June 29th, 2008

Kinnick's G-tube has been leak free at night for the past couple of weeks.  She has had minimal leaking during the day.  Most of the leaking during the day is due to stress when someone new is in the home.  This can be a Rainbow's employee (service provider for PT, OT, VT, etc.), a new nurse, or a friend or family member.  She's learned to relieve herself around the stoma site when her stomach is too full.  She has such a small tummy.  We have a hard time getting any more then 4 oz of food and 2 oz of juice per feed.  If she gets too full, she just pushes the food out around the stoma (G-tube entrance).  The last couple of days I've increased her to 5 oz of food and 2 oz of juice per feed.  She's been handling it pretty good.  She still gets 16 oz of formula at night.  The goal is to get all of the calories and fluids moved to days by mouth so we can get rid of the G-tube.  It's a slow process, but we are well on our way.  She needs 720 calories per day.  We have to count every single calorie that goes into her.  We're finally hitting the full 720 calories.  We were told to expect a weight loss when converting to baby food.  Well, she did lose weight.  She is now 15 lb 14.5 oz.  She's such a tiny little thing.  Once we are able to increase her feeds, I think her weight will increase.  We even add 1 tsp of butter to her vegetables 1 x per day.  This adds 50 calories and tastes good.  Since we added the butter, we've noticed a weight increase.  I'm not sure how much she actually lost, but we can tell that she's started gaining some weight back.

Carver still doesn't like eating.  We're lucky to get 3 bites in per feed and he just lets the juice run back out of his mouth.  He's gaining like a champ.  His last weight was 19 lbs even.  We're still shooting for 20 lbs by next month so he can get his new ears.  Hopefully his eating will improve with his new ears.  I also think the Fundo is bothering him.   It takes about 6 months for the Fundo and G-tube to heal.  Hopefully we'll see a change in September.  This will mark 6 months from the date he got the Fundo and G-tube.

We're really starting to get bored staying in the house all of the time.  We're going to start physical therapy in the pool in July.  We're taking a class with Rainbows at the YMCA and our Rainbows PT is going to start doing our PT at our neighborhood pool.  We're excited about getting out and doing something new.  I bought the cutest matching swimsuits for the kiddos.  I'll post a picture of them wearing their new suits and matching hats.

Kinnick and Carver are both still on 1/8 lt of oxygen.  I tried to reduce Kinnick to 1/16 lt, but she didn't seem to handle it.  Her heart rate went up slightly.   I'm going to wait a couple more weeks and try again.  Carver isn't ready for a change, yet.  He still has a lot of strange de-sats while sleeping.  I'm supposed to talk to the pulmonologist about this at our next visit.