Good times

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

New Year, New Me

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! :)

Detox

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! 

Hope

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!

A slippery slope

This is going to be a tough post to write, hardest one yet.  Lucy has been having it rough the past two months.  So much so where her right lung was considered collapsed.  Sometimes you make choices that will help or either hurt.  So much pressure to make the right choice, but you don't know what that is.  If Lucy gets sick again like she did before she will be getting a tracheotomy.  Her quality of life would be lengthened if she gets this done.  Right now we don't have to get it done, but it's out there and we will be faced to make the choice in the future.  You see the thing is, I have a very fragile daughter.  So much so my OB didn't think she would even be born alive.  When asked by people is your daughter going to be normal and Walk one day?  Crawl one day?  Talk? etc.... 
The one thing I think of when asked this is that I just pray my daughter lives to another Birthday.  I don't say it, but I think it.  They even talked about Hospice with us, seriously dreadful they said it.  The thing is, they don't know Lucy.  She may not be mobile, but she is a tough little cookie.  I was bothered they even talked about that, but I guess it's protocol for them to talk about.

Lucy came home last night, and the cpap machine confused me.  I took her off it, and hopefully we can get that machine figured out tonight.  The settings with oxygen are way different with a c pap.  You need to crank the oxygen up to have it work right with cpap.  I didn't know it would be a large amount of oxygen to compensate.  We need a higher oxygen concentrator to make this work.  I called my doctor and hopefully we can get this figured out today. 

I feel like I live in a different world, I mentioned this to my friend Rebecca who's son has Trisomy 18.  She said well we do live in a different world, she is right.  It's hard to be in a normal setting and think I'm out of place.  I look at family and friends and think you have no idea what I go through.  It's completely frightening and terrifying.  I've seen things, heard things, done things I would have never imagined going through.  It helps when I do go to the hospital and see friends, meet new friends.  These friends all have children that struggle.  We know how it feels to go through life alone at times, and how hard it is.  We aren't always strong, we cry in private.  Sometimes even in public when one little thing sets us off.  We notice who cares, we notice who tries to help, and we notice who doesn't.  Sometimes the people that don't are those that are supposed to be closest to us.  Yes, it hurts.  It hurts so much at times.  I honestly try to accommodate and help so when those loved ones don't, well it breaks my heart.  If it wasn't for so many nice people in my life it may really tear me down.  I wear my heart on my sleeve,  and I have a strong will.  I care so much and I'm tough too.  You need to have laughter in life, or life would be awful to live.  I'm optimistic as much as I can be.  I'm more of a realist though and look at all angles.  I think it helps me cope more in difficult times.  I carry a lot of responsibility in helping my kids.  My husband works all the time so we can have enough money.  I know that Heavenly Father has provided opportunities for us to work to be able to make it through.  I am very appreciative that we have been given those opportunities so we can be provide for our children.  And if I didn't have my parents helping, I would have no idea what I would do.  So, I am forever grateful for them.  My dad always helps at a moments notice for anyone, I know it's harder for my mom because she is reserved.  I can tell you though with her as my mom she doesn't mess around and has helped me above and beyond.  I have such great parents, Lucas and I are so grateful for that.

I hope that Lucy can catch a break for a while and have her lungs work right.  We need a break, I'm tired and need some relief from the chaos for a little while.  I thank the people who care and have made a difference in my life.  Pray that Lucy will be good for a while, she really needs to get healthier.

P.S  Get your church group together and make a meal at the Ronald Mcdonald house at the hospital.  Great opportunity to serve, I highly recommend it!  And trick or treating at the hospital was a blast, thank you Rachel for donating some Hershey's candy.  The kids were taken care of at the trick or treat and we had so much we didn't have room in our baskets.  It was so neat!  And some people put together little notes saying they hoped the kids got better.  So, I know some people brought packages to give to the kids.  It was so neat, seriously more than going through the neighborhood trick or treating, It was simply awesome!
 

