Wednesday, February 29, 2012

Dr. Seuss Hat

Caleb came down with another UTI on Sunday (his second one in 2 months).  Not sure what is going on but I don't like it.  He was UTI free for 3 1/2 years and all of a sudden we are having issues.  Grrr....Anyway, he runs a fever when he has a UTI so he has missed 3 days of school this week.  This week was also "Dr. Seuss Week" in celebration of Dr. Seuss' birthday in March.  Caleb has been been less than thrilled with missing school.  He is convinced that all of his friends are making all of these amazing Dr. Seuss crafts without him.  So, today I helped him make a hat to wear for "Crazy Hat Day" on Friday.
(Cutting out the template)
I love the look on his face.  He is wondering why his momma is always taking his picture and why his momma feels the need to take a picture of him cutting paper.  I am a chronic picture-taker, there I said it.

To decorate his hat I showed him how to take small pieces of tissue paper, twist them around a pencil, and then glue the tissue paper down.  He thought that was pretty cool...but after twisting about 5 pieces of tissue paper he was done.  He decided I would twist and he would glue.

Meticulously placing dots of glue.

And...drum roll please...
Notice the "accessory" we added to the side of the hat.  That is the pink clover with the speck from "Horton Hears a Who" (I made it with pipe cleaner and pom poms).  That was all Caleb's idea!  Too cute.  His face says it all.  I think he will be very proud to wear his hat to school on Friday for "Crazy Hat Day".

Oh and that top front tooth is very loose and will be the next one to fall out.  I imagine it will be out by the weekend :)  I'll take some extraction photos because I am a chronic picture-taker.

Sunday, February 26, 2012

Wheelchair Basketball

I have been wanting to introduce Caleb to wheelchair basketball for quite awhile.  I've known about a local team for quite awhile but you have to be six years old to play.  I've been slow in taking Caleb to watch the team practice because it is at 8:30 every Saturday morning, and it is a 45 minute drive from our house.  The selfish side of me has wanted to keep our Saturday mornings laid back and lazy because it is the only day of the week that I don't typically set an alarm.  But I really wanted to introduce Caleb to wheelchair basketball because I think it would be really good for him and I'm convinced that he will like it.  So, I set my alarm yesterday morning and we took Caleb to watch a practice.
There are quite a few kids on the team.  Different ages.  There are 2 other kids that we know through the local SB chapter that are Caleb's age.  Caleb was a bit reserved at first.  Hesitant to join in, but very interested at the same time.  The coach kept coming over to Caleb and asking him to join the other players but he just wanted to watch.

The team practices for about 2 hours and they really work hard during that time.  I was impressed by how organized it was and how the coach really kept them in line.  She challenged them but they were having fun at the same time.  It looked like fun to Glenn and I too.  I wanted to get a chair and join in!  Oh, and a few of the kids had sports chairs and they are AWESOME!

 After watching for quite awhile, Caleb's curiosity got the best of him and he had to get involved.

Of course, Caleb picks the pretty girl to practice with :).

Despite his uncertainty, Caleb enjoyed it and didn't want to leave when the practice was over.  We stayed for a few minutes to watch the older kids (teenagers) play and they are GOOD.  They actually travel and compete across the country.  Wow, I was so impressed.  How they dribble a basketball AND push a wheelchair is beyond me.

So, we will definitely take Caleb again next weekend.  I think there are a lot of really good skills he can learn and I think it will boost his confidence even more.  I guess my alarm free Saturdays are over...but that's okay, it is totally worth it.

(I'll try to get better pictures and maybe some video next camera died on me)

Tuesday, February 21, 2012

Ortho Clinic: Fitted for new braces

Caleb had Dental and Ortho Clinic today.  Caleb barely survived seeing the dentist. He did really well with the cleaning and the exam but he was NOT a fan of the x-rays.  He just couldn't bite down on those x-ray thingies (that is the actually medical term) without gagging.  So after being somewhat traumatized, the dentist gave Caleb this:

 The playdough came in handy as we waited to see the Orthopedic staff.

Getting a bit silly with playdough.

Reading a book as we wait. 
 Let me just tell you that this kid can read.  Really well.  I have been blown away by how well he is reading.  This time last year he was struggling to learn even a handful of sight words and now he can sit down and read books all on his own.  It is so fun to listen to him read.  I just love it.

From books to video games....more waiting.

 Time to get fitted for some new AFO's!

Caleb was really in need of some new AFO's.  He has grown so much that his current AFO's were so short that they weren't doing enough to support his legs fully.  I had noticed that his knees were bending in a bit when he walks lately and I was starting to get a bit worried but I was told today that it is likely due to the fact that his AFO's were too short.  His news ones will solve that problem.

 So the big decision:  What print/pattern did Caleb want for his AFO's this time?
Is that such a boy thing or what!  He almost went with the American Flag pattern (he is very patriotic) but then decided on the camo instead.  It will be a few weeks before we pick up the new braces, I'll post pics when we get them.

