Faith's Mom's Blog

Great News About Faith's Hips

2012-02-25T11:36:00.000-06:00

It's Saturday morning and after a busy, somewhat stressful work week, I can finally take a moment to enjoy a nice cup of coffee while doing some writing. Sitting here, I am reflecting on the wonderful news we received on Wednesday. Faith's left hip has not pulled out any further from its socket!

On Tuesday, Rob took Faith to get her x-rays and then on Wednesday he took her to see the physiotherapist. Upon reviewing Faith's x-rays of her hips, the doctor could not quite believe what he was seeing. The hip looked like it was in the same position as it was five months ago. He was in such disbelief that he sent Rob and Faith back downstairs for another round of x-rays. Faith had to stay on the table in case the doctor wanted more shots taken. She laid there as patiently as she could for about 30 minutes before the doctor finally called them back upstairs.

The doctor may have been befuddled but we know that God is working in Faith's body and we give Him all the praise!

Even though her hips have remained stable, the doctor pointed out that getting the baclofen pump could still help Faith. Now that she is eating more and gaining weight, we feel better about going ahead with the decision. We will keep you posted!

Time Flies in February

2012-02-18T11:06:00.001-06:00

It seems that the month of February always goes by so quickly. Maybe it is because January is usually the coldest month of the year and the month just crawls; then when February finally comes, spring doesn't seem so far away. This year, with the milder weather, January wasn't so bad and February is going by even faster than usual. Another factor to a fast-flying February, at least for our family, is that both mine and Rob's birthdays are in February and it is also the month Faith gets to celebrate one of her favorite holidays - Valentines Day.

Another fun time for Faith this month was having her 2nd grade program at school. She had so much fun singing along to all the songs and jingling her bell (all the kids got to take turns playing an instrument and hers was the bell) that she wanted to have another program! It was so good to see her truly relaxed and not even having a tough time with startling when people clapped. And although she herself didn't have any lines, she was saying the lines along with the other kids when it was their turn to say their lines.

Faith jingling her bell

Faith joins in the singing with some of the other 2nd graders

This month we also had a parent-teacher conference which was turned into a mini-IEP meeting with Faith's teacher, her special education teacher, her therapists and the school principal. There are still some concerns with her having the ability to read from left to right but there are more ideas to try. Some really good news we got was that before Christmas, Faith was only getting between 40 and 60 percent on her trials with sight words and numbers 1-20. During the first three weeks of January though, she was getting between 80-100 percent on the same words and numbers. She continues to do well driving her power chair and is also getting good at using her buttons for her laptop at school.

Another area she is making progress is physical therapy. In January she received botox and that, along with much prayer, has enabled Faith to take 130 steps in her gait trainer. At home, she is asking me and Rob to help her take steps. We hold her up and support her while she "walks" from the living room into the bathroom or the living room to the kitchen. She is very good at using her right leg then her left and repeating the process until she gets to where she wants to go. Although it's tough on mommy's back, it's great for Faith!

This afternoon we will be meeting two students from the University of Mary who are studying nursing/physical therapy. Faith seems excited to meet them and if she's up to it, we are going to take her curling. She was up at 6:30 this morning so we'll see what her energy level is like.

Next week, she has hip x-rays and an appointment with her physiotherapist. I'm sure the words baclofen pump will come up again but hopefully (we are praying very hard) her x-rays show her hips are stable. We will also be celebrating Daddy's birthday next week and before we know it, February will be over and a very busy Spring will be upon us!

Another one of Faith's favorite activities is doing SKYPE with our friend, Kimberly

Faith On Ice - Our Curling Adventure

2012-02-05T19:19:00.000-06:00

What is curling you might ask? The only thing I really knew about curling was that in the Olympics, it was the sport where they use a broom to furiously brush the ice in order to make that round thing go in a certain direction. Then one day Faith brought a flier home from school that her physical therapist sent along announcing wheelchair curling at the Capital Curling Club (I had no idea Bismarck had their own curling club).

Faith on Ice!

Honestly, I wasn't too sure about it but Faith seemed like she really wanted to try it. She was mostly excited that she would get to go on the ice (must be the Canadian in her!) I, however, was not excited to get on the ice and was glad there were going to be volunteers to help Faith.

I'm not sure of all the terms (although my sister-in-law tried to explain it to me the night before we went) but basically one volunteer helped Faith hold a stick thing which they clamped on to a "rock" and then pushed her chair to help her move her rock. There was also something about a hogline but I can't quite remember.And by the way, they don't really use that broom thing in wheelchair curling.

Those rocks weigh 45 pounds each!

They practiced for a while then eventually formed three groups with two teams of two players for each team. Faith was the only little girl there but she certainly didn't care. She had a blast and quite often asked the volunteers, "Is it my turn yet?"

The event was put on a by a nonprofit organization called "Dreams in Motion" who try to get people with mobility challenges together here in Bismarck to engage in various sporting events. Faith is definitely looking forward to going curling again next week!

Faith tries to perfect her technique!

What About the Boy - A Father's Pledge to His Disabled Son

2012-01-21T12:31:00.001-06:00

What About the Boy? is written by Stephen Gallup, the father who made a pledge to his disabled son to help him find wellness no matter what it took.

Joseph's parents were convinced that something was wrong him. He spent much of his time crying and while lying on the floor he would shake his head from side to side. Doctors and specialists told them that Joseph had a brain injury but that nothing could be done for him.

Believing that it was Joseph's birthright to be well, Joseph's parents took matters into their own hands, rising to the challenge of enabling Joseph to live a life of wholeness.

For my complete review of What About the Boy click here. Read Stephen Gallup's guest post on my blog, Who Needs Sympathy?

