Tuesday, October 20, 2009

Weight Check

Ava is still not gaining weight. We are going to hold off on any intervention (IE: adding cereal to her expressed milk) until we get some results back since we just don't know if it's a preemie issue or a mitochondrial one. I did bring up the "tight frenulum" issue with the pediatrician. He jumped on it and agreed that she should have it clipped.

So I emailed the ENT to see what he thought. His initial response was that she doesn't need it done as she would have had issues since birth. Ummm, she has. So since I have nothing better to do, I will call the pediatrician and see if he can champion Ava's cause. Which I think he will since he's going above and beyond on everything else I talk to him about.

Case in point: I talked to him about Ava's labs last week. I told him that while I appreciated his input and the doctors at CHOP, I would really like to know what the geneticist who saw Eric thought as we trust him. Today he told me he called that doctor who was not worried about her elevated lactate level as it was a send out lab and there is lots of room for error.

My current theory: She is using up her calories trying to eat. (Have I mentioned she is slow?) Slow and persistent. I think because she is tongue-tied she doesn't have enough thrust to be efficient in her sucking- either on breast or bottle. I mentioned this theory to a lactation consultant friend of mine who agrees it has potential. So I want to give her a fighting chance. Sometimes we have to rule things out to rule things in.

I should have gone to medical school. Really though, all Moms should.

Our pediatrician tells me she is acting like a preemie. I am begining to believe him. It's taking time, but I'm getting there.

Life rolls on. Alexa made breakfast for her sisters today so I could finish feeding Ava. Elaina wants to dance a "Princess Hustle" and thinks she can. (That is just plain entertainment). Wiggle wiggle, shake shake- "See that is just how I do it." Alexa rolls on the floor in some sort of dance fashion ( I use the term dance loosely here) and then reports "I think I'm totally ready for Dancing in the Stars". Emily just wants to take ballerina lessons to perfect her Argentine Tango. Ava, who got an RSV vaccination today, woke up after the trauma and held her head better than we've seen. Alexa noticed and said, "she's getting stronger!". That child is pulling for her sister and just wants her to be OK.

Tonight I was actually able to paint the girls names on their book bags for school. They were so excited. I had them each choose the colors they wanted each letter to be. Then I had them tell me what to paint on the book bags. Emily and Alexa kept telling me that I was doing a great job and that I am an artist. I then decided to decorate Elaina's diaper bag (it's canvas too). Oh she was so thrilled. It was so nice to hang out with them like that. Daddy was feeding poky pants.

So now Alexa's book bag has puffy paint name, sun, smiley face, sunflower with grass, and an apple. Emily's boasts a sun, smiley face, her name and a pink flower. Elaina requested a spider, but changed her mind. She settled on her name (which I initially totally spelled wrong. Am I tired?), a smiley face, lots of colors, and a ladybug.

2 comments:

  1. Amy, I found your blog through my husband's Facebook page. It sounds as if we have been on similar paths over these years in some ways. We had a son who died of SIDS in 2004 and a subsequent daughter with autism. (We also have a typical 7-year-old son.) My prayers are with you. The wait for information sounds excruciating. If you ever want to contact me offline, please e-mail me at soderg@hotmail.com. The Lord is good to all who call on Him. -- From Becky (Beinlich) Sodergren

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  2. Amy, jude had his frenulum cut when he was really little, i'm so glad we did. Dr. Rafetto did the procedure and is the best (he goes to BVBC), I highly recommend him. Lifting you guys up in prayer! =) -jenna

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