Baby Steps

Thursday, October 30, 2014

November Epilepsy Fundraiser





November is national epilepsy awareness month and my goal this year is to raise money for the Epilepsy foundation to help fund research. These donations will also help a new project called the Rare Epilepsy Network whose goal is to expedite research into the rare epilepsies including Aicardi syndrome. The project will collect data, improve treatments, provide a better quality of life for people with rare epilepsy like our daughter Piper. There is no cure for Epilepsy but there is so much more research that can be done into treatments, improving quality of care and educating the public. Every penny counts!

To read more about the project follow the link below







 To learn more about Aicardi Syndrome and Piper follow the link below 

 How can you help?




For the month of November I will be donating half of my profits from my Rodan and Fields business commission to the Epilepsy Foundation. As a consultant with Rodan and Fields I have been able to provide clients with products that truly change skin and change lives. We have products that target sun damage, Anti-aging, sensitive skin and acne. The regimens are a multi-med therapy that work best in a specific order and when used together. The products are clinical strength and heal simple to complex skin conditions with a 60 day money back guarantee. To view our products please follow the link below
https://akoozer.myrandf.com/

To find out what regimen is best for you take a 30 second quiz to find out. Click this link
Solution Tool 

Your purchase will not only change your skin but you will help change the lives of people living with epilepsy! Please contact me with questions at 
YourRodanFields@gmail.com.

Friday, October 3, 2014

More tough decisions

Fall used to be my favorite time of year. My birthday, the leaves changing colors, football, a crisp to the air, pumpkins, and the fun fall activites. Since Piper was born fall has become a season we dread because the memories are so painful. Piper had her first seizure on October 15, 2011. It's a date we will never forget as hard as we try to. We spent Piper's first Thanksgiving in the hospital. Her first  Christmas was filled with hundreds of terrible seizures. These are the times most young families are making precious memories and enjoying first moments with their child.

October is here once again and with it brings bad news and difficult decisions. Decisions that no young parent (or anyone for that matter) should have to make for their child. We should be enjoying this time of year with both of our children but we are forced to put all of our energy (which isn't much) into figuring our what to do next. Our spirits are low and we are both physically, mentally and emotionally exhausted.

Since we moved to Colorado all of our efforts have been focused on cannabis oil, seizure control, advocating and educating. It has by far been more than a blessing. This plant has helped so much with seizure control, alertness and awareness. Unfortunately with all of our focus on seizure control, many of the other terrible things that can occur with Aicardi syndrome have been put on the back burner. We prayed and hoped we wouldn't have to deal with these issues but now they are here and we have to figure out our plan of action.

Sabril is the only pharmaceutical that has ever helped Piper's seizures. It comes with a cost, the risk of vision loss. When we first started this medication, seizures were so bad that we decided that seizure control trumped vision loss. We didn't have a choice.  She has been on this medication for almost 3 years with no signs of damage to her eyes...until now. She is seen by an Ophthalmologist every 3 months for this very reason, to look for changes in her vision. We got the news yesterday at her appointment that there are changes in her peripheral pigmentation which means the medicine has started affecting her vision. We have always known this could happen but just prayed it wouldn't happen to her. We are faced with some difficult decisions that will affect her life forever. We will have to try and get her off this drug so the damage to her eyes does not continue. The scary part is we could see some serious increases in seizures. If this is the case we may have to continue the medicine and accept vision loss. I cannot tell you how hard it was to give her this medicine this morning, it was truly sickening. I am giving my child something that is causing irreversible damage and there is nothing I can do about it now.

We spoke with Piper's neurologist today and he agreed with us that it is time to try a wean to see if it is really even helping her anymore. It will be a month long process and we will start today. PLEASE PRAY seizures don't get worse. This is the best control we have ever had so we are very worried and nervous to make any changes. It will be difficult to transition since I just started school and Justin has been traveling so much. Hopefully she will tolerate the wean and things will be fine.

