Summing it up.

I stole this from a post on Facebook and modified it a little bit.

I am the child that looks healthy and fine,I was born with ten fingers and ten toes and a cute button nose! But something is different with me,and nobody really knows what this could be, and it isn't always easy for people to see. I am the child who struggles with words when I talk, who sometimes gets out of breath and in pain when I walk. (and then I begin to cough)

I'm not lazy, I'd do more if I could and I try with all my might to be like everyone else! I am the child who dreads sudden noise,it hurts my ears....making me cry and along come the tears.

I am not having tantrums but my stomach hurts really bad, that makes my family really really sad.

I am the child who tantrums and freaks,over things that seem petty and trite,lost in my own anger and fright. Perhaps there's a reason I'm made this way...some message I'm sent to share...For I am a child who needs to be loved and not misunderstood.I am different...but I just look like you.

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All children have special needs, some are just different than others.

Labels are for underwear, not for children.

New Doctor, Same Issue

We found a new specialist and of course jumped through all the hoops to get the referral and make a new appointment. Of course weeks in advance we asked for records to be sent to the new facility so that the specialist can take a look and we won't have to repeat 4 years of medical history by memory in 10-20 minutes. Then ironically while we were speaking with the specialist the other hospital called to ask questions on where to send the referred information...really? Ugh! Thankfully they faxed a good portion, just as we were leaving. Not that it helped now but hopefully at his follow up appointment it will.

She took another x-ray of his abdomen to check to see if he had any constipation still. We figured maybe a little but since he takes medicine daily he should be fairly good. Well, I was wrong.



He has 5.5 cm of poo lodged in his rectum. It was all I could do not to cry. She decided that we needed to do an enema ASAP (at home) and gave us more instructions, and medicine lists to give him in the next few weeks so we can follow up with her in a month to see if hes any more "cleaned out".

The enema, milk and molasses. Not just for cookies. It scared me to do this but we did it. Thanks to wonderful daddy support. I could not have done that on my own. I swear this kid will need therapy one day. "When I was 4 I remember my parent's holding me down and shoving something warm and sticky up my bum that smelled like cookies." So wrong. Picking up more meds soon and hopefully he will not turn into a runny mess of poo in the next few weeks, but then again better than a stuffinyourrectum mess of poo that he has been suffering with for well, his whole life. No thanks to the many doctors at VMC that refused to listen to us, and finally one at the ER that did. Anyhow, he was rewarded with some KFC and a cheese stick. We promised to play rock band with him tonight as well. Poor kid, but it could be worse right?

Love this! but a thought...

I read this article by Stefanie Wilder Taylor regarding her daughter. Its a great article, but my thoughts are what if this was a boy instead of a girl? I don't think parents would be as apt to let their young 3 year old wear a tutu or some sparkly Sketchers. Not saying this is right or wrong but it is something to think about.

http://blogs.babble.com/babble-voices/stefanie-wilder-tayler-baby-on-bored-electric-boogaloo/2011/09/19/my-shopping-spree-with-chaz-bono/

Research Study

When we discovered Graydon had a flat head, misshaped in a big way we started seeing specialists. I know I have mentioned it before but he was fitted for a helmet when he was 6 months old. He was to wear it for 4-6 months 23 hours a day. At our initial visit at Seattle Children's Hospital when our baby was just 3 months old the ARNP we saw said he had plagiocephaly and brachiocephaly. She initially thought he had torticollis and referred us to physical therapy for him immediately. It turns out that he did not have tort but had overall hypotonia. After the ARNP wrote the referral she asked if we would like to be part of a research study for children and infants with plagio and brachio. We agreed and signed up. We figured if nothing else they may figure out what is wrong with him and possibly give us more resources. He went to several visits over 3 years and had one MRI relating to the study. (He had another MRI later for medical reasons.) They would send us updates and so on but never really heard the results. I belong to a group on Facebook that is for people with hypotonia. It is a great support group. Many people from all over the globe sharing stories and advice. I wish I knew about this years ago instead of just a couple months. There is a mother there that was denied helmet therapy for her child and while I was looking for links for her to campaign to her insurance company to show its medically needed and not cosmetic I found a link from an article detailing the research study Graydon was in. He was one of the 472 babies in the study, obviously not part of the control group. I know initially we were told he was the first child with plagio that had a successful non sedated MRI. Thankfully it was clear and showed nothing wrong. All of his Bayley tests showed significant global delays. 6-12 months behind "normal" children. It was the urging of Dr. Brent Collett that made me push to have Graydon retested for speech delays, after the initial one showed he didn't need speech therapy. A copy of that Bayley test from a high ranking professional at an acclaimed children's hospital held merit when I waved it in front of the people who said my child didn't NEED speech therapy. They suddenly agreed he did. Anyhow...this is the link.

I am so glad to share and hopefully some good came from the study and it gives other parents more of an edge to fight for their children when professionals refuse to listen.

Another link to a similar story.

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I R Suck. Update and Update.

