We had some fun recently going on a family vacation. We went to Bear Lake, Lava Hot Springs, Island Park/Yellowstone.
We had a great time and went over my Bday and Lucas's Bday. Bear Lake wasn't as fun as we imagined so we left earlier to more fun. Lava hot springs was really nice and hope to return in the future. Island park/Yellowstone is my home away from home so I loved it. Except our tire got a hole in it. It seems that lately when we go up that way we have something happen to whatever car we are driving. It's driving me nuts! We did have some fun in the park with fun surprises. Dawson loved the buffalo. He loved feeding the fish at Big Springs. I love walking on the trail there. Lucy did a great job and had a good time too. We did go to Soda Springs on the way back. My friend is from there. It has a man made soda geyser and a carbonated spring. It tastes like club soda and it's safe to drink.
We plan to go up to Yellowstone again this month since our time there was cut short from the tire issues. Plus, I like to go when the rut begins and the elk fight. More bears are out since hybernation happens soon. They come out lower elevations to get food.
We found out Lucy's vision has improved and she is near sighted along with a little bit of cortical visual impairment still. Lucy got a prescription for glasses! I just ordered them and am so excited for her to wear them.
Yesterday we went to the Syracuse Fun Center. I think called "The Rush" or something like that. We had some fun and it wasn't crowded. Lucy actually went laser tagging with us against some other kids and parents. We staked out the best position. Our team won and I won the overall points. I felt pretty awesome. Lucas's laser gun went out so he felt a little jipped. I never thought I'd say that Lucy went laser tagging lol. We had a great time and enjoyed our stay. Today I took the kids all by myself to pick up Lucy's meds. I forgot to get them the day before and Lucas has to work late tonight. I packed them all up and we got the meds and even some groceries! A lady that walked by said Lucy looked like a doll. I've heard that a lot, she does though. And then another lady asked me if I needed help when we got to the car to leave. I appreciate the nice people at the store today.
Dawson has been learning from the Waterford program from the state of utah. It's a free preschool program that is supposed to be really good. We went to the orientation a week ago and we started right away. We really don't have to until September 1st. It's 15 minutes a day as a requirement 5 days a week. He does more on there because it's fun for him. I've already noticed the difference and am already very proud with how he is learning in just a weeks time. Freebies2deals talked about it and so I signed up and so glad I heard about it.
I've been off Facebook for almost 24 hours! Woohoo! Haha :).
Not sure how many people will read this, but I'll be on here for now.
Like my title? I just like to copy the dramatic headliners I've laughed at so much lately. Something completely opposite of what you will read on the blog post. Except, I'm really leaving FB. I'm not saying I will be gone for a long time, I'm not saying I will be back either. I just have to go ok?Facebook is too much for me to deal with. I've thought about this for a long while and I know without a doubt I need to be off right now. I live in a world that isn't like most. I find it hard knowing where I fit in right now. I love staying connected with people I really do. It's just if most of you saw what I read and the people I know you would be very overwhelmed.
I was given a healthy child in 2009. In 2011 I was given a very fragile child. It turned my whole world upside down. I don't live a normal life. I also don't want it to be the only life I lead. I'm in a limbo land wondering where I fit in. Reading posts on Facebook has become too overwhelming for me. So much sadness and negativity is around. I advise if you know anyone dealing with disabilities in the home give them a hug, call them, do something to let them know you care. I cannot say what I read, but lots of people in that community are suffering so badly right now. Some parents that have left this life because it was too hard for them. I hate seeing so many that suffer. It hurts my heart so much. I see so many posts that it's become very difficult. It's also difficult to read comments with how ignorant people can be. I love reading comments from a lot of you. I do believe that FB is a surface type way to say I did my part by 'liking' something. I am not perfect and I just believe in general a lot of us should be more involved like we used to be before social media. All in all I just am done with it.
I'm not upset with anyone, just feeling like I need to focus on other things in my life. Facebook feels a lot like highschool. And I didn't do well in highschool. If you want to be more involved in my life message me and I can give you my info.
Love to all! I will be deactivating my account in a few days.
