Wednesday, July 16, 2014
Can't believe it's been almost 4 months since the walk. We have been so tremendously busy, we have been unable to send individual thank you notes to all those who donated for the EFL walk/ Jagger's team. So thank you everyone!! We are so blessed to have so many people caring about our sweet angel and helping raise awereness and finding a cure for this devistating illness.
In true Jagger fashion we spent the day of the walk in the hospital. He had a really bad respiratory infection which he likely caught from daddy who caught it the week before at the hospital when Jagger was recovering from his gj surgery.
Anyway, so only Sebastien, Jagger's uncle Tony and some of sebastiena high school friends from Indiana along with a colleague of mine attended the walk on behalf of Jagger. To top it off, the weather was horrible and the walk was moved indoors. Kids loved it though as there were several activity booths and people dressed up as character (princess Sophia, power ranger etc.)
Hopefully Jagger and I will make an appearance next year!
Again thank you everyone for our kindness!
Saturday, March 22, 2014
It's this time of year again. We are participating in the annual energy for life walkathon for Jagger at Centennial park this coming Saturday March 29th at 10:30 am. Just like last year, our team is called "Moves like Jagger." I know it seems silly but Jagger has a movement disorder (among many other things) caused by his mitochondrial disease.
Here is a link to our fundraising page. Please sign up and walk with us if you are in town and interested!
As always thank you everyone for your support!
Jaggy is sending bubble kisses:)
Sunday, March 2, 2014
No I am not talking about a cure or even a genetic diagnosis which we still don't have. I am simply referring to the fact that after 4 months,we finally received the growth kit for Jagger's wheelchair. I am not really sure what took so long since this kit essentially is just a bigger seat cushion and side support arms but what the heck, we finally have it. Probably just in time to trade in the wheelchair for a bigger one.. Lol. The company we use is NuMotion and they claim they have "sensational customer service". I don't know if I should laugh or cry about that. After 20 phone calls, numerous emails, calls to supervisors and the central office it only took 4 months to get the pieces for the wheelchair. Apparently I don't have a critical ill child to take care of and a full time job! But we finally got the stuff so hallelujah!
In turn, we had asked for a new feeding pump because ours broke and hospice doesn't carry the one we want. So we got a new script from our GI, a week later I decided I wanted a super mini backpack as well. So called in the request to our GI and supply company (different then the chair). While I was at it, I requested a completely new pump bc of warranty issues. Within a week I had a new pump still in the original box with instructional DVD, mini backpack for the pump, and feeding bags which we didn't even request.
I almost fainted when the tech delivered all this stuff with a week of me asking for it. Lol.
Let's just say company A can learn a lot from company B!
Saturday, February 8, 2014
As the saying goes: "when it rains it pours"
Just to give everyone a glimpse of our daily adventures. Sebastien and I really are never able to rest. EVER.
I am still chasing Jagger's growth kit for his wheelchair. It has been a frustrating and dissappointing.
Yesterday we noticed that the Meds we had ordered never arrived and after some investigation we found out that they were classified for pick-up and not delivery. That's all nice and dandy if it's the local CVS down the street. Jagger's Meds come from speciality compounding pharmacies. Our is over an hour away, each way. Argh. So Sebastien got up early and drove sometime in between both our work conference calls.
Then at night Jagger's feeding pump malfunctioned or rather it's computer froze. None of the buttons work and we couldn't get it to start. Of course this happened at 2 am. I called the supply company twice (2am and 3 am) to no avail. So we decided to gravity feed. Thankfully when it comes to his supplies I keep everything (borderline hoarding) and so found same gravity bags in the closet. This method didn't work out so well unfortunately so we decided to use syringes instead until we fell asleep around 4. At 5:30 the supply company called to tell me they cannot help because our pump is no longer under warranty. Great. Spend the rest of the morning before heading to work trying to find a replacement. We absolutely cannot go without! Jagger doesn't eat by mouth and needs the pump to feed him.
Around 11 am finally got a pump from a different supply company. It's not the same we usually use so we had to change our entire set-up but it will do for now while we figure out how to get the one we want.
Saturday, January 25, 2014
Jagger is and always will be the center of our universe. Our lives evolve around him and he is most happy and content with mommy and daddy. He craves our affection and hates being alone. Pretty much nothing changed since the day he was born:). He loves to be held, cuddled and kissed which we gladly do all day long. And honestly I am glad he lets us because he is so adorable, we cannot resist! It really is impossible to walk by him and not give him a kiss or touch him.
He continues to sleep in our bed and now that we have a big king size bed it's even better. He sleeps right in the middle cuddled between mommy and daddy both holding his hands and giving sandwich kisses. He really loves it and is completely content waking up like this every morning and so are we:)
Sebastien is still Jagger's absolute favorite person but I am trying my best to steal this title:) But one thing never changed. Jaggy is and always will be mommy's favorite person:)