Our first stop was Hannibal, MO -- the boyhood home of Mark Twain. It is a cute little town and Jeff, Ethan and I walked down the little main street looking into shops and reading signs about the historical significance of the buildings. It was WARM but it was fun.
Then we headed to our actual destination -- which was a generous gift from Jeff's parents -- a few nights at a resort. We had actually wanted to go somewhere else but since those locations weren't available we ended up with Clarksville, MO since Jeff was only going to be able to take a Friday and a Monday off of work and we didn't want to travel to far with Ethan.
The resort itself was nice enough, but was definitely designed for families with older children in mind. Those who would enjoy the outdoors - fishing, paddle boating, canoeing, playing miniature golf and swimming. It was a blessing though to have some time to escape the world -- we were in the middle of nowhere and to be a family.
On Saturday afternoon the Maag family, who live just a little over an hour from where we were staying, came to visit. My friend Vicky brought her two lovely daughters - Clancy (8) and Kenna (3). Unfortunately her hubby, Shannon, had to work this weekend and couldn't make it. We had a great time, we visited, swam, at dinner, and then braved a bit of a thunderstorm together before they had to head home. We are very blessed to call the Maag's our friends. Vicky and I are sisters in the PBD journey and fellow sisters in Christ.
Ethan didn't nap Saturday except for about 15 minutes in the car on our drive from the grocery store back to the resort that afternoon, so he was not very happy as the evening came. He hadn't been eating well and had been refusing his bottle all together. So, when he went to sleep at 7:30pm we thought - WOW - this is going to be great if it lasts. Well, it didn't! Ethan was up from 1am to almost 4:30am. My amazing husband Jeff, let me go back to bed from 2am to 4am. Then at 4am we all got in the car and drove in the middle of nowhere until Ethan feel asleep. During our 4am drive along MO Highway N we talked about whether or not we could do this another night away from home or if we should head back home earlier than originally planned -- it is one thing to be up in the middle of night at home when your 22 month old won't eat, sleep, drink or poop, but doing it while away from home is even tougher! So a little before 5am this morning everyone was back in bed a Jeff and I were hoping that we'd all get SEVERAL more hours of sleep, but that wasn't Ethan's plan. He was back up at 7am!!
After refusing the bottle again, and playing for a while at 8am I tried to get him to eat. His screaming of course woke up Jeff who was so kind as to come out and help rather than but a pillow over his head to try to block out the noise. Have I told everyone I am married to a really great guy? He is a great husband and father! Since Ethan was still not drinking, wasn't eating well, was very grumpy and still constipated we decided that we would go swimming one more time (the pool opened at 10am) then have lunch (we'd bough a frozen pizza the day before from the grocery store in Louisiana, MO) and then we'd back up and head home --- hoping that Ethan would take a nap on the drive home.
We got to the pool a little after 10am and the maintenance guy was doing a few last minute things, since the storm the night before had blown a lot of leaves, grass, etc. into the pool area, so we hung out for a few minutes while he finished up. The neatest thing was that we had the whole pool to ourselves. We hung out in the kiddie pool for a while, then went to the larger pool. Ethan really enjoys "swimming." He LOVES to splash! After having some fun we headed back to our place to have lunch and pack up. Ethan still wouldn't drink much and didn't want to eat, so we all got cleaned up, Jeff and I ate, we got a little food in Ethan and we got packed up and hit the road for home. Ethan didn't sleep as much as we thought he would on the ride home, although my once again amazing husband did let me have a nice long nap. :)
When we got home Ethan was so HAPPY to have his toys back and to be home. He still did not want to eat or drink though. We got a little bit of applesauce and fruit puree in him for dinner with Jeff holding him, since he would not tolerate the high chair at all. We tried to put him to bed at nine, but that wasn't happening and he just screamed and jerked his body around whenever we got the bottle near him. A little before ten though he was finally tired enough that he allowed me to hold him and he drank a whole 8 oz bottle, fell asleep and I was able to put him to bed! Praise the Lord! This was the most he had drank since Wednesday!!!
Hopefully we will all get some much needed rest tonight!
- Pray that Ethan would eat, sleep, drink, and poop like he needs too!
- Please pray that Ethan would not have these type of troubles when we travel at the end of next month to the GFPD Family Support Conference in Orlando, FL. Pray that he would become a better traveler and that we would realize it is okay to eat, drink, sleep and poop when you are away from home.
- Pray that Ethan would continue to grow and develop, that he would remain healthy and happy.
- Please pray that the doctors, scientists, and researchers studying PBDs will be able to get the funding needed to keep working to find treatments that would help our children. The specialists who have dedicated themselves to researching rare diseases are having a really tough time keeping their labs and projects up and running and while they would like to start new projects or trials they need the funding to be able to do so.
- Pray for the upcoming GFPD Family Support Conference. There are going to be over 100 families from the US, Canada, and possibly a few other countries coming to the 2nd annual GFPD Conference. Please pray for my friends Shannon and Melissa and the rest of the GFPD Board of Directors as they finalize the details.
- Pray for all families whose lives have been changed forever due to PBD. Please pray specifically for those who have recently received a PBD diagnosis and for those who have had children pass away.