Thursday, March 8, 2012

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!


  1. 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.

    1. Children who are in Intensive Care (or worse) do not have friends. I think perhaps you missed the point--Ella is protected like this because she does NOT have the immune system that other children are blessed with. Perhaps now would be a good time to reflect and be thankful that God gave Ella to parents who could reconfigure their lives like this rather than giving her to someone like you (and I) who would find it next to impossible to give her the care that she needs. I do my best to not second-guess parenting decisions for children other than my own. :-)

  2. Yes, she is adorable and of course, you are absolutely doing the right thing "avoiding crowds", etc. Ella is depending on you!!!! Have a wonderful spring/summer. The Easter Bunny is just around the corner, too. Prayers continue

  3. Thanks for the update. I'm so glad to hear that your little sunshine is doing so well. Can't wait for new pictures.

  4. Amy,

    We are glad you don't post everyday. That means you are spending time with your precious child. I look at some of these young moms who post trivial things everyday. It's like they're posting on Facebook or something. You are doing exactly what you should--enjoying the gift God gave you!

    Once again, I am so impressed at the level of maturity and discernment you and Jon display. You take Ella's condition very seriously and you are willing to give up your life for her safety. That is a picture of Christ's love for us.

    Your blog is the only one I read now!

    Cindy Cole

  5. My son is being tested for a genetic immune deficiency...I totally understand where you are coming from. Every time we go out is an act of faith with all the "what if's". I know it hurts so bad for others to make it obvious that they think you are "living in fear" and "not trusting God". I think you are doing a great job raising Ella!


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