Earlier in the summer we suspected Piper was developing scoliosis which is typical with children who have low muscle tone. We took her to an Orthopedic doctor who confirmed our suspicions. He took xrays of her spine and hips. She has a slight curve (15 degrees) and her hips have not formed correctly. He did not act very concerned and told us to come back in 6 months. He also refferred us to a rehab therapist to help follow these issues and make sure we are connected. We met with her on Monday and she blindsided me by telling me Piper will need spinal and hip surgery in the next few years. The doctor had mentioned none of this so I was really suprised. I am very aware of the spinal issues as most of our Aicardi friends have gone through this or are currently going through this situation. I expected that it would be a lot later in her life before we talked about surgery. They mentioned that it will probably be need in two years and to go ahead and start meeting with the surgeon. They said bracing only prolongs the surgery and once she as scoliosis she will defientley need surgery.

She also told me Piper will most likely need hip surgery in a year to correct the ball and socket issues so she will not be in unbearable pain. I asked if she needed this since she does not walk and shows no signs of being able to in the future. The doctor said she will most likely just be in tons of pain if we don't. I have already talked to the other Aicardi parents and the ones who opted for surgery said they regret it because the pain from the surgery and recovery was worse than the pain from the issue. So it looks like we have a lot to think about.


On top all of this crazy news, Piper has just not been herself. For the past 2 months she has screaming spells that can last all day. There are many days where she will just scream or cry for hours and there is nothing we can do to console her. We have tried everything. We have done tests, taken her to every doctor to make sure she is not in pain but we just cannot figure out the reason why she has these outbursts. A friend of ours who has a daughter with Aicardi has been going through the exact same situation so we brainstorm what could be causing this behavior. We don't know if it is pain, boredom, behavioral issues or just frustration with not being able to communicate. It is exhausting for all of us. Evan has started mimicking her behavior so when she screams he does too. He sees how much attention she gets when she screams and wants that attention too. He is a very smart kid but we don't want him to be unhappy just to get our attention. 


We have some tough decisons to make but just like everything else we will figure it out with a lot of hard work and problem solving. I am going to end this post with  things I am thankful for even though some days they are over shadowed by the negative.

-We have a beautiful, smart, HEALTHY little boy who is an amazing blessing. He is almost standing on his own and will be walking before we know it.

-We raised enough money (thanks to many of you) to have a service dog trained for Piper. Toby couldn't be cuter!

-I just started school on the weekends to get my CNA certification. In Colorado, family members with CNA (nursing assistant) training can provide care for the affected person and get paid to do so. I will be able to earn some money and help with our financial responsibilities and that not only will help with bills but allows me to feel like I am carrying some of the financial weight.

-My part time business with Rodan and Fields is doing really well and I have finally been able to provide some income and help with expenses. I haven't gotten a pay check since I was teaching in 2010 and it feels really great to be able to help out with bills. It's so much fun too and allows me to connect with people and help them love their skin.

Thanks for the support, love and prayers.

Saturday, August 30, 2014

Seizure Response Dog

We have just recently started the process in getting a seizure response dog for Piper! As most of you know we had to leave our sweet pups back in TN with our best friends. It was one of the hardest things we had to do, they are our first babies! They are in a home where they get constant attention and are probably better off there. It's been hard not having them so a few months ago we started talking about a service dog for Piper. We came across a few companies that will train dogs specifically for people with eplilepsy. We had a hard time finding a company that would work with us since most patients have to be able to say commands to the dog, which Piper is unable to. Some of these companies charge up to $20,000 to train the dog so we thought it would be many years before this could be a possibility for us.

I was on facebook and came across a friend's post about their seizure response dog and asked for more information. Surprisingly she told me the company is in Monument, Colorado which is 20 minutes away from our house! We quickly got a hold of the company to find out more information. They told us they can train a dog to see me as the master but what makes Piper happy pleases me. It will take more training but it can be done. We learned that these dogs can really do amazing things, like respond to seizures by alerting someone, getting a phone, getting rescue medicine, and comforting the patient after the seizure is over.
We don't expect the dog to be able to sense seizures before they occur. What we do hope for is a companion for Piper. Our biggest fear with Piper is Sudden Death from Epileopsy (SUDEP). Piper often has seizures in the middle of the night, and while we have a monitor, they are often missed. With a seizure response dog, the dog would be able to alert us when these times occur. We also hope that he would be there to comfort Piper after the seizure is over.
- See more at: http://www.youcaring.com/pet-expenses/seizure-response-dog-for-piper/220501#sthash.blHRimsx.dpuf

We don't expect the dog to be able to sense seizures before they occur.  What we do hope for is a companion for Piper. Our biggest fear with Piper is Sudden Death from Epilepsy (SUDEP). Piper often has seizures at night, and while we have a monitor, they can be missed. We hardly get a good nights sleep because one of us is "in charge" of watching for seizures. With the dog we will finally have help at night and hopefully get some more sleep!

