Chips, Cheese and Sometimes Marshmallows

Life with 2q23.1 microdeletion syndrome (chromosome 2)

Chips, Cheese & Sometimes Marshmallows? What? Let me explain, if anyone knows my daughter Asia this completely makes sense:) Not only do we have many medical issues but, food issues are one of our major daily obstacles. You'll see...

Asia's List of Symptoms (2q23.1)

Whether or not all of Asia's Symptoms are related to the 2q23.1 microdeletion is unknown at this time:

At this time her symptoms are: Seizures, Hypotonia (muscle weakness), Development delay, Motor Delay, Language impairment, Non-verbal, Ataxia, Behavioral problems, Sleep disturbances, Short attention span, Repetitive behavior, Aggression, Autistic-like Symptoms, Sensory Processing Disorder (hypo-sensitive), Tongue-tied, Sacral Dimple, Possible Macroglossia (large tongue), Sandal Gap on foot, Constipation, Blepharitis, Hearing loss & Microcephaly.

~This list may be edited with new information~
There are additional symptoms with this rare syndrome that Asia does not have.

Many people contact me to ask what type of testing Asia had to get her diagnoses. Asia had a simple blood test performed which is called a "Cytogenic Microarray". There is a post in the blog that goes over this a little more.

Conact Info and Support Group

2q23.1 Microdeletion Syndrome has a great support group on Facebook. It is a closed group where parents can discuss their questions/concerns about their children with 2q. When logged into FB just search 2q23.1 Microdeletion Syndrome and find the closed group and "join". Also, please feel free to email me with any questions at seasonatwater@gmail.com

Friday, November 29, 2013

Potty Training! Yikes!

Not the greatest topic but, I know so many that are struggling with this with their own children so maybe we can share tips:) Please leave comments with helpful tips! How do you potty train a special needs child who does not talk???

Asia is 7 yrs old and can not use the toilet. I can't even tell you how many comments have been made to me about potty training Asia! It's not that I haven't tried, it is something that has never clicked with her. I felt really bad until I learned how many other children in her situation have had the same difficulties and their ages. So last week Asia started showing some signs of maybe...just maybe-a opportunity for some potty training both at home and at school. Her teacher commented on the same things I was seeing at home. All efforts in the past have been a complete waste of time:) We will try it for a couple of weeks and see what happens. What makes this very difficult is that Asia doesn't even get herself dressed, she has a very hard time even pulling her pants up and down. She is super unbalanced and feels really nervous sitting on the toilet. She does not speak well, for her to tell us something like "I have to use the bathroom" won't happen. I am pretty sure she understands everything we say but she has a hard time following instructions. What we noticed last week is that she would point to her diaper and say "diaper", so we have been changing her when she does this. She has also been watching her baby brother use the potty and so she has started saying "potty" and when she does I bring her into the bathroom. Before she gets into the bath tub I always sit her on the toilet while I am filling the tub with water. I found her in the bathroom one day with pants part way down and she was putting toilet paper in the toilet. So I know she is processing thoughts about it. I have also promised her all kinds of things if she goes on the potty:) Train rides, a trip to the mall with her cousin-and it's funny because she will tap her diaper and say "mall". I'll say "yes, I will bring you if you use the potty":) Treats don't work with her, it's hard to "bribe" her into doing anything:) I think she knows what to do but maybe she doesn't have or recognize the "sense" of having to go? She can have a soiled diaper and doesn't even seem to care? She never shows any sign of wanting to be changed. Over the holiday weekend I thought I would see what would happen if we tried some potty training.

I think a first step is just going to be getting her use to sitting on the toilet. It's not comfortable and she is very nervous-and when I say nervous she often goes ballistic, there is a fear there I don't understand? Her school teacher is amazing and is on-board with the potty training! She is even willing to go to "straight undies" which makes me scared:) She said they would take her every 30 minutes and I just need to send a lot of extra clothing. While we are on Thanksgiving break I thought I could jump start the training but I am starting with Pull-ups:)

Day 1: Trip to the bathroom every 15-30 minutes (unless she was napping) with books and iPad. This toilet seat I have found is a "must have". She is comfortable to sit on her own and doesn't "fall" through-not as nervous. It has a built in seat for children that attaches magnetically to the lid. I found it online.


I could sit her down and show her books or iPad. She didn't like to sit very long and no success with actually "going". I didn't notice anything at all....but just the first day.

Funny story: baby bro is jealous of Asia's potty training:) He is so good at using the toilet if I take him (almost 19 mos old). He came into the bathroom and physically pushed me and Asia out saying "noooo potty!!" I guess he wants to be the one doing it:)

Day 2:  Thanksgiving day, we didn't make it every 30 minutes (too busy) but while we were at Grandma's for dinner she did say "potty" several times and I took her in. Nothing yet...but, I am noticing lots of  "dry" periods between trips.

Day 3: Same routine, trips to the bathroom-we will keep at it!

Day 4: Same thing again, put big girl "undies" on for a minute and she said "potty" -she knows what she is suppose to be doing:) I still haven't seen her "go" yet though...

Day 5: Bought her some new "undies", she needed a bigger size. Girl super hero's and princesses-she was pretty excited about them:) It was a really busy day. It is so hard to focus on potty training when there is so much going on. I know I didn't get her to the bathroom as much as I needed to today. I am so thankful for this little Angel, and all of the support I receive:)

School Day 1: I knew this would happen!!! Guess who only had one accident at school, wore big girl undies and actually used the potty a couple of times-yep, Asia! I didn't get to witness it! Kind of a bummer but I am so glad it happened. We are headed in a good direction. She wore pull ups on the way to school and on the way home. Her teacher and all her aides are awesome. I am sure they were right on top of this-it was use the potty or clean up after a accident. Asia was super grumpy after school today, I hope it is not stressing her out to much.


