A Princess on Steroids and Personal Assistant Enterprise

Desty's fine now. Desty (in all her 24lbs!) got her steroids on Tuesday, every 3 hours. We switched to the doctor that treated her last time, so he knew what worked, etc. Last time it took almost an entire day to find something she would respond to. Dr. Fries is concerned because it's summertime, and very rare to get it in the summer. He's sure she'll get it again in the fall, etc. (We have refills...) Then he tells me to bring her in if it gets worse that night like in February...that he life flighted a 5 yr old to Children's because of Croup like hers recently because they couldn't get an airway. LOL That's all I needed to hear! NOT!!! I always thought Croup was no biggie...

I'm just relieved and relieved and relieved more, that we made it to the doctor's office. I'm going back to inquire further about allergies and asthma. I'm not particularly happy that my 2.75 year old needs steroids...

-------------------

I am hiring a Personal Care Assistant, and for the first time in ten years of directing my own care, all the interviewees have been promising! This is unreal!!!!!!!

Okay, I did have one gal set an interview and then e-mailed...

"Did I mention that I will only be here until August 7th?"

Sorry, but DUH!!!! By the time we do the background check, and all the paperwork, it will be August 6th. At least she e-mailed instead of coming and wasting everyone's time. A pet peeve I have is when the opening is for i.e. 7-11a.m. and at the end of the interview, they say, "Now, I would love this job, but I have a scheduling conflict and wouldn't be available until 9a.m., but I can work all afternoon."

So I have an unprecedented problem! :-) Usually, the decision who to hire is very clear-cut - usually ~1/4 of the candidates would fit. This is actually a wonderful problem to have! I wish I could send some of these interviewees down to my friends in Englewood, who have had the worst experience this summer finding interviewees. College towns are always easier to find candidates.

Croup Hits Again

About two hours ago, Desty awoke crying. Dustin brought her into me and I heard it...the freaking dreaded seal cough and stridor. "Oh God!", I thought, "What did we do to deserve this?!" Really, most kids get croup and it's nothing to worry about. When my daughter gets it, because she's so teeny, it typically means four hours in the ER or, last time it was a 32-hour hospitalization.

So I sit here, writing this blog, while Dustin sleeps with Desty, his cell phone in hand, and our home phone 2 feet from me, wondering how I'm ever going to be able to do the nine interviews I have scheduled for today and tomorrow for my Personal Assistant Enterprise. The pediatrician's office opens in three hours. This is like the old Mervyns commercials with the crowd waiting to rush in. This time I want to take her to the doctor's office, instead of the ER.

-----
A Trip Down Trauma Lane, Plus Tammy's SoapBox #43

On February 27th Benny was getting sick. We thought it was just another cold - it wasn't even bad for once. Miracle or mother's intuition, after getting finished with homework at ~2:30a.m. I decided to lie down in his room. Benny was thrilled, and jabbered on and off for half an hour. He was teasing me three minutes before having a febrile seizure, then becoming unconscious. When his seizure began, I screamed for Dustin, who arrived to work with Benny to ensure breathing and try to alert him. I was charged with going to the other end of the house to call 911. Now, I have a LifeLine medical alert system, but in January the company “upgraded” all units to a device that is inaccessible to me. I unsuccessfully tried to activate it. I then grabbed my cell phone and dialed 911. I obviously have a speech impairment and, complicating matters, I was absolutely stricken with panic. Though I have never called 911 before, I was sure the dispatcher automatically had my address (E-911) and immediately dispatched an ambulance. I repeated, “We need help now! My son had a seizure and we need help now!…” I eventually came to realize that the dispatcher did not have my address. Frantic and frustrated, it took eight more minutes for my address to be understood. We were lucky - the dispatcher was very patient and worked with me to get it correctly, and though we did not know, it was not an immediate life or death emergency. He was finally taken by ambulance to the hospital and diagnosed with a potentially fatal strand of influenza A.

On February 28th Destiny was rushed to the hospital and admitted for 32 hours with severe croup.

Influenza and croup are unrelated.......when it rains, it pours.