Seriously the blog thing has not been happening like I would like. I have lots to say but really not sat down to write it out. Here is the mini update for the year.
Finished college in June just 2 days before my youngest turned 4. (Where did that time go?) I got a degree and 2 certificates. Of course I didn't have to worry about finding a job, because I always had one. One I might add that I am very grateful for. Everyone gets along, usually. They understand needs to leave for medical appointments for my child with hypotonia and other medical issues, specialists and ongoing speech therapy. But it is good to be done. I *thought* I would have a ton more time for stuff like blogging, and ebay...HAH! Yeah no...not sure how I coped before with homework and everything school, work and family.

Moving on...G turned 4. He is doing pretty well progressing with his delays. Still not on the level of other kids his age but not too noticeable to others that meet him. Potty training is the big frustration now. He can pee every time, usually. But pooh is another story. He freaks out, tells me he doesn't know how, runs, hides...UGH! It is hard to tell whether he is internally damaged (Thanks to the wonderful doctors that wouldn't listen) or just fearful, or maybe a little of both. We hope that he makes progress before next fall when he is supposed to start kindergarten.

KC did another summer at theater camp (maybe that is where my time went?). She LOVED it. She even had a lead role with a singing solo. I certainly would love to get her some lessons and maybe get her involved in more theater stuff. It costs money which is scarce these days thank to a certain person that refuses to help with things that...well never mind. Tay spent the summer at my parents working as a laborer. He also helped other family members out and earned some cash. It was good for him. He turns 18 in a few weeks. CRAZY. I am so not old enough for him to be my kid. He has a lot to do this year. He needs to pick a college, we need to do some senior pictures. He has some super hard classes, calculus...physics. ACK! KC is taking algebra in 6th grade...I am not smart enough to help with homework anymore.

I also came to a realization that maybe I knew but never really sat down to ponder. My oldest will be graduating from high school on June 13. The day before his baby brother turns 5, yes FIVE! This means one graduates and another begins. HOLY F()
Speaking of the above mentioned grandmother, we also lost her this year as she left to join my grandfather. She had a broken heard for the last 4-5 yrs. My mother, bless her heart, took care of her until the day she died. Spending nights with her at home and even in the hospital till she took her final breath. There is another story to this I will tell later.

The rest of the year will be busy too. My son turns 18, my daughter will be 12 in a couple months, then Christmas....oh my.

But for now I am going to sign off. More to come!

My Personal Magic Kingdom

I have been busy. But I am almost done and will be moving on to other projects long forgotten about. But for now I am posting an essay I wrote for a class I am taking. Let me know your thoughts. I am sure what I wrote is not at all what my teacher expects.

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Q: I would like you to write a 1-3 page double spaced reflection paper on your future career or job. In this paper you should discuss your dream job and how you are going to make that happen. Also integrate the other areas of your life and talk about the ideal of what the next 5, 10, 15, 20 years can look like.

Walt Disney looked at an everglade in Florida and saw a magic kingdom, by following these simple principles: Dream, Dare, Believe, Do.

I want you to create your personal magic kingdom.
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Self Assessment 9

I have been thinking of what I should write for this. Of course there are dream jobs but I am a bit more realistic. I also don’t have regrets. When I first came to GRCC I was on the edge of losing my job with a company I had been at for nearly 7 years. I had learned with the company, grown and possibly even became a little outdated. My field is marketing and design but as the economy tanked, so did the company. The owner put me in the bookkeeping/accounting position as well as my regular duties that were dwindling because of our budget cuts and no money for advertising. He had a hard time finding someone he trusted so he put me there and trained me as I had no real experience in accounting other than working as a teller years before and the ability to balance my checking accounts to the penny.

A year after mostly self learning, and having the mindset of saving the company money anywhere I could, which is much different than the advertising mindset, I was doing very well. Then the owner died suddenly. I was faced with this uncertainty of the company, even more than just the bad economy. I thought about my options, I am not one to dwell on the bad. I am more of the take action and make things work mindset. So with the company slowly going under because of the death and family squabbles because these people had no clue about the company business, I decided to check into making my accounting skills more official. Only a few months after starting school the company closed, but I was fortunate enough because of my connections to find another part time job in the industry I was coming from. The company knew me and my capabilities already and being versatile helps. I have been there almost 2 years now and love it. I really don’t think much about a dream job. The economy still scares me and you just never know.

I could write a paper about how my dream job was to be a great photojournalist or a personal assistant to someone high up. Both of which I feel I would be good doing. But I really don’t know for sure if that would be my dream job. I guess what I am trying to get to is I am already doing what I like and at the same time on a path where I am continuing to grow and learn. I know eventually I will move on to another company for some reason or another because nothing is permanent. To say where I think I might be in 5, 10, or even 20 years is not something I can honestly predict with any accuracy. Looking back I am not where I would have at all guessed I would be even 10 years ago. Especially 20 years ago.

Right now my focus is on doing well and taking care of my family. I don’t think I could write about my dream job because I already have it within my current life and family. Maybe if I were asked this question 20 years ago, I would have a whole different answer for you, but I am being realistic and the dream job I may have had then, is not something I would be happy with now. So I am happy to say I am living my dream and I have no regrets. I believe if I at least continue to appreciate life and take things as they come whether they are planned ahead or come up by surprise, no matter where I end up I will be happy. That to me is the only point to life. That is my magic kingdom.