**Update-potty training is not going as hoped...she has gone one day at school a couple of times and I am now guessing it was just "perfect timing". She says "potty" all day long but, can never go when sitting on the toilet. I think she wants to be a big girl and use the toilet, she knows the "motions" but, she just can't figure it out. She knows the "prizes" I have offered if she does and makes reference to them but still nothing. With her low muscle tone, I wonder if she doesn't have the same kind of "control" or, maybe she doesn't have the "sense". We will keep at it until the end of the holiday break then we may lay off for a little while.**

Friday, November 15, 2013

Asia has been "spotlighted"!



I have to share that Asia has been "spotlighted" on another blog- This Little Miggy Stayed Home. It's a beautiful blog and she has a special section that spotlights a child with special needs. Today it was Asia! I am excited that we were able to participate and always happy to spread awareness on 2q23.1 Microdeletion Syndrome. I encourage you to visit her site-Thanks Miggy!

Monday, November 11, 2013

Asia's Neurologist Makes A Public Statement About Alepsia-CBD

I have to share a letter "we" received today from Asia's Neurologist. It is not directed to "me" but, in a way I guess you could said it is, because in the future it could most definitely be directed to me - more specifically Asia. It is pretty exciting...A few posts back I wrote about  Alepsia and CBD-with all the parent advocates this topic has exploded-this post is a continuation of that. Tomorrow we are attending something pretty big, along with many other parents of children with severe epilepsy-a meeting with the state that I will share more about later. I will advocate for any child that would benefit from this medicine-even if I found it something not suitable for Asia's condition, there are so many children that would have a improved quality of life with it. It could help these children who suffer so much-I will do what I can. Today, Asia's Neurologist made a public statement regarding Alepsia-and I'm going to share it:) He is the Director of Pediatric Neurology at the University of Utah. I hope that other pediatric hospitals and doctor's will take note. I think this was a bold and very respected move. I believe he sincerely has the children's best interest at heart. I encourage you to read this, it explains it all. Remember it is coming from a very well-known, well-respected and very experienced Pediatric Neurologist. Many thanks Dr. Filloux!



Sunday, November 10, 2013

Parent-Teacher Conferences

Usually I don't have parent teacher conferences with Asia and her teachers, this is because we have the yearly IEP's and we cover a lot of information in that meeting. The teacher usually asks "do you still want to come in for a parent teacher conference?". Both teacher and I thinking we didn't need to have one-I never did. I sound like a bad mom saying that out loud! This year the school office set up the appointments and I never really spoke to the teacher about it so I was "sure" let's do it. I have been DYING to share something-Asia has finally passed a "goal"!!!! It is going to seem so minor, so insignificant, almost a joke when I share what the goal was but, I actually got a little teary:) I don't know that Asia has ever passed one of her school goals, and they are not difficult. When she was in kindergarten I felt like some of her goals were a little to difficult for her situation and I actually changed them to very "easy" tasks. Even at very easy, she has never passed them. The goal was "Move 10 objects one at a time from the table to container".... I know I know easy but, she couldn't do it. This year the teacher said, Asia is now beyond this goal, she does it without even looking at the table sometimes! Yeah! I couldn't believe what I was hearing-a teacher has never said something like that. This is progress! A couple of the other goals that she has had for years now are "walk the length of a balance beam with support under one arm at least 4x per class session without stepping off the beam"-I asked her to change this with the PE coach. With Asia's disability I don't know if she will EVER get this goal. She is very unbalanced and uncoordinated so I don't want to set her up to fail. She physically may never be able to do this goal. Another goal we need to change is using stairs. "Walking up and walking down stairs while alternating feet and holding onto rail". We have stairs at home, our bedrooms are upstairs she uses them all day long. She also gets "stair practice" on the school bus twice a day. She's getting plenty of practice with this one and will get better at it in her own time...


Asia's teacher and bus drivers last week both happily reported how much "conversation" Asia has been provoking. This of course is in her own "unclear" use of language but, WOW! Love this kind of report. I myself have probably heard at least 2 or 3 new-fairly clear words this week. One of them being "eyeball"- (Halloween prop-that she repeated when I said look Asia it's a "eyeball"), and "Arthur" on her iPad being another. She is doing so great right now.

Sadly, last week I also got reports from the bus driver of Seizure activity and noticed some at home as well. It makes me wonder what I am missing during the day when I don't see her. Being epilepsy awareness month- I have just found a way to try and track her seizures and want to share, it is called Seizure Tracker. I wish I would have known about this a long time ago!! It would have helped so much for those doctor appointments when they ask frequency, medication, etc. When you go to the site you create a account, and from there you can log medication info, appointments, log seizures and so much more. You can also, print out graphs. This is a great tool! The most difficult part for me is really tracking these seizures. When she is at school all day long, I really have no idea if they are happening. The best I can do is ask the teachers to keep a eye out.

Here is the link: https://www.seizuretracker.com/

What's in store for you on Seizure Tracker  
 
Free and easy to use online anywhere. Click here to set up a new account.
Log and track seizure activity, appointments, and medication schedules through a simple calendar interface from your computer or mobile phone.
Download printable seizure logs that correspond to the website.
Customized reports which include graphs comparing seizure activity and medication dosages. View Sample Report
 

Tuesday, November 5, 2013

November is Epilepsy Awareness Month

        November is Epilepsy Awareness Month-It's time to get Seizure Smart.



Epilepsy affects my family everyday. Is Asia having a seizure? This is a constant "saying" in my home. We want to keep track for a few different reasons, to record how often it is happening, to make sure she doesn't get hurt and to monitor that "it" is not lasting to long. It's a tough activity to deal with. Of course I am going to spread the awareness this month and I hope many of you will as well! We want as much research as possible on a disorder that affects so many. There is so little known about epilepsy-there are so many types of seizures, and so many causes.This disorder causes struggle in day to day life, physical trauma, injures and takes lives. Treatments and cures are desperately needed.

Did you know?

