Thursday, July 19, 2007

July Happenings

I know, I know, real exciting title, eh?! There seems to be so many things going on that I just can't wrap it up in a cohesive title. Let's see where to start....Riley is doing wonderful. If she could live under the water or grow gills she would be one happy girl. She is swimming amazingly well and seems so grown up for only 7 1/2. Where did my baby go?

Avery is growing! She has a beautiful smile and once you get her talking she seems to have alot to say. She is really an easy-going baby and has been sleeping 8-9 hour stretches at night for about 7 weeks now. Trust me, we know how lucky we are to have a good sleeper. The other two didn't seem to value sleep like Avery does. She still has her milk protein allergy, but is feeding much, much better than she used to. Her doctor probably won't even start to see if she's outgrown that until she's about 9 months old.

Shelby, Shelby, dear sweet huge-hearted Shelby! Where to begin? As you know in previous posts I have written about her just not being herself and her elevated ammonia level. This past weekend we traveled to Bloomington for my cousin Lisa's wedding. Riley & Shelby were very excited to get all dressed up and stay in a hotel. They did lots of swimming in an over-clorinated pool thus Shelby (as she didn't have goggles like her sister) ended up with red, burning eyes and that was just the straw to break the camel's back. She was tired, her eyes hurt, she didn't get to see enough of her "boyfriend" (my cousin Erich), and things in her world were just not right. The poor little girl cried for about 45 minutes before the wedding and then near the end of the wedding whispered to her Grammie that she couldn't see. Her eyes were burning so bad and that sent her into another crying spell that lasted another 30 minutes or so. Yes, you say, there were lots of factors playing into why she would be so upset, but, trust me, as her Mama, things just aren't right with her and it kills me that I just can't make it all better. We did choose to start treating her with Lactulose for her elevated ammonia level, but I don't know if that's making a difference. We met with her local GI this week and he said that portal hypertension alone can cause mood changes, attention problems, and learning difficulties as her liver is just not filtering out all the toxins in her system and that affects brain function. He suggested we talk to Chicago to see if they want to do testing on her to see if she'll need some tutoring or extra help this year in Kindergarten. On August 7th we'll be in Chicago for her upper endoscopy so we'll have a nice, long talk with them then. By the way, the "gallbladder" seen on the ultrasound really is another cyst. Her surgeon looked back in her records and did confirm that he removed her gallbladder during her Kasai. The radiologist just didn't recognize it as a cyst.

On the right-hand side I have put information about upcoming fundraisers. I will continue to keep that current so please check it out. Please continue to hold my dear Shelby in your prayers. Enjoy the pictures!