Posted on March 21, 2017
Posted on March 21, 2017Monday March 20, 2017
Grace has had a pretty good week. She continued with her speech therapy and is learning new "sign" words. She is very good at "more", especially when it comes to chocolate.
Grace had a great weekend visiting family friends in Virginia and West Virginia. Grace got to meet many people that have been praying and supporting her over the last year and half. She also got to meet a few new babies that have been added to our friend's families.
Coming home on Sunday, Grace was not a happy camper. It was her third day without pooping. We had been giving her special meds all weekend, but there weren't working. On our trip back home, Grace ultimately was so uncomfortable and was in pain that she made herself throw up. The trip back was hard on everyone. She was still uncomfortable when we got home even though she did poop a little bit. It wasn't a great night either. First, she went to bed late because we kept giving more meds in hopes that she would poop more. Then she got up in the middle of the night, obviously still in pain. She eventually went back to sleep.
On the way to her routine clinic visit, the flood gates opened! I pulled off the road and got her cleaned up. She fell right to sleep and stayed asleep until we got to clinic. Her color was back and her happy self was back. All she needed to do was poop!! At clinic, she was given iv fluids since she didn't eat anything on Sunday. One day of not eating can make for a grueling week trying to get her hydrated again. Her counts were great! The doc checked her out and didn't find any noticeable issues, like an infection. We are just chalking this whole thing up to constipation.
On Sunday May 21, we are walking in the Hope and Heroes Annual Walk which supports the Hope and Heroes Children Cancer Fund, which funds research, integrative therapies and families in need at Columbia Presbyterian. We created a team: Grace's Gold Ribbon Gang. It's a short walk with lots of family fun on Pier 84 not the West Side of Manhattan near the Intrepid. If you are interested in walking with our team, please go to:
You can make a donation to the team if you can't walk.
We also started a tee shirt booster fundraising page. All the money raised will go to the Hope and Heroes Fund. You can purchase a short sleeve tee shirt, long sleeve, or a sweatshirt. All items are delivered after the close out date of April 20. If you plan to walk with us, we ask that you purchase a shirt to wear that day. You can purchase a item here: https://www.booster.com/graceskuches
Thank you all for your continued support! God Bless!
Posted on March 16, 2017
Posted on March 16, 2017Kenneth Skuches 15 March 2017
Gracie's numbers are back up! Monday was chemo day, Avastin. As Gracie received her infusion, we had the chance to do some art projects with Nitza, the Clinic Art Director. She is amazing with the kids! Messy!!!! But, amazing! No one ever said, art was neat and clean. Well, I did but no one listens to me! Anyway, Gracie loves all the paintings the other kids paint that hang on the wall. She points to her favorite ones during our strolls. The program is very special to our family! We have seen the creative side of Grace and her brother John.
Not much else going on except our surviving the big snow! We had about 16 inches. Best part about the storm was the cozying up by the fire. Unfortunately, that only lasted through the morning. After that John went over his friends house and hung out there. Daddy broke out the snowblower. The snow turned to rain and after two hours, I was soaked and freezing. I came in to a nice warm fire or so I thought but Jen let the fire go out and I with my numb fingers had to find a way to open my beer! Luckily, I am resourceful and prevailed!!!! I even stoked the fire and all ended up well. Since St Paddy's day falls on a Friday during lent, Jen made corned beef and cabbage and needless to say, the day ended as well as it started!
I wanted to continue my driving lessons in the snow but Jen didn't want me teaching kiddies this valuable lesson. So, I did a couple solo laps around the neighborhood improving my driving skills! Yup, we lead a pretty boring life! Well, boring to others, I love it!!!
Posted on March 7, 2017
Posted on March 7, 2017Our family is so grateful for the donations you have made to assist with Gracie's care. We are notified of your donation even if it is done anonymously. We are only given your name. No information on how to contact you. If while making a donation you feel you made an error, please contact YouCaring. They can assist you with corrections.