Breaks are hard

I have said it many times...but I'm serious. Asia does so much better during the school year. Breaks are hard on her. Even though she is in summer school ESY, which runs 3 days a week for a few hours it's not enough and it ends next week. It's like she doesn't know what to do with herself. School gives her a routine, a challenge, excitement and home is "boring". It's hard for us to go out and do things right now. With little ones at home and Asia acting like a 2 year old most of the time we can't go anywhere unless Dad is home to help us out. Swimming or parks are virtually impossible, she runs one way and my two year old runs the other. I have to do things with them one-on-one, so that requires finding sitters. So in the home, she is the unexpected tornado that whips through and destroys everything in sight-and she finds it funny! Argh! She dumps out the cereal boxes, rips the wallpaper off her walls, she starts things in the microwave (things that should never be in a microwave), she tears up books, empties the fridge and cupboards, throws stuff in the toilet, she colors on the tile floor, she'll get 10 slices of bread and smash them in her hands, if the door is unlocked she'll run away, she doesn't understand what "glass" is.... and really the list could go on forever. You have to watch her like she is "2". She only ever wants my phone, to look at the pictures on it. I wish she would find a new interest. I just hate having her sit all day on the phone. She flips out when she can't have it.

She brings me back to the reality of her syndrome when she tries to eat things she shouldn't like the flowers outside, soap or crayons, throws her plate of food at you or dumps out her drinks, I hate to admit that this has now happened three times but if I step out of the room while she is bathing she finds the toilet plunger to bathe with-ahhhh, I can't think of anything more disgusting, can you!  She is not sleeping very well? We had to replace her french door on her bedroom to a regular door for fear of her breaking it-she bangs on her door with her hands or toys to try and get your attention in the middle of the night. There are some nights I am surprised if she gets more than a few hours of sleep. Not sure what is going on, maybe it is seizure activity. Most summers I am sad when school begins but this year I am so ready. I can't get a single thing done right now-my 6 year old will even be in school all day:) After all of this, life with Asia is still better than it used to be:) At least she is more pleasant, happier and she now will walk up behind me and give me the hugest hugs and rock back and forth making a humming sound. She says "love you" and want you to hold her like she really is "2". She even initiate kisses-which is so sweet. This all helps when I am pulling my hair out.

Where to start....

To be honest, I am not even sure where to start in order to catch up. I will start with now and I will try to be better...Summer 2014 and doctor's appointments.

The last few months have been completely chaotic with events that I can not go into detail about right now but lets say it has been one of the hardest times in my life. I will focus on Asia. She really has had such a great year! Biggest improvements were noticed when she was completely weaned off of Topamax! The girl got her appetite back and has gained over 10 pounds! Her pediatrician at her last appointment was flipping out at her growth chart. She went from always being in the 1-3% tile in weight to the 22%! The graph they print out went from a  tiny zig-zag to a line going straight up. With this I have noticed more energy, strength and she does not get sick as often. And then there's the speech. Wow, the speech-people are in shock. She still does not "talk" but she tries so hard, she makes conversation and says new words all of the time. I am so hopeful that she will keep progressing. Also, the behavior has improved. We can go somewhere and be pretty confident that she will not flip out. Many have commented on how calm and happy she is. These things make the world of difference in day to day life-I can't wait for the day that I can take her off of Depakote!

On the other hand...we weaned her off of Topamax because we didn't notice many seizures in the last year. I may have been wrong. What I have been noticing though was happening before we weaned her so I don't think weaning her had any effect on seizure activity. Last school year, I would randomly get a call from her teacher or the bus driver telling me to come get Asia she has thrown up. Bummer she was sick but ok and I would go get her. The same thing would happen at home here and there, she would throw up but I was confused at what was wrong because she didn't seem sick, she wanted to eat right away and no one else would be sick in the family. It wasn't until a few weeks ago I noticed her eyes looked weird. Kind of half closed sometimes, looked like she may have a headache but then they would go cross-eyed or one would drift out to the side. She would start acting a little strange, even put her hands to her head or face and guess what, she would throw up! Have I been missing the seizures?? Migraines? Seems impossible when I have seen so many and so many types but nonetheless we have a EEG next week and a Neurology appointment.
The EEG is only the hour long one, which we never seem to see anything in the hour EEG-really it should be overnight but we will give it a try. If she is having seizures it only gives me a push to start her on Charlotte's Web-because as of July 1st it is legal you know:) I also hope this will replace her Depakote as well.

