tag:blogger.com,1999:blog-72133943066203383432024-03-12T15:04:06.006-07:00Baby StepsLearning to live life one day at a time.The Koozershttp://www.blogger.com/profile/04256209375225522353noreply@blogger.comBlogger69125tag:blogger.com,1999:blog-7213394306620338343.post-18356023340021041722015-08-18T14:26:00.001-07:002015-08-18T14:49:52.918-07:00Back to schoolIt's that time of year again. The season I used to love best. The air is cooler and crisp in the mornings. The smell of the air will always remind me of so many things I've tried to forget. First seizures, first thanksgiving spent in the hospital and months of stress, sorrow and sadness. We do everything we can to make new memories around this time of year but the bad ones never fail to creep back in. Tomorrow, Piper will be four and I don't think I'm ready. Every year is more challenging even with all the blessings we have. Someone told me the first year was the hardest, I think it gets harder every year.<br />
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Preschool starts tomorrow on her birthday. As I plan her party and get her stuff ready for school it hits me that I have been doing the same thing for years. Back to school preparing consisting of me adjusting her wheelchair, stocking up on diapers and pacifiers. Sadly walking through the school supply section of Target wishing I could buy her new markers and crayons and we could color together and talk about school starting. I try not to let it get me upset but it's so bittersweet.<br />
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Once again I buy birthday clothes instead of toys because buying infant toys is just too much anymore. I plan her party and pray I don't cry when I see other kids running around playing and enjoying life like she can't. I pray that she doesn't have a seizure while we sing happy birthday and that maybe she will smile a couple times. I pray that she knows how much we love her. It will be even harder this year because it's the first year we won't have family here to celebrate. Something about having family here makes me think for a moment things are normal, things are happy. We are so thankful to have another year with her and try to think of the happy moments not the months she has struggled.<br />
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Since her surgery in March things have been incredibly hard. Seizures were worse than ever and we spent every waking hour praying, begging, and pleading for some relief. We have cried more and been stressed out more than we have in years. We finally decided to add a new seizure medication in hopes that it would get her back to baseline. We also decreased the VNS and think it was the reason for all the gut wrenching screaming seizures. After three weeks, things are finally under control again. PRAISE GOD!!! We can leave the house again!!! We are so thankful but of course it comes with other challenges.</div>
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With the months of horrible seizures she spent most of her days seizing and sleeping. Her appetite decreased and most of the seizures were so strong she would throw up during. We knew last week when we took her to the GI doctor the dreaded conversation would occur..gtube (feeding tube). I prepared myself and hoped by some miracle she had gained some weight over night but knew it would most likely be the main topic of discussion, and it was. Piper is so underweight that she is no longer on the growth chart. Our doctor is very concerned that without proper calories her bones and body will not develop as they should. The doctor knows we don't think she is ready for a gtube and suggested doing a high calorie diet for 2 months and if she gains 6lbs we will continue to feed her by mouth. If not we will need to get a feeding tube placed in her stomach provide her with nutrition.<br />
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When you only weigh 28 lbs, adding another 6 is a lot. My first thought was I am already having trouble lifting her, what will I do if she gains 6 lbs?! I will be working so hard to fatten her up just to work even harder to lift her. When she was little I remember thinking I won't have to worry about her being too big to lift for a long time, but it's here already. Even with working out and lifting weights it has become a big challenge for me.<br />
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There are a few good things that we learned, a typical 4 year old is supposed to get 1200-1500 calories a day and she is nowhere close to getting that. We just didn't know and now we do so there is plenty of room for adding calories. We met with the dietician and she gave ideas on how to increase calories without increasing volume.We think she can do it as long as we stay on top of calorie counting and finding recipes. This also means all of her food needs to be cooked by us to avoid added sugar and processed food which can increase seizures. It's another thing added to our already rigorous schedule and it means we can't be lazy. We pray she can gain this weight and that we don't go crazy trying to keep up with it all!<br />
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The next few months will be emotionally hard for us but we have great things to look forward to. Seizure control will allow her to go back to school and it is great for all of us. I have been able to start serving at church in the elementary program and it's great to be able to do that again. Justin is serving with the middle/high school students which he hasn't been able to do in 4 years. We are training for a marathon/half marathon in October and are so excited. We are in the process of buying a wheelchair van and should have it in a couple months. We have made it our own family tradition to go to the mountains every year for Thanksgiving and are looking forward to doing that in a few months. We have new friendships that are growing and it's something we have needed so much since we moved.<br />
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Thank you all for the messages and words of encouragement during the past few months!<br />
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The Koozershttp://www.blogger.com/profile/04256209375225522353noreply@blogger.com42tag:blogger.com,1999:blog-7213394306620338343.post-45597524401232672482015-07-03T08:24:00.000-07:002015-07-03T08:50:06.420-07:00A long, overdue updateImagine the most difficult choice or trial in your life. Imagine a serious threat to you or a loved one. Now imagine living that moment every minute of every day for 1,326 days. When forced with a serious threat your body goes into fight or flight response mode. We all know how it feels. If you choose to fight your brain and body go into survival mode. Your hypothalamus tells your sympathetic nervous system to kick into gear to help you survive your present danger. Your adrenaline pumps, your blood pressure rises and all that matters is getting through the situation and returning to safety. Your brain doesn't rest, it is difficult to sleep, eat, focus and think of anything else. On a smaller scale, we have been in fight response mode since Piper's first seizure. It is relentless, exhausting and wearing on our souls.<br>
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Epilepsy is an emotional roller coaster of inconsistency, sadness, fear and anger. We just want to take the pain away and help her be happy. Lately, it has become very hard to do either. Seizures are not consistent and with the recent VNS implant it has been another huge challenge with no end in sight. What we currently know is cannabis oil has been the best line of treatment, hands down. It worked best in conjunction with a seizure medication specifically for infantile spasms, Sabril. Unfortunately, the "rare" side effects of this medication were a reality for her as she began to have vision loss from the drug. It wasn't worth it to us to take away any vision she may have so we took her off of it. We prayed the VNS would take the place of Sabril without the harsh side effects. Not only has it not taken the place of Sabril but has made seizures worse. For the time being, the VNS is not working and we can only pray that over time it will. She never seems content or happy like she used to be and it may be from the VNS or the fact that she is no longer on sedating medication. She whines, cries and just seems uncomfortable all day. We hates seeing her like this and we are at another crossroad, another decision that keeps us up at night...what do we do next? We have done everything we can with adjusting cannabis oil and honestly it has helped us through the really rough times. We feel her current doses are working the best for her and we will continue to keep things were there are since we have exhausted our options. We still feel like it's just not good enough. We have seen better times and are striving to get there again. We hate the idea of starting another seizure medication but we also have to think about the quality of life for our family. We spend every waking hour discussing the next steps and we are honestly sick of talking about it.<br>
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In the past month, seizures have morphed into something out of a horror movie. If you haven't seen a bad one, I hope you don't. They are violent, with ear piercing screaming that will stop anyone in their tracks. They last up to thirty minutes and she is completely exhausted for hours after. We have also hoped she didn't feel pain when she seizes, and now it's pretty clear she does. They are often startle seizures causes by everyday noises that cannot be prevented. I cannot tell you how it feels to sneeze and cause a thirty minute screaming, drooling, violent convulsion. It's an emotion no one should feel and it happens many times a day. It is something Evan is starting to understand and it breaks our hearts. We walk around on egg shells praying we don't cause the next episode and you can cut the tension with a knife.<br>
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With all of the changes in seizures, the past few months have been very hard for Justin and I. We have so much going on and hardly any time or energy to deal with it all. We have become masters of distraction, masking, and any other defense mechanism that just gets us through the day. We push the limits in all areas of our lives because our limits are always being pushed. (have I mentioned we are training for a half marathon/marathon?)We have been conditioned to thrive on stress and problem solving seems to be our on mode of conversation on most days. Not all of these things are bad, just makes it almost impossible for us to relax and shut our brains down in order to rejuvenate for the next day.<br>
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Last month,we had a very rough week and I began to pray for help, not for seizure control like I always do but for help in any form. Within the next week, God gave us sign after sign, people were there almost immediately wanted to help us in so many different ways. I have spent many moments in my life questioning my faith, wondering why things are the way there are. Every time I feel like giving up, something amazing happens and my faith is restored. People I barely know have contacted us asking how they can help. People in our church and community have reached out to us and we have breathed a sigh of relief for the first time in a very long time. We are not people who ask for help, especially me. I have always just done things on my own, only because I don't want to bother other people with my problems. For the first time I am welcoming help from others, and I should have done so a long time ago.<br>
