Tuesday, December 11, 2007

Saying Goodbye

Unfortunately, this week we had to say goodbye to Charlotte's Occupational Therapist. She works through Missouri First Steps, and is unable to continue doing "home visits" like we have. We are very sad to be loosing Jennifer because she has seen us through many hard times and worked so well with Charlotte. Charlotte will be continuing OT, just with a different therapist.

Now for some very funny pictures. Yesterday, we got pictures taken as a family and Charlotte had some individual pictures taken. But as we were getting ready to go, and I was picking out her clothes, she decided to help me with the laundry that still needed put away. It was so cute seeing her explore and pull out things in the basket.

When all was said and done, she actually ended up inside the basket. I was having a great time capturing some funny pictures myself yesterday.

On a more serious note, today was her GI appointment. The narrowed down version of the story is that we have 3 weeks to meet our goal of 12 oz of weight gain. We are doing everything we can to beef up any food she takes in. Chris and I made an entire excel spreadsheet to write all of the caloric intake down from each meal so the Dr.'s can see what is going on. To be honest, it isn't always that we aren't feeding her high calorie stuff, we ARE! The problem sometimes is that she just doesn't want it... :( So, the numbers will show the doctors what they need to know, and in the mean time, we have a steep goal to meet since in the past 1 1/2 month, she has only gained 7 oz. But, we are doing everything we can. We have switched her juice that was in her sippy cup to pediasure, put butter in almost everything we can, and borrowed Sara's food grinder to give her more "flavorful" food that we eat since that seems to be what she likes most. We give her ice cream, and mashed potatoes, cheese, gravy on whatever we can add gravy to. We give her whatever has a lot of calories in it, but also have to watch that things keep moving south if you know what I mean. Anyway, the point is she gets what she will eat, and as much of it. I try to balance the meals with a little bit of "self feeding" and foods that will help her continue to go to the bathroom normally. Just think of how you and I feel when we have had a lot of calories...Thanksgiving ring a bell to anyone?
The real question is WHY? Why does she not have an appetite? Why do we have to concentrate her formula so much? Why does she not seem hungry in the morning after sleeping 12 hours!? And most importantly, why are we seeing such little improvement in her weight, despite the closure of the hole in her heart, and all of the other efforts we are doing. This, we don't know yet.
Right now, we are focusing on meeting our goal of 12 oz in 3 weeks, and we also will have an upper GI done sometime in that time period to be sure Charlotte's GI tract anatomy is normal. I know you are wondering what happens if we do not meet the goal.... unfortunately, that means she may have to have an NG tube, and may need further testing to rule out any metabolic disorders that prevent her from gaining weight.

So, today, Charlotte was 15# 7oz, and was 28" long. Hopefully we succeed in the next 3 weeks!

The Hawn Family

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