It's an update

It seems like we are in the midst of being tested yet again.

Last night was the first time in two weeks that Liam had tolerated night feeds at full rate. We're finally back to his old rate of 85 mls per hour and in a few days will have to try yet again to slowly increase the feed until we get to 95mls per hour. 

This morning he woke up with a runny nose. He's also been coughing a lot requiring extra breathing treatments. But those extra treatments are what's allowing him to tolerate feeds. 

I'm suffering from migraines. For the first time in awhile my fibermyalgia seemed to be under control. Pain was minimum. Then out of nowhere the migraines started. They've been lasting up to 3 days long. Give me 1-2 days migraine free before another one strikes. As of 1:20am I've been miserably in pain. I can't function. The migraine was so bad it woke me up from a dead sleep. I was in tears. All I could do to find the slightest bit of comfort was to sit up, leaned over a pillow and rocking back and forth. Meds haven't help. Not even migraine meds. The pain has been so intense I couldn't eat. I've felt sick to my stomach and miserable all day. Wearing sunglasses inside and hanging out in the dark. Late afternoon I fell asleep for 3 blissful hours but didn't wake up much better. I was able to get son food in me as soon as I woke up but then it was back to bed. 

This is my busy week. I have far too much to do than be stuck in bed. I know God won't give me more than I can handle and I'm thankful that Justin has been home to help with the kids today so that I could attempt to get rid of this migraine. I'm also thankful that Liam is finally tollerating night feeds. 

Trying to stay positive about everything. Focusing on what I can be thankful for about the situation instead of how miserable I am and who I can blame. There's no use in blaming. Things happen that's put of our control. 

I wish I could give a better update but this is all I have in me. I can't think straight at the moment but I have faith things will get better. I pray that they will. 

Doubled up on Liam's breathing treatments. 

Was able to braid lanies hair for her this morning. 

And 3 years ago today we began our feeding tube journey. 

How To: Make Crayon Drip Pimpkin's

It's fall ya'll!!!

It's here and it's official.

Do you realize what that means??

Cooler weather,

leaves changing color and dropping to the ground,

and

PUMPKINS!!!

There's so much you can do with pumpkins!!

A million ways to eat them!

Endless ways to decorate them!!

I love pumpkins.

Today's post I want to share this technique I JUST learned about.

It's called 'Crayon drip pumpkins'.

Sounds pretty cool huh?

I think it is.

And so much fun for the kids too.

I came across this technique while searching for decorating ideas.

Pinterest is my fave place for ideas.

So what is a crayon drip pumpkin?

(Image of crayon drip pumpkins I found on Google search)

The color possibilities are endless!

How do you make a crayon drip pumpkin?

It's so simple.

(image from polyvore.com)

1) Choose your pumpkin. White pumpkins give a canvas type effect and make the colors stand out more. You can use any color pumpkin you want though.

(image found on google)

2) Choose what color crayons you want to use on your pumpkin. You can use any brand of crayon. Crayola has those color coordinated packs and glitter crayons as well if you want a little sparkle.

(image from mk-creations)

3) Take the paper off your crayons.

4) Glue the crayons onto the top of your pumpkin. You can use basically any kind of glue: elmers, tacky glue, E6000 and i've even seen hot glue. But it doesn't make sense to me to use a hot glue gun because the hair dryer will just melt the glue again.

5) Glue the crayons into the top of the pumpkin as shown below:

(Image from http://blue11interiors.blogspot.com )

6) Use a hairdryer to melt the crayons. Melt to your desire.

(image from purehome.com)

7) Let the crayons cool and harden before moving.

BAM that's it! You've made a crayon drip pumpkin!

Mini Photoshoot: B&W Kitty

I love my cat. Like really love him. He's like my kid. I helped his momma kitty give birth to him and his sibling. He is 6 months older than Lanie and spent my pregnancy curled up around my belly up until the day she was born. 

Jack has always been protective and watchful of her. He's such an amazing loving cat. Which is why I decided to do a mini black and white photoshoot featuring my sweet furry child. The one who will never grow up. 

Lanie and Jack. Now that she's older and less rambunctious he let's her pet him, play with him and he even sleeps on her bed with her sometimes. 

I love this pic of Lanie giving Jack kisses. 

What You Expect Isn't Always What You Get

What do you expect to see when you walk into your child's preschool classroom for pickup? 

