The agenda so far--- I thought I would share our agenda for the time being. This most likely will change but for now, here you go: 3:15 – 3:45 UFO’s (unicycle team performs) 4:00 – 5:15 Scales and Tails 5:30 – 6:15 The Magic of Timothy 6:30 – 7:00 Happy Birthday and Balloons 7:00 Silent Auction Ends 7:00 – 7:45 Live Band 7:45 – 8:30 Belly Dancers How can you miss a minute? There is going to be such amazing performers, great activities and lots of great junk food! Ryan is building the obstacle course (the newest addition) as we speak. We have some great surprises that will happen as well! 52 days left!
I cant believe it. My anxiety is growing everyday. We are getting so much closer to Makenzie's Live, Laugh, Breathe event and there is still soooo SOOO SOOO SO much to do. BUT This post isn't for that. Its for our Kenzie leggings project. Can you believe its almost June. That means you only have 1 week to order from ALISHA for $5 leggings! AND you only have a few short weeks to get me the rest of the leggings that will get monogrammed with MRW... REMEMBER I need all those no later than June 14th as I am sending them off on June 15th!!!! I got a pretty big donation last week so ill update my numbers in the next week or so. If you don't want to buy leggings yourself or make them, you can donate with the button to the right and let me know how you would like your leggings money spent and ill do it for you. I can buy socks that ill make into leggings or I can order from Alisha. You let me know!!! I hope everyone is doing great and had a wonderful weekend!
So we have a whole blog just for MRW Live, Laugh Breathe!!! Its all so exciting and I cant wait to see what else comes out of this amazing name. This isnt going to end with the event in July or the Leggings project. It will be ongoing for the rest of our lives. This is one small thing we can do to keep our daughters legacy alive and help spread awarness for SMA/SMARD.
Thank you to everyone who is helping me every step of the way. I cant do it alone and you are all so amazing to step up and help out!Remember- You only have 14 more days to place your order with ALISHA in order for her to send me the leggings in one big order. (remember only $5 for each pair of baby leggings and for every 5 you buy she will throw in one for free) I will be sending any and all leggings I have to get embroidered on June 15th so hurry and get them to me so they can get the MRW logo on them. Makenzie's Live, Laugh, Breathe Event is coming along great! Its 2 months from today! I still have so much to do and so many people to still contact. Remember I still need lots of help so if your interested please let me know. I need everything from, volunteers to sponsors! I need silent auction items to just spreading the word and getting people to come! Its going to be an amazing event. We have lots of great entertainment. There will be tons of fun activities. AND lots of yummy food. Some of the newest items that have been added to our silent auction: * Uof U gift basket * Quilts * Gas Gift Card * Spa Gift Card * Movie Gift basket * Outdoor Mister set * Hair Gift Basket + tons of adorable crafts! This is just a few items. We have so many already. I cant wait to see what elses comes in. June 12th is our pizza party for anyone who would like to volunteer at the MRW Live, Laugh, Breathe Event. We will have lots of pizza and drinks from 6-7 pm at Shepard Park in Farmington. Please mark you calendars!!! (I am not expecting anyone to volunteer the entire night, Its only when you want to. I still want you to enjoy the event!!!) Make sure to grab our button to the right and spread the word through your blog/email and/or Facebook/Twitter/Myspace!!!
