A little something to think about.

Every now and then I blog post when I need to vent. Looks like I haven't vented in a while so here I go. But, I've had a lot on my mind. Lucy has been sick. And when I say sick, pretty dang sick. She's still struggling with it. But, she's a whole lot better now. Poor girl needed a lot of help with her oxygen needs. She was out of it and sleeping for days. I literally thought is this the illness that will take her? The thought crosses every parent in a similar situation. I knew this virus would be bad. This virus took her to the PICU 3 years ago. It took weeks to get out of her system. And now as I see this year is a bad one for the nasty viruses. I worry for my Lucy, I worry for my friends. What a sucky thing to have to worry about.  I have to think about scary out comes. I absolutely have to, because when you have a kid like mine, it's the future. I was teaching Dawson school yesterday about the organs in the body and how they work. Somehow I ended up explaining Lucy and then I gave him the talk about Lucy. I've tried to explain this a little before. He was just too young to really get it. Soon he had tears running down his face. I did too, and we both cried for a bit. I told him to always be grateful for his sister. It's been a blessing she has been with us for 5 years so far.  I told him how I've felt bad that I have to home school him to protect her from germs. He really doesn't mind and tells me he would rather be home and learn. He is very social, so I have felt bad he is deprived in social interaction. I told him how I felt bad that when he was little I had to really concentrate on Lucy. When he was 2 and 3 life was a blur. I wish I could've spent more time with him. The positive is that my parents have a very close bond with him. They're his best friends, he absolutely adores them.  They have been there for us when I needed them. I would be in a really hard spot if it wasn't for them. My support system is small which has been difficult. I'm so grateful to my parents that they help us. I was grateful that this last week Rachel and Lori brought by dinner. It helped a lot, thank you so much!
Lucy's oxygen needs have been a little rough the past couple of nights, but the virus is nasty and can cause some issues even when the worst has come and gone. We will just have to work through it until it leaves. The important thing for me is to carry on like normal. I'm ok, I don't like pity parties. I enjoy going out so I can distract myself. I think when you stick yourself at home it doesn't help. You have to get out even if it's for a few minutes to recalibrate.

Do you have New Years resolutions? I don't mind having new goals or even old goals to work on. Mine is to continue to work on being a better version of me and not worry about what other people think. I'm taking out toxic surroundings whatever they may be. Let go of the bad or harmful in your life. Don't let other people pull or put you down. Surround yourself with upbeat and positive people. Everyone has a bad day, but don't let them lead your life.  This is my advice to myself and to whoever else agrees.

I've seen and experienced a lot since Lucy. You really see the big picture in life. She is a tough sweet little girl. I have experienced disappointment with her challenges. From what has happened to her body along with the actions of people I've loved around me. I'm working on not being bitter about this, but it's hard. Since Lucy's duplications hasn't really matched how her body should be working, we have gotten another test that I hope to get back soon. It can take 4 months, so I will learn to be patient as usual. It may show she has more going on or it may not. It provides an answer for me if it shows more or not. I'm very excited to hear back what it says. I wouldn't be pursuing this so much if it wasn't for her unique situation. I learned she had a Xq duplication when she was only a couple weeks old.  From my understanding it's so large you can see it under a microscope. But, most of it was shut down from her normal X. So, why is she so severe? Did she just copy too much? Did the little parts left active cause this havoc? Or do we have something somewhere else hiding? That's why I'd like to know.  I find genetics fascinating and like to learn about all of it. It doesn't scare me anymore. This girl has been through the ringer already. I want to know all I can even though it doesn't change anything. It might help someone some day. No research for any disorder would ever be done if we just sat there without pursuing why. I am already so far down the rabbit hole, I have to find out as much as I can with the testing that is out there. And if you're a young family, you should find out in case you want more kids. Right now we don't, but if we ever did I'd like to know if something was carried anywhere. It would be pretty shocking if we did, but you just never know.

Hoping for patience until we get more answers. I pray that we get through this virus season. I'm scared and so are others. Pray we all get through this season 🙏.

