Posted (Tina) in All Posts on March-16-2010

I know, I feel guilty. It has been FOREVER since we did a post. Actually, it has only been since Feb 7th, which was 37 days ago. It is definitely the longest stretch. So, I will try to do my best and summarize.

Once we got home from the hospital, it took about 2 weeks to regulate Ella’s new food and feeding plan. We tried different amounts of Miralax as well as different feeding amounts at different times throughout the day. Right now, we are still trying to perfect it, but we’re on 5 feeds per day with 2 smaller doses of Miralax throughout the day. She has stabilized around 33 pounds and does not appear to be gaining any weight; just maintaining nicely. You can tell that she feels good. And when we feed her or vent her for gas from her g-tube, there is no bile being returned. Her system is working and she feels good!

Josh’s work has still been slow, but has started to pick up this month. For me, I’ve been given an opportunity to do some contract work from home too. Since that started, it’s been a little challenging to juggle both of us working at the same time while still managing Ella’s care along with puppy Lola. So it’s been a bit stressful and that is why you have not seen any updates. Literally, it has been a crazy, busy process with this change.

Also, we have some exciting news. We have been “stuck” at home so often and felt we needed a reprieve. So after months of research, we took our crazy idea and purchased an RV. Travel options are limited with Ella, but we knew we needed to figure something out. For example, we need to have a better way to visit family in California and visit Dr. Kays and nurses in Florida!

When we tried our first trip in our car last year, it was challenging. We stayed at hotels, packed and unpacked a bag on the luggage rack of the car with her concentrator taking up half of the trunk. We carried lots of oxygen tanks with us which isn’t exactly safe. But with all of Ella’s medical equipment, medications requiring refrigeration, and many other things, it was a long process each time we needed to stop. Along the way, if we needed to feed via g-tube or change a diaper, we had to find a place to stop. Thus, a motorhome seemed like the perfect solution for our travel needs. Ella can be fed, take a nap, hang out and play, have a diaper changed…and Josh can still be driving.

Here are some pictures of our new home on wheels. We thought about taking a picture of Lola in stride and sticking a graphic on the side of the RV.

Since this is a used RV and is quite old, there have been several repairs and things to update. The list is still long, but there were some critical items that needed to be attended to before we could go on a trip. We’ve never had an RV before, so there has been a learning curve too. Josh has been amazing – – he’s just gotten his hands dirty and figured it out. So after lots of hard work, we decided it was time to go on our first trip.

After discussion, we decided that we cannot really afford to just go on vacation and not work. If God provides the means to work, we need to take advantage of every opportunity. The nice part is that both of our work can be done remotely on the road, so we can travel in the RV and still work.

About 10 days ago, we left home and headed for CA. Ella loves being in the RV. She loved going for a ride in the car, but the RV is even that much better. She watches her videos and looks out the windows in her big play area. Lola is scared of the RV when it is in motion, so she panted at first and would pace from the front to the end of the RV. Now, she hides under the passenger seat. Macy (the cat) just takes to my side of the bed and sleeps under the comforter all day. It is nice to have the pets along with us too.

First, we had to stop in Phoenix and stay with some friends. The hospitality was amazing and the dinners were so delicious, that we ended up staying for 5 days! We parked in their driveway, worked during the day and spent time with our friends in the evening. It was great to have a change of scenery.

Last Saturday, we arrived in Southern CA and parked at my aunt’s house. We spent a couple of nights there and had a great family dinner. Now, we are parked in front of Grandma West’s house and getting in some more family time. It has been great to have our home on wheels. We just park outside and don’t have to unpack. When we’re done visiting, we go back in the RV. Truly, it’s been a great deal.

The only challenge is work. Josh and I both have projects and are being blessed with lots of work. We’re just a bit stressed because we are trying to take turns while watching Ella, taking care of the puppy, and visiting with family. Please lift us up in prayer – – that the Lord will keep us safe in our travels, the RV will stay in one piece and that we will be good servants with the work He has provided.

We plan to head back to Denver by the end of the month. In the meantime, we’re just living our life on the road and enjoying the limited time with family and friends between work. We’ll try to post more pictures of our journey over the coming days.