Showing posts with label feeding tube. Show all posts
Showing posts with label feeding tube. Show all posts

Thursday, November 12, 2020

Faith's New Van

Finally, on November 4th, the day the elevator in our building was fixed, I was able to take Faith downstairs so she could check out her new van! It happened to be a beautiful day, close to 80 degrees, which is rare for North Dakota in November. We had respite care that day, so I had her record me getting Faith loaded up for the first time.  

Faith is all smiles about her new van!

Faith is ready to roll!
After loading her up, the three of us went for a fun drive including a trip through McDonald's so Faith could get a chocolate chip cookie. Faith was having so much fun as we drove around. She kept randomly shouting out things like, "Happy Birthday!" and "Merry Christmas!" (I am looking forward to driving around and looking at Christmas lights with her this year!) I guess she really does think her van is the best gift ever! 

Faith inside the van.

Earlier this week, we used the van to take her to an appointment with the general surgeon. She wanted to check Faith's stoma for her feeding tube. I'm glad to say we are making progress with getting her skin back to normal. 

We also used the van to take Faith to Inspire Collective, her homeschooling group, which finally started up this month! It is a very small group this year, but we are okay with that. Two of Faith's best friends aren't going this year, so we drove to their house so Faith could see them from a distance. It had been 8 months since we last saw them in person! 

After visiting them, we drove out to her grandparent's place. My great niece said she wanted a van likes Faith's for her 5th birthday! Faith has a few more upcoming appointments this month, and it so nice for me to take her to these appointments by myself. 

This van is such a huge blessing, and makes life so much easier. A few of my favorite features are the heated steering wheel and seats, as well as the remote starter. These features will help us get through out brutal winters! One of Faith's favorite features of the van is that the doors open and shut all by themselves. Of course we both love the ramp that comes out and goes back in with just a push of a button. One feature I have yet to show her is the DVD player! 

 




I will never take our van for granted and will always be thankful to those of you who donated to our NewWheelsForFaith fundraiser. There were also many people who shared the fundraiser on social media and prayed that this van would become a reality for us. It floors me that people we have never met also gave to or shared this fundraiser. I will also always be eternally grateful to my brother Todd, and his wife for everything they did to make this happen. We appreciate you all so much!

One more thing: for those who are wondering, the van is a 2015 Chrysler Town & Country with about 49,000 miles. The conversion is new enough that it is still under warranty. We got the van from Cummings Mobility in Albertville, MN. If anyone needs a new conversion van, I highly recommend them, as they were very accommodating and gave us a great deal!

Sunday, March 2, 2014

Catching Up

This is my first post of the new year and it is already March - I guess I have some catching up to do! As you can tell by my new blog header, I am ready for spring. It has been a very cold winter here in North Dakota with several days below zero since December. I know though that much of the country has had a tough winter too so I know we are not alone in being anxious for spring and the warmer weather that comes along with it.

Faith especially seems to be struggling with the colder temps - it most likely affects her already high tone. It hasn't helped that it is more difficult to transport her since we can't use our van's ramp due to our door needing to be replaced. Rob has had to get her into the other side of our van which entails him sort of lifting her chair up into the van. We are looking forward to finally getting it fixed this week. 

Now that I've gotten our weather-related issues out of the way, here is an update on what the rest of this New Year has been like for us: 


We kicked off the year getting together with friends at China Star – a place we haven’t been for a while. We used to go there so much that all of the staff knew us by name and loved visiting with Faith. They seemed glad to see us and couldn’t believe how much Faith has grown. Over Christmas break she had a growth spurt and she is up to 48 inches tall! We haven’t weighed her recently but her last weight was around 55 pounds. 

After eating at China Star, our friend, Bob came over to watch Monsters University with us. His wife Lola was in California with her sister and got to go the Rose Bowl Parade.
Happy New Year!

We snuck in eating at the China Star right before our church fast began. The fast lasted 21 days and as part of my goal this year to eat better and get healthier, I bought a juicer. During our fast, I didn’t eat any processed foods or refined sugars and my supper consisted of a glass of fresh vegetable juice. Part of the reason I wanted to try juicing was to get some of those micronutrients into Faith via her feeding tube.   

We recently got a Vitamix blender and I have made some delicious green smoothies and even broccoli cheese soup! We are also going to try to get Faith started on a blenderized diet so she can start “eating” healthier too. 
Getting green goodness into Faith's tummy

Besides eating better, I have started going to the chiropractor which has helped immensely with my headaches. Faith is down to one visit a week but she’s currently trying something new with a lady who comes to our home twice a month for music integration. Faith absolutely loves it and I will be writing more about it in another post. 