The poor girl has to get ear tubes again. Her third set and I thought by age 8 she would be over them. She has not been passing her hearing tests on the left side which is her good ear. We suspect there has been fluid in her ear since at least February-could have been longer? Hey, maybe this will help with speech too?

New braces are ordered for her ankles too. She out grew her last ones which we had cut down to be just a foot plate and watching her lately (maybe it's all of the new weight) she is not walking real well. One ankle is pronating quite a bit (bending inward) and she seems a little off. This is a new brace, doesn't cover the whole sole of her foot so it gives her some freedom for flexibility and then just above the ankle. It may be a good option, unless it helps her to run away faster:) I think its a new product so I will post a pic when I get them in.

My summer has unexpectedly filled up with doctors appointments. I guess I may as well do it before school starts right?

I am also going to mention this-because I didn't know and it could have saved me thousands of dollars over the years. Right now Asia is on Disability Medcaid. Someone mentioned she may be able to get diapers covered under insurance and guess what? I just got my first months supply delivered-I am a little shocked. I really had no idea. She has out grown diapers so they are a pull-up but that helps out a lot!

Aside from the medical, she is finally starting to tolerate the pool, Yay!!! She doesn't mind getting in for a little bit-she has every year past.

Asia can ride a bike?!?

I am terrible at blogging.....I have been so busy with my other projects that I have not made much time to post updates on Asia and I feel guilty every time I think about it. I guess I shouldn't feel bad? Things are busy but I feel sad because I want to document those things that Asia can finally "do" or updates on her health or syndrome. To share info that might help others....you know. I will catch up on some of them soon I hope. I also kind of figure anyone that looks at this blog is already involved in Asia's life somewhat and already knows about everything I post, right:)? I definitely want to share this. Remember last year, Asia was gifted with a special needs "bike". She was no where close to being able to ride it. She couldn't pedal, no muscle strength. I really hoped that someday she could. It would be amazing if she could ride along her brother outside and actually "play" like a normal child. Well, this year we pulled it out and guess what? Asia can ride her bike!?! I was utterly in shock. She doesn't have steering the bike down yet but I don't think it will take much time. She was in bliss and I teared up, happy tears.

Angels Hands Annual Event!

This is such a fun event! July 19th Murray City Park. Hope to see you there!!

Join us for the Walk with Angels

We would LOVE you on our team! Team Asia raising awareness for 2q23.1 Microdeletion/Duplication Syndrome. We have signed up for the annual Walk with Angels-organized by the United Angels Foundation. May 31st in Lehi Utah beginning at 9:30 am. More info here or if you have an Angel sign up! https://www.unitedangelsfoundation.org/walkwithangels/index.html This is a great organization doing so much for the special needs community-we are happy to participate in this activity!

The United Angels Foundation is proud to announce the Walk With Angels. This event provides an opportunity for family, friends, and members of the community to show their support for parents that have children with special needs. We encourage you to join a team and attend this wonderful event. With your support, we can reach out to more families and provide them with assistance, resources, and the opportunity to connect with our wonderful members. We use the funds raised from this event for parent educational seminars, youth and family activities (including Freedom at the Pool, Hee Haws, and our annual Christmas party, as well as age-related activities), and to administer our newborn and new member program. Please join us in advocating for all the angels in our community!

So... Asia has a chance to win a desperately needed new iPad:) It will take a lot of donations to her team but nothing is impossible! Go Asia:)

Link for Team Asia!

http://www.walkwithangels.info/view_team.php?team_id=271

Just a update

Gah! I haven't posted on here for awhile! I have been so busy and I do have a few things to report. I am sure I am missing some things but first thing is-I had to buy Asia new clothes and shoes because she has grown! I think she has had the same shoes for 2 years, and I went from her size 5 clothes to 6-8. This sounds weird but, for a child you usually buy new clothes and shoes all of the time because of growth, Asia hasn't been like that-she's a munchkin. Right now she is doing so well. Since we weaned her from one of her anti-seizure medications Topamax, she has gained 5 pounds-yay!!!! Seriously this is so exciting. The girl has weighed the same for years I swear, she is also growing taller. It is great that she is eating a lot more and looks so much healthier. She is also speaking so many new words! She is calmer and more focused. They are even seeing it at school! It only gives us that much more of a desire to take her off of her last medication Depakote-to see her full potential. If she reverts to having a lot of seizures at that point we will try CBD oil before giving her anything else. This also makes me a little worried, I am hoping she is more advanced at her full potential but, she may not be.  I have to remember not to expect to much.

