I went to the carnival fundraiser on Saturday and it was so fabulous that I can't believe I didn't get right to this update! We haven't been able to attend many of the fundraisers that have been held in Sophie's honor but this one was so close, and the timing was good so we went. I took little Sarah there for a little while and she loved it. She didn't want to get off the pony so they let her go again.
When I brought Sarah home for her nap, I convinced Marc to take Sophie. We've been a little apprehensive about taking her out in public because she was on the shy side before all of this, and now that she can't talk we are never sure if she feels comfortable or if new environments make her nervous. So at first Marc looked at me like I was crazy, but when Sophie nodded that she wanted to go, off they went. Now I wasn't there to see it, but my parents were and my Mom says that if Sophie could have smiled, she would have, and that her eyes lit up. Marc took her on the pony - after some resistance- and she painted a pumpkin. She did throw up while there, so that was difficult for Marc, but overall she enjoyed her short stay. And who wouldn't? It was really a phenomenal effort and for the kids too; throughout this journey, we've learned that there is nothing greater than the smile of a child.
I want to thank the six girls and fellow Avon Lake Preschool PTA members who planned, organized and executed the whole thing: Kim Walters, Elizabeth Gedeon, Andrea Bucci, Stacey Green, Staci Starr, and Michelle Polinko. I also want to thank all the other volunteers who helped work, plan, solicit, bake, donate and participate in the event. We thank Fr. Beatty and the employees of Holy Spirit church who provided the space for the event. After attending the carnival I couldn't believe that we actually attended all the churches in the area to make sure we picked the best one...Holy Spirit now seems like a no brainer - we love Holy Spirit, and not just because they shared their space, but because of the wonderful people we have met there and for the astounding prayer support we have received.
I got to the carnival thinking that I would be able to go around and talk to people and thank them personally, but after talking to a few, I realized that I was getting too choked up, so I decided to just enjoy the moment with plans to express our gratitude through this website. Again, we are overwhelmed by the outpouring of love and support from people all over Ohio and all over the country. We know we are blessed by God and we feel His love through all of you.
I know you are waiting for the part about Sophie..and I wish I could write that she received the miracle; maybe she has, and maybe she hasn't but we aren't giving up hope.
When I last updated she was having increased difficulty swallowing and was struggling to even open her mouth. We resorted to the use of a medicine dropper to get her some fluids and jello was the only "solid" she could eat. All her other symptoms seemed unchanged, but really couldn't have gotten any worse.
Since Sunday, Sophie's ability to swallow and open her mouth have improved slightly. This morning she took her first few sips from a cup and actually gulped them down. This week she has eaten things like soup, cereal, potatoes and small bites of chicken and has been able to very slowly, and with the help of some liquids, move them to the back of her mouth and swallow them. As of recently, we have been able to open the fingers and thumb on her right hand (the weak side) and also raise her arm above her head and straighten her elbow. She doesn't have the ability to do this on her own, but before, she was so stiff that we couldn't pull hard enough to move her. Same with her leg, I remember on Labor Day, her leg was so stiff and tight that I couldn't even bend her knee. Now it is much easier for me to bend, and she can keep it in a bent position until I move it again. So, of course we are ever hopeful that this machine is helping and Sophie is on her way to restored health, but we are also ever so cautious of the warning that there is often a "period of clarity" that presents itself before the tumor rears its fierce head and patients have their final turn for the worse.
Sophie has been trying to eat more, but unfortunately she has been vomiting a lot more in the past few days; as much as three times a day. Of course, this is concerning to us, because the vomiting indicates a change in pressure - usually from tumor growth - although the hospice nurse did say that any change in the tumor; an increase or even a decrease in size can change the pressure within the head causing vomiting. We pray that we could be so blessed with this second scenario.
Sophie has been having more difficulty sleeping, reminiscent of about a month ago, where she would wake up in the middle of the night, say 2:00am and stay awake until 4:30am. We aren't sure if it is pain that is waking her up. When the hospice nurse came on Monday, the report was that all Sophie's lung and heart sounds are normal and clear. She explained some ways that I would be able to tell if Sophie is experiencing pain; like flushed cheeks. We still ask Sophie many times throughout the day if anything hurts, and recently she has been giving us a thumbs up, but when we ask her to point to what hurts, she isn't so clear. At times it seems as though she is trying to tell us that her left leg hurts, but still we aren't sure because her answer always changes.
Today Sophie was more tired than usual. Her eyes appear to be very tired and most of the day she has a tough time keeping them open. She was pretty content staying in bed, but we did mange to get her outside for a short walk. Sometimes her eyes seem a little glassy, but they are definitely not permanently crossed anymore. At one time you could not see any white at all in the corner of the left eye, and very little in the right. Now, white is showing in both, and just today she was looking up as Marc threw a ball up in the air. It's so hard to know what is going on; we have seen small slight positive changes, but it doesn't change the fact that she is unable to walk, or talk, or support her own body wait by sitting up, let alone by standing.
We continue to pray and hope Sophie will get her miracle. We know God is capable of the miracle, and our prayer is that it is God's plan to grant Sophie the miracle. There are more and more children dying each month as a result of this tumor, so the hope and chance that Sophie will be the only one spared seems like one in a billion. But we won't give up on God, as we know He never gives up on us.
We are grateful for everyday we have with Sophie and know that she truly is a gift from God. Tonight I got a thumbs up after I told her "I love you." and right now that's about as good as any smile I could want to see.
I stumbled across this poem, and thought I would share it in hopes that all of you parents, grandparents, aunts, uncles and everyone else who has a special child(ren) in their life, would be inspired by our journey with Sophie and accept each day as a gift to be spent and cherished with the ones we love.
Just for this Day...
To my child...
Just for this morning, I am going to smile when I see your face, and laugh when I feel like crying.
Just for this morning, I will let you choose what you want to wear, and smile and say how perfect it is.
Just for this morning, I am going to step over the laundry, and pick you up and take you to the park to play.
Just for this morning, I will leave the dishes in the sink, and let you teach me how to put that puzzle of yours together.
Just for this afternoon, I will unplug the telephone and keep the computer off, and sit with you in the backyard and blow bubbles.
Just for this afternoon, I will not yell once, not even a tiny grumble when you scream and whine for the ice cream truck, and I will buy you one if he comes by.
Just for this afternoon, I won't worry about what you are going to be when you grow up, or second guess every decision I have made where you are concerned.
Just for this afternoon, I will let you help me bake cookies, and I won't stand over you trying to fix them.
Just for this afternoon, I will take us to McDonald's and buy us both a Happy Meal so you can have both toys.
Just for this evening, I will hold you in my arms and tell you a story about how you were born and how much I love you.
Just for this evening, I will let you splash in the tub and not get angry.
Just for this evening, I will let you stay up late while we sit on the porch and count all the stars.
Just for this evening, I will snuggle beside you for hours, and miss my favorite TV shows.
Just for this evening when I run my fingers through your hair as you pray, I will simply be grateful that God has given me the greatest gift ever given.
I will think about the mothers and fathers who are searching for their missing children; the mothers and fathers who are visiting their children's graves instead of their bedrooms; and the mothers and fathers who are in hospital rooms
watching their children suffer senselessly, and screaming inside that they can't handle it anymore.
And when I kiss you goodnight I will hold you a little tighter, and a little longer.
It is then, that I will thank God for you, and ask Him for nothing, except one more day...
-Sally Meyer copyright 1999
We thank you for your endless prayers and support. We ask that you continue to pray. I'm heading up to give Sophie a long hug and tell her I love her. God bless.
