Monday, April 22, 2013

"Iceman"( yes Top Gun) 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!

Saturday, April 20, 2013

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 3rd 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)

Wednesday, April 10, 2013

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.