It's been a while since I've posted any updates. That is actually a good thing! Lots of fun activities are happening right now and it's been great. I feel like a "normal" person. I've lost 35lbs and 5 away from my goal. I really have wanted to weigh what I did before I got married. Losing weight sucks and it's not fun. I'm a stress eater, and I love to bake when I feel stressed. I love baking anyway, but it's heightened under stress. Last year was a hard one and I wish to not repeat it. I've distanced myself from some special needs groups. As much as I love them they suck the life out of me. I feel much happier by just sitting back and enjoying life more. Lucy has been doing very well on daily steroids and bi pap at night. I thank Heavenly Father for giving me a breather. I had a talk with him and said I will be crazy soon so please help! I think he must have believed me because he's given me some time to be happy. I've been practicing every night for Anne Of Green Gables this week. Show time is almost here and I'm excited! I've been trying to focus hard on what I need to do for it. I'm a perfectionist so I anticipate going to practice and fixing whatever I didn't get right the night before. It's been so great and I really enjoy being there. The other night listening to the music before we sing our first song made me tear up. Being a part of this has really meant a lot to me. It's something I enjoy and the wonderful people that are in the show are so great.
I just wanted to update a little bit and hope all is well with everyone reading this.
Melinda
How has 2014 been treating you? Have you stuck to any New year resolutions you've made? Or did you not make any? Haha.
Well, I made some. And I'm doing pretty darn well at keeping them. I'm honestly in a great place right now. I've taken some time for me! And you know what, I haven't felt this great in a long time! Everyone needs to do this for themselves. You aren't any help to yourself or anyone if you neglect yourself. My check list for the year has been going well.
1. Lose weight. I am 16lbs away from my goal. I have lost 24lbs so far.
2. Go out with friends more. I have been going out more, and I definitely feel recharged by having more social interaction.
3. Get my eyes checked. I finally got an eye exam and I'm near sighted with astigmatism. I have ordered glasses and will hopefully get them soon.
4. Get my in home salon finished. I keep adding bit by bit. It will go under construction then be completed this summer. I also am hoping to be a temp at my old job. I would love to teach again when I'm needed.
I have more to add and need to do this year! Hopefully I can make most or not all my goals!
Lucy is doing well right now. She's on Bipap at night and has breathing treatments twice a day for preventative measure. I feel like we are going in a great direction right now and can't wait for April. I will be taking her to social gatherings again soon! I love Spring!
Remember to take time for yourself! You deserve it! :)
I have been detoxing.. Sometimes you just have to allow yourself to heal a bit after you experience a hard situation(s). At the time not being traumatized, but afterwards feeling frightened and miserable. I bucked it up when I had to deal with Lucy being in the PICU Sep/Oct. Those emotions come out eventually and they did. December was awful, so many things that surfaced. Emotions that were dug from long ago came out. Is it weird sometimes to want to feel a bit like that? To remember that this wasn't my situation. That I once had a life that was easier. I don't like feeling that way, but I like to be reminded that it wasn't always so hard. I don't like the trigger of being reminded that though. Because it can be brought out by comments that can dig deep into my soul like a dagger.
Guess what? I'm actually a pretty fun person. I'm still the same person. Just taking care of a daughter that is a bit on the fragile side. I still like to go out and be a complete dork. It's who I am. And honestly I'm a bit over all of the heart break. I feel so bad for so many people suffering, but I'm over it. I mean this in a way as I can't let it drag me down. Because I could be dragged down everyday worrying about everyone. It's not healthy to live that way, you have to care. Just don't get obsessed with the hardships that surround you. I don't like the articles that always say how to act around a family with specials needs. If you don't know how to act, that's your problem not mine. I appreciate the articles, but to constantly be on the attack is what it comes across as. And I don't ever want to attack anyone. My list is small, act like you care and don't be around us when you are sick. That's it! I'm so easy to please. And if you want to be a dork with me make plans with me! I like to have fun like everyone else. And girls nights are a must, come on ladies you need them.
