Tuesday, June 28, 2011

Looking for Answers Regarding Faith's Vision

Today Faith had her annual eye appointment. Her special education teacher from school came along because she had some questions regarding Faith's vision. Larissa has noticed when working on reading with Faith in school that if there is a sentence of three words like:

The Big Ball

Faith will just pick out the word she knows and say that one. And if she knows all three words in the sentence she just looks and  picks one but never says them in order from left to right.

Also, Faith's teacher said that when there are three lines of numbers like:

1  2  3
4  5  6
7  8  9

Faith can read them if Larissa is pointing to them individually but Faith can't read the numbers from left to right without them being pointed to. She just zones in on one number and says the one that catches her attention.

I am so thankful for Faith's amazing special education teacher who goes out of her way to make sure Faith reaches her fullest potential.

I've noticed at home that when we're working on her sight word flashcards, Faith will just glance at a word then look away and says a word she knows, even if it isnt' the right word. Sometimes I have a hard time getting her to really look at the word and then say it.

Both Larissa and I feel that the comprehension is there - she knows all of her letters if she sees them one at a time. Sometimes at Medcenter when we're taking the elevator she'll look at the big letter on the door and tell me what letter it is. She also knows all the sounds each letter makes. We worked with her a lot on this and I am so proud of her that she knows her letters, sounds and even some of her numbers. The difficulty comes when she sees a group of letters or words together.

In talking to her opthamologist (Dr. Samson), he did give us the news that Faith's eyes remain stable. He feels that she can see clearly and her right eye doesn't turn in like it used to during our pre-patching days. So all that is good. Dr. Samson was encouraged to hear that when Faith drives her power chair at school, she is getting good at visually judging distances and knows when to stop or when to turn.

Regarding these new issues that have come up with reading he said he doesn't know what's going on for sure. It's either a developmental issue and she just isn't ready yet and doesn't have the attention span or her eye muscles aren't allowing her to go from left to right.

It's hard to comprehend this because when we read, it's something that seems so natural and we're not even aware that our eye muscles are working. But with Faith this could be an area of her brain that received some damage and the nerves aren't allowing her muscles to do what they need to do in order to read.

It is a reality that some kids with cerebral palsy cannot read. But with Faith, since there are no definite answers, we have to keep working with her. Dr. Samson says that Larissa is already doing all of the right things - it just might be a matter of time.

I refuse to get discouraged about this. I have faith for Faith that someday she will be able to read. It may not be in our earthly timing but instead it will be in God's perfect timing.

Wednesday, June 22, 2011

An Afternoon at Hydro and Physical Therapy

A typical Wednesday afternoon for Faith...

Faith getting her stretches in the pool
Faith uses a wet noodle to help kick her legs behind her while working to keep her head up
After all that work, it's time to relax a little
Faith has come a long way since her first day in the pool when she screamed during the whole half-hour session. Rob had to get in there with her the next time then after that she was fine and started to have fun in the pool.

After we get out of the pool, I hurry and get her dressed so she's ready for her physical therapy session. One of the reasons she has hydro first is so that her muscles are more relaxed enabling her to use them more effectively in physical therapy.

Look how tall Faith is standing in her gait trainer! And notice her new tennis shoes!

Faith in her gait trainer taking some steps

Even though it is hard work, Faith really does enjoy her physical therapy sessions - as you can tell in this picture! I know one reason she enjoys it is because she has such great people who work with her.
Now after such a busy, active day, Faith will hopefully get a great night's sleep!

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!

Wednesday, June 15, 2011

Wild Wednesday

Ever since Faith stopped going to therapy at Medcenter last fall, I felt like we haven't been running around so much. It's actually been kind of nice. But now today I was reminded of how our days of running used to be and how we managed with only one vehicle.

This morning we had to get Rob to work then Faith had an appointment at Medcenter. We had about an hour before her appointment so Faith and I hung out at the library for a little bit. She picked out a Curious George book and I found a Roxanne Henke book I haven't read yet. Then we checked out The Red Rooster cafe which is located right in the library. I enjoyed a  delicious iced mocha and Faith had what else? Ice cream!

Then it was time for Faith's appointment. She had a mild meltdown in the waiting room and continued to cry when the nurse came in to get her temp.  She was nervous because she knew someone was going to be looking at her Mic-key button, which was the reason for the appointment. By the time the physician's assistant came in, however she had calmed down. The PA checked Faith's button and sure enough it was looser than normal because there wasn't very much water left in the little balloon that holds the button in her tummy.

The PA said there may have been a microscopic hole in the balloon part which allowed the water to leak out. I am so thankful we went in to have it checked. We would have been able to deal with it if it popped out at home, but it is scarier if it happens at school or with a respite care provider.

Afterwards, we made a trip home so Faith could have a feeding and a chance to relax a little before heading off to hydrotherapy. She had a blast swimming in the pool today. Unfortunately, I didn't get any pictures because in the midst of making sure I had packed her swimsuit, swimming diaper, extra briefs, plastic bags, Faith's hand splints, orthotics and her tennis shoes, I forgot I had left the SD card in my computer. For some reason, I can't store any photos on my camera itself. Hopefully next time, I'll get pictures - she looks so happy and relaxed when she's swimming in the pool

After hydro, she had physical therapy where she got in the gait trainer and did great! She took about 30 steps. Afterwards, she was pretty tuckered out. As soon as we got home, we had to start another feeding.