Conscious Sedation - A New Experience for Our Brave Girl

2012-01-06T20:23:00.002-06:00

I am so very proud of both Rob and Faith. I only wish I could have been there with them. Today was a new experience as Faith's medical providers used conscious sedation while administering her botox shots.

I was pretty bummed that I couldn't be there. January marks our busiest month at work so taking time off is limited. I already have to take time off on Monday for an appointment. So there I was this morning at work wanting to be with Faith and praying that all would go well.

Rob and Faith had to be at the hospital at 8:30. Faith's pediatrician was there, along with a few other of Faith's favorite medical providers. She was especially happy to see PBS playing on the television. Seeing something familiar helped to keep her calm.

Rob and I have struggled in the past wondering if conscious sedation was the right thing to do for Faith. It just didn't seem like giving her sedation drugs every time she got botox was very good for her. In the past during her botox injections, I would have to hold her down while they gave her the five shots in the back of her legs. It seemed to take forever and she screamed through the whole ordeal but when it was over she was fine.

For this round, Faith's doctors talked us into using conscious sedation. They said it was better for her, not just because it was painless but because Faith wouldn't have as vivid of a memory of the event.They also told us, she would not be completely put under like she had been with her feeding tube surgery and her phenol block.She had a really tough time after those procedures because the anesthetics really upset her tummy and we ended up having to stay at the hospital longer than anticipated.

Needless to say, today's event went much better than we could have possibly imagined. Faith didn't cry once - not even when they tried to put the iv in one hand then when that didn't work put it in the other. After giving her the sedation medication, Faith was very relaxed but not completely asleep. Rob was right there by her side praying for her the whole time. And before they knew it, they were back home.

I was a little stunned when I checked my e-mail on my lunch break and Rob said everything went really well and that Faith didn't even cry. I had to call on my 2:00 break just to make sure everything was still okay. Faith was happy and excited for me to come home so she could tell me about her adventure at the hospital. When I did get home, she said, "Mommy I was a really big girl at the hospital today." She has lots of stickers to prove it!

Here are some miscellaneous pics of our brave girl:

New jammies!

Look how tall she is!

Faith getting ready for bed

Saying Goodbye...Again

2012-01-02T21:25:00.003-06:00

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

2011 Christmas Moments

2011-12-27T17:51:00.003-06:00

Though it wasn't a white Christmas - not too many people minded considering the astronomical amounts of snow we have received the last three winters - it was definitely a Merry one! Following are some photos of some of our special moments this Christmas.


Our Happy Birthday Jesus cupcakes that Rob and Faith delivered to Faith's teachers and therapists at school.

Our little family

Our friend Joann delivers a wonderful Christmas present to Faith -
a porcelain tea set

Faith enjoying a special visit from Auntie Barbara and Uncle Todd

Faith's new hat!

Faith finally reaches December 24th on her
Lego Advent Calendar!

"Cookies for the Bousfield Family - Rob Cari Faith" cookie jar that my parents got us for
Christmas. It's perfect because Faith has been eating a lot of cookies lately!

Faith's personalized cupcake painting to match her cupcake room!

Riding along with Todd and Barbara on the way to Watford City

The Lawlar family on Christmas Day

Happy to have Barbara and Amber join us as sisters!

Funny boys - Donnie trying to take a picture of the inside of Preston's mouth!

Me and Dad - 2 NDSU Alumni who will cheering for the Bison
to win a national championship in January!

A beautiful Western North Dakota sunset -
the perfect ending to a wonderful Christmas Day!

We truly hope everyone had a safe, wonderful, joyous, peaceful Christmas this year and will have a very blessed New Year!

I Heart My Mayo Cardiologists

2011-12-12T21:17:00.001-06:00

Recently on Facebook, I saw that someone had written to one of her friends, "I heart you." I thought it was cute and quite appropriate to say to my Mayo doctors, especially since they are cardiologists!

The first time I ever met a doctor from the Mayo clinic was shortly after my cardiologist in Fargo told me I might need to start taking a blood thinner called coumadin because my right atrium was grossly enlarged and then neglected to call me back to let me know for sure. I ended up having to call them and he told me to just stick with an aspirin a day. Well, there is a big difference between using a baby aspirin a day and coumadin! Of all people, my cardiologist's nurse told me about the Mayo doctors who come to Bismarck, North Dakota.

After some pushing from my mom (who was really worried about me because I was not well at all but was still trying to work full time) I finally called and set up an appointment. I met Dr. Hagler and Dr. Ackerman in April of 1999 and they gave me the shocking news that it would be in my best interest to undergo another open surgery. (My first three surgeries were all done at the University of Minnesota).

My first trip to the Mayo Clinic was in May of 1999 when I had my fourth open heart surgery at St. Mary's Hospital. Four years later, Faith stayed at St. Mary's while in the NICU for two weeks.

Fast forward to 2003 when I ended up having Faith at the Mayo Clinic. There was a whole team of cardiac specialists on hand to make sure my heart remained stable during my emergency c-section. Although my cardiologist gave me a little grief for making him come in on a Saturday, I was so thankful he was there!

My great experiences with my Mayo doctors are the main reason I have gone back to Rochester when my pacemaker needed a battery change. Just recently though, I decided to have it done here in Bismarck. Although everything went well with the procedure, a couple of days later I noticed some erratic palpitations and I was very tired. The surgeon who had done the procedure recommended a 48-hour holter monitor.

I took the holter monitor off on a Friday and the following Thursday I went in for a follow-up appointment and was dismayed to find that no one had even looked at the results. The physician's assistant I saw pulled up my report while I was in the office with her and said, "No wonder you've been feeling like crap, look at all these SVT's!"

