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.

Sunday, February 14, 2010

Happy Valentine's Day 2010

Here's some pictures of Delilah's first Valentine's Day. Not a big 'to do' without Johnny here, but I did dress her up for the occasion.

We will be traveling to Florida Thursday to see Dr. Miller. I can't wait to meet her. She has been such a blessing in our lives. With all the stress we have been dealing with concerning TriCare, she has been able to lighten our load. I will keep you all posted on the visit. My mother will be coming with us, so there is no doubt that there will be plenty of note taking. 

Monday, February 1, 2010

7-Month Update...sorry so late

I'm sorry I haven't updated lately. I am having a problem with motivation...I don't seem to have any.

Delilah is now 7 months old. I can hardly believe it. We had a weight check and she came in at 13 pounds 12 ounces. She is gaining about an ounce a day, super glad to hear. She also measured in at 26.25 inches long. This makes finding clothes that fit her very difficult. Length wise she fits into 3-6month clothes, but width wise she is still in 0-3months. I guess I will be safety pinning her pants again. Luckily dress season is just around the corner...hopefully.

Her biggest achievement happened in Therapy last Wednesday. She rolled from tummy to back all by herself, 3 times!!! I was so excited. I actually teared up. Even Sally was blown away. The progress she has been making is extraordinary. She loves tummy time now. She lifts her head high and will hold it, until she decides to roll over. She is trying very hard to roll from back to tummy. Soon! Still having issues figuring out what to do with the arms. She also likes sitting up more. I put her in her Bumbo chair or high chair and she beats on her little piano.

Her personality is beginning to really shine through. She is always smiling and babbling to herself. Every morning I wake up to her babbling up to the butterflies that hang over her crib. She likes to make noises at me while she is eating. She is also grabbing at her spoon and holding her bottle all on her own. This makes meal time very messy, but I guess I have to get used to that.

I can't say this enough...I love this little girl.