And now after respite care gets her, Rob will be home then I'll be off to hear Abby Johnson and some other pro-life speakers at a public forum at the Doublewood. It should be really interesting. While I'm doing that, Rob is going to be cheering hard for the Canucks to win the Stanley Cup tonight. They play in Vancouver and haven't lost a game in this series yet at home.

All in all it has been kind of a wild day and I'm looking forward to getting back to our somewhat normal routine tomorrow!

Friday, June 10, 2011

Who Needs Sympathy?

Guest Post by Stephen Gallup

Last week, a columnist for the local newspaper interviewed me in connection with a memoir I wrote that’s being published this year. It was a comfortable, low-key discussion in which he asked about the basic facts regarding my disabled son Joseph and what I’ve learned that might be of value to other families.

It was the sort of dialog that required no special preparation in advance. I just sat down with him and talked about the subject closest to my heart. But looking back on it now, one thing bothers me. In concluding the interview, the reporter expressed heartfelt sympathy for everything I’ve endured. He was being more than polite. I mean, he laid the compassion on with a spatula. Startled, and already thinking ahead to what I had to do next that day, I just thanked him and said goodbye. But now that final note troubles me.

I don’t want sympathy!

First of all, from the point of view of a new author hoping to promote his book, sympathy is not a good thing to be inspiring. Some readers say they dislike memoirs because so many examples of the genre are tales of woe, abuse, deprivation, and general unfairness, presumably written by people who somehow expected life to be all sweetness and light. I understand that view of memoirs, although it’s inaccurate. Stories, whether true or fictional, by definition have to revolve around a challenge or problem. So, if you like stories, it makes little sense to object when the characters have issues. It’s what they do with those issues that matters, in literature as well as in life.

Our family took certain stands with regard to Joseph’s condition. You may not agree that they were wise or appropriate, but from the perspective we had at the time, no other course of action seemed right.

We accomplished something, too. For example, our son, who was completely immobile at 18 months of age, when we took matters into our hands, was walking independently at 39 months. Also, because we had a plan, we were able to maintain a generally upbeat and optimistic frame of mind, while other parents known to us, who had similarly disabled kids, were living from one doctor appointment to the next and going through a box of Kleenex each time.

Yes, that glorious early momentum came at last to a grinding halt. Joseph is now 26 years old and still disabled. But at least he isn’t disabled because we never tried. There’s comfort in that.

But this is just the beginning of my reservations about being on the receiving end of pity. Although I can’t avoid being Joseph’s spokesman (whether he approves of what I say or not), this is his story, far more than it is mine. I seriously doubt that he wants anybody’s pity.

And what does pity mean, anyway? Robert Rummel-Hudson, author of Schuyler’s Monster, speculates on his blog that it’s one of two responses the world has for disabled kids: They’re either judged for failing to meet expectations, or they’re viewed as being inferior. Of course, neither response is constructive or helpful. It’s true that disabled people and their representatives are carrying a burden—but the same can be said for most folks. This is the main thing. It’s a rare soul who gets through life without encountering disaster or some extra difficulty.

If we can make life a little better for such a person, we are only doing what we hope someone else can do for us, if not today, then soon. If we cannot help, then the simple respect due to a fellow-citizen is appreciated far more than sympathy.

I wish I'd had the presence of mind to say some of this to the interviewer.

Stephen Gallup is the author of WHAT ABOUT THE BOY? A Father’s Pledge to His Disabled Son. For more information, visit fatherspledge.com.

Monday, June 6, 2011

Summer School

Daddy got to take Faith to her first day of summer school
Faith was full of questions this morning getting ready for summer school, or Camp Edventure. Many of them she already knew the answer to since we had been talking about it for a while. I think she wanted to be reassured of who her teachers were going to be, who was going to be her aide, when I was coming to get her etc. One of the questions she asked was, "How many days of summer school do I have left?"

She hadn't even begun and she already wanted to know when it would end! Seriously though, towards the end of the regular school year, she fought in the mornings about going to school. I think she was just getting tired and wanted a much-needed break.

She expends so much energy at school that she is exhausted at the end of the day. A nurse told me recently that kids with CP put out three times more energy than the average child because it takes so much work for some of them just to keep their heads up and try to have some control of their muscles.

I know she has enjoyed her week off from school but I think once she gets into the routine of going to school for four hours a day she'll really enjoy that time.

This morning, since Faith starts school at 8 a.m., Rob and I both got to walk her to school because Rob doesn't need to be to work until 8:30. Originally, we had Faith scheduled to take the bus to school but we figured since there was no snow to worry about anymore, we could just walk her down there and back home. Also, the bus wasn't able to get her until 8:05 and I didn't want her there later than the other kids. I think she's a little disappointed to not take the bus though.

When we got to school, Faith was especially happy when her friend, Chloe, came over to her and asked if she could push Faith inside. And when she saw her aide, she yelled out, "Hi Julie!" There was a little bit of confusion with some kids there from other schools not sure where to go. Due to the flood situation, many kids had to attend summer school at a different one than was originally intended for them.

During summer school she'll still be getting speech, occupational therapy and physical therapy once a week at school along with specialized academics twice a week. She'll also be getting physical therapy and hydrotherapy at Medcenter once a week as well.

I'm sure these 27 days of summer school that are left will go by extremely fast!