She went on to say if I kept having supra ventricular tachycardia (SVT) I might have to go on a beta blocker to help control the arrhythmias. She said she would forward the results to my cardiologist at Mayo.

Two out of three of my battery changes were done at the Mayo Clinic.

On Friday I e-mailed Dr. Cetta and asked if he had seen the test results and on Saturday morning at 6:30 a.m, he e-mailed to let me know he had forwarded the results on to the pacemaker specialist at Mayo (Dr. Cannon). Dr. Cannon e-mailed me as soon as he saw the results and assured me that I was not having SVT and that I would not have to go on a beta blocker. While this made me feel better about what was going on with my heart, it caused me to feel extreme frustration towards the cardiology department at Medcenter.

Today I e-mailed the pacemaker specialist one more time and he e-mailed me back telling me he could understand why I was still feeling the palpitations. He tried to explain that as my underlying heart rate gets faster, it's competing with my pacemaker which makes it look to the average cardiologist that I'm having SVT. He said if it continues to be a problem they can try to reset my pacemaker again.

Some of the palpitations are because when they changed my battery, it irritated some of my nerves which will resolve as the skin heals. It's possible that I'm having these reactions to this third battery because my lead is getting old. This battery is only supposed to last about three years and I'm guessing the next time I go through this, the leads will be changed along with the battery. It is a fact I will be going Rochester for that one!

I truly do heart my Mayo cardiologists and am so glad they are just an e-mail away!

Post Pacemaker Update

2011-12-03T22:05:00.001-06:00

Since my last post regarding my pacemaker battery change, I unfortunately have not been doing as well as I would have hoped. My hopes for higher energy levels have been dashed as I have been even more tired than usual.

On Monday night, I began feeling weird palpitations and sometimes my heart would beat so hard that I could see my chest pounding. I thought maybe my body just needed to adjust to the new battery.

The next day at work though, I noticed the same symptoms. On my afternoon break I tried to call the pacemaker clinic but of course I couldn't get through. When I got home in the evening, I tried to call again. This time, the surgeon who performed the battery change was on call so I was able to speak with him. At first he wanted me to come to the ER and get an electrocardiogram done but I told him it wasn't doing it all the time so then he told me to come in and get hooked up to a holter monitor.

On Wednesday during my lunch break I got hooked up. I had to wear it for 48-hours, which I thought was a long time until I realized there were actually times when people had to wear them for up to three weeks. On Friday during my lunch break I was able to take it off. Rob and Faith came to work to see me and to pick it up so they could take it to the clinic. It was fun having them there and my new co-workers really enjoyed meeting Faith since I talk about her so much.

Faith wasn't in school that day because we are going through a slight transition with her as well. She started taking a new medication to help decrease her drooling. It is very distracting at school when her aides are constantly having to wipe her face. We think it might be attributed to that last molar coming in but there are times she also forgets to swallow which is common with kids who have CP.

Anyway, one of the side effects of this medicine is constipation. She had been up a lot on Thursday evening with an upset tummy and trying to have a bm. Needless to say she overslept on Friday and was very tired, so Rob kept her home. We have increased her Miralax intake and so far this weekend that seems to be helping.

I still haven't heard anything about my monitor results. Hopefully on Monday I will know something. I am also scheduled to come in on the 8th to get my scar checked and make sure the pacemaker is working ok - hopefully they will just have to reset my pacemaker settings and that will fix it.

In the meantime, I have been receiving a lot of encouragement from family and friends and I know their prayers are making a difference. Our respite care ladies have been very helpful coming over to make sure Faith gets her bath and her hair washed and also that I can get some extra rest. Today while I took a long nap, Faith had fun with Michelle making a gingerbread house. We are truly blessed to have so many wonderful people in our lives.

No Black Friday Specials at Medcenter

2011-11-26T17:47:00.001-06:00

Though Medcenter wasn't having any Black Friday specials, Faith and I both found out that it was the best day to have an appointment. Everyone in Bismarck was either gone, shopping or sleeping, so we got into our appointments right away and were in and out very quickly.

For my appointment, I arrived at 9:30 to get my pacemaker battery replaced. A pacemaker check on November 11 via telephone showed that my battery was in ERI - the stage at which the battery begins to conserve energy because it's getting low. Apparently, it had been at that stage as of October 23rd - which is the day before I started my new job and also the day before I once again had health insurance. When a pacemaker is at ERI, it usually has about three months of battery life but because my heart sucks the juice out of my battery at a faster rate than normal, they advised me to get it changed as soon as I could. It worked out that I could get in the day after Thanksgiving - a holiday for us at work.

At first I was a little apprehensive about getting the procedure done in Bismarck as opposed to Mayo. In the end though, I am so glad I was able to do it here. The whole thing only took about 2 hours. The worst side effect I had afterwards was the shakiness that I felt. I was able to eat something though and since I was awake and alert, they let me go home. Of course I couldn't drive - Rob had been there the whole time so he took me home. I was pretty impressed with Rob - he stayed in the room while they were drawing blood and hooking up my iv. The only time he left was when I made a request for a caramel mocha while waiting to get discharged.

I am so thankful that I have the whole weekend to recover - I have been sleeping a lot. I am also a little sore and it's really black and blue. Faith constantly asks to see my owie. I was a little disappointed they didn't just go over my old scar - instead they created another one.

I really wanted to accompany Faith to her appointment later that afternoon with Dr. Ocejo. I had a lot of questions for him but due to my exhaustion I stayed home and slept while Rob took her instead. At 46 pounds, Dr. Ocejo is happy with her weight and we are to continue doing what we are doing with her diet. She has actually been asking to eat more solids so that has been a good thing.

