Wednesday, October 19, 2011

Video Wednesday

Just a few cute videos to share today (taken from the I Phone)! Adaline's personality is really starting to show. I can tell that she is going to be a very sweet, cautious, loving, and rambunctious little girl!

Playing "where's Adaline". A favorite game. :) 

Walking with her push toy. This was before work one day. She is in the best mood in the morning!

Adaline and her puzzle. Haha. 

Sunday, October 2, 2011

The Waiting Place

Part of the reason I wanted to start blogging again was to utilize the encouragement and support we have from all our friends and family across the country. Although some know about what our sweet Adaline (and Chad and I) have been through this past year, I realized that to start blogging about a struggle so personal and painful is really quite difficult! But, I think its a positive step. A step towards being more transparent with our struggles and perhaps finding other other families that are in this "waiting place".

One year I posted about Adaline having Pyloric Stenosis and the surgeries she underwent to fix her tummy. The last blog post I wrote in February was right before this crazy journey started of "finding out what's wrong". 

Adaline has been, for lack of a better descriptive word, "tight" since she was born. She was curled up in a little ball for the longest time. To put it in perspective, she has never been able to put her foot in her mouth, physically (although she has tried!). Her pediatrician thought that she would stretch out and that it was, perhaps, contributed to her breech presentation at birth and the pain she endured with eating after her surgeries. But, after Adaline's hips would not open normally and it was painful for Adaline to start sitting, we were referred to Orthopedic pediatric specialists at The Children's Hospital to look at Adaline's hips and bones in March of 2011. At that appointment, we found out that Adaline's bones were perfectly normal, but that her tissue and muscle were not. They were described as "doughey" and hard. 

It was after this appointment that we have started this journey to find out what is going on with our sweet girl. My heart was so extremely heavy after that appointment. I'm sure I'll write more posts on the weight that is suddenly given when you know that something (although what is not known) is wrong. It is awful.

So, after that appointment, we have been to a metabolic specialist, neurologist/muscle specialist, a geneticist, a pediatric rehab specialist, and a cardiologist. Adaline has undergone so many tests: countless blood work, genetic testing, MRI of her entire body, chest x-rays, an EKG and echo to check her heart. What we know is this:  Adaline does not have a metabolic, muscle, neurological, or cardiac disease or disorder. The MRI of her body was all normal! Her brain looked great and her muscles, bones, and tissue looked normal. Adaline is progressing amazingly in Occupational Therapy--we are actually going to not go as often because of how well she is doing (she is sitting really well, crawling, cruising furniture, and starting to walk just holding on to one hand. All of these developmental milestones have taken work, though. Its often painful for Adaline to move in new ways. She is really a trooper, though! And so so so resilient). We will continue to see the rehab specialist, Adaline's pediatrician, the geneticist, and a dermatologist (that appointment is next week).  

So, we are back where we started. The place of not knowing. The place of frustration. The waiting place. The place where God is truly refining our family (I sometimes call it a place where I am being grinded down to the bare bones of life) and growing us daily. We covet your prayers while we wait (and for the afterwards, too). We are angry and frustrated at times. So sad a times.  Most times we are laughing and joyful.  But we are ALWAYS incredibly grateful and overjoyed to be blessed with such a truly amazing little girl--who smiles and laughs all the time. Who can brighten my day at any moment.  Who loves learning and growing and developing new talents and abilities. 

The waiting place is hard. But, its certainly easier with this sweet family that I have been blessed with.

1 Year (plus some)

I know its been far too long, friends and family! I have decided to start blogging again because life is moving much too quickly and I want to keep everyone updated. Also, I thought I could use this blog as an encouragement/prayer/care site, too, as we find out more with what is going on with Adaline. More to come about all of that as well. For now, an update on our sweet girl (who is now 14 months old!):

ONE YEAR (plus a few months)

Nicknames: Sweet girl, Addie (to a lot of people), and Dad and I really just call you Adaline. :) 
Temperament: You have a sweet, sweet temperament. You take a few minutes to warm up to new people, but after a couple of moments, you are trying to make the whole room laugh! You love to laugh, too. And its contagious. You are gentle. Cautious at times. Curious. Loving. And so resilient. You are quite amazing. Its hard to believe that just over a year ago, you had your surgeries and you were in so much pain. You have come so far in just a year, sweet girl!
Things I could do without: You love to throw your paci's out of the crib when you are napping and you think its great fun. But, this just means you aren't napping. Also, you love to feed the dogs your dinner and that has caused many battles for mama and you at dinner time. 
Things you could do without: Getting dressed (you really prefer to be naked), and being held when you don't want to be--you want to be on the go!
Item/toy we love the most: Your little push toy that Bethany got your for your birthday and your rocker. You love them. I love that the push toy helps your learn to be more independent! We also love Baby Einstein videos because you love to dance to all the music! Its fun to watch. 
Item/toy you love the most: Your push toy, your sippy cup, your big nob puzzle (that you like to use as pacifiers), anything that you can pull out/toss all over the room (such as the basket of stuffed animals in your room that you love to empty)
Things I'm loving the most right nowYour curiosity. I love that you are curious about the world! You love to look in every nook and cranny.  I love your laugh. And your smile. Its a welcome relief after a long day at work. Your kisses and high fives. The way your say Mama and Dada. I love that you are learning something new every week. Your development seems to have accelerated! Its incredible. 
Things your loving the most right nowYou love walking around with your walker and "cruising" the furniture. You love playing "Where's Adaline" and surprising people with your incredible smile. 
What you are saying: You are saying Mama, Dada, and, at times "Hi" and you are starting to say "Dog". You are so smart, sweet girl! 

*This was taken just yesterday. What a big girl!*