Neurology

My frustrations in getting an appointment with our favorite neurologist have been significant. I've been calling weekly since October 1st and daily since December 1st. I really don't mind waiting several months to get in... that is to be expected but they weren't even able to schedule us. Aargh! So... when they called last week with an opening for the day after Christmas, I jumped at the chance.

The appointment was a follow-up to discuss medications and such. It's been over a year... The meds are working great and his blood levels are within a comfortable range. While Crew's developmental progress is significantly delayed, he does continue to progress. His head size (he is finally wearing a 6 - 12 month hat) is clearly a reflection of the Microcephaly. I hate that term because it basically means small head, small brain. The brain/head continues to grow but it will never "catch up". Crew's head size isn't even on the charts... not even close.

All in all, the appointment went well and each boy came home with an adorable Christmas Moose:) I love the Childrens Hospital here.

Merry Christmas

The kids are finally asleep. Presents are wrapped and under the tree. The walk and driveway are shoveled... it's a WHITE Christmas afterall!

May you all feel the peace, joy, and love of our Savior, Jesus Christ.

Merry Christmas from our family to yours:)

Meeting Santa

Don't ask me why this three year old little boy hasn't met Santa before now. Come to think of it we haven't even really talked to him about it. This is the first year Crew will be more interested in his new toys than the wrapping paper and bows. Well... at least that is what we are hoping for;)

Santa made a visit to the preschool yesterday. They said Crew was fine sitting on Santa's lap but he wouldn't stop staring at Santa. Well, I can't really blame the kid.

Social Imitation

We had our annual family circus last sunday. Getting a good Christmas shot is always interesting. I think the big boys were trying too hard and Crew is never looking in the right direction. In an effort to break things up and kinda shake it off, I suggested everybody "cough in their sleeves". I don't know why.... I guess its funny to me since Crew recently started imitating behavior. He started the cough in your sleeve thing after seeing his therapist do it. He also likes to pretend to scratch his nose.

Tonight before our pre-bedtime "shooting hoops" ritual, I could tell Crew wanted to play ball so I signed "ball" but didn't say anything (usually I combine sign and speech) and immediately Crew turned his head toward the toybox and reached for the ball. Okay, its simple proof that he totally "gets it"!

And "NO" we still don't have a Christmas card picture.

All Smiles

Making the best of the freezing cold weather here. Tonight I made mint brownies... brownie mix with melted Andes mints on top. Yumm! Chocolate makes everything okay, at least that has been my experience;)

Only 376 More Miles

Two more days.... two more days, only two more days!

Today was good! I think we only had tears once during therapy. Lots of whining which is nothing after last Mondays meltdown. Seriously, I've never seen anything like it. Crew insisted we go outside so we took him out to the parking lot in his Neurosuit and walker. Whoa, talk about motivation. He was running around like his old happy self but we were freezing. Literally, it was like 15 degrees so we went back inside and he freaked out. It probably took ten minutes to get him calmed down. Needless to say we learned our lesson... we will be staying indoors for the last two days.

Tressa (our favorite PT) is going with us in the morning. It will be fun to have some company and see what she has to say about it all.

Only two more days:)

Keeping in Touch

I'm not sure how or when it happened but the other day I realized how very rarely anyone calls me to simply talk about nothing in particular. You know, doesn't every woman need those friendships. Thankfully I do have my sisters who will patiently endure my prolonged ramblings. And I have my good neighbors that are always willing to lend an ear. Without a doubt I know that its likely my fault. I've never been good at instigating "girlfriend outings" or phoning regularly. Ironically, friendships are near the top of my list of priorities but not before God and Family.

FAMILY.

I once thought that after my kids passed toddlerhood I would finally have some time to myself. WRONG. Now we have piano, sports, homework...

Now we have therapy, doctor visits, insurance claims...

Here is who I've talked to on the phone today:
1. Our Durable Medical Supplier to check on walker hip guides and remind him to pick up loaner wheelchair that is parked in garage thus making our two car garage into a one car garage.
2. Our Primary Insurance case worker to inquire about Hyperbaric Oxygen Therapy.
3. Our Secondary Insurance case worker to inquire about mileage reimbursement.
4. My SIL to plan Family Christmas Party
5. The Cub Scout Co-teacher to discuss weekly meeting.
6. My babysitter to coordinate some time where I can catch up at work.
7. My 5 year old niece who kindly answered the phone while her mom was taking a shower. LOL
8. Dear Husband about this and that:)
9. Pediatric Neurology- in an attempt to get an appointment. (this is a whole other post)
10. My sisters answering machine.- I'm thinking sister is busier than I am.... Yes, it's possible!