Parainfluenza 4

August and September so far has ended up kicking our butts!  We were sick, and then the sickness kept recycling on and on.  Lucy looked like she was feeling better..  But, then Friday the 6th I think that was the date anyway.  A cough came back that had been gone for a week or so.  It came back again and it sounded worse.  I was trying to see if  I could wait until that up coming Monday to take her in.  Well, by Sunday I knew I had to take her to Primary Children's Hospital.

One guy whoever he was Attending, Resident who knows...  He was like oh just monitor at home.  Well, the real Doc came in and said she had Parainfluenza type 4.  We don't know a lot about that kind, it's a newer test.  It's kind of like having the croup they said.  Well, he knew she had to be admitted and in she went.  On Monday they tried giving her Nebulizer treatments.  She was having a hard time breathing, they were worried about her carbon dioxide levels being high.  Sure enough they were and they put her on a high flow of oxygen.  When you are on a high flow of oxygen they send you to the PICU to monitor you.  Well, I was very intimidated by this.  Lucy has never gone to the PICU before.  She had been in the NICU when she was first born, but this was going to be a little different.  I was doing pretty well,  I met another Mom that has a child with Trisomy 18.  She is so strong, and it honestly helped calm me down.  Sad things happened in the one night I was there with Lucy.  Life is so precious, and these kids try to fight as long as they can.  They are tough, but they don't have the same immune system as a regular healthy child does.  Well, the next day Lucy was off High flow and came back to the infant unit.  She was on the 4th floor this time, I hate being on that floor.  We were in a double room, which makes me mad.  We should have our own room, we are paying and come all the time.  I won't go off on that further, I just get mad about it.  So, Lucy just needed to be suctioned all the time and once she was her stats would go up.  Any time they dipped, we would have her be suctioned.  Well, we had to just suction her mouth in the end.  Her poor little nose had gotten inflamed and bloody.  So, we would just suction her mouth as long as we could without suctioning her nose.

I had some major frustration with the team working with Lucy.  The medical student would come barging in at 6:00 am and tell me to wake up.  Um no you don't do that.  I got after her once and said to turn the light off.  The hospital beds are not really beds, they are a piece of hard board you lay on really.  I had about ten pillows that add up to really like 4.  Because they don't have much cushion.  My back and hips were in pain every time I woke up.  They seriously need to get something better, it's ridiculous.
So, the team was looking at me like I'm crazy.  We were supposed to go to Disneyland yesterday.  I made sure everyone knew that we had that planned.  The reason why I say this is because sometimes the team likes you to stay longer than needed.  I want them to know hey, if we don't need to be here longer please don't make us be.  We have a trip we are trying to go on and I can have her heal more quickly at home now that she is on a smaller amount of oxygen.  She is on .25 a quarter of a liter.  The thing is they don't know Lucy.  They think look how fragile she is, this mom can't do it.  Do they not know I've been doing this for almost 2 years now.  Give me a little credit ladies.  She is actually pretty darn tough as nails for how immobile she is.  So, yeah we are still planning on going to Disneyland just going this week.  I am going to see what her Pedi thinks tomorrow.  She is actually making leaps and bounds since being home.  She is acting herself, just hooked up to some oxygen in the day.  I always have her on oxygen at night anyway.  They don't want me to wean her off oxygen for a while, so I won't try until she sees the Pulmonologist.  They were the one's to say that, so I will not do any weaning until they see her.  Plus when we go on our trip, we will break up the driving where it would be the 3rd day from when we left that would have us in the Park.  So, that gives even more time.  We are taking it slow and going when the park is slow.  Lucy left less than a week after her surgery with her g tube to Oregon.  It was the best trip we probably have ever been on.
They pushed for vaccinations during our stay, I was getting so bothered.  Honestly I would take the risk than having brain damage occur like it did before.  Because the type of seizures that were triggered did that.  Those doctor's don't know and they don't get it.  If they did they wouldn't be pushing it.  My pedi knows what happened and he has never once told us to have her get vaccines again.  I trust him and he trusts me.  That being said, anyone who is healthy should be up to date on their shots.  This will help protect those that cannot be vaccinated.  Also, Lucy had a study done for reflux.  She sure does, and so the team decided last minute before we left to place a gj tube.  I was hesitant since she threw up bile a ton when they tried to give her an nj tube last year.  So, I told them..  But, they talked me into doing it.  So an hour later we left and that night she was puking up bile.  Yep, and when I call the hospital they weren't helpful since I was discharged.  I was very unhappy that they would do that and send us on our way.  On a weekend mind you!  So, luckily the port she has, has a g tube port.  So, I switched it back and she hasn't thrown up in 33 hours. I will get a new g tube button on Monday to switch out the j tube completely.  Having her throw up bile over and over again compared to barfing once a day seems like a no brainer.  Plus, I think she may go a while before barfing again.  We have her on a slow continuous feed and she is on Prilosec.  We have been on that for almost 2 weeks.  I can tell the difference, and now I can really tell since she isn't getting bolus feeds.  Maybe I will just always keep her on continuous if this doesn't make her barf as much.  I want to do what's best for her.
I haven't had to suction Lucy very much since she's been home.  She is getting breathing treatments that are comparable to nebulizer treatments just less equipment to carry.  I pushed for that as well in the hospital, I kept telling them over and over again.  Finally the Pulmonologist mentioned it, so of course they listened then! Well, it's really helped her, I just give it to her when I hear a little bit of a rattle.  She hasn't needed it that much since being home.
Well, that is my update.  I thank everyone for the prayers, treats, and lawn being mowed.  And remember if you are sick don't come near my family.  I promise I will love you more for letting me know.  In fact I would probably even make you a treat for being considerate lol.  I love baking, and I bake good treats just saying.
Lucy is doing better, I'm a bit sassy as you can tell from reading.

