Friday, August 17, 2007

Long time, no see.

I know it's been forever and a day since I blogged, but really there hasn't been much going on besides this therapy and that. This appointment and that. The kids are doing well. Caden starts OT again when school starts. Lily is just as charming as always and it's been confirmed that she really was meant to be an only child. ;) And Emma got her first haircut which makes her look about 2 years old. Nothing major going on...until NOW!

I enjoyed being a stay at home mom for the better part of the past 5 years but I really felt like something was missing. I missed the adult interaction, I wasn't feeling AS fulfilled and quite frankly I think the kids were getting bored with me as well. I ended up going back to work at our business. My good friend Allie is our live in nanny which works out well. The kids adore her and it's a renewed energy in our home. I feel like our time as a family together is more productive and all around just better. Maybe because we appreciate it more since there is less of it. I'm enjoying working and the company is benefiting and the kids are enjoying their new buddy.

On an even bigger note we've begun the TUBE WEANING process for Emma. It's amazing. I debated whether to post or not on the off chance of jinxing it, but decided that it just may help somebody else out there in our same position. For the past few months Emma has been off all reflux meds and showing very little to no signs of reflux. We've tinkered with food here and there and half heartily began to tube wean before. Our thoughts were if we decreased tube feedings, instinct would kick in and she would eat. Wrong, she just lost weight, got frustrated, and we got frustrated as well. so we held off. We had some more testing done which has ruled out any remaining medical conditions which would prevent her from eating. It appears that her medical issues around eating are gone (at least for now). YAY! So we made an appointment with OT. Unfortunately, Kaiser doesn't really offer as intensive feeding therapy as she needs but her OT is willing to call me daily for reports, give advice etc. by phone. Which is cheaper than the $6,000+ out of pocket elsewhere.

So, Tuesday we had the appt. and we booth agreed that really she has the ability to eat and the will to eat but she's just not hungry enough. The best course of action would be to reduce (drastically) the amount of tube feedings to get her to eat more in the day. Just like last time. Unlike last time, we will allow her to lose some weight and see what she does and hopefully eventually she'll take more and more. this method models closely what an intensive inpatient program would do. The first night we cut her tube feedings in half. She was getting 3 cans of pediasure so we cut it down to 1 1/2. We did that for a few nights, than went own to 1. It's worked so far. She's eating 3 meals a day. Not A LOT, but for her it's a HUGE improvement. Last night she only got 1 can overnight. Today she ate a lot more. for breakfast she had a 1/4 waffle, 3 ounces of pediasure, and a saltine cracker. For lunch she had a box of juice (4 ounces), a half can of gerber graduates macaroni and cheese, for dinner we went out to dinner and she ate about a 1/2 cup of spaghetti, a french fry, and drank 2 1/2 ounces of pediasure. This is HUGE!!! She fell asleep in the car so we decided tonight was the night not to tube feed her overnight and begin our war against the tube.

I thought this day would never come. It's scary and invigorating all at the same time. I'm afraid to get my hopes up and then have to watch her backslide. I'm trying to stay guarded but it's so hard after day in and day out of feeding my baby through a tube and now finally seeing the light at the end of the tunnel. No matter what though, this is a step in the positive direction and we now know that it's truly only a matter of time before she will no longer dependant on her tube. It's not a matter of if, but a matter of when.

I will try and update at least once a week with her weight and her progress. On Monday, 8/13/07 she weighed in at 23 lbs. 7 1/2 oz. I will weigh her on Monday and hopefully she will maintain her weight and possibly gain and not lose! Continued prayers are always appreciated as always!


Kelly said...

I have checked your site faithfully for the past 4 months hoping for an update and pics! Man have the kids grown! And yay on the progress with Emma! :)

Lena said...

Oh my goodness, my heart just swelled about 10 times its normal size with happiness for you guys and Emma!!! YAY!!!!!!! :) :)

loraine said...

I know this comment is a bit late but, I still say Caden looks like Sean. :-)))))