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!

Opposite day

Hello friends, I realize what I'm about to write will not make absolute sense.  But, it's the best way to try and tell you what I learned today.  Some of you may remember that Lucy had testing done with me in the fall.  I was told the results for her were promising and that she showed inactivation of some the duplication and triplication she has.  Well, today I found out that was not correct.  Instead she actually has 100 percent of those cells activated on the duplication and triplication. She didn't inactivate it at all, at least in the white blood cells where they tested. The assistant had told me wrong, she didn't know of course.  It's a very extensive test that is hard to be able to tell what is going on.  Most people who have a duplication have some of the duplication inactivated if they are a girl.  Lucy didn't have any!  They said that was very rare to have happen.  I asked the Geneticist about one the chromosomes she tripled.  I wanted to know about the MECP2 gene.  He said yes, that is in there.  Also known as Rhett Syndrome in girls...  Boys who have this have a very bleak life expectancy.  And rarely do girls get this since they can shut off the MECP2 gene.  This gene mostly shows up in boys.  They want to do more tests on her in the future.  In some cases some of the bad cells can die off when the child gets older.  It's less likely to happen but our Geneticist said it is a possibility. Nobody has the chromosome disorder she has that we know of, but she does the MECP2 gene in there which some children have. I've looked it up before, but it's not a fun read.

Right now I'm just like really??  Not what I was expecting at the yearly check up at the Geneticist.  I feel pretty numb, and just not knowing what to think.  I'm not having a nervous break down, I'm just at a loss of what to think.  Lucy truly is a mystery, and nobody knows what her future holds.  We will just hold on for the ride.  Just not the news I was expecting today...

More testing will be done in the future, very complicated testing that is fascinating to learn about.  For now, it won't be covered for us to get done.  So, we will wait and ask again in the future.

If I could offer a word of advice to those that don't understand what I'm going through this would be it.  Always be grateful for your healthy children,  don't ever take them for granted.  Even when you get upset at them for being stinkers, always be grateful.  It's a hard world out there folks, don't EVER take them for granted.  You have no idea how scary it is. Hug your children and tell them you love them everyday.

Unique friends I love you, and I consider you sisters... I have your back and you have mine.  We will fight on together as we go through our journey.

I'm going to leave this with you, I love this song more than I could ever say.  I sing it all the time/cry  But, I know the lyrics are true. I always think of Lucy whenever I hear it.  Here are a few lyrics from the song.



I'm through accepting limitsCause someone says they're soSomethings I cannot change but 'tillI Try I'll never know..I know it sounds truly crazyAnd true the visions hazy
But I swear SOMEDAY I'll be,, FLYING SO HIGH..
I'm DEFYING GRAVITYAnd you won't bring me down

Defying Gravity (Wicked)

Sometimes it hurts

Lately I have been feeling really anxious, like to the point where I realize I am thinking crazy thoughts.  Usually what sets off crazy anxiety from anyone is an emotional trigger.  One thing that makes the Jenga game fall to the ground.  That one little thing that makes your balance go out from under you.   Right now I am having a fear of Facebook, yes a fear.  I am highly considering taking a break even though I rely my business heavily from Facebook.  The reason for this is the newsfeed that pops up.  You know that when you like something it shows in your friends newsfeed.  Well,  so many pages are out right now of sick children that are suffering.  I see these pages on my facebook, it didn't bother me at first. I have a few pages where I like to follow progress. But, now I have so many of those pages popping up on my newsfeed I read all the stories.  Well,  for me it's too hard to see this.  I don't want to see it on my newsfeed.  Hits too close to home with our family's situation.  I know I could easily create a page for the whole world to see, but I cannot do that.   I think whatever a person wants to do to help is up to them.  For me it's like pouring salt onto my wounds.  It truly upsets me, and honestly brings me back to a place I wish to not go to.

Lucas and I were watching this story about a girl that has some genetic problem that makes her not age or grow.  It was on the Katie Couric show recently.  Well, I was listening to how they think everything is fine with their daughter.  They said if someone came to them with a pill to cure her they would say no, nothing is wrong with her.  Now, the problem isn't her height.  Being short is great, and that doesn't matter.  The genetic problem causes her to be hospitalized on a constant basis and she also experienced a stroke when she was 5.  She does have a list of medical problems. Well, I watched what they said about her being fine and nothing is wrong with her. I didn't say anything about that until Lucas spoke up after it was finished.  He didn't agree with the statement, and then I told him I didn't agree as well.   I hope he is ok with having me talk about this.  But, he said "If Jesus came to our door I would plead with him to heal Lucy."  I understand why that family said that, but they need to know it's not their daughter that is broken.  She is perfect, her body is not.  If you could heal your daughter from being in the hospital all the time and not have her suffer why would you not want that for her.  Even though I know a magic pill isn't going to come a long, I just was surprised by their answer.

