Friday, February 26, 2010

And so it begins...

We have entered Teething territory. This evening, while playing with Delilah, I noticed a little white sliver on her lower gum. After closer inspection I came to realize that this sliver is her very first tooth. And let me be the first to tell you it is VERY sharp. I cannot believe it. She seems to young for this to start happening. I know she is 8 months old, but I was really hoping this would be delayed until Daddy gets home. No such luck. I am excited though. I know it won't be easy to deal with, but I can't wait for all the toothy grins we will get to see.

Now on to the information I am sure you are all eager to hear about; we had a great visit with Dr. Miller on Monday. She is absolutely wonderful and I am so glad she is Delilah's doctor. First, Delilah is now weighting in at a whopping 15 pounds 2 ounces and 26.75 inches long. Dr. Miller says this is wonderful. Apparently there are several different Stages for PWS, and Delilah is in Stage 1b which is the golden stage. The next stage, 2a, will be when she starts gaining excessive weight for no reason; i.e. no change in diet or activity. Her body will just start to absorb more of the calories then before. This can happen as soon as 18 months or as late as 4 years. It just depends on the child. Luckily she has a nutritionist/dietician on staff who has figured out a precise diet that works wonderfully for PWS children. It is such a blessing to have such wonderfully specialized people to help us fight the weight gain. I cannot begin to tell you how thankful I am to have found Dr. Miller for Delilah.

We will also be starting Delilah on Carnotine, a supplement to help with muscle development. Dr. Miller believes she may have a deficiency based on watching her eat her baby food. Delilah tends to get droopy eyed while eating, but will wake wide up once finished with bottle/food. She said that we should see a noticeable difference in her within 24 hours. She should be doing something she has never done before. I am hoping for sitting on her own. She is trying, but not quite there.

The stage I dread the most is stage 2b. It is during this stage that she will start the food seeking and insatiable appetite. Luckily, Dr. Miller has recently come across a drug that should help decrease the food interest. It is a drug commonly used with type 2 diabetics and it only seems to work with the little girls. It is unfortunate that it doesn't work for the little boys, but hopefully one day something will be found.

All in all it was a wonderful first meeting. We learned so much and I feel so much better about the future for Delilah. Before this meeting I had so many questions about what will be, but now I feel more confident and reassured that Delilah will be able to lead a somewhat "normal" life. We will continue working with her via emails and phone calls,  and we will be visiting her every six months.

Well, that is all for this post. I will try to post some pictures soon.

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