As far as the baclofen pump is concerned, he is fine with our decision to wait until she gains a little more weight. In the meantime, we will be getting another round of botox to help relieve the high tone in her legs. This time though, we will be getting her partially sedated (like I was for my procedure) so it's not so traumatic for her.

After the appointment, Faith started to cry because she was having so much fun with Dr. Ocejo and was sad to see him go. She had been asking him all sorts of silly questions like "Does everyone on Sesame Street brush their teeth?" and "Do you know what a quest is?" They get quite a kick out of each other!

Over the Thanksgiving weekend, our appointments were both something to be thankful for and since we didn't get any Black Friday specials, it is good that we have great health insurance!

30 Days of Thankfulness

2011-11-23T19:10:00.002-06:00

Throughout the month of November, I have noticed many of my Facebook friends celebrating the month of Thanksgiving by updating their status each day saying what they are thankful for. I haven’t been doing this on Facebook, so here are my 30 days of thankfulness all in one day.

During the month of November these are the things I have been particularly thankful for:

1. JESUS

2. My wonderful husband and our amazing daughter

3. Our accessible van

4. Wi-fi

5. Finally being a two-car family

6. Living in Bismarck and in North Dakota

7. Praying friends and family

8. JOY International women’s ministry

9. Health insurance

10. Heaters that emit warmth

11. Wonderful Christian music

12. Our amazing respite care ladies who look after Faith

13. Having a good job

14. Warm coffee drinks w/ whip

15. Faith’s school and everyone who works with her there

16. Great haircuts from our stylist, Julie

17. Good books to read

18. Knowing a trustworthy mechanic who fixed the cracked boots on our Hyundai

19. New clothes for work

20. Date nights with my husband

21. Flannel pajamas

22. Yummy soup

23. HubPages.com - a great site for writers

24. Faith’s new stander

25. Rob’s willingness to clean and his attempts to make dinner

26. The volunteers and the ministry of the The Healing Rooms

27. Feeling peaceful during times of uncertainty

28. Getting good sleep

29. Connecting with other women who share a love for God

30. No sub-zero temperatures thus far and barely any snow

Transistions - From Stay at Home to Working Mom

2011-11-19T16:57:00.003-06:00

Rob and I have certainly had our share of transitions since getting married nine years ago. About seven months after having Faith, we closed our desk-top publishing business in Watford City and made the move to Bismarck. This was all totally unplanned but due to Faith's medical needs, we felt God was preparing the way for us to make such a huge transition.

Since coming to Bismarck, there have been more transitions including a few moves from apartment to apartment and having to get used to Faith's adaptive equipment, tube feedings, and the many therapy appointments that go along with having a child with special needs. It seems that just when we get into the groove of a new transition, another one comes our way. And more often than not, they are quite unexpected.

This latest transition involved me going back to work after being home with Faith for three years while Rob took his turn once again to be a stay-at-home dad. At first, Rob and I were a little stunned about our situation but the more we thought about it and the more we told God we trusted Him, the more we realized this transition would be a good thing for our family.

On my second day of work (October 25th) Faith turned 8 years old.

This past week marked one month since I've been working. There are many mornings I leave without even seeing Faith. She needs as much sleep as she can get so I don't ever want to wake her up to say goodbye. There was one morning though that I was all dressed for work and Faith got up and started crying when she saw me. She said, "Mommy, get back into your pajamas." It truly broke my heart to leave her that morning. Most evenings when I come home she says, "Mommy come over here so I can see what you're wearing." She's getting used to me wearing nice sweaters instead of old sweatpants!

All in all, Faith has been doing great with the transition. Although she misses her mom, she and her dad have truly been enjoying their time together. Rob has also been doing great getting her ready for school, taking her to get her hair cut and exchanging information with Faith's aides at school.

Rob and I decided long ago that one of us would always stay at home with Faith and for now, it's Rob's turn to be the stay-at-home parent. And while I have had to give up my Thursday morning Bible study and much of my writing time, I know that God will continue to guide us through this transition and any other ones that are sure to come.

No Decision Yet Regarding the Baclofen Pump

2011-11-05T17:38:00.002-05:00

Faith recently went to see a surgeon regarding the placement of a baclofen pump. At our last appointment with her specialist who oversees all of her therapy we were shown x-rays that proved her left hip was about 40% out of its socket. For this reason, we set up a consult with a surgeon and were looking at getting the baclofen pump sooner rather than later.

I was surprised to find out that the surgeon has some reservations about inserting the baclofen pump. The main reason for his reluctance is that Faith is still pretty small. They normally won't put the hockey-puck-sized pump in a child that is less than 45 pounds, which is pretty much what Faith weighs. There is extra concern with Faith because there is even less room in and around her abdomen due to her having a mic-key button. When Rob mentioned maybe waiting a year until Faith grew more, the surgeon said that was probably wise.

But still, there is her hip to think about. I really don't think her other doctor is going to be very happy that she's not getting a baclofen pump like right now. We could still go ahead with the surgery but it might cause complications because it would be sort of squished in there and too close to her pelvis bone and be very uncomfortable for her. The pump then might cause more harm then good.

I feel like we are stuck between two doctor's opinions. One is very concerned about her hip, the other more concerned about her size. We are going to have Faith see her pediatrician soon. I was a little surprised she only weighed 45 pounds because at one time she weighed closer to 50. Last year we had decreased her feedings because her pediatrician thought she was getting too much Pediasure which was causing some stomach problems. So now we want to make sure she is getting enough Pediasure during her feedings and want to know what her ideal weight should be. We will also ask him what his opinion is regarding getting the baclofen pump.