One thing I learned, and want to share with my friends and everyone, is the importance of having a land line for emergency calls. I called 911 on my cell phone for Benny, the operator couldn't understand our address, and it could not be traced. I rarely use my land line, and of course, it never occurred to me in the heat of the emergency. Many people only have cells. I now am an advocate for land lines!

• Cell phones save lives. If a cell phone is the only phone around, use it.
• If there is a wireline phone where you are, choose to call 911 from it, instead of a cell phone. Addresses are traceable from most wirelines, NOT necessarily cell phones at this time! (Read about what the FCC is requiring cell phone providers to do at Wireless 911 Services.)

-------
Yes, my LifeLine is accessible now.......

Destiny's Toes

This is a reinactment of the show Desty put on at Chuck E Cheese's on Sunday (ignore the screaming boys in the background!) From what I gather, she plopped down between the games and began her act. Julie called me over, and there was a moment I couldn't believe my eyes...Destiny had drawn a small crowd of fans, and was so focused and flawless (she wasn't using her hands to hold the cup!)

LOL If we ever again get too hard up on money, we can go down to Pearl Street Mall and she can compete with the great Boulder Buskers!

COMING SOON...My baby is 4!

The Sound of.......Notes? and Other Musical Ramblings

We got a steal today! We bought the floor model of a Yamaha YPG625 digi grand piano, and the owner slashed the price MUCH further because "I have the power!"... Yes! You da man!! He was truly a nice person, not just out for $$.

This baby is award-winning, and now WE OWN IT!!!!!!!!!!! :-) :-) :-)

We have all taken turns playing. I taught Dustin the only song I know, Mary Had A Little Lamb, and he's trying to teach himself Row, Row, Row Your Boat. Benny comes to me every 30 minutes or so and asks to play. To play, the kids must ask me or Dustin, go wash and dry their paws, come get a dry check from a parent, then finally they can play the "piano". Benny is actually calm on it, and there are moments I think "What a beautiful song!" He has been using both paws, one key at a time. He is also practicing notes and counts. Desty is not amused, thus far, because we won't let her pound it to pieces. Poor kid!

-------------------------
Tammy's Musical Ramblings

If you play the piano, don't call, just come visit us!! I will personally roll out the red carpet from the front door straight to the instrument in subject! ;-)

I'm craving to hear my favorites: Phantom of the Opera and most selections from Les Miserables..........My Goodness! The gut-wrenching, soul-stirring lyrics created by this story take me to a magical place, a sacred place in this world.

There was a time when men were kind
When their voices were soft
And their words inviting
There was a time when love was blind
And the world was a song
And the song was exciting
There was a time
Then it all went wrong

I dreamed a dream in time gone by
When hope was high
And life worth living
I dreamed that love would never die
I dreamed that God would be forgiving
Then I was young and unafraid
And dreams were made and used and wasted
There was no ransom to be paid
No song unsung, no wine untasted

But the tigers come at night
With their voices soft as thunder
As they tear your hope apart
And they turn your dream to shame

The beauty and despair in Fantine's voice, she is alone and unemployed and as desperate as a soul can be, and then the music behind her!

And this one (tx youtube!)



I dunno, maybe I'm crazy, but hearing and singing along to songs such as these greats is my aphrodisiac of sorts! As a teen I sung these and many others at the top of my pathetic little lungs and they each moved me differently. I was in my mid-twenties before I watched the movies and read the books, but these songs are the true story.

Seeing Les Mis live is at the top of my Bucket List.

Most people would not guess me as a musical lover.

Welcome to my blog!

More About Summer Activities

It amazes me how our family song has taken! The kids sing the chorus over and over again, and when we are out rollin' about, they sing it as long as they can. If you visit our home, be prepared to be handed a sheet of music and sing along! LOLOL I love the song but it's beginning to drive me bonkers! AAAAAHHHHHHH!!! You too?! lol

On the topic of music, Benny continues to love his lessons. He knows the notes and the counts and some of the keys. A few months ago, my friend asked me if I wanted her piano, and narrow-sighted at the time, I turned her offer down. Oh how I kick myself! We're looking at electric pianos on Craigslist, and until we find one that we can afford, we're borrowing an awesome keyboard from yet a different artistic amigo. Who knows! - Maybe I will be publishing a concert someday! Or not! Okay I confess! - I am one of those mothers who hopes her house will be full of music!