Approximately 1 in 26 People in the US Will Develop Epilepsy at Some Point in their Lifetime.
  • 2+ Million Americans Have Epilepsy
  • 150,000Annual New Cases in the U.S.
  • 1 in 10 People Have Had a Seizure
  • 65 Million People Have Epilepsy Worldwide

A great resource for questions is the Epilepsy Foundation.
Link https://www.epilepsyfoundation.org/index.cfm

This year they are starting the "Now I Know" Campaign.

nowiknow_web

National Epilepsy Awareness Month

Introducing the "Now I Know" Video Campaign 

November is National Epilepsy Awareness Month!
As part of our mission to help overcome the challenges created by epilepsy, we're pleased to announce our Now I Know video campaign.
When it comes to epilepsy, what do you know now that you wish you knew sooner?
People with epilepsy and their friends, family and caregivers have until January 15, 2013 to log on to Facebook.com/EpilepsyFoundationOfAmerica to submit a short video sharing their experiences.
Visitors to our Facebook page will have the opportunity to vote for their favorites and share the videos through their social networks. At the end of the contest, the videos with the most votes in each of four regions, will win iPads, among other prizes.
Select videos may also be featured here on our website and at our National Walk for Epilepsy in Washington, DC. We hope to pool the collective knowledge of the epilepsy community into an easy-to-use resource and to serve as a jump-start point for talking about the disorder with our communities.
Submit your video today to our Now I Know! Facebook app.
Official Contest Rules

Link:  https://www.epilepsyfoundation.org/getinvolved/neam/


 For the state of Utah.

Tomorrow at all Utah Chili's Locations-The flier says the city of Layton but, as far as we understand it's all locations. Copy and print this flier then present it at Chili's with your meal. They will donate 15% to the Epilepsy Association of Utah.





 

Thursday, October 24, 2013

Epilepsy Awareness Day at Disneyland 2013

 
November will be Epilepsy Awareness Month-this event is coming up quick!
 
I have always wanted to bring Asia to Disneyland...First, because she loves rides:) She loves a ride that will take her really fast and high into the air. She smiles and giggles the whole time. I think she would absolutely love Disneyland. She loves watching Disney on TV and when she says she wants to go to the "mall" she really means she wants to go to the "Disney Store" in the mall. She gets mad when we go into a different store for shopping because she only has 1 place she wants to go! It is very difficult to go anywhere with her and my other kids. She requires so much attention and I have a toddler-which also requires a lot of attention. I often considered going because Disney had a great policy for people with Disabilities- being able to avoid the long lines. Asia would definitely not be able to handle those long lines, she tires so easily. This privilege was being abused by so many that Disney had to change the policy. They now have a "new" policy. They will still be accommodating but plan ahead. Click this link below for all of the details.
Links for Disney Parks Disability Access Service Card Fact Sheet

I don't think we will be able to go this year but, if there was ever a good time to go it would be this day! Disneyland sponsored-Epilepsy day at Disney-November 7,2013 We want Disneyland to be covered in purple to bring awareness to this disorder that affects 1:26 people.

About The Event

Where: Disneyland Resort Anaheim California
When: November 7th, 2013
Who: people of all ages with epilepsy, their families and friends, and those whose lives are touched by epilepsy or want to raise awareness for epilepsy
What’s included: entrance to Disneyland, official Disney character purple event shirt and limited edition event tote bag with information and gifts
Season Passport Holders can obtain a “participant pack” which includes event gift bag and shirt
Benefits: Each ticket or participant pack purchase will include a $5 donation to one of the participating non-profit epilepsy related groups

A couple of FAQ's

What do I get with my ticket purchase?
The purchase of your ticket includes a full day entrance to Disneyland’s Magic Kingdom park (that’s the main park. Entrance to California Adventures is not included, sorry!), as well as a Participant Pack which contains a limited edition purple event shirt featuring a Disney character, and an event bag!

What is this about a Participant Pack? Do I need to have one? Can I just come to Disneyland that day without purchasing a Participant Pack?
The Participant Pack is a really neat SWAG Bag (Stuff We Always Get) of goodies prepared just for Epilepsy Awareness Day at Disneyland Resort 2013! It contains a limited edition Epilepsy Awareness Day purple T-shirt and tote bag which can only be obtained by purchasing the participant pack. They will not be sold anywhere else! In addition, the Participant Pack will be full of all sorts of helpful information about Epilepsy. Do you need one to participate? Absolutely not. However, by purchasing the pack, you will be helping to increase our funds which will go to support epilepsy research and awareness. Plus, you’ll look super fly in that purple shirt ;)
 
This all sounds great! How much does it cost to attend Epilepsy Awareness Day at Disneyland, and where can I get my ticket?
Entrance to the park on Epilepsy Awareness Day will cost the same as a regular adult single-day, single-park ticket: $92. Tickets can be purchased from our Store page.
 
Link for EADDL2013 Site purchase tickets and Participant Packs here. Remember to get participant packs for everyone-so you can all be wearing the official purple shirt:) For more questions please visit site!

Saturday, October 19, 2013

CBD, Cannabis, Alepsia, Medicinal Marijuana

So, here is a topic that is controversial and highly misunderstood. But, who am I not to bring up a controversial topic:) I have to mention how this came about. One of my sweet, little elderly neighbors called me and my husband early one morning. She said "You have to watch this CNN documentary that I saw last night on CNN it is called W-E-E-D", as she spelled out weed for us:) She thought of our sweet daughter and really felt inspired to tell us to watch this show. My husband took the phone call and I think his jaw fell to the floor-"Um, you know that is illegal... right? We can't even get it." He felt like he was "dreaming", there is no way she just called me to talk about weed! We kind of chuckled and even told some friends she had called. Our first reaction was-what? We would never give our child marijuana! My initial reaction was to think of giving my child a "joint" and how wrong that idea is. I would never. She wasn't the only one to tell us to watch this documentary. So my hubs, the researcher that he is-went to town:)

