Today's Appt

Admiring her big sister!

Climbed/Fell in the toybox while getting ready to leave in the morning! She is becoming quite the monkey!

Well I saw the Dr again this morning. He thought her balloons looked really good. Her large hypertrophic scar on her side will be removed at the next surgery, she may have more that get big though, he said later in life we will do surgeries just to improve the scars as needed. Interesting concept, scars to fix scars. So knowing summers busyness and vacations I pressed him for an ETA on surgery, he said June they will be "full" but then we over fill and expand as able, wanting to avoid August all together due to vacation(s) we are aiming for Sept (gulp) 6 more months. This led me to ask for tips on the shots because they are getting SO hard, it is impossible to stabilize/restrain her belly and she knows how to roll it around to avoid the needle so its like playing darts with a moving target but much more important that you don't miss. He gave me a sympathetic smile and said he had no advice, this is a problem with her age and an indication that after this round we may take a break for awhile until she is in a more bribeable age (like Grace) which is all the more reason to get AS MUCH as we can this time so we are setting our sites on September, unless something goes wrong and they need to come out earlier. Finally, not to beat a dead horse, I took the plunge and challenged him one more time to explain the MRI results, and he clarified that it was indeed clear. However I said "good I can rest easy that that is clear" and he did suggest there were no guarantees that it was forever clear, I am taking it as good news unless told otherwise! So all in all a good appt, although I am exhausted thinking of six more months and seeing my husbands shoulders and face fall when I told him this as well I agree that we need to continue to get as much as possible. We will soldier on, we do shots Wed, Fri, Sat and Sun nights between 6:30 and 7 and would appreciate prayers for this process, as those of you who have witnessed it know its a tough job! An added praise was how well behaved big sister Grace was at the appt this morning, that always helps me get through these difficult appts. Have a great week everyone. Amanda

They say honesty is the best policy (deep breath) so here goes....

So I haven't posted in SOOOOO long. Sophie has been a busy little one year old to chase after. I am attaching video of her walking and in her new "squeakers" my sister got her for her birthday that she finally fits in. I think the funniest thing is that she is oblivious to the sound coming from her feet. You can also get a glimpse of her quasimotoesque bulges growing in both her front and back.


Shots have been going pretty well this time around, as good as they can I guess. I would say the more we do them the more she fights back but all in all its only like a bad five minutes of my day. Some other blessings is that we have had to use less pieces to the injections and the medical suppliers deliver to our house which is so wonderful. She has also had a string of ear infections and with signs of spring all around us Craig and I feel like a couple of bears emerging from hibernation and we are so anxious for warmer weather, less time couped up indoors, less illness and more fun family time.

Craig has been under a bit of stress with taking a class and his less then ideal teaching job and the changes in his job he will likely face this summer. All that to say that when we open the window and feel those first gusts of chilly spring air our entire household seems to take a collective breath of relief. Change is coming, its part of life that we can't control and it keeps on coming and no matter what you do to "prepare" there will be new circumstances that throw you for a loop. Our situation with Sophie is teaching me that. I have been holding so much inside, wanting someone or something to blame, even if it is myself; wanting to believe that I could get the whole thing taken care and magically erased before she was old enough to know what was going on, wanting to believe that things I want and feel are just out of reach in my life are a physical example of my lacking, not deserving or just plain suffering at the injustice of it all. Yesterday our pastor delivered a sermon almost directly to me in that regard. I was humbled and in some ways freed from these expectations that we have to hide all the bad in our life and slap a fake smile on our face and keep working on "pleasing" God. The truth, that we are all flawed and hurting and need grace and forgiveness and sometimes a swift kick in the pants is so much more vulnerable and honest and even shameful. I have been struggling for many years with health issues and sometimes I feel as though I have been buried under a heap of rubble and will never claw my way out. With Sophie I feel this intense pressure to change who I am to be a better example for her. How can I teach her to be proud of herself and stand tall and strong despite her innumerable polka dots and growing scars if her own mother hides in shame and wears a mask? I am stating now before God and these witnesses that I am crawling out from my pile of debris and making my changes, one painful change at a time. I have changed the way I am feeding my family jumping on the clean eating train with my parents and other friends. I am cutting out time wasters and playing with my kids more. I am engaging in productive activities so at the end of the day I can stand tall and say look what I have accomplished today and be more proud than ashamed. Its been a tough month but I am trying to make changes that will last for my family, after all I am a Mother, its what we do. Nicole Nordeman wrote a song called Brave when her first child was born talking about the strong tug on your heart when you are a parent to be better. "So long status quo, I think I just let go. You make me want to be brave. The way it always was is no longer good enough, you make me want to be brave." I feel strongly that even if the walls of this little house are the closest I see to a mission field I need to serve God to the best of my ability in my home. There are so many wonderful things that I so richly was blessed with growing up in a home saturated with love from Godly parents. I want my girls to grow up with those same memories.
Finally I was sent an email with this video that I have linked at the top of the blog. It humbled me beyond measure. I pray God will give me a servants heart for Sophie like the Dad in this video and that he will bless her with the same enduring spirit and steadfast love that this young man exhibits. Please take a moment to watch it and be blessed.
Carrying on in bravery and trust....Amanda