Moves like Jagger, EFL walk

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!

http://www.energyforlifewalk.org/atlanta/moveslikejagger

As always thank you everyone for your support!

Jaggy is sending bubble kisses:)

"Do you believe in miracles?"

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!

The perfect storm

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. 

And the award goes to.......

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:)

Any Given Sunday

Until reverently our household was pretty much divided. Colts vs Broncos or rather Peyton. Now that the Colts are out of the playoffs we can finally focus all our attention on the Broncos/ Peyton. We are hoping that the sports gods are kind this year and grant another Super Bowl victory to Peyton Manning. Yes, for those of you new to this blog, we are huge Peyton fans. After all Jagger's middle name is Peyton after Peyton Manning who according to Sebastien is the greatest player who has ever played the game:) So good luck Peyton on February 2nd. We are cheering for you 200%. And in case you would like to change your key play word from "Omaha" to something else. I have two suggestions for you: 1. "Jagger", 2. " Timbuktu". I think the latter will most definitely confuse your opponents. Lol. 

Once upon a time (Hospital Stay 19,20 and 21)

It's been forever since we posted. Not because we didn't try! It's been a crazy year and honestly neither Sebastien or I had the desire or emotional strength to relive everything again for a second time. It's is hard to describe to others but to sum it up. Life has been extremely exhausting!

Sebastien already posted a little about the house but that's just a small part. 

The year started with several hospital visits and pneumonias (see previous posts). Once we started bipap around April/ May things improved significantly. His lungs were starting to heal and look healthy. Then our nanny got sick right around the time we decided to look for a new house. Many homes were visited twice, once by Sebastien and once by myself as we could not go together. We took Jagger along ones which was very very difficult. 

Our nanny continued to miss more and more days of work and ultimately had to leave us around the time we found a new house due to her health. Moving was a disaster. There was no time for organizing/spring cleaning. Everything was packed mostly by my parents and myself. With my parents help we finally moved around July 4th weekend it was a mess but honestly there was no other way if we ever wanted to move. I am still busy organizing, cleaning and decorating 6 months later.

Then we decided to get nursing. Since our nanny left we had been without help for weeks which had  put a huge strain on Sebastien and my abilities to do our jobs. We both stayed up many many nights till 3 or 4 am just to finish our work when Jagger is sleeping. The whole nursing thing ended up being a disaster also. Usually Sebastien is the one that dramatizes everything but I think he would agree with me. It was one headache after another. 

To make it brief, nursing agency took forever to get doctors orders, insurance approval and find us a nurse. We had two that never showed up. And then two others who quit after 3 days. And one who kept quitting and coming back. The one thing we didn't want and which we made very clear to the nursing agency was that our house is not a revolving door. We want one nurse and one nurse only and not someone new every week. That concept seems completely foreign to them. Also meeting the nurse prior to her coming to start working was another foreign concept. Maybe Sebastien and I are anomalies but to us it seems logical to ensure customer satisfaction. 

After a few weeks of extreme frustration, disappointment and many headaches our insurance decided we no longer need nursing and they denied everything. It didn't help that our nursing agency got orders signed by a doctor that we never met and who doesn't know anything about Jagger. So when our insurance reached out to the doctor to get clarification about prescribed treatments they never heard back and hence denied everything. Two months and two appeals later they now approved it again for 90 days. After that we will see. But a month after approval we still don't have a nurse!

While all this was happening Jagger's health declined significantly. He started having major struggle breathing mixed in with severe pain crises and we ended up in the hospital again in October. This time around though not for pneumonia but atelectasis. His lungs are collapsing because he is too weak to take deep enough breaths. We spent thanksgiving in the TICU for the second time since Jagger was born, so it looks like that his our new family tradition, Thanksgiving in the ICU. We went home the weekend after Thanksgiving but things never improved. Breathing was terrible. Struggling everyday. Doctors started to hint that it's disease progression. We knew this was coming but our hearts still filled with sadness and anxiety. Another hospital stay right before Christmas confirmed that the disease is progressing (Sebastien will post more about that). We were able to do an MRI even though he was awake. Conversations again started to center around further interventions and if we want to Trach him.  I hate talking about it or thinking about it. But I agree with the Doctors. We have to think about it to prevent making any rash decisions in an emergency. It's just extremely difficult because the only reason I would ever consider putting tubes in him is if it improves his quality of life. But no one can guarantee this to us. So we could just potentially prolong his suffering. Its a decision no one should have to make!

After 20 stays we can do it all even de-access a port!

Trauma Room, waiting for an ICU bed, Hospital Stay 21

Let's get on a chair for a few minutes- Hospital Stay 21

Look who served Thanksgiving lunch at CHOA! The Champ himself.

Taking a walk with Mom- Hospital Stay 21

I even got to see Nemo but I was so tired I couldn't keep up with his swimming!

"Steel" magnolias

I am finally starting to catch up with the posts, so this is probably not news to anyone but I still wanted to post it on the blog!!

Well, we have a new home for Jagger aka Jagger's Palace lol. It has a beautiful magnolia tree in the front yard and is surrounded by many tall pine trees. 

We loved the old place, but it was a townhome and has 3 stories so as Jagger is getting bigger and bigger (about 35 pounds), it is getting harder and harder to get him up and down the stairs, so we have to move.

It took us a while to find the perfect home for him and we ended up looking at 18 homes but we found the perfect one.

Unfortunately , it was a sale by owner and not to get into details it was the real estate transaction from hell, we even had to get a lawyer to get it done (which cost us more money of course).

But now we have the home, it is a ranch with hardwood floor and very wide hallways and door frames which is great for his wheelchair/stroller.

Even the home inspector said that he never saw such home before and it was build for handicap people for sure!

We will be able to move him around a lot easier and we even have a backyard. Now, Jagger doesn’t really like to be outside, but we will try now that we have a private yard for him.

The owner left the house very very dirty, messy and left a lot of her stuff she did not wanted anymore, so it took us a while to get everything ready and we were able to move in on July 4^th weekend thanks to Annett's parents who were such amazing help!

UPDATE: We have now been at the house for 5 months, and we do love it

It is so much easier with Jagger, and he gets to see a lot more since he is not stuck into one room most of the day!

We still working on getting a ramp so we can get the wheelchair to the back patio, so when the weather gets better  we will be able to take him outside.

Front of the house

Back Patio, hopefully we can take Jagger to it soon!

Kitchen before

Kitchen After. Annett surprised me with an island while I was on a business trip!