Last Saturday we went to see "Pete the Pirate", a comedy, music, puppet and magic show at our local library. Whoda thought something so silly could keep a crowd roaring for so long?!

Summer is the best! Benny and Desty are enjoying their wading pool and makeshift water slide - we use this as a reward for taking their naps, and thus far it's been an ingenious summer parenting technique! Come October...well, we'll come up with something!

Dustin and I discovered Survival Swimming at Infant Aquatics in May 2007. We were looking for swimming lessons that would teach the kids to swim independently and teach water safety. This is important to me perhaps moreso as a mom with a disability, who'd be unable to react quickly in an accident. Of course, just because they have the skills, doesn't mean their safety is guaranteed, but it does significant improve their odds if they fall into a pool or even a lake. The first skill they learn is the float. The kids learn to get to a float from any position. It's not the "throw, sink or swim" lessons you may be imagining...

-------------------------

Hi Everyone, this is Dustin filling in while Tammy does her awful, terrible, horrendous Accounting homework. Infant Aquatics is really amazing! It's real cool to see babies swimming and floating! Yes, at first the lessons are not fun! In the beginning the babies or kiddos go 4 days a week for 10 mins a day; since they were just getting used to the water they were rather scared and they couldn't eat much before swimming. OK that's the end of Not Fun! Now that Benny and Destiny can swim they love swimming lessons! They go once a week for a 30 minute Fun Day to keep up on their skills. All week, every day we hear "When is my swimming day?". Last week Destiny missed her lesson because she wouldn't go to bed the night before and couldn't wake up in time. Today Destiny and I went swimming and she did the best swimming I've seen her do in a long time! She didn't want to take a break even for the group activity of "Motor Boat". Destiny is the oldest in her group called "Aqua Babies", where a parent goes with the child in a fun group. Usually, I'm the only dad but today there were 3 dads and 3 moms. This fall Desty will be swimming without me with a group of other kids and a teacher. It will be interesting to see how she does since as any of you who know her know - she is not quite so good at listening and following directions as Benny. We've kept her in "Aquababies" as long as we could but now she'll just have have to adjust - I'm sure she'll do better than a fish out of water. Infant Aquatics has great instructors - the kids love 'em and they really know what they're doing.

-------------------------

If the kids are supposed to be waiting on the platform, you can bet Benny is hanging or swimming off the side, practicing his skills and/or massaging his confidence. I'll post a clip of Desty swimming soon!

And then there's gymnastics which we all love! Since I've written about gymnastics in past posts, I'll leave it at that...

This One's For The Girls

Just up from a nap, Desty briefs me on her nightmare. A big red scary monster stole her baby doll, and then I run him over with my chair and saved her baby. This clip is barely audible but with your volume maxxed, you can make out some of Desty's description. (Notice my accounting book in the background)

It is a fact that kids are a source of great entertainment. My daughter, given the time to express herself, can provide hours of non-stop story-telling, and does so with so much pure animation that I'm torn between A) She has the natural ability to take us to Hollywood, or B) She's delusional and I should be seeking professional help for her. Unfortunately (and very fortunately sometimes!) for her, Destiny is the second child and is frequently compared to her big, intense, ambitious brother, who is very aware of the world around him. It is sooooooo interesting to see the two of them interact. Desty is artistic, doesn't give much thought to the world, and allows her imagination to drive her wild!

No doubt, Desty is the daughter I dreamed of having (on the rare days I ventured to go there). Desty is super smart in select areas, and she chooses those areas very carefully. She's a tricky one too. For example, we had been singing our family theme song for two weeks, and Desty showed no interest in learning it. Instead she'd dance around the living room, or carry her little piano over to accompany us. Then one day outta nowhere, she ran into the living room and shouted, "Mommy, Daddy! Let's sing the Unconditional song!" Destiny proceeded to sing the entire chorus a cappella style. I was stunned! But that is definately how she works with most things.