Speaking of music, Faith just had her music program at school last week. In the middle of the program, Faith’s music teacher wheeled her to center stage with a group of kids. I wasn’t quite sure what was going on and before I knew it, her teacher was putting a recorder in her hand and then Faith blew some notes! It happened so fast that I didn’t have time to get in place to get a good picture. We were so proud of her! 
Faith working with Jonnica on the xylophone
Last month Rob and I both celebrated our birthdays. I turned the big 4-0 and although I didn’t have the actual day of my birthday off from work (too many people had already requested it off since it was the day after the Super Bowl) I did take the next day off and got to spend it with my mom. 

We went to the East 40 for lunch, went shopping and then relaxed at the spa getting pedicures. We both agreed we needed to do that together more often – we had so much fun! For Rob’s birthday, we went out to eat together and while we were out and about, Michelle and Faith surprised him with a birthday cake.  
Me and mom and my birthday
Happy Birthday to our favorite guy!
That about sums up 2014 for us so far. We are looking forward to what the rest of the year has for us and are believing for great things this year! By the way, besides updating my blog header and layout, I have updated "Our Faith Story" so click on the tab and be sure to check it out. I have also added a list of resources that have greatly benefited our family. Thanks for reading and have a blessed rest of the year! THINK SPRING!

Friday, November 29, 2013

What Faith is Thankful For

As a child who has a feeding tube, Faith doesn't really have reason to look forward to a big Thanksgiving dinner. Throw in the fact that she has not been feeling well this past week and woke up yesterday morning crying and gagging on mucous, she didn't have much of a Thanksgiving.

So for her Thanksgiving celebration,  I told her that we could make a list of things she is thankful for and she was happy doing just that. She also had me help her write little letters to her friends and family saying things like, "Thank you for coming to church" or "Thank you for letting me come visit you."

It was really sweet and she came up with about 20 people she wanted to write letters for. I think this says a lot - that she is simply thankful for the people in her life.

Thankfully, she feels much better today.

Here is her list for things she is thankful for: 


Faith doesn't miss Wheel even
when we'ere on vacation!
  • Mommy and Daddy
  • Wheel of Fortune
  • Big hugs and kisses
  • Having a sleepover with her grandma (we haven't actually done this yet but she is obviously looking forward to it!) 
  • Baby Allie - her doll she's had since she was a baby
  • Yogurt and chocolate
  • Bedtime with Elmo DVD
  • Going to church
  • Watching her PBS shows
  • Her bed with her pink cupcake sheets

I think making her list is going to be the start of a great Thanksgiving tradition! To see my list of things I have been especially thankful for this year, click HERE.

Thursday, August 29, 2013

Getting Used to Our New School Schedule

Today marks Faith's 8th day of school and we are all adjusting to a new schedule. Faith has made huge strides this past summer in sleeping better and having more energy so we decided to have her go to school from 9:00 a.m. to 3:00 p.m. 5 days a week. This is a change as last year she did not go Tuesday and Thursday afternoons due to how tired and worn out she would get.
Faith's first day of 4th grade
School starts at 8:30 a.m. but we asked if it would be okay for us to get her there at 9:00 instead. This allows us to more time to get her first feeding into her before she even gets to school. Her aides noticed last year that when we brought her to school without any food in her tummy, she was pretty sluggish and tired upon arrival. Sometimes, after getting her to school she wouldn't start getting her feeding until after 9:00 a.m. which meant, that because she gets a feeding every 3 hours, her last feeding of the day didn't end until 10:00 p.m.

Another advantage to the new school schedule is she has more time to wake up and not have to rush to get out the door. Our mornings are much more relaxed and stress-free than they used to be. It also gives us a chance to change her diaper right before she gets to school. Last year, they had to wait until after her feeding to get her changed and there were times her diaper would be so wet it would soak through onto her chair. This of course was pretty embarrassing for her and she didn't even want to go back to school the next day after having one of these unfortunate episodes.
Me and Faith right before taking her inside for her first day of school
There are a few things we are attributing to Faith sleeping better and having more energy to get through the day. One is the ABM we have been doing with her and another is her chiropractic care and the adjustments she has been receiving all summer long.  Because of both of these new types of treatment, we are noticing her behavior has improved as well.

In the past, when getting ready for school and not wanting to go, she would scream and cry (at the top of her lungs) for at least half an hour sometimes. It took both me and Rob and all of our energy just to get her dressed, put in her chair and out the door.