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Some of the amazing things that are happening in the midst of these trials have helped us focus our energy on the positive. Our amazing church now has a special needs ministry and we are able to attend service just the two of us. We know Piper is in good hands and they are loving on her which we know makes her happy. We are able to finally start connecting with people and making new friends. We also have some amazing people who have offered to watch Piper so we can spend time with Evan, have a date night or hang out with friends. We were blessed to have Justin's mom come out for a week and watch Piper so we could take Evan to the beach. Since Piper can't leave the state with her medicine, going to the beach has never been an option so this trip was very special. Although it makes us sad she couldn't go it was refreshing to spend five days without seeing, hearing or thinking about seizures. The memories we made will last a life time. It's amazing how you cherish things so much more when your life is full of so many challenges.<br>
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We also had a friend of mine from high school who contacted me and started a huge fundraiser for our next big purchase, a wheelchair van. Piper is a very tall girl, she is at the point where I have a lot of trouble lifting and transferring her to the car. It makes me question if the trip out of the house is worth the work. I don't want to get to the point where I stay at home all the time because it's too hard or dangerous for me to get her in the car. She cries when we transfer her so if we can limit the times we do so it will make her happy too. It's bittersweet, but we have started the process of getting a wheelchair van. It will help so much with her quality of life and ours too. We have been adamant about giving her typical experiences and this will only help us to be able to do so. This will be a huge purchase and we are trying to get a newer converted van so it will last a long time. The used vans we are looking at are around $50,00-60,000 before taxes! Thanks to so many of you we have already raised money to put towards this purchase and we are so thankful. I cannot tell you how much it means to us to have continued support from our family, friends and even people we don't know!! It is a constant reminder of the great things we have in our life and helps us focus on the good. We will continue to focus on the good, be thankful and give our kids the lives they deserve and thank you all for helping us to remember what is important!!<br>
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Here is the link to the fundraiser if you want to share it, don't feel obligated to donate, many of you have already helped us so much in the past 3.5 years!<br>
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<span style="background-color: white; color: #666666; font-family: helvetica, arial, sans-serif; font-size: 13px; white-space: nowrap;"><a href="http://www.youcaring.com/piper-koozer-361314">http://www.youcaring.com/piper-koozer-361314</a></span><br>
<br>The Koozershttp://www.blogger.com/profile/04256209375225522353noreply@blogger.com2tag:blogger.com,1999:blog-7213394306620338343.post-42968434904333234182015-04-29T05:06:00.001-07:002015-04-29T05:06:51.716-07:00Prayers for PiperIt's been another trying month. <div><br></div><div><br></div><div>Surgery went well and she recovered quickly without any problems. She hardly cried or complained at all which was a huge blessing but we are now facing some unexpected challenges. </div><div><br></div><div>Since the VNS implant we have seen an increase in seizure activity. We were told the first few weeks after recovery would most likely cause some increases due to pain. We waited it out and expected her to get back to "normal" after she fully recovered. The device is slowly ramped up every week until the desired settings are reached. She has only had 2 out of 6 adjustments and it has been rough. After every adjustment we have seen a huge increase in seizures, up to over 15 seizures a day. Some of these episodes can last up to an hour, so the majority of her day is spent seizing. </div><div><br></div><div> We think the VNS is actually causing seizures. We are frustrated and extremely disappointed. Our Neurologist said its unusual for this to happen but we have already talked to a few families who had these issues too and ended up turning off the device. All we can do now is push through the adjustments and pray things level out or turn the device off. We don't know what is best and have spent hours trying to decide what to do. </div><div><br></div><div>All we have ever wanted for Piper is for her to be happy and as healthy as possible. We have tried everything and sacrificed our happiness in the process. We have always been willing to do this for her and are at a point where we don't know what to do next. With so many seizures we can't get out much and when we try it's usually more stressful than fun. </div><div><br></div><div> We are praying for direction, patience and strength. Please pray for all of us. She deserves a break, please pray she gets one soon. </div>The Koozershttp://www.blogger.com/profile/04256209375225522353noreply@blogger.com4tag:blogger.com,1999:blog-7213394306620338343.post-31049865615295625402015-03-03T09:17:00.002-08:002015-03-03T09:22:57.853-08:00VNS surgery, MRI and Strabismus It has been quite a while since I have updated the blog. We have made some big decisions and have some new things going on with Piper.<br />
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Piper has been off seizure medications and is only using Cannabis oil for seizure control, it is pretty amazing! The last wean in October was pretty rough, but seizure patterns leveled out and we were able to establish a new baseline. She is currently having around the same or better control, without the horrible vision loss side effects. She actually has days where we see no activity at all!! The cannabis oil is really working! <br />
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So you would assume things are going well...<br />
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We are really surprised to see some new changes in mood, pain and irritability. Since her first seizure, Piper has been on pharmaceuticals, most with sedating side effects. We really have never seen her true personality or seen her communicate that she is in real pain. We have seen a new child, in good ways and in really bad ways. Since she has spent most of her life sedated, we can now see that many of her issues cause her a lot of pain and discomfort. She now has crying episodes that can last non stop for days at a time. These are full force painful screaming tantrum like episodes and there is absolutely nothing you can do but wait it out. The longest one lasted every waking hour for 5 days. There was absolutely nothing we could do to calm her down and trust me, we tried EVERYTHING. We have gone down the list of reasons for the screaming and after 4 months we think we have figured it out. We first suspected GI issues but during her last 72 hour stretch of screaming we took her to the ER and had a stomach X-ray and learned that was not the problem. We have methodically been keeping notes of when they occur and what variables are the same from the previous episode. We have consistently seen that crying episodes are caused by NOT having a seizure for an extended period of time. It seems that there is so much activity in her brain that is not able to be "released" via seizure that it builds up and causes extreme pain. Every crying episode is followed by a large seizure and then she is back to her happy self.<br />
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We are now at the point where there are many days where we pray for a seizure....just to make the crying go away. It has gotten to the point where our whole family's quality of life is being affected. We haven't been able to take her anywhere because the crying is so bad. We alternate taking Evan to do fun stuff and try to keep him away from the chaos. He learned very quickly that screaming gets Piper attention so he does it too. We have tried pretty much everything, the only thing that has helped at all, surprisingly is essential oils. They have helped with a lot of her ailments but we think that the pain may be a little more severe and we need to do something to help her get some relief. So with all of these new issues, we have been doing research and talking to our Neurologist about the best plan of action.<br />
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We have decided that a VNS implant is our best option for seizure and mood control. We don't want to put her on any medication for mood, especially since we saw how sedated she really was. The VNS is something we have always considered but she has never been big enough for the implant until now. The VNS is an implant on her Vagus nerve and is often called a "pacemaker" for the brain. It is designed to prevent seizures by sending mild impulses of electrical energy to the brain. With Piper's build up of extra energy in her brain, the VNS will most likely help clear some of the "noise" so she can rest. You can use a magnet and swipe the device when she is having a seizure and it will slow it down or stop it completely. We can also train Toby to swipe the magnet too! We have done months of research and talked to a lot of people who said it really helped with mood. We are praying it works for both seizures and mood. To learn more about the implant click here<br />
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<a href="http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/vagus-nerve-stimulation-vns">http://www.epilepsy.com/learn/treating-seizures-and-epilepsy/devices/vagus-nerve-stimulation-vns</a><br />
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The surgery will be on March 31 and she will also have a MRI and strabismus surgery. Since we are putting her under we wanted to get it all done at once. The strabismus surgery is a simple procedure that will help strengthened the muscles in her eyes and hopefully help with the crossing. It could possibly help with her gross motor skills and her vision.<br />
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We have a very busy, stressful month and could use prayers. We know this is a great option for her with no side effects and slight risk for infection. It is still not easy to know your child is going to have surgery and a device placed in their body. Please pray that the combination of Cannabis oil and the VNS will finally be the answer!<br />
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<br />The Koozershttp://www.blogger.com/profile/04256209375225522353noreply@blogger.com3tag:blogger.com,1999:blog-7213394306620338343.post-6284273277347022272014-10-30T19:29:00.000-07:002014-11-04T12:27:09.513-08:00November Epilepsy Fundraiser<div class="separator" style="clear: both; text-align: center;">
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<span style="font-family: Verdana,sans-serif;">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!</span><br />
