sweetie gwirl

As Benson so lovingly calls his sister..


April has been a wonderful month. My birthday was at the end of March and although it began with a trip to the Urgent Care at 2 a.m., it was so much better than last year. Last year I was worried sick about my sweet little girl and her life. I didn't know if my days were numbered with her, what her future held.. I was stressed beyond belief having just brought her home, but realizing really quick that something was still very not right with her, and she was admitted again a few days later. It was such a crazy time, and I thought about that a lot on my birthday. It was the best gift for me to see how far she's come, and to have the overall feeling of the day be so different. The urgent care visit after she screamed for 3 hours turned out to just be an ear infection. Thank goodness. It's amazing to just get that news, something so normal as an ear infection. We'll take it!

This month she learned how to pull up on everything.. everytime I go into her room to get her in the morning when she wakes up or after her nap she's standing up, waiting for me. It's so cute!! She is scooching across the room, cruising along the furniture, and wants to walk (with my help) constantly. She's so miniature it's almost funny to see..




We havn't had a cardiology apt. in about a month, but last check up went well. Her endocrinology apt. was monday and he was very pleased with her 16 lb 10 ounce little frame. At least she's still following her own curve, however off the charts that may be.




She is eating so much better lately.. It's still not by any means her favorite thing to do, but she is taking in orally more and more every week. She eats anywhere from 1-4 baby foods a day, depending on the day, and loves to munch on little finger foods. Her problem is quantity..she will take a few bites of everything and anything, but just dosn't want to eat a whole lot of anything. So I let her eat what she wants, then we just put the rest right into her tummy. SOmetimes it's almost the whole feed, and sometimes it's just a tiny bit of food. She drinks about 5-8 ounces a day, so we're still having to give her most of her liquid through the tube. It's great progress tho, it's been amazing to see her improve so quickly. I always knew that darn tube was the problem. I can clearly see now that it hurt her to swallow. I am SO glad we went ahead with the mickey button. It has changed EVERYTHING around here. Not only is Bela so much happier, but there is a different feeling in our home.. no more stress or crying over eating or reinserting it. I knew things would be different, but I didn't know how much better it would really be.




Some pics from Easter Sunday.. She only lasted the first hour as usual, but at least we got to put her in her dress!




Bela and her buddy Mark at the St. Joe's 'heart picnic' in pheonix..



Happy Spring!