In the end, though, it is still our decision. We truly pray for God's wisdom and continue to also pray for supernatural healing for Faith's hip.

The Bousfields Big Trip

2011-10-27T21:54:00.002-05:00

First of all, I feel totally guilty for neglecting my blog and I cannot believe it has taken me so long to be able to play catch up. We recently drove our van all the way to Toronto and back home again - and logged 2,885 miles in doing so. When I told Faith's teacher that she would be missing school for eight days as a result of our vacation, she asked if we would do a travel journal so Faith could share it with her class. Here is that journal that she got to share with her class on her 8th birthday which was this past Tuesday.

On Saturday, October 8, 2011 me and my mom and dad left from Bismarck, North Dakota and drove in our van all the way to Toronto, Ontario Canada.

Faith is all settled in and ready to do some serious traveling!

Canada is another country and is often called “our neighbor to the north” but to get to Toronto we always kept driving east. This is where my dad is from so we went to see my grandparents who live there along with other friends and relatives. I had lots of fun but it seemed like we drove forever and ever.

On Saturday night we made it all the way to Duluth, Minnesota. This city is located right along Lake Superior. On our trip we got to see four of the five great lakes including: Lake Superior, Lake Michigan, Lake Huron and finally Lake Ontario. Next time we’ll also get to see Lake Erie. That’s all five of the Great Lakes.


Faith and daddy relax in Duluth, Minnesota in the only hotel room left in the city!

Passing through Duluth the next morning - they had some beautiful fall foliage

We drove all day Sunday and went through the state of Wisconsin which is known for making lots of dairy products like milk and cheese. For some reason my mom and dad were excited to find and A&W in Iron River, Wisconsin so they pulled over for a bite to eat. I had most of my feedings in the van while we were driving and in the hotels where we would stop for the night.

This A&W had a carhop who came out to our car to take our order!

I sure do miss the A&W in Bismarck!

Eventually on Sunday we made it to Michigan. We went across what is called the Upper Peninsula. Michigan is sort of divided by Lake Michigan. That night we stayed in a pretty little town called Manistique which is right along Lake Michigan.

Rest stop in Michigan. Faith loved the sound of all the crunchy leaves.

On Monday morning it was kind of exciting because we got to cross over the Mackinac Bridge. It’s huge! The bridge is four miles long and is very high. On one side I saw Lake Michigan and on the other Lake Huron went as far as I could see. After going over the bridge we stopped in Gaylord, Michigan because my dad had to stop at a coffee shop called Tim Horton’s that is well-known in Canada. They also have shops in Michigan, too.

Crossing over the Mackinac bridge

Monday, October 10^th was Columbus Day but also Thanksgiving Day in Canada so it was fun to cross over into Canada on this day. We sure had lots to be thankful for!

Oh Canada!

My dad got sort of lost so we ended up staying in a town called Ingersoll that night. My mom came down with a bad cold so she didn’t get much sleep because she was coughing so much. The next day my dad told us about the history of the town but I don’t really remember it.

Totally tuckered out after finally making it to Canada

We finally made it to the first destination of our trip – Waterloo which is where my dad’s cousin lives. I call him Uncle Brock. I was so excited to see him. He just put a swimming pool in his backyard for his three boys. I got to dip my feet in the water! I wish I could have gone swimming but it was a little cool outside.

Faith and Uncle Brock

We spent the whole day with Uncle Brock and his family. The next day I finally made it to Mississauga, which is right next to Toronto and I got to see my grandparents! Me, my mom and dad stayed with them and then my Aunty Joh came to stay with us for the weekend. We had so much fun shopping at the mall in Toronto. I got to pick out some early birthday and Christmas presents from the Lego store and my Grandmother bought me a pretty dress and a purple Smurf shirt.

Going shopping!

Taking a little break

While in Mississauga, we mostly did lots of family activities which was fine with me because I was kind of tired of being in the van all day long! My grandparents even had an early birthday party for me with a birthday cake and candles and presents. It was fun having a birthday in Canada!

A few early birthday gifts. The pink one is a cupcake purse!


Happy early Birthday Faith! Grandmother let her stay in her cupcake pajamas for the occasion!

The time went by way too fast and before we knew it, we had to pack up and leave. I loved seeing my family in Canada and hope we get to go back again.

Faith with Grandmother and Grandfather

Faith with her aunty Joh and one of two cats (Lucy) that was also there to visit for the weekend

Our last family event in Canada - dinner with Steve and Susie

We stayed in Cambridge, Ontario that evening to get a little head start for home. Then we stayed in Gaylord, Michigan. The next night we stayed in North Branch, Minnesota. We finally made it home around 5 o’clock on Friday, October 21^st.

We're not the only ones who want to go to the U.S.

Going back over the big bridge - this time in the wind and the rain

Rob did most of the driving the whole trip

A tired girl finally makes it back home.

It was sort of fun staying in all those motels but it is so wonderful to be home and sleep in my own bed!

The Appointment

2011-10-01T10:00:00.002-05:00

Faith did great yesterday getting her x-rays taken. She stayed nice and still so that the technicians could get three good pictures of her hips. Shortly afterwards we headed upstairs to talk to the doctor and to see the pictures we had just taken. When the doctor pulled them up on the computer, even I could tell it wasn't good news.

Faith's left hip has proceeded to come out of its socket. We had been hoping and praying for no changes, as the last two x-rays have shown. This time, though we could clearly see this was no longer the case. Her hip is about 40% out of its socket. At this point, we know we have to take action. If not, Faith's hip will, over time, become completely displaced.

