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.

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