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...
Monday, February 11, 2013
Our Story
1.1.2012, a day filled with so many emotions. It was also a day that David and I will never forget as long as we live. Our precious daughter, Ellie Jones Spearman entered the world. Much to her daddy's prediction, she made her grand entrance on New Year's Day. David had gone on and on about how she needed to come before New Year's so we could get the tax credit. So, I found it fitting and hilarious that our daughter thought 1.1.2012 would be the perfect time to come. This was Ellie's first showing of her witty, hysterical personality. Get ready daddy...
My pregnancy and labor (up until the epidural) had been picture perfect. David and I were so excited as we arrived at Spartanburg Regional at 3:45am on New Year's Day. We passed Krispy Kreme on the way to the hospital, and of course, the Hot-N-Now sign was on. I jokingly told David we should stop. We both agreed we should just get to the hospital. They immediately sent us to triage and confirmed that my water had in fact broken, so we were definitely staying at the hospital. My contractions were starting to pick up and I told them to go ahead and get that epidural ordered, I was ready as soon as I could have it! After multiple sticks and calling the vein team in, I finally got my IV and they moved us into our labor room. They came in to give me the epidural, and I thought everything was fine at first, then I could feel the contractions really strongly on my left side, and not on the right. The epidural had not taken on my left side. David was an awesome coach and so, so wonderful through everything. I progressed quickly for it being my first baby and by the time I reached 9 1/2 centimeters they started moving everything in for push time.
Then everything changed.
Oxygen went in my nose, side to side flipping, talk of a c-section, to, "Gwyn, sign here, we are doing a c-section." They wheeled me out of the room straight to surgery, threw scrubs at David and said he may or may not get to come back with me. Ellie's heart rate had dropped. It was all like a dream to me, and David was terrified.
He did get to come back, thankfully, and Ellie was born at 12:07pm. I remember not hearing her cry and asking over and over, "Is she ok?" We kept getting the same answer, "She's fine." This answer did not sit well with either of us, and at that moment, I believe we both in our heart knew something wasn't quite right. Ellie weighed 5 lbs 3oz and measured 19 inches long. I remember being so puzzled that she was that tiny, because our doctors had predicted a 7 lb baby. She was absolutely beautiful, and seeing David hold her for the first time was a moment I will treasure forever. He glowed with pride and I fell so much more in love with him.
They brought Ellie to me in recovery, but she did not want to nurse. After that she was taken back up to the well baby nursery, given a bath and they tried to feed her. When I was taken to the room, all I remember is the nurse telling David he needed to go to the NICU. He hurried to the NICU to check on our baby girl. Ellie had a blue spell when they gave her the bath, so they sent her to the NICU to be checked out and as a precaution. She was brought back to the well baby nursery and then to our room. She was so tiny, so pretty and so sleepy. I remember her being so dehydrated, and she again did not want to nurse. We held her from 7pm-9pm and our family was able to as well. That night after our family left, the nurse brought her back to our room at 11pm, and all I remember was the nurse grabbing Ellie and running out of our room. David and I were terrified and did not know what was happening to our little girl.
Another breathing episode, and this time they admitted her to the NICU. And this began our month long journey spending every waking second with our daughter, learning all there was to know about the NICU, spending time with pumps, speech therapists, occupational therapists, physical therapists, nurses, doctors, have all kinds of tests run, coming home without our baby, leaning on our family and friends, growing so much as a couple, loving each other deeper than we ever knew was possible, becoming a TEAM in every sense of the word, and ultimately clinging to the Lord in every possible way.
My pregnancy and labor (up until the epidural) had been picture perfect. David and I were so excited as we arrived at Spartanburg Regional at 3:45am on New Year's Day. We passed Krispy Kreme on the way to the hospital, and of course, the Hot-N-Now sign was on. I jokingly told David we should stop. We both agreed we should just get to the hospital. They immediately sent us to triage and confirmed that my water had in fact broken, so we were definitely staying at the hospital. My contractions were starting to pick up and I told them to go ahead and get that epidural ordered, I was ready as soon as I could have it! After multiple sticks and calling the vein team in, I finally got my IV and they moved us into our labor room. They came in to give me the epidural, and I thought everything was fine at first, then I could feel the contractions really strongly on my left side, and not on the right. The epidural had not taken on my left side. David was an awesome coach and so, so wonderful through everything. I progressed quickly for it being my first baby and by the time I reached 9 1/2 centimeters they started moving everything in for push time.
Then everything changed.
Oxygen went in my nose, side to side flipping, talk of a c-section, to, "Gwyn, sign here, we are doing a c-section." They wheeled me out of the room straight to surgery, threw scrubs at David and said he may or may not get to come back with me. Ellie's heart rate had dropped. It was all like a dream to me, and David was terrified.
He did get to come back, thankfully, and Ellie was born at 12:07pm. I remember not hearing her cry and asking over and over, "Is she ok?" We kept getting the same answer, "She's fine." This answer did not sit well with either of us, and at that moment, I believe we both in our heart knew something wasn't quite right. Ellie weighed 5 lbs 3oz and measured 19 inches long. I remember being so puzzled that she was that tiny, because our doctors had predicted a 7 lb baby. She was absolutely beautiful, and seeing David hold her for the first time was a moment I will treasure forever. He glowed with pride and I fell so much more in love with him.
They brought Ellie to me in recovery, but she did not want to nurse. After that she was taken back up to the well baby nursery, given a bath and they tried to feed her. When I was taken to the room, all I remember is the nurse telling David he needed to go to the NICU. He hurried to the NICU to check on our baby girl. Ellie had a blue spell when they gave her the bath, so they sent her to the NICU to be checked out and as a precaution. She was brought back to the well baby nursery and then to our room. She was so tiny, so pretty and so sleepy. I remember her being so dehydrated, and she again did not want to nurse. We held her from 7pm-9pm and our family was able to as well. That night after our family left, the nurse brought her back to our room at 11pm, and all I remember was the nurse grabbing Ellie and running out of our room. David and I were terrified and did not know what was happening to our little girl.
Another breathing episode, and this time they admitted her to the NICU. And this began our month long journey spending every waking second with our daughter, learning all there was to know about the NICU, spending time with pumps, speech therapists, occupational therapists, physical therapists, nurses, doctors, have all kinds of tests run, coming home without our baby, leaning on our family and friends, growing so much as a couple, loving each other deeper than we ever knew was possible, becoming a TEAM in every sense of the word, and ultimately clinging to the Lord in every possible way.
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