Lucy will most likely be getting a g tube soon, and a nissan probably.  You can look that all up on google if you want to know what it is.  She has a problem with throwing up, and she hasn't taken more than 3 ounces a feed for several months now.  She did lose a tiny bit of weight at her last appointment.  It takes 5 hours a day to feed her, and she eats the best for me.  I'm pretty much the only one that can feed her.  I do step away from a feed every now and then for Lucas to take over.  He does a good job with her, so it's nice he can fill in when I need him.  It's very hard though, and a lot of work.  She is very difficult to feed, and she often coughs while eating.  She is such a high risk of aspirating.  I've heard so many different points of view on what to do.  I can't handle anymore input on holding off on this,  in fact many doctor's or shocked when they see she doesn't have a g tube already.  I have been a stubborn mamma, and like to exhaust feeding her a bottle as long as possible.  I feel it's like the only thing I can have her do.  The one thing left that makes me feel like nothing is wrong.  But, it's not so and I am exhausted.  Lucy is going to meet with specialists soon to see what we are going to do.  She does have a neurologist appointment tomorrow.  I don't know if any meds will change, I expect phenobarbital will need to be changed in the near future.  You cannot stay on that after a certain age since it can actually cause delays.  Lucy is doing really well right now with not showing spasms. Now, and EEG probably would tell me it shows something different.  Not sure when we will have one of those again, guess we will see tomorrow.  I'm just glad she isn't physically showing major seizures and that she is smiling and making her cute sounds.  I am happy for any progress even if it is small.  I'm happy to have any and I am grateful for it.

Our life

It's that time again, that time where I realize I hardly ever blog.  I really enjoy reading blogs from family and friends.  Well, I should just say friends.  I don't see much blogging from family anymore.  So, anyway here I am!

Lucy is doing pretty well considering where she has been in the past.  Her seizures have been under control for 5 months or so.  Hope that continues!  I know eventually we will have to change some of her meds, since phenobarbital shouldn't be used for too long.  I guess it can cause more development delays.  Lucy doesn't need anymore of that.  She is pretty delayed as it is.  I know she won't ever be like kids her own age.  She is a year and a half now, which is completely crazy to me.  I have been changing out some clothes the past couple of days.  I have an awesome stock of clothes curtosy of my sister Maryanne.  My other sister Amy stocks me up on clothes for Dawson.  I have had other family members offer lately, but I have so many clothes I am set!  And I am so thankful for that, I fully take advantage of all the clothes I have been given to use.  They all are so nice, it's helped a lot not to have to worry about having enough money for clothing.

Now that Lucy is a year and a half I see people pregnant again that were pregnant right along with me when I was been pregnant in the past.  I honestly can tell you all, don't expect an announcement for anymore children coming for a very very very very very long time on my end.  I would have extreme guilt if I had another child right now.  I had enough guilt to last a life time with Dawson.  I felt so bad I wasn't there for him as much as I could have been when everything happened with Lucy.  Even if everything was fine and dandy I wouldn't be having anymore kids for a while.  I want to make sure I can spend time with all my kids the best way I can.  I have a guilt complex, other people carrry on popping out kids.  That is fine, your life not mine.  I personally couldn't handle it,  just the way I am.   I know my limits, and I have the guilt complex added on to it.  In the future when we have more kids, it will be great.  But, right now I enjoy being  a mommy to my 2 kids.   Last night, Dawson told me to give him kisses.  He says this to me every time I check up on him at night and he is still awake.  He pointed his "black eye" in my direction to kiss (black eye from swing set).  So, I kissed his eye and he tells me it's much better now and he thanked me.  I love that little guy so much, whenever he says sweet things I automatically tear up.  He is a sweet boy that I love very much, that has been my rock on days where I felt like I would fall apart. 

About a month ago, Lucy tried some pedia sure for the first time.  Lucy became extremely sick from it, her oxygen levels were around 80.  I was happy to have my pulse oximeter on hand and a tank of oxygen.  I found some meds to help, and asked my brother Brenden to come over to help Lucas give Lucy a blessing.  I thought we were going to have to call 911 for a minute there, it was pretty scary.  She immediately started to get better once she was given a blessing.  I am very grateful that she turned around and had oxygen in hand.  I'm honestly so use to oxgyen levels and what a tank can be set at, so if you ever have any questions ask me.  It doesn't scare me, I know what to do and how to handle it. 