   I'm amazed at seeing other Mom's strengths.  And I got to see that this hospital stay, I needed to see that.  It's nice to know that I'm not alone in this.  It's a support system I need, they understand and help me.  And if you would like to help other Mom's and families like me.  Bring your ward or church group or family..  to make a meal at the new Ronald McDonald house in the hospital.  It was nice to have a couple meals that tasted great from people that donated their time and money to help our stay be a little bit more bearable.

  I would also like to say that last night for the first time Lucy really held on to my finger.  I mean a really good grip.  She has never had that great of a grip and cannot hold things.  Well, she held my finger for a long time last night.  Made my heart glad, it's the little things that mean the world to someone.  And that my friends meant the world to me.  I got a picture of it to share.

Hospitals and Gtubes

     A lot has happened this past month.  Lucy was hospitalized this last week due to her feeding issues.  The appointments she had scheduled for a g tube were just too far away.  So, we were able to get Lucy hospitalized to bypass that process.  She needed the surgery very badly, and I decided enough was enough. I'm her advocate, and I needed to help her as soon as possible.  She hasn't gained any weight for months.  16lbs is where she has stayed at since Fall.  Feeding her was very hard for me.  Took me hours each day and she would be coughing and sometimes barfing during the process.  I can't risk her getting a big case of pneumonia because of that.  So, we had all sorts of testing done while we were there.  During her swallow study, the therapist was great.  She didn't just scratch her head and say well I don't know what to say, some have done that.  She came right out and said she was too high risk and shouldn't eat food orally unless her development changes.  I loved that she just told me, because I knew she was right.  Lucy triggers the swallow reflex when it about gets to her esophagus.  She catches it barely in time.  I think that since that was the case, she probably has gotten a little bit into her lungs at times.  The therapist said she has dysphagia since she doesn't have a good swallow reflex. We were able to get Lucy the g tube surgery since everyone that looked at her knew she needed it.  She had surgery on Monday, we were at the hospital for 8 days...
     So, during this stay we had it was a little crazy.  When we first got there we had a double room.  I was hoping that we wouldn't have to share with anyone.  Well, we did and it was an abusive situation.  The 8 month old baby was abused and I heard all about it.  I didn't leave Lucy because the father was present in the room.  The father was the one that broke his legs and bruised up the baby.  I heard way too much information and I told a Nurse or anyone that was with me when I got a chance to leave the room for tests with Lucy.  Well, we got moved rooms in the end.  I heard the mother bawling after the last social worker visit she had.  I don't think the child was able to come home with the parents.  I hope the poor baby stays away from that low life father.  We were moved to a nice private room, I'm pretty sure we had stayed in that room before actually.  Poor Lucy had to be poked so many times during this stay.  To make sure her electrolytes were ok.  I guess once you feed more nutrition levels can go weird.  So, you just have to keep an eye on it.  An awesome addition to the hospital is the new Ronald McDonald room.  It just barely opened and it's for parents to eat free and relax.  In fact if anyone would like to come for an activity such as young women's or relief society, come over and make a dinner for families.  They don't have anyone on the calendar since it's so brand new.  You can bring in the ingredients and prepare a meal that feeds 50 people.  It's such a nice facility, and a great atmosphere.  You can also donate food to the main Ronald McDonalad house in Salt Lake that goes to familes as well.  I think this is an awesome thing to contribute to.  It helps us save a little bit of money where we can when we have our children hospitalized.