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<span style="font-family: Verdana,sans-serif;">To read more about the project follow the link below</span><br />
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<span style="font-family: Verdana,sans-serif;"><a href="http://www.epilepsy.com/ren">Rare Epilepsy Network</a></span></div>
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<span style="font-family: Verdana,sans-serif;"> To learn more about Aicardi Syndrome and Piper follow the link below </span><br />
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<span style="font-family: Verdana,sans-serif;"><a href="http://thekoozers.blogspot.com/p/faqs.html">Piper Koozer</a></span></div>
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<span style="font-family: Verdana,sans-serif;"> How can you help?</span><br />
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<span style="font-family: Verdana,sans-serif;">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</span><br />
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<span style="font-family: Verdana,sans-serif;"><a href="https://akoozer.myrandf.com/">https://akoozer.myrandf.com/</a></span><br />
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<span style="font-family: Verdana,sans-serif;">To find out what regimen is best for you take a 30 second quiz to find out. Click this link</span><br />
<span style="font-family: Verdana,sans-serif;"><a href="https://akoozer.myrandf.biz/Pages/OurProducts/GetAdvice/SolutionsTool">Solution Tool</a> </span></div>
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<span style="font-family: Verdana, sans-serif;">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 </span><br />
<span style="font-family: Verdana, sans-serif;">YourRodanFields@gmail.com. </span>The Koozershttp://www.blogger.com/profile/04256209375225522353noreply@blogger.com265tag:blogger.com,1999:blog-7213394306620338343.post-84369687873394855962014-10-03T07:43:00.000-07:002014-10-03T14:26:42.436-07:00More tough decisionsFall 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.<br>
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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.<br>
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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.<br>
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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. <br>
<br>
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.<br>
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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.<br>
<br>
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. <br>
<br>
<br>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. <br>
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<br>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.<br>
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-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.<br>
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-We raised enough money (thanks to many of you) to have a service dog trained for Piper. Toby couldn't be cuter!<br>
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-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. <br>
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-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.<br>
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Thanks for the support, love and prayers. The Koozershttp://www.blogger.com/profile/04256209375225522353noreply@blogger.com8tag:blogger.com,1999:blog-7213394306620338343.post-53611554008738156062014-08-30T17:38:00.000-07:002014-08-30T17:38:14.895-07:00Seizure Response DogWe 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.<br />
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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. <br />
<div id="stcpDiv" style="left: -1988px; position: absolute; top: -1999px;">
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. <br /> - See more at: http://www.youcaring.com/pet-expenses/seizure-response-dog-for-piper/220501#sthash.blHRimsx.dpuf</div>
<br />
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!<br />
<br />
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. <br />
here is a picture of a golden doodle, this is not our dog but an example of what they look like<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhD6RU3Ku-xLZsznf8R2Tbq72yooI_TS6_CVFk_xEVVp0lGVu_j4phVs8cT4kdtsACih4p5cJvYJH7eGy7xbVaik4HcV0N0jqjSLWj_wSaSHUNd_8F1MaHjCQ-nxuDDnF1TpscJXsEFJ5A/s1600/cargo4_sm.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhD6RU3Ku-xLZsznf8R2Tbq72yooI_TS6_CVFk_xEVVp0lGVu_j4phVs8cT4kdtsACih4p5cJvYJH7eGy7xbVaik4HcV0N0jqjSLWj_wSaSHUNd_8F1MaHjCQ-nxuDDnF1TpscJXsEFJ5A/s1600/cargo4_sm.jpg" height="320" width="233" /></a></div>
<br />
If you want to learn more about the company, the fundraiser or donations go to this link<br />
<br />
<a href="http://www.youcaring.com/pet-expenses/seizure-response-dog-for-piper/220501">http://www.youcaring.com/pet-expenses/seizure-response-dog-for-piper/220501</a><br />
<br />
We just want to thank everyone for donations, spreading the word and continuing to support our family. We love you all!<br />
<div id="stcpDiv" style="left: -1988px; position: absolute; top: -1999px;">
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</div>
<div id="stcpDiv" style="left: -1988px; position: absolute; top: -1999px;">
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</div>
<div id="stcpDiv" style="left: -1988px; position: absolute; top: -1999px;">
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</div>
The Koozershttp://www.blogger.com/profile/04256209375225522353noreply@blogger.com20tag:blogger.com,1999:blog-7213394306620338343.post-10644398506020486012014-06-11T10:36:00.001-07:002014-06-11T10:44:26.709-07:00Keeping busy!<div class="separator" style="clear: both;"><br></div>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. <div><br></div><div>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!</div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHNlxD5C-xoKPRhhJqDlkBSzR7qTKRVdwDoNmqYupR7fOSPPyt0hSoMm7XaPCO1lzapkKZYvBqxR-WXNnuZaTEsX03eXtdtCMrBi0Yz0kFVb-8xAOzFxWhIQovnFbsT_F04VxQmP8v9j0/s640/blogger-image--2115120262.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjHNlxD5C-xoKPRhhJqDlkBSzR7qTKRVdwDoNmqYupR7fOSPPyt0hSoMm7XaPCO1lzapkKZYvBqxR-WXNnuZaTEsX03eXtdtCMrBi0Yz0kFVb-8xAOzFxWhIQovnFbsT_F04VxQmP8v9j0/s640/blogger-image--2115120262.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">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. <div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQyAn18ZXD6_2kNdDvGmmiKfk2DsHuZZk09_cQPqPRWeu7KfnTRzg_deP6WAxC3puDN0n99d4rGJfxdZBrH6JEMSXms8RXFAMW4yiu3wqOc0xmkkH3vpVZtdbCsDG5E7Hr-eJWPBAJ1F4/s640/blogger-image--45088385.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjQyAn18ZXD6_2kNdDvGmmiKfk2DsHuZZk09_cQPqPRWeu7KfnTRzg_deP6WAxC3puDN0n99d4rGJfxdZBrH6JEMSXms8RXFAMW4yiu3wqOc0xmkkH3vpVZtdbCsDG5E7Hr-eJWPBAJ1F4/s640/blogger-image--45088385.jpg"></a></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;"><br></div><div class="separator" style="clear: both;">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! <div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1lGlqSi_6tHDF3APA3cTEshdwvjKAfuReMY3Nq8OYzU54IDhyphenhyphenqXx8cVuul4L6VFGUcSeJI7zxlov8HDJPjC0g-kTl70UxlGe5PrQASccbYkGXhFS227nfknjhewC6hYwUY4LnSGQzxqU/s640/blogger-image--1845966110.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1lGlqSi_6tHDF3APA3cTEshdwvjKAfuReMY3Nq8OYzU54IDhyphenhyphenqXx8cVuul4L6VFGUcSeJI7zxlov8HDJPjC0g-kTl70UxlGe5PrQASccbYkGXhFS227nfknjhewC6hYwUY4LnSGQzxqU/s640/blogger-image--1845966110.jpg"></a><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj1lGlqSi_6tHDF3APA3cTEshdwvjKAfuReMY3Nq8OYzU54IDhyphenhyphenqXx8cVuul4L6VFGUcSeJI7zxlov8HDJPjC0g-kTl70UxlGe5PrQASccbYkGXhFS227nfknjhewC6hYwUY4LnSGQzxqU/s640/blogger-image--1845966110.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"></a><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJrcXaERrrXrKuMTPwJEmo6BpuJ73j55FZHMpssOO_sJzk9MT4DibJg881H5PnFVWRFtmW8lVd764vQYBuVCX9Wr3YJ-hiOrWUYEzvy4v2vuGRXscoRPGW_2W-W1dR28elbKZ4bMbenyU/s640/blogger-image-150657036.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJrcXaERrrXrKuMTPwJEmo6BpuJ73j55FZHMpssOO_sJzk9MT4DibJg881H5PnFVWRFtmW8lVd764vQYBuVCX9Wr3YJ-hiOrWUYEzvy4v2vuGRXscoRPGW_2W-W1dR28elbKZ4bMbenyU/s640/blogger-image-150657036.jpg"></a></div></div></div></div><br></div><div><br></div><div>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 </div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-qfibbR64uRfHJSOkWGyRlLm_BVxdhuASZuGjaq9LdH1sGdt3CEDEogns6zl_ZwJ8iWiQWiIBBn0QIR3kUd831b798dEeoCNsoJ3iJugJvXs0RKbcfmHZhIe37RGDe8doRlVCAlhEzqs/s640/blogger-image--793161876.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh-qfibbR64uRfHJSOkWGyRlLm_BVxdhuASZuGjaq9LdH1sGdt3CEDEogns6zl_ZwJ8iWiQWiIBBn0QIR3kUd831b798dEeoCNsoJ3iJugJvXs0RKbcfmHZhIe37RGDe8doRlVCAlhEzqs/s640/blogger-image--793161876.jpg"></a></div><br></div><div><br></div><div><br></div><div><br></div><div><br></div><div><br></div><div>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. </div><div><br></div><div>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 :)</div>The Koozershttp://www.blogger.com/profile/04256209375225522353noreply@blogger.com1tag:blogger.com,1999:blog-7213394306620338343.post-68687553104212560542014-04-08T06:47:00.001-07:002014-04-08T08:01:19.359-07:00A day in the life of a special needs parentI am writing this post mostly to vent but also to give you a glimpse into our visit at the hospital. <div><br></div><div>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. </div><div><br></div><div>Just a few of the conversations I had during our stay....</div><div><br></div><div>Me (7:30am at the hospital registration): Good morning, we are here to check in for our EEG. </div><div>Receptionist: Great! Thanks for getting here on time. </div><div>(5 min check in)</div><div>Receptionist: If you will just have a seat over there it should be about an hour before we will have a room ready. </div><div>Me: So, why did we get here this early? We could have been 45 min late and still had plenty of time?</div><div>Receptionist: Yes</div><div><br></div><div><br></div><div><span style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif;">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. </span></div><div>Me: Do you have her medical records from TN that contain her entire history? </div><div>P.A.: Yes, I do, but I would like to hear them from your mouth.</div><div>Me: Alright then, but you are going to have to speak a little louder. </div><div><br></div><div>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. </div><div>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. </div><div>Me: I think you can remove the skin. I've actually done it before. </div><div>Lunch lady: Ok, we can TRY. I will have to send other items in place of the two other choices that Piper can handle. </div><div><br></div><div>Here is what she sent </div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjADtTZUABCbMPKAxnslIuSJ1Z0Uf8cUG5PXlFN7lQpO3oG6tXCxTYo8UUT1AtKAxqADOO3lGcwDQ5l65Ipu8bXk6JRBpN_9N7Et9nT0z_qXRB-Hzy5KD6n2kjFt-iodGXWggGQHbKIvP8/s640/blogger-image--539071856.