Asia turned 8 years old this month!! She LOVES her birthday and we took her to one of her favorite places for a birthday party with all of her cousins-to ride the carousel. She was so into it this year-really fun to see. I'll be taking new pictures of her in the next month or so, it seems like I just did this:)

I don't want to forget to mention on here that it is Autism Awareness Month (1 in 68 people) . Autism affects so many friends & family and Asia is ASD (autistic spectrum disorder). Spread the awareness!!

http://www.autismspeaks.org/

We are currently on spring break and she def needs to go to school. Everyday she asks for the "bus" and she is getting cabin fever! We go out but, when inside she completely destroys the house and melts down a little, she thinks it's funny to scream and slam doors-she just needs the school routine. She turns into kind of a monster when she is out of that routine.

Last Day of Aware of Angels Launch!

I have been so busy with Aware of Angels and HB105 I have neglected this blog a little....sorry! Today is the last day of the AOA launch and just in case you have not visited our website or Facebook page you will want to today! We have a huge giveaway that ends tonight at midnight. It is really easy to enter, just find us on Facebook and look for the blue giveaway tab at the top to enter. You can also enter on Instagram. This has kept me very busy but, we have found lots of new friends and we were able to spread a little bit of Awareness for these Angels!

We also have awesome Aware of Angels shirts! Only for the launch ~ now through Monday the 28th, with a $25 donation to Aware of Angels you can select the shirt of your choice. Details of shirts are on Facebook.This price will raise after Monday to $75. We are a non-profit organization and these funds will go to help our Angels find a diagnosis, research and sponsor the Photography Project. Any questions let me know!!

Facebook Link: https://www.facebook.com/awareofangels?ref=hl

Website Link: http://awareofangels.org/

My Special Project-Aware of Angels

I know I posted awhile ago about a special project I was working on-well, I am ready to launch this project.! It has been in the works for over 6 months now and I am ready to share. Aware of Angels non-profit organization will now be my "baby". I am dedicating full time to this organization. The idea for Aware of Angels started after I had joined a Face Book group for my daughter’s rare genetic disorder. One of the Mom’s in this group was so excited that she was selected to have some photography work done for her daughter by a volunteer photographer. I, being a photographer, thought “what a great idea, how can I sign up to be one of these photographers?” I researched this a little bit and found out there is a national organization of photographers who did this voluntarily and I was about to submit an application when I had the thought “why don’t I just do this on my own?” At the time I was really trying to decide what to do with my business and how I could turn it into something I was really passionate about that also had a lot of meaning to me.  From there, it became not just about photography but, how can I incorporate photography into something much bigger? Aware of Angels became my project. With the experience's I have had with Asia and just knowing how much help is needed for families just like ours I became very passionate about helping. I am going to raise awareness for children with genetic disorders to promote research. I believe awareness equals research and new discoveries made for one group may help another. I will assist those who are still looking for a diagnosis get the testing and doctors appointments needed when out of pocket funds are low and insurance will not cover the cost. I am sure over the years it will become what it needs to be but, in the end it is all about these beautiful children and trying to help them the best we can. I am also including a Aware of Angels - Photography Project:)

If you want to know more or have questions about this organization the website would be a good place to start. http://awareofangels.org/ 

I am virtually "launching" AOA starting tomorrow and running it to 03/28/14
Our Aware of Angels facebook page is the place you will want to go for updates and current news.

We are holding some awesome giveaways on Face Book and Instagram; to have some fun, to try and reach as many families as we can who we may be able to help, to look for sponsors and raise awareness of our organization. Link for giveaways: http://tinyurl.com/ocyr7yk

Thank you! I would love to have as much support as I can get and referrals are great! You can find Aware of Angels on:

Website: http://awareofangels.org/ 
Twitter: https://twitter.com/childgenetics
Instagram: awareofangels
FaceBook: https://www.facebook.com/awareofangels?ref=hl
Pinterest : http://www.pinterest.com/childgenetics/


Season

Charlee

Post for Charlee...