Kids all singing along for music time?

Or perhaps playing with blocks?

Maybe some finger painting (with a bit of paint on themselves)? 

Why yes. That's exactly what I expect to see. Lots of smiles and laughter to boot. 

Today? Today was...heart breaking. 

A children's learning video was playing on the tablet and all the kids were dancing and singing along. 

Except Liam. 

Where was he you ask?

Well Liam was as far away from the other kids that the teachers would let him get. His eyes were wide and uneasy. He had his fingers in his ears trying to shut out the noise. He was in his bad place. 

Liam had had too much. What upsets me more is that the staff didn't recognize what was going on. A staff that deals with mainly IEP/special needs kids. 

One even asked me what he was doing when he had his fingers in his ears. I looked at her with a raised eyebrow. Really? You don't recognize the signs of overstimulation when they're stairing you in the face?

When he saw me he came running as fast as his legs would go. I could see the worry and pain in his eyes and stooped down to his level. Liam ran right into me and kept climbing until he was in my lap, grappled on to me as tight as his arms and legs would let him. His head nustled into my neck in an attempt to shut out the world. 

I could have cried. I would have cried. I almost cried. 

I held him tight was we walked to the car. Strapped him in his car seat as I told him we'd be home soon. In a attempt to make him feel better, I asked if he wanted his cars. He denied them. "No" he said and shook him head. Ok buddy. I get it. 

On the way home the windows had to be rolled up in attempt to shut out light (thank goodnes for tented windows). The radio all the way off. He just couldn't have take anymore stimulation. 

At home I had to keep the curtains closed, making sure to shut out as much light as possible. The tv was turned down to a bare whisper. I basically resorted to what I used to have to do when he was a baby. A dark quiet room. 

Liam wanted his cartoons. I couldn't deny him. Not today. Some nice calm bps cartoons. Liam curled up into a ball and laid there just relaxing. It was quiet time. He didn't want to be touched. He didn't want to be talked too. He just needed to be left alone to de-sensitize. 

To see him like this breaks my heart. No one seems to understand. I don't know why he's like this but he is. I just want to find a way to help him. 

I've researched different ways to help him with his sensory issues. I've been working with him for years on this. That's the only reason he's as good as he is now. How to I help him process everything at school?! 

The only idea I have is to stay with him during class. As many days as it takes to teach his teachers how to deal with him. They need to know how to recognize the signs that he's being overwhelmed. They need to know what they should do when the signs start popping up. 

He needs to be taken away from the group, somewhere quiet. If only for a few minutes. Then he can be reintroduced to the class. 

I need to see how they're interacting with him. How he interacts with them. 

Call me a helicopter mom if you want but if we don't fix this now it's going to impact his learning abilities. This year and next year are critical. After that it's main stream schooling with classes 4 times bigger than his current. If he can't find a way to process with only 5 kids how is he going to cope with 30? 

This is my son. My baby boy. Seeing the pain in his eyes is just too much. As we've done everything else, we will find a way to overcome this. We will find a way to conquer this. 

The Timehop Perspective

It's hard not to campare today to the past when timehop lays it all out there for you to see. As time passes you tend to forget things...or in our case, we wish we could forget things. Timehop is just another tool I use to remember how bad things used to be so that I can be greatful for what today brings. I calm it the timehop perspective because it changes your outlook. Take for instance:

This was Liam 3 years ago today. I was trying to wake him up to get his feeding in. He was still eating all by mouth here but he was eating less and less. We had already gotten the news that he was failure to thrive and would be getting a feeding tube. I was still fighting and killing myself to get these feeds in him to prove that he could thrive and that we didn't need a tube. No matter how hard I tried to wake him up he just wouldn't. The few times he did wake up he ate just a tiny amount before falling back asleep. 

Tube feeds make me so angry and frustrated, at times I want to throw his pump through a window or wanna scream because Liam refuses to eat. Looking at this picture reminded me of how hard it was to get him to eat as a baby. How he literally could not stay awake to finish 1/4th of the bottle. He slept all the time. He started loosing weight. It got scary. If it hadn't been for the feeding tube, Liam would have wasted away until one day his body wouldn't have been able to fight anymore. I'm just gonna say it how I'm thinking it, "damn am I greatful for that feeding tube". Yes. It's true. My son had survived CDH, there was no way I could have let him loose the battle just because he couldn't eat enough. 

