Life

Life is good, Ella is amazing. Everyday brings new words and facial expressions, new abilities as she discovers  more talents. Ella is getting so big, I see her everyday and if feels like she is bigger every time I see her.. Ella is 34 1/2 inches tall and weighs 25 lbs. she is 20 months. According to the old wives tale if you double a child's height when they turn 2 that is roughly the height they will be full grown. Ella still has 4 months to grow before she turns two and she is already nearly 3 ft.!! Oh my, I may have a 6ft. daughter some day :) She will be tall and beautiful! I am so grateful that she is growing so well, eating was a bit of a challenge in the beginning and still is from time to time, but over all she is doing fabulous. We purchased Ella's first medical alert bracelet. When I went online to order it, I felt sad that they had to make medical alert bracelets in a toddler size it didn't seem fair. When it came in I looked at it and didn't think it would fit it seemed so tiny, but it fit perfectly. It looks so small, it breaks my heart. It's not like I can ever forget about her heart defect, but something about having to wear a bracelet all the time feels like I'm branding her or something... like she is "tagged". It's hard to see it on her tiny yet chubby wrist. I am taking it slow, and easing her into wearing it. We are starting with wearing it when we go "out", not that we really go out much, but we like to take drives around town just to get out of the house sometimes and she would need it if we got in an accident. She doesn't like it anymore then I do, she will play with it, but if I try to put it on her wrist she cries. I have to remind myself that it doesn't define her just like her scars don't define her. I have to remember that even if their were no outward signs like blue fingers, toes, and lips, her heart would still not be whole and it would still be broken. This is life, it is going to be normal for us someday. At some point down the road maybe a tiny medical alert bracelet won't bring tears to my eyes and sadness in my heart,  maybe someday I'll be better at this whole heart mom thing. I have to try, to continue to not only except it but to embrace it. I have to be able to face it and not avoid it, other people in my life and in Ella's life will have the luxury of walking away if it is too overwhelming, they won't have to stay if they feel uncomfortable. Ella, Jon and I will never have one moment for the rest of our lives that this isn't in the forefront of our minds. I have to be strong because I want Ella to be strong. I want her to feel normal, I want her to see her medical alert bracelet and think of it as a safety device, nothing more. I want her to get excited to order a new fun color, not cry  that she has to wear one. I'm not going to pretend to know what she will feel, and I expect that she will have many many days that she feels sad, or angry, because of her limitations/daily medications etc. but I'm going to do everything in my power to help her approach life with the attitude that life is worth LIVING, that she has a second chance to live her life. I want more then anything for her to live without constant fear and feeling sorry for herself, I want her to know that she is STRONG. She has come so far and beaten so many odds, she is a fighter, a survivor! 

More videos

http://www.youtube.com/watch?v=COAfBq4ebdo&feature=channel&list=UL

More cute videos on YouTube! Search "amyladawn" :)

Easter 2012

Ella's Easter Basket! 

 She is serious when it comes to chocolate bunnies! 

My sweet girl!

Hugging her bunny after biting off it's head!

 Egg hunt!