Lucy will be getting a stroller this summer!  I am way happy about that, that means we are going to get a mini van.  I have been carless for 2 and a half years.  Yep, stuck at home unless I have rides from my parents.  So, all you people complaining about not driving in the winter, guess what 2 and a half years people....  Yep, I'm crazy..  So, this will help mine and Lucy's sanity and I'm sure Dawson too :).  She is so small, that shriners will need to customize a stroller her size.  They think it will help her trunk support and mobility if she is strapped together in a more upright position.  She obviously wants to look around, so lets help her out. 

Well, I'm going to keep enjoying my week of no appointments.  And then General Conference this weekend,  I am very much looking forward to that.  May you all have a blessed week!  Thanks for reading!

 

Tired....

Today I am sooo sleepy.. 
Lucy got to spend the weekend in the hospital.  She has been throwing up for over a month probably almost 2 months...  everyday..  But, it got worse this last week.  Then Saturday, I left for only an hour and I get a call from Lucas that she was throwing up again and was hot.  I hurried home and made sure to grab some Ibuprofen at the store. I check her temp and it says 103.2 and she looked really pale.  I told Lucas it was time to go to the E.R.  and we hurried as fast as we could.  I was told, to always take her to Primary's.  Luckily my parents are like my rock and are always there to help at a moments notice.  They watched Dawson while we hurried to the hospital.  Lucy was admitted and it's always a bit of a process.  Lots of waiting around and questions blah blah blah.  At first they thought she had pneumonia.  She showed some symptoms and they hooked her up to see her stats. Her oxygen level was at an 82.  You shouldn't go below 89 or you require oxygen.  As soon as they gave her oxygen she was smiling and happy.  A night and day difference.  Well, tests were run and x rays.  Lucy had white spots showing, so she has some viral infection.  They want us to do a swallow study to make sure she hasn't been aspirating at all.  But, lots of flu bugs are going around right now.  I was sick last week, so my cold could have set her system off.  She will be on oxygen until my Doctor thinks it safe for her not to be. 

Lucy hasn't shown a seizure in 2 months, I was surprised she didn't have one over this weekend. Hopefully her system won't go off and have one.  Cross my fingers and pray she will continue to be good with that.  And I am in mamma bear mode again.  Don't come near my child or any of my family if you are sick.  Or just let me know so I won't come near you.  I know kids get sick and that is how it goes...  Lucy has been a mystery and we do not know all the answers.  She has been pretty good with getting colds, but the smallest cold could set her off and have her be on oxygen for a while.  It's just that it's flu season and it's really not a safe time for her to be getting these problems.  I would be more relaxed if it was summer, but as long as flu season is on high alert please let me know.  Primary Children's has been getting lots of sick kids this winter,  it's not like the mild flu season from the year before.  I was stronly advised that all my family needs to get the flu shot.  I will need to go do that for Lucy's sake.  Lucy won't be vaccinated ever again because of what happened with her seizures. I need to make sure my family is though, so we don't pass anything to her.

So, I haven't blogged in a while.  Just haven't felt like it.  I try and step back and distract myself with other things than some of the trials I have to deal with.  Writing my thoughts can sometimes be a little to painful and I feel stupid for writing them.  I have deleted a couple before I even post them. 

I have hard days, do I post them on facebook very often?   No, I do not.  Once, I really left a nasty one I was livid at the time.  I still get mad or bothered sometimes.  I say to Lucas why do some people just act like it's no big deal what's going on with our lives?  He is nicer about it than I am.  I am trying to let it go.  Forgive people for not understanding or trying to contact me.  Yeah, I have lost a friend or two because they just don't care and that is fine.  You do find out who your real friends are and that is ok.  We all make mistakes, and we all are imperfect.

On that note, I would like to leave with something positive.  I am grateful for loving text messages, FB messages and comments, phone calls, neighbors who have snow plowed our driveway this winter, random meals, treats, birthday cakes, gift cards, babysitting, driving us to the doctor's, girls nights, prayers, fasting, oufits, cribs, bedding, putting Lucy's name in the temple, cleaning my kitchen, similac coupons and more. 

I know some of you worry about doing something please don't, just talking to me means more to me than you know!  I thank you for doing that!

Most of the time I am positive, and I am glad that I am! 

I better stop typing or I might delete this post before I actually post it. 

May you all remember we all have something to be thankful for in our lives even when the going gets tough!