"Iceman"( yes Top Gun)....hospital stay # 17

Back again. Fourth time this year and it's only April. We actually went to the ER a week ago thinking Jagger had pneumonia but X-ray was clear and bloodwork was ok. They gave us antibiotics and steroids nonetheless. Antibiotics in case he was starting to develop pneumonia and steroids to open his airways and help with his funky breathing noises. Well sure enough we are back a week later with major pneumonia. Worst one he had so far and back in the ICU. We had a sleep study done as well and although it was normal we decided with the our pulmonologist and ICU docs that it would be a good idea to start bipap to help keep his lungs inflated.
So we started bipap. Oh boy. We were able to convince the doctors tht a full face mask may not be ideal due to his bad reflux and vomitting. But what they brought wasn't any better. Lol. Pictures say it all.

After 10 days in the ICU he was well enough to go home and we got both cough assist and BiPap from our DME company. Yuppy more stuff!! Thankfully they have nice equipment and a nice nasal mask that doesn't look like something from the last century or something they use in a laboratory. And this one actually fits properly! Since Jaggy boo still sleeps in our bed cuddling with daddy (don't think this will ever change) Sebastien was not looking forward to the BiPap at all. But we do what we have to for our precious baby boy!

Unfortunately he missed the Energy For Life Walkathon! But we had a great team walking on his behalf and many many generous donations!

Energy For Like Walk- Atlanta. Moves Like Jagger

This post is way past due, but the last weeks have been pretty crazy. Jagger is back in the ICU with the start of lung failures (post on that to come in next couple of days)

In top of it, we are officially involve in the real estate transaction from hell, we are suppose to close on May 23rd but so many last minute crazy events happened since we signed our contract that I am not even sure what will happen!

So let’s get back to the walk!
It was such a great event, and it was so rewarding to see all our hard work (as I m a part of the organizing committee) paid off!
Everything went as plan and we had a larger crowd that expected.

We estimated that 800 people showed up and we raised almost $80,000 (we are still counting some of the money from the day of the walk).

I was also able to meet a few of my fellow facebook Mito families and it is great to finally meet after talking online for so long!
I also wanted to thank everyone that came and walk with our team (my host family came from Indiana and Arizona and my high school friends came from Indiana), everyone that donated to our team and everyone that took a minute to check our Moves like Jagger page and shared with their friends to raise awareness.

Of course, the only thing that would had made that day better for me, was if Annett and Jagger were able to participate, and I hope that next year, Jagger will be leading “Moves like Jagger” at the 3^rd Annual Atlanta EFL walk.

 The UMDF also had a EFL walk in Evansville on May 4th and some of my high school friend started a team and walk that day. Thank you very much to Allison, Augusta, Michelle and her husband Craig! It is so cool to see Moves Like Jagger team going "National" :)

Great Crowd at the Walk

 Everybody is dancing!!

Moves Like Jagger Team (Libby, Riley, Rebecca, Stacy, Sebastien, Tisha

Leslie, Tiffany, Christine, Don, Samuel. Only missing on the pic

are Madeleine-photo shy and Gabe-stuck in traffic)

Team Shirts from the back

And we are walking, along with 800 of our closest friends :)

Even the Chick-Fil-a cow was there!

Moves Like Jagger Evansville Team (Augusta, Allison, Michelle and Craig)

Sleepless in...

We finally did Jagger's sleep study. It went exactly as expected. Jagger couldn't sleep with all this stuff on his face and whined till almost 2 am. He did sleep for about 3 hours but did none of the weird breathing noises he does at home. Well let's just hope this study shows something because we have no intention of repeating it. I think subconsciously we kept delaying it because we knew how challenging it would be and honestly we have enough day to day challenges with him we don't need any more. We are also in the hospital so much with him going there voluntarily for non illness related issue takes some convincing. Also we are a bit anxious regarding the results. We know a bpap or cpap would ultimately help him breathe better but it's another piece of equipment and he would have to wear a mask at night. Not exactly sure how that will go since he hates anything on his face except for our kisses and he still only sleeps snuggled in daddy's arms.

Energy for Life Walkathon-April 20th, 2013

After we found out that Jagger has a Mitochondrial disease, we were able to find a lot of good info from the United Mitochondrial Disease Foundation (UMDF).
Of course, since I can't stay still, I decide to get involve with the UMDF. I first attended the symposium in DC last June and it was such a great event, along with 3 other Mito parents, we organized a small symposium synopsis in Atlanta upon our return to be able to share the info that was presented in DC with all the Mito families that could not make it to DC.
Another event I am currently involve with is the Energy For Life (EFL) Walkathon. I am in the organizing committee and I am the Co-Sponsorship lead.
This is the second year for the EFL walk in Atlanta but we did not participate last year as we were very new to the Mito world and not aware of the walk!
However, this year on top of helping to organize the entire walk, we also created a team to support Jagger and join the walk. We decided to keep the same theme as our website: "Moves Like Jagger". After all we will be walking/moving!
The walk is on April 20th, 2013 at Centennial Park in downtown Atlanta. It is right between CNN Center, the World of Coke and the GA Aquarium, so there is plenty to do after the walk if you have never been to Atlanta.
The registration opens at 8 am and the walk starts at 10 am. It is 1 mile thru the Park with beautiful landscaping and great skyline views of the ATL.

We would love for everyone to come walk with us, but we know it is not possible, however you can register as a Virtual walker on our team, even if you cannot be present.
The goal of the EFL is two folds, 1) raise funds to find a cure and 2) promote awareness of Mitochondrial diseases.
So if you are in a position where you can make a donation as big or small as you want/can, that is great, but if you can't please just spread the word about the EFL walk and Mitochondrial disease and feel free to leave us a comment on our EFL page.
Here is the link for our team, we hope a lot of you will join Moves Like Jagger!

EFL Atlanta, Moves Like Jagger

See you on April 20th!

Barbershop

Aside from bathing and changing another challenge regarding personal hygiene is cutting Jagger's hair. He doesn't have head control and constantly moves. We cannot (and don't want to) take him somewhere to get his hair cut so this is another skill I have to learn. I don't know anything about cutting hair but decided to at least buy a real hair cutting scissor. Not sure it really makes a difference because according to Sebastien I butcher his hair every time. Oh well I never claimed to be a hairstylist and the good thing about hair: it grows back!!

Let's just say my latest attempt was pretty unsuccessful. I used his wheelchair to prop him up but by doing so I was only able to cut about 1/3 of his hair. He now had a mullet as I can't reach the back and the front is a bit crooked as he kept turning his head.

Considering the difficulty we are having cutting his hair I can't imagine what we would do regarding his teeth. I hope he never has to go to a dentist because they would have to sedate him for sure and we cannot do that.

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:)