Sunday, March 4, 2012

The Ups and Downs of Faith and Food

This past week, Faith did something for the first time ever at school - she ate lunch. She tried everything on her tray, which included a turkey sandwich, glazed carrots (which she ate the most of), strawberries and a few bites of a breadstick.

Because Faith still needs help eating solids, her occupational therapist had Faith and a few other girls eat lunch together in a separate room. Faith has made the comment when we feed her that "that's for babies" meaning she knows that this is how babies eat - being spoon-fed by someone else. Since we know she is sensitive to this, we decided not to have her join her classroom at lunch for the time-being. But the fact that she actually got to have her lunch replace one of her tube feedings at school was very exciting. The next day she got to eat one of her favorite foods - mashed potatoes and gravy.

Each day the kids at school get a choice between a chef salad, ham or turkey sandwich and a hot meal. Each of them comes with different side dishes. We knew that one day an enchilada bake would be too much for her so she opted for the turkey sandwich again.

Faiths loves to bake cookies - and eat them too!
While eating lunch has been a big step forward, it has not come without consequences. Faith became constipated and over the weekend on top of that, she came down with a cold. Yesterday she was not able to keep anything in her tummy and threw up throughout the day.

Now today, we are sort of back to square one with her feedings. This morning she tolerated about 4 ounces of Pediasure diluted with water which is a good sign. Hopefully we'll be able to get her feedings back on track and then try a few more school lunches this week. She may not be able to eat lunch everyday if she gets constipated - for her it's just one more thing that requires the perfect balance. She is on her way though, she continues to eat more solids at home and we believe that one day she will eat school lunches every day of the week without any negative consequences!

Hopefully since Faith got lots of rest this weekend, she'll have a good week at school.

Saturday, February 25, 2012

Great News About Faith's Hips

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!

Saturday, February 18, 2012

Time Flies in February

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

Sunday, February 5, 2012

Faith On Ice - Our Curling Adventure

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!

Saturday, January 21, 2012

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

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?

Friday, January 6, 2012

Conscious Sedation - A New Experience for Our Brave Girl

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 a few new pics of our brave girl:

New jammies!

Faith getting ready for bed

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