Major Life Changes - Tammy's Story

Hello everyone! Most of you that are on facebook know why I have not blogged in a long time. Some of you however, may not know. I suggest that you sit down if you are not already sitting. To make a very long dreary story short, on March 13th I will be the proud (right?) owner of a new 2009 titanium hip. Unfortunately it only comes in one color and to get it i will have a 6 to 8 inch slice along my leg. But don't worry, the doc says I'll be walking again in no time!!! LOLOLOL

Quick side story...I have a favorite pharmacist that we've known for two and a half years. He's a great guy, he really knows his patients very well and cares tremendously. Well, yesterday Dustin went to get some new prescription filled for me and the guy asked Dustin "So will she be able to walk after the surgery?" OK, when I heard this I thought is this really the guy that is making my drugs for me?? LOL! No he really is a nice guy though, but I will be double checking the pills against pictures of the correct pills on the internet from now on.

So when did this all begin? I have known this or something like it would happen because of the way that I sit and crawl. When I was younger, Physical Therapists would say "You know, if you sit like that, you're going to have major hip problems when you're older". I was 5-9 years old when I was hearing this - who cares?! Sitting in "W-Sit" and "Knee Walking" was how I could function the most. I figured I'd be 60+ when my hip went out. A couple of years ago, I began having a difficult time - post kids - with my hip. It wasn't anything too severe, just a little bit achy. I noticed it especially when I tried to crawl stairs at friend's houses. It gradually worsened and this past Summer, I stopped being able to do the machines at the gym. December, it was straight down hill. The pain is really astonishing.

Last April I tried to get my Boulder PCP to help me, it was the first time I ever really sought help for pain. Basically I was disregarded after no major findings were determined by a basic X-ray. What I needed was an MRI, but the doc was not concerned and did not order one. So this past September I went to a different doc in Boulder - same practice - and it took three and a half months to get the MRI that I needed. In the mean time I would crawl and my hip would give out and I'd fall over in agony. My doctor's office could not seem to get the MRI results. In fact, I went to her one visit for the sole purpose of getting the results. And she made up excuse after excuse as to why she could not get it.

On January 8th I fell over and could not move my leg for quite some time. The pain was just unbelievable. I thought I broke my hip. Dustin once again called the doc and left an angry message on her machine to get back to us. The next day he decided to just call the MRI department and find out why we couldn't get the results. It turned out all we had to do was ask for them, which my doctor never did. The results were faxed directly to us within 20 minutes of the call. Words like "tear" "displaysia" "detachment" "cysts" and "osteoarthrosis" seemed to fill up the entire page. Now picture it...we were here in our living room reading all this stuff. We had no idea what a lot of it means. Dustin called my doctor and left a very brash message saying that we indeed got the results on our own and the least she could do is go over them with us. Its been one month since that day and we have not heard a word from them. That afternoon Dustin and I had decided we needed to find a higher power. We managed to get a sick visit at a clinic through the University of Colorado in Denver. During that appointment we heard the words Hip Replacement for the first time.

We are bitter because if I would have received proper care from the Boulder health system I would already have a new hip and the pain would have never had gotten this severe. If there is one good thing to come out of this whole disaster its that we have finally found quality health care for both myself and the children. Unfortunately its all in Denver. I have a great doctor now! I have a great orthopedic surgeon now! And I feel better about my longevity! The kids are now in the Children's Hospital system after some major blunders by Boulder's ER. They have a wonderful pediatrician now.

When I go to these new doctors and compare them to what we have been dealing with for the past two and a half years it actually scares me! People like me and my family who are on Medicaid can get such poor treatment from the broken system. Many people on Medicaid would not have the choice to go to Denver for medical care. We are fortunate to have the resources necessary to travel. Even sadder is the fact that in the past three weeks we have come to find so many parents that are in the same boat that take their kids 25 minutes away to the Children's Urgent Care North Campus rather than 5 minutes to the Boulder Hospital ER. I should mention here that Destiny had a couple seizures two weeks ago and Boulder ER overdosed her and misinformed us. Luckily, Dustin initiated taking Destiny to Children's 6 days later and she is now recovered.

I have not crawled since January 9th and I will never crawl again. This is probably the biggest life-style change I have ever gone through even more so than becoming a mother. For those of you that know me in my home-life you understand...my entire world has been on the ground, all my life. Its depressing. The first week after learning that my only option is definitely total hip replacement was really tough on me and on Dustin. It didn't help that I was taking Valium as a muscle relaxant, but it is actually a depressant. Since then I have been reaching out. I found a very supportive "Hippy Support Group" and have been communicating with a lot of various people. One of the most difficult things for me in the beginning was that I thought that only older people (70+ - no offense!) had hip replacements. Well I found many many many young people that I can relate to that have gone through THR! This has been an awesome boost for me. I mean OK, I'm sorry that they're also having this happen to them, but its nice to know about it.

