100th Post

It is unbelievable to me how far we have come since the very first post. From a floppy, ‘failure to thrive’ infant in the NICU, to a constantly moving, happy toddler. Delilah is constantly proving to us just how amazing she really is. Everyday we see something new and exciting. Just today she signed ‘fish’ while playing with a stuffed fish. Something very simple to most, but monumental to us. It shows that she “get’s it”, she understands. 


I must admit that sometimes I do worry about her developmental delays. I know that she will get there, but it can be hard to watch her struggle. For instance, stacking blocks. We practice this over and over and it can be discouraging when she only wants to knock them down. Then, out of the blue, I look down and she is stacking a block on her own. She did it, it just took her a little longer. 

Walking is the one thing that gets me down the most. I want her to walk so bad, because she wants to walk. I can see it in her face. She is getting there. She is cruising along the furniture and she is starting to let go and stand, unassisted, for a few seconds at a time. I know she will eventually walk, but the waiting is hard. I guess what really bothers me about it is knowing she can’t keep up with other children her own age. 

A couple months ago I joined a mom’s group in hopes of finding some friends for the both of us. I met some lovely women, with lovely children. Alas, after a few outings, I have stopped participating. It is difficult to find activities that Delilah can participate in. Park play was out of the question because of the heat, as with anything that kept us outside for extended periods of time. Then there were a lot of activities that seemed too ‘old’ for her or were centered around food. I just couldn’t seem to find anything that worked for us, and I guess I gave up. 

I really hate that I gave up. Delilah loves other kids. Anytime she sees another child, while shopping, she will twist around in her seat and giggle and babble at the child. Each and every time it makes my heart break because she doesn’t get to see other kids very often. Actually, she only sees other kids when we see her cousins in Florida. I need to make more of an effort to make friends, for the both of us. 

Another thing I have been noticing more is FOOD. It has always been difficult to get Delilah to gain weight, so the types of food she eats hasn’t always been an issue. Of course we try to keep it as healthy and sugar free as possible. Now I am more focused on what she eats and what is around. She is a typical toddler and wants what we have, be it food or the remote control. She is easy to redirect, NOW, but we want to prepare for the future. We don’t know when it will happen, but at some point food will be a main focus for Delilah so we need to make changes now. So we have been trying harder to eat healthier and keep the snacking to a minimum, with zero snacking in front of her. It is definitely going to take some getting used to. Think of all the parties and holidays that have food sitting out, EVERYWHERE. We have to stop that, NOW! It’s something that is going to take some work. Football season should give us some practice. I’m just hoping everyone we are around will be on board with everything we have to do to protect Delilah. 

Wow, what a long post. I didn’t mean to go into such a long dialog. Please know that I am not consumed with these worries 24/7. In fact, it is rare form for me to even think about what the future with PWS will bring. I try to live for each day and deal with things as they come. I know that there are going to be some hardships in our future so I want to enjoy everything I can now.  Delilah is perfect in my mind, and no diagnosis of PWS is going to change that. She is going to do amazing things. I can’t wait to see what’s next!

***Just because no post is complete without a photo***