We have been having so much fun on our Montana road trip!....
We hung out with my brother's family last night. They made us a delicious meal! If they eat like that all the time, we're going to have to start coming up for visits more often! I mean it -- delish!....
They were soooo nice and put us up in one of their cabins at Hibernation Station. If you EVER go to West Yellowstone, you have to stay here. It rocks!....
This morning we woke up bright and early to head to our appointment for alternative therapy in Helena. We drove through some beautiful country and saw some wildlife....
We checked into a hotel and relaxed for a bit....
Then we headed to our appointment with Dan Nelson. WOW. If I get started, I won't stop. So far, I'm a believer. He worked on Chloe, my mother-in-law Tami and myself, spending over three hours with us, and wouldn't take a dime for his time. Just since our appointment, I have noticed Chloe using her hands more, trying to hold her body up more and being more verbal. I have a lot of faith and hope in what is to come. If you want more information on Dan and his techniques, you can go here or here. And of course I will keep you posted when we see improvements.
We took full advantage of the swimming pool at our hotel, which Chloe loved!....
We've still got two more days of road trippin' ahead! Hopefully everything goes as smoothly as it has so far and we keep having this much fun! Hope you all are having a great weekend as well :)
We got the results back from Chloe's stroke work-up genetic tests. They were all negative. She did not have a stroke in utero.
That's a positive thing, right?
I don't mean to be whiny, but I was a little disappointed. I wanted an answer. I wanted to know why Chloe has medical issues. I wanted to know for sure. I didn't want to keep wondering about it every day. If we knew that there was a genetic pre-cursor that caused her blood to have hypercoagulability, then I could stop blaming myself for maybe doing something wrong. AND the fix would be easy -- just take aspirin every day next time I'm pregnant.
Now we're back to square one with lots of questions and few answers.
I was feeling pretty negative about it all week, after getting the call last Friday. At the end of the day, though, it really is up to me if I keep feeling negative or I find the positive and focus on that.
Thankfully, I've been able to snap myself out of it and trust in the Lord. I know Chloe chose this life for herself and that she is a blessing to me. It is an honor to be her mother because she brings such a special spirit into our lives and is a constant reminder of what truly matters in life. I trust that the answers will come if we need them to progress. In the meantime, I have a renewed spirit to get Chloe progressing with her physical abilities. I think withdrawing from early intervention spurred me to take a greater responsibility. Instead of depending on the monthly visits, I'm doing more research, more exercises, more stretches, more swimming, more swinging, better eating habits, etc, etc. I also just have to remember that it is our LOVE that will truly help her succeed. Love NEVER fails.....
Although ABM would be my therapy of choice, I have decided to try another whirl at physical therapy, but this therapist is NDT certified (neuro development treatment) to work specifically with children who neurologic issues, such as cerebral palsy. We had our first visit this week, and are going to start going weekly....
She is such a cute lady and Chloe really likes her. I missed it by a millisecond, but she had Chloe sitting up without assistance for 10 second increments. Chloe was supporting herself with her arms and just loving it! I didn't even think to get my camera out because I was just enjoying watching her sooooo much! By the time I remembered to grab the camera and document Chloe's amazing achievement, she was tuckered out. You can kind of get the idea though!
We're also trying another alternative treatment. This weekend we're driving to see an astrophysicist in Montana, who tests energy fields around the body, then does something to correct the energy. He also developed a special water for NASA that he recommends, but doesn't require.
Now before you write me off as a complete lunatic for even considering this treatment, just know that I have met a young man with CP who could only roll over when he went to see this guy, then was sitting up three days later. It's now been six months and he's doing lots of amazing things, including standing without assistance and walking with assistance. If I hadn't met this boy and saw his dramatic improvement in person, I may not have believed it, so if you don't believe, I get it.
Also, the treatment is free if you can get to him. So I know he's not trying to scam us out of money. Basically, there's nothing to lose except a road trip to Montana.... and we get to see my brother's family, so we're truly out nothing! I'll let you know how it goes. I feel really positive about it, anyway.
Jack Higbee 1954 ~ 2010 Jack Dale Higbee, 55, passed away January 2, 2010 peacefully at his home in Salt Lake City, Utah. He was born in Salt Lake February 23, 1954. Jack married Sissy Bennett in 1982. Their marriage was later solemnized in the Salt Lake LDS Temple. He loved all children. Survived by his wife Sissy, children Ashle (Chris) Pachuilo, Brandon (Kallie) Higbee, Jason (Jamie) Jones and grandchildren; two brothers and one sister. A memorial service was held 12 Noon, Saturday, January 23, 2010 at the Rose Park 8th Ward Chapel, Salt Lake City, Utah. In lieu of flowers please contribute to the LDS missionary fund.
