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:)

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.