This blog charts Erin's progress in dealing with Ebstein's Anomaly, a relatively rare heart defect. Erin was diagnosed with Ebstein's in February 2008 during a routine ultrasound review at 20 weeks pregnancy.
Sunday, August 23, 2009
August 22, 2009
I am sitting here in the kitchen, watching "Erin TV" waiting for her to wake up. It is about 6 am on Sunday morning, and I wanted to add a brief update due to all the milestones Erin has been hitting lately. This week has been filled with a lot of firsts.
Although she has taken the random step here and there, this was the week that she really began walking on her own. At times, she looks like something from an old horror movie, arms overhead and staggering along like a Frankenstein character. Other times, she looks pretty good and confident at it. Best of all, she seems to be able to move both legs in a very natural fashion, showing no signs of her stroke, which has always been a major concern in the back of our minds. She gets such delight out of accomplishing a walk across the room, and often sits and applauds herself after crash landing at her chosen destination. We both love seeing her delight with herself. Michael Jordan once told me that the greatest gift his parents gave him was the gift of high esteem and self confidence. We both want the same for Erin.
Yesterday, Erin surprised me by pointing out her nose, eyes, and ears for me on command. We didn't know that she had learned those words. She knows belly button, and likes to lift up her shirt to find hers when asked. She seems quite taken with it. It is a perfect little belly button, not what you would expect if you had seen it filled with tubes and wires when she was first born.
Erin is also starting to gain some patience, shown through her willingness to sit and watch Sesame Street videos on the SS website. Note that patience is relative...it may be 5 minutes or even 10, but that seems like a lifetime when you are used to the energy and activity that she displays at all times. She will make her way to the kitchen table, and try to climb up the chair to get at the laptop computer, signaling that it is time for another Sesame Street session. At times, she likes to sit in your lap while watching the videos, occasionally glancing up to make sure you are enjoying them with her. Other times she wants to be a big girl, sitting in the kitchen chair by herself. When did she get so big that she can sit in a regular chair on her own? It seemed to happen overnight.
It seems like a lifetime ago when we had to watch her every second when she was on the couch or our bed, in fear that she would fall off. In fact, she did roll off the bed in Arizona once, scaring the living daylights out of me (and her). She was fine, but it was a scary fall from quite a height. Now, she climbs up and down anything like a little monkey. She figured out all on her own how to turn around and lower herself down while holding on, until her feet can find the floor, or until she is close enough to let herself drop. Yesterday, she did fall from her changing table as I stepped away just to deposit a dirty diaper in the bin. I was within a foot of her when she suddenly surged forward and went right off the front. I semi-caught her on the way down, and she bounced slightly off the floor. Once she figured out she was ok, she started laughing and I thought she was going to want to do it again. I passed on the opportunity to accelerate my heart rate that fast a second time.
On Friday, the two young ladies that Priscilla used to babysit came over to spend the day with Priscilla and Erin. They are 14 and 12 (I think), and Erin was in heaven all day long having playmates and people to show off for. She was quite taken with them, and it was really fun to watch her go through all of her tricks. She so loves being around people. She has made some very nice playmates at the park, and one of the highlights of her day is her daily visit to see her friends.
Finally, Erin is learning the word "no." She doesn't like it anymore than I do. When told no, she has a little routine that she often employs to try and get her way. First, she looks at you with a smile and begins to clap her hands. If this doesn't result in a yes, she moves on to stage 2 where she begins to wave at you. Stage 3 is a "aren't I the cutest thing you have ever seen" look (yes), with her head down, eyes peaking up at you and a huge smile. Stage 4 is the nuclear option, where she lies prone on the floor and cries. A quick distraction and we are right back to happy Erin.
The wakeup routine is beginning on Erin TV. She is rolling around in her crib, and sampling each of her binkies. Now she just tossed one out of the crib, and stood to see her handiwork in action. Now it's back down on her knees, binkies in hand and mouth. Shortly she will begin flipping back and forth, feet kicking and arms gesturing. Soon she will be standing in the crib, speaking in her own language to let us know she is ready to start her day. And so begins another day.
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2 comments:
Hi Shiela. Love that picture of Erin in the sunglasses. It sounds like she's doing really well!
I'm Hua, the Director of Wellsphere's HealthBlogger Network. I've been searching the web for quality health blogs and am thrilled that I found yours. There is so much information here for people with Ebstein's. Wellsphere visitors find relevant content and answers to their questions in one place, without having to wade through hundreds of search engine results to find what they want. We provide the platform that allows over 6 million users a month to connect, network, and find quality information.
I think your blog would be a really great addition to the Children's Health Community. I invite you to join and find more information about us at http://www.wellsphere.com/health-blogger.
Thanks for all the hard work you put into this! Feel free to email me if you have any questions.
Best,
Hua
Director of Blogger Networks
hua [at] Wellsphere [dot] com
HI ! tHIS IS jAMIE'S MOM jULIE , jUST WANTED YOU TO KNOW i THINK THAT YOU ARE DOING AN AMAZING JOB WITH ERIN AND I AM SO GLAD THAT SHE IS GROWING AND THRIVING !!!! SHR IS SIMPLY BEAUTIFUL AND I AM SO HAPPY THAT SHE IS DOING SO WELL . I KNOW SHE IS NOT COMPLETELY OUT OF THE WOODS, BUT SHE LOOKS LIKE A VERY ACTIVE . AND CURIOUS CHILD . TAKE CARE ,,,AND THANK YOU SHELIA FOR ALL YOU DID FOR MY BABY THOSE FIRST FEW ANXIOUS MONTHS WHILE SHE WAS FIRST IN CHICAGO . YOU WILL ALWAYS HOLD A SPECIAL PLACE IN MY HEART FOR ALL YOU DID FOR HER ! LOVE JULIE JOHNSON .......JAMIE LANGHAMS MOM
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