Necessity is the mother of invention

After once again searching the internet for one piece body suits for Jagger I may decide to start my own clothing line. Heck, if it doesn't exist,make it! Right!?. Short and long sleeve onesies in larger sizes such as 3t, 4t, 5t etc. are hard to come by. There are a few but they are expensive and only white. I guess I could color them but I am afraid of harmful chemicals etc.
So far we have been pretty good in either modifying existing products to meet our needs or found solutions/products by other parents who have kids with special needs (such as tummy tunnels and Gtube pads from mybuttonbuddies). If these products did not exist already I would have made them myself. The Gtube pads are awesome. Had no granulation since using them and everybody at the hospital is always fascinated by them. We had tried the tape and gauze thing in the beginning to absorb any leakage but that was not practical or useful.
I will create another page on this blog and post a list of useful products that we use.
I already have a name and design ideas for my label. Just need to find a manufacturer who is able to make larger onesies/ one piece body suits. I rather use a company here in the US that already produces wholesale clothing for resale. Plain with no images in preferably organic cotton and multiple colors.
If I want to do this I better work quickly. Jaggy is getting so big and although he could wear regular Tshirt they are not practical or safe.

"Mr Big Guy"/ Happy 21 months birthday my Angel

So Jagger is now 21 months and 9 days. He is growing like a weed. At the hospital the nutritionist wanted to scale back his daily caloric intake because he is growing too fast!! Wow. We never thought we would hear these words as we had struggled with weight gain for most of Jagger's first year of life. Of course Sebastien and I are not changing anything. Jagger's weight constantly fluctuates and every time he gets sick he looses some.

Some quick stats:
Current weight: 22 pounds 4 oz ( roughly 10 kg)
Height: 33.5 inches
Teeth: 14
Hair: blond (getting pretty long but mommy can't bring herself to cutting them)
Eye color: beautiful hazelnut brown
Favorite toy: safari animal car, Sophie, vibrating star
Favorite book: "I love you, mommy!"
Favorite music: "j'eveille mon bebe" French baby music cd
Favorite color: red
Favorite place: rocking chair in living room
Favorite person: DADDY
Favorite thing to do: watching sports and cuddling with daddy in living room rocker; getting kisses from mommy
Least favorite: bath, changing

"modele unique"/ "the odds are never in our favor"

After many months of waiting, we thought today would be the day we would find out which gene mutation Jagger has. We are pretty sure he has Leigh's disease as clinically he has all the classic symptoms. He definitely has a mito disease that is for sure.
Finding the mutation is likely not going to matter for Jagger as there really is no cure for any mito disease and we focus on treating his symptoms as they present. However, I want to know the mutation to know what the chance of recurrence is in future children. Without a known mutation they cannot test Sebastien or I.
Of course, the test results came back normal. They will rerun some of them but all genes they tested and suspected which could cause his disease are all normal. Soooooo frustrating. We were warned that this might happen but nevertheless were hoping at least this one time the odds are in our favor and they find something. Still have to discuss how to proceed and how badly we want to know as everything has a price.
In the meantime we will try our best to keep Jaggy happy and pain free and we continue to shower him with 1001 kisses every day.

Home sweet home

Last night was pretty uneventful (did require some oxygen at one point but after a little suctioning he improved) so I asked the docs if we can go home today. My goal was to be on the road by 11:45am so we would be home by noon just in time for the next feeding. And that is exactly what happened. I like it when things go exactly as planned (doesn't happen very often these days). Because we have oxygen, monitor and suction at home the docs had no problem letting us go. Of course I didn't leave without asking for everything and anything. Got extra supplies, prescriptions etc.

Jaggy is sleeping now and eating. Grandma is cooking and grandpa is running errands (pharmacy to get antibiotics and cortisone cream) and back to hospital bc we forgot projection night light. My goal is to one day not to forget anything. We already lost our phone charger twice but so far never forgot Jaggy:).

Apparently my angel doesn't suffer enough already. He has a major rash from Iv tape. I knew he was allergic but it was either this tape and higher chance of sticking or other tape and risk of having to change needle again. Considering the one hour ordeal he went through last time I decided to go with the bad tape hoping that he may not break out immediately but really A no win situation.

Daddy is currently wrapping up in DC and will be home later tonight. We miss him.

Hospital stay no 9??? Maybe the 10th one is free :)??

