Fun Weekend

On Friday I ran Crew to PT for a quick mold/cast for new DAFO's. The pressure sores are healing quickly. He still has a small white blister on each heel with a red ring (about the size of a dime) around the blister but they are looking so much better. Thanks for your thoughts/prayers on our behalf.

After PT we headed to Crew's audiology appointment where we discovered that his tubes are clogged and he has negative pressure in his ears again. A follow-up appointment with the ENT today confirmed that the tubes are bad. They will probably fall out soon. The tubes aren't functioning at all but the ENT didn't think it was affecting his hearing. He suggested doing surgery again to remove the tubes and put new ones in. I wasn't happy with the suggestion so the doc said we could wait. I just worry that Crew has so much going on right now. We have multiple appointments each week and we are tweaking his seizure meds too. I am pushing to get the casting done so we can start Intensive Therapy at NOW I CAN.

S and H tagged along for these appointments and we also went to the AT lab on campus to pick up his wheelchair but missed getting there before closing. I realized that I had never taken the boys to my old campus. We didn't have time to walk around (maybe soon) but I did treat with Aggie IceCream. S asked me if I bought icecream there when I was attending college and I just laughed and said, "No, I was too poor". LOL. It's hard to believe I couldn't afford a $2 IceCream cone.

Friday night was also our ward Trunk-Or-Treat and Chili cookoff. I was so stressed out by the time we got there that I didn't even try the Chili. I decided to put shoes on Crew for the first time since his casts were removed and he did well walking (with support) from car to car. He loved filling his Elmo bucket with candy. The ward members were great about acknowledging him and praising him for walking. The treat bucket has become his latest toy. He plays with the candy and is just learning that the wrappers are filled with sweets;)

Saturday I ran a 5K with S. The course dropped down into the campground and then back up a long hill, through town and along the south side of the lake, through a swamp and back to the church. S lost me on the first hill. I'm fat and lazy and he is young, competitive and athletic. S came in 18th over all! Amazing for a 10 year old! I was 26th (2nd in my age group). Thats okay with me... 26 is my lucky number;)

H ran the Kids K. I was impressed with how fast he ran it. I believe he came in 5th or 6th overall. They gave all the kids medals and S earned a medal too!

Carl and I attended Stake Conference on Saturday night. It was so uplifting! I felt the talks were written just for me. We had a babysitter and it was nice to sit and listen and not worry about anything. Afterwards Carl and I went out to dinner. I had the Maddox sampler and Carl had steak and shrimp.

Sunday was our Regional Conference and since we have over 6000 members in our Stake (we are splitting next month) we can't all fit into the building at once. Our Stake was invited to the Dee Events Building to hear the speakers. We were almost late and just as we walked in they opened up another section and we filed down almost to ground level. I was sitting right on the end just a few feet from President Henry B. Eyering, Elder Dallin H. Oaks, and Elder Snow. Just before it started, President Eyering turned toward me, made eye contact and smiled. Oh, it made me so happy:) Crew was great about sitting through the whole thing (Halloween candy comes in handy):) I wish I had the talks in writing. I loved the messages but wasn't able to take notes and I have a very short-term memory.

The weekend continues today and tomorrow. The boys are out of school until Wednesday. I had the rare privelege of spending some time with S and H after Crew went to sleep tonight. We played Uno and it was amazing that everyone was getting along and having fun. Yeah!

Personalities

I love their little personalities. This pic was taken as we were rushing off to church last sunday. I love how sharp these guys look in their spiffy clothes except I'm bummed out about the mid-day sun blazing down on the top of their heads. Maybe a little Photoshop could fix the problem. What do you all think?

I Feel So Bad

THE CASTS ARE OFF!

We went in for our scheduled appointment today to remove the casts. Crew didn't like the cast cutter. It's loud and vibrates a lot! Usually Crew loves loud noises so I think it was the vibration that really freaked him out.

Oh, but he was so happy when they came off. Last night he was miserable. I thought he picked up my sore throat. I was up with him at 3am and 4am and again at 6. However, by the looks of this decubitus ulcer (pressure sore) its obvious that he was experiencing some serious pain. I feel bad and his PT feels horrible. So now I'm doing all I can to help it heal quickly which involves massaging the leg to get his blood flowing and keeping it from touching anything. Okay, it's his heel so I've been carrying him around all day. He hates laying on his tummy. I rolled up a giant towel and attached it to his calfs with masking tape (this keeps his heels from touching the bed) so he can sleep on his back tonight. I'll be keeping him home from preschool for the next week.

