Update on Alex and our life at CHOP

We checked in to CHOP at 4:00 p.m on Wednesday and will stay here till Monday at the earliest. It's been very busy here as I am sure you can imagine. So far the kidney ultrasound came back the same as the last kidney ultrasound Alex had done - this means her kidney is not causing the vomiting. Blood work is normal. The gastric emptying study came back normal as well (except for reflux which we knew she has and takes medicine for). Alex has been on IV fluids and drink/food by mouth till yesterday; meaning: if she wanted to have her juice and graham cracker she could have it. The IV came out last light and yesterday at 8:00 p.m. (for Alexandria's overnight feed) we began a new formula. This formula is for kids with allergies and/or very sensitive bellies. Alex typically begins vomiting her feeds 2 or 3 days after begining a new formula so we will be saying here through Sunday to see if she tolerates this formula. If so, and if everything else goes well, we will be home by Christmas. If not, we may be looking at a few more tests, etc. and most likely won't be home till after the Holidays. On top of the feeding dilemma Alex ended up with a yeast infection from the Amoxcicillin she was and still is taking for her ear infection. She is being treated for that here with a topical cream - the cream is working wonders! Alexandria's Mic-Key button has really been bothering her for some time and she "freaks out" if anyone goes near it. I thought it was the granulation tissue but apparently granulation tissue is not painful. They think it is an internal pain and that it may be related to the feeds; if Alex in fact has a milk/food allergy. The rational behind it is that if the inside of her stomach is swollen and tender due to allergy or sensitivity then it would make the internal issue around the g-tube hurt if the button is touched or moved on the outside. It could also be gas...Or an allergy to the material the tube is made of. The surgeon who put in Alexandria's Mic-Key button will be stopping by today to take a look. Alex also has been spiking high fevers off and on since we got here 101.5 - 103.1. They took a chest x-ray to make sure Alex does not have pneumonia. The chest x-ray is clear and perfectly normal. They are going to check her ears to makes sure the ear infection is almost gone or all gone and do a mouth swab to see if she is fighting off a virus to try and get to the bottom of the mysterious high fevers. Because Alex has a runny nose and fever she is not allowed out of her room without a face mask and every medical personnel who comes into the room has to wear a mask, a special coat and gloves that get thrown away before the folks leave our room. This is because they don't want to give Alexandria's cold to any other kids who are here. Alex is also not allowed in the play room or any other common rooms here due to her cold. That's okay. She mostly wants to be held and hand with her Mommy anyway. And she is sleeping a lot.

Something cute. Alex does not like food...the only thing she will eat really is a graham cracker. She calls it "cookie". Last night Steve and I were eating pizza and french fries and Alex wanted to try a french fry. She love loved it! And must have eaten like 5 of them! She looked so cute eating them!... :)

Thank you for your prayers!