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.

Julie on March 16th, 2010 at 11:56 pm #

Ooh, side trip the Bay Area, right? (=

The RV sounds like the perfect solution. So glad for you guys!

Jill E G on March 17th, 2010 at 3:28 am #

I’m so glad you have found a way for easier travel. I hope you guys are having a fun time. You all deserve some fun.

Brendan on March 17th, 2010 at 3:44 am #

Can you say ROAD TRIP? When you go to FL next, you need to go through Atlanta, RIGHT?? I have 68 feet of driveway…never mind the 8% grade.

Glad to hear that you are settling into the ever changing “new normal”.

Steve and Joan on March 17th, 2010 at 7:03 am #

So happy you both have work and the projects are ccontinuing to come in…The RV is a good solution. Miss Ella you look SO great. Pretty as ever and so happy. Enjoy your travels and prayers always. Steve and Joan

Marla on March 17th, 2010 at 7:13 am #

Wow what a great family adventure! Not sure I could get any work done in such beautiful surroundings. God bless you on your travels. Love to all!

Elizabeth Norman on March 17th, 2010 at 7:25 am #

We would love to see you and meet Miss Ella and you too here in Temecula.

Eve Johnson on March 17th, 2010 at 7:38 am #

You guys are perfectly, beautifully crazy! I love it! And so cool that the pets can travel along too. Brillinat. Ella is beautiful as always. I’m thrilled to hear that she’s doing so well. God’s love and blessings to all,

Jennifer Harris on March 17th, 2010 at 8:05 am #

AWESOME! What a blessing to spend quality time with your family while enjoying the Lord’s visual gifts. Ella looks beautiful and happy. Thank you, again, for sharing…

Dawn Franck on March 17th, 2010 at 8:16 am #

Hey girl, I’m so happy for you guys, that RV is awesome. We are going to be in Cali. next week I’ll call you and hopefully we can meet up. Take care, Dawn

Pat Hadden on March 17th, 2010 at 8:21 am #

So glad you’re visiting Lynn & Richard! I know that is one proud Grandma. Enjoy! Much love.

Loren Lizotte on March 17th, 2010 at 8:48 am #

Ella is just too happy in that picture. wow!!! How cool is that, you guys have a motor home. I must admit it never sounded so cool until you sold me on the idea. I will certainly pray for your projects to do great, for the bus to keep working great for you, and for all of you to stay in good health!

God Bless!!!

Michelle Herman Skeels on March 17th, 2010 at 8:48 am #

What a great solution! So nice to be able to avoid the pack-unpack-pack-unpack activity! You all look healthy and happy – nice to see!

Geoffrey on March 17th, 2010 at 8:51 am #

So happy for you guys! The picture of Josh and Ella sitting by the pool is beautiful! Have an AWESOME time on your many upcoming adventures!!!

Marge (A Friend in Indiana) on March 17th, 2010 at 9:17 am #

Great idea……travel, work and family; it just doesn’t get any better than that. Ella looks wonderful; happy to hear that she is doing well. Continued prayers for all of you; be safe in your travels and thanks for sharing with all of us….it’s good to hear from you.

Jen Knab on March 17th, 2010 at 10:42 am #

I love the new ride! Who would know that there would be such nice accommodations inside. Wow! Ella looks SO happy and healthy. Have a wonderful time and enjoy CA. Take care and have a happy St. Patrick’s Day! 🙂

Kara on March 17th, 2010 at 11:28 am #

Awe, so glad you have a better way to do things now. Love and miss you all.

Gloria & Red Jacobsen on March 17th, 2010 at 12:59 pm #

Ella looks wonderful and we’re so glad your RV vacation is going well. Your always in our prayers.

Jenny Talbott on March 17th, 2010 at 1:25 pm #

Think about you all so very often… so nice to see all the smiles…

Lidia Boicu on March 17th, 2010 at 2:12 pm #

heading to texas any time soon?

Williamsburg on March 17th, 2010 at 4:02 pm #

Wow, you guys. I could not be more thrilled that the RV is meeting so many of your needs for a change of scenery and mobility while still offering a functional home base for all of you. I can’t imagine the challenges involved with trying to keep up with work with all the other stuff to juggle, but so grateful for how the Lord has provided a way to keep flexibly employed for both of you. Thanks for updating us. Look forward to getting together again when you get ‘home.’ Much love, XOXOXO

Matthew Moore on March 17th, 2010 at 10:10 pm #

RV’n how fun. Looks and sounds like that phrase “just what the doctor order.” Glad to see you’re taking every advantage of life and enjoying the hills and valleys (pun intended)!

julie kirk on March 18th, 2010 at 7:10 am #

awesome idea!!!!!

Rainey Family on March 18th, 2010 at 9:12 pm #

That is so cool! What a great solution for you guys. If you have time while you’re still here, we’d love to see you guys. 🙂

Missy payne on March 24th, 2010 at 7:56 am #

It’s really nice to see you guys lovin’ the “rv lifestyle” Ella looks really happy and so do the two of you. We got a foot and a half of snow last night. The pics of you guys enjoying that beautiful socal home are making me homesick!!! Take care and keep lovin’ every minute!

Joel snyder on April 15th, 2010 at 3:31 am #

Ella,Josh,Tina glad to see that the trip is going good. Nice that you could visit your friends in Phoenix. Catch you later. Love,Grandpa!!!!

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