So last night we took our second annual trip to drive through a Christmas light display! We bundled up and headed out in our toasty car with Christmas music playing and big grins on our faces! Another year, another Christmas, another open heart surgery complete, another day together! My heart was bursting with Joy and thanksgiving! I couldn't help but say a prayer of thanks to the One who gave us our miracle! I don't update too often anymore and I'm sorry about that, but the good thing is that when there is no update things are usually going well! Life is in full swing, we are decorating the house, planning Christmas dinner, buying and wrapping Christmas gifts! Of course Ella is learning and growing faster then I knew possible!!! She is singing and and learning new words everyday! She says nearly anything I ask her too, she has been taking steps since the day after her 1st birthday and now nearly 4 months later she is still not "walking"! about 2 weeks ago she took 5 steps all by her self and even several more a few times after that, we just new she would take off in a few days, I even announced on Facebook that she was "walking!" ha. She made a liar out of me! However now she will stand up in the middle of the room all by herself, then look around and say "walk" then she will say "down" and sit back down, then I hear "up" and she stands back up, then "down" and she squats back down! lol up and down, up and down, but no walking... until yesterday! Twice she stood up completely unprompted and unassisted and said "walk" I said "come on Ella walk to mommy!" and she took a step, so maybe just maybe we are almost there! We've been thinking she would take off any minute for the last 4 months, so I guess she just wants to do it on her time! ;) That's my girl! Anyway I really don't mind, I mean I want her to walk and since it seems to be taking longer then I expected, I occasionally get a little discouraged that maybe I'm not doing a good job with her, but then I remember ALL that she has been through, and how AMAZING she is doing and just how FAR she has come!!!! Add that to the crazy emotions of "my baby is not a baby anymore" that I had when she walked for the first time, and I am content to see her crawl just a little while longer. :) That's part of the bitter sweet feelings I have at every new milestone that Ella meets, I have this overwhelming sense of pride at her accomplishment and all she has been able to overcome, and instant sadness that my only baby is growing up! Ella had a cardiology appt. the other day, and her heart is looking great! Her sats are staying right around 83%, our main concern right now is her CRAZY high blood pressure (160 over 99)! Her cardiologist isn't concerned, and just wrote it off as severe anxiety. I know she has bad anxiety at the doctor, but I'm not sure why it's just now affecting her blood pressure, when she has ALWAYS had a hard time at the doctor. He did raise her blood pressure medication, but still said we won't see him until March unless we have a concern between now and then. We'll see. We are into the dreaded flu season where we have to WASH and STERILIZE everything! We do not have visitors (even though they were MAJORLY limited before anyway), we stay as secluded as possible! Of course their are some who may think it's overboard... they (usually) don't have a child's life on the line. I have learned that as a parent, especially of a special needs child that some people are just plain ignorant. They say things and give "advice" that is just a lack of discernment and knowledge. It's hard not to take some comments personal, but it is very important to be able to let those comments roll off our back and realize the God chose us to be Ella's parents for a reason! We know her better then anyone, we know her heart, her limits, our life. We also know we will make mistakes, and we won't always make the best judgments. So with humble hearts we ask God for wisdom every night together as we make life changing and possibly life saving decisions for our sweet sunshine! We
have had our flu shots, but since we may be looking at her next open heart surgery possibly as early as this summer, it's very important to keep her healthy. Because Ella's heart condition makes her oxygen level lower then ours, it is really hard on her when she gets sick, because even the smallest sickness or infection puts her at high risk for complications and possible hospitalization. As Ella's next surgery approaches her oxygen level will continue to slowly drop and as this happens sickness will be much harder on her. We know this is just a season. We will continue worshiping with our Church via the live feed online (we are so VERY thankful for technology!) Here's where we need YOUR HELP (if you're local)! We still have to go to the store and run necessary errands, so for the safety of Ella, if you see us, we need you to not come too close to us, even if you have the sniffles, you are a risk to our family. ALWAYS skip the hugs. ;) Just being aware is a great start! We covet your prayers for our family as we continue on this journey. We hope that by next winter, or the one after that, Ella will be strong enough to be around all the people we love more often! :)
Chilling watching some T.V.
Mommy caught you :)
Ready to go look at Christmas lights!
Don't forget the adorable hat!
One VERY blessed family!
Ella's got the wheel! (no worries we are going about 2mph.)
Back in her seat safe and sound ready for the drive home!
Such a sweet post, Amy! And the pic of Ella sitting in her chair with her feet up - adorable! I have a pic of me like that, except I had my feet propped up in front of a little space heater we had (of course!). Haha. Even back then I was always cold!
ReplyDeleteCute pictures! Where did you get Ella's chair? We would like to get Hannah one for Christmas.
ReplyDeleteCindy Cole
Oh Boy, yes, people have lots of suggestions and instructions for someone with a small child, and even a special needs child. If you don't mind, I have a suggestion...........DO IT YOUR WAY. Just ignore the little ideas, because they know nothing about your situation. We are parents of an adopted child. Wow, what advice we got. Advice from people who knew absolutely nothing about adopted children or their parents. We learned to just smile and go on. People mean well, of course, but they just don't understand. Bless you all. You are doing wonderful. Oh, yes, another piece of advice.......Have a wonderful Christmas and leave Santa a cookie and hot chocolate. LOL
ReplyDelete