Showing posts with label respite care. Show all posts
Showing posts with label respite care. Show all posts

Tuesday, October 29, 2019

A Cold But Fun Filled October

As I'm writing this blog post, it is currently 25 degrees outside. With the windchill, it feels more like 12 degrees. That's cold for October. Even in North Dakota! Winter definitely seems like it's here. Earlier this month we had a historic blizzard that dumped 13 inches of snow on Bismarck and over 2 feet of the white stuff in other parts of the state. As a result, the public schools had their first official snow day. I was ready to give Faith the day off from her lessons at home, but she still wanted to do them!
First major snowfall of the year - in October! (Thanks mom for the pic!)
It could have been a snow day for Faith but she still wanted to do school!
It did warm up soon after and all the snow melted but the October blizzard created quite a mess for farmers and ranchers who still had crops in the field and cows in the pasture.

I was very grateful that we didn't have to go anywhere - for school or for work. I am still freelance writing from home. Recently, I began doing some freelance work for a local company called the National Day Calendar. I currently write their articles for the International days that get observed around the world. It's been a fun change of pace and much more exciting than writing about septic systems and other mundane subjects!

Besides homeschooling and freelance writing, Faith finally started Inspire Collective again. It's her most favorite activity in the world. She has made some of her best friends through this faith-based homeschooling group.

Faith's class learning about plant cell walls in science.
Faith's class checking the speed of their LEGO cars

Faith's LEGO car ended up being the 5th fastest out of 12 cars! I was really thinking her dad should have been there for this event, but Faith and I actually did pretty good!

Along with enjoying science and STEM, Faith also likes her history class. They are learning about one of my favorite time periods, which is the mid to late 1800's. I am thankful that she watches Little House on the Prairie, which helps with her comprehension of the subject matter.



This past weekend, we had a momentous occasion in our household as Faith turned 16! We ended up having a party in the lobby of our building with some of her friends and neighbors. Because we had to limit the number of people, my mom came up with the idea of having a 2nd party for just the family, which will be next month.

Despite the fact we already had plenty of people on our guest list, Faith continued to invite people in our building. One day we were sitting in the lobby and a lady who had recently moved in went to check her mail. Faith said hello to her so she came over to where we were sitting. She told us she is a nursing student. (Faith always makes connections with the care-giver types!). 

Faith ended up inviting her to her party. Not only did Faith's new friend show up, she gave Faith a very nice card with money inside. It was so incredibly sweet. Everyone who came to celebrate with Faith was so kind and generous. She received clothes, nail polish, art activity kits, gift cards, and even homemade cookies! We are truly blessed to have such wonderful friends and neighbors.

 A few of Faith's neighbors even brought their dogs!
One of Faith's favorite families!
Chris and Faith with her beautiful birthday bouquet.
Faith with her friends.  


Faith blowing out her birthday candles.
She did it!!! Happy Sweet 16 Faith!

Thursday, October 8, 2015

Times of Transition

To me, the cooler months of fall seem more like a season of newness than do the cold winter months of January. Maybe it's because that's when school, Bible studies, and small groups all start up again and we have to transition from our lax summer schedules to busier days that are filled with a flurry of activities. (I also realize that part of the busyness is that we have so much to get in before the snow flies).

Another reason fall is a great time to get a fresh start is because according to God's calendar, the New Year actually takes place in either September or October during the Jewish holiday of Rosh Hashanah. Whether it's on purpose or not, it seems as though our family always experiences major transitions in the fall with this year being no exception.

Spending a perfect fall day at the park
Burning documents - it's much faster than shredding plus this way we get S'mores!
Hanging out in our crowded apartment/office
We kicked off September by moving our office into our apartment. (And yes, it is a little crowded in here). We did this for a few different reasons all which seemed like a good idea at the time. Now, however, my husband is really missing having an office. He's discovered he is not a work-from-home kind of guy. While I can work from home, I have discovered that not having an office is a really good excuse to go to a coffee shop. The library works well too, which by the way, has a coffee shop inside so it is a win-win.

Another transition we have made is that my husband has decided to join my brother's tree crew. This means when my husband is out all day doing tree work, I am the sole caretaker for Faith, not to mention her homeschooling teacher. Thankfully, we get respite care three or four afternoons a week which is when I try to get my work done and run errands. (Or get some rest if we've had a particularly rough night).

Faith's first day of school at home (she seems happy about it!)
Last week, Faith and I began a new adventure called Inspired Collective where we meet with other homeschooling families once a week at a local church. Together, we learn Spanish, science, history, and practice for an upcoming Christmas program.