We set up a consult with a surgeon for November 1. From there we will set up another date for Faith's surgery to get her baclofen pump. This will be the first procedure for Faith where she will have an extended hospital stay - most likely 3-5 days. Thankfully, this can all be done here in Bismarck. We are also thankful that we are not alone - we know we can turn to other parents of kids with baclofen pumps for questions and support.

Though we are facing the reality of Faith getting a baclofen pump, we continue to pray that God will heal her hip. We know we must continue to step forward in faith while stepping forward medically as well. We welcome your prayers as we head into yet another area of uncharted territory with Faith.

Tuesday Tidbits - Paperwork, Cupcake Sheets and an Upcoming Appointment

2011-09-27T20:38:00.001-05:00

Lately I've been inundated with paperwork so that Faith can continue to receive SSI and Medicaid. Just recently I had to fill out forms to prove to the good people at Social Security that Faith still has a disability and is still eligible to receive funds.

It was a lot of paperwork considering I had to verify all of her doctor's appointments within the last 12 months and also to prove she had been seeing a physical therapist, occupational therapist and speech therapist. Faith went to the SSI office with me on Monday since she didn't have school. The little waiting room was packed but we thankfully didn't have to wait long. When we left Faith yelled out, "Bye guys!" She was pretty happy to get out of there.

Most people who know Faith knows she has a slight obsession with cupcakes. She always wants cupcakes for her birthday and for Christmas we make and give out Happy Birthday Jesus Cupcakes. She has had a pair of pink cupcake pajamas and now has green ones. She even has a stuffed cupcake that was made for her by one of her aides at school. Then her auntie Barbara came over one day and gave her a decoration to hang on her wall - a picture of a cupcake.

I have been thinking for a while how cute it would be for Faith's room to have a cupcake theme. So imagine my excitement when I actually found pink sheets with cupcakes on them! I found them at Kohl's and not only did I have a $10 off coupon but they were also 60 percent off. They are perfect for Faith's new bed that we got her this past summer.

This Friday Faith sees her specialist who keeps tabs on how all of her therapy is going and measures her range of motion in her arms and legs. We'll also be getting hip x-rays done so we'll be able to see how her left hip is doing. It is slightly displaced which causes her left leg to be slightly shorter than her right one. I'm praying there is no change but I am expecting a round of upcoming Botox injections. Her leg muscles seem tighter and I think her not sleeping well lately might be a result of that. I am a bit relieved she'll be seeing her specialist as I am concerned about her hips but as always with this appointment, I am feeling a little anxious as well.

Lots of things going on, I'll be updating about Faith's appointment later this week. Please pray with us that all goes well and that Faith continues to progress as well as she has been.

Singing Along at Barney's Birthday Bash

2011-09-21T18:04:00.002-05:00

Had it not been for the one fateful day that I had a craving for Little Caesar's pizza, I might not ever have known that Barney was coming to town. But there I was at the counter waiting for my medium pepperoni pizza when I noticed a flyer with a picture of the big purple dinosaur. He was coming live to Bismarck with his friends, BJ, Baby Bop and Riff - I couldn't wait to tell Faith.

Barney and friends appear live at the Bismarck Civic Center

I don't know how old Faith was when she saw Barney for the first time. A receptionist at pediatric therapy gave us a Barney VCR tape and Faith loved it. I started letting her watch Barney on PBS and then we started collecting the DVDs. All the while I couldn't believe I was letting my daughter watch Barney - me and my friends made so much fun of him when he first came out on TV. But as I watched along with Faith, I discovered all of the cute songs and some of the good things that Barney had to share. I will admit though that for a while there, it did get a little tiring when all Faith sang was "I love you, you love me, we're a happy family, with a great big hug and a kiss from me to you..." over and over and over again.

Anyway, last night was the big night and it didn't start off so well. She kept saying she wanted to stay home and Rob almost let her but I wasn't about to give up so soon - the tickets were already paid for and I really wanted to try to use them. When we got to the Big Building (what she calls the Civic Center) she was still apprehensive but I just knew as soon as she heard Barney's voice she would want to go in and see him. Finally we went over to the ticket guy, let him scan our tickets and made our way into the dark auditorium. Barney was already dancing and singing on stage and when Faith saw him, she couldn't quite believe it.

An usher came over to ask if he could help us find our seats but I told him we wanted to hang out in the back a little longer until Faith got more comfortable. When she turned to me and yelled, "It's Barney!" I knew she was ready.

Barney and friends live!

Faith having fun and singing along!

I was so thankful and relieved that she overcame her nervousness and was able to relax and sing along to all of the songs. And when Barney's friends came on stage, she yelled out all of their names - I think she was the loudest kid there!

From an adult perspective I was a little surprised at how boring the stage was - just one backdrop for the whole show. It was just the four dinosaurs on stage along with four accompanying singers/dancers - who were all adults. I thought it was strange they had adults and not kids. I was thankful we hadn't forked out the big bucks just to sit closer to the stage. But anyway, I did have fun singing along with Faith to all of the songs - there were only a few new ones that we didn't know.

At the end, everyone got to sing Happy Birthday to Barney (not sure how old he turned) which was one of Faith's favorite parts. But then after that, Barney's three little friends sang a slow, mushy song to Barney and I could tell Faith was having a hard time trying not to cry. She is very sensitive to that kind of music and often will end up in tears. I figured I better get her coat on and start heading out before they broke into "I love you, you love me." I was a little late though and when they started singing their traditional farewell song Faith was crying. We got out the door and into the van and all she could say was how she wanted to go back and see Barney again. She managed to calm down though and then got all excited to tell her dad about the great time she had at Barney's Birthday Bash.

Check out the little video below of Faith singing along to "Baby Bop Hop!"