I've met many people who look down on me because I "let" my son get a feeding tube. People who blame me, saying I didn't try hard enough. You know what I have to say to those kind of people? You obviously haven't walked in my shoes. You obviously weren't there through my alarm going off every hour so I could spent 30 minutes doing everything I could to wake Liam up to feed him. You obviously weren't there to see how I hardly ever slept because Liam's needs were bigger than mine. You didn't sit there holding your baby crying because you knew if he didn't eat it would mean very bad things. You weren't there when I begged and pleaded with the doctors to give him more time to prove he can do it. Ypu weren't there when they explained that there wasn't anymore time left and that if they didn't do it soon things would get ugly for Liam. You weren't the one that felt defeated and like a failure. Nope you weren't there so don't judge me, my family or tell me how the situation is supposed to be handled. 

My unsolicited advice to you is to think before you judge the situation.

I love my son and have always had his best interest at heart. I would never do anything that would cause him harm. I only want his quality of like to be better. He doesn't deserve to be on quarantine in fall/winter/spring. He deserves happiness and to experience life. He deserves trips to Disneyland I'll probably never be able to afford, to be able to walk through a crowded mall without getting sick, to go to the theaters and watch movies. He deserves long trips to the beach to laugh and feel the sand in his toes and eat fish and chips. 

Liam deserves to be a kid and not a patient. As each year passes, I see him getting closer and closer to this goal. It's amazing and wonderful. I may not be able to take him to Disneyland but I can shower him with my constant, unwavering love for him. 

If there's one thing I learned on this journey, it's that love is important. You must surround yourself with love and those who love you. That's what makes life special and amazing. That's a life worth living and we've got plenty of love. 

Surprise Phone Call

          Despite going to bed with a headache last night,

waking up at 11:30p with a horrid migraine that had me in the fetal position in tears,

and waking up still with a headache,

I honestly thought today would be better.

I had gotten both kiddos off to school,

came home and was going to enjoy the peace and quiet.

Justin was at work so I had the house to myself,

and I was going to enjoy every minute of it,

and nurse my aching head.

I couldn't fall asleep so I took ibproffen.

Then I decided to make myself some food.

I ate in quiet and decided to do a bit of blogging.

After all...

I was proud of the post.

It was emotional and true.

Truth is important to me.

How can I give an accurate picture of what CDH does in our daily lives if I'm not truthful?

So again I spewed by guts out.

And for that I was proud.

(You can read the post here)

I decided to work on my book blog and marketing.

Then my phone rang.

(That's when the morning took a turn)

Surprise (yes genuine surprise)

It was Liam's school.

They noticed he was shaky.

His arms shook when they usually didn't.

His legs were shaky as well.

His equilibrium was off causing him to fall.

His face paler than normal and marbled.

And to top that cupcake off...

He was retching.

They knew this wasn't Liam.

He'd never behaved this way.

They called the LVN to the preschool rooms to have a look at him.

They called me right after to inform me.

As soon as she said Liam was acting weird I grabbed my keys.

I was out the door before she could finish telling me everything.

I told her I'd be there in 5 minutes.

When I got there I noticed all these traits as well.

Not just that but when I picked him up,

his entire body was trembling.

'Let the good times roll' I thought to myself.

One symptom on its own would be no biggie.

All these mixed together was another story.

Mix all those with what else he had exhibited at home and I knew something was up.

He had also slept 12-13 hours last night.

Liam never sleep that long.

He had diarrhea for the last 3 days and a killer diaper rash because of it.

This morning he was breathing heavier.

He seemed better after the treatment.

He was a bit quiet this morning,
and there was that whole conversation this morning.

I'm not sure what it all adds up too,

but he sees his pediatrician tomarrow.

Good day for a check up as well.

For now all I can do is comfort him.

He's cranky today and needs his mommy and cartoons.

Daily Struggles

While getting ready for school Liam seemed excited to go. On the way to school I tried to have a conversation with him. I asked if he was excited for school today. He said "no". 

I was confused. He's never said no to school. I asked him why not. He mumbled something that sounded so very close to 'I don't wanna talk about it'. 

I turned the radio off after that so I could hear him better. I asked him again why he wasn't excited for school. He responded "I don't like it". 

Huh?! What?! Since when?! 

