Archive - September, 2009

Make-A-Wish Trip: Day 3

August 26, 2009 started like the previous day with breakfast in bed! (I could get used to that!) Lauren went to camp and Dave and I started getting everything ready for a trip to the beach. We googled Cape Cod beaches and Nauset Beach came up as family-friendly with bathrooms (very important!), lifeguards, rental umbrellas and chairs, concession stands, etc.

We picked up Lauren from camp, ate a quick Subway lunch and drove to Nauset Beach. It was a lovely day and perfect beach weather. Really perfect.

Dave and Lauren built a sandcastle, Lauren collected seashells and played in the waves, and Carmen took a nice nap. I walked along the water with Lauren but my feet were freezing! Having grown up in Texas, I have only experienced warm Gulf of Mexico waters. This was NOT warm! Lauren, of course, had no problem jumping right into the ice-cold water. I kept trying to get her to walk along the sand instead. Finally, she said, “I am going to get daddy. Every time a wave comes, you yell ‘Run’!”

We stayed at the beach for the afternoon and really could have stayed for hours more but the sun was setting and it was time for dinner and bed.

Looking back, this was our favorite Make-A-Wish trip day. Carmen was so very comfortable. And she got to experience the ocean.

Asleep on the beach

Carmen Enjoys a Nice Nap at Nauset Beach, MA

Awake and listening to the sounds of the ocean

Carmen in Front of Water at Nauset Beach, MA

Me, hanging out on the beach

Lana Sittin' Pretty at Nauset Beach, MA

A few interesting pictures by Dave

Bird at the Beach

Nauset Beach Fence

Beach Sky, Nauset Beach, MA

Make-A-Wish Trip: Day 2

Carmen update: Carmen woke up with another fever. Yesterday I took her to her pediatrician and he suggested we wait on another antibiotic since the last one irritated her stomach. Hopefully she will get through this quickly!

***

August 25, 2009 started with room service. Lauren was so excited to eat breakfast in bed! She got a bagel with cream cheese, Dave got French toast and I got an omelet with tomatoes and cheese. After breakfast we picked up Carmen from Connie’s room across the hall and Dave took Lauren to Ocean EdgeVenture at 9:00, the resort’s day camp for kids.

Dave and I then had the morning to explore the grounds and relax. Ocean Edge Resort is a lovely property but we mistakenly thought we were staying on the beach. The resort does have a private swamp beach on the bay side of the cape but we soon realized we would be driving to a real beach with sand and waves!

The weather was perfect, mid-70s, and Carmen seemed to enjoy being outside. We don’t take her outside much so we were very happy to have perfect weather (and that perfect weather continued for the rest of the week!).

Here is a picture of Carmen enjoying the nice weather at Ocean Edge.

Carmen in her stroller at Ocean Edge Resort

We picked up Lauren from camp at 1:30. She was so excited to tell us about her day: swimming, the playground, more swimming, arts and crafts, lunch, a new friend who gave her a bracelet, etc.

We stopped at Subway for sandwiches and then headed to Chatham, MA for the afternoon. Chatham is one of those cute little towns with lots of shops and touristy places. We walked around for awhile and got ice cream and some Cape Cod peppermint salt water taffy. I am normally a total chocolate kind of girl but I got strawberry ice cream and it was wonderful! (Strange pregnancy hormones!). Lauren got her usual, cookies ‘n cream, and Dave got chocolate peanut butter.

Here is a picture of Lauren and me, eating ice cream.

Lauren and Lana Eating Ice Cream in Chatham, MA

And here is a picture of the salt water taffy bins. The peppermint taffy was wonderful!

Cape Cod Salt Water Taffy

After ice cream, we stopped to rest. A bench would have sufficed but rocking chairs were even better!

Carmen, Dave, and Lauren resting

On our way back to Ocean Edge, we passed Chatham Beach and decided to stop. Carmen was asleep so I stayed in the car while Dave took Lauren down to the water for a little while.

Dave got some great pictures! (The Canon 24-70 is a fabulous lens and we LOVED having it for our trip! Thanks again to Lens Rentals! Thanks to Stephanie who paid for the shipping! )

Lauren Approaching Waves at Chatham Beach

Lauren Running From Waves at Chatham Beach, MA

Lauren's Footprint in the Chatham Beach Sand

For dinner, we stopped at clam shack called Cobie’s. We didn’t get clams but enjoyed hamburgers and chicken nuggets.

We returned Carmen to Connie and then we all went to bed!

Make-A-Wish Trip: Day 1

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!

***

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!

Ocean Edge Sign

Make-A-Wish Meeting

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

Make-A-Wish Meeting

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