Upset Tummy

Daniel (not Sofia) has been having some runny diapers and in general a not happy tummy for the last few days. We've switched him to a soy-based formula and some culturelle and are trying to make things better but unfortunately he's been very gassy and unhappy and so has been getting up a lot in the night.

Sofia is eating better and is much happier. It seems like the gas problem is resolved for now. However she is still eating a bit below her target and rather than risk anything again we are going forward w/ her g-tube surgery on Wed. That means she will probably be in the hospital for her birthday so we may end up celebrating the week after.

On the bright side though she is now on 24-hour CPAP starting today! YAY!

More on Eating...

Daniel can now eat finger foods including Cheerios - although he sometimes has trouble getting it to his mouth!



Although Sofia doesn't like drinking a lot of milk lately, she did enjoy the teething cookies that Mommy baked (from Grandmommy's recipe). She now has about 5 teeth!

No Weight Gain

Sofia grew 5/8ths of an inch, but gained almost no weight over the past month. We met with her pulmonologists and the pediatric surgeon yesterday. They fit her in for an upper GI test, otherwise known as a swallow study. She was not too happy about drinking the barium liquid. Here she is in her hospital gown (or Jedi outfit?) before the test. We have a tentative date scheduled for the g-tube, and the ENT doctors will scope her trachea at the same time.

Not eating...

For the past 3 or 4 days Sofia has not been eating well. She's had one particularly bad day where she ate about half of what she was supposed to. She's also been very, very gassy which we think is the cause of the not eating. So we've toned down the amount of neosure, switched to dr brown bottles (supposedly good for gas) and a few times tried to give her some extra through a tube. This also had the side effect of venting off A LOT of gas but of course really upset her.

Unfortunately this has caused her to lose some weight, as of yesterday she was back to 14.3 lbs which is basically no gain for 3 weeks.

So her CPAP trials are continuing but not increasing past 18hrs/day. I think she's fine in her lungs but of course the Drs are nervous and want to hold steady.

The big decision will come on Mon when we bring her to Yale for a checkup.

I (Dad) am very reluctant to put in a G-tube, especially this late in the game with her trach. As simple as the Drs say it is, there are lots of additional complications = risk and cost (it will set back her oral feeding) that I don't think make sense. And maybe all of this is a normal baby not eating thing which for her is a big deal but doesn't merit overreaction.

A Visit with Cousin Layla

Sofia and Daniel visited with cousin Layla and Aunt Becky on Thursday and Friday. Here the three of them are in Sofia's crib.

Here are Daniel and Layla playing together and....

eating together


Here are Sofia and Layla together

Bee?

Or rather wasps as it turns out that they are yellowjackets. We found their nest. It is about 40 feet away from the sliding door by Sofia which explains why they invaded a few days back.

Daddy bombed it with some RAID and it also conveniently poured last night. There are some stragglers today and Dad will reattack them tonight!

Somebody has a new haircut

And is also modeling his Hard Rock Cafe onesie (thanks great Uncle John).

Sofia continues to do well on CPAP, she's up to 4 hours 2x a day right now. And she's also growing at a better rate again. Or at least it says so on our scale, which we recently replaced on warranty because the previous one broke. She's at 14.4 lbs now and Daniel is just about 15. So she's still got more growing to do!

Bee Attack

Somehow last night a whole bunch of bees got into our family room. It got a little crazy for a while as we evacuated Daniel and covered up Sofia and then proceeded to kill the bees. Luckily the bees were attracted to the halogen lamp and largely killed themselves but we still had to chase down a lot of them one by one. And this morning we found a few stragglers that were hiding.

Still not sure why yesterday of all days they decided to sneak in.

Another scare

Sat night Sofia stopped breathing again. This time everybody reacted a lot faster so she was back and normal before 911 even got here but just in case we took her to the hospital. They did a chest xray and other tests and everything came back normal so I declined to have her transferred to Yale which would've only exposed her to swine flu and other bad stuff.

As it turns out the Drs don't have any real ideas on what may be the cause. Most likely is a mucus plug which is one of those things that just happens to kids w/ trachs. Still though her secretions were thin before hand. Also possible is aspiration related to reflux or some other kind of spasm. again pretty unlikely.

the drs are going to consult w/ a GI specialist to see if they could shed some light but really the best game plan is to have highly trained, ready to act nurses and mommy and daddy.

Featuring...