Charlotte
Last weekend we hosted an art competition in Kate Jackson park, all the paintings will be hung in Luke's room, but he has already decided the winner. To choose the winner we put the paintings in front of Luke and asked him which he liked best. The rankings are as follows: This amazing artwork was done by my friend Morgan, and won first place! This colorful masterpiece was done by Yannick's friend Barrett, and won second place! Finally, this awesome painting won third place and was done by Hamilton! Congratulations Morgan, Barrett, and Hamilton. The prize for first place is a Target gift card!
Charlotte
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Luke is slowly getting worse. The doctors say that he is in the best condition he will ever be, but the equipment that is needed to keep Luke healthy is starting to take up more room, so last week we moved Luke into a new, bigger, room. He is more comfortable in his new room but the walls are a dull brown and Luke loves bright colors, so we are organizing a contest to paint for Luke and brighten his room.We will cover the walls with the paintings and Luke will pick his favorite. The winner will receive a Target gift card.
Where and When? Come to Kate Jackson Park in Hyde Park between 2pm and 4pm on Sunday May 26. We will be stationed at the picnic tables in the playground. Kate Jackson Park 821 S Rome Avenue Tampa, FL 33606 If you can’t make this time and would still like to paint for Luke, you can reach us on the ’contact us’ form what will be provided? We will provide the following supplies:
We will also have bottles of drinking water. What to bring? You do not need to bring anything else to paint. We recommend you wear old clothes, even though the Crayola paint is washable. If you would like to use other art supplies, such as glitter, stickers, or a larger canvas, please bring your own. We will provide drinking water but please bring your own drink as well in case we run out. If you have any more questions please let us know. Here is a link to document that can be printed as a brochure: Paint for Luke. It has additional information and a form that you can fill out if you want to participate: See you on Sunday! Charlotte Come and join us in person or in prayers for Luke's Baptism on Sunday, May 26 at 10:30 am at Saint Andrew's Episcopal Church in downtown Tampa. Saint Andrew's Episcopal Church 509 East Twiggs Street Tampa, Florida 33602 www.SaintAndrewsTampa.org We want to thank all of you for your support and generosity. We have been overwhelmed by your interest and resourcefulness to support Luke. Tasks on the planner are filling up very fast and we are getting a constant stream of 'how can we help?' requests. We also want to thank those who provided some financial support. In the past week, you donated $900 for Luke's care and this covered 90% of the cost of the flights and hotel stay for the trip to Pittsburgh. We feel so blessed to have such support from friends and family and beyond. Some people have shared our website with their work colleagues, church groups, sports teams, etc. and we are seeing interest to support Luke and even, MLD overall, from many people who did not know us a week ago. This support is critical in keeping us going and in helping us achieve the goal of giving Luke the best life we can.
Charlotte Luke was in Pittsburgh earlier this week to meet with Dr Escolar and her team. It was extremely useful but emotionally draining, for my parents, looking into the future months and getting glimpse of many more challenges to come. Dr Escolar's team did a good job outlining the kind of issues we will be facing, the equipment we need now and we will need in the near future and how to adapt Luke 's care to a fast progressing illness. They reviewed his medecine dosage and feeding complement through the tube and made adjustments.They also got some information on 'augmentative communication devices' using an Ipad. This will help Luke communicate using technology as he cannot use words anymore and will soon be even more limited with movement of his arms and hands.They also went into more scary stuff like how to react to seizures, watching for signs of aspiration and avoiding food that may make him choke. We also need to get Luke back into his night braces and introduce day braces as the stiffness in his feet and legs will soon have an impact on his overall posture causing scoliosis and related breathing issues. A lot to take in and a lot more that is way above our heads, but focusing on planning ahead gives us a sense of regaining some control, even though we cannot change the ultimate outcome.
Charlotte A significant number of Luke's family members and friends are French and do not understand English very well. We need to translate our website into French and keep up with translations of the blog a couple of times a week. Please check out the support planner for translation tasks and let us know if you can help. If we have many people signing up, it should be a small amount of work each time…Many thanks!
Luke is moving into a new room, but the walls are a dull brown, so I came up with an idea that would make his room more colorful. I would like to organize a way for interested kids to paint something that we can put on the wall, if anybody has any ideas contact me using the “contact us” form.
Thanks, Charlotte 5/4/2013 On Thursday, Luke was back at the doctor with a high fever. The pediatrician was not sure if he might have an infection at the site of the tube or if he might have caught a virus in hospital. He was given antibiotics and we are using Tylenol to control the fever. Poor Luke! Last night was our first time with a nurse so my parents finally managed to get enough sleep. The nurse monitored Luke’s fever, supervised his feeding, gave him his medication, and kept moving him to keep him comfortable. Luke woke up in the best mood I have seen in a long time, and the bags under his eyes were smaller. Looks like today is going to be good; Luke is sitting on the coach watching curious George (I think it’s in German, but he doesn’t care). Charlotte Last night was the first sign that my parents will finally start getting some sleep again. Thanks to new medication, Luke is “sleeping like a baby,” for the first time in weeks. We are just starting to get used to the feeding tube and how to use it. The possibility of a nurse coming to help us seems to be increasing and we are starting to think about new sleeping arrangements.
Things are finally looking up and I want to thank all of the people who have accepted jobs in the support planner, my family is truly grateful and I don’t know what we would do without you. I have been trying to post as many pictures of Luke as I can, you can check these out in the “pictures” part of the website, also my dad recently uploaded a few you tube videos that I think you would enjoy. My grandma will be arriving on Saturday; she should be staying with us for a few weeks to help out, I am looking forward to spending time with her. I should have more updates for you in a few days, hopefully by then I will have more news about Luke and how we are doing. Charlotte |
Luke ParkesLuke is six. He lives in Tampa, Florida. His mother is French and his father English. He has an older sister who is 17 and an older brother who is 14. CategoriesArchives
December 2016
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