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!
 

Summer catch up

Time to do a little re cap of this summer. 
Lucy was blessed last month and it was wonderful.  Lucas gave an amazing blessing, I was sobbing through it.  Lucy looked gorgeous in her dress, we took pictures but Lucas still needs to edit them.  I will post once they are finished. I was greatful for that day and everyone who came. 
The last couple of months were rough for me, I was praying for a way to get motivation again.  And guess what?  I found it...
I tried these awesome skinny wraps that are simply amazing really.  And then I decided to let others know about it.  I have missed teaching and making a difference in people's lives. And I have found that.  I honestly don't think it was a coincidence that this just happened.  It was an answer to my prayers.  To have people you care about feel better including yourself, is honestly a wonderful feeling.  I just ordered some other products and can't wait to try them out as well.  Seriously am so excited about this and love these magic wraps. 
Lucy has hypsarrythmia again and the spasms are there too.  Totally a bummer..  When I first found out I just had to shrug my shoulders and say to myself that's life I guess.  Our Neurologist we had before described it like you are in a Coma.  That is completely horrible.. I do know when Lucy has glimpses of awakening.  She is in there, and I can see it when it happens.  Like the time she was in the tub and looked right at me and was laughing and smiling for a good 3 minutes or so.  I sob while I write this, because it's wonderful when those moments happen.  But, it's heart breaking knowing my daughter is in a coma like state most of the time. Dr. Sweeny asked me if she responded to steroids the first time.  He is our new neurologist, since our other left to another hospital. I think he assumed that it didn't and it was just her chromosome issue causing her to be non responsive.  When I told him she acted different on steroids he acted more hopeful.  He said then we are going to try again since she responded so well the first time. 
Lucy will turn a year old on the 27th.  I was wondering on what to do for her Birthday.  But, I knew the answer. She will get her Birthday cake and ice cream just like any child would.  She may have a frail body, but she deserves to have her special day the same way. I will just be her arms and her hands to help her. 
Thanks for those of you that have prayed and fasted on her behalf.  She needs those prayers constantly.  Pray her Hypsarrythmia goes away this time. 

Compiled News

I just wanted to list some updates real quick...

1. Lucy is going to be blessed on Sunday, I am so excited!  It will be certain that my makeup will be all over my face after Sacrament meeting. 
2. Lucy is getting a helmet!  Her head is really flat and needs help.  I picked out a cute design that has hearts on it.  It was ordered yesterday, so hopefully we will get that on her soon!
3. The Government may finally help Lucy here soon!  That would be great!  It will really help to have that money to give aid to Lucy and the equipment she will need.  Cross your fingers and say a prayer that everything goes according to plan! 
4. We went to Yellowstone and had our car break down in the Park, glad my parents were there to help us. The starter went out at got it fixed at Old Faithful. We spent more than we planned, but it was still nice to get away for a little bit.
5. I am pretty excited about having a garden, it's been fun!  Not evertything has worked, but it's been great to have.  I am trying to pollinate the watermelon plant with a paint brush.  Nothing is growing on it, but finally the cucumbers plants are producing cucumbers.  I was getting worried about that, but looks like it will work out.  Our Corn is growing nicely and the green beans have been producing really well.  And of course our Crazy Pumpkin patch is all over the place.  I planted some carrots and cilantro in place of where the onions were supposed to grow.  I don't know know what happened to the onions, I must have done something wrong.  The cilantro is growing and so are the carrots.  I got the cilantro in the dollar section at Target.  It had a little plastic green house to grow them.  They really work!  I love that little dollar section at Target.
6. I cut down the crazy plant that is wrapped around our mail box. Lucas named it "IT" from the Adamms family. 
7. We got our fence mostly fixed, the company that did it is horrible and haven't finished the job. And they over charged us, they aren't getting paid till they fix it.  They are called Pro Link Fence, just so you know to never go to them if you need a fence.
8. Lucas and I are playing Halo again, we love that game. 

Hope you all are having a great summer!

Think before you speak

You know that saying "Think before you speak" people need to do that.  I mean we all have those moments, but the things I have heard lately are beyond idiotic.  Here are examples.

"How come your child has a feeding tube?  What is wrong with her?"
"Lucy is 9 months? She can't be 9 months, she doesn't look like 9 months."
"Why does the baby have a fat head?  Why does she have fat feet too?" 

Oh and my personal favorite..

"Don't take this the wrong way, but I was expecting your baby to look like a "Vegatable" when I saw her."


Yep, and more of that happened all within a week.  One of the comments was from my niece the "fat head" comment.  But, it still hurts.  Another lady tried to talk about my baby, but I brushed her off.  90 percent of the comments that were said, were from people I have never even met.  How insensitive and rude are you?  I know you are curious, but it's none of your business.  If I don't know you, stay away from me if you are going to get in my business.   Unless, you are going through it yourself. 

I don't go to Relief Society for this very reason.  I don't want to be asked a million questions from women I haven't met.  I am really done talking about it with people that I don't know.  I almost lost it on a woman today.  If I wouldn't have been at Church I might have exploded, I am near the breaking point. 

Yes, something is wrong with my child, what's your excuse?  At least she has one.