The cost of training the dog will be almost $9,000. It would take us a very long time to save this money so we decided to do a fundraiser. We are overwhelmed with how many people have donated and are so excited because we are now on the wait list for the next available puppy! We will be getting a golden doodle and we have been told by many people this is an excellent choice for a service dog. Once they find a puppy we will begin training in our home. They suggest starting training when the dog is very small so he can be around Piper and possibly learn to sense her seizures.
here is a picture of a golden doodle, this is not our dog  but an example of what they look like


If you want to learn more about the company, the fundraiser or donations go to this link

http://www.youcaring.com/pet-expenses/seizure-response-dog-for-piper/220501

We just want to thank everyone for donations, spreading the word and continuing to support our family. We love you all!
These dogs are trained to respond to seizures by alerting someone that a seizure is occurring, getting rescue medicine, getting a phone, and comforting the patient after the seizure is over. In many instances, these dogs are able to sense and alert the patient before the seizure even begins - See more at: http://www.youcaring.com/pet-expenses/seizure-response-dog-for-piper/220501#sthash.blHRimsx.dpuf
These dogs are trained to respond to seizures by alerting someone that a seizure is occurring, getting rescue medicine, getting a phone, and comforting the patient after the seizure is over. In many instances, these dogs are able to sense and alert the patient before the seizure even begins - See more at: http://www.youcaring.com/pet-expenses/seizure-response-dog-for-piper/220501#sthash.blHRimsx.dpuf
These dogs are trained to respond to seizures by alerting someone that a seizure is occurring, getting rescue medicine, getting a phone, and comforting the patient after the seizure is over. In many instances, these dogs are able to sense and alert the patient before the seizure even begins - See more at: http://www.youcaring.com/pet-expenses/seizure-response-dog-for-piper/220501#sthash.blHRimsx.dpuf

Friday, July 4, 2014

How to invest in your skin

Beauty products are expensive. Finding ones that work usually means a lot of trial and error, which means more money lost. It took me many years to understand that investing money in products that truly work will actually save me money in the long run. If I had started doing this 10 years ago my skin would not need as much work and my money would have been well spent. Now i know!

It was about 6 years ago when I was 27 that I started noticing a lot of changes in my skin. I saw deeper lines on my forehead, crow's feet and frown lines in between my eyes. I had never taken care of my skin, been sun burnt  too many times and it was starting to show. I starting worrying that it would get worse and finally started looking for products to help. I was in grad school at the time and very frugal so spending money on expensive products was something I just didn't want to do. I remember buying Oil of Olay products which were anywhere from $12-20 a bottle. I tried these products for at least a year and didn't see any changes in my wrinkles, they actually were getting worse. I also did not use facial sunscreen so that just added to the damage. I came across the meaningful beauty commercial and was intrigued by the "amazing results" before and after pictures  and desperately wanted to try the regimen. I finally signed up for their program and was thrilled to receive the products. The first time I washed my face the toner burned so bad I had to put an ice cold washcloth on my face to stop the burning. I stopped using the toner and continued with the rest of the regimen. I was highly disappointed at the end of my trial of the products and decided to refund the products since I saw no results again. Long story short, it was nearly impossible to return my items so I ended up throwing money away again. In my late 20's I started having horrible acne outbreaks that would leave me embarrassed to even leave the house. I once again spent tons of money on inexpensive products that didn't help or were too harsh. I finally found the Proactiv line and used it for a year and my acne was gone...for good. So what is the point? I spent hundreds of dollars on products spread over a long time so it seemed like I wasn't spending too much money. Little did I know I was spending tons of money with no results and when I did invest on a better product I finally saw results.

