Friday, April 20, 2012

Happy 19 month Birthday

A week ago, Jagger turned 19 month!!! How time flies..Happy Birthday mein Engel.
Some quick stats:
  • Current weight : 21 pounds (9.5 kg)
  • Current lenght: 32 inches  (~82cm).
  • Names: Jagger, Jaggy, Hase/Hasi, Boo, Boo bear, Jaggy Boo, pumpkin, meine allerliebste Lieblingsperson (mommy's alltime favorite person), the "Jaegermeister"
  • Number of teeth: 14 (not all completely out yet and some extremely sharp)
  • Favorite toy: Scout, Sophie, Mr. Turtle (shines stars at night), daddy's finger to chew on, Philibert the fish rattle, safari animals, vibrating star, Gustave the lamb pillow
  • Favorite book: the gift of the ladybug, ABC foam, 
  • Favorite thing to do: cuddling with daddy while sleeping or watching sports; sitting on mommy's lap and rocking while mommy whispers secrets, getting sandwich kisses from mommy and daddy
  • Favorite color: red
  • Favorite song: many (classical, Bummi, Lundi matin, Gugusse, der Harrung, Laterne, etc.)
  • Favorite time of day: night, because he gets to cuddle with mommy AND daddy at the same time
  • Favorite person and hero: DADDY
  • Least favorite: bath time, changing, not being held, doing exercise
Bet you can't tell who got me this shirt! lol

Sunday, April 15, 2012

My Angel

My sweet angel. He is my absolute favorite person (even when he screams until 2 or 3 am:)) and I tell him so every day. Thankfully he lets me hug and kiss him as much as I want which means I cuddle with him all the time. And with that face, it is hard to resist:)

Saturday, April 14, 2012

"May the odds be ever in your favor"

Well, I had to quote the Hunger Games.  Thanks to Tiffany (our Nanny) and to Mr. Jagger who was doing well at the moment, we were able to take a few hours break and go see the Hunger Games. It was the first movie we were able to see at a theater in almost 2 years. Life has been very busy and going to a movie was surely not on the priority list. We went to the local Movie place that serves food so we even killed two birds with one stone..lunch and movie!! It was nice getting out and having a date with my lovely wife. And I also found the movie to be very good, I believe it did justice to the book, which is very hard to do!

On March 18th, I attended my first UMDF United Mitochondrial Disease Foundation) Chapter meeting. It was very good, and I was able to meet several parents that also have Mito kids. Sometimes it is good to meet people that can understand your everyday life struggle first hand.

One of the mom present at the meeting (Tiffany) introduced me to Dr. Ke, who is another leading Mito doc in the country. I was able to converse with her for about 15 minutes and decided to set up an appointment at her office so she could meet Jagger. The usual wait time to get in to see Dr. Ke is about 4 to 6 weeks, but Tiffany had an appointment two weeks later and gave us her time slot. That was so nice, so if she reads this, I want to say thank you one more time, your kindness was greatly appreciated by both Annett and I.
So on March 28th, after switching the car seat which had been sitting in our garage for months (hoping the seat and the forward facing position will make the trip more pleasant for Jagger), we headed to Dr. Ke office which is about a 30 to 40 minutes drive from us. Jagger actually did pretty well during the trip and barely complained at all. However, I must say it is getting harder and harder to travel with him. He requires so much equipment such as feeding pump, suction machine, meds, etc that it is an expedition just to go down the road. Luckily this time, we did not have to take his oxygen tank with us!

Annett and I are both very impressed with Dr. Ke, she took her time going over Jagger’s condition, explaining what we should expect, answering any questions, and we were there for 2.5 hours. In all our dealing with the medical field since Jagger was born, we never had a doctor dedicated so much time to him!
We discussed a drug trial that could be beneficial for Jagger and she is trying to see if she can get us in. However, that would probably require for us to move out of state for a few weeks/months, but we will get more details in a few weeks. Unfortunately that drug is not a cure for his disease as there are still no cure, but it can make his remaining life better. I talked to a few parents that have been on the trial and they have seen great improvements in their child’s abilities/development, so hopefully it will do the same for Jagger, if we get approved!

The way back home also went OK, so maybe Jagger’s new car seat will make future travels a bit easier. One can only hope!!

Friday, April 13, 2012

Then and now

I am happy to report that Daddy remains Jagger's absolute favorite person and so he continues to prefer spending his nights snuggled up in daddy's arms. Yes, despite my best efforts to get him to sleep in his crib, daddy preferred to take Jaggy to bed instead of rocking or walking him to sleep. Well, now Jagger is so used to human contact, he refuses to be by himself ever. He literally is never ever alone. A lot of it too has to do with his disease and the fact that he cannot communicate. Maybe this way I finally get the king bed I always wanted:). We are so used to having Jagger in bed with us, now it actually would be weird if he slept somewhere else. I like hearing him snore and looking over in the middle of the night and seeing him cuddled up with daddy.
Below are pictures of Jagger and daddy, then and now. Not much has changed. Jaggy put on some pounds (so did daddy). Jaggy got more hair while daddy gained a few more gray ones.

When it rains it pours

Sorry it has been a while. Things have been pretty hectic here. Daddy was traveling a bit and we had a quite a lot of different appointments and arrangements to make. Things are never easy or simple when you have kids now add a child who needs some extra TLC and things just got 5 times more complicated. I am not complaining by all means but there is always so much to do and so little time and nothing is ever simple. I swear, for once I just wish things would happen without having to spend hours on it.Where do I begin????

