Frustration

Yep, it's just one of those days. I really wish I had some large owner's manual for Emerson that told me how to weave through all of these questions that I have about her. Here's a quick update: A few weeks ago we had her appointment with her feed team and they were OK with our concoction of 16oz Good Start and 8 oz of Calcilo per day. They want me to start adding 2-4oz of yogurt per day to up her calcium intake. Her tested levels continue to come back high normal range. Well, they just called me and told me that her Vitamin D levels are dropping 19 to 16 (normal range is 20-100) so they want me to put her on a Vitamin D supplement called Drisdol. From everything I have read you do not want to put kids with WS on supplements that contain calcium or Vitamin D. I called her geneticist and she agreed with me and wrote a letter to the feed team explaining that we were going to keep things status quo. Sidenote: I too may be "fired" from the GI clinic soon since I never follow their recommendations... Anyway, am I off-base here? They also told me that at 1 year of age (next month) we need to have a talk about milk because apparently her need for calcium is going to double. When I read others blogs it seems like most are on some type of formula (with or without Calcilo) after their first birthday. Who should I be consulting on this? Trust me, I would love to go off the Calcilo since my insurance decided not to cover it. They just informed me that they would only cover it if she were being fed through a feeding tube. Ughhhhhhhh!! Emerson was also just put on Propanolol for her high blood pressure. Anyway, sorry for this exasperated post, but I just wish I knew what exactly to do for her.

Other than the above, life really has been going fine lately. Emerson seems to be doing pretty well, although her ears are still bugging her from her ear infection. Took her in and they are fluid-filled, but no longer infected. She continues to make some progress, she can now hold herself up on all fours for about 30 seconds, but doesn't seem to know how to coordinate crawling. I've started to hear some babbling when she cries (ma-ma-ma-ma) which I will take. Other than that we really haven't had too much change in development. But, as long as she is happy we are all happy. :)

Interestingly, I am currently reading a book called "Love You, Mean It". It is about 4 women whose husbands were killed in the WTC on 9/11. It is a book about their fall into deep despair and how the friendship and bond they formed with one another pulled them out of it. I really thought of all of you, my blogger friends, and how our friendship based on less than desirable circumstances is really helping me cope with this new path in life. It's not that I don't have great friends and family, but they don't always "get it". Recently, I was telling a girlfriend how Emerson can almost pull herself up. She put Emerson in front of a table expecting her to do it. I then had to tell her that she can pull herself up, propped on my leg, with her balance in place and legs and feet properly aligned, but then look at her go!!! I was very impressed, but I think my friend was thinking, "well, she's not really pulling herself up." Thank you all for being out there as my support system of people who "get it".