nashville, so we did not get home until 2 am!

The rest of the trip went well, and my brothers left after a week since they had to go back to work, my parents were able to stay 4 extra days and enjoyed every second with Jagger.

So in 2012, Jagger had two Christmases and got to see most of his family, I bet not many kids can say that!

 Second Round of Christmas gifts opening

  Second Round of Christmas gifts opening

  Second Round of Christmas gifts opening

 And that's how you trim a tree..lol

 Family Pic

 Goofy Family Pic

 OK, A little more serious now!!

 Ready for some Lobsters!!!

 Last meal before departure, Imperial Fez, awesome Moroccan food and great entertainment

Christmas 2012- Part 1

So this year, we decided to do Christmas twice, first on the regular day with Annett’s parents then in early January with my parents and brothers.

Any 2 year old would love that, but Jagger doesn’t realize what is going on so that did not make much difference for him.

As usually he was spoiled, even if it gets harder and harder to get him anything, since he doesn’t really play with any toys (or very few) so he mostly gets clothes, which is good since he is growing like a weed!  Annett and her parents did built him a toy arch over his cozy sack so he can look and play with different textured and colored toys hanging down infront of him.
We tried to have as normal Christmas dinner as possible but Jagger needs to be help 24/7 so it is very rare that we can sit down and eat all together, actually I think Annett and I have probably not have a sit down meal in our house together for the last year or so. We have to take turn eating.

But for our Christmas dinner, Jagger was very sleepy and we were able to put him on his Cozy Sac next to us and we actually had a regular dinner!

We also went to Stone Mountain Park to go see the light. They had bunch of activities going on and the entrance fee was $ 20 a person, but we explain to the gate keeper that with Jagger we will not be able to stay more than 15 minutes anyhow so we really did not want to pay for such a short time and she was very nice and let us in.

We had time to make one smore before Jagger got super agitated. We left not even 10 minutes after we got there. But at least we saw a few Christmas lights. Once again this shows us that we really cannot go anywhere, I know sometimes people question why we don’t take him out more but that was the perfect example, he does not like to get out of the house and makes it very clear every time we do go!

Annett’s dad went back to New York for work right after New Years, but Annett’s mom was able to stay with us a few more days now that she is retired.

We had a good time and Jagger loved the extra attention he got!
After Annet's mom left we had 1 day to get ready/organized before my family arrived from France!

 Jagger ready for Christmas!

Oma and Oppa opening presents!

No Jagger you can't eat that!

At Stone Mountain Park

At Stone Mountain Park with Oma and Oppa