She still has some mornings where she's not too thrilled about having to get her feeding done before going to school (it's probably because she doesn't get to spend as much time with one of her favorite people - the school nurse who sets up her feedings). Her crying episodes are now usually less than 10 minutes long (sometimes even only a few minutes) before she is able to settle down. And even better is the fact that she no longer screams at the top of her longs - which I'm sure the neighbors are glad about!
Daddy rolls Faith into her new classroom
Besides a new morning schedule, we're also getting used to a new evening schedule. After Faith comes home from school, she is due for a feeding. When I come home from work, I get supper going, we watch Wheel of Fortune and then it is off to her bath. She starts her last feeding between 7:30-8:00 which is a huge improvement from starting at 9:00 p.m.

She's usually in her bed at 9:00 and after reading a bedtime story, she tries to fall asleep. Sometimes this takes a while for her. We often hear her in her room laughing or talking to herself or kicking her legs around. This can last up to 30 minutes before she finally falls asleep. She usually wakes up only once at night and Rob will go in and turn her on her side but again, a huge improvement from waking up several times during the night.
Faith at her desk
We put a lot of prayer into her school schedule for the year and it seems it is working very well for us. It's definitely been a nice and somewhat surprising stress-free transition from summer to school!

Saturday, June 15, 2013

Family Vacation

I knew this would happen. Ever since Rob's parents told us about their plans to fly from Toronto to Winnipeg, we looked so forward to driving there to meet them. And now, after spending five days in Canada, the fun is over much too soon.
Faith gets ready for our drive to Canada
Rob, Faith and I made the 420-mile drive on Monday and Jean and David arrived by plane on Tuesday morning. When we told people we were driving to Winnipeg, they said, "That's kind of a long drive." But after driving over 1,300 miles all the way to Toronto in October 2011, this drive was going to be a breeze! And it was. Faith once again proved to be a great little traveler and was content to listen to her music CDs the whole way.

Of course we didn't make it in 6 hours and 20 minutes like Mapquest said we would. With stops to eat, gas up, get Faith changed and get her feedings started, it took us more like 8 1/2 hours. Practically the whole way there, Faith asked, "Are we in Winnipeg yet?" "Where's our hotel?" She was especially anxious to get to our hotel to go swimming.
We found out the wading pool was actually perfect for us!
It was so wonderful being reunited with David and Jean. It had been nearly two years since we last saw them. On Tuesday afternoon, we did what we promised Faith - we took her down to the pool to go swimming. She seemed to think that after seeing her grandparents and going swimming, our vacation was over and it was time to go home.

The next couple of days were a little rough for her and she ended up getting constipated. On Wednesday, she was not her normal cheery self and was really missing home. Thankfully though, after getting a lot of water and miralax in her system through her feeding tube, she was able to "get the lead out." She felt much better after that and was up for a trip to the zoo the next day. The highlight of the zoo was seeing the polar bear, Hudson who actually came to Winnipeg from Toronto.
All five of us at the Assiniboine Park Zoo
Hudson the polar bear
For the most part, we didn't do a lot of sight-seeing or going places - except for Rob who made three or four trips a day to Tim Hortons (every Canadian's favorite coffee shop). But we did have some quality visiting time. Rob had fun watching the first hockey game of the Stanley Cup Finals with his parents. Faith was not into the hockey game so I kept her entertained in our adjoining room. The game went into three overtimes and lasted until midnight - needless to say it was a late night for everyone.
The Bousfields enjoying the Stanley Cup Finals together
Me and Faith hanging out together in our room (ignore date stamp)
There were lots of tears when it was time to say goodbye. None of know for sure the next time we will see one another. Hopefully it won't be nearly two years again! It is hard that Rob's parents live so far away but they are grateful for all the services and quality of care their granddaughter gets here in Bismarck.
Faith gave her grandparents a lot of laughs!

Preparing to leave Winnipeg
Our drive back was pretty uneventful. We stopped in Fargo to eat and do a little bit of shopping. Faith's new favorite is Sid the Science Kid and we found a DVD at Toys R Us. Faith couldn't wait to get home. We finally arrived in Bismarck and when we turned onto Century, I looked back at her and she was just looking out the window with a big smile on her face.

Last night, as I went to sleep in my own bed, I couldn't help but thank the Lord for the good driving conditions, the great weather, our van running without any problems, our safety and for everything working out so well. It was a wonderful family vacation and as my husband keeps saying, "it was the perfect tip."
No place like home!