I might be weird, but I've always loved funerals and memorials. There is a lot of pain and sadness, and of course I don't like that part, but I love the silver lining -- that family and friends are gathered together to celebrate a person's life, that God's promises of heaven are held so dear, that angels are felt near, that everyone close to the person who passed away has a renewed perspective of what is truly important, and they want to live their life a little bit better so they can be with their loved one again and make them proud in the meantime. There is usually laughter through tears, and that is one of my favorite emotions. And somehow there is always a reminder of God's promises....
God never promised a life without pain, Laughter without tears or sun without rain. But He did promise strength for the day, Comfort for the tears and a light for the way. And for all who believe in His Heaven above He rewards their faith with His everlasting love.
It was wonderful this weekend being together with the family, even those we don't see often because they live far away. We truly celebrated Uncle Jack's life and enjoyed the many special memories we have of him. We laughed, we cried, we felt Jack near, and we cherished each other just a little bit more than usual, because we were reminded how precious life really is....
Chloe with her cousins from San Francisco, PJ & Henry
Chloe with her aunt Megan & Aunt Taylor (here from San Fran)
Ezekeil enjoying my high heels!
Chloe thinks pulling on womens' shirts is a sign of affection. Apparently she has a lot of affection for Aunt Megan & Auntie Emma (from Wisconsin)
Sera (from Denver), Taylor & Will (San Fran) and Megan
I was too busy enjoying their company to get pictures of everyone. There were also visitors from Washington and all over Utah. It was so good seeing them all and being able to honor Uncle Jack's memory by just being together.
We did a video after the memorial of everyone who was there sharing their favorite memory of Uncle Jack. It was so interesting to me that none of the memories seemed very "major." Everyone's favorite memories of Jack were the little things....
The passing of Uncle Jack and the memorial in his honor have brought to pass some of the most sacred experiences of my lifetime. I am grateful for his life and example of true joy and integrity, of overcoming trials and living life to the fullest. I'm grateful for the knowledge that he is in a better place and that we will see him again. I'm grateful for a family that really knows how to enjoy laughter through tears. I know we will continue to remember Uncle Jack, to commemorate his memory by trying to be a little more like him, and will always love and support his wife and children like he asked us to do.
It's been awhile since I flashed back, so I figured it was time!
Oby is supporting my weight-loss ambitions 100%, and has been dieting and exercising with me. He doesn't need to lose weight like I do, but he does want to get back into shape and get back into one of his hobbies....
Yep, he's a weight lifter, along with most of his family.
At one point, Oby held two state records for bench press and dead lift. In 2002, he was the world champion in his division.
Now whenever I need something heavy moved, I remind him that he can, after all, lift heavy things!
He'll probably kill me for posting these pictures, but it'll be worth it for me to be able to brag about my studly husband just a little bit!
Oby and I have a new church calling teaching the 8 & 9-year-olds in Primary. Aren't they cute!?!?....
I love this calling. I felt a quick connection with all of the kids. Each of them have such unique, sweet & funny personalities! Sydnei on the far left has this incessant giggle that would keep you laughing for days if you heard it. Mason on the far right is a 40-year-old trapped in a 9-year-old's body, and he cracks me up! They all LOVE Oby and call him 'Obi Wan Kenobi' (most kids do). This particular group is very interactive during lessons and it makes it so much fun to teach them, even though they're actually teaching us. :)
All I Need to Know I Learned in Primary
I am a Child of God. Believe in Christ. Do
unto others as you would have them do unto you. Choose the right. Where love is, there God is also. Cleanliness is next to Godliness. Forgive & Forget. Give oh give. Listen to the still small voice. Count your many blessings. Do the things the Lord Commands. Honor your father & mother. Dare to be true. Kindness begins with me. Families are forever. Search, ponder & pray. Listen to the prophet's voice. Jesus said love everyone. When you are helping you are happy. Heavenly Father hears & answers prayers. There is beauty all around. Reverently & quietly pray. Sunday is special. Do your duties with a heart full of song. My body is a temple. Heavenly Father Loves Me!!