A couple of things, before we even have this conversation you have to watch the video-Dr. Sanjay Gupta's WEED documentary. The same one everyone was telling us to watch. Dr. Sanjay Gupta is the Emmy®-award winning chief medical correspondent for the Health, Medical & Wellness unit at CNN. If you haven't seen it, I am sorry it's almost 45minutes long and you may be thinking you don't have that much time! If you want to understand this post and become a little more educated on the subject, make some time available:) If you have a child with serious medical conditions you may want know what this is. It may even affect your life or the life of other's you know someday. This is going to be talked about a lot in the medical field. As we understand it, it is already becoming a large study in medical schools.  Second, I want you to know that I would NEVER advocate anything for my child that I thought would send her down a destructive lifestyle. I have seen first hand the negative effects that "pot" can have on teenagers and families. What I am bringing up is not getting my daughter "high". Please watch.   (So the cable news network removed this video from youtube-due to copyright:) Here is a link to a different source.

http://www.youtube.com/watch?v=vyf-ffoatHg




This video is actually hard for me to watch. It reminds me of what Asia has gone through, the look on Charlotte's face when she has a seizure is the same as Asia's-especially in the early stages. It brings up so many emotions. You watch them, just waiting for it to all stop. I keep wanting to write about ages 2-4yrs for her but, it brings up to many painful memories. Those were some of the hardest times in our lives. Asia at one point went a full week with non-stop seizures. Every few seconds she would seize-an entire week! How many is that a day? She stopped eating and drinking I think in fear of choking. I could barely feed her because she would seize in the middle of a bite-it's a horrible thing.

A couple of summaries: The Cannabis plant has hundreds of ingredients. The two we are most interested in are the THC and the CBD ingredients. THC is the one that causes a "high". CBD is the one that is proving to be more "medicinal" and a anticonvulsant. There are hundreds of strains of Cannabis. What Realm of Caring has done is create a hybrid plant that is a very low dose THC plant (Charlotte's Web or Alepsia in Utah). Recent testing has shown a .3% THC ratio-seriously, there is more THC in the Hemp oil you buy at the grocery stores. What if? What if this stuff really works. This is a medicine that is derived from a plant vs. synthetically manufactured. This is a medicine that as far as we know, has virtually no side effects, or at least harmful ones. This is a medicine that you can not over dose on. This is a medicine that could stop my child's seizures and allow her to have a life. Given to her as a simple capsule or liquid drops. They mention "Dravet Syndrome", this wouldn't be a medicine just for Dravet.

This is what I give my baby everyday. Some of them are vitamins-one's we have found to be beneficial for her seizures. There has been another prescription that we took her off of and I don't even know how many times her dosages with that and these have changed. She still has seizures. We are on a good streak right now, I haven't noticed them for a couple months-probably a record. It doesn't mean she isn't having them, I just haven't noticed them.


There are questions about side-effects of cannabis and long term use. Have you really ever researched the medication your on? This is a description of what she takes right now.

Topamax
  • Used with other drugs to treat partial or generalized tonic-clonic seizures
  • Side effects include sleepiness, dizziness, speech problems, nervousness, memory problems, visions problems, weight loss. (This is all she needs is additional problems with speech, memory and weight)
Depakote (here we go)

This medication has rarely caused serious (sometimes fatal) liver problems. Children less than 2 years old are more likely to develop severe liver problems, especially if they have metabolic problems, severe seizures with mental retardation, brain disease (organic) or if they take more than one drug for seizures. If divalproex sodium is being used in patients with these conditions, then it should not be taken with additional anti-seizure medications. Liver function tests should be performed before and during treatment.
Early signs of serious liver problems include vomiting, unusual tiredness, swelling of the face or loss of seizure control in patients with seizure disorder. Tell your doctor immediately if you develop any of these symptoms.This medication has rarely caused severe (sometimes fatal) disease of the pancreas (pancreatitis). This problem may occur at any time during therapy and may worsen quickly. Tell your doctor immediately if you experience stomach/abdominal pain, nausea, vomiting, and loss of appetite while taking this medication.Taking this medication during pregnancy can cause birth defects and may lower your child's IQ. Women of childbearing age should discuss the risks and benefits of this medication, other treatment options, and use of reliable forms of birth control with their doctor. If you are planning pregnancy, become pregnant, or think you may be pregnant, immediately talk to your doctor. If you are taking divalproex sodium only to prevent migraine headaches, this medication must not be used during pregnancy. If you are taking divalproex sodium to treat seizures or mental/mood disorders, do not stop taking this medication unless directed by your doctor. Untreated seizures and mental/mood disorders are serious conditions that can harm both a pregnant woman and her unborn baby.
Diarrhea, dizziness, drowsiness, hair loss, blurred/double vision, change in menstrual periods, ringing in the ears, shakiness (tremor), unsteadiness, weight changes may occur. If any of these effects persist or worsen, notify your doctor or pharmacist promptly.You may rarely see partial tablets in your stool. This may occur if you have certain intestinal disorders (such as ileostomy, colostomy). Tell your doctor right away if you see partial tablets in your stool.Tell your doctor immediately if any of these serious side effects occur: signs of infection (e.g., fever, persistent sore throat).Tell your doctor immediately if any of these unlikely but serious side effects occur: chest pain, easy bruising/unexplained bleeding, fast/slow/irregular heartbeat, swelling of hands/feet, uncontrolled eye movement (nystagmus), feeling cold/shivering, rapid breathing, loss of consciousness.A small number of people who take anticonvulsants for any condition (such as seizure, bipolar disorder, pain) may experience depression, suicidal thoughts/attempts, or other mental/mood problems, behavior including signs of depression, suicidal thoughts/attempts, thoughts about harming yourself. dark urine, persistent nausea/vomiting, severe stomach/abdominal pain, yellowing eyes or skin. Severe (sometimes fatal) brain disorder (encephalopathy) has rarely occurred, particularly in patients with certain metabolic disorders (urea cycle disorders). Tell your doctor immediately if you develop unexplained weakness, vomiting, or sudden mental/mood changes (such as confusion).A serious allergic reaction to this drug is unlikely, but seek immediate medical attention if it occurs. Symptoms of a serious allergic reaction include: rash, itching/swelling (especially of the face/tongue/throat), severe dizziness, trouble breathing.This is not a complete list of possible side effects. If you notice other effects not listed above, contact your doctor or pharmacist. Symptoms of overdose may include: excessive drowsiness, coma, irregular/slowed/skipped heart beats (heart block).

