Wednesday, January 6, 2010

Who left the freezer open?


Greetings from the subarctic land of palm trees. Usually after Christmas, we make the trek back home to bask in our normal 70 degree sunny winter days, but not so this year. The freezing temps definitely do keep life interesting down here, as every couple of houses in the neighborhood either contain bedding material over tropical plants to keep them from dying or sprinklers spraying the lawn to create a southern-made icelawn.
The kids are getting over this current illness. Nathan did a lot better than Emma did with it...we are so thankful for that, as Emma was about as sick as we have ever seen her. Nate is still having some energy issues, but I wonder if the cold has anything to do with it. He has spent quite a bit of the past couple of days wrapped up in blankets in my arms, and I am loving every bit of it. He has been quite the doll lately, which is bringing back memories of why I love this age so much.
Over Christmas, the little guy's speech just exploded...he can now repeat most of the words we ask him, and he has started talking on his own a lot without prompting. Sometimes when I am driving, I will hear a teeny wittle voice pipe up from behind my seat saying "Mama, hand. Mama, hand." to which I contort my not-so-limber body and stretch my Go-Go-Gadget arm behind the seat to hold the soft hand of my little boy. Love it...simply love it.
Nate had a GI appt yesterday, and it went pretty well. Unfortunately, he's still having a tough time with weight, but after a long talk with our GI doc, we can still wait a bit longer before we need to make any decisions regarding a tube. We are aware that as Nate's motility decreases, he will eventually need a feeding tube to make up for the calories he isn't able to consume by mouth. Our GI told us yesterday that when this does happen, we will need to skip the g-tube altogether and go directly to a G-J tube which feeds into the jejunum (the middle portion of the small intestine) and vent through the g-portion of the tube. With this type of tube, it is a bit more hardware and he will only be able to receive drip feeds and no boluses, so we are so very happy that our docs are willing to wait a bit longer before we truly need to make this decision. He has to go back to that clinic every 2 months so they can keep close tabs on how his gut is doing.

Honestly though, he is doing really really well right now. He's sweet and loving and just so much fun these days.

3 comments:

wandaconner on January 7, 2010 at 6:39 PM said...

I sure miss my little buddy!
Wandy

Heidi on January 9, 2010 at 10:33 PM said...

His face always melts my heart. love, love, love his smile.

Im glad the gj isnt imminent at this point and you still have time. Poor little guy, and so many tubes! I pray he continues to gain and you dont have to face this decision yet. Just wanted to add, although I know our mito kids can look so different, Jacks motility hasnt worsen...if that means anything. At age 2-3 I remember thinking his gut wouldnt be working at all by age 5! So just keep that in mind, sometimes these things dont worsen and even improve with age. Continued prayers, and hoping these fevers pass soon! love ya-
Heidi & Jack 6.
(btw, youre experiencing our Seattle weather!)

Mighty Mito Mom on March 10, 2011 at 3:34 PM said...

Did they explain WHY you would have to go to a GJ rather than just the G? We do the G-tube 24/7 due to reflux and motility problems. She can only take 28ml/hr but is still very slowly gaining on that low, low dose. When she stops gaining we'll go to the gj-tube.

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