I just don't know...

It's really hard to talk about sometimes. I wonder if there isn't more I should be doing? I have finally had to admit (to myself) that G is not going to be ready for mainstream school next fall. Not only is he super small, he just doesn't understand things other kids do. I am so tired of fighting teachers and doctors who's response is mostly "he'll be fine". You really cannot expect my child to wash his hands and get in a line without a reminder. He can't color or write his name. He doesn't even want to try because his little flexible hands can't maneuver pens and such. Then there is the whole can't smell issue...how do we cope with this? How do we teach him that other people can smell things and he never will? How do we teach other people that he has no idea what a flower smells like, or home made cookies? How did he bond to us as an infant without smelling? Did it happen later? Was he 1 or 2? Did he fall and hit his head to cause this? Was he born that way? It's really hard not to just cry for him. How can I fix this? I am trying so hard to be strong and fix everything that comes up to make life normal for him but how can I make this better? Could be worse, it can always be worse. What if there is a fire? He can't smell the smoke. Maybe we should avoid a home with gas in it, he could never spot a gas leak. How as a mom can I make this better?

He got sick over the weekend. Not sick sick just noticed he lost his appetite, well what he has of one. He went almost 24 hours without urinating. After a trip to urgent care and a rash and ER visit later we have nothing. I am hoping it was indeed nothing. Still can't get him to eat much. Do I sit on him just to shove a few bites of turkey in his mouth? I hate when people judge that you are a horrible parent based on what you feed your kid. I find it awesome you can get your kid to eat some tofu and organic juice. Mine won't even drink juice or eat vegetables. Of course now knowing he has anosmia and can't smell anything makes more sense as to why he won't eat things that are pretty normal for even a picky child. But again, how do I fix this? This could be another reason for FTT but why? Why? I just want some answers. I just want a reason. Something to point us in the right direction, a reason that will allow him some extra attention in school. I worry now even more. But I am just happy that he is such an awesome kid. Even when he should be feeling pain and discomfort he will smile and appreciate the music in his heart. I just want to make things easier for him. Just not sure how...

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?

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.

hostgator

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.