The good thing is that we had excellent results regarding "range of motion". We were able to get another 9 degrees. The PT wants to cast him again once this heals because he feels like we could get another 7 or 8 degrees. We will be taking extra precautions to cushion the heal next time.

My plans for Intensive Therapy have been pushed back 3 weeks so that he can heal and we can cast again. The pressure sores are scary. Please keep us in your prayers.

Neighborhood Party

Tonight was the 2nd Annual neighborhood Halloween Party! The families in our area get together and put together a carnival of sorts. It was a bit early this year and being the procrastinator that I am H's costume hasn't arrived yet. He was happy to wear an old Knight costume we had on hand, Crew was our injured bull rider, and S our little Mario man.

H and S were so excited for this night. I knew they were but I didn't anticipate how much Crew would enjoy the games, hayride, and costumes. The boys painted pumpkins, bowled with pumpkins, bean bag toss, musical chairs, shooting hoops... donuts, cupcakes, apple cider.

It was fun seeing all the neighbor kiddos in their costumes, lots of smiles and candy filled cheeks:) I'm not a big fan of the Halloween holiday but this neighborhood activity beats Trick-or-Treat night hands down.

Serial Casts

You wouldn't believe the looks I get and the gasps I hear when I take this kid into public. I'm starting to feel self-conscious... do they think I beat him?

We've had two long nights. I'm hoping we get some sleep tonight. I've spent hours holding Crew in the recliner at night not knowing if he is really hurting or just slightly uncomfortable.

However, I spent the day with him at preschool yesterday and he was very vocal and charming. I feel very blessed that he is basically a really happy kid.

The serial casts are a treatment method for increasing movement and reducing tightness in the joints. The PT hopes to increase his range of motion by 10 - 15 degrees.

Having the casts has been more of a pain than I thought. He is so heavy now and if I stand him up on anything slippery (like the tile) his feet fly out from underneath him. Reminds me of Bambi walking on the ice. Crew has a new wardrobe this week. I couldn't get the 3T pants over the casts so I bought him some bigger jeans and sweat pants too.

Hey, he's not sleeping again... I guess I better set up my makeshift bed. *rolling eyes*

I LOVE IT HERE!

The Baclofen Pump Trial

Monday was a long day. We made the trip down to the childrens hospital for the baclofen pump trial. Crew was a real trooper and responded well to the medicine. Again, this kid amazes me with his ability to "roll with the punches". When they injected the baclofen into the space around the spinal cord he didn't even flinch. The injection is much like getting an epidural except they use the EMLA cream at the site to numb the skin and it doesn't make your legs go numb;) Immediately after getting the baclofen he slept for almost 3 hours. Then after he had something to eat they got him up on his feet. He was real weak at that point and we waited another hour or two before they had him walk.

The doctor said he already has contractures. I didn't know:( The baclofen pump would help reduce spasticity which in turn helps fight against future deformities. There are risks involved and Crew is a candidate for the pump because he did respond to the medicine. It's up to Carl and I to decide if and/or when he gets the pump. There are risks involved: infection, overdose, withdrawal if catheter becomes kinked or torn.... The doctor wrote some goals of what we would want to accomplish with the pump. One goal was that he would improve his walking with an assistive device.

These big decisions are hard and its a matter of prayer for us to know which way to go.

On the other hand, Crew is not a candidate for the Selective Dorsal Rhizotomy at this time. He has too much underlying weakness.... meaning he uses his spasticity to his advantage, to help him walk. If they permanently took that spasticity away, he would be too weak to walk. They did mention that he could be a candidate for the SDR sometime down the road.

We finished the day off with eight botox injections in his hamstrings and gastrocks. Dr. Rehab injected more medicine this time. Crew was very cooperative. I don't know how he does it. I love my little man:)

Conference Weekend

Carl and I had our first experience of attending General Conference live in the Conference Center. Our bishop offered tickets to the Saturday afternoon session and we jumped at the chance. What a thrill it was to be there in person, to sit uninteruppted and absorb not only the words spoken but the warm comforting feeling present. I have so much to say about the talks given but because my feelings are so real and personal I plan to take the advice of Elder Henry B. Eyering and record them privately.

I'm thankful for the reminder to spend more time with my children and to simplify my life. Its time for me to evaluate where time and resources are being spent and prioritize. I love my kids and it's amazing to me how fast they are growing up. I want to be involved in their lives and establish a better relationship with them before its too late.