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjADtTZUABCbMPKAxnslIuSJ1Z0Uf8cUG5PXlFN7lQpO3oG6tXCxTYo8UUT1AtKAxqADOO3lGcwDQ5l65Ipu8bXk6JRBpN_9N7Et9nT0z_qXRB-Hzy5KD6n2kjFt-iodGXWggGQHbKIvP8/s640/blogger-image--539071856.jpg"></a></div><br></div><div><br></div><div>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. </div><div>RN: ok, sounds good. </div><div>(20 min later after Piper has fallen asleep)</div><div>RN: Just checking in on you, I need to know what Piper has eaten today. (Wakes Piper up, triggers seizure)</div><div>Me: speechless </div><div><br></div><div>Night RN: If Piper has a seizure lasting over 5 minutes it's our protocol to give rescue medicine. </div><div>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?</div><div>RN: Yes, I did and she told me the exact same thing you did. </div><div>Me: So what's the problem?</div><div>RN: It's our protocol to administer rescue meds after 5 min. </div><div>me: Looks Like the day nurse and Neurologist didn't follow protocol. </div><div>RN: Oh, I guess you are right. </div><div><br></div><div>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. </div><div>me: What? Why?</div><div>RN: We have to use our own meds but do not have liquid fish oil.</div><div>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?</div><div>RN: She has to take the pill provided by the hospital. </div><div>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. </div><div>(30 min later)</div><div>RN: You are welcome to give her anything you want. </div><div><br></div><div>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??!</div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZOL4eG4UYgyfPgiV4qdmxC7SsjYoGNN4uO6ywrR9oD8YX9bnauwvNdJ4Mk3r__LWHuoxx7eKUNtRZhTQ_KOhJlBCHLAN-Gkdq7gIGtThG_DiLfUlIm1ZApGyOpPrU2heBTjx2nsv3Tzo/s640/blogger-image-1085621688.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZOL4eG4UYgyfPgiV4qdmxC7SsjYoGNN4uO6ywrR9oD8YX9bnauwvNdJ4Mk3r__LWHuoxx7eKUNtRZhTQ_KOhJlBCHLAN-Gkdq7gIGtThG_DiLfUlIm1ZApGyOpPrU2heBTjx2nsv3Tzo/s640/blogger-image-1085621688.jpg"></a></div><br></div><div>Night Nurse: If Piper has a seizure tonight please push the red marker button. </div><div>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?</div><div>Nurse: You are planning on sleeping?</div><div><br></div><div>Day nurse: You have to be in the room with Piper at all times.</div><div>Me: No problem</div><div>Nurse: That means all day and night, you can't go home to sleep. </div><div>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) </div><div><br></div><div><br></div><div>(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) </div><div><br></div><div>Nurse: What's wrong with Piper?</div><div>Me: You woke her up at 4, triggered a seizure and she couldn't get back to sleep.</div><div>Nurse: Oh, poor thing! </div><div>Me:You couldn't hear the screaming?</div><div>Nurse: I sure did, poor baby! By the way, you can't get in he bed with her, it's protocol. </div><div>Me: I thought we agreed our protocol was no interruptions. Looks like we both are in trouble. </div><div><br></div><div><br></div><div>Me to nurse: Two of Piper's leads have fallen off and I am afraid it will affect the results of the study. </div><div>Nurse: I don't think they are that important. </div><div>Me: You don't think the things that are measuring seizure activity are important to the seizure study we are doing??</div><div>Nurse: I'll try to find someone to fix it but no promises. </div><div>Me: I think it's time for use to go home. </div><div><br></div><div> </div>The Koozershttp://www.blogger.com/profile/04256209375225522353noreply@blogger.com8tag:blogger.com,1999:blog-7213394306620338343.post-84009453029735495442014-04-05T08:06:00.000-07:002014-04-05T08:12:42.950-07:00Where 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!<br>
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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.<br>
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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.<br>
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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!<br>
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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. <br>
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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...<br>
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<br>We thank you all for the continued support and love!<br>
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<br>The Koozershttp://www.blogger.com/profile/04256209375225522353noreply@blogger.com1tag:blogger.com,1999:blog-7213394306620338343.post-60991089681737521552014-02-25T17:40:00.001-08:002014-02-25T17:40:26.344-08:00Sick and tired of being sick!<span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">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. </span><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">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. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"> 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. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">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. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">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. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">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! </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);">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. </span></div><div><span style="-webkit-text-size-adjust: auto; background-color: rgba(255, 255, 255, 0);"><br></span></div><div><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikwC8wNle1FDM4LUVu_0NxP15d4PUC4iA8JG9CSfNImvC-L1dveoTbf_RE2ninunZqy5rI5L-YijXaEmYgBBRcldG0jNkonYXNloGIPDXL7YKk_WHu6efO9b6aG_yXQ5E4no6r4mNhmzk/s640/blogger-image-1280862136.jpg" imageanchor="1" style="font-family: 'Helvetica Neue Light', HelveticaNeue-Light, helvetica, arial, sans-serif; -webkit-text-size-adjust: auto; margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEikwC8wNle1FDM4LUVu_0NxP15d4PUC4iA8JG9CSfNImvC-L1dveoTbf_RE2ninunZqy5rI5L-YijXaEmYgBBRcldG0jNkonYXNloGIPDXL7YKk_WHu6efO9b6aG_yXQ5E4no6r4mNhmzk/s640/blogger-image-1280862136.jpg"></a></div><div><br></div><div><div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeb2saqBbsKR14JsiCnve3MTVr-QVB220y1guUznYAa1FS2eeEJxv6CEShgtVvl5nEmJLA7tHyKK85Fe3G8ClAuw_xfAj_x_93CiSo-WRdao7oeRO232-FVO1kpK5qp3Dyq0xwyuBPpeE/s640/blogger-image-875445135.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgeb2saqBbsKR14JsiCnve3MTVr-QVB220y1guUznYAa1FS2eeEJxv6CEShgtVvl5nEmJLA7tHyKK85Fe3G8ClAuw_xfAj_x_93CiSo-WRdao7oeRO232-FVO1kpK5qp3Dyq0xwyuBPpeE/s640/blogger-image-875445135.jpg"></a></div><br></div>The Koozershttp://www.blogger.com/profile/04256209375225522353noreply@blogger.com2tag:blogger.com,1999:blog-7213394306620338343.post-78785859993279880042014-01-09T08:20:00.000-08:002014-01-09T08:20:04.215-08:00Evan and Piper updatesWell 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.<br />
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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.<br />
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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.<br />
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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!<br />
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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. The Koozershttp://www.blogger.com/profile/04256209375225522353noreply@blogger.com6tag:blogger.com,1999:blog-7213394306620338343.post-53768984347900839462013-11-17T10:51:00.000-08:002013-11-17T10:51:13.522-08:00A father's perspective Justin wrote this and I couldn't have said it better....<br />
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<div class="MsoNormal">
It’s a <span class="aBn" data-term="goog_1226628530" tabindex="0"><span class="aQJ">Friday</span></span> night at 10 o’oclock and I just got out of
bed, unable to sleep due to another episode that disturbs the calmness of an
unfamiliar apartment in a new city. The lack of sparkle in her eyes as she
enters yet another cluster of spasms tears the peaceful slumber away from my
child. Hour after hour, waiting for the next one to come. Counting. Tracking.
Watching. There is nothing we can do. They come at all hours of the day.
Without warning. Everything is dropped to helplessly watch. Is she still
breathing? Does she need emergency medication? When will it stop?</div>
<div class="MsoNormal">
Everyone tells you that having a kid will change your life.
I don’t think this is what they meant. </div>
<div class="MsoNormal">
For the past two years, my wife and I have watched our first
born seize uncontrollably every single day. Piper was born with a rare genetic
condition, Aicardi Syndrome, which resulted in the corpus callosum to never
develop and an intractable form of epilepsy called Infantile Spasms. Since the
age of three months, she has seized every day. This is definitely not what I
expected fatherhood to be. But, I have learned some truisms in these past two
years. I have learned what unconditional love really is. I have learned that an
education bought at an elite school of medicine does not lead to supreme
knowledge. I have learned that you can only rely on yourself and the wise
people around you.</div>
<div class="MsoNormal">
Over the past two years, my wife and I have battled for our
daughter. Every stone has been turned. 17 doctors, 9 anti-epilepsy drugs, 1 severe
diet, 6 supplements, 50,000+ seizures, 1,300 miles, thousands of friends, 1
last doctor prescribed drug that could lead to liver failure. We have learned
to live by numbers. Numbers that have altered our perspective on parenthood.
Numbers that bring a community together for a controversy.</div>
<div class="MsoNormal">
On August 1, 2013, my wife and daughter entered the state of
Colorado. We have moved away from those thousands of friends to join a new
controversial community. A community that has become addicted to marijuana. We
have moved to Colorado to take part in a movement of parents of epileptic
children who are trying cannabis as a last ditch effort to heal their children.
<span> </span></div>
<div class="MsoNormal">
Marijuana. The word has carries some weight that will not
set easy with many of you. Trust me, it was not an easy decision. I too once
believed that medical marijuana was a smokescreen for people to use the drug
recreationally. Not too long ago, my mind was changed. I learned of a 5 year
old girl named Charlotte Figi. Charlotte has Dravet Syndrome, another form of
intractable epilepsy. Charlotte’s parents were in a similar situation as us and
were at the end of pharmaceutical treatment. Charlotte’s parents then found a
group of brothers growing a strain of marijuana with low THC (the only psychoactive
compound in the plant) and high CBD (cannabidiol, another compound in the
plant). They had nothing to lose. Guess what…it worked. The first dose,
Charlotte went a week without a seizure. As a frame of reference, she had 300
the week before.</div>
<div class="MsoNormal">
Hope. </div>
<div class="MsoNormal">
She’s not the only one. Now hundreds of parents, including
many from Tennessee, are moving their children across the country to get access
to the now named Charlotte’s Web. There’s been some media. Perhaps you’ve
heard. <span> </span>Guess what…it’s working for a lot
of kids.</div>
<div class="MsoNormal">
To give you an idea of our expectations, we do not think it
will work. But, we don’t think anything will work at this point. Another truism,
skepticism. We have accepted that this is our daughter and she has influenced
more lives in two years than I have in my 28. She has a purpose, to teach. </div>
<div class="MsoNormal">
Piper started on Charlotte’s Web on October 24<sup>th</sup>.
