Saturday, June 16, 2007

June pictures & Avery's 2-month check-up

Avery had her 2-month check-up on Friday. She is now 11 pounds 5 ounces. She is the smallest of the 3 girls so far, but she has had a really rough start (remember?!). We are still discussing med options for Shelby. That's all for now. Enjoy the pictures!

Thursday, June 14, 2007

Sorry for the late update

Geez, I should be in bed right now, but I feel so bad for taking so long to let you all know that Avery's MRI came back normal. All the spots of bleeding that they saw before have resolved!!!! Thank you God and thank you everyone for your prayers for her. She is being a bit stubborn on the whole formula-front, though. No, really, she can't help having a milk allergy. She could not tolerate the hypoallergenic formula so now she is taking Neocate, an amino-acid based formula that is available by prescription only. So far, so good. She will also be starting Axid for GERD. Fun, fun, fun. Another kid on meds. Tomorrow she has her 2-month check-up so I'll post more and pictures after that.

I guess it is up to us if we want to try to treat Shelby with medication for the elevated ammonia. We are discussing it still. Also, her ultrasound mentioned a gallbladder. Uh, hello, we were told that was removed during her Kasai. So what is the radiologist seeing then....the nurse in Chicago is following up on that one.

Riley, Riley, Riley....we went to the library on Tuesday only to have her finish all her books by the end of the day. Did I mention she is reading at a 4th grade level (just a reminder she just completed 1st grade)! Back to the library again tomorrow. She is extra-cute now, too, as she lost another tooth!

Please follow the link at the right to my Mom's blog and watch for updates on my Dad. He just spent 6 days in the hospital with a nasty infection. Please send prayers his way for a full and speedy recovery.

I hope to update this weekend.

Wednesday, June 06, 2007

Shelby's check-up in Chicago & Avery's newest

Yesterday Shelby had an ultrasound & liver clinic in Chicago. The ultrasound was good. The cyst has not grown since February although it is large to begin with. It measures 5 cm in diameter. They'll just keep an eye on it with regular ultrasounds. Her liver doctor wants to do an upper endoscopy on her this summer to check for varices in her esophagus as she has more spider veins on her face. Those indicate that her portal hypertension is worsening. Her labs looked pretty good, but her ammonia is up. That is of concern because we have seen some rather unpleasant behavior changes in Shelby since March. Could it be new baby in the family or just a phase? Yes, but an elevated ammonia level can cause behavior trouble, too. I'm waiting to hear back from them to see if they want to treat her with medication to try to lower her ammonia.

We found out this week that Avery has a milk protein allergy. Now she is on a hypoallergenic formula, but she does not like it and is not taking it well. It is even more of a struggle now to feed her. Ugh! Today she had her follow-up MRI. She did really well again. Hopefully we'll have those results this week yet.

I'll update when I have more information. Take care everyone !