This group is a huge blessing as homeschooling an only child can get a little lonely for both of us. While she gets to interact with other kids, I get to socialize with other moms. One of the best parts is that all the parents are there with their kids and I get to wheel Faith from room to room and help her with writing, eating, etc. As Rob says, "Faith has the best aide ever this year!"

Our impromptu field trip to Papa's Pumpkin Patch
She certainly is getting taller!
Fall fun with Grandma and Grandpa
Just being silly!
I am still doing some freelance writing but I have also become a published author! My book, Having Faith is finally available for purchase. So far, most of the feedback has been very positive. This is definitely a new season for me and I hope and pray that my book can be a source of encouragement to others.

Because of so much going on, I made the tough decision to step down from serving as JOY International's Java JOY coordinator. I still enjoy getting together every month with my fellow JOY bloggers all of whom have been such a blessing to me. These ladies are true prayer warriors and are always ready to offer advice, friendship, and the love of Christ. 

As you can tell from the pictures, Faith is blossoming into a beautiful young lady. She is definitely a preteen and has the emotions to prove it! We've certainly had some challenges with some of these changes but God gives us the grace and the strength to get through them.

Through it all, I am thankful to God for new opportunities and family and friends who have encouraged me along the way. I look forward to all that He has in store during this New Season!

Thursday, August 1, 2013

A Plethora of Appointments

Upon reflecting about the month of July, I have come to the conclusion that Faith has never had more appointments in one month than she did last month. She had over a dozen chiropractic appointments, eight ABM lessons, two visits from the Easter Seals coordinator, one occupational therapy consult, one optometrist appointment (and a partridge in a pear tree!).

The Easter Seals visits were merely a formality as Faith has a new case worker and we needed to update some paperwork. Her disability case manager came along on one of the visits. Her optometrist appointment was her annual routine eye exam and we are glad to report that Faith's eyes continue to remain the same and she still isn't needing glasses. We are thrilled about this as Faith had glasses at one time and we also had to do patching on her eyes but her vision and her eye muscles continue to function normally! (Praise the Lord!)
Faith getting a chance to relax!
In June, Rob took Faith to see a chiropractor for a consult to see how chiropractic care might be able to help her - especially with her sensory processing. He was confident he could help her and at the end of that month, Rob and I attended an informational seminar given by the chiropractor, Dr. Steve Nagel. Needless to say, we learned A LOT about how chiropractic care could help Faith and about nutrition in general.

Faith had her first chiropractic appointment in July and he did a thorough exam, including a scan called an EMG (electromyography) Amplitude. Technically, an electromyograph detects the electrical potential generated by muscle cells when the cells are electrically or neurologically activated. It gives a total output of energy going through the nervous system. A normal energy rate is 100%. Faith's numbers, at 235%, proved to be much higher. No wonder she is so sensitive to loud, sudden noises and she continues to battle her startle reflex!

Dr. Nagel felt that adjustments to her upper spine, what he calls neural integration, would help decrease the high rate of energy. We are happy to say that the adjustments to her spine are making a difference - her re-evaluation showed her energy rate had gone down to 195%!

In the midst of her chiropractic appointments, Pati was here from Wisconsin for Faith's ABM lessons. With Faith being out of school, we wanted to try to get in as many lessons as possible so we scheduled for eight. It was a lot for Faith and there were times we were wondering if it was too much. At one lesson in particular, Faith seemed to come completely unglued.
Pati working very gently and slowly with Faith
The problem she was having was that at the session prior, before strapping Faith into her chair, Pati allowed Faith to fall to the side without catching her. In doing this, Pati was trying to get Faith to learn what she needed to do in order to get herself back into an upright position in her chair. Faith did not like this because she felt like she was falling. She ended up being mad at Pati and was sure to tell her!

It occurred to me and Rob that Faith has never had the experience most babies have when learning to walk and that it's okay to fall because they quickly learn to get right back up again, completely unscathed. In Faith's case, she has never had this experience and when she falls to the side in her chair, someone is always there to catch her. She has never learned or never had the experience of learning to get back up on her own.

ABM is truly a whole new world for all three of us and we are all learning together. Pati knows this and she didn't mind that Faith was mad at her. She said, "Faith is in the 'Making the Impossible - Possible' phase right now, and this brings up a lot of emotion." We are thankfulf or Pati's patience and her dedication to both the children she works with and with their parents!