     I was able to attend the sacrament meeting last sunday that Primary's has.  It only lasts 30 minutes, so that is awesome haha.  It's hard not to cry when you are there. Knowing the people that surround you are hurting and struggling.  A women sang "I am a child of God", and it was very beautiful.  So many of us began crying as the song was sung.  Afterwards there were complimentary blankets to take home that the ward had made.  A little patch work was on the corner, I will post a picture.  Reading what it said made me emotional.
    Seeing children in the halls with monitors and IV polls is very humbling.  I saw children and teenagers come in and play in the new forever young zone to get away from the reason why they are there.  They had a tree where you can make a wish and stick it on there.  I made one for Lucy,  I wished for her to be healthy and strong.  I really enjoyed reading the wish that a little girl could be in an Irish Dance competition.  Seeing the sweet girl in her wheel chair in the cafeteria wearing a princess crown.  I told her she was a very pretty princess.  She lit up, and I knew it made her day.  These sweet children that suffer so much, are all so beautiful.  And they should all know how great they are everyday.
    Truth be told I suffer, I really suffer some days.  The last couple of months have been rough on me.  Some days you go by doing well, and then others it feels like someone threw bricks at your face.  I don't want to go in every detail of what makes it hard right now.  I just have bad days is all.  I think I've come to the end of my rope with questions.  I know people care, I know people mean well.  But, if you got the question everyday asking if your child will ever be normal all the time... Wouldn't that hurt you?  Guess what, my child will not grow up like other healthy children.  She won't and that is how it is. If you wonder why, I have wondered the same thing.  I don't have the answers, we have no other children to base her off of.  And with all children that have genetic issues, they don't all manifest the same outcomes.  They are unique and write their on story.  You know I have one answer for you, and this I am sure of.  She has a perfect spirit, can't that be enough of an answer for you?  She does as well as she can do with her physical limitations.  If you had seizures and low muscle tone wouldn't you be in the same state she is in.  If you see this, then why ask?  I don't care about some questions.  I really am fine with it.  It's the questions that aren't tactful that really hurt.  Will my child ever do anything you consider normal?  I have no idea.  If you want to ask God, go for it.  I've been asking him that same question.  I have a beautiful child that is as sweet as they come.  I love her, and whatever happens happens.  All that matters is that she is loved, I will punch kick or fight someone to protect this sweetie.  I had to do that with a doctor recently, yes you saw the post.  He came in at the hospital and apologized.  He had no idea what he had said, I told him.  It was super awkward, but he apologized.
    I'm going to try and upload some pictures, hope they work!  Thanks for reading and understanding, thanks for the love and support you have given!