Seriously-this vs. virtually no side effects, what would you want? This is only two of the many medications prescribed for epilepsy. Some of them have worse possible side effects than these. Some can actually cause brain damage. I would love to list them but this post is already getting lengthy.

I wont even get into ingredients-There are concerns about how the CBD is extracted from the plant. What solvents are used and are they harmful. Have you looked at the ingredients in some of the medications that are prescribed for children? I doubt it could be any worse.

I am not concerned about my child becoming addicted to CBD. What is the difference between that and the meds she is already on? If I ever wanted to take her off of the prescriptions she is on, she would go through a weaning process, her body is "addicted" to her prescriptions. Fear of Abuse? If it is not giving a "high" I cant see the abuse. Prescription medications are abused everyday.

People are also bringing up the argument that hybrids can also be created to be even higher in THC, you know what? I have no concern with that, those plants are not my focus here.

The first formal report of cannabis as a medicine appeared in China nearly 5000 years ago. Queen Victoria's personal physician wrote (Reynolds, 1890), on the basis of more than 30 years' experience, that “Indian hemp, when pure and administered carefully, is one of the most valuable medicines we possess. He found it impressive in clonic spasms and certain epileptiform convulsions related to brain damage." Families are actually packing up and moving to Colorado just for the chance to get on a waiting list to take part in something that may change their child's life. They are all worth it and you would do anything as a parent. It is sad that something like this has been taken away from us for decades. Charlotte has given so many parent's hope-it is a beautiful story. To watch your baby live such a hard life, not to play and be a child but tortured every day-you would do anything to make it stop, and I am not seeing a problem with this type of alternative medicine. This is a miracle for parents, a answer to prayers. I do fully believe that more studies should be allowed. I want the medical field to learn more about this plant. There is a lot more that can be researched. Another problem I see is going to be availability and price. If I was able to start it, I would need to make sure I could keep it going. I don't know about you but I don't have the funds to pay thousands of dollars a month to get it. We need to have the option though, it shouldn't be kept from us- that is a first step.

What can be done?

Alepsia is not a cure, but it is a legitimate treatment.  It's frustrating and sad that we cannot help our children with it because it is not legal for us to do so. Utah has the opportunity to be innovative in its approach to this legislation. Hopefully this year!:) Because it has such low traces of THC we may not need a bill. We just need a green light to administer it without the fear of prosecution. I hope for a positive response from the community, as well as the assistance of experts and our bill sponsor. Please educate others and spread the word, share my link. We need the support and awareness of what this really is and who it benefits. We just want to help the children who need this medicine.

I am adding a couple more links.

Link for debate with Dr. Sanjay/Piers Morgan
Link for the Realm of Caring Foundation
Link: Charlotte and Zaki's Journey
Link for Jason and Jaydens Journey FB
Link for The Drs TV show: watch all segments
Drs segment 2
Link for a history of medicinal use.

Tuesday, October 8, 2013

Artilepsy

I want to share this event that will be happening at the U of U Clinical Neurosciences Center. It involves so many that are effected by epilepsy. I am just hearing about this and don't know if I will have time to create anything of my own, have Asia or anyone else in my family-but maybe next year.  Maybe you will want to enter, it doesn't mention it in the info but I believe there will be judging and winner's announced!

Artilepsy

The Epilepsy Association of Utah and the University of Utah Clinical Neurosciences Center present Artilepsy, an exhibition of original artwork, photography and home crafts by people of all ages living with Epilepsy. This evening illustrates the profound effect that epilepsy can have on human life and the courage, humor and imagination many show in facing it.

How to enter: Link for entry information
Like it on FB: Link for Artilepsy on Face Book

All 2012 Entries Due by Friday, Oct 26

View the Exhibit

Nov. 2nd - Nov. 30, 8:00 AM - 5:00 PM

The gallery is free of charge and open to the public.  
Location & Parking

Clinical Neurosciences Center
University of Utah
175 N Medical Drive East
Salt Lake City, UT 84132

Free parking is available in the parking terrace across the street.
Custom Map & Directions


About
Epilepsy Association of Utah

Provides education and support services for individuals and families dealing with the many challenges of epilepsy. Visit epilepsyut.org for more information.

Clinical Neurosciences Center

The Clinical Neurosciences Center is the tertiary referral center for the Intermountain West, spanning five states and beyond.  Our multi-disciplinary care team–compiled of sub-specialists in neurosurgery, neurology and neuroradiology–work seamlessly to provide the most up-to-date care for patients with diseases and disorders of the brain, spine and nervous system.  Visit utahneurosciences.com to learn more about our services.

Wednesday, October 2, 2013

Upper Cervical Chiropractic/Guest Post!

Last year I had members of my extended family going in for treatments to a Upper Cervical Chiropractor. I kept hearing about the amazing results they were seeing in their physical well-being. I am not a huge fan of going into a typical "Chiropractor" who pops and cracks your spine so I never really had a desire. I kept hearing that I should go in and I should bring Asia in with me because she (the Dr.) loves helping children. Well needless to say I finally did and brought Asia as well. My husband brought Asia in the first time. She has been in for appointments about 4 times now over the last several months. It may be that Asia has had a good few months or...that this has really been doing something for her health. I haven't been noticing Seizures, fairly good mood and she has been eating really well. So what is it, right? This is a specialty within the Chiropractic profession. It has it's own special and very gentle techniques. It's purpose is to reposition the weight of the head over the center of the neck to remove brain stem compression and restore body balance. This re-positioning reactivates the transmission of healing messages from the brain to the affected part of the body so the body's natural healing process can begin. The imbalance can cause stress, tension and pressure around the brain stem. With Asia's seizures I thought that this could really help. The Dr. analyzes how far the atlas bone has shifted, tilted or rotated from it's normal position. Then with a very gentle adjustment behind the ear the Dr. corrects this imbalance. You would never even guess that she was doing anything at all!