july 18 2009 was perfect. she came to us. she opened her eyes, she took her first breath. my world stopped. everything changed. she was my reason. before she was even born i was planning trips, play dates, outings, summer parties, winter parties, birthday parties. i was going to have the perfect outfit for her. i was going to make sure she had a blast and it was something she would remember for a lifetime.she lived 4 months 3 weeks and 4 days.during her life it was a party everyday for me.i celebrated every second of her life. we had 1 month birthday parties, we had park days, we had spa days.it just wasn't enough for an entire lifetime. i need more. while our muffin is dancing in heaven on July 17th 2010 we will be here celebrating her life. all 4 months, 3 weeks and 4 days of it. we are giving her a 1st birthday party. complete with the fairy theme i imagined. and You are ALL invited. your friends, your family, your neighbors- all invited. Makenzie's birthday will be an extravagant, out of this world, super cool, fun- fundraiser. all money raised will be donated to the Gwendolyn Strong Foundation to help fund SMA research. Makenzie had SMARD, however, there is currently no research being done solely on SMARD but through SMA we are hoping to find a cure for both these diseases. no child should have to go through this. no child should have to struggle to live. no parent should have to bury their child. this is what its about. to find a cure. Now I'm reaching out to all of you asking for your help. We are in need of volunteers. I have some amazing entertainers offer to volunteer their services for our event. I have some amazing people helping donate some food. But we will need more. For the amount of people we are planning (approx. 500 - 1000) and to help raise the money I am hoping ($10,000) I need all the help I can get. Some of the events include but are not limited to: *cotton candy machine *An amazing bounce house *Silent Auction *A Clown *The Magic of Timothy- the Magician *Food *A PRINCESS *Kenzie Fairy Boutique and seriously--- SO much more! Right now I am needing help with the following: * Items for the silent auction. * Sponsors- If you know someone or you are interested please let me know.I have different sponsor levels and your business will have the proper signage and publicity for the level they are at. * If you know any other entertainers that would be interested in donating their services. You can contact me through email and I can give you my phone number from there. firstname.lastname@example.org I hope you can all commit to coming to this event! You will not only be promised a fabulous time but you will be helping an amazing cause and celebrating an incredible little girl. Some information about SMA- SMA kills more infants and young children than any other inherited disease! -SMA is degenerative and terminal — often termed the “Lou Gehrig’s disease of babies”. -Although born seemingly healthy, babies with SMA eventually lose the ability to walk, crawl, sit, eat, breath, and even swallow. -1 in 40 people unknowingly carry the SMA gene. Few have a family history of the disease. -There is currently no treatment and no cure, but the National Institutes of Health (NIH) selected SMA as the disease closest to treatment of more than 600 neurological disorders. -Researchers estimate that a viable treatment and/or cure is attainable in as little as 5 years – IF provided adequate resources. -SMA is considered a "model" disease already benefiting research into ALS, Alzheimer's, Parkinson's, the muscular dystrophies and even some forms of cancer.For more information about SMA visit the Gwendolyn Strong Foundation.
Whenever I see a pair of leggings I think of Makenzie. Doesn't matter the color, the look, I imagine her skinny little chicken legs in them. This girl became famous in the PICU because of these things. One of the first things that came to mind after Kenzie passed away was to make these and donate them to the PICU in honor of our daughter. I have talked to several people at PCMC and they all love the idea. The thing that's great about these is you can not only wear them on your legs but your arms. They will keep these kids warm- seriously those rooms are freezing. Through the rest of this year I am asking for donations. They can come in the form of knee high adults socks that I can make into leggings, already made baby leggings(called baby legs ), or if you could donate a few dollars to help the project. On December 13 2010 my family and I are going to visit the children's hospital and give them our gifts. My goal is to donate close to 500 leggings! *Here are some examples of the adult KNEE high socks that can be donated. They need to be fun/funky/different patterns or solid colors (no boring white please) *For these socks, I was planning on sewing them myself along with some family members that have offered to help but if you would like to help sew them- please email me and ill send you the instructions and patterns. (I promise, its really easy) *You can buy these socks at numerous places. I usually get them at target because you can buy 3 for around $6. *If you will be sending these socks or money donations please have them to me no later than September 1st so I can have enough time to sew them. You can email me for my address. *Here is what they look like when they are done. I will be making numerous sizes so not just infants can wear them. *These are the already made-nothing else to do but stick those cute things on a pair of fat, plump, or skinny legs.