Faith also had a visit with the occupational therapist she has been seeing and had a consult for some testing and re-evaluations. Faith really loves her OT, Geri who works at Hope Therapy Center. She graciously allows Pati access to her office to do the ABM lessons. Geri is familiar with ABM and tries to incorporate some of it into her OT sessions with Faith. 
Faith gives Geri her best effort
With all of Faith's latest treatments and lessons, Rob and I are noticing that Faith seems to be understanding and comprehending things better and that she is asking appropriate questions when trying to find the answer to something. It's like her brain is a puzzle and all of the pieces are very slowly coming together.

Her respite care provider is noticing things as well like how Faith is more easily able to pick up food with her hands and bring it to her mouth. Even my dad noticed that her hands seem more relaxed and opened up instead of being in a clenched position. We are truly excited about the progress Faith is making and thank God for bringing some more amazing people into our lives for the next stages of Faith's development. Although she has had a lot of appointments lately, it has definitely been worth it!

Saturday, January 5, 2013

2012 Year in Review

This year in review is a little belated - I had wanted to do it before the New Year actually began but both Faith and I fell ill with the flu and I had zero energy. It's hard to be creative with no energy! While I became sick shortly after Christmas, Faith got sick on New Year's Eve. On Friday, she finally felt well enough to go to school.

Thank goodness for the miracle drug, tamiflu, which helped decrease our symptoms and the flu did not last as long as it might have without it. I am also thankful that although Rob had mild symptoms for a few days, he is already back to being well. So while we did not end 2012 very well, the New Year started off great as on January 5th the NDSU Bison won their 2nd straight football championship!
Here is how 2012 went for us:

JANUARY - Although last winter was pretty mild for us here in North Dakota, January still got pretty cold which kept us indoors a lot. One of Faith's favorite things to do is SKYPE with our friend Kimberly in Kansas. Kimberly used to be one of our respite care providers. In 2012 we said goodbye to another favorite respite care provider with whom we also keep in touch and see every now and then when she is in Bismarck.
Faith on SKYPE
FEBRUARY - Faith got to take her wheels out onto the ice for the first time ever, thanks to a new organization in Bismarck called Dreams in Motion. In February she went curling and in March she played wheelchair soccer. Also in February, we celebrated mine and Rob's birthdays and Faith baked a lot of cookies with Michelle. She also took part in her 2nd grade school program in which she got to say a few lines and play some little bells for the music portion.
Faith has fun trying curling for the first time
MARCH - Faith had fun playing wheelchair soccer right next door in her school gymnasium. There were volunteers from the University of Mary soccer team that pushed the kids around and the faster they pushed Faith the more fun she had! Mommy had some fun of her own going to Dickinson with a friend to take in a Christian concert.We also had a visit from Grandma and Grandpa who are going to be moving to Bismarck!
At the gym at Centennial Elementary for wheelchair soccer
APRIL - This month always proves to be very busy as it is the annual fundraiser, The Great American Bike Race. Once again Faith's Fantastic 12 participated in the event and as a team raised over $4,000! Faith and her dad went to their very first Butterfly Ball - a daddy-daughter dance. We also celebrated Easter with some friends but unfortunately it was too windy to fly kites. At the end of April, we had fun throwing a surprise birthday party for Faith's uncle Todd.
Rob and Faith at the Butterfly Ball
MAY - Rob and Faith always manage to make me feel extra special on Mother's Day and this year was no different as I received flowers, cards and food so I didn't have to cook! Faith also bonded with her dad as they went fishing together for the first time as part of a school field trip. This spring we started going to New Life Church's redefinition service. We are very happy to finally find a church home - and such a wonderful one at that!
One of my favorite things to do with Faith is read books
JUNE - The big event finally arrived as we celebrated my parents 40th wedding anniversary here in Bismarck. We had a great time picnicking at Sertoma, the renewal of wedding vows on the Lewis and Clark Riverboat and dinner at the Bistro.
The whole family gets together to celebrate mom and dad's 40th anniversary
JULY - For the first time ever we tried to go to the Fourth of July event at the capitol building but Faith was not too thrilled since we had to listen to the orchestra first. It seemed like forever until it got dark enough to shoot off fireworks and by that time she was ready to go home. We got to see lots of photos taken by my brother Todd and his wife, Barbara who went on a missions trip to Kenya. Also in July we had a visit from our friend Brittnee and new license plates for our van - HEB11 1 (Hebrews 11:1).

