Archive for June, 2010

Samuel’s Kindergarten Program & Graduation

June 30, 2010 | Updates

I’m not sure if I’ve mentioned how much I loved Samuel’s kindergarten teacher this year. If I haven’t, I should have. It would have saved me having to tell each of you individually throughout the year :)!

Samuel’s special education class is a good class and his teachers there are great. But, he gets to go to the “regular” kindergarten class for 1/2 an hour each day and that creates a special set of concerns for me - most of which center around him “fitting in” and being included.

This year, Samuel’s teacher (Mrs. K) was incredible at including him in her class. She went above and beyond anything that I expected and it made a huge difference for Samuel, me and for the other kids in his class.

Mrs. K treated Samuel like a superstar. And it made a huge impression on all the other kids. I could tell you story after story about how accepting they are of Samuel. And in the end, I would credit it all to his teacher and how she treated him.

STORY 1:

About a month into school, we went to school a little late. As I pushed Samuel towards his classroom in his stroller, his kindergarten class passed us in the hall. They were all in a single file line and passed by us one by one. As they did, they each (and every one) stopped and waved, stuck out their hand to touch Samuel’s arm or foot, said “Hi, Samuel” or went out of their way to smile and make sure he saw them. Every.single.one.of.them made sure they said hello as they passed in their own little way. The first 5 kids were cute, the next 5 were heart warming, the next 5 started to make me emotional and as the last few passed, there will tears in my eyes. I can’t even explain how much it made me love those little kids for their innocent acceptance of my little boy.

STORY 2:

A few days before the end of school, I went on a field trip with Samuel and his class. We went to the local high school to visit their swimming pool. Ninety kindergarteners surrounding a pool puts me a bit on edge :). But it was so fun to watch them listen and learn about the water. Towards the end, I shared Samuel’s story. I tried to do it in a way that they would understand. I wanted them to know that water is fun IF we are safe about it. Hopefully, they understood.

As we walked back to their school, two little girls asked if they could help push Samuel’s stroller back. I agreed and thought it so cute that they didn’t mind being at the back of the line walking slowly back to school as the other kids ran and jumped their way back. As we walked, we talked and they asked about Samuel. In the meantime, Nathan was jumping in front of Samuel’s stroller playing a sort of game of “tag” with Samuel. Another kindergartener soon joined in. But Nathan was jealous and didn’t want the other boy to play with Samuel. As I explained to Nathan that he needed to let the other boy play, it warmed my heart that there was a little jealousy going on :).

And then one of the girls said, “What’s wrong with Nathan?”

To which I replied, “He doesn’t want to share Samuel.”

She thought for a moment and then her little reply melted my heart, “You know…he really should share Samuel because he gets to see Samuel all the time and we hardly EVER get to see him.”

STORY 3:

This year, the kindergarten classes did their end of the year graduation and program together. Samuel’s teacher told me to be sure to come because they had something special planned for Samuel.I can only tell you that I was absolutely beside myself at what they performed. Ninety kindergarteners sat before us and sang and SIGNED eight or nine different songs. These kids knew the signs to ALL.OF.THEM. They probably know more signs than I do. It was overwhelming as the warmth filled my heart and I realized what a great service these teachers have done for these kids and for kids like Samuel - who often have to communicate in “different” ways. How much more accepting will these children be of them if they understand signing themselves? It was incredible.The last song, was dedicated to Samuel. It’s a song by Rachel Cook from Signing Time. The song was “Shine”. It’s actually a song that I love and can’t sing without crying. It talks about kids who are disabled and who shine in their own way and in their own time. That song did make me cry…especially as the kindergarten teachers sang it and those cute kids signed it.

STORY 4:

Samuel’s kindergarten class made a book this year where they each contributed a drawing and a short story. In order to include Samuel, they wrote his story for him. It is the last story in the book and it is beautiful. I’ve included scans of the pages below. The story is TRUE. No exaggerations. I’ve seen the kids cheer for Samuel on a daily basis as he enters the room. I’ve heard of them jumping around in front of him as he chooses one of them with his wiggly little feet. And I can’t explain it, but they truly do love him and accept him like he is one of them. They know he’s different, but they don’t care.