I want to brag about Caleb for just a bit.  He is walking almost 100% of the time at school.  He takes his wheelchair into the school and parks it by the classroom and it stays there until the end of the day.  He is walking (with his walker) the rest of the time!  And they do A LOT of walking during the day because they go to different classrooms, the cafeteria, the gym, outside, and he goes to the nurse 2x a day.  He is walking for all of that!  I am just amazed at his endurance.  When he was younger, my biggest hope was that he would be able to navigate around a classroom with braces and a walker and then use the wheelchair for everything else.  He has totally exceeded my hopes.  I truly never dreamed that he would walk as well as he does.  I just never expected it.  I think he will always need his wheelchair (and I am 100% okay with that) but I'm so thankful that he has this other option as well.  I'm just tickled to death.  I'm so proud of that boy.

Sunday, February 19, 2012

"7 Lessons from the community of disability"

I just wanted to share something that I read on another blog.  I started following this blog after I read the author's (Greg Lucas) book: "Wrestling with an Angel, A story of Love, Disability, and the Lessons of Grace".  You can read about my thoughts on this powerful book by clicking here.  Anyway, he posted the following "7 Lessons" on his blog recently and I wanted to share it.  It meant something to I thought it might mean something to some of you. (Warning: it's kinda long)

The tragedy of disability is not disability itself, but the isolation it often creates. This was one of the most important lessons our family had to learn. Sadly, we learned it the hard way. But hard lessons often lead to great insights and over the past few years we have had the wonderful opportunity to gain great wisdom from several families in many different communities.

While there are still many discoveries to be made along this journey, here are at least 7 helpful insights gleaned from the community of disability that have made a powerful difference in our family.

1. God is both sovereign and good.When you are given a child with a severe disability, it is essential that you see God’s sovereign hand at work in your family. Scripture declares that your child was not an accident or a tragedy, but wonderfully and purposefully knit together from a blueprint of God’s plan that was designed before the foundation of the earth.(Psalm 139:13-17; Ephesians 1:3-12). Disability is not a curse; it is the goodness and grace of God magnified in ways that many typical families never get to experience.

2. You have been brought into this community for a purpose.
I was very slow to realized the purpose and potential of our family’s suffering and hardship until I began sharing our experiences. 2 Corinthians 1:3-7 came alive during that time. Suffering brings us into the intimate presence of God where the sweetest comfort occurs. But we are not comforted to become comfortable; we are comforted to become comforters. Every single episode in our family’s experience with disability was an equipping of God’s grace to be shared with those in desperate need of His comfort.

3. Disability magnifies our vision for joy in the smallest things.Most families living with disability will testify that some of their greatest victories have been those moments typical families often take for granted. I remember the first time our son used the bathroom in a public restroom (at the age of 17). We had just walked into Walmart and Jake took me by the hand and led me to the men’s room. He pulled his pants down and tried to pee in the toilet. He missed the toilet completely, peeing all over the seat, the floor, the wall and the stall. But he didn’t pee in his pants! We were laughing, clapping, cheering and praising God in a urine covered stall of a Walmart restroom. Most people cannot comprehend the enormous victory of that day, but disability often gives us 20/20 vision to see the things that others seem to miss. This is a wonderful gift.

4. Community brings much needed perspective
As said before, the danger of disability is isolation. The danger of isolation is idolatry (yes, our disabled children can become idols). The blessing of community is perspective. We all need perspective to wake us from the potential of self-pity and self-centeredness.

Just when you think no one on earth could possibly have it more difficult than your family, you meet a single mother with severely autistic twin boys. And just when the single mother thinks she can’t go on, she meets a grandmother trying to raise a 10 year old girl with fetal alcohol syndrome. The grandmother watches as a young couple attempt to nourish their unresponsive child through a feeding tube between seizure episodes. These families are learning something extremely valuable from each other--perspective turns our inward focus to outward community. And within community, disability become ministry.
5. Outspoken men are often minorities.
While this is not always the case, oftentimes when it comes to family leadership, women seem to be the most outspoken advocates for their disabled children. A mother’s tenacity may seem like the most natural response to a child’s disability ("Mama Bear" is not one to be messed with), but when this tenacity stems from a father’s detachment or disillusionment, it can create a lopsided weakness in the family structure. A family living with disability needs a father of certain dependability. This dependability is often best cultivated and strengthened through other masculine men in the community of disability.

6. When marriage takes second place to disability, it ends up in last place.
It has often been said, “The best way to love your children is to love your spouse.” While very few couples would admit to neglecting this truth in principle, many neglect it in practice. Good intention, without deliberate application, leads to marital deterioration. The relentless care of a disabled child, added to the care of other typically developing children in the home, added to working overtime to pay medical and therapy bills, added to stress and depression and weariness, leaves little time for marriage maintenance. A marriage that is not properly maintained is like a car leaking motor oil. Sooner or later the cylinders will seize, the engine will blow, and the damage will be beyond repair.
Do whatever it takes to make space in your busy schedule for quality time alone with your spouse. Men, don’t wait for your wife to seek this; lead the way. It could be as detailed as planning respite care and adding a date night every other week, or as simple as ending every evening sitting on the couch laughing (or crying) about the day's events. Aside from daily intimate time with the Lord and His word, this will be the single most important thing you can do to protect your family from becoming the alternative sad statistic.