We give three doses per day in an oil form. For three weeks we have been
increasing the dose. It’s never easy. </div>
<div class="MsoNormal">
This week, we have had two newspaper articles and two local
news channels report on our journey. Through social media, I have read 600+
comments on these reports and come across 3 dissenters. I don’t know what is
coming next, but if you are still reading, I ask for you to remove your
assumptions, your fears, and the unknown and ask yourself why. </div>
<div class="MsoNormal">
These past three weeks, we have seen bad days, like today,
but we have seen some of the best days. Compared to one of the worst days, Valentine’s
Day 2012 – 379 spasms. Three days this week she has had 2-3 spasms. Can we say
it is attributed to cannabis? I’m optimistic, but it’s not where I want to be –
zero</div>
I don’t know where our journey will take us, but I hope that
Piper has fulfilled her purpose and taught you to examine the possibility. I
don’t know that we will ever be able to come The Koozershttp://www.blogger.com/profile/04256209375225522353noreply@blogger.com2tag:blogger.com,1999:blog-7213394306620338343.post-78510547501089448592013-11-09T12:00:00.000-08:002013-11-09T12:00:34.299-08:00Charlotte's Web First Two WeeksPiper had her first dose of CW on October 24. We are hoping this is a date we will always remember, a date that replaces the anniversary of the onset of seizures, and other things we would like to forget. To be honest the first two weeks have been rocky. The day after her first dose, I started having symptoms of a stomach bug. Piper did not seem to have any symptoms so I figured it was something I ate. After the initial dose, I didn't see any immediate changes except she was a little sleepier than normal. The next day she looked terrible and had symptoms of a stomach bug too. She slept more than I have seen her sleep in a very long time. I hoped it was the new medicine calming her down and letting her get some rest but it seemed she was just her fighting off a virus. It took five days for her to start feeling better and then she had three excellent days! Halloween was the best day she has every had in her life. She was smiling, giggling and playing all day. She was very aware and responsive to us. I think she was excited to finally have her dada home. She also had the closest to a seizure free day that we have ever seen, she only had on single spasm! We haven't had that kind of hope in a very long time.<br />
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Since Halloween we have had a rough time. We noticed that she was cutting a molar and started seeing an increase in seizure activity. Teething has always been a trigger of seizures but it has been almost a year since she had a tooth come in so we don't remember how bad it is. Seizures have been all of the place and we have seen some pretty rough ones. We have seen tonic "typical" seizures that we rarely ever see. She had 5 in one day and that never happens. We normally see 1-2 tonic seizures a month. We have used "rescue" diazepam multiple times to help her body get a break from the seizures. We noticed three days ago that she has another tooth coming in as well!We are praying that teething is the cause of all of the bad seizure activity and that she will get over it soon. We have heard from a few doctors and the dentist that teething is a developmental milestone. The interesting thing is right after we started CBD oil she has an influx of teeth appearing and we are curious if there is a correlation.<br />
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Since we have so many additional factors like sickness and teething it has been hard to see how well the medicine is working. We do know that she has never had a seizure free day and she was very close and that is very promising. When she had a break between being sick and teething she has some really good days so we think the medicine is helping but we won't be able to tell how well until she feels better. She is still on a low dose and we will be increasing to her full dose over the next two weeks. We have talked to a few families who saw results after 4-6 months of adjusting dose and weaning pharmaceuticals and this may be the case for Piper. <br />
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We have been involved in getting our story out to the public. We were contacted by a reporter from the Salt Lake City Tribune about a week before we started treatment. She was interested in doing a story about us and wanted to fly in to Denver ASAP to interview us. She actually was able to be here for Piper's first dose of the oil and did an interview. The story should run tomorrow and we will send out the link for everyone to read. We also were able to participate in an interview done by the local news in Denver. All of the families who are involved with the Realm of Caring met at the grow and were able to tour the grow houses and see the plants. While we were being interviewed Piper had a seizure on camera and made the news lady cry. I guess it was the right time to have one since they are trying to show people how desperately our children need this treatment. <br />
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We continue to pray and have hope that we are doing the right thing for Piper. Even if it doesn't help her as much as we want we have seen how much it has helped other children. I sat next to Charlotte Figi at dinner the other night and could not take my eyes off of her. It is truly amazing what this oil has done for her. She was talking, playing and fed herself dinner. To see where she was in the videos at her worst point and to see her in person, thriving, was truly amazing. We hope that we can at least spread the word about this treatment so that one day every sick child has a chance to try it without having to move across the country. The Koozershttp://www.blogger.com/profile/04256209375225522353noreply@blogger.com2tag:blogger.com,1999:blog-7213394306620338343.post-65225043439942434112013-10-20T15:55:00.000-07:002013-10-20T15:55:03.876-07:00Overdue updateSorry it has taken so long to write an update. Things have been pretty much the same as always here so I haven't had much to write about. We have been enjoying our time here and exploring the city. Justin finally made it out to visit at the beginning of October. After 7 weeks of being apart, it was so good to finally see him. While he has been here we have been able to explore Denver and just spend time together as a family. He couldn't believe how much my belly had grown while he was away! He will be going back to Knoxville on Tuesday and will be making the official move in November. <br />
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Piper's Nana and Papa came out to visit and we had tons of fun and hated to see them go. We all celebrated my birthday and found some great restaurants in town. We went for a hike in Colorado Springs and toured the Coors brewery. I heard the beer was delicious. We are so lucky to have family that is able to visit. Being so far away from family has been a challenge for all of us but we just keep in mind the reason why we are here and it helps. January will be here in no time and we will get to see the rest of the family then.<br />
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We found out last week that the harvest is done and that the CBD oil is being made now. We may be able to pick up her medicine on Thursday!!!! This is what we have been waiting so patiently for and it seems unreal that it is finally here. We will go to a new patient meeting tomorrow to learn more about dosing, etc. We are so excited but it is also a little scary. This treatment could change her life but we also know it may not work as well for her. We are praying so hard that she gets the relief she deserves from these terrible seizures. I am filled with so many emotions (pregnancy enhanced) that have been building up the past few months. I will update more frequently because I know you are all as anxious as us to see what happens with the treatment. Please pray that this is finally the answer to this nightmare.<br />
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This week we will also go for an evaluation with the early intervention system here to get Piper started again in therapy services. I have been putting it off because it has been so nice to not worry and stress out about getting her to appointments. Her days are never consistent so it was hard to have a normal schedule. They do all in home services here so hopefully it will be a little easier for both of us. I know she needs to continue therapy but its really hard to see her so upset and unhappy. We also will be applying for a waiver that was not available in TN that provides assistance for families who do not qualify for Medicaid. Under this waiver I could actually get paid to be Piper's caregiver if I obtain my CNA. The waiver also provides financial assistance for respite care, nursing services and modifications to your home for accessibility. <br />
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I have felt really good throughout this pregnancy and I am in my 27th week. I have been exercising and keeping in shape to be able to lift and keep up with Piper. So far I have felt stronger than I did before I got pregnant! Imagine doing squats with 30 lbs at least 50 times a day. It is a workout just taking care of Piper! I am just now starting to enter the uncomfortable phase but I still have a lot of energy. We have been seeing a high risk specialist just to be safe. So far everything has been great and we have had no issues. He is healthy and growing fast. He is kicking and moving constantly and is so strong. He is actually a lot bigger than average so I will be doing my gestational diabetes test this Friday to see if that has anything to do with his large size. Hopefully his growth will level out over the next few weeks because it may increase my chances of having another c-section if he is large. I really don't want to have surgery again since the recovery was so hard but we won't know more until later. We are just happy he is healthy and will worry about the rest of it later. We have been so preoccupied with Piper we keep forgetting that we will have a new little one in just a few months! We are so excited to meet him!<br />
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<br />The Koozershttp://www.blogger.com/profile/04256209375225522353noreply@blogger.com0tag:blogger.com,1999:blog-7213394306620338343.post-42086882713085682752013-09-03T10:20:00.001-07:002013-09-03T10:20:41.829-07:00WaitingWaiting.... My least favorite thing to do. After the past two years you would think I have mastered patience. If anything, I think I have become more impatient then when this all started. We are always waiting on something. It becomes an internal struggle because we want the time to pass quickly to get to what we are waiting for but as time passes Piper seems to be stuck in the same place. The cliche thing you hear from parents, "they grow up so fast". They do, but for us she is growing bigger but basically still the same child as we saw at 6months when it comes to physical, cognitive and emotional aspects. It's a very disheartening thing to watch. It's like the world around you is going full speed but you are stuck in time. It makes it much harder to see children her age and what she is not able to do. I try not to think this way but I'm only human. <div><br></div><div>As most of you who have been following us (we thank you) know; Piper, my dad and I moved to Denver at the beginning of August. After numerous failures with seizure medication we chose to try cannabis therapy. Picking up and leaving everything you know does not sound easy but surprisingly it has not been that bad. We are adjusting well and are ready to try this new treatment. She is legal to start treatment when the product is available. We knew there would be waiting involved and were not surprised. It's much harder waiting here knowing that very close to us could be the thing that finally helps her. We are on the waiting list with the group that treats pediatric patients and if things go well we may be able to start in October. (Prayers please!) <br><div><br></div><div>Another hurdle for Justin and I is being away from each other. We haven't seen Justin in 2 weeks and he won't be visiting again for 5 more weeks. This is an enormous challenge for both of us. We are very close and not being able to talk about things and make decisions together is very hard. I know he misses Piper very much and hates to hear of her recent rough days. Justin's easy going personality and jokes always help change the mood on the really bad days. We could use some of that right now. He also hasn't felt Evan kick yet, which I get to feel all day.I know it must be killing him to miss out on so much. It takes an emotional toll on your heart but we are both trying to stay strong for Piper. We made this choice and knew it would be hard. He will be visiting in October and back to traveling until thanksgiving. Hopefully, he will be able to move out here by then. I am counting down the days. </div><div><br></div><div>I know you are just as eager as we are to see if this treatment works. I will do my best to keep everyone updated! </div><div> </div></div>The Koozershttp://www.blogger.com/profile/04256209375225522353noreply@blogger.com2tag:blogger.com,1999:blog-7213394306620338343.post-48671051487746913812013-06-26T16:24:00.001-07:002013-06-26T16:24:57.125-07:00Le BonheurWe will be going to Le Bonheur children's hospital in Memphis on Sunday to do a complete seizure study with some technology that is not available here in town. Our last EEG gave us results that were pretty unexpected. Piper has been having a new or modified type of seizure that did not show up on the EEG. We think that these seizures are originating deeper in her brain and cannot be read by a typical EEG. Our neurologist was pleased with the results on paper and suggested that these new seizures are random body movements due to a poorly controlled motor system. We didn't agree and based on our experience of watching seizures, we know that they are in fact some type of seizure. So we talked with him about other tests that can detect deep brain seizures. There are only a few hospitals in the country with this technology and Le Bonheur is one of them. Advanced testing from a team of epileptologists will be done to evaluate and determine if there is any new information to be learned. The evaluation usually takes a week and she will have all of the testing done in a few days. It may not be the best few days for her but it will definitely be nice to have it all done in a shorter period of time. <br />