My little buddy

We did it! We've completed the first 40 hours of Intensive Therapy. This week has been a hard one. I'm not sure what I want to say about it at this point. Maybe I'll be able to talk about it later. But for now, Crew and I will be enjoying a carefree... therapy free weekend!

Christmas in the Car

The title of the last post has been driving me crazy so I thought I'd quickly pop in. Thank you to all of you for the supportive thoughts and comments. It means a lot to me to know that we have our own little cheering section. The therapy is going a lot better. We had minimal tears today. I can already see that Crew is stronger and his tall kneel is looking better. I think his trunk support is improving too:) He really is doing well in the cages but doesn't really like his suit. He knows when the suit goes on he is going to have to work and work. I will have to take notes and share with you how his four hour daily therapy is broken down. Also, I have more pictures to post later when I'm not in such a rush.

I've had oodles of time to think about this Christmas season as I've been traveling back and forth. Also, I've enjoyed reading some of your Christmas memories, your traditions, expectations. Yesterday, in church we talked about what gift we might give our Savior this holiday season. Many suggestions were given and I know what it is I need to do to show him my love and appreciation. I have these internal struggles to let go of past hurts and to rise above. Oh, and it is so much easier said than done. It is my greatest desire to forgive and forget, be a little kinder... more loving, yet I continue to have these battles and there are days when I really do not like this situation I am in. However, I do know that life goes on and there really is a light at the end of the tunnel.

My oldest son keeps asking me what he can get me for Christmas and I say, "Good kids and a clean house"... (I stole that one from you Kristen). S is so tired of my answer and now he asks me what he can buy me for Christmas. Again, I tell him that he cannot buy me anything... that I just want him to treat his brothers kindly and be the best he can be.

Truly, there is nothing greater than peace and love and happiness in the home. Money cannot buy those most treasured gifts and I so I want to give of myself and overcome these obstacles.

In an odd sort of way, I'm thankful for the many hours I've spent in the car with Christmas carols playing. Crew and I have had some quality time together singing and munching on cheetos. I've also been thrilled to hear some new words escape his lips and watch as Crew develops his own method of communication with me. Oh, and I've learned that when I see his arms waving in my rearview mirror it means he wants another cheeto:) Love that boy!

Isn't it Friday yet?

We hit the roads at 6am this morning. As soon as I got on the freeway I could see that there was black ice. Cars and trucks were off the road on both sides. Firetrucks, police cars and ambulances lined the roadway. It was dark and hard to see exactly how many slide offs there were but I did see a pickup truck upside down in the median. I debated wether I should turn back and prayed aloud while crying my eyes out. It's kind of embarassing to admit that I was so freaked out but at the time... Fortunately, we are okay. The traffic was horrible as we passed "lake affect" city. It took me an hour longer to get to therapy today. I left really early so we ended up only being a half-hour late.

Crew has been a pill about the eating thing. I tried giving him his meds at therapy (in front of 4 therapists) and he spit them all over the place. Therapy has been extremely hard on him the past couple days. He has never been worked this hard before plus I know he doesn't feel his best. They push him until he collapses and then make him get up and do it again. There has been a lot of crying and I feel real bad. It's a battle I face... not knowing how hard to push. I want to stick it out though. I would hate it if we didn't finish and then all those years in the future wondering "what would have happened" if we had finished it.

I did take Crew to the pediatrician to get a good bill of health. He said he just might have some lingering achiness from the flu, plus he is getting a cold. He thought it would be best to continue with the intensive therapy. At least I know he doesn't have an infection or something.

When we got home today, the boys and I delivered flyers throughout the neighborhood reminding everyone about the "Scouting For Food" drive. Tomorrow night is the Pinewood Derby and I am going to miss it. I am staying in Orem at my uncles so we can save ourselves the commute. The derby really is more of a father/son event and this way Carl will be forced to take off work so he can take care of the boys and go to the derby. Dad and boys are still finishing their cars. I just hope S and H have a finished car by the time it starts. LOL.

Oh, and to top it off my eyelashes are falling out!!! I haven't changed my makeup or anything... anybody know why this could happen? Stress maybe? Dry weather?