Why do I care about investing money in my skin? It's your skin!! You can spend tons of money on clothes, jewelry, accessories and shoes but  you only have one chance at your skin. I am 33 and seeing changes in my skin I didn't think I would see until my 40's. If I don't do anything now what will my skin look like in 10, 20 or 30 years? I don't want to wake up 20 years from now and wish I had done more. I have friends my age who are already doing botox and considering plastic surgery. I can't imagine how expensive those procedures are and you still have to spend money on products to keep your skin looking good after surgery. With Rodan and Fields you get products that really work without having to go to the dermatologist, another added expense that many insurance companies don't cover. When I first became interested in using the products I sat down and calculated how much I am already spending on myself. What expenses could be cut? Do I really need all those shoes? I was really surprised how easily I could budget for these products simply buy cutting some costs in other areas. I challenge you to sit down and do the same, it was pretty shocking what I was already spending.

Why did I chose Rodan and Fields? As I mentioned before, I loved the Proactiv line and it healed my skin and didn't just temporarily fix the problem. Rodan and Fields are the dermatologists that developed Proactiv so when I heard they expanded their line to fight anti-aging, sun damage and sensitive skin I knew their products were reliable.


I look at investing in Rodan and Fields products like I do when purchasing a house or car. You can buy something cheaper and less reliable and end up spending money just as much money on repairs. In my opinion,  spending more money initially on a reliable product is a better investment with less stress. So what if you don't have the money to invest?

This is what I love about this company, you can invest in the company and pay for your products with little risk. As a consultant, you can buy your own products at cost and with just a few orders a month cover your costs. You don't have to have a big business and spend hours of time you don't have. You can basically just be a consultant to get your products at cost. It's so much easier than most people imagine. You can do all of your work through facebook and emails if that is easier for you. This is one reason why I started this business. I just wanted to feel like the risk of spending money on products wasn't there. Little did I know it would be much bigger! For me, getting a paycheck again has been one of the most empowering feelings. It just makes me feel like I can help provide for my family and have fun while doing it. Most of you know my personality, I am not a sales person! That was my initial fear but once realized it not that kind of company I really felt at home. I love just connecting with old friends and being able to talk to people and make new friends. It's a lot more fun to talk about pampering yourself with a stranger than Aicardi syndrome, seizures and therapy. It truly has been a game changer. The reason why I am sharing this with you is because I have so many friends who may be in the same situation. Money is tight and it's scary to make investments. Just letting you know that this company can take the risk out of spending your money by allowing you to invest in them. I would love to help you do the same!



Wednesday, June 11, 2014

Keeping busy!


I want to give everyone a little update but we have done so much in the past few months that it will be hard to fit it all in. I will just give a little summary for each one of us. 

Evan: He is doing great! He is a very happy baby who loves people and smiles at everyone he meets. He is growing fast and just like Piper is a big kid. He is already out growing 6m clothes! He loves playing with toys and is picking up everything he can get his hands on. His favorite thing to do is stand and he can hold himself up against the couch or activity table without our help. It looks like he may be a picky eater, we have tried a few foods with him but so far nothing he likes. He has figured out how to roll and has started scooting his face across the floor in attempts to crawl. He is very picky about who he wants to hold him and gets scared if it isn't someone he is used to. He is growing up so fast!



Piper: Piper is doing great too! Her seizures are finally at a very manageable amount. She had her first seizure free day this month! She went 36 hrs without a seizure which is unheard of. We have definite proof that cannabis is working and has changed her life. She is happy and playful and her true personality is finally started to emerge. We learned that she is absolutely a daddy's girl. She will cry and whine until she sees him. When she is upset at night he is the only thing that calms her down. It's so amazing to finally see this!! We just enrolled her for preschool and she will start in August. We hope this can be a great experience for her and that she doesn't get sick. We are going to try it out and see how she does. She thrives when she is around other people and new environments so we are praying this will work for her. 


Justin: He is busy like always with work but finds plenty of time for house projects. We are so happy to have a home that we love and feel comfortable in. It turns out he is more creative than me and better at home projects. He has done so much to personalize our home and it looks great. He is also training for another half marathon coming up soon! 


Annie: I have started my own business!! After months of considering all my options I decided to sign on as an independent consultant with Rodan and Fields. I love their skin care products and their business opportunities. I am able to spend a few hours a day working and make some extra money for the family. The best part is it's fun!! I wish I had started sooner! I have seen amazing results already 






I will also start school in the fall to get my CNA certification. Colorado allows parents with sick children to get paid for caring for their child if they have a CNA. This is so amazing and I can't wait to get started. We found a program that last 8 weeks and I will go all day Saturdays and Sundays. 