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As most of you know we have exhausted our resources as far as anticonvulsants go. At 22 months old she has been on 9 medications and the ketogenic diet. Only one of these medicines have shown to be effective and does not control seizures completely. This medication has the potential to cause serious and irreversible vision loss. The longer you use it the more likely you are to have these side effects. If things stay the same she will not be coming off this medicine anytime soon. There are more seizure medications out there but the side effects are absolutely terrible. We know from experience what these medications can do. We have had a drugged up, zombie like child and do not want to see that again. Her current medications make her sleepy but not able to sleep, aggressive and just in a bad mood for hours after she gets them. One of the medications we keep getting recommended has caused liver failure (which kills you) in many patients, especially under the age of two. They do routine testing to check if the levels are toxic but once they are there is nothing you can do about it. We don't feel comfortable with these circumstances and won't be trying this with Piper. That doesn't leave many choices. We have been researching for months on other options for Piper and have made some new decisions. We will see what the results say and go from there. <br />
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Even with the increase in sezuires, she is mostly happy and in a good mood. She hasn't had a chance to learn a lot of new things but is not regressing so that is good. She is improving with regards to eating, she can eat a variety of textures with no issues. Tonight she had fish sticks and carrots and ate the whole thing! I was very impressed.<br />
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For those of you who follow the blog regularly, I would like to add your email to a group list. We have some other issues that I would like to share with you about Piper but would rather not share with the whole world. In the next month I won't be updating the blog as much but will be sending out a group email. Please email me at AnnieKoozer22@gmail so I can add you to the list.<br />
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Thanks for the continued prayers, concerns and support! We appreciate you all. The Koozershttp://www.blogger.com/profile/04256209375225522353noreply@blogger.com1tag:blogger.com,1999:blog-7213394306620338343.post-56890542955547233142013-05-21T09:34:00.001-07:002013-05-21T10:14:21.324-07:00EEG results and next steps<div class="separator" style="clear: both;"><br></div>I haven't updated this in a while mostly because I don't have a lot of good things to say. The past 6 weeks have been really rough on all of us. Seizures are completely out of control and our options are slim. She has anywhere from 8-12 clusters of strong spasms that usually last 10-15 min each, sometimes longer. Most of these clusters occur at night so she never gets rest which triggers more during the day. We have cancelled therapy at least once a week and have given her rescue meds on a regular basis to just let her get some rest. We haven't seen this much activity since this all started. The most frustrating thing about it all is that this new activity did not show up on her most recent EEG. Our neurologist was actually pleased with the results from the study. We told him that although they did not show up they are in fact seizures. We have seen enough seizures to know that they are. He said it was most likely random body movements due to a poor nervous system. We disagree completely and have told him numerous times that something needs to be done. We have researched and suggested that these may be deep brain seizures that a regular EEG can't read. He agreed that it is possible but we would have to do a specialized test to confirm. The only place in Tennessee that has that machine is Memphis and he has connections there. We told him to try and get us an appointment ASAP. It really concerns me that we have to be this persistent just to get suggestions from our doctor. We feel like we are the doctors and really wish we had more support. I worry about other families who don't have the resources or personalities to question the doctor when it's needed. We really feel like a bigger city would be more beneficial for her needs but moving again is not something we want to think about. <div><br></div><div> The amount of seizure activity she has experience in the last two months has really taken a toll on her. She is tired, irritable and "out of it" all day. She never feels like doing anything and we haven't been going out a lot except for outside our house. Her seizures are so strong and violent that she needs to be in a place where we can lay her down. It's almost impossible to hold her while she is seizing. Her arms stiffen and slam on the ground so now we worry about her hurting herself. We both have taken some punches in the face. Not all of her episodes are this bad but about half of her daily clusters are. </div><div><br></div><div>She has regressed with most of the skills she was working on and isn't able to learn a lot of new things. She does have a couple hours a day where she is alert and plays but it's just not the same as it was a few months ago before this got bad. She just wants to sleep all day long. </div><div><br></div><div>The stress of all of this is hard for us but we are actually able to manage it better than we expected. Although Justin did get shingles a few weeks ago! The doctor asked him if he had a lot of stress at home...yeah just a little. He is fine and probably not happy I shared that with everyone. He is training for a big triathlon in the fall so that helps keep his mind off things. I went out of town last weekend for a bachelorette party and it was so fun! It was nice to have a break and hang out with friends. We will be celebrating our 3rd anniversary on the 29th and hopefully we can do something fun. </div><div><br></div><div>I will try to end on a positive note. We should be getting Piper's gait trainer soon and it will be fun to use at home. She spent 30 min in at PT last week and I think if we practice more she will get the hang of it. </div><div><br></div><div>Justin put up her swing at our house so we go out and enjoy that as much as we can. She loves it! She falls asleep every time. <div class="separator" style="clear: both;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqUn7RLE_9j4lKVH2F30CryZpIAn9clsxSqh7AnVn83zUAMHxDa12t_r86PeF1zsEeppnY_S3sTQP6YvNey685XPpAF9WAXbzo5v7W2K3B6fL8ktCOlcrSvbBUQ_9RonDIpbRR9PP8OzM/s640/blogger-image--103453425.jpg" imageanchor="1" style="-webkit-tap-highlight-color: rgba(26, 26, 26, 0.296875); -webkit-composition-fill-color: rgba(175, 192, 227, 0.230469); -webkit-composition-frame-color: rgba(77, 128, 180, 0.230469); margin-left: 1em; margin-right: 1em; "><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgqUn7RLE_9j4lKVH2F30CryZpIAn9clsxSqh7AnVn83zUAMHxDa12t_r86PeF1zsEeppnY_S3sTQP6YvNey685XPpAF9WAXbzo5v7W2K3B6fL8ktCOlcrSvbBUQ_9RonDIpbRR9PP8OzM/s640/blogger-image--103453425.jpg"></a></div></div>The Koozershttp://www.blogger.com/profile/04256209375225522353noreply@blogger.com1tag:blogger.com,1999:blog-7213394306620338343.post-67574671411812111292013-04-03T13:11:00.001-07:002013-04-03T13:11:53.082-07:00Seizures, seizures are no funWell it has been a long time since my last post. Honestly, March was one of the worst months Piper has had in a long time so I haven't had a lot of postivie things to write about. We have kept busy getting the stuff ready (tshirts, bracelets and brochures) for the expo this weekend and training for the 1/2 marathon. We are putting all of our energy into the big fundraiser this weekend for Piper and Aicardi syndrome. <br />
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She was sick for about 3 weeks in March and it started with a fever of 104. Since Piper has never had a fever it was a whole new experience for us. She had the worst seizures we have seen in a while and it was not fun at all. She had a pretty bad cold for about 2 weeks and then she started getting better. We thought she had finally recovered until her fever spiked up again. We took her to the doctor and found out she had an ear infection, which was another first for her. It took her about a week to start feeling better but she is still not back to her usual self and it has been a week since she had been off antibiotics.<br />
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During the time she was sick and now her seizures have been out of control. We know that is to be expected when she gets sick but now that she seems better we thought they would slow down a little. While she was sick we noticed a new "drop" seizure that we haven't seen before. We actually took her in yesterday to the neurologist to see what he thinks we should do. He wants us to do another 6 hour EEG next week so he can see what is going on. Not a lot of fun for either one of us but it needs to be done to see exactly what is going on. With all of the seizures she has started regressing again and we are reteaching skills. We always know this will be an issue but it is really hard to see her basically starting over and having to try so hard to learn again. <br />
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She is doing okay with feeding so that is a good sign. She has forgotten some skills so we are back to the basics again. While she was sick she missed a lot of therapy and we are back to just trying to get her to stay awake. The last physical therapy before she got sick she was using a gait trainer, which is a very big deal! She was strong enough to keep her body, head and chest up while taking a few steps. We were absolutely thrilled! Now the issue is getting her strength back up to be able to do that again. We learned today that both our speech therapist and physical therapist are moving in 8 weeks so we will have to start all over with someone new. So we will be losing 2 of our amazing therapists and we will really miss both of them. Luckily, we are all flexible and used to things constantly changing.<br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCWa6TBFZ2H35PdLACGssNPZjRjU3tAHwsuFYvnzOGILuADRwyIkPrlDV_pukpYa5ancbCZOy_p_3jr_Awx8Svee8ItDnWjTAliWPxqXEFQD0vo_wd3v0id25XUyRiClRdIvx_gwWKDYs/s1600/563500_10101310412035665_1885038543_n.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgCWa6TBFZ2H35PdLACGssNPZjRjU3tAHwsuFYvnzOGILuADRwyIkPrlDV_pukpYa5ancbCZOy_p_3jr_Awx8Svee8ItDnWjTAliWPxqXEFQD0vo_wd3v0id25XUyRiClRdIvx_gwWKDYs/s320/563500_10101310412035665_1885038543_n.jpg" width="240" /></a></div>
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using the gait trainer at therapy</div>
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In the middle of all the sickness and seizures Piper has had a few good days here and there. She had a great day Saturday and was happy and vocalized all day. We can only hope that we start to see more days like that. We are all praying that this weekend goes smoothly. We want to thank everyone who has supported us so far by purchasing tshirts and bracelets. We still have tons of shirts and look forward to selling more at the race this weekend. If you have a shirt, please wear in on Sunday while we run for our sweet girl. If you are downtown Saturday come by the convention center and see us. Thank for supporting our family and GO TEAM PIPER!<br />
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<br />The Koozershttp://www.blogger.com/profile/04256209375225522353noreply@blogger.com0tag:blogger.com,1999:blog-7213394306620338343.post-18231717321504824122013-01-08T14:12:00.000-08:002013-01-08T14:12:29.306-08:00ERG and MRI resultsPiper had an ERG and MRI done in December and we just got the results back.<br />
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"Electroretinography (ERG) is an eye test used to detect abnormal function of the retina
(the light-detecting portion of the eye). Specifically, in this test,
the light-sensitive cells of the eye, the rods and cones, and their
connecting ganglion cells in the retina are examined. During the test, an electrode is placed on the cornea
(at the front of the eye) to measure the electrical responses to light
of the cells that sense light in the retina at the back of the eye.