Day 1- I CAN BE A SUPERHERO NOW

This is our first time trying the NeuroSuit. The suit frames the patient's body with bungee cords which provide compression. This compression increases awareness of how his body feels and moves. The movement Crew makes is resisted by the bungee cords which will hopefully increase his strength in a shorter period of time.

Watching him walk with the suit on I could see that he really had to work hard to move his legs. It reminded me of those days when we struggled to move pipe through fields of deep clay/mud. Every step took much effort as our feet felt glued to the ground. We were tough little farm kids and without a doubt our lifestyle contributed to that.

Crew works much harder than we did as kids. Every step takes effort as he works those muscles. It's hard to watch him struggle and the staff at "Now I Can" asked how often his older brothers help him. They are so good to pack him around, help him in/out of a chair, and get him what he needs. I haven't really spent a lot of time thinking that we are hurting him in the long run by doing these things for him. Still, its so hard to find the balance between making him "work" and taking care of his needs.

The PT evaluation went well. We've set some goals mostly centered on building strength and endurance and transitions.

Crew is struggling to eat which is an indication that he still is not feeling well. I can't help wondering if the timing of this is all wrong?

Intensive Therapy

The walker and DAFO's are packed and we are ready to embark on our 3 week therapy adventure. Five times a week for three weeks, 20 hours of commuting each week and 20 hours of therapy each week. Crew will get more hours of therapy in the next three weeks than he has in the last year. I have butterfly's in my stomach. It's a huge investment and I'm crossing my fingers that the flu bug will pass by morning.

I'm still worried that we will get there for the evaluation and be turned away for some unknown reason. Keep your fingers crossed for us:)

Just for Fun

I don't think I really needed to take the quiz to find out that my Christmas is most like this movie. LOL. Every year we watch this movie and I think it was last year S asked for a Red Ryder BB Gun. Despite my attempts to have a nice quiet holiday... the truth be told that we are actually a nutty bunch, extended family included:)

Your Christmas is Most Like: A Christmas Story

Loving, fun, and totally crazy. Don't shoot your eye out!

What Movie Is Your Christmas Most Like?

Reflections of Gratitude

I can't imagine what life would be like without my little family. These guys are everything to me. Each one with their own personality contributes something unique yet essential to our family. They teach me something everyday. I love them.

I found this last surviving daisy in my garden just this week which is really nothing short of a miracle. The temps here have been dipping below freezing. This daisy is a symbol to me of hope. Hope has become extremely important to me over the past few years. I am so thankful for believing that a positive outcome is possible even when there is some evidence to the contrary.

How grateful I am for my faith, good health, great friends and my country.

HAPPY THANKSGIVING TO ALL!

Twenty Two Cents

Okay, I'm 100% converted to LED lights now!!!

I checked my brothers math and plugged in my own numbers to see how much its costing me to power the Christmas lights that we have strung across the front of our house.

2.4 watts X 5 sets = 12 watts

12 watts X .001 = .012 kw

6 Hrs/night X .012 = .072 kw per night

.072 X 38 days (Thanksgiving weekend through New Years) = 2.736 total killowatts

2.736 X .08 (I pay 8 cents per killowatt) = .21888 cents

.2188 rounds up to 22 cents.

Yes, you heard that right. It will cost me TWENTY TWO CENTS to run my lights from Thanksgiving weekend until New Years.

Jeesh, I should get paid for this:)

Is this what Big Brothers are for???

Because I love my brother dearly and because he only comments privately I've decided to post his comment to my recent random post. Now you will understand why I am so strange:)

Introducing Guest blogger: Sam
Nice on the Christmas lights. I am actually a big advocate of supporting one of Wyoming ’s biggest resources, Coal. Most of the power plants in the country are fired by Coal, and thus I have decided to not only stick with the Christmas lights I already have, but in July at a garage sale I found a deal on more lights, you know still in the box never been used. I was able to pick up 11 sets (275 feet total) of the C-7 lights which are rated at 125 watts each set. With this in mind, if I plug all of the new lights in it will be an additional 1375 watts per hour which translates into 1.375 kw per hour. If I run the lights for 6 hrs per night (6X1.375kwh=8.25kwh) that will be an additional 8.25 kwh per night, and running the lights from the weekend before thanksgiving to new years that will be a total of 5 weeks or 35 days which in turn would equal (8.25kwhX 35 days = 288.75 kwh) an additional 288.75kwh. With my electricity costing about $0.08 per kwh ($0.08 X 288.75 = $23.10) I figure I will spend an extra $23.10 this year for my new lights. Good thing I only spent $5 for the whole lot.