*You can buy these at target, walmart, kid to kid, any baby boutique or online at http://www.babylegs.com/. They are more expensive (around $8-$10) a pair but there is no work to be done and they fit for quite a bit longer than the homemade leggings. Please don't feel obligated to help, this is only if you want to.This project means a lot to me.If I only donate 10 pairs- Ill be happy because 10 little legs or arms will be warm and 10 little angels will get to know my angel a bit better.If you have any questions please email me:email@example.com. *and for my inspiration*
July 18th 2009 at 2:10 am Makenzie Rye Webster was born. This tiny 6lb 19 1/2 inch. beautiful girl. As soon as they placed her on my stomach her eyes popped open. Her arms stretched out and she was here. She never cried. She was just happy to be alive. Everything was perfect. She did amazing the first 2 months of life. During that time we went swimming, took a road trip to bear lake, took a road trip to the cabin down south, lots of walks, lots of shopping trips, lots of restaurants, lots of parks, lots of sun, lots of smiles, lots of friends, lots of family, lots of pictures lots of loves, lots of visitors. She was our pride and joy. Life happily revolved around her. She completed our family and made it a dream come true. At 2 months Makenzie started to breathe a little funny. She was making a squeaking noise and acting like she was working a little harder to breathe. Her pediatrician kept assuring us it was normal and that she would grow out of it. By the first part of October she started having spells where she would lose her breath and be gasping for air. After the second time she did this we rushed her to the children's hospital. We ended up spending the night and checked out the next day with no answers. They couldn't find anything wrong. As the next couple weeks went by it was almost daily that we were calling her pediatrician saying she isn't getting better and is almost getting worse. During this time she also started eating less and less. She didn't seem hungry. I was nursing until the beginning of Oct. when she completely quit. At the time we didn't know why but found out later it was because she didn't have any strength to suck but a bottle was easier for her. The first week of November she seemed really bad so we took her to her pediatrician who said she didn't look right and referred us to an ENT (ear nose throat)doctor at Primary Children's Hospital. After we meet with the ENT he decided to try surgery for what he thought was laryngomalacia. They cut away a flap of skin in her throat and hoped it was the cause of her difficulty breathing and eating. After surgery we stayed at PCMC for 2 nights before we were able to go home. After we got home our little girl seemed to keep getting worse. She wasn't eating hardly anything and was only wanting her Mom. She would only lay in one position and would cry if you held her any other way. Her doctors assured us it was just because she is having trouble after surgery and that she should be fine soon. On November 17th my mom was babysitting her while I went to work. I got a call half way through the day from my sister, who was with them, telling me Makenzie kept turning shades of grayish blue. She was worried about her and said she thinks I should take her to the doctor. I left work and took Makenzie to the ER at IMC. I decided if I went to a hospital like that and she really needed to be admitted they would take us by ambulance and she would be seen sooner. AND. That's exactly what happened. They hooked her up to the pulse ox. and her oxygen levels were in the 70's when they should be no lower than 90. They put oxygen in her nose and rushed her in an ambulance to PCMC. Ryan (DAD) meet us there. They admitted her to the 3rd floor for testing. Her weight had dropped to 8 lbs. At her 2 month apt she was 9 lbs. She was extremely dehydrated and malnourished. For the next 2 days they ran hundreds of tests. We were hardly ever in her room because we were going from one xray, to one mri, to another test. They had to keep turning her oxygen up because she kept dropping. On November 19th a team of specialists came into Makenzies room. By this point she was having so much trouble breathing she was laying on her side and arching her back so much her little head was touching her back. She was trying to get air anyway she could. As I stood next to my little girl that day trying to catch words I could understand in that doctor lingo being thrown around I felt alone. I was scared. This whole time I kept thinking she would be fine, there is just some medicine she needs to get put on and everything will be okay. That day was the first day I was completely unsure. Within minutes the neurologist order for Makenzie to be transported to the PICU and intubated. Everything was thrown in her crib, I grabbed my bag and we were off. Down to the second floor. We were greeted by