We are having a great summer and feel like a normal family. With Piper doing so much better we can get out, go to church again (finally!) and meet people. Things are great in Colorado :)

Tuesday, April 8, 2014

A day in the life of a special needs parent

I am writing this post mostly to vent but also to give you a glimpse into our visit at the hospital. 

We recently did a routine EEG at Denver Children's hospital. This was something we requested to look for changes in seizure activity and to have new baseline data. We have done this at least 10 times now and I can honestly say this overnight visit in the hospital was the worst. I pray Piper never gets sick because I never want to be admitted here again. 

Just a few of the conversations I had during our stay....

Me (7:30am at the hospital registration): Good morning, we are here to check in for our EEG. 
Receptionist: Great! Thanks for getting here on time. 
(5 min check in)
Receptionist: If you will just have a seat over there it should be about an hour before we will have a room ready. 
Me: So, why did we get here this early? We could have been 45 min late and still had plenty of time?
Receptionist: Yes


Physicians assistant (in the middle of Piper getting leads put on her head and screaming at the top of her lungs) : I would like to review Piper's medical history with you. 
Me: Do you have her medical records from TN that contain her entire history? 
P.A.: Yes, I do, but I would like to hear them from your mouth.
Me: Alright then, but you are going to have to speak a little louder. 

Me: I would like to order lunch for my daughter. She is on a gluten free low sugar diet, so I need green beans, pears and a sweet potato. 
Lunch lady: Oh,I'm sorry those items are too dangerous for her to eat, they aren't classified as soft. The skin on the sweet potato could be a choking hazard. 
Me: I think you can remove the skin. I've actually done it before. 
Lunch lady: Ok, we can TRY. I will have to send other items in place of the two other choices that Piper can handle. 

Here is what she sent 


Me to our night RN: Piper has startle seizures so if we could avoid any interruptions during the time she is sleeping that would be great. She is not sick so there is no need to weigh diapers, check vitals as often etc. How about I buzz you if she has a seizure and otherwise don't interrupt her sleeping. 
RN: ok, sounds good. 
(20 min later after Piper has fallen asleep)
RN: Just checking in on you, I need to know what Piper has eaten today. (Wakes Piper up, triggers seizure)
Me: speechless 

Night RN: If Piper has a seizure lasting over 5 minutes it's our protocol to give rescue medicine. 
me: We don't use that protocol at home and do not feel comfortable giving her rescue meds. Every cluster she has lasts over 5 minutes. According to your protocol she would have been given rescue meds 4 times since we have been here. Did you speak with the day nurse before she left?
RN: Yes, I did and she told me the exact same thing you did. 
Me: So what's the problem?
RN: It's our protocol to administer rescue meds after 5 min. 
me: Looks Like the day nurse and Neurologist didn't follow protocol. 
RN: Oh, I guess you are right. 

Night RN: Piper gets her medicine at 9pm. You are welcome to give her CBD oil because we do not supply that but we can't let you give her fish oil or melatonin supplements. 
me: What? Why?
RN: We have to use our own meds but do not have liquid fish oil.
Me: You just said I can give CBD oil since you don't have it on hand. It's the same situation. Why can't I give her melatonin?
RN: She has to take the pill provided by the hospital. 
Me: She can't swallow a pill. We have to use our powder. Please send your supervisor in so I can talk to them about this situation. 
(30 min later)
RN: You are welcome to give her anything you want. 

Let me add that after all of this she still brought one of Piper's meds in at 9pm. Piper gets 2ml of this med. I threw it in trash and made my own. The wrong dose, seriously??!

Night Nurse: If Piper has a seizure tonight please push the red marker button. 
Me: We have been here for 12 hours and I have already pushed this button many times. She may have seizures I don't hear if I'm sleeping so will the people monitoring the video catch them?
Nurse: You are planning on sleeping?