As for old flames. I am glad it was nice to see him again. It is always interesting to run into those from a former life. Some are good to see, and others are good to not see. As for my wife, she doesn’t mind if I run into old flames… just as long as they don’t talk too much.

Regarding Thanksgiving plans. We have the same problem of commitment. Most likely thought, are lack of planning is what is screwing up your plans. Sorry!!!

The skiing sounds fun. Great family activity. Trying to find a deal on skis, or finding a deal on anything for that matter just runs in the genes (a blessing and a curse from our dear Grandpa A). I think you should just give up on buying the skis. Go for a snow board instead. Something I have wanted to try for years but just haven’t taken the time or gotten up the nerve. I could just see you tearing up the slopes and running circles around your boys, in a HOT PINK snowsuit and white fur hat.

Love those Crew smiles. It has got to be great to relish in those simple victories of finding something that he really enjoys and can develop doing.

Housekeeping/Blogroll

I realized that my blogroll needs to be updated. My sidebar only shows 1/3 of the blogs that I actually read. If I don't have you on my sidebar and you want to be linked up leave me a comment or email me (email addy is on my profile). Same goes for anyone that doesn't want to be linked and already is;)

Force Feeding Icecream

Napping is becoming quite hit-and-miss around here. When Crew gets off the bus he doesn't want to come in the house. Instead, he wants to practice "crewsin" around in his walker. At the end of the culdesac is a little mud puddle. I think he walked through it five or six times and still was not satisfied. I was okay with walking in circles really as my intention was to "wear him out" in hopes of driving him into exhaustion. He still needs a nap.... he just doesn't know it.

My efforts were in vain. He didn't sleep this afternoon and come bedtime he continued to fight it! Carl came home early tonight. I was reading with H and Crew was crying in his bed. Carl layed down with him for about 20 minutes and Crew finally fell asleep.

Not 5 minutes later I remembered that I had not given Crew his seizure meds. I usually give him the Depakoate mixed with yogurt or icecream at about 7 pm but occaisionally (about once every 6 months) I forget. So then we are left with the decision to leave him asleep and just give him his next scheduled dose in the morning or wake him up and give him the meds.

We chose to wake him up:) It really was a funny site... me holding the kid and prying his mouth open with my fingers, Carl with a spoonful of icecream forcing it into his mouth. Who does that?

Random Thoughts and WhatNots

Here are some random thoughts from one who loves random posts:)

1. This year we purchased new Christmas lights. DH is a big advocate of the energy efficient LED lights and so we never buy the cheap bulbs anymore. These new lights are suppose to be 98% more efficient. We were so excited about it! We hung them up and waited until dark to enjoy our Christmas display only to discover the lights aren't really that bright at all. Very dim. Big disappointment. Well duh, of course they're more efficient...

2. Last week I ran into an old boyfriend. Fourteen years ago our relationship ended on good terms. He broke off the relationship after it became clear that my parents had some "major issues" with us getting married. I was heartbroken and so was he but it just wasn't going to work out... It was really neat seeing him again. He just got married about 3 years ago. He is happily married and has an adorable little girl.

3. We still don't know where we're going for Thanksgiving. It doesn't bother me but I think it bothers the extended family. We don't really have the reputation for being big event planners. We kind of just go with the flow. It's probably rude not to make a commitment. What do you think?

4. The boys are all geared up for skiing this year. We found a place that rents the skis for the whole season. You take them home and keep them. Use them as much as you want and return them in April. We decided to take this route for S and H as they are growing so much. DH got all his ski gear new for his birthday. I'm the only one without the gear. I've been bidding for skis on Ebay for weeks but haven't been able to win anything yet. Tightwad!


5. I spent some time with Crew at preschool today. When I arrived he was playing with the Discovery Toys Zip Track Rally. He loves it! I am so excited about it and thrilled that I've finally found something he likes. I think I'll drop a note to Santa.

Saturday is a Special Day...

We've never had a November quite like this one. The weather was beautiful today. After basketball practices for S and H we hung our outdoor Christmas lights. It was so nice out and I really enjoy getting up on the roof. DH and I teamed up and so it didn't take long.