I'm feeling better this New Year, I'm taking better care of myself and that feels great. Sure I have worries.. But, I know that I have been blessed. My husband has worked so hard and landed some jobs to get us upgrades in the house that we needed. I believe in the darkest of times blessings are there. Like when we went to Disneyland and Lucy loved it. I met a Backstreet Boy and have pictures. In October when Lucy was in the PICU Imagine Dragons performed and donated money. They are an awesome band that gained some new fans. They just performed on SNL and rocked it by the way. We got to have an awesome trick or treat at the hospital and cleaned house! More treats and toys than Lucy and Dawson would ever get trick or treating in the neighborhood. Dawson came with me and I carried a basket for Lucy. That was so neat to be a part of! I gained some new friends and saw another friend that frequents a lot. Ronald McDonald house is so great! Rainbow kids provided me with a nice lunch. And have in the past as well! Even though it can be scary it's nice to see familiar faces. I know Lucy has been protected at least twice from illness since being home. I'm so beyond grateful for that! I'm blessed to have a perfect spirit in my home and a freakin adorable little boy. He is going to be a heartbreaker when he grows up. He seriously is so cute and is a good kid most of the time.
I love my family!
P.S. And the Pharma screen started! Thanks for all who helped!
Hi, my name is Melinda. I am a mother to a special needs daughter suffering with an extremely rare chromosome duplication/triplication. Most of my daughter's problems are caused by the Mecp2 duplication. She has even more copies than needed and it has thrown her whole body out of wack. My daughter suffers from Epilepsy, Cortical Visual Impairment, Hydrocyphelus, Hypotonia, Severely delayed in development. She cannot walk, she cannot talk, she cannot sit up, crawl, or even roll over. She is fed through a g tube, and cannot eat orally. She requires C pap at night. She has had major respiratory problems the last few months. Requiring to be on Bi pap, and be admitted in the PICU. When she was 2 months old vaccinations triggered Epilepsy to begin. I guess it is common to have happen when you have an underlying condition. The seizures turned into infantile spasms, they can cause major setbacks. http://www.epilepsy.com/epilepsy/epilepsy_infantilespasms If you read the article on infantile spasms it's not such a good prognosis is it? Because of the infantile spasms Lucy has Cortical Visual Impairment. http://en.wikipedia.org/wiki/Cortical_visual_impairment. She is legally blind.
At 5 months old my daughter developed hydrocyphelus. http://en.wikipedia.org/wiki/Hydrocephalus. Thank heavens we discovered it early on before damage was done. Because of Lucy's condition she also has severe hypotonia.http://en.wikipedia.org/wiki/Hypotonia. This has caused a major problem in her mobility. Why am I listing all of this off? Because I want to paint a real picture to people. My daughter has had all the odds against her. My OB didn't even think she would make it to birth. She was only 3lbs 9.5 oz at full term. I was told at 25 weeks that she was growing behind, and it could be the end of the pregnancy. I have gone through absolute hell. I've seen babies in the NICU and PICU struggling to live and some not make it. I know God sent my daughter here for a reason, and she is the sweetest little girl. She doesn't complain when she goes through so much! She teaches me and my family what it's like to have an angel in our presence. She is my angel who has fought her heart out, I will do everything I can to give her a better life. Because there is HOPE! Scientists are super close to getting a medicine to help regulate the mecp2. This could be a huge break through. This would help Mecp2 duplication/Rett syndrome. Rett syndrome goes along with Mecp2 duplication. In fact a mouse model was done already with Rett syndrome and it was successful. http://www.rsrt.org/research/understanding-the-2007-reversal/ Check out the video on the link.
Above is a video that has some of the children experiencing the pain the mecp2 duplication brings. We are in the process of making a new video that will have even more children, along with Lucy in it.
We are looking to get funding for a pharma screen to reverse this! We are less than 40,000 away to start the first 2 years. The Big Give in the UK will match donations on December 5th. I am taking all the donations from my page and donating it to it. I want as much as we can to get doubled. Please help Lucy and all the other children suffering. Wouldn't you do something too if this was your child? I'm begging and I'm pleading for help. If you want to learn more about the 401 project reversal here is the link. http://www.401project.com/
Please donate, please share.
At the top of the home page I have a donate button, you can donate from there. It goes into the paypal account for her. You can also go to paypal and donate to messproductions@gmail.com. Please use these options, I want to make sure I can get this money doubled and will place it in the right fund for the project. 100 percent of the money goes to helping our children. December 31st we have a deadline to raise the funding for the first 2 years. Please please help!
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