When we first went in, the Dr. had us stand on a some scales to see if our body was imbalanced. When the atlas is misaligned it can cause a imbalance in your body, a raised hip, a short leg and one side of your body weighing more then the other. This was true with Asia and myself. I don't remember the exact amounts on Asia but for myself, one side of my body weighed 10 pounds more then the other! My husband had a 27 pound difference. As of my appointment Monday I am "balanced":) I can tell you also that I can really tell, I feel balanced.


When working with Asia, on her first Visit the Dr. massaged one side of her head, the next visit was the opposite side and then on the 3rd visit she worked both sides a little. This was not to overload Asia.


 

Body imbalance can cause such conditions as Seizures, development problems, digestive problems, migraines, allergies, ear infections, acid reflux, ADD, fevers and more.

About The Doctor and Her Post:

Hello to every child, brother, sister, mom and dad out there.  Yes, I do take care of the whole family and love it.  Since my mission is to help as many people as possible in my lifetime...especially children that would include the whole family.  I want to be real here and tell you how awesome it is to help the children in our lives.  They are the ones that are making a change in the next generation and I would love the idea of those babies and children being effected by me and my passion to help their bodies prevent problems in their lives.

If you ever see me in the store, church or out and about please don't hesitate to talk to me.  I am human just like you and want to answer any questions you may have.

I have two beautiful naturally birthed, unvaccinated, curious, intelligent teenage boys with the trials and tribulations as your teens do.  They are the light of my life and support me in everything I do and vice versa.

I have been married for 13 years to my soul mate Jeff and love riding with him on the Harley! (Yes, a Harley girl).

Thank you for reading about me and please don't hesitate to call.

My Mission is to help as many people in my lifetime as I can – especially children

Being an Upper Cervical Chiropractor my main focus is what is that brain stem going through.  What kind of pressure is being put on it, how is it functioning being surrounded by the first bone in the neck called Atlas or C1.
With all the traumas and injuries that we sustain in life, those injuries will break loose the connective tissue that holds us very strong and upright.  When we receive those traumas the first area to break down is the Atlas area, just because it is unlike any other bone in the body, and it is protecting that brain stem.
All babies, and children have spines just like adults, and as we are all coming through the birth canal  as well as being delivered, it is very traumatic and can disrupt the alignment of that first bone (Atlas).  
Any pressure upon that brain stem will disrupt the communication from the brain to the body.  It is like a computer central command center.  Symptoms that might evolve due to this disruption is: Seizures, Torticollis, Ear Infections, Sinus Infections, Colic, Acid Reflux, Trouble Latching during Breastfeeding, constipation, Diarrhea and many others.

I use a gentle adjustment with no popping, twisting or pulling on the neck.  Moms can be worry free when their child is getting their spine in alignment!

--
Dr. Ashleigh Stockwell Street
239 W. 520 N. 
Orem, UT 84057
801-224-1121

For more information here are a couple of links. Thanks Ashleigh!
 
 

Tuesday, October 1, 2013

October is Down Syndrome Awareness Month

I'm spreading the awareness that October is Down Syndrome Awareness Month. It is said that 6,000 babies are born every year in the US with Down Syndrome or (Trisomy 21). This is about 1 of every 691 babies born in the United States each year. Down Syndrome is caused by a extra copy of the 21st chromosome. A lot of people have heard of Down Syndrome and chances are they know someone with Down Syndrome but, often they don't really know what it is or really what it means for a family affected. There is a lot of great info on the NDSS (National Down Syndrome Society) website.
This link gives a lot of resources to learn more about how to support those with Down Syndrome.
NDSS-link for the National Down Syndrome Society Even though October is the official month for the Awareness, there is always local events, activities, and support being offered year round. The NDSS is also very active when it comes to social media-check out the info below...

NDSS is active on several social media outlets year-round, and Down Syndrome Awareness Month is an especially good time to follow and share! In addition to our regular social media activity, here are some bright spots to keep an eye on this month:
- See more at: http://www.ndss.org/About-NDSS/Newsroom/Recent-News/Down-Syndrome-Awareness-Month-2013/#sthash.s6gHgje6.dpuf

And now I have to share a photo of my bff's little girl and her cousin-I've shared it before but they are so cute and it may become a tradition this time of year. Spread the awareness!

Wednesday, September 25, 2013

Barbies and Baby Dolls

So today I found myself having a "moment"-I started packing up some of Asia's toys to donate...old Barbie dolls she never played with, some dress-ups she hardly used, a baby doll swing along with other items. I also found myself cleaning out her dresser a little and taking out the size 2T big girl Elmo undies that would never fit now. It's kind of a hard thing to realize she has never had much interest in the things that little girl would normally be interested in (Barbie's and Babies). I felt like I was "burying" her childhood and she hasn't experienced it yet.  If one day she wants to play with Barbie's-I will buy her new Barbie's:). It was kind of hard on me-it felt weird. She is 7yrs old-I'm not ready for her to be a "big girl" because she hasn't experienced being a "little girl" yet. Reality is that she is different and unique. It really isn't that important that she doesn't "play" the same as other kids just difficult to swallow sometimes. By tossing out old toys that never got used and underwear because she is not potty trained even today I am facing reality and moving on. I can remember one time she wanted a baby doll in the car and it was a little unusual for her so I took pics on my phone-it was so cute. Before bed tonight I dug out one of her old stuffed animals, a lion she called "Pa Pa" just to get her a "toy" and see if she would respond. She was actually excited to see him and said "Nigh Nigh Pa Pa". Then wanted her "book, book" (a flaghouse magazine) and snuggled into bed. I guess if a magazine brings her joy and comfort I should not complain, right?:)

Saturday, September 21, 2013

Dollhouse Festival and Boutique-Utah



Dates: September 26, 27 & 28 2013 Provo City Library

Thurs., Sept. 26: 6 – 9 pm   Masquerade Ball-Dinner, Entertainment and Silent Auction
Cost: $100 a person
(includes dinner catered by Chef’s Table)
Location: Historic Provo Library, 500 N. University Avenue, Provo, Utah
Click here to purchase tickets

Fri., Sept 27 & Sat. Sept 28-Boutique & Children's Boutique- 10am-8pm Fri. & 10am-5pm Sat.