We decided to take advantage of what could be our last warm day this year and the fun autumn leaves. We took the boys to the park and messed around with the camera. DH doesn't usually take photos but he was helping me today. The camera is cheap and I think he realizes how frustrating it can be. Oh well, the photos aren't really so bad cuz my subjects are simply handsome:)

SELF CONTROL

I've never been one to really pass up those yummy treats that I love. I've never been one for diets or detoxing.

Yep, I'm far from the master of self control. One thing I do have going for me is that I'm relatively active. How can you not be when your packing around a 30lb boy all day?

Thanks to M&M I've decided to take her challenge of "Taking Control" and go on a SUGAR FAST from now until Thanksgiving. I'm on day two already and proud to say I haven't touched anything with sugar.

It's only two more weeks! Anybody want to join me???

Keyword Activity

Who ever knew that watching blog stats could be so exciting? I guess that tells you something about my life doesn't it! Hmpfh!

I love watching how you all find my site and seeing readers across the globe. Many of you read my blog everyday yet never comment or reveal yourselves.

Here are some of the google searches that have brought readers my way this past week:

What music do 5 and 6 year olds listen to
Courage does not always roar
A Penny Saved is a Penny Earned
Birth stories at Timp Hospital
got my DAFO
Quadruplets 3 girls one boy
Herrin Twins Mormon
Having 3 boys
No oxygen at birth
his casts
toddler ear dried blood
Dr Rehab

I would love to hear from more of you. Please comment and say Hi:)

H's Baptism

Yesterday H was baptized a member of The Church of Jesus Christ of Latter Day Saints. He has been anticipating this day for a long time and was so excited. Their were 13 kids baptized and the chapel and overflow section was filled.

H had lots of support from family and friends. After the baptism we were able to move into a separate room for the confirmation. As we were waiting for Carl and H to get dressed into dry clothes I had family members write their thoughts about the day on stationary so H will have something to remember how we all felt on this special occasion. Then he was also confirmed and received the Gift of the Holy Ghost.

Afterwards we all came over to the house for lunch. I love these little family get togethers. Two of my brothers and their families were there, my three sisters and kids, my three SIL's and children and grandparents from both sides. It makes for quite a houseful and I'm not really set up for that many people so I was so grateful that the weather was warm and the kids could go outside.

Last night we took the boys to FARR Icecream where we purchased 5 Quarts of one of our favorites, PLAYDOUGH Icecream. If you've never tried it I come on over I'm sure we have at least 4 quarts left;)

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.

One Year Older

All I want is for you to be HAPPY..... and not just because its your birthday.

Thanks for taking care of our family and for being patient with me, for listening to me ramble on and on about nothing and pretending that my feelings are valid.

You are far more skilled and knowledgeable in all aspects of life. I'm so glad the kids got their brains from you:)

You are blessed with a "hands on" ability to create, build, fix, and restore almost anything. Oh, don't get too excited about the hands on compliment. LOL.

If it wasn't for you I would have never enjoyed or learned the art of cooking, grilling or dutch ovening:)

You've shared your green thumb and inspired me to develop similar talents and a love of gardening. 'Cept I still want to fill the garden in with concrete. Tee he:)

I'll never forget this day. I'll never forget cooking Yakisoba and Wontons for 20 people. I'll never forget your dear sisters and mother slaving for hours on end and your support for my pathetic attempt at celebrating this day.

Thanks for pretending that my cooking skills are adequate.

Happy 34th.... I'll always be older than you:)

Peer Pressure

Finding motivation for Crew has always been a chore. There is only so much icecream and yogurt to go around, darn it. In the house, Crew uses crawling as his primary form of mobility. I've had a hard time using the walker with him in the house because I have to stay with him. I get discouraged thinking it is pointless because I end up doing the bulk of the work. But walking is good. Walking builds strength and the more practice the better but this little three year old has a mind of his own. The past few months he has decided he doesn't want to use the walker and so I've had a hard time motivating him.

However, today I was watching my nephew and we had a couple extra kids here as well. Crew was throwing one of his fits and I was trying to talk to my sister. I grabbed the walker and put him in it and he took off. He wanted to be with the other kiddos.... I can't blame him, old people are boring;) Of course I had to follow him and he was so motivated. He was walking just to walk, you know what I mean... he really had nowhere in particular to go:) I realized just how motivating his peers are.