Faith spend time with her auntie and uncle
 AUGUST - We did a lot of visiting in August! Our friends Kimberly and Matt came up from Kansas and we got to celebrate the news with them about their baby due in February! Also, I had a reunion with the two roomies I lived with in college while a sophomore at NDSU. It was great to be together with Keri and Mary again! We traveled to Washburn to visit friends as well. Faith started 3rd grade at the end of the month.
Faith always likes having girl time! Here she is with Kimberly and her sister Melanie
SEPTEMBER - Rob and I celebrated our 10-year anniversary at our favorite place to eat - the East 40. We went all out and had filet mignon! Faith went on her first hayride out at some friends house from church.
Faith at her first hayride event
OCTOBER- Faith celebrated her 9th birthday. She discovered playing Wheel of Fortune on the PS3 which Rob and I both have fun doing with her. Faith seemed to be having trouble with fatigue and not gaining weight so we took steps to change her diet and began half days of school on Tuesdays and Thursdays which seemed to help. I celebrated my one anniversary at work by making pumpkin muffins for those who were in my training class and who also made it one year!
Princess Faith celebrates her 9th birthday!
NOVEMBER - We celebrated Thanksgiving with some friends of ours who as you can tell in the picture are huge Dallas Cowboys fans. We have much to be thankful for as we have all been healthy and God has continued to provide for all of our needs.
Happy Thanksgiving!
DECEMBER - Faith had fun during her school program at school and also looked forward to her Christmas vacation from school. I had fun going to another Christian concert with a friend which was held at Evangel Assembly. We had a nice Christmas and saw some family and SKYPED with our family in Canada. Alas, another year has ended and it will be exciting to see what God has in store for 2013!
Faith showing her holiday hat to Grandma and Grandpa





Saturday, November 17, 2012

A Rough End to a Challenging Week

We made it to Saturday. It has been quite the challenging week.. While it started out great, it just seemed to downhill as the days went by. After having four days off from school, Faith got her haircut on Monday evening followed by a trip to the Healing Rooms where they were celebrating their 10 year anniversary.

Me, Rob and Faith all went in for prayer together and Faith received the scripture, "Then shall your light break forth as the morning, and your health shall spring forth speedily: and your righteousness shall go before you; the glory of the LORD shall be your rear guard." Isaiah 58:8.

They always write down the scripture verse for us on a piece of paper so we can take it with is. Faith was so excited, she grabbed the piece of paper and yelled, "I can't wait to show Lola my scripture!" Lola is one of the directors of the Healing Rooms and was sitting at the front desk that day.
Faith with Bob and Lola - directors of the Healing Rooms of the Northern Plains
Tuesday, however was a different story. Last weekend we had a snow storm during which we received freezing rain first then 10 inches of snow. The plow had come through our parking lot but didn't do a very good job and needless to say, our van couldn't get out of its spot.

Rob and I had to walk Faith down to school on the very icy, snowy sidewalk. When we made it back from our trek to school, Rob and I tried to get the van unstuck. He rocked and I drove but to no avail. I went upstairs and called my supervisor because I was running late for work. Our neighbor kindly helped us push the van out and Rob spent the rest of the day shoveling.

The next morning, while Rob went to get the van ready, I wheeled Faith to the elevator only to find out it wasn't working. A handicapped-accessible building with no working elevator is not a good thing! I ran Faith back to our apartment, locked her inside then found Rob. He had to take her downstairs first then he went back up for her chair. Needless to say, she was late for school and I was almost late for work again!

That afternoon, Rob and I had our yearly appointment with the Social Security people here in Bismarck to get her re-qualified for her SSI. Thankfully, the appointment went well and the day improved from there. Since I took that afternoon off form work, Rob and I got a chance to go out and eat before our Bible Study that evening in which we had an awesome session on Relentless Prayer.

Along with all of this going on, the week was another very stressful one at work. We had a recent conversion with another health insurance company which is always a little challenging but even more so when we barely receive any training for it. Finally Friday came only to have Faith come down with a cold. Of course when she is not feeling well, she wants her mommy so I took care of her last night and neither of us slept very well.

Thankfully, we had respite care this morning so I did get a chance to sleep. I felt bad because I missed the JOY event, Continuing Prayer, Care and Share. And I also missed watching the Bison's last home football game, which they won. Faith seems to be feeling better as the day goes on so hopefully tonight we'll all sleep well and make it to church tomorrow morning.
Spectacular sunsets like this always remind me of God's awesomeness
Through all the good and bad this week, one thing is certain - God is with us through it all and he cares about our challenges and every detail of our lives. I'm so thankful we can look to Him for strength in our times of weakness and for joy in the midst of our struggles.