Soooooooooooooo we have a lot of work to do. Not only to prepare for major surgery and home rehab, but we need a new house! Right now my attendants and Dustin are pushing me around my house in my manual chair. Just another strike against my independence. Its hard on them and me. We moved our bedroom from the garage to the guest room. We have a king + sized tempurpedic adjustable bed that takes up most of our bedroom. It is a cute little bedroom. I lay in bed and I see a huge a tree out my window, but it is really small. I want my independence, whatever that will mean living my home life in a chair. It will all come it's just going to take some time. But patients is not one of my virtues. We are looking for a place that can house live-in attendants too. So that's exciting!

Many of you know that I type sitting on the floor. Well, that's over. Right now I can't type. However, in a couple weeks I will be getting an AT (Assistive Technology) evaluation and I will be geared up with some high tech equipment that will enable me to once again use the computer independently. Several people have suggested Naturally Speaking. Let the record show that Naturally Speaking doesn't speak CP!!! Check out www.eyegaze.com this is the more probable rout I will be taking.

I am leaving my pictures and graphics out of this email because right now I don't feel like teaching my wonderful typist how to insert those things. But I promise my next blog will be focused on the kids and their activities and it will be filled with pictures! Look for it next week ; )

This is where I will close...I miss you all!!! I'm sending my love your way and please send best wishes our way.

Oh and by the way, Boulder Colorado still rocks! We love this place! We only hate the medical care - that's all. Oh good news flash! Benny was accepted into the only Charter School in Boulder. Its a kids motivated school, K - 8. We are very excited about this!

Love you all,
Tammy

Graduation: Bringing People Together - The Tribute

This past week has been one of the greatest in my life. Approaching commencement, I grew increasingly nervous about being the center of attention. I am a person who loves recognition for the accomplishments I produce - period. For the past four years, most major events have centered around the kiddos. I continually pull the masses together to celebrate them.

I have obviously graduated from various scholastic accomplishments before - though the entire concept was an obscure symbol which meant little to nothing to me. I guess I just don't get the ritualistic phenomenon. I swear I was not born a hippy - it just came naturally with age.

After reading this, perhaps my irreverant graduation announcement is begginning to make a little more sense. For the record:

*I am not a Catholic Sister (by any means!)

*I am not Catholic (by any means!)

*I am not Pregnant (that's a PROMISE!)

I attended Regis, a Jesuit Catholic University, because the College for Professional Studies appealed to me. I would not have suffered through traditional college as a mom - I just would have never done it if I had to attend classes everyday and sit with a bunch of little rich kids concerned about their nights being wild enough. Gosh, I feel ancient! So CPS gave me a fast-track, and allowed me to be home with my family, only attending class 1-2 evenings a week. Granted, each course required 20-35 hours of homework per week, but at least I was home.

Alas! I DID IT!!!!!!!!!!!!!!! And, as funny as it is to say...I'm proud of myself!

I decided to do the whole "walking" ;-) thing because this is IT! I worked incredibly hard to accomplish this degree, and I have absolutely no desire to continue my education formally.

Still, I struggled with the ritualistic aspect of commencement, clear up to two days prior to the ceremony. My dear friend, Lori, occasionally much wiser than I ;-*, laid it out like this: The ceremony is just that, a ritual. The wonderful thing about ritual is that it brings people who love you together. I thought about this, and yes, indeed some of my dearest and truest friends were traveling, not to watch me take the diploma cover from Father President (and drop the damn thing!), but to share in my pride, and show their love for me.

IT WAS WONDERFUL!!!!!!!!!!! SOOOOOO WONDERFUL TO HAVE SO MANY OF MY FAVORITE PEOPLE TOGETHER AT ONCE - at the same dinner table even!

Meet Lowell and Julie

Lowell points out my name on the graduation program!
These two youngsters have been in my life longer than anyone at my festivities! Lowell was my independent living instructor when I transitioned from nursing home to independence in January 1998. His grooviness kept me outta a lotta trouble, and he and his vibrant wife, Julie, kinda took me under their wing until I fled for Big Sky Montana. As I left, Lowell said, "You'll be back. I bet'cha within ten years!" A wise hippy he is! Seven years! - Frew, glad I fullfilled his prediction! I came back as a team of five (Sophie included), and Julie and Lowell are a part of our daily lives! My favorite thing about them is they have a crazy ability to love without passing judgement!