Making a Splash

2011-09-17T14:08:00.001-05:00

Second graders at Centennial Elementary get to enjoy a program called SPLASH that gives them a chance to go swimming once a week in September. Instructors at the YMCA teach the kids different swimming strokes, water safety and survival skills. The kids are in the water for about one hour.

Of course since Faith loves swimming I thought she would be very excited. Unfortunately though she seemed more nervous about it than anything. We skipped out on the first week but we did make it this week and she had a blast! It was hard to tell who was having more fun - Faith or her instructional aide that was with her in the pool.

Faith kicking her feet up in the water

Faith tries to touch the bottom

Faith tries to do a back float

Our Spur of the Moment Trip

2011-09-05T21:07:00.001-05:00

This past weekend we took a trip that was sort of spur of the moment. We have been wanting to take a little trip to see how we do traveling in our van so we decided to venture to - where else - Aberdeen, South Dakota.

It took us a while to get out of our parking lot because we kept having to run back upstairs for things like maps, plastic bags, water, and of course Faith needed to be sure we had her personal PlayStation (PSP) so she could watch her videos and listen to her music.

Since we were going to be in southern North Dakota, I wanted to go through Ashley on our way to Aberdeen. I used to live and work there so I just thought it would be kind of fun to see the little community 13 years later. We ended up missing the turn to Highway 11, and then we had to detour because of road construction which lead us to Eureka, South Dakota. Rob was thrilled because he is a big fan of the Sci-Fi TV show, Eureka, which actually takes place in Oregon but is filmed in Vancouver, British Columbia.

We have found it!

While Rob was checking out the information center in Eureka, Faith asked me what country we were in! Maybe she thought we were going to Canada!

After finally arriving in Aberdeen, we hit the Super 8 but they didn't have any available accessible rooms that were non-smoking. We opted for the Ramada Inn instead which turned out to be great and included a free hot continental breakfast in the adjoining restaurant. For supper we hit a Chinese buffet that reminded us a lot of China Star.

Faith finally being able to lay down and stretch out

After a somewhat good night sleep, we took our time checking out since check-out time wasn't until noon. Then we finally got going and ventured to Wylie Park - home to the Land of Oz and Storyland. We had a lot of fun taking Faith around the park to see all of the nursery rhyme characters. Her favorites were The Three Bears and Goldilocks and Mary Had a Little Lamb. She also really liked Old McDonald's Farm. The barn had live animals like chickens, sheep, pigs and goats. Later, we walked around the loop that contained all 50 flags for each state. I had known that Rob knew most flags for each country but he also knows the states as well.

Faith at Storyland in Aberdeen, South Dakota

Rob and Faith in Old McDonald's Barn

Rob teaching Faith all of the state flags

On the way back we did go through Ashley and it looked pretty much the same as when I left - maybe even a little smaller if that's possible. I had to stop by the newspaper office as well, which is where I used to work. Of course it was closed, as was the rest of Main Street on a Sunday. Then we went north up to Wishek and continued on the very scenic route of 1804 along the Missouri River.

our traveling girl

Faith did great the whole time. She was singing along with her music and just seeming to have a lot of fun when we stopped somewhere. We were so proud of our good little traveler! And the van is great to travel in - it has so much more room compared to our little Hyundai. Faith's feedings all went well while we were cruising along and we found that the bench seat in the back is just the right length for getting her changed. Despite Faith coming home with a cold, it was a fun little trip. Who knows where we'll venture to next!

Faith's IEP Meeting

2011-09-02T21:52:00.001-05:00

Today Rob and I met with nine members of Faith's IEP team at school this morning. The meeting was at 8:00 a.m. so we had one of our respite care providers come get Faith ready for school and take her there, which all worked out very well.

The purpose of Faith's IEP is to set goals for her to work on throughout the school year. The whole team works together to ensure these goals are met, this includes me and Rob who work with her at home to help her attain some of these goals. I must admit that probably the hardest part of the meeting was discussing the fact that she is not making any progress with learning words and having the ability to read. I discussed this in a post from this summer after an eye appointment in which the doctor told us she is probably having trouble getting her eyes to track left to right. It is somewhat disheartening but as the doctor told us we should keep trying and finding new ways to help her eyes "attend" as they called it.

One person on Faith's IEP team is a vision specialist who works with the students at school and she gave us some great ideas on how we could get Faith to move her eyes around and focus on various objects, colors, shapes and words just to help increase her tracking abilities and to sort of train her eye muscles to track and identify in a quicker manner. We also decided to do more with Faith from an auditory standpoint. Some students with cerebral palsy do not have the ability to read so they do everything through auditory input as opposed to visual input. I do continue to have hope though that Faith will be able to read.

One of the more exciting things we talked about at the meeting is the assistive technology Faith is getting that will make learning much easier for her at school. She is going to be having a laptop mounted on her chair and all the books and other lessons that the other kids are working on in the classroom will be downloaded onto Faith's computer. So that for a book that the kids are reading, Faith will have that book on her computer and will be able to turn the pages by using her switches. These are the same switches Faith uses to drive her chair - it is amazing to me that they can connect all of this together for her!

Another exciting venture this year is that Faith will be in her power chair all day at school. This is especially nice for me because after school instead of having me push her up the hill, she'll be able to drive up the hill! She did it today and she did so good! Of course though when we are trying to leave school, she has to stop and visit along the way. It was cute because as we were heading towards our apartment, one of her aides who is also a crossing guard, was coming down from the hill so we stopped to chat. Faith was getting a little bored and ended up doing circles in her chair while she waited for us to stop talking.