These cells are called the rods and cones."<br />
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Her previous <a href="http://www.medicinenet.com/electroretinography/article.htm">ERG</a> was done at 5 months old and showed normal results for her age. This one also showed normal results for her age. This is what we expected and these are good results.<br />
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Her MRI was done at this time last year and showed the malformations that are typical of Aicardi syndrome. She had <a href="http://ghr.nlm.nih.gov/condition/polymicrogyria">polymicrogyria</a>, hypoplasia of the white matter, arachnoid cysts and complete Agensis of the corpus callosum. <br />
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I am going to use my "kindergarten" explanations because it helps me understand, ha ha!<br />
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<u>Polymicrogyria </u>is basically wrinkles in the brain. Our brains have natural folds but her brain has extra folds that look like wrinkles. This can be a cause of the seizure activity, delays etc. <br />
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<u>Hypoplasia </u>means underdeveloped, so it her white matter did not develop properly. Your brain has white and gray matter. The analogy I have heard is the white and gray matter are like a computer network. The gray matter would be the computer, the white matter would be the network cables connecting the computers together. Basically, her "computer" isn't always connecting.<br />
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<u>Arachnoid cysts</u> are pockets of fluid in the brain that can stay the same size or get bigger.<br />
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<u>Complete Agenesis of the corpus callosum </u>is when the bundle of nerve fibers that connects the hemispheres is missing. Some girls with Aicardi have partial Agenesis and may have more success developmentally.<br />
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The most recent MRI appears to be the same as the last one. He was unable to compare from our previous MRI but will be doing this soon. She still has all of the malformations mentioned above but it doesn't seem like anything new is going on. I will keep everyone posted once he compares all of the test results.The Koozershttp://www.blogger.com/profile/04256209375225522353noreply@blogger.com1tag:blogger.com,1999:blog-7213394306620338343.post-25998074410378341362012-12-07T12:18:00.001-08:002012-12-07T12:18:07.744-08:00Overdue updateI have been slacking on my updates, sorry! <br />
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The last update was about sleep, or lack thereof. Things in that department are still the same. On a good day I can get her to take two 30 min naps. She is still not sleeping through the night and wakes up at 2am ready to play. Since we have tried all of the natural sleep aids our neurologist said our next step would be pharmaceutical sleep aids. We want to avoid that for now and just try to manage. She doesn't have seizures at night when she wakes so I guess it could be worse. <br />
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Seizures: In November we increased the Sabril medication in hopes of cutting down the number of spasms that have been creeping back up again. It seemed to work initially but now we are back to the same pattern as before. No luck there. We don't have any other safe medication options until she is older so we are just trying to manage what she is doing now. Her seizures usually come frequently in the morning and taper off later in the day. I have changed all of her weekly appointments so that we are at home most mornings. <br />
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Procedures: she will be doing a double procedure next Friday. She is having a MRI and ERG done. We have done both of these before but it was this time last year. These are just to check to see if anything has changed. Pray this goes smoothly and for good results. <br />
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Other doctors: Our appointments have slowed down a lot now that we are established with our doctors. We go for routine check ups as needed. She had her 15m check up with pediatrician and she has improved developmentally. She has gone from 4m to 9m on the social aspect and from 4m to 6m on the physical aspect (gross and fine motor). She has made big improvements with feeding as well. She has learned to chew and can eat a larger variety of textures and foods. We are working on teaching her to eat with her hands. She is not that interested and would much rather have someone else do the hard work. We are just pleased that she is motivated by food :)<br />
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Another issue we are facing is crying and "temper tantrums". We are not sure if this is an age appropriate behavior or if she is having pain she cannot communicate to us. Since her main form of communication is crying, I find myself carefully trying to decipher what her cries mean. I haven't cracked the code yet... If this is an age appropriate behavior then its good in a weird way. Lets just say we pray for patience often. :)<br />
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Overall things are good and we are managing challenges as best as we can. She is growing and learning little by little. She has a smile and giggle that melts out hearts. We look forward to enjoying the holidays and making great memories. <br />
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The Koozershttp://www.blogger.com/profile/04256209375225522353noreply@blogger.com0tag:blogger.com,1999:blog-7213394306620338343.post-46985817548065252382012-10-22T07:57:00.001-07:002012-10-22T07:57:19.705-07:00SleepSleep...it seems like a very distant memory. 14 months of sleep deprivation is really catching up with us. We feel like we have a newborn again and we are back to taking turns getting up with her. Piper has never been a good sleeper at night, she did sleep quite a bit during the day for a few months when she was little. Since we took her off phenobarbitial we have seen the least amount of sleep so far. We have been working on finally getting her on a schedule in hopes that she will sleep better. So far it hasn't helped much. We are also trying to get her to sleep in her crib in her room. On a good night she will sleep 4-6 hours not consecutively. She falls asleep easily but wakes after 3-4 hours and cries for 2-3 until she wears herself out again. We have tried sleep aids which help her fall asleep but don't help her stay asleep. <br />
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She has screaming meltdowns all day now and it's probably from being so tired. It's affecting her therapy sessions and we usually leave early because she is too tired. <br />
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We are doing a sleep study this evening and they need atleast 6 hours of sleep to get the data they need. Piper and I will go in at 7 and be released at 5:30am. If they don't get enough data we will have to repeat the study. She is not allowed to be held while we are doing the study so it should be interesting. I foresee a long night for both of us. <br />
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On a more positive note she is smiling an laughing a lot more. Justin can really make her giggle. It's awesome to see her so happy. The Koozershttp://www.blogger.com/profile/04256209375225522353noreply@blogger.com2tag:blogger.com,1999:blog-7213394306620338343.post-79463876565917008202012-10-03T06:20:00.001-07:002012-10-03T06:20:06.469-07:00Changes and new challengesI feel like I start every blog with saying its been a crazy few weeks, but again we have been busy. <br />
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We had a wonderful vacation and Piper was so happy the whole time. We began the phenobarbital wean last month so we started seeing real smiles around the time we went on vacation. Let's just say I have taken pictures non stop. It's been so long since we have seen our smiley pants and every smile just melts my heart. Piper has now been off of pheno for three days. We have seen a few more seizures but not a huge increase like last time. Hopefully it will just take a little while for her body to get adjusted. She is still smiling and has even laughed a few times. On really good days she is very vocal and her body is getting stronger. We didn't realize just how sedated she was. <br />
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On the other end of this she is finally able to feel the negative stuff too. Before she never cried unless she was having seizures. She never seemed to express any emotions. Boy, has that changed! Now she expresses them like never before. When she is tired, hungry, bored or hurting she just screams. I mean screaming at the top of her lungs. She screamed for three hours straight the other night and the second we got to therapy on Friday. We had to leave because we were disrupting the other kids. It's definitely something I have to get used to because she is normally so mellow. She had started screaming for attention and when she doesn't want to do something. She knows how to get what she wants! <br />
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In the past couple weeks she has really shown an interest in sitting. She actually will pull herself up from laying down to a sitting position without using her hands. She is determined to sit and gets very angry if she can't. It's a good thing because she is so stubborn and has already made progress. We should be getting a chair for the house that will help her learn to sit. <br />
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We got two pieces of equipment yesterday that took about 6 months to get. She now has a wheelchair/stroller that is very supportive and she already loves it. We took her out last night and she was able to see things around her and was very happy. We like it too, but its pretty heavy. It weighs 42lbs which is about twice as heavy as the chicco stroller we used before. I may have to lift some weights to stay strong enough to move it around all the time! Thanks to Piper I'm in the best shape of my life!! We also ordered a "stander" but our insurance denied it because they said its not medically necessary. We have started the appeal process so we will see what happens. Luckily, the company we use has extra equipment to loan out while people go through appeals. So were able to borrow a stander! This is really great because it will help her hips and feet since they are not working they way they should. She really likes it and was in it for over an hour yesterday. <br />
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Last week I took her to get fitted for leg braces. She will have braces that will help her feet stay flat. She will wear the braces all day. They will also be helpful when she is in the stander because they will force her legs and feet to be in the correct position. We will see how she will tolerate those!<br />
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In October she has a few procedures planned. She will be doing a sleep study to check for sleep apnea. We noticed that she is snoring at night and sometimes makes unusual noises. Children with low muscle tone don't always gasp for air while snoring the way they should. I will be taking her to Children's hospital for an overnight study to see what she is doing when she sleeps. It may be a challenge because since she is off the pheno she never sleeps. She doesn't take naps and only sleeps about 7-8 hours on a good night. Saturday and Sunday she slept 8 hours total. We have tried everything but she just doesn't sleep. Hopefully she will sleep for the study. <br />
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If she is not having sleep apnea we will have a follow up ERG. An ERG measures how your eyes are processing light. She has had one before and has to do one every 6 months to stay on her medication. They had to push our appointment back because if she does have sleep apnea then it is dangerous to sedate her for the ERG. We will see how the sleep study goes to determine the next step. <br />
