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!