I loved the quote by Elder Boyd K. Packer: "That just proves that you can't tell by looking at a frog how high it will jump". How true this is. We all have great potential... it's what we do with it that really matters:)

Mileage, Motivation and Bravery

This morning I walked my normal 3 miles with hills. My friend and I go at 5:30 am. I am not motivated enough to do this on my own so I love it that she is willing to drag out of bed and into the cold with me. The time goes by fast because I talk a lot and she is a great listener:) I can't tell you how much I appreciate good friends. It seems that for me anyway, good friends are hard to come by. I am making a mental note to not blab on and on about myself and remember to listen more. I use to be a great listener and would always get complimented on being "a good listener". I don't know what it is.... maybe I'm just starving for some adult conversation, which is why I'm also starving for more comments. He he.

After taking the boys to school, I hauled Crew off to the hospital for his regular lab work. Just checking to see if his valproic acid levels are where they need to be. I asked for my favorite phlebotomist and he came right out. I wish you all could see how brave Crew is. He only flinched a bit when they stuck him with the needle. He moves his little face down by his arm, about 4 inches away from the needle and watches them draw the blood. He watches the whole time, doesn't squirm or cry. I'm such a wimp because when they draw my blood, I look away.

I drove him to preschool today because of the appointment. We got there a little late and as he was walking down the hall to his class the teachers would stop and say, "Hi Crew". Then an aide ran down the hall and announced to Crew's teacher, "Crew is here"! Teacher poked her head out the door to say HI and as she was watching he accidentally bumped into the wall. Miss S said, "Uh Oh" and then Crew started giggling and laughing really hard. He walked into the classroom and said, "HI" in his loudest sing songy voice. I couldn't help to think that what he really wanted to say was, "I'm here now... Let the party begin"!

After school, I took S and H to THE LAKE. H took his bike and S and I ran around the lake. It's been too long since we've been running and so it was a lot of running with a little walking mixed in. The path around the lake is almost 5 miles so that brought my mileage for the day up to 8 miles. It would be great if I was more regular about the running thing. I think I might actually have a chance if I wasn't lacking motivation. And when the cold weather hits my excuse list increases:)

I actually talked myself into going to Round Table meeting tonight. I should've been going all along but well... you know. There was loads of information and ideas to use in my Den Meetings. One of the scout leaders there looked so familiar... like I had just seen him today. I even knew his name, "Don", but couldn't figure out where I saw him and talked to him. It was really bugging me all night and then as I was leaving I saw him again and it came to me. He was the phlebotomist that took Crew's blood this morning. Doh!

Just Another Day

Today we had the Permobil rep at our home. We met with him and our favorite PT from Early Intervention to look at ordering a powerchair. I've been wanting to get the ball rolling for quite some time now and finally the sales rep had a chair and some time to visit.

We also considered the Robo which is a bigger chair but has the capability of lowering to the floor. Crew can't transition to a chair yet so we decided that we would go with the Koala since it is smaller and we will have to pick him up and set him in the chair anyway. Hopefully, down the road he will be able to either climb into the chair himself or transition from his walker to the chair. The sales rep left us a chair to "try" for a couple of weeks but we decided to get his measurements and start the ball rolling today because we really like the chair. The sales rep pointed out that he could guarantee my walls will not look so nice in the near future. I really didn't want to hear that because I've been fearing the worst for some time now. I guess there is a price to pay for some independence. Our PT said she has seen families screw plexiglass to the bottom 2 feet of their walls to protect them. That doesn't sound fun:(

It was my turn for hosting the cub scout group tonight. I gave myself a quick lesson on knot tying and attempted to teach the scouts. I've watched my brothers use those knots all my life on the farm and with the boat so you would think I had the skill.

We also made caramel apples and rolled them in chocolate chips. The boys were very excited about this and it was easy. You can bet our apples looked just as good as the ones pictured here;)

Afterwards the boys created their own obstacle course in my backyard.

Crew seems to be coming down with a cold. I've been trying to fight it off with Airborne and extra rest. I really really don't want him to get this cold because we will have to postpone our Baclofen Pump Trial which is scheduled for Monday.

It seems the blogosphere is asleep or something and I'm running out of things to say... Most of the time my life is pretty boring and I don't think there is anything wrong with recording the hum drum. Hmmmm..

S was on bath watch duty tonight and insisted I take a picture of the mohawk he created. "Post it on your blog, Mom", he said.