Let's see. Plumber had to come to fix leaking bathroom sink and outside faucet so we can water our plants during the deadly summer heat. Second time someone had to come fix that faucet...arghh. AC guy came to check on AC. We learned our lesson since last year we almost had to replace the whole unit because it wasn't draining and flooding our attic. Now he comes twice a year for a maintenance check. Local company. Super nice and professional. Exterminator came to protect us against all those evil four legged critters trying to seek refuge from the summer heat in our humble home. Since daddy says "he doesn't do bugs" and says "I'll take Jagger to protect him" means I, mommy, have to deal with them. According to Sebastien, my years of travel to Africa have made me an expert on insect control or rather extermination..not sure this is a word:). So while he screams like a child, I get to deal with the giant roaches. Just for the record, I hate them as much as he does!!! So the exterminator was much welcomed. Then our nurse came a few times to check on Jagger and access his port..which takes time and is another ordeal. But he was an angel and our nurse knows what she is doing. We also had several doctors appointments. One with a new mito specialist, Dr. K, (I know all our doctor's names start with K). and we discussed the possibility of getting into a drug trial. More to that later.

Then we had to see Jagger's GI doc to discuss replacement of the PEG tube as the end piece stretches out over time and then leaks stomach content, mainly medicine and his food all over. We routinely have to change him, sheets, us etc. Turns out the 12fr tube they put in although collapsible cannot be taken out externally through the stoma. It can only be removed surgically. Which means he would have to be sedated and intubated. NO WAY as there is a 50/50 chance he will not be able to come off the ventilator after surgery. We will deal with the leaking longer although I think we have been attaching the feeding extension to the wrong opening (we were just doing what they showed us at the hospital) which stretches it and prevents the cap from closing tightly. It is pretty easy to replace but at $25 a piece, it is starting to get a bit costly if we have to replace it several times a week. We reached out to the manufacturer and they said to send the broken pieces for inspection and replacement. Maybe this way we'll be able to get some free replacements.  Also, if we had put in a 16fr we would have been able to take it out without surgery but apparently it hurts like hell. So not sure this would really be an option either. Again, for once we wish things were simple. But no!

We also met with a traveling pediatrician. As we prefer not to take Jagger anywhere (or rather he prefers it) we were looking for a pediatrician who does house calls. Looks like there is one here but of course this type of service is not covered by insurance. Again, having to weigh additional financial burden with convenience.

Then my car broke down so I had to take it to a garage to get a new battery installed. Jagger's wheelchair/stroller was broken again so the supplier sent a repairman to adjust/fix it. This time I had tried to adjust the head rest which was too low and then would no longer stay in place despite my best efforts to fix it myself. Again, time spent setting up the appointment and waiting for the guy. I also called the manufacturer to request they send me proper tools to adjust the chair. Well in order for them to do that they needed a serial number for the chair. Easy, right. Not so fast. The serial number is beneath the chair cushion under a support plate. arghh. So I spent another 15 minutes trying to yank out the cushion, finally found the number but was not able to put the cushion back without taking the chair apart again which had just been adjusted to fit Jagger. Another 45 minutes later, I finally had the chair back together. I am not sure what it is with this chair but I am really OCD about it. It is all crooked and it bothers me because Jagger then sits in it crooked. The guy who adjusted the chair the first time told me not to worry about aesthetics but rather focus on Jagger and how he is comfortable. Well the problem is that Jagger does not have trunk control so he cannot sit up straight and slouches to one side. I need this chair to support him and NOT to adjust to his crooked body. It is not that Jagger wants to sit that way but rather he does not have the strength to sit or support his body otherwise. Arrghh.

Daddy also traveled a bit which was torture for everyone. Jagger was screaming and kicking for 5 hours until 2 am. Likely a combination of no daddy and teething. I had to give routine valium, morphine and oxygen after which he finally settled at 2 am. Daddy is gone again till Sunday. Let's see what happens tonight and tomorrow. I already fear the worst.

I also tried to get an eye appointment for Jagger as there are several eye conditions associated with Leighs syndrome,  Next available is early June. Are you kidding me??? In addition to that we have to deal with insurance, hunting down his reflux medicine which costs an arm and a leg and is impossible to find (he only tolerates one specific kind prior attempts of switching to compounded or generic have failed miserably), dealing with our other mito specialists who does not return phone calls or emails but keeps sending us bills for visits we never had.

Another challenge is to find clothes for Jagger as he gets older and bigger. We found a solution for his pjs but during the day I prefer to dress him in onesies to cover his tube but the largest size most clothing stores carry is 24 months. With t-shirts his stomach is open and the tube keeps coming out resulting in Jagger grabbing it and potentially pulling it out. Sebastien and I also have two full time jobs and a house to take care of and the regular household, cleaning, laundry, shopping...
Thank goodness for the internet though. We do find a lot of stuff for him that way.

I keep asking myself what we did with our time prior to this?? Maybe we became more efficient??
Anyway, Jagger is doing ok. He continues to be the love of my life and my absolute favorite person even when daddy gets smiles and I get frowns:). I continue to give him 1001 kisses every day (1000 for today and 1 extra for tomorrow in case I can't give him any more kisses).

Jagger was trying on daddy's glasses. He was very happy daddy was sharing with him:).
He really does want to be like daddy. His hero.