Capri is now 21 months old. She is finally growing and catching up to normal almost 2 year olds. She started walking on her own last week! Physical therapy every week for 10 months and I finally have a toddler who can walk! Its such a different feeling watching her reach these milestones vs watching A or B hit them. Of course I was excited and beyond proud that my babies were growing up but with Capri we have worked SO hard for this. She still seems so tiny to me, like she still needs to be an infant in my arms. I have to remind myself that she is almost 2 and becoming a toddler.
Her GI doctor has decided that her heart is not stable enough to give her a Gtube (a tube surgically implanted into her stomach to feed her from a bag) so he put her on a medication called cyproheptadine. It makes her so hungry that we are constantly feeding her which is great. She is on the curve for the first time in her life at 2% for her weight :) slowly but surely we are getting there. She is still on oxygen full time but we have started trying to let her be tube free when we leave the house. She still swells but not nearly as fast.
We have been pretty quite in our household making ends meet and making sure that we are doing the best for our family. My husband is in the process of starting a new job and has been able to spend some time at home with us which has been wonderful. We have gotten things done around the house that have been neglected and he has gotten to volunteer in A's kindergarten class and watched B during dance class. I have been selling baked goods and cleaning out all of the clutter from our house. We have been so blessed to have this transition go smoothly and not be overwhelmed with the fear of the unknown. If Capri has taught us anything its that as long as we are all alive, everything else will fall into place. With struggles comes learning and growing. Understanding what makes us better people and what truly are the most important things in life.
Losing my grandma is still something I struggle with everyday. I don't know how long it takes for that ache to subside. I think of my friends who have lost their children and I honestly don't know how they even function on a daily basis. I have a blanket that I kept from my grandmas house and whenever I am sad I wrap myself tight with it and can still smell my buba. That smell is almost gone. That is what makes me feel okay as silly as it is. When I don't have that reminder anymore I don't know what I will do to make that pit in my stomach go away. I am so grateful that Capris purpose in life was to get to stay with us. I can not fathom her not being here with me today. I push those thoughts deep down inside me and pray that I will never have to deal with them. That every month as she gets stronger, her heart will get better. That in time this will all be a distant memory of hospital stays and life threating moments. Their is nothing more in this world that I want.