Ways You Can Help...

The other night when I posted I forgot to mention a couple things that I intended to include. As a parent watching my daughter fight this battle I have this incredible urge to do something that might help another family with a terminal child. Unfortunately because of the amount of time I have spent caring for Sophie in the past six months, I haven't been able to get up and running with my ideas. Many people have asked me many times what they could do to help, and I usually don't know what to say. Or I have had many people say, "I wish there was something I could do." Now there is! I am doing my best by giving all you wonderful and caring people an opportunity to help and raise awareness through the efforts of some other parents who have fought, or are fighting this DIPG battle. If everyone does one small thing, it could turn into a big step in finding a cure so that no other family will have to go through this. Honestly, I wouldn't wish this on my worst enemy...that is if I had any enemies!

The first way you can help is by visiting www.prayersfrommmaria.org and purchasing something from he gift shop or making a donation to help support their cause in fighting gliomas. Or you can visit www.thecurestartsnow.org and donate to their DIPG fighting fund or find other ways to help. Or, for those of you who like to buy things for other kids, visit http://www.helphannah.org/Page.aspx?id=19 and read about a family who is collecting toys for Christmas in honor of their daughter with a DIPG. Their goal is to collect 1000 toys to distribute to kids through their hospice organization. Since I'm not organized enough to raise awareness on my own, I thought the least I could do was pass this information on to all of you.

So how is Sophie? I wish I had a better answer, but we've actually seen some decline the past few days. She is having more trouble swallowing liquids; to the point where she coughs with each attempt at a small sip. I have been using a straw to drip small amounts into her mouth, and this seems to help a little. She still has a good appetite which bothers me because I wish she could just take a big bite of a chicken nugget like I know she wants to. She's been surviving on jello and softened Life cereal. It takes about 45 minutes of small bites on a baby spoon to get a 1/4 cup serving through the centimeter gap between her teeth. At time she thinks she is opening her mouth, but her teeth will be clenched shut. We may have to revisit the idea of the feeding tube so she won't have to suffer the feeling of being hungry.

She has been taking more naps in the last couple days, and sleeps pretty soundly when she is sleeping. Her nights have been better; although I am not sure if that is a good thing. At times I look at her and she seems to be staring off into space, and I have to repeat myself many times before she will answer me with a nod or a thumbs up/down. Marc says it is like she is trapped inside her head. I think of all the things she would be saying if she could talk, and it makes me realize that I can hardly remember what her voice sounded like.

She has been interested in books lately, and will sit and listen to a few stories at a time. This makes interacting with her a little easier, because for the most part it's hard to find things to say to her. Have you ever tried to carry on a conversation with someone who couldn't respond? Aside from reading, I have been singing little songs to her and telling her how much I love her. I also tell her about all the other people who love her too, and sometimes I share silly stories about baby Sarah (who we all call Yahoo). I try not to say too much because I'm not sure if Sophie feels sad that Yahoo can run circles around her and do way more than she can.

My parents took Yahoo home for a couple days and it's been very quiet around here. It makes this whole ordeal even more sad when I look at my 4 year old who should be making a racket, yet she sits in silence with her head slumped over as though she is not there. I continue to use the PER machine with Sophie because I haven't given up on her. I still believe she is not in pain and that is the best thing. Our hospice nurse canceled our visit on Thursday because of an emergency so I don't have a report on her vitals. We should know on Monday if everything still sounds good.

Please continue to pray for Sophie; that she may be pain free and if it's not too much to ask that this horrible tumor be removed from her little head! We thank you for your support and prayers.