Oftentimes I actually think she plays a little dumb, so not to compete with Benny. When we are one on one, she let's it all out. She seems to have what I call "Baby-itis" - she professes she wants to stay little and be a baby. In fact, I'm sure she'd be potty-trained if not for this. We're not ready to push her just yet.

This past month, she has really pefected her role as Miss Drama Princess! We joke about this but it is the truth - Desty is acting hormonal. Can two and a half year olds have PMS?!? We'll be eating dinner and suddenly...a piercing scream, followed by a tearful uncontrollable cry. "What is wrong? What happened?" we ask. "BENNY LOOKED AT ME!!!!!!!!!!!!" and then more hurt feeling crying. She'll carry five dolls around the house and if one falls, WATCH OUT! LOL

The newest mad Desty screams and cries, throws everything, pulls everything from her dresser and repeatedly slams her bedroom door. Unless she is going out with mom, or going to gymnastics or swimming, she requests to stay at home. And now I ask, anyone want to board her in eight more years, until she's at least 15 years????????????? :-) (Laura, I have you down!)

You'd never believe my little angel had it in her!

My girl - happy or momentarily heart-broken - makes my heart sing and I'm sure proud to be her mommy!

Another Quick Laugh

After my previous two posts, this blog can use a little HUMOR! ;-)

Granted, my humor has always been a bit tainted.

This is one of Dave Lupton's "Crippen" cartoons that I love.......and, what do ya know, it kinda ties into my Trippin' post!

http://www.daveluptoncartoons.co.uk/crippen/cartoons/patronised/patronised002.html

BTW - Why does everything good seem to come from the UK?!?!

A Trip Inside My Mind

Watta week! Probably the best thing that happened to me this week is I just scored a really nice, like-new 2006 Graco convertible car seat for $20.00! (Of the many things Diana taught me, cyber-recycling and cyber-yardsaling is a fave!) One of my other good friends is coming to visit with her almost 2 year old son pretty soon, and now we're ready for them! The carseat will become Desty's, and will grow with her as does Benny's.
LOLOL Yes, this has been a hard week for me! ;-) It's hard to live in the present when your heart and mind are several hundred miles away, isn't it? Despression doesn't come easy to me - I don't know what to do with it. Usually I am supporting people through their depression! I had so much work and homework to do upon returning home from SLC - it was a great excuse not to leave the house. Yesterday I had to get out because I have class on Thursday evenings, and we couldn't put our Costco trip off any longer. We decided to eat Hebrew National hotdogs for lunch at Costco, and while I was saving a table for us, I became a blubbering idiot for no apparent reason...A bit embarrassing, but it felt good!

I survived Accounting again!!!!!!! My nose gets browner by the class! I am searching for an Accounting tutor......I'm finding gobs of math tutors but none to tackle Accounting. Oh, I take that back - I found a service that would find a tutor in Accounting for $40.00/hr!

This blog is without photos because all of our photos are on my computer which crashed AGAIN on Tuesday. LOL So, I have stolen Dustin's laptop AGAIN (Sorry Babe! :-* )

And now, inside my mind: While in Utah, I met and spent a few hours with an older, very traditional woman that lives a very modest life in the corner of Utah. Several times she made comments that would normally really piss me off, but did not because I knew her good intent and where she was coming from. One comment haunts me though..."It's incredible to me that with all of your struggles and personal miseries, that you are sitting here, here to help someone else." Using everything in me to conceal my shock and horror at her interpretation of my life and the comparison it seemed she was making, I replied, "Nothing I have gone through can even compare to what is happening here." (the pain and depth of Diana's situation)

I have been mulling over this on and off for six days. The idea that my disability bogs me down with struggles and misery, and so much so that it precludes me from caring for others, mystifies me. I've actually heard variations of this numerous times. On one hand it makes me chuckle, and on the other hand it really saddens me. I know some people that do blame all of their unhappiness on their disability, but if you ask me, I'd say more than likely, they'd be unhappy regardless of disability. Disability - especially aquired - takes time to adjust to. I know probably over 1,000 people who are DISABLED & PROUD, and that is where I fit in. Ninety-nine percent of the time, I do not even think about not walking or my speech impairment as a negative thing. What is the big deal?! Who the fetch cares?! Well, unfortunately society, I've learned, and everyone with a disability learns. It is that fact that angers me.