It was a great day just the three of us! This Easter I find myself so incredibly thankful for the gift given to us all! I think about the sorrow Mary must have felt when Jesus died, and what JOY must have consumed her when 3 days later he AROSE!! happy resurrection day! Today is Ella's 20 month birthday!!!! What a wonderful life I have being her mommy! She is such a wonderful little girl. I know I make it sound to good to be true, but it is just that amazing! Ella is talking so much now, She walked up to me a few days ago and started touching my face and said "Momma beautiful, Momma beautiful" Then she walked away saying "happy, happy, happy," Then she sat down and picked up her Christmas story book and "read" it saying "Jesus, Jesus, Jesus"! She LOVES to say "prayers" at dinner and bedtime, She often says "Ella beautiful" and she laughs at nothing and makes us laugh too! She is very encouraging and likes to say "Good Job" and "Yay" She is showing good manners and says "bless you" when we sneeze she says "please" and "thank you". She says "No thank you" and "all done" when she is finished. She goes to bed without a fuss, she eats good, she plays alone well, she doesn't do something after she knows it is a "no, no" She loves to watch "Boz" in the mornings and she likes to "snuggle snuggle" She is constantly giving unprompted hugs to Jon and I! She will just walk up and wrap her arms around our legs and squeeze tight and say "ohhhhhhh" It melts my heart every.single.time. She said her first sentence last week, She came up and gave me a hug, and while hugging me she said "I love you so much"! It was so sweet, brought tears to my eyes! She really is quite a hugger, she hugs everything, stickers, chocolate, toys, hats, books... anything. She is so sweet! She is as perfect as they come. No I'm not making this up. She is AMAZING! I say it a million times a day, Jon and I both talk about how unreal she is at least 10 times a day! On her fussy days, she is smiling 90% of the day. She rarely cry's at all. I could go on forever, but I have a feeling no matter what I would say it would never accurately describe how wonderful my miracle is! I hope you all had a wonderful Resurrection day! 
Remember to check our youtube channel for new videos of our Ella! "amyladawn"

Prayers for her heart friends!

http://www.youtube.com/watch?v=6t04fBssTkY

Feel free to look up "amyladawn" on youtube for more videos of Ella! :)

:) ABC's

http://www.youtube.com/watch?v=e8EaaNhAOYc&feature=plcp&context=C438f27fVDvjVQa1PpcFMuz-Y9zlVNw-znPctzQv_MbTeJEYLMv20%3D

pictures as promised! :)

Updated our YouTube channel! Search "amyladawn" for some super cute videos too!

A response to our first (and hopefully last) negative comment.

I (Jon) have a few things to say about this comment posted by an "Anonymous" person.

"I realize that she could get really sick if she caught a cold but don't you think that you are going overboard a bit. Are you going to always keep her in a bubble. How will she be able to have friends if you are that paranoid? She will have no immune system because you have kept her sheltered."

  I'm not sure who you are, because you chose to be anonymous, but this Blog was designed to update and encourage those who chose to follow Ella's journey, and is not the place to be posting inappropriate opinions publicly. But I will use this opportunity you've created for me, the Dad, to address some of the questions and thoughts that you, and maybe a few others, may have. First, I don't think you really "realize that she could get really sick if she caught a cold" or you wouldn't have finished your post. I also believe that if you were truly thinking of Ella's well being, and having the information we've been given, you too would be willing to make the sacrifices and hard decisions as we have. No, Lord willing we will not keep Ella in a bubble forever. Our Doctors say that a child under the age of two can be sheltered from germs with little to no weakening to their immune system. Ella still has at least one more open heart surgery to go, it is crucial for her to stay well. So as hard as it my be on Amy and I, Ella is more than enough reason for us to make the hard choices and forgo some things like church, family gatherings, friends, holiday celebrations,...etc. Also, I think we all know that Ella, 19 months old, still has time, God willing, to not only make new friends but meet the hundreds, even thousands, of people who have supported us and shown us love. I know, they would be honored to be called her friends. I realize that choosing "Anonymous" may have been an accident, that being said this comment was still unappreciated. It's never a good idea to post something that you don't have the confidence enough to put your own name behind. We are fine with people asking questions and even having doubts about the way we do things. We are happy to help educate others about heart defects and our lifestyle, but out right accusing us for the decisions that we have made for OUR special needs child that you clearly don't know about, is hurtful. Please remember that every decision we make is made with the best knowledge we have. We pray and ask her doctors before we go forward, and we know our daughter better then anyone else possibly could. 

A BIG THANK YOU to all those faithful friends out there who continue to lift our little family up in prayer, love, and support. It's awesome to experience God answering your prayers. Doctors tell us they've never seen a baby with her conditions do so well. Ella is a miracle, and that's all there is to it.

Please continue to remember Ella's little heart friends( Emma, Lyric, Annabelle, Scarlet, Evan, Bethany... etc.) 