Adventures in Lucy town

Well, I clearly suck at blogging. I figure now is a good time to post.
Lucy is sick and her heart rate hasn been higher than it should. I wondered if it had to do with the meds we are weaning her from or what? She does have Adenovirus, but I've never seen a virus give her this issue for over a week. The theory of her being dehydrated while being sick is what the doctors think. Her iv is helping I've noticed. I'm home tonight while Lucas stays over night. It's hard not to be there, but I need to be with Hewson still for feeds. Plus I'm attached he's attached and I am not ready to be gone from my baby over night unless I really have to. She has family and daddy with her tonight so it's ok. I really demand control over everything with her. I have been in constant contact with what's going on. So today we did an EEG on her to see if that has any clues. Um so who walks in? Her old neuro! I thought I time traveled to the dark place in December 2011 when he first walked in our room for seizures. Yeah... So, I don't care for him. He left the hospital and I guess now comes every now and then to help. He couldn't even remember her at first. He was her neuro for almost 2 years. I feel like I sassed at him telling him he better remember who she is. What a dork! He did end up remembering her, but I think he's still a dork.  You know what's funny? The ER is so weird about parents giving routin meds. I finally convinced them. I brought them with me and showed them. They forgot to order them, so I said I am going to do it. They let me, but sent in a pharmacist to look at what I gave. Are you seriously kidding me? Yeah, um dumb. See I always get annoyed!
The good thing is that Lucy was placed in red category at the ER. Meaning she gets to move to the front of the line. That really was nice considering a lot of people came today.
Something I never really thought about is this. I guess a lot of teenagers came in I don't know the times.  I guess they are depressed and suicidal. So they were being checked in the ER. That also breaks my heart. I wish people were happy, but this life can be hard and body composition, hormones, you never know what's going on with someone.

That's it for today, thanks for reading. 

Faith

I think it's time I finally share my birth story of Hewson 😊.

Deciding to have more children was a very emotional process for me. Terrified of what happened and also hope from my first child. One child with a perfect birth and another to terrify any family. I had to rely on faith and take a leap. I was in a really good place emotionally and physically again. I wasn't going to have anymore kids until I reached it.

In August we took the family to Bear Lake, Lava Hot Springs, and then Yellowstone. It was over my Birthday and Lucas's Birthday. I noticed I was a couple days late and thought I would buy a pregnancy test in West Yellowstone. It's funny because you have to ask the cashier for a pregnancy test. They have them locked up in the front. So, I bought the test without telling Lucas I was even late. We picked up a bucket of KFC chicken, it was Lucas's bday so it was his choice of bday meal. We headed into the park and traveled to Mammoth hot springs. Up there I decided to take the test. And surprise! I saw the two lines and knew I was prego. I headed back to the van and put the test on the cooler in the back. I told Lucas to get something for me in the back. He got his surprise birthday present 😊. We were excited and then I got nervous. I took a while in scheduling my Ob appt. I wanted to forget about the past. I didn't want to see anything the reminded me of my nightmare. I love Lucy, but everything I went through was seriously a nightmare. I won't sugar coat it, I went through hell. I didn't want to go through hell again. You see for those of you that haven't experience having a special needs child, count your blessings. It's hard, you mourn your child and what could have been. Do not ever take for granted your healthy children.
Going to the appt my Doctor was scary, but all looked well. Each appt went great and at my 20 weeks appt I was nervous. Please tell me everything is ok, and sure enough everything looked perfect. And the baby was a boy! That was a relief to me. I feel like I would've panicked if I was told it was a girl. PTSD would have swept right in. At my 27 week appt I asked my doctor about a vbac. He was very much against it telling me it's awful and how a c section was so much safer. In the end with all his scare tactics I soon realized it was more because he likes his schedules. That's ok, I understand that. But, for me I needed to have my chance again. I knew it would be better for me and the baby if I had a vaginal birth. And I did a lot of research. And honestly bad things can happen either way. So, I don't understand why a c section was deemed so much safer when it's not.  I have questioned doctors so much and have seen them make mistakes since having Lucy. I question everything now and often rely on myself to make the choice on what's best. So far it has not let me down. You have to take away the fear and have faith. Praying about what is best. Do not hesitate once you find the answer no matter how scary it may seem.
So, I switched doctors. I couldn't believe I did that at first. I was so glad I did in the end, oh how grateful I am. Honestly I was already upset with my doctor at the end of my pregnancy with Lucy. He said a few things that weren't professional and he never checked on Lucy in the NICU. He never checked up on me knowing full well I had a child with problems AND that I was personally struggling. I was upset and knew he was a good doctor. He just doesn't have a lot of patience when he's stressed out. Part of me didn't want to deliver at Davis again anyway. I know where the hidden door is to the NICU. I squirm whenever I have to go to the maternity area for births for family members. I needed to start fresh and somewhere new.
In the end I switched to an amazing doctor who never tried scaring me. And delivers at McKay Dee.