Sat., Sept. 28  at 2pm-  Mad Hatter's Tea Party for Boys & Girls.  Storytelling, parade, games, treats and prizes!  "Wear your favorite hat."  Tickets must be purchased in advanced. Click here for tickets

Click here for more event information

If you are a Utah Valley Local you may have seen signs posted about the Dollhouse Festival. I think I have seen or noticed these signs for years but, I had no idea what it was for! I guess I kind of assumed it was kind of a "toy show"-right? It is far different than that. I almost feel bad that I have never looked into because, it is a advocate for physically and sexually abused children and such a great cause. That is why I am sharing because maybe you too-haven't realized what this organization is.

When child abuse occurs-the CJC is usually the first place the child will go, instead of a police station. It is more comfortable for the child-they want them to feel safe so they can openly talk about the abuse. The CJC can provide all the necessary services-medical examines, crisis intervention, investigation and counseling services- in an effort to fully meet the needs of abused children and their families. Please be aware of them, they are always looking for volunteers-they provide so many services for these children-visit their site, or more importantly check out the events next week.
Link for the Children's Justice Center Website

In 1992 a group of women started The Teddy Bear Project-they made and donated teddy bears to the Provo Fire Department-they had so many that it shifted to the Children's Justice Center (CJC). Even now there are 50-90 teddy bears donated each month. Each child selects their own bear following the abuse investigation and interview. The importance of the teddy bear is to symbolize that someone is there to listen and care. In 1999 The Dollhouse Festival began-to benefit the CJC. This is a all volunteer, non-profit organization that raises funds for the CJC. You can attends the events- or donate items to be sold at the boutique (items must be collected by the 23rd). If you’d like to donate any items contact Brittany at brittany.ratelle@gmail.com Masquerade ball, dinner and auction the 26th, yes-there will be Dollhouses for auction!  Friday and Saturday shop the boutique and let your little ones shop the children's boutique. Saturday let your children attend the Mad Hatters Tea Party. See links and info above.

The events all sound fun to me-I would love to go to a Masquerade Ball (never have), shopping all the cool local handmade gifts, and kids would have a blast at the tea party...all for a great charity which is really the most important part. I think we all have someone in our lives that have gone through such tragic events, what these children endure can hit close to home. I encourage you to visit their site and see what they are all about. I will definitely watch for these events next year!



New Look

I find myself getting bored with the appearance of my websites-I may change the look here and there. All content is still here-just updated:)

Thursday, September 19, 2013

Asia gets a bike!



This video is kind of long...sorry 2 minutes. I have to share-Asia received a special gift! We are part of a couple local organizations for families with children who have special needs. One of those organizations assist children with things that insurance wont cover but, can improve their lives. Asia loves the bike in her PT lessons, her therapist thought that Asia would benefit from a bike. She loves it, it would get her the physical therapy she needs and she could feel like "one of the kids." So, we put in a request with our amazing organization and it was approved! We ordered green so we can re-gift it to a child when she grows out of it. We took her on a long bike ride and she loved every minute-especially when she could go fast and crazy:) We can't be any more grateful-these are not cheap and feel very lucky. Yay Asia! It's definately something to make her smile.

Random Comments

Today I have had a couple of comments from people that have really stuck with me. First, I went to the pharmacy to pick up Asia's medicine refills and working behind the counter was a pharmacist I haven't seen before. I want to say he was "new" because he was really friendly and seemed like he was going out of his way to make conversation. This was really great except the awkward comment he made. He asked me how the medicine was working for Asia. The meds I was picking up were two different types of seizure medication. I said "they are OK, she still has seizures but not as frequent." He awkwardly said "oh I guess that's better" and I just didn't have anything to say back. It has stuck with me all day because is it better? Even one, just one short unnoticeable, not injuring seizure is not better. There is a obvious answer that "yes", it's better to have a couple seizures during the day then seizures all day long. Better would be no seizures-ever. We were told Asia has to go 2 years with out a seizure to have a good status. You would think after watching her have seizures for 5 years it would get easier. It doesn't! If you have ever watch a child have a seizure-there are different severity's of the seizures that can cause a different reaction in you but, it never gets any easier. You are helpless while they looked tortured. It is never easy. Every time you wonder if it is taking something away from her-her knowledge and skills. She can not talk so I don't know what she feels or senses before, during and after. Is there pain? Confusion? Headaches? You would also think that after 5 years they would be controlled after trying different doses of medication after medication and supplements. I guess my response now to him would be-"it'll be better when she doesn't have them at all."

Second comment came from a amazing neighbor who has two children with special needs of her own. I have been considering taking Asia out of her private speech therapy lessons. I brought this up to her and she told be about one of her children's therapist. She had a therapist when she had her kids in intense therapy that said "you need to decide what is best for your family, if you need a break-take a break". Asia gets speech at school but every lesson we have out of school is a nightmare! Her therapist tries to get her to "talk" or "sign" and she throws the biggest fits-last time she was kicking him. She would probably do better if I or her Dad didn't have to be in the same room but the facility doesn't allow it-we are not allowed to leave her alone. I don't know if these 1 hour lessons every other week is doing anything. I am starting to believe the only way to do therapy is intensely-more frequent with longer lessons. I did get in trouble last lesson because we took a lot of the summer "off" and he told me if I didn't stick with the program they wouldn't have her in it-yikes, I felt like I was in trouble in high school or something. Yes, I need to be diligent but even with diligence I don't see her improving or changing her behavior. I think she may need a break-no set time frame just to let her be her and let us be the way we are. I think we allow so many people guide our lives because we are continually looking for anything to "help", that we kind of get wrapped up in how things "should be". Asia gets so much therapy and really, she will learn to do things in her own time. Therapy may or may not expedite her skills-if she gets that upset during the session I cant imagine that it is helping her....so I think we are going to take a break:)

Friday, September 6, 2013

Asia at the carnival



Asia is sensation seeking and loves carnival rides-the big ones. One of Asia's favorite things to do! It's a face of sheer bliss:)  She also loves to watch this video over and over and over...

