Baby Steps

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!



Tuesday, February 25, 2014

Sick and tired of being sick!

Well the past 6 weeks have been a little different than we expected. Evan was born via Csection and they found a lot of scar tissue and a few other issues. The doctor was able to get rid of the tissue and did a great job. He is perfectionist so it was a longer surgery but we are thankful he took the time to fix everything. Evan had no issues and has been healthy and growing. 

The first three weeks of recovery were going really well and I was recovering much faster this time. The hardest part of the recovery is not being able to lift Piper and exercise for 6 weeks. It's very hard not to go back to a normal routine of taking care of my children. I worked out the whole pregnancy and felt great so not being able to has been a challenge. I go back to the doctor on Friday for my 6wk checkup so hopefully I can get back to normal soon. 

 Everything was going great until last Saturday. I spiked a fever, had chills and other flu like symptoms. Justin took me to the ER (instead of on our valentine's date ) to make sure I didn't have complications from surgery. They did blood and urine tests and really couldn't figure out what the problem was. I had an elevated white blood count in my urine and was treated for a UTI. After 5 days on antibiotics with no relief I went to a doctor to get more answers. He suspected it was a kidney infection and would take longer to recover. He also noticed my liver is swollen and was worried about me having mono. He took blood and I won't know the results until Thursday. 

Piper has also not been feeling well and has spent the past few weeks sleeping the days away. After the doctor mentioned mono it made me think she may have it too. Fortunately, since she has been taking cannabis oil her immune system is stronger and seizures don't get too out of control when she is sick. Hopefully, the test will be negative and she will get back to herself soon. We hate seeing her sick. 

With all the sickness we have worried about Evan getting sick and he has been fine until last night. He was up all night with diarrhea and not eating like normal. I took him to the pediatrician and he has a stomach virus. He is so mild mannered that I knew something was not right. There is nothing much we can do but wait it out and monitor him closely. The doctor advised me to clean and Lysol the apartment from head to toe. 

Justin is the only healthy one around here so we are praying he doesn't get any of the germs going around our house. This is the first time in years I have been sick this long and would really like to get back to normal! We can't complain too much because we have had plenty of help from family who have been taking turns staying with us.  I have also lost 30 of my 42 pregnancy pounds which makes me happy even though it hasn't been the healthiest way :) adios maternity clothes! 

Overall, it has been great having Evan here. He is such a sweetheart and we love him so much. He is the most expressive baby I have ever seen and is very curious. He was lifting his head up looking around an hour after he was born. It's amazing how fast he learns but is a little bittersweet when we have been trying to teach Piper the same skills for over two years. We will have to learn to not let that get to us and be excited for both of our children. Piper is adjusting well and is still trying to figure out who is making all that noise. We are very happy and hopefully will be healthy soon. 



Thursday, January 9, 2014

Evan and Piper updates

Well I am officially sick of being pregnant! I am 39wks and 1 day and carrying a very big baby boy. He is measuring at 8lbs 8oz and could possibly go two more weeks. His due date is Jan 15th and we have a Csection scheduled for the 22nd. I am going to attempt a VBAC but if he is not here by next week we will consider moving the surgery because I am not sure I will able to make it two more weeks. I have been in a lot of pain the past couple weeks so the sooner the better. Overall, this pregnancy has been very easy up until recently so I can't complain much. We were able to see his little face yesterday and I think we are going to have another Justin look alike. We are so excited to meet him and hopefully something will happen soon.



Piper is doing well too. She has been on Charlotte's web since October 24 and we have seen positive results. She is still having seizures but they have reduced in frequency and severity. In July, before we moved here she was having 2-6 clusters of spasms that would last up to 15min each. In the past month she has consistently had 1-2 spasms a day and some days she hasn't had any at all . She has single spasms that last about 3-5 seconds and do not really bother her at all. She has had many days with 3-5 single spasms only. On these days when she only has a few single events she is only seizing for up to 25 sec! She has very good days and only a few "bad days". Her bad days do not even come close to comparing to what we used to see. She recovers so much faster and a strong cluster will not wipe her out for the day.


The most interesting and surprising thing we have seen since we started treatment is her overall health and well being have improved drastically. Before we moved she averaged 4-5 hours a sleep at night, not consecutively. She would sleep a couple hours, wake and have seizures, sleep a couple more and seize again. She never got a good nights sleep and was tired all the time. Now, she is consistently sleeping through the night and if she wakes she is able to get herself back to sleep! She is sleeping up to 11 hours a night without seizing!! I can't explain what a huge deal this is for her. In my opinion sleep issues have always been second to seizure control and this change is unbelievable. She is cutting three teeth right now and is still able to sleep all night. When we moved here we said even if this medicine helps her sleep better it will be worth it.

Her cognitive, physical and visual functioning have also improved in a short time. She is moving her body more and using her arms and hands. She has always had issues with using her arms and hands and has never really used them. In the past two weeks she has used her hands more than ever and has started reaching out for toys etc. She has learned things that we have been working on for years in just a few weeks. Her brain seems to be making better connections and she is able to learn new things. Her muscle tone has also improved. She is almost sitting independently which she was not doing before the move. Her whole body has gotten stronger and continues to do so. Her vision has improved and she is attentive and alert. She can focus on toys and interacts like she never has before. She is vocalizing more and has started making the "ma" sound. She has actually said "ma ma" but doesn't do it purposefully. It is still exciting to hear her making new sounds. All of the changes in such a short time are proof to us that this treatment is helping. We have worked on many of these challenges since she was 6months old with no progress and suddenly in 2 months she is able to do them all. It is truly amazing!





So with the evidence of how this treatment is changing her life we have decided that we will be staying in Denver for as long as it works. We have started looking at neighborhoods and houses in the area because we are quickly running out of space in our apartment. We really love it here and it feels like home. We miss everyone very much but are very fortunate to have family and friends that can visit.