At 34 weeks I had contractions that lasted all night. That night I knew that this little guy was going to show up earlier. I was feeling so tired in the coming weeks. I could just nap all day if I could. I had another night of contractions around 36 weeks. Again lasted all night. I told Lucas don't be surprised if Hewson comes in the next week or two. At my 37 week appt I was checked and dilated at a 2. The next day I was losing my mucus plug all day. And then I started to notice a little trickle. I was wondering if I my water was leaking, it couldn't be could it? I almost went in, but Lucas wasn't home and wasn't going to be till late. I decided to go to sleep and see what the next day brought me. By afternoon the trickle came back. And then I noticed a bigger trickle and then walked up the stairs and had a stream come out. I knew it was my water. Luckily Lucas came home from work earlier that day. By the time my parents came I had stuffed my pants so I wasn't leaking everywhere.
A steady stream just kept coming and sure enough it was my water. And more water just kept showing up. By the time I was hooked up and I wasn't dilating much. It was discovered I had another bag of water leaking. I was told you can have more than one bag of water, weird huh? Sure enough I did and after that broke I went from a 3 to a 7 within an hour. In the next 30 minutes I was ready to push. I pushed 4 times and got him out in 2 minutes. He weighed in at 8lbs 6oz and 20.5 inches long. Exactly the same size as his brother. He just came 9 days earlier than his brother. He was born at 37 weeks 4 days gestation. Had him just before 1 am on April 18th. Everything was great, I was able to do skin to skin immediately. I was never even given that option with my first. So, this was heaven to me.  I had a perfect delivery with him. I only took Motrin at the hospital with him. I didn't need big drugs and I came home feeling great. I trusted myself and took a leap of faith. I was able to have my perfect pregnancy and delivery and I am so grateful for it. My body is not broken. I felt broken after what I went through.. I really did and I needed this.
Sometimes our only option is a c section. And that's ok, I'm grateful I could have one to safely deliver my daughter. Sometimes it's not the only option and you should be given a choice. No matter what happens do your research and pray about it.

I am so thankful for this beautiful boy.

Defy gravity

I decided I needed to do a blog post for what I wanted to write down.

Lucy, had test results come back for the X inactivation test. The test shows the amount of duplication/triplication in her body. The results showed that she mostly shut down the duplication. However, we do not know about how much Mecp2 she has. Genetics wanted to do another test called Exome sequencing to do a thorough check of all the chromosomes in her body. I told them I really thought it's because she has a lot of Mecp2 in her body. Now, you may be completely confused about what this all means.
I have explained this to a lot of people, but I see the deer in the headlights look they give me. I know it's very confusing.
So, Lucy has a duplication on the long arm of her X chromosome from 22-28. She also has a triplication on part of 28. She has a 50.4 mg duplication and a triplication of 3.5 on 28.
That is a HUGE amount copied. Now, as a girl we have 2 X chromosomes. One shuts down the other when we are born. The same can happen if you have a duplication. So, often times if a girl has a duplication she can shut it down and be relatively healthy. With Lucy she also shut down most of the duplication. Now, my theory is that she didn't shut down the triplication on 28 where Mecp2 is present. If you have too much or too little of this it makes your whole body go out of wack. We all have it in our bodies. It's just most of us has the right amount so we don't have problems from it. If you have too little you have Rett's syndrome. That happens in girls, boys don't survive. If you have too much it's called Mecp2 duplication. Now, that mostly occurs in boys. The reason being because they don't have 2 X chromosomes. It cannot be shut down with the Y chromosome.
The next step for Lucy is to do a Mecp2 test to see how much is in her body. Insurance wanted a further explanation on this. We are hoping it will be approved. Lucy's blood has been sitting in the lab to be tested since June. It's been a long process with people not staying on top of all the paperwork. I've had to nag nag nag.
I have done a lot of phone calls and emails to find out more about the X inactivation test we got results on. It wasn't clear on what cells were shut off and left on. But, we do know mostly her cells are normal.
I got an email from Dr.Zoghbi. She is the reason why we have hope in finding a treatment for Rett's and Mecp2 duplication. Just google her and you will see how amazing she is. She told me that even a little bit of a change with a duplication can neurologically change things. Since we cannot test the brain we cannot say what happened there. Her theory is that it's the Mecp2 levels that have made her this way. However even with the other cells she could be having problems from this. We cannot pin point and say what those would be. But, we obviously have the evidence that Mecp2 can make these results happen unfortunately.
Once we can get that Mecp2 test done that may give us more clues. I pray insurance will cover it, otherwise it's 500 dollars. No matter what we need to know.
Dr.Zoghbi said that without a doubt Lucy would greatly improve once they can get a medicine out. They are so so close you guys. They have sent their findings to be published. That can take months or up to a year. I cannot say what the findings are, I was not told specifics due to the sensitivity of the project. But, what I was told gave me such hope. I won't even post the little info on that I heard. I don't want to jeopardize anything in their research and blab on the internet.
This is from the 3 year study I raised money for last year. So, thank you to those that donated to that project. We are currently doing another one that is 2 years as well. I was told that could help bring a medicine quicker on the market. So, I'm excited we have more than one project to help us reach our goal. The 2 year needs a lot of money still. If you want to help with any fundraiser ideas please let me know. If you like to shop on Amazon, go to amazon smile and choose Rett syndrome research trust as your charity. It gives some money to Rett's syndrome and Mecp2 duplication. It doesn't cost you anything! It just gives some of your purchase to a charity, isn't that awesome that amazon does that? If you choose the charity it saves it so it will donate each time. Just make sure you go through amazon smile first :).

