A Heavy Day

Monday was Ruby's follow up appointment with the holistic doctor. She re-tested her and was pleased with the progress even though it's slow. We had to decrease some of the supplements she wanted her on due to restlessness and getting up 4-5 times/night. This was a huge change from sleeping 12-14 hours/night. She took a few more things out of her diet but then added a few as well. She added a few more supplements and wants to be more aggressive with the amounts we are giving her so we can get her gut healed. She said it could take up to a year!! The next visit is in 6 weeks. 

Today was the day we met with Ruby's genetics counselor and doctor. What we heard was not shocking news. It was something I thought of often, just chose not to dwell on it. First they told us Ruby has microcephaly. It's a big scary word that means "little head." Those of you that have met her are not surprised. 

The genetics team also came up with 5 different chromosomal concerns with Ruby. They are all large words/acronyms and their descriptions are also large and difficult to fully understand. They told us that two of these chromosomal concerns are characteristic of persons with primordial dwarfism. They recommended an addition test to validate their anticipated diagnosis. The label of 'primordial dwarfism' is not new as several doctors mentioned it when Ruby was a patient at Childrens Hospital. We have done our share of research on the topic to become familiar with it. But I have come to the conclusion that awareness and education of a condition does not prepare you for hearing a doctor telling you that your child HAS it. 

I spent most of my day with a sad heart. Sad that our daughter will have additional challenges to face. Sad that she will miss out on so many things that other children/adults can do. Sad that she has had such a tough beginning to life; why can't it just get easier for her. 

This morning as I was feeding Ruby the same breakfast I feed her every day due to her limited options, she looked up at me and gave me the biggest oatmeal smile ever....for no reason at all! It has been 108 days since I first held our sweet little Roo in my arms and she not once just smiled at me for no reason at all. It usually requires me tickling her, singing silly songs or just being goofy that brings out a smile, and sometimes doing all three still results in a straight face. But this morning Ruby knew I needed a smile. She somehow seemed to know that my emotions were going to be challenged today and that today would be the perfect day to give me an unsolicited smile-one that melted my heart, made me cry and one I will never forget! 

I feel Ruby is bonding well with me but she does continue to show distance at times and I am still trying to earn her trust. Her much needed morning smile was a breakthrough moment for me. I feel as though she may begin to trust me more than being just a temporary caregiver. I pray everyday for her acceptance and love.  

Our paths lie before each of us, and even though we sometimes believe that we have “control” of our footing, we truly only stay steady and upright when we lean on God and have Him show us the way. 

Have a blessed week!

Janel 

Sometimes the smallest things take up the most room in your heart  --Winnie the Pooh