I left it alone and finished the drive to school. 

Once at school he was super excited about being there. SMH so confusing. All I can gather is that he just didn't want to talk. He was probably still tired. 

Liam's speech is getting better but I'm unsure if the words he says are what he means. At times it seems there is a wire crossed in my brain. Things come out that just don't make sense. 

Other times Liam's words and the meanings are clear as day. Like when he really wants something and I'm hesitant to give him it he says "pretty pretty please I have ______?" It's pretty clear what he's saying and what he wants. 

Liam is like a puzzle or sometimes a brain teaser (a really hard puzzle meant to exersize your brain). You have to have a decoder ring to understand what he's saying and what he really wants. 

At times it can be very hard. There are days when he talks it's so jumbled and unclear I have no understanding what he wants. It's frustrating what he wants. On those days I get eye level with him and ask him to say it again. Even then, many times that tactic doesn't work. He ends up mad and angry and frustrated. I end up mad, angry and frustrated. We will both be in tears over it. I have to ask him to grab or point at what he wants so I can understand. But there are days that doesn't work. 

Some days it seems that not only is gibberish is all that comes out of him mouth but his brain has issues processing what I'm saying. If it's over something in the kitchen we will end up going through every cabinet, the fridge and snacks just in hopes to find what he's asking for. 

Some days everything is "no". No matter what it's no. He will ask for something (say fruit snacks) and when I had them to him it's "no" he doesn't want them. 

Liam is the hardest puzzle I've ever tried to put together. I know him better than anyone and I still get stumped. Some days he's just so hungry that he can't decide what he wants or he can't think clearly or have the energy to clearly say what he wants. It took me a long time to figure this out. On these days where nothing makes sense, he gets an extra bolus. 

He then gets angry at me that I'm bolusing his feed instead of getting him something to eat. But after we try 10 different foods it's time to throw my hands up and admit defeat. After the feed he feels better and has more energy and his spec his even clearer. This isn't always the case but sometimes. 

I thought that nothing could get more confusing than when he couldn't speak but I was wrong. These days we are both frustrated beyond belief. This frustration opens up the blood gates. All my anger with CDH pours out like a chink in a damn. Once cracked it fails to hold in the water. 

There've  been days when Liam and I hold each other tight  and cry out our frustration and anger. Some days it just needs an outlet. We both feel better after a good cry. 

I curse and cuss CDH for what it's done to my son, to our  family. For the struggles we go through on a daily basis. 

All we want is a little happiness. A chance to forget about how shitty CDH is. We didn't ask for CDH to strike our family. We didn't ask for the pain and misery it brought us. We're just trying to find a way to make it work. Because that's what we do, we survive. 

NICU Nurse Appriciation

Today I want to take a few minutes (or a few lines) to say thank you to the NICU staff at UCSF for caring for my little Liam.

Mostly I want to say thank you to do particular nurses:

Nurse "Dr. Sue" as Lanie calls her:

Sue,

Wonderfully Brass Sue. Your "touch love" got me through so many hard times. You recognized when I couldn't emotionally handle a kind word. You seemed to know just by looking in my eyes whether or not you could be kind or go straight to the facts. You prepped me from the first day. Made sure I would be ready when time came to take Liam home. With your teachings I became confident that when the time came I would be ready. You offered me a tissue and a pat on the back when I needed. You let me cry when I couldn't hold it in any longer. You fought the doctors for Liam when you thought they were wrong. You were strong when I was weak. You were the mother figure I craved for when I was alone and scared. Because of your teachings and the knowledge of what to expect, I was able to stay strong for my son. When Liam was finally able to cry you used to tell him "there's no crying in baseball" and he used to hush for you immediately. We still laugh about it, as well at the times his sedation wore off and he would mess with you by opening his eyes to look around, yet just when you would turn around to see he would close his eyes. He loved you. He bonded with you. You made us both strong. I can never thank you enough for what you did for us. Your care for Liam has forever changed our lives and we are so thankful and feel so blessed to of had you.

