Friday, December 28, 2007
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.
Monday, December 24, 2007
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:)
Saturday, December 22, 2007
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.
Monday, December 17, 2007
Thursday, December 13, 2007
Wednesday, December 12, 2007
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:)
Monday, December 10, 2007
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!
Friday, December 07, 2007
Monday, December 03, 2007
Wednesday, November 28, 2007
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?
Monday, November 26, 2007
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?
Sunday, November 25, 2007
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:)
Saturday, November 24, 2007
Your Christmas is Most Like: A Christmas Story
Loving, fun, and totally crazy.
Don't shoot your eye out!
Wednesday, November 21, 2007
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!
Sunday, November 18, 2007
Jeesh, I should get paid for this:)
Friday, November 16, 2007
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.
Thursday, November 15, 2007
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?
Tuesday, November 13, 2007
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, November 10, 2007
Thursday, November 08, 2007
Monday, November 05, 2007
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
toddler ear dried blood
I would love to hear from more of you. Please comment and say Hi:)
Sunday, November 04, 2007
Monday, October 29, 2007
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;)
Thursday, October 25, 2007
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?
Wednesday, October 24, 2007
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.
Monday, October 22, 2007
Friday, October 19, 2007
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*
Tuesday, October 09, 2007
Thursday, October 04, 2007
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:)
Wednesday, October 03, 2007
Sunday, September 30, 2007
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:)
Friday, September 28, 2007
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!
Monday, September 24, 2007
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:)
Sunday, September 23, 2007
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:)
Thursday, September 20, 2007
"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!
Thursday, September 13, 2007
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!
Monday, September 10, 2007
Back To School...
(yep, Number 7 belongs to me:)
Anticipation of "The Great Pumpkin"...