Monday, January 2, 2012

Saying Goodbye...Again

Last month, we had a sad surprise - that Brittnee, a respite care worker who has been with us for a year and a half, was leaving. Once again, it was time to say goodbye to someone who had become like a part of the family. It's hard when these respite care girls leave, although it is completely understandable. More often than not, they are college-aged and in serious relationships which lead to engagement then marriage.

There have been three wonderful girls we have gotten the privilege of knowing through respite care services. And I am continually impressed with their maturity, professionalism and most of all, their great care-taking skills with Faith.

While it is hard for us to see them go, it is great that there is e-mail, Facebook and even Skype so we can keep in touch. With all of today's technology it makes the goodbye seem not so final. So to Kimberly, Lindsey and Brittnee - three amazing young ladies who we are blessed to know through respite care - we wish you the best in all you do, wherever your journeys take you.

Faith and Brittnee

Friday, August 12, 2011

A Very Special Visit

Just the other day we had a very special visit from our friends Kimberly and Matt. Kimberly used to do respite care for us and worked with Faith for about 3 1/2 years. They developed a very special relationship. Kimberly is the one who helped Faith make a very special gift for us - our "I love you stinky face" ceramic mug. It was also Kimberly who made Faith think her last name was spelled R-O-C-K-S because they would practice spelling Faith Rocks!

While we were happy for Kimberly's fiance finding a job in her home state of Kansas last summer, we were very sad to see her go. After moving back to Kansas, Kimberly found her dream job in early childhood education and she and Matt got married.

Throughout the year we have kept in contact with them through SKYPE. Sometimes our SKYPE sessions are over an hour long and Faith and Kimberly found a way to play hide and seek over the computer. And then when its time to say goodbye, Faith cries and tells me how much she misses Kimberly. I tell her I understand how she feels.

Matt and Kimberly, along with the newest addition to their family - an 11-week old Cavalier King Charles Spaniel puppy named Lanie, recently traveled up here to North Dakota. While they were here visiting, Faith kept a close eye on the puppy who was busy sniffing around our whole apartment. After they left, Faith said, "oh I just love that puppy." And of course now she asks, when is Kimberly coming back over?

Matt, Kimberly and Lanie with Faith

Tuesday, June 21, 2011

Tuesday Tidbits - Rummage, Respite and Reorganizing

For the past month or so, Rob and I have been trying to go through every closet, every drawer, every box, basically every thing in our apartment. This Friday all of our un-needed treasure will be up for grabs at a rummage sale we're going in on with a friend of ours. This morning, Rob realized he had forgotten to go through his clothes so he hurried into the closet and grabbed all of the hangers with dust on them. A lot of his clothes he has shrunk out of since losing weight. Wish I had that same problem!

Another reason for our reorganizing frenzy is because we had to make room for Faith's new bed. While shopping for a better mattress for her, we were at TW Warehouse when we discovered the Dr. Breus Bed. Dr. Breus developed six different mattresses for different kinds of sleepers. The mattress we found for Faith is made especially for people with fibromyalgia or arthritis.

Though she doesn't have either of these conditions, we figured it was worth a shot to see if it would help her sleep when her muscles were feeling tight. We've had the bed for a couple of weeks now and she still wakes up at least a couple of times a night but we noticed she doesn't seem so grumpy in the morning. We think this might mean that she feels less achy and less stiff in the mornings. We think she is also getting more sound sleep when she is sleeping and feels more relaxed as well.

The other night I had put some of Faith's stuffed animals on her bed. When she noticed they were there, she said, "What's this mess on my bed!" Apparently she doesn't want stuffed animals on her new bed.

Today we met with Easter Seals because we had to do a new personal care plan for Faith, which means we have been with them for one year now. We really like Easter Seals and appreciate the community activities that they hold for their families. We have some great respite care workers or direct support personnel (dsp) through them. Recently, one of Faith's aides at school began doing respite care for us. It works out great because she already knows how to take care of Faith! Faith's favorite thing to do with her is baking - last night they made some very yummy chocolate chip muffins!

Faith enjoying some time with her respite care provider

We also had Michelle over the weekend (who has been with us since Faith was a baby and who made the transition from our former support service to Easter Seals so she could continue to care for Faith.) Michelle took her for a walk down to Cold Stone Creamery and while there, Faith told Michelle, "Maybe if we're NOT polite, we'll get some free ice cream!" I really have no idea where she got that from!