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Overall, she has had a really good 3 weeks. She has a personality again which is great....even when she screams. She is very alert, playful and seems happy. Honestly, we just want her to be happy and as healthy as possible. We are very blessed!<div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpw8q3plHjLlpbNYlfyInGJwX49PvuwGYPl0XkinIEFxzpB4oGDoZpRMY0ZFqPiU41NfEqxOyrx2axkFPEmpuL2bHRi2mO-dz_fpAE_FvKib4OuZ6Q_fB0pK3zipQIBZnRpIFYAslPPcs/s640/blogger-image-1504588684.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgpw8q3plHjLlpbNYlfyInGJwX49PvuwGYPl0XkinIEFxzpB4oGDoZpRMY0ZFqPiU41NfEqxOyrx2axkFPEmpuL2bHRi2mO-dz_fpAE_FvKib4OuZ6Q_fB0pK3zipQIBZnRpIFYAslPPcs/s640/blogger-image-1504588684.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsx43Jv-GlqmBB8ZEOmGyoMOv84jsUGVcoLgSiAuB_EJUiAlW_EQn0bxy-RBj8zHa8DhNoqVrAP14sUzD86gjWIdlF6Vk9fYOdOaSB6Tm7tGrUHT8rPypXwg3XWCaDdWddHXsVx8S1IaM/s640/blogger-image-1982155034.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjsx43Jv-GlqmBB8ZEOmGyoMOv84jsUGVcoLgSiAuB_EJUiAlW_EQn0bxy-RBj8zHa8DhNoqVrAP14sUzD86gjWIdlF6Vk9fYOdOaSB6Tm7tGrUHT8rPypXwg3XWCaDdWddHXsVx8S1IaM/s640/blogger-image-1982155034.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZhH7dmjAqvMQmlhDfz7NIvz1-J40ouk_0fN6NUDhmxZAg_eLwnNbYEX6Hv5a5k8vv9mlGQ7Kc51p7pQ1QdxiHwC06bJSOQohGoY2pA_4ROUE7oLB58xbYN7zU42VcJnXxUd16AUbgc6o/s640/blogger-image--846175588.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgZhH7dmjAqvMQmlhDfz7NIvz1-J40ouk_0fN6NUDhmxZAg_eLwnNbYEX6Hv5a5k8vv9mlGQ7Kc51p7pQ1QdxiHwC06bJSOQohGoY2pA_4ROUE7oLB58xbYN7zU42VcJnXxUd16AUbgc6o/s640/blogger-image--846175588.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1uKhncv52NWB0zccqi4TOHbf_vlNnXuUUyUrmeEkVhoTRBad1uT5Kew7fXANf7SMLPpm9PwRa998RdWt4gRqAajXQecKOiEwpil4pqizhvasMKk0Xw-EkFUhRcczKTKapNxt8wcEUYpA/s640/blogger-image-160098577.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg1uKhncv52NWB0zccqi4TOHbf_vlNnXuUUyUrmeEkVhoTRBad1uT5Kew7fXANf7SMLPpm9PwRa998RdWt4gRqAajXQecKOiEwpil4pqizhvasMKk0Xw-EkFUhRcczKTKapNxt8wcEUYpA/s640/blogger-image-160098577.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrdGi_polprKNBLOscdVb3Wm3hXUe-cw-1GZ-fBqKHiZAzikjx9CtQVaJBV34Q_k8BWejK8pdvTz-YMwogL5O0yHRqAFJyWrkDXnm7crIPKJbJLq_zJFiB1Y4pMG79GVQgmXhUPpXdF8M/s640/blogger-image-46823277.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhrdGi_polprKNBLOscdVb3Wm3hXUe-cw-1GZ-fBqKHiZAzikjx9CtQVaJBV34Q_k8BWejK8pdvTz-YMwogL5O0yHRqAFJyWrkDXnm7crIPKJbJLq_zJFiB1Y4pMG79GVQgmXhUPpXdF8M/s640/blogger-image-46823277.jpg" /></a></div>The Koozershttp://www.blogger.com/profile/04256209375225522353noreply@blogger.com1tag:blogger.com,1999:blog-7213394306620338343.post-46965025164681101002012-09-11T14:33:00.000-07:002012-09-11T14:33:44.059-07:00Piper lately...<div class="separator" style="clear: both; text-align: center;"></div><div style="text-align: left;"><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;">Wow, it's almost been a month since I've posted anything! Time is</span></div><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">flying and Piper is keeping us on our toes. Since the weekend of her</div></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">birthday she hasn't been herself at all. Up until last week she wasn't</div></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">playing or eating much and really just seemed miserable. We noticed</div></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">that she has 4-6 teeth coming in so we thought that was the cause. Her</div></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">teeth have still not come through so now we think she was having</div></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">trouble with allergies. Whatever the cause it has really taken a toll</div></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">on her. With being sick she has a huge increase in seizures. The new</div></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">med seems to be preventing the big seizures so she just has spasms.</div></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">The problem is she is back up to having 150-200 a day. This leaves her</div></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">no time to feel like playing or exercising. She had no head control up</div></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">until just a few days ago. She basically regressed back to where we</div></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">started from.</div></span><div style="text-align: left;"><span style="color: #222222; font-family: arial, sans-serif; font-size: 13px;"><br />
</span></div><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">This week she started playing a little and her appetite came back</div></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">until yesterday evening. She was up all night coughing, wheezing,</div></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">runny nose , sneezing and threw up twice. She had a fever this morning</div></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">and we took her to the pediatrician. He seems to think its a sinus</div></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">infection so we started an antibiotic and hopefully she won't be</div></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">allergic like I am. We hope this will help with the breathing issues,</div></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">which are terrifying especially since she has poor head control and</div></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">the fear of her choking on all the junk in there. Let's just say none</div></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">of us slept well last night. She seems a little happier now so we will</div></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">see how she does the rest of the week. We are supposed to go on a</div></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">family vacation to the beach on Friday so praying we are able to go.</div></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">We sure do need one!</div></span><div style="text-align: left;"><span style="color: #222222; font-family: arial, sans-serif; font-size: 13px;"><br />
</span></div><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">As far as seizure control we met with he neurologist last week. Since</div></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">she is basically just having spasms we don't have many options at this</div></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">point for new meds. We are going to up her dose of the med that helps</div></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">these to see if we can control them better. Our only other option is a</div></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">medicine that has a high death rate in children under 2. Uh, I think</div></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">we will pass on that for now. We are finally taking her off</div></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">phenobarbital which we have been trying to do for months now. Praying</div></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">we will see a happier little girl. Last time we started the wean we</div></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">saw an enormous spike in seizures so we are a little scared.</div></span><div style="text-align: left;"><span style="color: #222222; font-family: arial, sans-serif; font-size: 13px;"><br />
</span></div><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">It's a lot to keep up with, believe me! Just keeping track of medicine</div></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">and dosage is a full time job now she has an antibiotic, sleeping aid</div></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">and multivitamin on top of everything else.</div></span><div style="text-align: left;"><span style="color: #222222; font-family: arial, sans-serif; font-size: 13px;"><br />
</span></div><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">We just ordered her wheelchair/stroller which will really help us out.</div></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">Thanks to the donations from the west high alumni and other friends we</div></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">are able to cover the cost for her equipment and her new car seat. We</div></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">can't thank you guys enough!!!</div></span><div style="text-align: left;"><span style="color: #222222; font-family: arial, sans-serif; font-size: 13px;"><br />
</span></div><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">Piper did get to have her first "play date" with her buddies Max and</div></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">Rylan this weekend and it was a lot of fun. Piper slept most of the</div></span><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">time but we had fun!</div></span><div style="text-align: left;"><span style="color: #222222; font-family: arial, sans-serif; font-size: 13px;"><br />
</span></div><span style="background-color: white; color: #222222; font-family: arial, sans-serif; font-size: 13px; text-align: -webkit-auto;"><div style="text-align: left;">I'll keep everyone updated!</div></span><br />
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The Koozershttp://www.blogger.com/profile/04256209375225522353noreply@blogger.com1tag:blogger.com,1999:blog-7213394306620338343.post-40881754485934130212012-08-19T06:24:00.001-07:002012-08-19T06:24:45.763-07:00One year reflection...you may need tissuesI have struggled for days on what to write about for this post. I have gone back and forth on whether or not I should just write a happy post or a truthful post. I finally decided to combine the two. <br />
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Birthday's are a huge celebration and should be a very happy day with lots of fun and love from people who care about you. We are celebrating Piper's birthday 3 times this week so I think we have that part covered. We are very excited and are celebrating her birthday but also celebrating that we have made it this far. It's a bittersweet day for me.<br />
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I made the mistake of reading all of my blog posts yesterday which brought back so many emotions. One of the hardest posts to read was the one I wrote a couple days after she was born. I was so happy,positive and hopeful in that post. We really thought everything was going to be okay. I had no idea how drastically our lives would change in just a few months. The reason I read the posts is because I thought it would help me see how much a I have grown over the past year. What it made me realize is I am not happy, hopeful and positive like I used to be. Not saying I don't have those feelings, they are just extremely different than they used to be. I have been conditioned to not be overly happy or overly sad...I guess it's my defense mechanism against the stress. <br />
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The other reason I took a trip down memory lane is to see how much she has grown and changed. This was also a little bittersweet too. She has definitely grown, and by that I mean physically. She is huge! She has gone from a tiny adorable baby into such a beautiful little girl. On the other side of this her development has not grown much. We all know that she may never meet those milestones we want her to and we have learned to accept that. It's something we all deal with and try to not let it upset us too much. It's just so hard to know an entire year has gone by and how long it has taken for her to do things a typical child would learn in a week. It's heartbreaking. To know that I have spent the past year just trying to teach her how to play seems crazy. I guess this really opened my eyes to how fast time flies but in her world most days time stands still. <br />
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This year has changed us so much. Some of the changes have made us much better people but some have really affected us in negative ways. Piper has made an impact in the hearts of many people in just a year. She has taught us unconditional love. She has taught us how to fight and defend our baby girl. She has taught us how to be even more educated, persistent, and stubborn. This experience has also made us feel hopeless, angry, bitter, disappointed and lost many times. They say the first year is the hardest. I think the first year is the hardest because it takes that long to be able to learn how to live your new life. <br />
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This year has been an enormous challenge. I wouldn't trade it for the world. I love this girl more than anything. We have no clue what the future holds for Piper but we thank God that he has allowed us to be her parents. She is amazing and even though it's so hard most of the time she is worth it. <br />
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HAPPY BIRTHDAY PIPER!!!!!<br />
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<div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiLVFshTLbh8Cf8EsA1MI85Ukxe764RCpDaFso_XnG48TaRcc0AaYZwfOGdBNSthlc9DjJrguEGtUn54dAiyyU0kaCnwqEtOI0NYYWW3hvv7o1ZDvmRxSenq-3eS34glzXc2WZsqEF5Qo/s640/blogger-image-1560600604.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgiLVFshTLbh8Cf8EsA1MI85Ukxe764RCpDaFso_XnG48TaRcc0AaYZwfOGdBNSthlc9DjJrguEGtUn54dAiyyU0kaCnwqEtOI0NYYWW3hvv7o1ZDvmRxSenq-3eS34glzXc2WZsqEF5Qo/s640/blogger-image-1560600604.jpg" /></a></div><div class="separator"style="clear: both; text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIKoukvl9E293ZZcaPG2wWmyTWLaqkr3bOi_TaLQezLcbHvsDTu4SaZAziqMQjW-9QjAMC_4yR91l_hceIvlUBb6H2LaMNNU_dG6FTHPDoRQXlmpQUI9VXaEK4rf1zzCgcOWLkmDrtYIE/s640/blogger-image--1163743575.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhIKoukvl9E293ZZcaPG2wWmyTWLaqkr3bOi_TaLQezLcbHvsDTu4SaZAziqMQjW-9QjAMC_4yR91l_hceIvlUBb6H2LaMNNU_dG6FTHPDoRQXlmpQUI9VXaEK4rf1zzCgcOWLkmDrtYIE/s640/blogger-image--1163743575.jpg" /></a></div>The Koozershttp://www.blogger.com/profile/04256209375225522353noreply@blogger.com3