Jagger is back in the ICU since Tuesday... Of course because daddy is supposed to go out of town. We somehow always end up in the hospital when daddy has a major tip planned or its somebody's birthday:). I think this is hospital stay number 9?? I stopped counting. As I was walking out the door on Tuesday morning Jagger suddenly developed a fever. He had been extremely whining and agitated for a few days already. He also started to breathe funny so we hooked him up to the monitor to see. To our surprise his SpO2 level was actually above 90 but his heart was hovering around 175. ouch. So after a dose of Tylenol and an hour of monitoring he didn't improve so we took him to the hospital. We also thought he may have a UTI because he only peed about once a day at that point. Turns out he had early onset of pneumonia and an ear infection. Any normal kid would have been able to fight this but not someone like Jagger. His body had been struggling for a few days, and I guess the lack peeing was an early sign. So they gave a dose of motrin and antibiotics which helped. But of course he was breathing a little funny (as he does at home) so they decided to put him on high flow oxygen which pretty much means ICU admission. Well we also told them that its either the ICU or we are going home. Dr. Ka from the ICU came and met us in the ER and transferred us to his services  (I had asked him if they have room for us and he said for Jagger we always have room. That was nice!). Our neurologist was paged out of his lecture at the med school next door and palliative care team also heard we were at ER so they all came to see what was going on. Of course in the ER we argued with the doc about his medicine and when to give them. They refused to give him his valium because they were worried about his breathing and didn't want to suppress it however what I kept trying to tell the doc is that if you don't give valium he will go into major spasms and will also stop breathing because of the pain. Jagger seemed ok at that point so I didnt argue further but of course as soon as we transferred he went crazy and it took an hour or so before they had us checked in at the ICU before he got his meds. I always carry his meds with us so was going to give it regardless of what they say. Arghh Jagger was sleeping for much of Tuesday but was pretty agitated during the night. He finally fell asleep at 6 am and at 7:30am EEG people came to hook up the electrodes to his head. We were thinking that Jagger is suffering from silent seizures so wanted to check if anything else was going on. Also apparently most kids with Leigh's disease suffer form seizures so we were always wondering why Jagger doesn't have any. But its possible that with all the drugs he is on we are suppressing the majority of them. Well big mistake to do EEG. Everything went down hill from then on. He got so agitated during the time they took to hook him up, he then started a major pain crisis from about 9-11 during which he was arching, stretching and screaming. To make matters worse, his tape came loose around his huber needle, breaking the sterile field. WE tried to fix it but the needle actually came out. We tried to g-tube morphine. Nothing, tried IV morphine which went everywhere (at that point needle was still half way in but it didn't work). Then tried to flush with heparin to prevent clogging, that failed too. So we took needle off, called cancer unit to come re-access him. OMG, the nurse, who was very good, tried for an hour. Had to clean and prep the area again, the he re-accessed. Didn't work. No blood return. Arghh. Jaggy is hysterical, Seb and I trying to keep him calm to no avail. Nurse went to check xray of port to see if he needs to angle the needle differently. He was in, I know he was but didn't work. Cleaned area again, this time I told him to use saline to check syringe and flush with saline to move things around in the port. Thankfully he listened because even the second try, there was no blood return. He had to push saline and pull back about 30 times or so delicately moved needle around a bit. It was a disaster but he was very good. It is very possible the port clogged since we couldn't get any heparin in him for some time. Nurse didn't even break a sweat. He remained very calm despite Jaggy going hysterical. Finally it worked and we gave him IV morphine and we settled. At this point Sebastien was ready to cancel his DC trip. But Jagger was better in the afternoon and overnight and our doctors encouraged him to go so he left on Thursday morning at 6am. It's a good thing that he went. He met with senators and congressmen to advocate for funding and raise awareness for mito disease and to attend the united mitochondria disease foundation symposium. He also was able to meet with another doctor from Ohio who is trying to get Jagger into the EPI 743 study and he found out major scoop which I will not talk about yet. But it is sickening and infuriating. It is Friday night now, I am exhausted but Jagger is doing better. We were planning on going home today but his oxygen level dropped last night several times and they put him back on oxygen for a bit. So I decided to stay one more night to monitor this and it seems he is only doing this at night because he was totally fine all day sleeping. The plan is to go home tomorrow if nothing else happens. Fingers crossed!

Thank you Peyton

I meant to post this a while back, but things have been very busy and crazy here lately. Although we have become much more efficient (time is a luxury we don't really have), there really never seems to be an end in sight. Paperwork here and there, dealing with insurance and pharmacy, maintaining the house etc.. it just never ends. 

Anyhow, the influence of the Colts and Peyton Manning is of course all over our house and in Jagger’s Middle name and two very “cool” things happened in the last few months.

So our good friends Tara and Aaron somehow contacted the Peyton Manning foundation and told them about Jagger’s situation (I presume) and it was a very nice surprise to receive an autographed picture of Peyton in the mail. And not one with a stamp signature but a real signatureJ So thank you Tara and Aaron!

Just a few days later, I went to get the mail and we received a handwritten envelope with no return address, which I thought was very strange for sure. So I went back to my office and opened it, Annett was there with Jagger and I just became speechless so Annett was wondering what was going on, and I was just so shock I could not even tell her. It was a handwritten letter from Peyton Manning telling us that he knows about Jagger’s situation and he wanted to send us a note of strength and encouragement and to let us know that he is a big fan of Jagger’s J.

It turned out that my “brother in law” knows Peyton Manning from his work and he shared with him a few entries from this blog (particularly the Peyton Manning tribute entry). So thank you Libby and Tony for sharing our blog!

It still amazed me that with all that was going on in his life, moving his family across the country, new team, rehab, etc., Peyton Manning took the time to write us a note for Jagger. It just shows what a classy and great person he really is!

So if you do read this, and even if you don’t, Thank you Peyton! I hope that one day Jagger can read that letter on his own and even if he can’t I read it to him several times alreadyJ.

Desperado-the nightly serenade

Daddy recently found his old guitar in an attempt to clean his office (which to his dismay is also used as storage for all items that do not have a place anywhere else in the house). The sad part is that I didn't even know he had a guitar!!

So he comes to the bedroom, smiling and playing a few strings, excited about his new found treasure. He then proceeds to tell me that he took guitar in college as a required music class but failed it because he broke his finger playing soccer so could no longer learn to play the guitar. This explains why he doesn't know how to read music and why the guitar is completely out of tune!!  Again I had no idea! However, this does not stop him from serenading Jaggy and myself every night with his own versions of Desperado, some Beatles, Simon and Garfunkel and of course Patriiiiiiiiick Bruel. The serenade ends with Jaggy usually looking surprised and wondering what this noise is while mommy rolls over laughing and shouting "Please make it stop".

This pic has nothing to do with the topic but I love it.
Like father like son!