Tomorrow I'm going to my friends where we hauled all of our rummage stuff to and am pricing everything. Then in the afternoon Faith has hydrotherapy and physical therapy. I'll try to remember my camera AND my SD card to get some pictures!

Thursday, July 29, 2010

The Little Baker

Faith loves to bake. And as she informed her respite care provider the other day, "I'm really good at mixing!"

She likes to watch all of the ingredients go into the bowl, and then I help her stir it all together. She watches intently as I put the baked goods - usually muffins or cookies - into the oven. I turn on the timer and she knows our creation is ready when the bell goes, "DING!"

I'm not sure if it's a good thing or not that I don't really bake all that much. Probably better for weight control but those baked goods sure are yummy with a cup of coffee. Faith still gets her baking time in though as all of her respite care providers have baked with her at one time or another. One of her providers even bought her the cutest little apron.

Yesterday, while Kimberly was watching Faith, she informed Kimberly that she wanted to make something in the kitchen. So she and Kimberly searched in the pantry for something they could make. Aha! A little box of Jiffy cookie mix was sitting on the shelf. I was in the back room working on my computer when I thought I heard drawers opening and closing, pans clanging together and lots of giggling. I just figured Kimberly was fixing her lunch and Faith thought it was funny.

Then I heard Faith and Kimberly coming down the hallway. Faith sounded very excited. She was making that sort of high-pitched squealing noise she does when she's up to something. I heard them get closer and closer then there was a knock at the door. When I opened it up, Faith could hardly contain herself. "I want to show you something we made for you, mommy!" She was smiling so big as she said the words that I barely understood her.

On a plate on her lap was a large sugar cookie. I told her, "Oh thank you Faith. It looks delicious!"

Even though she had lots of help, baking cookies was all her idea. She was so proud of herself and I was proud of her too. And the cookies really did taste good - daddy proved that when he came home for lunch and ate three of them!

I will never forget her giggling and squealing with excitement wanting to show me something she helped make. It really was one of those precious moments that a mom never forgets.


Faith having fun mixing when she was four years old.

Friday, June 18, 2010

What a Wonderful Week!

Every day this week been a great day. Each day has either brought new adventures, fun with friends, good news and even a little reunion of sorts. And on top of all that, Faith has been sleeping well, which is always a huge blessing to our family.

Since last Monday, Faith has been attending a summer school program called Camp Edventure at her school. She goes from 8 a.m. to noon, Monday through Friday. The program is six weeks long so she'll get a nice break in August before starting first grade. Her mornings have been busy and this week our afternoons have been busy yet fun-filled as well.

Monday - Faith and I took the long, scenic route, mostly uphill, walking to her friends' house for a playdate. We spent the whole afternoon at their house playing outside in a tub of water filled with toys and her friends showing her worms they had dug up. It was such a beautiful day to be outside and I was so thankful to our friends for sharing their backyard with us! After nearly four hours of playing, our friends walked with us back home which was a great time as well.

Tuesday - Faith had her annual eye exam. At last year's appointment, her optometrist told her she no longer needed glasses, which she had worn since she was two. He had also told us we didn't need to have her wear an eye patch for a half-hour each day because the muscles in her eyes were much improved. I really believed God had healed her vision. So this year I was hoping to hear the same news and we did! She still doesn't need glasses and still doesn't need to wear the eye patch. We are so thankful! We celebrated afterward with a Frosty at Wendy's.

Wednesday - Faith had speech therapy in the afternoon which is usually fun for her as she gets to read or make up stories and do some work on the computer. That evening, her respite care provider (and friend) Michelle, took her to the zoo where the library had a special reading program. There were puppets telling stories and singing songs. Faith really enjoyed it and of course she loves going to the zoo. As soon as they got out of the van, she was telling Michelle all of the animals she wanted to see and pet.

Thursday - Weatherwise it was not such a great day as a windstorm had blown through the night before taking down parts of trees. And in the afternoon there was actually a tornado watch. I had been planning on taking Faith back to the zoo for her friend's birthday party. Though it was windy and the skies were gray, we decided to go for it. Thank goodness the first part of the birthday party was held indoors as we all listened to a torrential rainstorm pound down from inside the building. And when it was time to go outside and see the animals, it was as if God had parted the clouds and allowed the sun to shine just for us! It ended up being the perfect day to be at the zoo!

Friday - This morning while Faith is at school, I am looking forward to a friend and Moms In Touch prayer partner coming over and praying for the kids at Centennial while they are in school for the summer.