Day nurse: You have to be in the room with Piper at all times.
Me: No problem
Nurse: That means all day and night, you can't go home to sleep. 
Me: What?? This isn't where I drop my child off for overnight day care??!! Crap, I was looking forward to a relaxing night with my husband. (Ok, I only thought this one but sure did want to say it) 


(After all my attempts to prevent interruptions and startle seizures during the night, the nurse came in at 4am to take her temperature. She was startled, woke up and had a cluster. She was unable to go back to sleep and screamed for two hours. The only thing that calmed her down was getting in the bed with her. Nurse comes in at 6am while I am snuggled up with her in the bed) 

Nurse: What's wrong with Piper?
Me: You woke her up at 4, triggered a seizure and she couldn't get back to sleep.
Nurse: Oh, poor thing! 
Me:You couldn't hear the screaming?
Nurse: I sure did, poor baby! By the way, you can't get in he bed with her, it's protocol. 
Me: I thought we agreed our protocol was no interruptions. Looks like we both are in trouble. 


Me to nurse: Two of Piper's leads have fallen off and I am afraid it will affect the results of the study. 
Nurse: I don't think they are that important. 
Me: You don't think the things that are measuring seizure activity are important to the seizure study we are doing??
Nurse: I'll try to find someone to fix it but no promises. 
Me: I think it's time for use to go home. 

 

Saturday, April 5, 2014

Where does the time go?

Like we always say, time is flying and we wish we could slow things down! Evan will be three months old soon and is learning and changing every day.  We feel like we are new parents for the first time because our experience so far is so much different than with Piper. He is smiling, laughing, cooing, babbling, rolling and loves to stand! He may very well be the happiest baby I have ever been around. We feel so blessed that he is so mild mannered and such a joy to be around. Like I have mentioned before it is a little bittersweet to see him progress so quickly and he has already mastered things we have been working on with Piper for 2 years. We always try to avoid comparing Piper to other children and was easy to do when it was just her.  Watching how he learns does help me think of new ways to work with Piper so I take it as a great learning experience!
 


Many people have asked how we are holding up with two young children. Honestly, (knock on wood) it hasn't been that much harder. I know things will get a little harder when he is mobile but for now things are really good. Once I was fully recovered and back to my busy self it only took a few days to get used to taking care of both of them. Piper is still very high maintenance but Evan is such a good baby so it's not as hard as I expected. Piper hasn't paid much attention to her brother but we noticed yesterday that she becomes more whiny and needy when she hears him or knows he is in the room. Although we don't want her to be upset we are proud of her for knowing something is different! She understands more than we give her credit for.

Piper has experienced ups and downs in the past few months. She was doing really well on CBD oil until our last batch. We changed her dose and saw some bad seizures return. Since her medicine is plant based, every batch is a little different. The ratio for the last batch was different and we think that may be the cause of the changes in seizure activity. We are making changes and already seeing better control. We will be doing an overnight EEG on Monday to see if she has anything new going on.

The past few months have taught us more that we expected. Since Piper's diagnosis we have learned to handle stress, disappointment and heartache the best way we can. It seems like her condition has affected everyone around us and most people just are not able to handle the stress the way we do. It has taught Justin and I to continue to be positive and love each other even more. We do not let negativity weigh us down and chose to surround ourselves with positive situations. We thank the people who can provide that for us and our children. Even with the struggles we are so blessed and extremely happy. We are not saying it's easy but we have an amazing marriage and two beautiful children, how could we not be happy!

Moving to Colorado did something I expected, brought Justin and I even closer in our relationship. We really just rely on each other and trust each other so much. It was scary and a huge leap of faith but we are here and I know that is for a reason. We have found a church we really like and are hoping to get more involved soon. Its nice to get back to a normal routine and to start meeting people again. We are also very excited because we found a house we love and will be closing on it May 1! Living in an two bedroom apartment with two small children has been more than a challenge, especially when Justin works from home. I have been very creative finding places for the kids to nap (hallway, bathroom, closet!) I am lucky Evan is a "go with the flow" type personality because he really doesn't have a choice. I guess being born in Colorado has helped with his laid back personality.  

We have been looking for months for a house that is conducive to Piper's needs. It was hard to find a ranch style house but we finally did. We will have to make modifications like ramps and other things as she gets bigger but we are so happy we won't have to worry about carrying her up stairs. We are so excited to have more space and finally have seperate rooms for the kids! Right now Justin sleeps in the master bedroom with Piper and I sleep in the nursery/office with Evan. It's going to be amazing to sleep in the same room with my husband again!!! It's funny how kids change everything...


We thank you all for the continued support and love!