Meet Dustin and Tammy

Met in 1999, married in 2003, and still best friends today :-) Need I say more?!

Meet Lori

Ms. Lori is one of my bestest friends. We met in 2001 while serving as Americorps*VISTAs at the Disabled Rights Action Committee. Probably unlikely friends, I am a strict soldier; Lori's a very resistent soldier, A.K.A. Rebel! LOL! At one point, I was even her supervisor...we have been through a lot together! Our relationship blossomed post DRACian-era, as I began to settle as wife and mommy. I can't imagine my life without this Buffy-lover (yuck!) now! I love Slayermouse to death, and Lori is part of our family. Technically she lives in Salt Lake, but she does have her own room in our home!

Meet Chantee

It was love at first bath! We met in 2002, she was a CNA for a Home Health company, and I stole her away. Chan was my lesbian lover (LOLOL inside joke!), best friend, roomy, assistant, maid of honor, birthing assistant, and my accomplice (according to her ever-so-worried Mother!). Some of my fondest memories include Chantee, as well as some of my most disgusting memories (I'm soooooo sorry I looked like a dying green whale at your wedding!) I dumped Chan for Dustin, and she then dumped me and Dustin for a guy name "Pugsley" Pugh ;-).
Bottom Line: I love this Chica, and if Dustin and I croak, she is the Baby Mama of our children.
It has been very hard, at least on me, being so far away from her. One of the three highlights of my grad weekend was we got alone time! We are still lesbian lovers!

Meet Grandpa Cutler

What do you say about a dude like Grandpa Cutler?! I met him in 2002 - he was the Bishop of an LDS ward for Single Young Adults. His unconditional love for me and my family makes him Grandpa Cutler. He, his wife, and his family adopted me and each new member of my family. I love being around him, and wish we could be around him more - he just makes us feel good! It's funny, you might think he's some kind of strict old judgemental fogie because he is a Bishop, but we know otherwise. He's pretty darn hip, and we love him.

Meet Grandma Cutler Not the best picture of her (again!), Grandma Cutler is a one of a kind lady that everyone just wants to know! We love her so much, and she is a hoot. She can be so silly, and has made me almost wet my pants many times! I guess because you don't neccessarily expect her to mistake baby poo for spilt chocolate and eat it, etc, etc. I'm laughing so hard right now as I type this! I'm sorry!! LOLOL!
The Cutlers were another highlight of my weekend...They were flying in from Vegas the morning of my graduation, got snowed in at SLC airport, and after several hours waiting, flew into Denver. They missed me getting my empty diploma cover, but they were there to give me huge hugs when it was all over! They came for me - that's all I cared about! The following night, when getting together didn't work out, Benny was devastated...That touched my heart. :-( But we will see them soon!

And last but certainly not least...
Meet Kim A.K.A. "Mee-maw"Though it definitely felt like I knew this lady since I met Chan, I honestly don't remember really meeting Kim until June, 2003, at our open house (wedding), held in her backyard, which she threw! I kid you not! Chan convinced her mom to throw the event for us because we moved our wedding up a month, and lost our original venue. This is hilarious because I was under the impression that Kim thought I was the Crip Devil - enticing her daughter to be crazy, leave home (to our apartment!) and travel! When I got knocked up, Kim and I fell in love (huuuge love triangle! ;-) and Kim transformed into Mee-Maw, adopting our family. Mee-Maw is the grandma my kids know most intimately - meaning it's much more real to them than not. Mee-Maw tended both kids regularly, but especially Benny, as a grandmother. She loves to spoil them, and hates to return them (usually!). "Mee-Maw lives over the mountain," and our lives seem to revolve around the kids visiting Mee-Maw. Mee-Maw this, Mee-Maw that.......WE LOVE THAT MEE-MAW! And she loves us enough to get on the dang plane, fly over those big mountains just to see us! Someday she might even forgive me for leaving "the Great Valley"! ;-)We sure miss her!!!

I had a bowling party; it was freeeeeeeeeeezing, the roads were icey and it was just a miserable day to leave the house. Notwithstanding, all of us that were able to make it to the party, had a blast! My children are natural bowlers; we are definitely destined to be a bowling family! Destiny bowled a 92 and an 104, with Benny not too far behind! Benny started our rolling the ball, then he advanced to throwing it like everyone else.

I must say, the thing that truly made the bowling party for me was the arrival of two of my closest friends, Robin and Laura. I was so sure that they wouldn't be able to come because of the awful ice. BUT THEY CAME!!!!!! and it meant sooooooooooooooooooooo soooooooooooooooo much to me!!!!!!!!!!!! Unfortunately, I have no pic to post LOL!