This evening Faith is going to be reunited with a former respite care provider, whom we have remained in contact with and have seen from time to time. Kimberly first started working with Faith when Faith was three years old. She has been in another town teaching but is back for the summer and we are all looking forward to Kimberly and Faith spending time together once again.

Thank you Lord, for this wonderful week that has been so full of blessings.

Friday, April 30, 2010

A Rough Week

I don't usually use the old cliche, Thank God Its Friday or TGIF but today I really am thanking the Lord it is Friday. This week has been a bit of a rough one for the whole Bousfield family.

Monday - Faith had the day off from school for an unused snow day or something and thank goodness she did because she woke up at 6:30 a.m. throwing up. After getting her changed, me changed and her bed cleaned up, she did a repeat about 30 minutes later. She continued to do so until mid-afternoon until there was absolutely nothing left in her poor little tummy. Later that afternoon, she seemed to be feeling better so a gave her a mixture of pediasure/water and she kept it down.

Tuesday
- Faith and I woke up to find Rob at home on the couch. Now he was throwing up and had called in sick. I kept Faith home from school to make sure her feedings were going to continue going okay. Although tired, she did make it to occupational and speech therapy in the afternoon but ended up having a diarrhea-like diaper that her poor OT had to change because I stepped out to run an errand. (Thanks, Nicole!)

Wednesday - I had to wake a sound-sleeping girl to go to school. She was not a happy camper. I knew she was going to go into one of those crying fits that lasted all the way to school so I tried to ease her into getting dressed. I sat with her and gave her lots of kisses and hugs. But we were quickly running out of time and I had to get her dressed and ready. Sure enough, her crying fit started and lasted all the way through me combing her hair, brushing her teeth, putting her orthotics on and getting her feeding ready. It it had not been for a sweet little boy in the hallway, she would have continued crying. But her curiosity had been piqued by the little boy and his mom and baby sister so we made it down the elevator in peace.

Thursday - Faith decided it was time to get up at 4:30 a.m. and stayed wide awake until 7:00 a.m. at which time she finally went back to sleep. I decided to let her sleep and didn't send her to school. That afternoon, I felt a migraine trying to sneak its way inside my head. I popped two advil and drank some strong coffee. After my vision cleared, I was able to get Faith to therapy where she went swimming and had physical therapy. She had sort of a tough time in PT because she was tired and Jackie had her practicing going through doorways in her power chair, which is not her favorite PT activity. By some miracle, my migraine never came completely into fruition that afternoon.

That night, I arrived home from my small group Bible Study to find Faith and Michelle in the bathroom, where Faith had thrown up. This time though, I think it was due to the fact that she was trying to have a bowel movement during one of her feedings, which sometimes happens.

Friday - 2:00 a.m. Faith is awake. I am confident I can get her back to sleep but to no avail. I begin to feel sharp migraine-like pains in my head. To my dismay, Faith began talking and wanted to get up, which woke Rob up. While we struggled to get back to sleep, Rob stayed up to watch TV. Finally, at 5:00 a.m. Faith fell asleep and didn't wake up until 10:30 a.m. Another day of missed school.

There are many theories by me, my friends, Faith's therapists and her pediatrician as to why Faith isn't sleeping well. One of which is that the tightness in her muscles is making it uncomfortable for her, which means her botox is wearing off (she gets injections in her legs every six months to help those muscles to relax). More frequent botox may be the answer. She may also need another phenol block, which is a procedure done where they block off some nerves in her legs. The nerves will regenerate, which is why another procedure may be needed. Other suggestions offered have been massage therapy, a visit to the sauna, see a chiropractor and/or stretch her legs more than twice a day.

Another theory is that her sinuses are bothering her. Last week she went to get another x-ray of her face and it showed there was still some congestion on one side of her nose. We continue to give her allergy medicine.

At this point, I'm not sure what the answer may be. What I do know is that this has been very challenging for our whole family and I continue to pray and seek God for his strength, grace and guidance on how to care for Faith and to help her sleep better.

Wednesday, April 21, 2010

Feeling Refreshed

My friend and I are currently taking part in a small group Bible study about the fruit of the Spirit. In this week's lesson it talks about being a friend who is refreshing. Yesterday, I was blessed to have a friend who gave me a chance to be refreshed.

Once again, Faith has gotten into a cycle of not sleeping well and is up several times throughout the night. Yesterday morning it had just gotten to be too many nights in a row of poor sleep and we were both exhausted. I allowed her to stay home from school to get some rest which meant I couldn't take the nap I was hoping to have when she was at school. I prayed that God would give me the energy to make it through the day. But He gave me something better - a chance to have a three-hour nap!