Ryan (who raced up there as fast as he could) and a team of doctors and nurses ready to help Makenzie. They asked Ryan and I to go out of the room while they intubated her. We sat out in the hall trying to digest everything that just happened. We were scared. In a matter of minutes we had to mature enough to understand our daughter was in the hospital, intubated and not sure whats wrong with her. We are young and this shouldn't have happened to our family. We haven't lived yet, we haven't showed our little girl the world yet. After we went back in the room we were amazed at the difference in Makenzie. We were with her every second of the day the past few months. It was hard for us to really see how much she was struggling to breath until we saw her breathing with ease. We both broke down. It was so beautiful yet so horrible. We held her little tummy that was so small her skin was just hanging there. We kissed her millions of times and rubbed her little arms and legs. The next few days were filled with tests... tests... more tests... and introduced to the wonderful new world of CPT and cough assist. Since she had this breathing tube in, she was unable to move around her secretions like the rest of us. When you cant move around secretions they build up and your lungs start to collapse. Every 3 hours were these treatments and every 3 hours Makenzie hated life. It was on November 21st that after many test we were told Makenzie has whats called Spinal Muscular Atrophy = SMA. They had to send in a blood test to confirm but all other test pointed to SMA. We were devastated. We were told right up front there are different forms of SMA and she may not have the more sever case and could live a fairly normal life. We understood no matter what type she had she most likely would never walk, run, dance, sit up... SMA is a degenerative disease which would mean at some point -whether it be at 1 year or 20 years she would lose everything and become paralyzed. Her brain however- would always be perfect. SMA doesn't effect the brain so she would have the brain of any other one her age. We did research. We talked to other families with SMA. We prepared ourselves for life with SMA. In order for us to do this financially we put our house up for sale, Ryans truck, We listed most all of our things online to sell, I even told my boss I wasn't going to come back to work and to find a replacement. At the time we felt we were given this new life and although its not like we imagined and dreamed we were going to take life by the horns and run with it. We realized our dreams have changed and as long as we have each other nothing else matters. November 30th 2009. Makenzie was scheduled to be extubated. They thought we could take the breathing tube out and make it the first step in getting our girl home. That morning was amazing. Kenzie and I kept counting down the hours and minutes until she was tubeless. Anticipating being able to hold her whenever I want and spin in circles with her, kiss her lips! As they extubated her she became distressed. Her levels started dropping. The doctors kept saying she just needed to calm down and take a breath. I was pretty much laying in the crib with her. I was holding her face and stroking her arms. I kept telling her to just breath and that she is okay. I tried to reassure her that she is doing a good job and that I'm here. She wouldn't stop looking at me. Her eyes will forever be in my mind. She was struggling, hurting and I wasn't helping. She was scared. I kept asking if they could do something for her. What felt like hours but only minutes passed when they said she isn't ready and that they needed to intubate her. They rushed me out of the room and began putting that damn tube back down her throat. Makenzie tried. She was trying so hard that day. She wanted to breath, she wanted to be held without tubes. She worked harder than anyone could have worked but her body just couldn't do it. I am so unbelievably proud of her. I am so honored to have a daughter who is so strong. After they let me come back in I just kept telling her how amazing she is. I kept kissing her and telling her that I was proud of her. December 1st- SMA blood results came back- NEGATIVE. Happy, sad, scared, relief, frustrated, concerned, unsure, angry- were just a few emotions that day. No SMA but we didn't know what that meant- better or worse. Her team of specialists took a step back that night- they went through all of their paperwork and her tests and said they would be back the next day with somewhere to go. December 2nd. Makenzie was schedule for a test. They did an xray of her chest. They watched her diaphragm. It worked perfect while the machine was on, but as soon as they turned it off, her diaphragm didn't move. Its paralyzed. December 2nd. 2 amazing doctors sat me down. They told me those words. Spinal Muscular Atrophy with Respiratory Distress = SMARD. Its similar to SMA but different which is why the test came back negative. It is a motor neuron disease, meaning there is progressive destruction of cells that control motor function, such as breathing and speaking. Cognitive function is unaffected. Like all motor neuron disease, there is no cure. It effects their breathing first (paralyzed