Comments (3)

By Lana, September 3, 2009 8:54 am

Prayer request: Betty Short, one of the Beautiful Canvas community “members”, emailed us and asked for prayer for her son-in-law’s brother and his wife. They are expecting a new baby (will be born tomorrow!) and the baby has a cleft palette. The family is praying for total development, complete healing of any deformities or troubles, and sound body, soul and mind. Please keep this family in your prayers!

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Monday, August 24, 2009 we got up early and packed our minivan. Since we were already in upstate New York at the NY Grandparents’ house, we had about 6 hours to drive to Cape Cod. Carmen had been sick with pneumonia for 4 days but seemed to be doing better. So, off we went!

We really should have taken a picture of the minivan! According to Lauren, it was packed to the tippy-top. I think we had about 10 bags of just Carmen’s stuff. Medicines, medical supplies, chux pads, diapers, formula, feeding pump, nebulizer equipment, oxygen tanks, the Vest, suction machine, a bath chair, pediatric stroller, etc. I told Dave that I think we need to buy an RV to transport Carmen’s stuff around. (Several of the families with children with Tay Sachs travel in RVs and I think that is such a good idea!)

We decided to stop near Boston and visit Uncle Steve, Aunt Sarah and Nathan. They live in an adorable log cabin that really made us want to get out of planned communities and find a house with character. It was a short visit but was really fun.

After a long day, we arrived at Ocean Edge Resort and Golf Club in Brewster, MA. Connie, Carmen’s night nurse, was waiting at the hotel for us. Make-A-Wish flew her to Providence, RI and then provided a stretch limo for her two hour car ride! We were very happy to see Connie as we were very sleep-deprived from taking care of Carmen at night, especially since she had been so sick.

We went to bed early as we wanted to be well-rested for our week of adventures!

Comments (2)

By Lana, September 1, 2009 9:34 pm

Carmen update: Carmen is doing better. She had low-grade fevers off and on for over a week. We had to stop giving her Cipro (an antibiotic) half way through the course because she had blood in her feeding tube. Carmen has chronic gastrointestinal problems and her pediatrician thinks the antibiotics pushed her over the edge. These gastrointestinal problems may end up being very significant if Carmen cannot tolerate antibiotics in the future. Carmen is allergic to many of the first-line antibiotics so she is already at a disadvantage in fighting her recurrent aspiration pneumonias. She is still coughing some but her breathing is back to normal and she hasn’t had a fever in a few days. Thank you for your prayers.

Please also keep my dad and my brother, Kevin, in your prayers. My dad has been in the hospital for awhile and we are praying that his doctors know how best to treat him. My brother Kevin totaled his car this past Saturday. He is OK but very shaken up.

For the next few days, we are going to post about Carmen’s Make-A-Wish trip to Cape Cod. We had a wonderful time and think the trip was perfect for Carmen.

A few days before we left for Carmen’s trip, the Make-A-Wish representatives came over to deliver our itinerary. They also brought cake, cookies, drinks and roses! Big thanks to Heather and Leonard who did a super job through this whole process!

Here is a picture of Dave, me, Carmen, Heather and Leonard

Comments (6)

By Lana, March 18, 2009 8:22 am

Tonight we have our interview with Make-a-Wish. We have thought of something that we would love to do for Carmen’s wish. We are asking that you pray that Make-a-Wish will consider our idea.

I’m sorry I can’t give more details now but will tell you how it goes after the interview!

Have a great day!