I admit that I felt heart broken a couple days ago. I felt as though my child was almost normal. If she didn't have that triplication where Mecp2 is. It was too much too shut down. I felt like she was so close..
But, then after reading Dr.Zoghbi's email it made me think. Lucy could have not shut down the area and she wouldn't even be alive. I may not have been able to meet her. This sweet girl has a huge amount in her little body and yet she fights. She fought through as a threatened miscarriage.  She fought through when her body was growing behind in the womb. She fought through a 7 week NICU stay. She fought through Infantile Spasms, Hydrocyphelus, G tubes, Collapsed lungs, and countless hospital stays. She cannot even lift her sweet head, but she let's us know she wants to be here and is even smiling as I type this.
Some parents may just give up after a diagnosis. Some people may question why I keep fighting. I fight because she fights. She is my child and I will not give up on her. We have real hope for her with what they are doing in the labs right now.  To improve her quality of life by just 20 percent would be huge for Lucy. I want to help her as much as I can!
If you are LDS and reading this it even says on the disability page to find out all you need to know about your child's condition and to help them.
I don't care anymore about what people think. It may hurt being shunned by those I love.  I've made a saying and this is how it goes. You find out who really is there for you once you have a child with disabilities. It's so flooring and shocking to me, but it's a bigger loss to them than to me. How unfortunate it is to feel like I'm wearing the Scarlett Letter for taking care of my sweet medically fragile child.
The other day I honestly thought to myself that I really don't give myself enough credit.  And I was having my own Ah ha moment.
"Some things I cannot change, but till I try I'll never know."
Why not defy gravity? I love the musical Wicked. And I think of Lucy whenever I hear the music.

We will defy gravity Lucy and we will fight for that medicine.

Unwind

Lucy will be turning 3 on Saturday! We are so excited! So much has happened in just 3 years. A major growing experience. And a growing up experience. It's actually insane to think about. You never know how life can take you off the yellow brick road. You are walking happily and then bam! Those monkeys throw you off that road onto unpredictable road. Seriously it happens. Then, every now and then you find the yellow brick road again and carry on your journey.  I felt for a while those dang monkeys were turning into flies that just won't leave you alone. Well, I found my fly swatter and smashed them to bits. Answered prayers with life saving treatments. Lucy got our little cold we were sharing. And she actually got over it! First time in so long where she didn't need to be rushed to the E.R. What a blessing that was for me to see! This time of year I hate so much now. I know the dang germs that come out. And I'm so not in the mood for it. Last September and October were very rough. So, I'm hoping that they will be kind this year.
I went on FB for a few days to share a message my husband directed. In that time I saw why I was taking a break from FB.  FB drives me nuts these days, I love so many people on there. But, I see too much negative outlooks on lives. I know how hard life can be. Boy do I know that! But, it's not healthy to live in constant sadness. It doesn't do any good to you or your family. If you are feeling like life is so hard take a time out and do something for yourself.  Pamper yourself, ask for help. Just do it, we all need TLC!  Do you expect a garden to grow if it doesn't get water or sun? We as humans need that too. Take some time to recoop, I recommend it!