As I was packing up to leave his classroom after Mother’s Day Tea this year, I ended up across the room from Samuel and watched him as he sat in his chair alone. One child after another came up to him to tell him good-bye. There was no one there coaxing them to do it. There was no one standing by Samuel to even see them do it. They just did it on their own for the sheer fact that they wanted to. They would touch his arm or grab his little foot. They would wait for him to look at them. They would softy tell him good-bye or tell him to have a fun day. And he would break into a big grin each time they did.

Thus I have to end this year with a huge THANK YOU to his teachers! Thank you for including him. Thank you!

Tanner’s Graduation

June 21, 2010 | Updates

Tanner’s graduation was a lot of fun. We had lots of family come to spend the afternoon with us. The graduation was well done and even though there were a lot of speakers, it didn’t last too long. Tanner’s graduating class was about 450 students, but they moved them right through the line to receive their diplomas. I do have to say that it was really strange watching him graduate. It seems like not that long ago that we graduated. For a moment, I felt really old…luckily, that moment was fleeting :)!

Afterwards, they had a fun party at the local sports center that lasted all night. We didn’t see Tanner until 6 am the next morning. I know he’s glad he’s done with school for awhile. I am too!

The Graduate!

Everyone that came to see the big event.

Tanner with all of his grandmas…no wonder he’s so spoiled.

Nathan with all of his grandmas…now THAT explains a lot!

Waiting through the speeches.

The graduating class.

Now we just need to get him ready for his mission…which by the way is close on the horizon. He hit “submit” on his online application on the 17th of June…just 24 hours after having his wisdom teeth pulled! Now we’re just waiting on a few final interviews and then we’ll be waiting impatiently for his call. Whew! I’m not sure whether to be excited or scared to death!

May…the fast version…

June 17, 2010 | Updates

My Mother’s Day card this year was awesome. It says, “You are awesome, awesome, awesome, awesome…” over and over and over again. I love it! Samuel’s class also had a Mother’s Day Tea that was so cute! They also had a graduation program, but that is a whole post of it’s own. (Click on the images below if you want to enlarge them.)

        Ben played soccer and did pretty well, I might add. He also ran the Wellsville Mile in the POURING rain. I drug Nathan and Samuel with me to watch him run. I haven’t been rained on like that in years. Samuel was well covered in his stroller, but he kept pulling the cover off so he was soon drenched. Nathan decided he didn’t want to wear his hat and it rained so hard it was running down his cheeks. My cowboy hat got wet enough it ended up being pointless to have worn it. And Ben had gone to school with nothing but shorts and a t-shirt on so when I found him 2-hours into the event, he was drenched and shivering and still had to run his race. It wasn’t very fun, dang-it. Hopefully, it will be better next year. Ben’s school class did an end of the year talent show and sang, “I believe I can fly.” It was so fun! And now Nathan sings that song all the time.

Weston turned 14, asked everyone for money and bought a leopard gecko with it. I think it is so COOL (when it’s in the cage)!

We spent a weekend at a wonderful cabin in Sundance thanks to some very special family members who weren’t afraid to have a family of 7 use their place. (Actually, it’s a very kid friendly place and they rent it out often so if you’re ever headed to Sundance, ask me where you should stay!) Click on the pictures below to enlarge.                 Tanner graduated from Seminary AND High School - which also deserves it’s own post but I’ll post my favorite picture from it for now… I had yet ANOTHER birthday - number thirty-eight to be exact. Can’t believe it’s been twenty years since I graduated! (Sorry, no pictures. It was the same day as Tanner’s graduation so those pictures will have to suffice.)

School ended and all I can say is, “WHEW!”

We went camping for Memorial Day weekend. Samuel got the flu while we were gone. It only lasted 24-hours. It was also the day that it rained all day so we just stayed inside all warm and cozy. The rest of the weekend was great. Man, I love the sun!

And that’s May in a nutshell.

Hey, I think I’m almost caught up. I was beginning to think that would NEVER happen :)!

More cute stuff from Nathan…

June 14, 2010 | Updates

OUR TRIP TO SMITH & EDWARDS:

Ben: “Hey, mom, can we stop at Smith & Edwards on the way home?”

Nathan: “Yea, mom, can we stop at Strip & F-Words?”

NATHAN BRUSHING HIS TEETH:

Nathan: (In the bathroom alone, I hear the sudden whirring sound of an electric toothbrush.)