7. A child with a disabled sibling is anything but typical.
I have borrowed (and adopted) the term “typically developing child” from my good friend John Knight. It is clear and accurate language in the proper context. But the more time I spend with siblings in families touched by disability, the more I realize these kids are anything but typical (per se).

I have watched in awe as siblings have stepped into difficult situations rivaling the heroic status of soldiers, firefighters and police officers. I have seen awkward, backward teenagers discover their extraordinary gift and calling as compassionate caregivers. And many times when I began to feel pity towards one of these typical siblings I have felt the faint nudge of the Lord scold me with, “Pay attention, I’m doing something incredible in the life of this child as I conform them into the image of my Son.”

No school, public or private, can teach the deep lessons of life like the school of disability. I can say without hesitation that my sons will be better men because of their relationship with their disabled brother. Living with Jake has not only prepared them for the worst of trials, it has equipped them with a profound sensitivity to recognize the intentional hand of God in the smallest, most unsuspecting, details of life.

What an extraordinary gift their brother has been!

These lessons are not even close to being exhaustive. They are ongoing and ever developing all around us. The desperate search and refreshing discovery of each nugget of wisdom brings strength to our family and equips us to be poured out into the lives of others.

If you are reading this and happen to be new to the community of disability, welcome to the family! It is a wonderful, glorious, breathtaking journey that will open your eyes to the most precious things in life as it draws you closer and closer to the most precious truth for eternity.

Wednesday, February 15, 2012

Sweetheart Dance and Valentine Fun

I don't normally make a big fuss over Valentine's Day.  I actually think it is kind of silly but I have found a new enjoyment now that I have kids.  I think it is cute how excited Caleb gets about giving his friends Valentine cards.  His excitement makes me excited too.

Caleb had a "Sweetheart Dance" at his school on Friday.
He was so excited about going.  I definitely had the most handsome date there.

 I decided to give Caleb's wheelchair a little Valentine love.

So cute, right?  He loved it and gave me a big hug when he saw the decorated chair.

On Saturday, we worked on his Valentine box for school.
For some reason, this kid thought my paper cutter was the coolest thing ever.  Kids are so easily amused!

 We decided to turn an ordinary oatmeal container into a rocket ship.
I thought it came out pretty cute.

And I made these sweet treats for the kids in Caleb's class.

So, all-in-all a good V day in our house...despite the fact that I woke up with a fever and feeling like absolute death on Valentine's day.  I really think it is a shame that mom's don't get sick days or time off from work when they are sick.  I was blessed yesterday though because Caleb and Benjamin were both at school so I got about 4 1/2 hours to just lay on the couch and rest.  I watched "Courageous" which is a really good movie by the way...I pretty much cried through the whole thing and then I got the urge to hug my kids really tightly.  

But I digress, I hope everyone had a great Valentine's day!!

Saturday, February 04, 2012

Great Wolf Lodge

For Christmas, Grandpa Joel bought us an overnight stay at the Great Wolf Lodge.  We decided to surprise the boys on Thursday with a trip to the the GWL.  They had no idea we were going until we pulled up to the lodge.  The boys were so excited.

If you aren't familiar with it, the Great Wold Lodge is basically a hotel that has about a million different things to do.  The coolest thing is the indoor water park, but it also has restaurants, an arcade, a spa (even a spa for kids), and several different games and activities.

Our room was on the top floor so the boys got to see several of these fly past our window.
They thought that was pretty cool.

 The indoor water park is very neat. I've never seen anything like it.

(notice the socks and knee pads...looks a bit silly but it keeps those precious feet and knees from getting all scratched up)

Caleb did have a near drowning experience (that is a bit of an exaggeration).  Glenn tipped over in an inner tube and both he and Caleb went under.  Scared me to death but Glenn was quick and scooped Caleb out of the water quickly.  Despite the fact that Caleb does not like water in his ears or eyes or nose, he handled the near drowning (again, I'm exaggerating) very well.

I think the arcade may have been Caleb's favorite thing about the lodge.  The giant touch screen with "Fruit Ninja" was pretty cool (Caleb loves that game-and he's pretty good at it too).

Taking some time to color :)

All-in-all, a great time. Although I am learning that I do not enjoy sleeping with or in the same room with my kids.  I shared a bed with Caleb and he snored the entire night (he was very congested) and I could hear Benjamin sucking his thumb throughout the night.  Add to that, the nightmare I had that involved a wolf eating my head (it is called the Great WOLF Lodge)...I got about 5 or 6 minutes of sleep that night.  Despite the lack of sleep, we had a great time.

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