Around mid-afternoon, I called our respite care provider/friend, Michelle to see if she was available in the evening. Instead, she asked if I would rather have her take Faith in the afternoon. (It happened to work out with her job that she was free late in the afternoon). I told her that would be great! I managed to get Faith to her therapy appointment and Michelle was going to pick her up when she was done and take her to the library.

After dropping Faith off at MedCenter, I came home and promptly went to bed. That was at three in the afternoon. When I woke up, it was 6:00! The strange thing was, the apartment was completely quiet. My husband, knowing I needed sleep had found things to do after work so he wouldn't come home and accidentally wake me up. Neither him nor Faith came home until 7:30. So not only did I have a chance to sleep, but I watched Wheel of Fortune and ate my supper all in quiet bliss!

I am so thankful that Michelle not only looked after Faith at therapy but also took her to the library for two hours so I could get lots of rest. God is so good - when I really didn't think I could make it through the day feeling extremely tired, he truly provided for my needs. I am thankful to Him for that as well as thankful for a friend like Michelle!

Friday, February 5, 2010

Gut Feelings

Have you ever had a gut feeling? Sometimes I think that gut feeling is really the Holy Spirit. This has happened to me a few times recently. Once I was getting ready to go to a meeting to learn how I could get more involved in a particular group. But at the last minute before walking out the door, something compelled me not to go to the meeting. I heard a voice inside my head ask, "do you really want to do this?" No, I didn't want to, I just thought I should. I really do believe God knows what is best for us and for whatever reason maybe He didn't think my decision was the wisest one to make.

More recently, I had another one of these gut feelings but I didn't listen to it right away. It involved our respite care for Faith. We were trying to get a third provider to help fill in some of our allotted hours. On the first day we were introduced to her I just had this feeling. My husband happened to come home for lunch and he said he felt the same way. I decided though that we needed to at least give her a chance.

Two weeks later, I finally decided to listen to my gut or my heart or the Holy Spirit or whatever and ended our respite care time with her. I felt horrible because it's not that there was anything wrong with her and she was a very quick learner but there was just this, this, you know, this feeling. Faith didn't seem to make a complete connection with her and I just didn't feel 100% comfortable. I really didn't want this respite care provider to feel rejected but I also knew the importance of having a respite care provider whom you can completely feel 100% comfortable with, especially when you leave your child in their care.

They say that we women have women's intuition. I guess this is another way to explain that gut feeling. Sometimes we may not understand why we are having these feelings but I think we need to listen or pay attention to them. Sometimes maybe God is just giving us a nudge reminding us that we need to pray about certain decisions. I really don't understand why I'm having these feelings with this respite care provider but I know that I serve an all-knowing God. And when I get these gut feelings I need to stop, pray and listen for the Holy Spirit's guidance.

Thursday, September 24, 2009

The Rewards of Respite Care


Faith and Kimberly at Kimberly's college graduation reception

Last night when I came home Faith was so excited to show me the Mr. Pumpkin Head she and Michelle had made. There it was on our bookshelf, right next to two Mr. Potato Heads. By the looks of it, Michelle and Faith had a blast. Once again, I found myself being very thankful for such wonderful respite care providers.

I think Respite care providers are a must for anyone with special needs children. I have to admit, I felt a little guilty handing off my daughter to someone else while I went and did, well, nothing. But that was the point. When Rob and I found Michelle, we were at the top of our stress level. We both needed a break.

The difference between us and couples with non-special needs kids is they could just hire a babysitter or have friends and family look after their children. We on the other hand, need someone who has had special training to look after our special needs daughter.

Rob and I applied to have a certain number of hours a month that we would have respite care available to us. We did this through our disability case manager. When we first began, we had one respite care provider with just 20 hours a month. Now, we are up to two respite care providers for 45 hours a month. The increase in hours allows for Rob and I to spend more time together as a couple as well as have some precious alone time.

A couple of years ago after having just Michelle, we also found Kimberly, a college student majoring in early childhood development/special education. Since Kimberly knew she was going to be moving, she introduced us to Lindsey. I know of families who have a hard time finding the right respite care person for their child. Also there is often a high turnover rate with respite care providers. These are other reasons I am so thankful. It seems as though the Lord has found us the perfect respite care providers who have come to love Faith just as she loves them. And what a huge blessing that is!