Charlee-I wouldn't feel right about not sharing this information. After the last post, I wanted to let you know that Charlee has ended her battle with Batten Disease. We are grateful for her family and what they did to help pass HB105, as this new law will be known as Charlee's Law. Thoughts and prayers with her family through this tough time.

xo Season

Her Website: http://www.charleesangels.org/
Her FaceBook Page: https://www.facebook.com/charleesangelsbenefit

Cannabis Bill Passes-Will be known as Charlee's Law

It has been a crazy busy exciting couple of weeks, actually I should say months! Asia is doing so well, she took her last Topamax pill about a week ago and she is doing fantastic. You could tell she was having some good and bad days, I suspect that she had a few migraines that included throwing up. I am sure weaning from a medication that she has been taking for years would cause this effect. Her screaming tantrums have calmed down a little and now she is a "laugh-er", and boy has she gotten spunky. If you need her to do something--she will sit down laughing just to be a rebel. She has gotten so fast, she is starting to run (gallop) really quick! New words everyday and her eating has improved a thousand times! Her bus drivers and school teachers are constantly telling me about the new things she is saying and doing and they are sooo excited-it is such a relief. She has begun saying some words she hasn't said in years (including the word "purple"-yes, I am excited about that one) her teacher mentioned she has started calling two classmates by name (we didn't even know she knew their names) it just keeps getting better. Next goal (down the road) will be to wean her off of Depakote--I can not wait for this day. I can't imagine what she could be like without any of these anti-seizure meds messing with her ability to develop and communicate. This brings me to my next topic-

Yes-Yes-and a Yes! You may have seen my past posts on Cannabis, Medical Marijuana, Alepsia, Charlotte's Web, Hemp oil or HB105 and what it meant to us with a child with epilepsy. Well, several amendments later, this week the Utah senate passed unanimously House Bill 105 which will allow the families of Utah, under the supervision of a neurologist, to bring this hemp oil into the state with out fear of prosecution; to treat their children with epilepsy. This gives so many families so much hope. If Asia regresses, and begins to have these severe seizures after being weaned off of her current medications-I will not put her back on them. I will now be able to purchase Hemp oil or "Charlotte's Web" from any state that sells it and bring it back to the state of Utah.

The HB105 process was a lengthy one with hundreds of man hours put in. A process I wish I could detail but there is to much, I don't even know half of all that was done. A special thanks to the dream team: Representative Gage Froerer, Laura Warburton, Senator Steve Urquhart, Jennifer May, Annette Maughan, Emilie Campbell, April Sintz, Realm of Caring and all of the families that help spread awareness and educate others on what this plant can mean for the medical world. The change of heart that we saw in people who started off completely against it were, in a matter of months, for it- this was nothing short of a miracle. Not only is the state very supporting but, I heard several senators mention that this was a first step in this type of treatment. Wow-beginning with a "no way" and ending up with a lot of very open minds. This type of Hemp does not cover all of the medical patients looking to marijuana as a medical treatment and I sympathize with them-hopefully, others will begin to see the many uses of this plant. Different types of marijuana plants have a great potential to help those who are suffering. The bill has a two year sunset to review the progress that our children are having on this oil. I will be so interested to see how the results turn out and where Charlee's Law will take Utah when it comes to alternative medical treatment.

Charlee's Law

HB105 will be dedicated to our special friend Charlee. Charlee battles Batten Disease and is in her last couple days of life. Charlotte's web would not have cured her but, would have helped her control her severe epilepsy. She is a beautiful Angel and her parents brought her to the Senate vote. It was a very emotional time for all parents and senators in that room. I have listed her Face book page and her website below. Please take a minute to look at them. Thoughts and prayers to Charlee's family.

Her Website: http://www.charleesangels.org/
Her FaceBook Page: https://www.facebook.com/charleesangelsbenefit
Charlee's Law: http://fox13now.com/2014/03/11/senate-passes-cannabis-bill/
Charlee: http://www.sltrib.com/sltrib/news/57660495-78/charlee-oil-catrina-cannabis.html.csp

Lots of Links!
Interactive photo gallery of some of the HB105 children. Look for Asia and her friends: http://www.sltrib.com/sltrib/news/57636966-78/sltrib-com-html-http.html.csp

If you want to know more find Hope 4 Children with Epilepsy. Here is the FaceBook Link: https://www.facebook.com/Hope4Children
Website: http://hope4childrenwithepilepsy.com/

Some Recent News Articles:
http://www.sltrib.com/sltrib/opinion/57672075-82/oil-cannabis-utah-federal.html.csp
http://www.ksl.com/?sid=29057129&nid=148&title=families-encouraged-as-lawmakers-ok-hemp-extract-bill
http://kutv.com/news/top-stories/stories/senators-unanimous-favor-cannabis-oil-sick-kids-10081.shtml

Just out-Weed 2:  http://www.cnn.com/2014/03/05/health/gupta-medical-marijuana/index.html