So many friends sent their blessings to me, and I do declare to have the greatest friends on earth!

Here is a complete album from the weekend...

Graduation Weekend

On the Court

After a long silence, The Life and Times of a Mom On WheelZ is ressurected! I have much to say in the coming weeks, but today, I wish to pay tribute the GREATEST SPORT OF ALL TIME - the one, the only

POWER SOCCER!
We are the

Some of us have been kickin' balls since September; others joined the team more recently. We all love the sport and are commited to the team.

Check out these clips from our latest practice...

(This is my favorite Scrimmage clip because the ball is in play for so long, and every player touched the ball)

(Coach Ashley gives us the station scoop)

Coordinating Power Soccer has been very different than any other organizing I have ever done. The only support we get is some advertising and free gym time through Boulder Parks and Rec. Considering the cost of one hour of gym time averages $80-$120, this is something to be grateful for! The problem is getting consistent gym time. The courts at Boulder's Rec Center are like merchandise on Black Friday. Ideally Power Soccer teams practice on a weekly basis from 2-3 hours per session. A consistent schedule (day and times) is very helpful to the development and ongoing success of any team. We have practiced twice a month since September, but have no dates in January, and two weekdays in February. Weekend practice time in the late morning or afternoon is generally best for power soccer athletes. This accommodates athletes with jobs, long attendant routines and/or extended travel time, and so allows for the greatest potential numbers to participate. I have spent hours and hours and more hours approaching gyms in the Denver Metro area only to get thoroughly frustrated, and discouraged.

LET FACE IT - I am not the stereotypical athlete - even disabled athlete. City adaptive rec directors think I'm crazy - period. I have been blatantly disregarded, and lied to in numerous instances. One person even went out of her way to hide from me - kinda hillariously. It's been reeeaaal fun! ;-) Imagine if I was asking for a free gym! LOLOL I'm not! I can only assume these folks think I lead a very boring life to be making this stuff up!

To rent a school gym, there must be a student on the team, but it's outragiously expensive...

I laugh because going into this, I expected our biggest challenge to be getting and maintaining the equipment. We are verrrrrry lucky to have a volunteer engineer who can do magic in record time - he's unbelievable! I have footguards coming out my ears.

We have terrific coaches and volunteers!

Colorado ROCKETS totally ROCK!

The whole team is working on getting a gym now...WE WILL GET A GYM!

Over 45 teams in the US have made it work. We can too!

Baaaaaaack!

Hellooooooooo! I am alive! This is my first work of substance since being down for the count, so it should be interesting. My thoughts and feelings are scattered today as I proceed to re-group.

Yesterday I thanked my new nurse practitioner for probably saving my life last Friday. But, today I thank my very funny Robin-friend (LOLOL)for caring enough to force me to think about my health. She nags like crazy...Her nagging forced me to make the doctors appointment. Good thing because one hour before the appointment, my oxygen level dropped. It was scary, and I am one lucky Radical Mom On WheelZ!

I must laugh as I reflect on what a big deal I was at the hospital. We love Boulder, but I do think I will look into Denver for health care. A little confidence from the providers is comforting to the patient...They were either going to pic line me or send me home. LOL I opted for home. Monday I did wonder if I made the right decision, but now I'm sure I did. Every day gets a little easier.

I was devastated to miss Halloween with my kids, I'm still sad, but I am thrilled that they had a blast! Check out the album........

OCTOBER 08

Julie, Bonnie and Lowell took great care of the kids, so that Dustin could stay with me all fifty hours at the hospital.

Luckily, by Friday the kid's antibiotics had them feeling a ton better, and they got a good night's sleep.

Many friends are asking about graduation...I am still rolling at commencement on December 13th, but I'll finish my final class during the first eight weeks of Spring. It sucks for us, but the hospital refused to release me to go to class :-)~ Just kidding! The program that I'm in, because it is a crash program, is very strict and the professor dropped me when I did not show. I'm okay with it - I need a break, and the professor was rude to me anyway.

With Benny back in school, and me stuck on my caboose, Desty is getting loads of motherly attention.....LOLOL POOR GIRL! We had a Princess morning, and I'm ready to get her an agent!

Regarding the election, I will leave it at:

We shall NOT be McFrozen!

Stayin' Alive

The title says it all...We are sickos, have been for three + weeks. It began with Benny - LOL - everything begins with our boy, doesn't it?! Ugh...His annual seven month hack has returned. But, because of this, a three year mystery has been solved....Benny is not just a really baaaaaaaaaad sleeper! He has aggressive night terrors, coupled by nocturnal "seizure-like"activity. Frew.....When he is sick, his sleep problems are frequent and intensified. The good news is now we know how to help him, and us, to get through it. He will grow out of it.