So today when my friend sent me a link to a Yahoo News article entitled “Americans would rather be dead than disabled”, I was not surprised. It’s a super sad phenomenon, if you ask me.

The funny thing is, people/society oppress me, my disability does not. We cannot, nor should we, eliminate disability. But it seems to me that as a society, we can and should change the way we think about it. Not merely the way we think about people with disabilities, but all people in all "groups" that we, as a culture, have stigmatized.

Visiting Diana

Last night we returned to Boulder after spending the weekend in Salt Lake City. First of all, thank you to Mee-Maw and Papa Icky, who took the kiddos on short notice which allowed Dustin and I to visit Diana and help out where we could. Diana is one of my bestest Utah friends, and more than that, our hearts and our families are bonded together in many ways.

I met Diana in August '01 - one month after I arrived in SLC. She was considering a VISTA position at Disabled Rights Action Committee, but decided against it. (At the time, she had no known physical disability.) Diana and I met again at VISTA conferences, at various community events and finally through church, where our friendship eventually blossomed.

We were pregnant together, and we delivered our first-borns on the same day (so TRUE!)!! Benny and Samara drooled together, screamed together, napped and played together. Destiny was born, then came her little Spencer. Diana is much like a sister to me - we count on each other for help and support, to laugh with or to cry on, to celebrate milestones, and exchange advice, even if much time lapses between visits.

(From Benny's scrapbook)

Diana taught me how my family of four could survive off of $1,000/month in Utah...If there is a freebie to be had, she will find it AND share it! LOL She found what would become Desty's "Bunny Blanky" - this soft little pink blanket that Desty has been attached to since birth. Diana is the best friend a person can hope for, and I'm afraid I take our friendship for granted too often.

Last Monday when I learned Diana was in ICU, I was utterly shocked and mortified. It was just two years ago that she learned she has a rare form of MD. To make a long story short, we packed our bags and left for SLC on Friday at 5AM. Diana was out of ICU by the time we got there, and in Neuro Acute. Despite all of the pain that she is in, the drugs, and all the machines and gadgets she is attached to, Diana is still Diana with her beautiful smile and quick sense of humor. She cannot talk yet after her tracheostomy so Dustin and I did a lot of lip reading.

On Saturday, Dustin and Troy (Diana's hubby) took all four kids to Classic Fun Center, and they had a blast! I'm still tickled that they tried to get the "Mom's Special" discount. :-) The clan went to the Bounce Zone, the Jungle and concluded their exciting day by skating!

On Sunday evening Dustin and Troy took a hike into Millcreek Canyon. It was great for the pair of them to get away. The guys have the same problem - their wives can only go on accessible hikes and their kids can only do short hikes. I'm glad they went - they'll have to go on more dates in the future!

All I wanted to do was hang with Diana, and spend time with her babes. There were times I would've given anything to take her pain, but the reality is, I would've probably given it back within sixty seconds. This is rather twisted, but I wish all doctors and nurses had to experience that sixty seconds of pain as Diana knows it...The medical realm would be much better for it.

For the first time in my seven years traveling between Utah and Colorado, I wanted to stay in Utah longer. In the three days we were with Diana, her improvements were significant. I would like to be there as she gets into her wheelchair again for the first time since she got sick, or as she enters her home again. I cannot wait(!!!!!!!!!!) for her to get strong enough to use her artificial voice box, and let those nurses really have it! But I need not be there, as Diana has an unbelievably large community of family and friends who will be there every step of the way.

This a picture of Diana and I at 5:40 on Monday morning, as Dustin and I prepared to retrieve our kids from Mee-maws and return home.

We made a deal: Next time we see each other, we will BURN THIS PICTURE!!!!!!!! Yesterday she got her ng-tubes out (meaning no tubes up her nose!) Progress!!!!

Benny made these drawings and he's mailing them to his friend, Samara, tomorrow......