My favorite part, though, is singing time. I think I actually might like it more than any of the kids! :)
This is the main song they're learning right now. It is so sweet that sometimes it makes me cry (just a little) as I watch and listen to the children sing it.....
Chloe, Oby and I have been doing "research" for the playground, getting ideas from local playgrounds and children museums. It hasn't been fun at all, just research, strictly business. ;o)
If you need to know why I hate SMA and want it to be forever abolished from existence, you can go here, here, here, here or here.
Between January 15th and January 22nd, Chase Community Giving is allowing supporters to determine which charity will be given $1 million to support their cause.
I am asking you to support the Gwendolyn Strong Foundation. Any money donated to that foundation will go to finding the cure to end SMA, Spinal Muscular Atrophy. Although there is currently no cure, research is getting close to finding treatment.
SMA -- Spinal Muscular Atrophy -- KILLS more young children than ANY other inherited disease -- 50% die by their 1st birthday, 90% by their 2nd.
1 in 40 people UNKNOWINGLY carries the SMA gene -- few have any known family history.
SMA is degenerative and terminal. Although born healthy, babies eventually lose the ability to walk, sit, eat, breathe, and even swallow. The mind is NEVER impacted and children with SMA are bright and social.
There is currently NO treatment and NO cure, but there is HOPE!
The National Institutes of Health (NIH) coined SMA as the disease "CLOSEST to TREATMENT".
Researchers say a CURE is possible in a few years -- IF given adequate funding.
SMA is considered a "model" disease and many scientist believe it is a "gateway" to answers for countless other diseases, including: ALS/Lou Gehrig's, spinal cord injury, Alzheimer's, Parkinson's, the muscular dystrophies, and even some forms of cancer.
PLEASE submit your vote this week by going HERE. If you would like more information or more ideas on how you can help, please go to Gwendolyn's blog HERE.
Chloe has such a special relationship with all of her grandparents. She is one lucky girl! Since two of my grandparents died before I was born and the other two grandparents had the affection of a shoe box, I'm a bit envious of the love she shares with her Papa's, Grammy & Nana. It makes me so happy to watch her with them!
Today, Papa stopped by for a surprise visit. We couldn't have been happier!
Chloe was happy because Papa sang some of their usual favorites....
Gully, Gully! Head of hair (touch head) Forehead bear (touch forehead) Eye winker (touch right eye) Tom tinker (touch left eye) Nose nobber (touch nose) Mouth eater (touch mouth) Chin chomper (touch chin) (pause) gully gully gully gully ….. (while tickling neck) (it goes something like that, anyway!)
The Old Bumble Bee
There was an old bumble bee who lived in a barn (while making a circle and coming closer to her face) He carried the music (still circling and coming closer) Under his arms! (tickling under the arms, followed by squeals of delight)
Family Folk Song
(This is a Taylor/Bennett family tradition. I don't know the origin or understand the words, but it's a big hit with the kids!) I saw the train go 'round the bend Goodbye, my lover, goodbye 'Twas loaded down with China men Goodbye, my lover, goodbye Bye baby bunting Daddy's gone a hunting To get a little rabbit's skin To wrap his baby bunting in
I was glad Papa stopped by because he helped us pass the 4-hour fasting period Chloe had today before she had the stroke blood work done. Grammy was also a HUGE help, and I'm grateful for them both! Chloe is not happy when she can't eat (and I can't blame her). We'll get the results in a week (which means at least two weeks). I'll keep you posted when I hear.
Speaking of special loves, I have a special love for Lauren Graham after her stellar performances on Gilmore Girls. I also have a special love for Ron Howard due to his roles as producer and narrator on my all-time favorite show, Arrested Development. Bring the two together, and voila! you have Parenthood. It premieres March 1st and if my DVR went ahead that far, it would already be set to record this show that I'm destined to love....
Have I ever told you that Chloe is a dancer in my dreams? Ever since I was pregnant with her, in my dreams, she has been a beautiful dancer... long and lean and very beautiful (of course). Those dreams are only one reason I will never give up on her physical abilities. In my head & in my heart, I know she will one day dance. This is also one of the reasons I love this song by EastMountainSouth (sorry the video is a One Tree Hill montage, it was the only video with this song I could find!)....
Now it's easy to see why we love the book, Ballerina Dreams. It's a true story of three young girls with Cerebral Palsy who learn to dance.....
They were soooo nice and put us up in one of their cabins at Hibernation Station. If you EVER go to West Yellowstone, you have to stay here. It rocks!....