The hack continues. He coughs so hard he vomits. Put night terrors (where we're not supposed to wake him up) with a violent cough and it spells:

HELL

But that's just the brink of it.

Then mommy breaks out in hives, and is rushed to the ER for a magic shot. Cause unknown.

A few days later, add a fever to Benny's cough.

The following night Desty breaks out in hives and visits the ER. Cause unknown.

The next day, Desty appeared fine. Just before 7p.m. my baby girl collapsed into her daddy's arms and had a seizure for five + minutes, and forty minute recovery. As the medics were prepping to take Desty to the ER, Benny was barfing all over the neighbor. Dustin went in the ambulance; I chased behind in my wheelchair. The ER chalked it up to a febrile seizure and released her. Since then, her fever has been on and off, she now has a bad cough, and now we are all sickos.

Finally, a nurse practitioner listened to us yesterday and now both kids are on antibiotics, and Desty has a referral to a neurologist, because, in her opinion, Desty's seizure lasted too long to be a typical febrile seizure. In my opinion, Benny has needed a neuro for a long time....Think Benny could be passed off as Desty's conjoined twin? no, probably not!

While all of this was happening, we discovered a poisonous plant, Mertle Spurge, all over our yard.

It has been wild at the Burton house! Desty's 3rd birthday celebration has been posponed until we are up to partying. Hopefully, we will be able to enjoy Halloween.

We are going to have the cleanest carpets, as we invested in our own Carpet Shampooer, just in case something is being tracked in.

And last but not least, we are investing in a lifestyle change:

GOODBYE HARSH CHEMICALS, HELLO NATURAL PRODUCTS!

It's not a big deal; i.e. the baby bath and bubbles are heavenly soft, the oatmeal soap is glorious and we looooooove Mari, my dear friend, and Mari's Magic butter salve. We will work on the food when they make a natural Dr. Pepper that tastes like the real thing! ;-)

The Bee Gees come to mind of late.........

The Many Colors of the Colorado Rockets

INTRODUCING...
...a great opportunity to support a DYNOMITE new team, an inspirational and aspiring artist, and to get a headstart on your Christmas shopping for as little as $20.00! It couldn't be simpler!

PURCHASE Kane's ARTWORK to support POWER SOCCER in COLORADO! Kane, a local artist and Colorado Rockets player, is generously donating 100% of all art sales for the next 30 or so days to the Colorado Rockets. Order an 8 X 10 print or a box of cards from the web (mention POWER SOCCER in Comments during check-out) or order directly from me.

If you purchase directly from me, it will be discounted...

My prices (shipping donated by myself):
A package of ten cards is $30 (on the web $40 + shipping)
8 X 10 print is $20 (on the web $25 + shipping)

If every one of my readers were to buy one 8 X 10, the Rockets would make $2,100!

5...4...3...2...1...

BLAST-OFF!!! GO ROCKETS!!!

We Looooooove Sunflower Preschool

Where's Benny?!

In the YELLOW and BLACK jacket in front of the trailer!

Today was Benny's first field-trip - EVER! Sunflower Preschool went to Munson's Farm for a fun-filled morning of hay rides, pumpkin picking and a picnic. While we did not volunteer as a driver, we were not gonna miss out. AND though Desty couldn't go on the hay ride, she did get the wildest mommy ride of her life as we followed behind it!

LOL Benny started at Sunflower Preschool in August and I do believe --> 'tiz the PERFECT fit! Benny is having so much fuuuuun and learning and growing, and he loves all his teachers, too. The curriculum never ceases to amaze me! The teachers are great with Benny, and all communicate very well with me, which is definitely key. Benny does struggle - he's quite the 'Big Boss Man' at Sunflower - but the teachers deal with it appropriately and continue to nurture him and seem to really enjoy him. And frequent reports confirm that he's improving in the bossy pants area.

My Facebook update reads: Tammy LOOOOVES Sunflower Preschool and is fighting urges to poo bomb Benny's old nazi preschool.

LOLOL Sorry, I am mad that it seems we get what we pay for in education. Even if Benny actually had a great teacher last year, the difference between a public school environment versus private is disgusting. Vote major school reform! Kids are worth it!

I'm just sooooooo...
RELIEVED
RELIEVED
RELIEVED
to have found Sunflower!

:-) Tonight at dinner, Benny said, "Mom and Dad, remember when we went to the cemetary in Washington DC? When can we go back and see the dead people again?"