Thanks, and God bless!!! Ella's Daddy

Update :)

Well friends, So sorry I haven't been consistent updating here! I know it must be hard for Ella's regular readers! The truth is we have been soaking up every minute! Ella is SO MUCH FUN! She is talking and walking all over the place, she is gaining weight well and sleeping pretty good too! She is a goof ball and constantly has us laughing! She just recently has been saying "Ella beautiful" We may have our hands full! We both tell her she is beautiful all the time, because well she is beautiful and she deserves to know that! Ella is so sweet, she is quiet most of the time, and plays well by herself. She loves books, and is learning so much! She is good at filling in blanks in all her books and in the alphabet. She can count to 10 with some assistance of course! She is learning her colors too! Ella is even starting to show some interest in early potty training signs! She often tells me she needs to go, but we aren't ready to start full potty training yet. She has gone pee pee in the potty once! Ella just loves flowers! She is sweet and often says "kisses" and of course that request has yet to be denied! :) We are just loving this weather that the Lord is gracing us with! It has been such a mild winter, and being home-bound it sure is nice to be able to open the windows or take a walk! We play with chalk and bubbles we watch airplanes and pick flowers, we sing songs, and have dance parties, we swing high, and laugh often. Life is wonderful and oh so full of love! What an amazing gift each day has become! Jon is just the most amazing husband and father for Ella and I. We are so very blessed to have him holding us all together! Jon and I have had a hard time finding "us" time since my mom is the ONLY one we trust to watch our sunshine, and she is super busy and of course can't come around if she has been around anybody sick (we prefer her to have not been around anybody for at least 24 hours before coming when possible!) So as you can imagine that has only happened a precious few times. Even when she is available, we have to majorly limit our contact with the outside world as well, we don't go out to eat on holiday's or busy times. We always ask to be seated in the corner. We use hand sanitizer about a million times, we don't touch our faces, we hold our breath when we can't avoid walking by a crowd. I am usually fighting a bit of anxiety just being away from Ella and being "exposed" the the germs in the world. We did manage to celebrate valentine's day (a week or so after too avoid crowds of course). We realized it was the first time we had been on a date in a year. We hadn't been out since last Valentine's Day. The only other time we have been out together was for a doctor appointment for me. So yes, it isn't often we get to be "us" but when we got to go out on Valentine's day, it just reminded me that He is always worth my time! I love him so very much! I realize that all the precautions that we take may seem overboard to many of our readers, friends, or family's, but I also don't second guess our decisions. So far the benefits of these restrictions far out-way the sacrifices! On another note it is crazy, but it's already time for me to start planning birthday party number 2!!! Still 5 months away, but wow, when on earth did this happen!?!? I hope to upload pics soon, so stay tuned, trust me she's a cutie! I also have quite a few video's that I have on my phone, if I can figure out how to post them here I will do that too! She is seriously ADORABLE!


As for a heart update, we are very pleased with Ella's heart! She is doing very well and she is holding her sats steady at about 83% her heart rate is nice and steady too! We were told at her last appointment that her next surgery could be as early as this summer, but I'm not convinced it will happen. I don't think they think it will either, it's just an option. That being said, Ella was scheduled to have her routine heart check up yesterday. Considering that it is flu season and that Ella is doing so well, we decided to reschedule (with the cardiologist's consent of course) We rescheduled it for May 21st! This is by far the longest time between doctors appointments EVER! We still see the home health care nurse here once a month, but that should end when the flu season does (can't be here soon enough). Over all we are on track and doing great! Thank you all for your continued prayers for our sunshine, we don't want them to stop just because of a good report. We know things could change in a heart beat, we have seen it. We love you all so much and are beyond grateful for your love, support, and most importantly your prayers!

Valentine's Day!

Dancing! 

She is adorable! 

 We had a great day!

 luckiest girl in the world!

 We kinda like each other ;)

 "Will you be Daddy's Valentine?"

 "Yes Daddy!"

 "Flower!"