I guess I should set up some playdates. Uggh!

KEEP BLOOMING!

It's always sad to say goodbye to summer. It's not that I don't love fall or winter but the autumn weather is short lived and the winters way to loooong!

It's hard to believe the flowers still look so great considering everything nearly froze last night. Luckily, "nearly froze" isn't the same as FROZEN. Maybe we can enjoy these creations for another week or two.

Like I've said before the Shasta Daisy is a favorite of mine. The yellow flower is called coreopsis or "tickseed". I love it too because it spreads like crazy and the blooming season here ranges from June until first frost.

It's inevitable that the flowers will fade and die out in the near future and we will look to spring for another display of beautiful blooms. Luckily we have the long winter months to continue to watch our little Crew grow and develop. I know in my heart that we will see him progress. Each day is an improvement and we continue to see his personality develop, grow and BLOOM. Happy Autumn to you all and for those bloggy friends on the other side of the globe... think of us during your sunnier days:)

Timpanogos Cave

It's been over 10 years since I've hiked to the cave and the first time with children of course. It's 3 1/2 miles round trip. The big boys did great! Crew was a good sport about being packed around in the backpack.

The weather was perfect and the leaves a brilliant display of reds and shades of orange. When we made the reservation we knew there was a chance of rain and contemplated cancelling. Luckily we made it to the cave without getting wet. After the 1/4 mile tour through the cave we exited and found a few random raindrops.




Hiking down was fun. We hustled back to the van as the rain picked up into refreshing sprinkles.






We just couldn't pass up the pic of Crew asleep in the backpack:)

Straight to the H-E-A-R-T

A blog post by Billie about her little chatterbox, Eden, has been playing through my mind today. Eden recieved her cochlear implant almost two years ago. Eden is an adorable little girl who has overcome many obstacles including the ability to communicate with her family. Today, Billie posted a sweet video of Eden speaking in her cute little voice saying, "I love you".

"I love you" is an expression we all need to hear. As the mother of a non-verbal child I'm not quite sure when or if I came to accept the fact that I may never hear those words. Because Crew does have some hearing, he is not a candidate for a cochlear implant. Crew shows his love in a million different ways.... with a smile, his hugs and quick forgiveness. Have I ever doubted his love for me? Of course not!

However, the hope and possibility that I may hear those precious words escape his mouth one day has been on my mind today. As I put Crew to bed tonight I looked at him and said, "I love you". We gazed at each other, I repeated the words, "I love you" six or seven times and just as I was about to turn away he distinctly crossed both hands over his heart and I knew without a doubt what he was saying, "I love you too"!

We have worked and worked on teaching him sign but I can honestly say that this "I love you" sign he learned from watching his Signing Time video. My heart is smiling now!

Managing Spasticity

We saw Dr. Rehab again this week for our four-month Botox followup. It's been frustrating because I didn't see any improvements with the Botox but did see some weakness following the injections. I've been saying again and again that Crew had a growth spurt over the summer so maybe the Botox combined with a huge growth spurt kind of just evened things out. At the Rehab clinic Crew was measured and weighed and much to my surprise he grew 4 inches!!!

The Dr. said that his bones are growing faster than we can stretch the muscles which is why he has been so tight.

Remember the criticism I recieved about family intervention... Well, duh, maybe his therapist should consider physical issues instead of immediately pointing the finger at his family and assuming we don't do anything.

Dr. Rehab wanted to do the Botox again but then we got talking about a possible Baclofen pump. Monday we will find out how long the wait is to get into the CP Clinic to do a "Baclofen Pump Trial". If they aren't booked out too far, we will wait on the Botox until we know if he is a candidate for a Baclofen Pump. The Baclofen pump is surgically placed in the childs abdomen where the pump sends baclofen (the drug used to lessen spasticity) into the area around the spinal cord. If he isn't a candidate we will do another series of Botox with serial casting.

Today we got our van out of the shop after a two-week wait. I've been sick since paying the bill ($2000.00) YIPES!

On a good note: I got my hair cut and colored today!

I Love My Little Peanuts!

What is it about Autumn that brings back fond memories of the Peanuts gang?




Back To School...

Football...

(yep, Number 7 belongs to me:)

Anticipation of "The Great Pumpkin"...

COMPOSITIONS...
(My little Shroeder:)

AUTUMN ISN'T SO BAD!!!