Fun trips and glasses

We had some fun recently going on a family vacation. We went to Bear Lake, Lava Hot Springs, Island Park/Yellowstone.

We had a great time and went over my Bday and Lucas's Bday. Bear Lake wasn't as fun as we imagined so we left earlier to more fun. Lava hot springs was really nice and hope to return in the future. Island park/Yellowstone is my home away from home so I loved it. Except our tire got a hole in it. It seems that lately when we go up that way we have something happen to whatever car we are driving. It's driving me nuts! We did have some fun in the park with fun surprises. Dawson loved the buffalo. He loved feeding the fish at Big Springs. I love walking on the trail there. Lucy did a great job and had a good time too. We did go to Soda Springs on the way back. My friend is from there. It has a man made soda geyser and a carbonated spring. It tastes like club soda and it's safe to drink. 

We plan to go up to Yellowstone again this month since our time there was cut short from the tire issues. Plus, I like to go when the rut begins and the elk fight. More bears are out since hybernation happens soon. They come out lower elevations to get food. 

We found out Lucy's vision has improved and she is near sighted along with a little bit of cortical visual impairment still. Lucy got a prescription for glasses! I just ordered them and am so excited for her to wear them.

Fun days

Yesterday we went to the Syracuse Fun Center. I think called "The Rush" or something like that. We had some fun and it wasn't crowded. Lucy actually went laser tagging with us against some other kids and parents. We staked out the best position. Our team won and I won the overall points. I felt pretty awesome. Lucas's laser gun went out so he felt a little jipped. I never thought I'd say that Lucy went laser tagging lol. We had a great time and enjoyed our stay. Today I took the kids all by myself to pick up Lucy's meds. I forgot to get them the day before and Lucas has to work late tonight. I packed them all up and we got the meds and even some groceries! A lady that walked by said Lucy looked like a doll. I've heard that a lot, she does though. And then another lady asked me if I needed help when we got to the car to leave. I appreciate the nice people at the store today.

Dawson has been learning from the Waterford program from the state of utah. It's a free preschool program that is supposed to be really good. We went to the orientation a week ago and we started right away. We really don't have to until September 1st. It's 15 minutes a day as a requirement 5 days a week. He does more on there because it's fun for him. I've already noticed the difference and am already very proud with how he is learning in just a weeks time. Freebies2deals talked about it and so I signed up and so glad I heard about it.

I've been off Facebook for almost 24 hours! Woohoo! Haha :).

Not sure how many people will read this, but I'll be on here for now.

Thanks for reading,

Melinda

Why I'm leaving Facebook

Like my title? I just like to copy the dramatic headliners I've laughed at so much lately. Something completely opposite of what you will read on the blog post. Except, I'm really leaving FB. I'm not saying I will be gone for a long time, I'm not saying I will be back either. I just have to go ok?Facebook is too much for me to deal with. I've thought about this for a long while and I know without a doubt I need to be off right now. I live in a world that isn't like most. I find it hard knowing where I fit in right now.  I love staying connected with people I really do. It's just if most of you saw what I read and the people I know you would be very overwhelmed.

I was given a healthy child in 2009. In 2011 I was given a very fragile child. It turned my whole world upside down.  I don't live a normal life. I also don't want it to be the only life I lead. I'm in a limbo land wondering where I fit in. Reading posts on Facebook has become too overwhelming for me. So much sadness and negativity is around. I advise if you know anyone dealing with disabilities in the home give them a hug, call them, do something to let them know you care. I cannot say what I read, but lots of people in that community are suffering so badly right now.  Some parents that have left this life because it was too hard for them. I hate seeing so many that suffer. It hurts my heart so much.  I see so many posts that it's become very difficult. It's also difficult to read comments with how ignorant people can be. I love reading comments from a lot of you.  I do believe that FB is a surface type way to say I did my part by 'liking' something. I am not perfect and I just believe in general a lot of us should be more involved like we used to be before social media. All in all I just am done with it.

I'm not upset with anyone, just feeling like I need to focus on other things in my life. Facebook feels a lot like highschool. And I didn't do well in highschool. If you want to be more involved in my life message me and I can give you my info.

Love to all! I will be deactivating my account in a few days. 

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!

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.