diaphragm) and then moves to the rest of her body. Its a very new disease. Only being tested in the US within the last 6 months. Before that it was only tested in England. There is no research being done solely on SMARD. They know almost nothing about it. They know what gene it comes from, they know both parents are carriers. Every child is different and since its so new and so little people with SMARD they don't know exactly what she would or wouldn't be able to do in the future. What they do know is that she would need to be trached and on a ventilator 24/7 for the rest of her life. She would need 24 hr care which would mean a home nurse. At that moment she is at the best she would ever be. She wouldn't learn to walk, crawl, sit, run, sing, dance. She would slowly be deteriorating right before our eyes. They refer to this disease as the Lou Gehrig disease in infants. We were given a few horrible, unimaginable- no parent should have to decide options. - leave Makenzie in the hospital on life support until her body gives up on its own - trach and vent her. bring her home and slowly watch her go. she most likely would be completely paralyzed before age 1. - take her off life support and let her go. immediately i said i don't care what i have to do, give up and learn i will be bringing my daughter home and taking care of her. i didn't want to hear anything else. i only wanted her. i didn't care if she could walk or talk i would not love her any less. she would be here and that's all that mattered. ryan had a different plan in mind. for the first time through this whole ordeal we were not on the same page. he sat me down and said- we will do whatever is best for makenzie. she has to decide. if she isn't ready to go, than we will trach and vent her and take her home. we will dedicate our life to her and never look back. but. if she is ready to go, we have to. she has completed her journey in life. this is her life. over the next few days our world was completely turned inside out. most everything is a blur. we loved on makenzie every second. we told her stories and we talked to her. every morning i would come to her bed- give her kisses and ask what she wanted. after a few days- in the middle of a cpt/cough assist- my answer came. i looked into my daughters eyes and felt like she was talking to me. she told me she was done. she said she completed her journey, she did what she was suppose to do and she was ready to be free. i couldn't tell anyone for a few more days. i finally told ryan. he said he already knew. she told him right after we found out she had SMARD. we wouldn't tell family or friends or even the doctors. we weren't ready to face our reality. we wanted to give her everything we could while she was still here. we read her books, i told her all the stories i planned on telling her when she got older, we played, we smiled, we laughed, we sang, we loved each other unconditionally. we decided we would take her off life support on December 13th at 7:00 pm. A few days before we talked to her doctor and asked if Makenzie could be a donor. We told a few family members and one friend. We asked for no visitors the Saturday before and no visitors that Sunday morning. We asked Ryans parents and my Mom to come to the hospital on Sunday at 5. Be with her for a few hours and be with us while she went. December 12th we gave Makenzie her first Christmas. We had a tree, we played Christmas music, we gave her a present and we wrote her a letter. We held her all night. December 13th- minutes after our parents came in the room Makenzie started to make a funny noise. I asked Ryan to get the nurse who rushed in. She ran back out and started yelling at the doctors that her breathing tube was out. A team of 20ish doctors and nurses came running. The on call doctor looked at me and said- are you ready? Her tube was already out. I tried to take a breath and said okay. I held my little girl. I squeezed her tight. Ryan held us both. We kept telling her that we were there. We told her we love her. We promised we would be with her again. and then- our world, our life, our reason, our future... took her last breath. Makenzie Rye Webster born July 18th 2009 at 2:10 am went back to heaven on December 13th 2009 at 5:25 pm. She is our life- She is everything we are. Everyday is a struggle. We miss her beyond words. We ache for her daily. Our arms are heavy without her in them. We vowed to keep her alive. She did so much good in this world. She changed so many lives and she continues to do so with her story. There is so much more- so many more things that happened in the hospital but these are the main points. I never left her side. I lived at PCMC from November 17 - December 13. I never left. I ate, slept and showered there. I wouldn't leave her side. I was able to hold her very little. They had to restrict her movement so anytime I could hold her was very short and I couldn't move. It didn't matter though- those were the greatest moments of my life. To see her story in more detail visit our family blog: kendraandryanwebster.blogspot.com. You can see everything from the very beginning! She is our world. She is our future. She is our everything and we will live for her for the rest of our lives.