All in all, the IEP went very well and I feel so blessed that Faith has such a great team to work with her. I believe if anyone can help her to achieve her goals, it is this amazing group of people. (This includes her fantastic instructional aides who help her in so many ways). I am also really impressed with Faith's teacher and I know Faith really likes her. I really believe 2nd grade is going to be her best school year yet.

Tuesday Tidbits - Challenging Mornings and Back to Praying

2011-08-30T19:56:00.002-05:00

Oh boy! These last two mornings have been tough ones as far as Faith getting ready for school. Everyone seems sort of perplexed by her behavior. She cries and screams and throws a fit as soon as I start getting her dressed for school. She tells me repeatedly to "Stop it!" I seriously wonder what the neighbors think during all of this. At some point she does calm down but why does she even do it in the first place? Does she seriously think that by throwing a fit we're not going to send her to school?

Both her morning and afternoon aides say that when she is in the classroom she is a little tense and her arms are bent up stiff like she can't totally relax. I'm hoping this will get better as she gets more used to her new classroom. Despite her bits of anxiety, her feedings are going well at school for which I am very grateful. Last year we kept having episodes of gagging and throwing up and we ended up seeing a nutritionist to see if we needed to make any adjustments to her food. We also switched her over from the liquid Senna to Miralax which is working well for her.

Today she got to be the helper of the day or as her teacher calls it, "Top Banana." I mistakenly thought this meant she had to bring snacks for everyone but turns out all the kids bring their own snack, which is different than in kindergarten and first grade. The kids didn't mind having an extra snack! Also she got to bring show and tell. She brought her favorite book, "We're Going on a Bear Hunt" and with the help of her teacher even said the words to the book aloud to her classmates!

Anyway, after a couple of such rough mornings getting Faith ready for school, I was so thankful to get back to Moms in Touch and start praying for the kids in school again. I found out that these prayers are needed at Centennial as some of the rooms are nearly over-flowing with new students and there are a shortage of aides. There are also a couple of new students who have special needs. I have been praying for Faith about school but it feels good knowing there is another mom who is praying for her too about the same issues.

During these past few days that Faith has been in school I am discovering just how wonderful it is to have a vehicle at home just waiting for me to drive to Wal-mart to pick up needed supplies or food. Since we got the corroded wire fixed, the van has been running great.

Today was Faith's last physical therapy session at Medcenter for the summer. She has done great in her gait trainer this summer and we'll be getting one at home so we can continue working on that with her here. It would be great to have Faith walk down the hall with me to grab a pop! She'll be getting a new, much more modernized stander as well as she is outgrowing her old one. For some reason, she just won't stop growing - hard to believe she will be eight years old in two months!

Let Second Grade Begin

2011-08-25T16:03:00.001-05:00

Well, just as I thought, this morning didn't go too well getting Faith ready for school. She was in tears for most of the time we were getting ready. I tried to sit with her and console her and through her tears she said, "I'm not ready for school." When I asked her why she replied through even more tears, "I want to stay home with you."

It was sad and endearing at the same time. I'm not sure what finally brought her out of her tears but she did calm down as I was fixing her hair. Then when her dad tried to talk to her she told him she was busy getting ready.

Rob and I both got to walk her to school and since her morning aide was nowhere to be seen, I took her downstairs to her classroom. On the way, we ran into several teachers who gave Faith a very warm welcome back to school. She received many compliments on her outfit and her pretty hair. She was smiling and talking and I knew at that point she was going to be fine.

At home, I kept watching the clock and wanting to go get her to see how her day went. Neither of her aides called so I figured that was a good sign. Then finally it was about three o'clock and when I went down to the school she was sitting outside with her afternoon aide and a friend of hers who is also in a chair. When she saw me she yelled, "Mommy!" It was a very happy moment and I was pleasantly surprised that she didn't look very tired.

She had been a little nervous in the morning after I left but her afternoon aide said she did great and was totally herself. Faith told me some of the things she did in school like doing a puzzle, going to the library and about a few of the other girls in her class. That is my favorite part of the whole day is hearing about hers. We'll see what tomorrow brings!

Getting Ready for School

2011-08-24T14:19:00.001-05:00

Tomorrow is the big day - Faith officially becomes a 2nd grader. We have been spending the last couple of weeks buying school supplies, shopping for school clothes and having fun driving the van around. Then yesterday to help her get emotionally ready for school we read the list of kids in her class and had a little pretend school session at home - of course she wanted to be the teacher! She does say that when she grows up she wants to be a teacher. She definitely has the giving instructions part down.

This morning I agreed to help volunteer at one of the booths for open house so parents could come in and pay lunch money, pay PTO dues, buy spirit wear - things like that. Faith was very patient with me at the booth and it helped when people came over to visit. After we were done with that, we ventured downstairs to meet her teacher and see her classroom. I was thankful that there was an instant connection between Faith and her new teacher. Faith ended up telling her, "You're a good teacher!"

Faith at her custom-made desk in her 2nd grade classroom

We also talked to her special education teacher, a few other teachers who know her, one of her aides, some of her friends and their parents, her music teacher and even a new family who just moved here from Massachusetts. It was a nice feeling knowing there are so many people at the school who care for Faith and who are genuinely concerned about how she's doing.

While Faith had fun this morning for the few hours we were at the school, the real test will be how she does tomorrow morning. I'm praying she does well.

Assistive Technology

2011-08-15T09:46:00.002-05:00

Assistive technology helps students succeed in the classroom. There are many types of assistive technology to help students with different special needs. In the photo to the left, assistive technology called interactive switches allow Faith to drive her power chair and operate her computer at school. Read more by going to Assistive Technology Helps Students with Disabilities.

A Very Special Visit

2011-08-12T21:07:00.001-05:00

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