Happy Birthday Boo-Boo (a look back at the last 2 years)

So Jagger turned 2 last Friday, that on its own is an amazing accomplishment.

What a big boy he has become and he even broke 25 lbs yesterday, that is amazing considering that he was stuck at 15 lbs for almost 7 months

He has one of the worst/most severe type of Mitochondrial disease, and I know several families with the same disease that lost their children before 2 years old, so we are bless to still have him with us.

But if you told me in January that he will see his second Birthday, I would have not believe you.

His pain was so bad and not controllable that we were adviced to get our parents to town to see him one last time, so on a short notice, we got my parent and brother to fly from France and Annett parents to drive from New York.

And by time my parents got here, he was doing better and was discharged a day later, so that was great and unexpected but we did dodge a bullet.

We still struggle with his pain despite the incredible amount of medication he is taking, and I am not sure if we will ever able to avoid pain crisis, but at least we can try to make them shorter and more manageable.

So let’s take a look back (in numbers) at the last 2 years with our little boo:

11  trips to the ER

10   hospital admission/stay (including 6  In ICU)

60  days in the hospital (including 30 days in ICU), roughly 11.5% of his life has been spend in hospital L

5   days on a ventilator

2   Surgeries (and that number is still low probably because he can’t have any more anesthesia without a 50-50 risk of not making it)

85  days with a NG tube (feeding tube in his nose. We switch to a G tube directly in his stomach on August 17^th 2011)

63  doctor and Therapist visit outside of our home (and that stopped on December 1^st, 2011 when he was put on hospice care, now we only go see Mito specialist a few times a year)

2 weekly therapy visits in our home (PT and OT)

11  daily medications  (plus some as needed for pain

31   doses of those medications he has to takes each day (plus some as needed meds for pain)

18-20 numbers of hours he sleeps a day (and the remaining 4-6 hours he is usually in pain for at least half of those)

And for the crazy number of the day, in his first 2 years of  life, Jagger medical bills (as of September 1^st) are: $510,270, no this is not a Typo, over HALF a MILLION DOLLARS. Now of course, that is not the amount we paid since we have insurance and Deeming Waiver, but we still had to pay a portion, it is not free even with good insurance!! I’m still shock at the number, this is absolutely INSANE that healthcare would be so expensive!!

And on the bright side:

2 visits to Disney (never to the park as he only has enough energy to be up 1 hour at the time during the day, but he still got to meet Mickey)

                                                                                                                                 

So as you can see, it is a daily struggle (and a lot of work) just to keep him alive, but it’s also a honor to do all we can to make his short time on his earth as happy and fun as possible.

I honestly did not think it was possible to love someone as much as I love my Jaggy, and his perseverance, positive attitude and happiness taught me (and everyone around him) so much. For a non verbal, non mobile kid, he definitely  know about to brighten a room and make everyone around him happy and smiley.

We really don’t know how many more birthdays (if any) we will have with him, so we just take it one day at the time, and make the most of each moment he is awake and we spend with him (as cliché as it may sound! LOL)

Such a big boy!!