Today is a day I will never forget!! Ellie took two unassisted STEPS! It was so amazing, and absolutely wonderful. Sarah, our EI had just finished up, and I had put Ellie in her corral to play a bit while we finished up some paperwork. Sarah and I looked up, and Ellie was backed up against the corral with her arms out steadying her for balance. I looked at Sarah and said, "It looks like she is about to take off!" Well, my strong girl DID! She took two steps and Sarah and I screamed with joy. We captured it on video and then five minutes later, David stopped by for lunch. He got to witness the excitement and joy as well.
What-A-GREAT-Day!
Tuesday, May 28, 2013
Thursday, May 2, 2013
PWS Awareness Month
Awareness Month
I missed posting yesterday, which was a BIG day for several reasons...
1. May is PWS Awareness Month, and it was 5/1/13. FPWR is promoting numerous activities throughout the month to encourage awareness. I have been a part of this committee and it has truly been a blessing to me, working with the other parents, brainstorming ideas together, and seeking to raise awareness about something so dear to me. Yesterday started the PWS Challenge. Individuals were asked to give up something they loved for the month of May, in honor of PWS Awareness Month. It is just a SMALL way we can understand what our loved ones with PWS feel like everyday. I chose to give up Mocha Frappes and ice cream, two foods that I quickly realized were comfort foods for me and go-to foods everyday...let me explain, on the way to therapy - Mocha Frappe, on the way to doctor's visit - Mocha Frappe, night after Ellie was in bed - ice cream. Bad, bad habits. In my mind, I justified it...I deserved it, emotionally I had worked hard everyday going to therapy and doctor's appointments. My, my, something needed to change...I didn't need all those calories and we didn't need to be spending all that money. I can honestly say, I certainly have missed these foods, craved these foods, and constantly have to talk myself into not turning into McDonalds, or opening the freezer at night. Each time I realize this, I think about Ellie. This is what she will feel like ALL DAY, EVERYDAY. I am broken when I think about this, and realize I must fight harder for myself for her. She is my driving force, and for that, I will win this challenge.
2. Ellie turned 16 months old! Where has the time gone? My baby is growing up, and her little personality is just shining through. She definitely has what we like to call the "piss and vinegar" of her father, and the sweetness of her mother;) To me, that is a great combination! She is such a happy child and I thank God everyday for that...she smiles at everyone, waves at them, and everyone she meets falls in love with her. Her hair has taken on a mind of its own...blonde, curly and out of control. I love it and don't plan to try and tame it anytime soon.
3. I can't even begin to find the words for how excited I am about this next point...Ellie WALKED for the first time with her princess car on 4/30/13!!!! It was so utterly sweet. I had told her EI that we had practiced pushing her car during OT and she is getting so much stronger, so we got the car and Sarah let her go for it....AND SHE DID! She pushed it around all by herself. I couldn't wait for David to get home so we could show him. Let's just say we have had the iPad out every chance we get to capture it on video. I also think she is making more and more sounds recently, which I am overjoyed about! She says da-da for everything, but has recently started pointing and saying "dat." She also has ramped up the ma-mas, which I can't get enough of. After talking with Dr. Miller recently, she said a lot of children with PWS tend to focus on one skill at a time, and when they do that some of their other skills fall behind. I think Ellie has been really focusing on her gross motor skills recently, crawling and walking, so her speech has taken a back burner. It is SO cool to see her making sounds as she is crawling and walking. It is just the best and so hard to put into words.
More to come about the PWS Challenge, and all the PWS Awareness Month events in May. Our girl is AMAZING and we are TRUSTING OUR JOURNEY. God provides and is so gracious...
I missed posting yesterday, which was a BIG day for several reasons...
1. May is PWS Awareness Month, and it was 5/1/13. FPWR is promoting numerous activities throughout the month to encourage awareness. I have been a part of this committee and it has truly been a blessing to me, working with the other parents, brainstorming ideas together, and seeking to raise awareness about something so dear to me. Yesterday started the PWS Challenge. Individuals were asked to give up something they loved for the month of May, in honor of PWS Awareness Month. It is just a SMALL way we can understand what our loved ones with PWS feel like everyday. I chose to give up Mocha Frappes and ice cream, two foods that I quickly realized were comfort foods for me and go-to foods everyday...let me explain, on the way to therapy - Mocha Frappe, on the way to doctor's visit - Mocha Frappe, night after Ellie was in bed - ice cream. Bad, bad habits. In my mind, I justified it...I deserved it, emotionally I had worked hard everyday going to therapy and doctor's appointments. My, my, something needed to change...I didn't need all those calories and we didn't need to be spending all that money. I can honestly say, I certainly have missed these foods, craved these foods, and constantly have to talk myself into not turning into McDonalds, or opening the freezer at night. Each time I realize this, I think about Ellie. This is what she will feel like ALL DAY, EVERYDAY. I am broken when I think about this, and realize I must fight harder for myself for her. She is my driving force, and for that, I will win this challenge.
2. Ellie turned 16 months old! Where has the time gone? My baby is growing up, and her little personality is just shining through. She definitely has what we like to call the "piss and vinegar" of her father, and the sweetness of her mother;) To me, that is a great combination! She is such a happy child and I thank God everyday for that...she smiles at everyone, waves at them, and everyone she meets falls in love with her. Her hair has taken on a mind of its own...blonde, curly and out of control. I love it and don't plan to try and tame it anytime soon.
3. I can't even begin to find the words for how excited I am about this next point...Ellie WALKED for the first time with her princess car on 4/30/13!!!! It was so utterly sweet. I had told her EI that we had practiced pushing her car during OT and she is getting so much stronger, so we got the car and Sarah let her go for it....AND SHE DID! She pushed it around all by herself. I couldn't wait for David to get home so we could show him. Let's just say we have had the iPad out every chance we get to capture it on video. I also think she is making more and more sounds recently, which I am overjoyed about! She says da-da for everything, but has recently started pointing and saying "dat." She also has ramped up the ma-mas, which I can't get enough of. After talking with Dr. Miller recently, she said a lot of children with PWS tend to focus on one skill at a time, and when they do that some of their other skills fall behind. I think Ellie has been really focusing on her gross motor skills recently, crawling and walking, so her speech has taken a back burner. It is SO cool to see her making sounds as she is crawling and walking. It is just the best and so hard to put into words.
More to come about the PWS Challenge, and all the PWS Awareness Month events in May. Our girl is AMAZING and we are TRUSTING OUR JOURNEY. God provides and is so gracious...
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