Ben: “Hey! Nathan! That’s my toothbrush!” (as he runs out of his room and into the bathroom).

Nathan: “Ben, GO.TO.BED!”

MOM’S FAVORITE QUESTION:

Mom: “Who loves you?”

Nathan: “Mom.”

Mom: “Who loves me?”

Nathan: “Mmmmmmmmmmm………………….DAD!”

OUR TRIP TO THE GROCERY STORE:

Nathan: (Pushing a tiny grocery cart around the store and trying to sneak away with it while mom is going through the checkout line.)

Mom: “Nathan…stay here.”

Mom: “Nathan…STAY HERE.”

Mom: “NATHAN.”

Mom: “NATHAN!”

Nathan: (Hands in air like he’s completely innocent.) “Well…….what am I doing?????”

OUR NEXT TRIP TO THE GROCERY STORE:

Nathan is again pushing a tiny grocery cart around the store. Can someone please tell me whose idea it was to put these tiny carts in the store? I know they thought it would be fun for little kids, but who was thinking of the other patrons - not to mention the sanity of the parents?! My kid knows the tiny carts are at that store and therefore, feels he needs one. I need him to be IN a cart strapped firmly down, not IN CHARGE OF ONE. Seriously…not a good idea!

So, he’s running around pushing his little cart way over the unposted speed limit and I’m pretty sure he’s going to kill someone when suddenly he disappears around the corner and down the next aisle. “NATHAN,” I say in my sternest voice. And I hear him turn his cart around and come back. Only when he rounds the corner this time, his cart is chuck full of toys! What in the world? He was gone for like 15 seconds!

Oh, how I could go on. It’s a good thing he’s dang cute!

Did I Mention…

June 11, 2010 | Updates

that Samuel is now on NO baclofen? (Since the 5th of April, actually.)

You may not remember, but Samuel got his baclofen pump in August of 2005 due to his severe spasticity. It is a large metal pump that was surgically placed in his abdomen to deliver baclofen medication directly into his spinal fluid. This makes it so he can receive smaller doses of the medication with greater benefit. It is medication that helps keep those with cerebral palsy from forming all kinds of contractures in their body. Although it can be helpful, it isn’t a miracle cure. It slows the process of the body contracting, but doesn’t stop it. And it can have difficult side effects. The most difficult for Samuel were the decreased ability to use his muscles resulting in no head control at high doses. We also discovered that at higher doses he can’t control his bladder as well and we often had to cathe him when he wouldn’t go.Originally, Samuel was at a dose of 1500 micrograms per day. The average dose for adults with the pump is 300-700 micrograms per day. Samuel was 2 years old at the time.

In April, we filled the pump with saline. It has taken us 5 years to reduce his pump down to zero. The withdrawals have been terrible and I’m glad to say they are OVER! Our goal now is to remove the pump. Samuel really doesn’t need it anymore. His tone has changed from severe spasticity to more athetoid type movements where he moves himself constantly and keeps his own range of motion. Although the constant moving comes with its own set of difficulties, I much prefer them over the spasticity. Most children with high tone end up needing tendon release surgeries, knee release surgeries, hip surgeries, rods placed in their backs due to scoliosis, etc, etc. And that’s not mentioning all the pain that being so tight causes them. I much prefer to deal with my little wiggly boy than surgery after surgery and cast after cast. And I can’t imagine the heartache that those things cause most parents of children with cerebral palsy. There is not one day that I take the fact that we aren’t dealing with that stuff for granted…not one.

Now…if you want to know what I credit as having helped Samuel go from severe spasticity to athetoid cerebral palsy, I’ll tell you without hesitation…Hyperbaric Oxygen Treatments. I am convinced, without a doubt, that they made the difference. Samuel couldn’t move until we started HBOT and within 40 treatments he was bending one leg and within 40 more, he was moving everything. It also helped his vision, his swallowing, his awareness and more. If I could go back, the only thing I would do different concerning HBOT is I would do more treatments and sooner!

So, that’s my soapbox! I didn’t mean to get into all of that, but we are so excited to be thinking about getting Samuel’s pump removed. It is a big surgery and that stinks. But it will be one less thing he is dependent on and I’m sure he will be happy to get that hockey puck out of his tummy! They won’t let us do it for a few months just so they can make sure he absolutely doesn’t need it. But all is looking good so far.

So, now you know!