**I have tried to figure out a way to eliminate the ads at the end but I can't, sorry-some may not be appropriate-I am not that great with youtube yet**

"Chewy" Friendship Bracelet

This summer on one of our "adventures" we stopped by a Fremont Indian Museum. While we were there, I bought all of us a few of the knotted and beaded friendship bracelets. I noticed that Asia was chewing on hers all of the time. I kind of thought "that is cool" because it kept her from chewing on her arm and clothing. I decided I would try and make some for her. I thought since she was "chewing" on it I might as well try and find some "organic" embroidery floss. I discovered that it is seriously hard to find! I found two different shops on Etsy and ordered some from each just to compare. One shop is located in the UK and the other in the US. Here is my first attempt at making her one (its not perfect)...I might make the next one a little wider and order some darker colors. Maybe practice some new pattern skills:) The cost is low and I can easily make more when needed. When she saw it she asked me to put it on her-she started chewing on it within seconds of putting it on her arm. I don't know how long it will last or if it's very good for her to chew on but, I figure it can be any worse then her shirt and it protects her arm!

Monday, August 26, 2013

Constipation Treatment

So everyone knows our struggles with Asia and constipation. I want to share this product because it has been amazing! This is all I give her right now-once a day 3/4 of a tsp. I worked her up to this dose over a couple of weeks but it is keeping her regular. I hope her body doesn't get "use" to it. For children 3mos and older, keep in fridge and I purchased mine at the local health food store.
RAW Whole Food Dietary Supplement

• Supports Digestive Healthy and Immune Health*
• RAW 
• Vegetarian
• Non-Dairy
• Gluten Free
Supplement Facts
Serving Size: 3/4 teaspoon (1.6 g)
Servings per Container: Approximately 60

Amount per Serving
RAW Organic Fruit & Veggie Prebiotic Blend 1.52 g
- Inulin, Banana (fruit), Strawberry (fruit), Cherry (fruit), Blackberry (fruit), Bluberry (fruit), Raspberry (fruit), Beet Juice (root), Carrot Juice (root), Spinach Juice (leaf), Broccoli Juice (flower & stem), Tomato Juice (fruit), Kale Juice (leaf), Red Cabbage Juice (leaf), Parsley Juice (leaf), Brussels Sprout Juice (leaf), Green Bell Pepper Juice (fruit), Cucumber Juice (gourd), Celery Juice (stalk), Garlic Juice (bulb), Ginger Juice (root), Green Onion Juice (bulb), Cauliflower Juice (flower & stem), Asparagus Juice (flower & stem)




Probiotic Blend 81 mg
- Lactobacillus gasseri, Lactobacillus plantarum, Bifidobacterium lactis, Lactobacillus casei, Lactobacillus acidophilus
- Total Cultures 5 Billion CFU
Active Ingredients:


Asparagus
Bifidobacterium lactis
Blackberry
Blueberry
Broccoli
Brussels Sprout
Carrot
Cauliflower
Celery (Apium graveolens)
Cucumber
Garlic (allium sativum)
Ginger (Zingiber officinale)
Green Pepper (green bell pepper)
Inulin
Kale
Lactobacillus acidophilus
Lactobacillus gasseri
Lactobacillus plantarum
Onion
Parsley
Raspberry
Red Cabbage
Spinach
Strawberry
Tomato
Inactive Ingredients:
Banana, Beet

7yr old pic!

I may change this pic as her main "7yr" picture but, so far it's one of the better ones. Two photo shoots, two crowns of flowers and only a couple good images-she is so difficult. She cried, would bite her arm, lay down, rip the flowers out of her hair over and over again-lots of fun but worth it to get one picture:) I am going to add a series of her "tantrums" to this but I need to organize them first:)



Wednesday, August 21, 2013

Conversation with Asia

It's really hard to describe to people how Asia is pretty much Non-verbal but has a "handful" of words. A lot of the words she says are not that clear to people unless they have been around her a lot. I am going to share two videos (on you tube) I took after I got her off of the school bus-she tries so hard to tell me things and have a conversation-it's one of the best times of day to get a little bit out of her. Even though our conversations are almost always the same thing:) She is so cute! I really kind of like the idea of posting videos.  I like to share her behavior-I may do more! Click the links below.
I would have just put the video here but it failed to download...

Sunday, August 18, 2013

Playtime...argh!

I have been so busy with work I haven't had much time for posting...but, I am so ready for back to school! This is part of the reason why. Asia finished summer school and has been home for the last couple of weeks. Asia doesn't really "play". She doesn't play dolls, games, with friends, not much interest in coloring etc. She can't sit still for very long so even sitting and trying to assist her with something doesn't last long. This is one of the most difficult things for me because I feel like she is missing out on her childhood:( It's like she just doesn't "get it". She loves to watch other children play. At Grandma's she likes to stand in the window and watch while everyone else is outside playing and she honestly has a great time. She loves watching her brothers play with toys and will even offer toys to the baby to play with-which is cute, she just doesn't want to be involved. I am so embarrassed to show off my messy house but what I am getting to is, the pictures below demonstrate what Asia does when she is "playing". It only takes her a couple of hours to move through the house (and outside) and completely destroy the place-it's one of her favorite things to do. She is very destructive. She loves a clean room or a tidy closet-just to mess it up! If I send her to her room to play she empties out her dresser, takes all of the books off of the bookshelf and all the toys from the bins. She moves through the house empting cupboards, closets, dresser drawers-Argh! She takes stuff from one room and moves it to another. I am so done with it and can't wait for her to get out of the house for school:) I love her but, I am ready for a break and a clean house. I have given up for the last couple of weeks on even trying to keep things straight. When she is at school maybe I can clean up and it will stay clean for a few hours during the day-3 more days!
Asia's version of "playing"...Yes, all within a couple hours.