<3 p="">

To: Cindy:

Sue,

I don't even know where to begin. You were the emotional one. The one who would hug us when we were down. The one who always knew Liam was upset before his monitors would even show it. You fought for Liam and what was right. You also taught us how to care for Liam once we got him home. You knew this journey would be emotionally hard on us even after NICU and tried to give us the tools to get through it. You recognized the signs of PTSD in us and because of that I went to the doctor when I got home and got meds. If you hadn't of recognized the signs, if you hadn't of said anything I wouldn't of gotten help, and I wouldn't of been able to handle everything I went through at Liams side. For you Liam would always smile. I knew he would throw fits until you would pick him up and love on him if that's what it took. But no, you loved him with all your heart so he only had to look at you with those big brown eyes and you'd cave. He'd win and you'd get to hold him. Many times I remember walking in to see Liam and there you'd be holding him, rocking him or just talking to him. It was a sight that always pulled at my heart strings. I knew when he was with you I had nothing to fear. I will never be able to thank you enough for loving him and fighting for him. Thank you Cindy.

<3 p="">

Thank you the wonderful NICU staff Liam survived what should have killed him.

And now he is a happy, mostly healthy little 3 year old boy.

Thank you, Thank you, Thank you.

Going Gold

Oh Paris Hilton got a new puppy?

Your Instagram post didn't get like a million likes?

Sorry it's hard to care about such trivial things when there are babies being born with the life threatening birth defect Congenital Diaphragmatic Hernia or children battling cancer. 

I'm always trying to spread CDH awareness because my family was affected by it. My son was born with it and survived even thought he wasn't expected too. We watched as other babies born with CDH fight until they lost the battle. It's hard to watch and I'm positive it's 500,000 times harder for it to be your own child who doesn't survive. 

You may not know what CDH is but I guarantee you know what cancer is and how devastating it is. But do you realize how devastating it is for a small child to fight cancer? I would guess that 95% of people scroll past those pics of sick kids battling whatever disease or birth defect they have. All you can think about it how horrible it makes you feel to see a child sick and struggling. Did it ever occur to you how these children felt? 

I did. Every time I go to scroll past a picture of a sick kid, I feel guilty. Instead I look at their faces, into their eyes if I can and say a silent prayer that they heal and become stronger so they can beat what ails them. 

This month is pediactric cancer awareness month. I'd like to introduce you to a sweet precious little girl who has fought so hard to overcome cancer. She's been cancer free for over 400 days now. With her parents help they strive to spread awareness about pediactric cancer. 

Meet Lilly. She's a sweet girl with a smile that can melt hearts. She's amazing and spectacular and a survivor. Please check out her Facebook page http://www.facebook.com/Lilly.bumpus.9

You can also find her on Instagram. 

Go, show this little girl some love and support because just because she it now cancer free doesn't mean she isn't still effected by it and everything she went through to get rid of it. 

I'm going Gold for Lilly and supporting her cause in spreading awareness and efforts to find better treatments for pediatric cancer. 

Two Things Every Girl Needs

          I'm pretty sure all a girl really needs to have confidence or to overcome the worst days is a good mascara and lip balm. You'd be surprised how much confidence you have when you done some mascara and apply that lip balm. 

          What gets me through the worst of days may seem trivial to you, but it worked for me. When I feel unsure and shaken or am just having a horrible pain feel day (thanks Fibermyalgia) I done a little mascara and lip balm and feel much better about myself. Whether my hair is thrown up in a messy bun or flowing free, dressed in sweatpants, as long as I have my mascara I'm good.

          These two little things have gotten me through the last 3 years of hospital stays and surgeries for my son Liam. I can't go anywhere without my EOS lip balm and Younique 3D Fiber lashes. 

The 3D fiber lashes are amazing. I have long lashes but these make my lashes even longer and so beautiful. With these I can conquer the world.

You can read my review here or you can purchase them here

          I've had a bad week with my fibermyalgia acting up. It's was so bad I didn't have the energy to put on my mascara. Today I forced myself to done my mascara and lip balm and I feel better for it. It hasn't done anything for my pain of course, but for my confidence, it's made a world of a difference.

Incredibly Undeniably Painful

I just got done scraping my theigh on my desk. Sure it should sting a little then the pain would go away and I'll have a little scratch. That simple. 

Nope. Instead when I ran into my desk accidentally and scraped my theigh accidentally I was doubled over in pain. 

Pain radiated through my body to the point I thought I'd vomit everywhere. Pain to the extent of making me both dizzy and immobile. I couldn't move, literally from the pain of a simple little scrape. 

It took almost five minutes before I could regain my composure and my strength to move. It was shocking and confusing. 

Tweenty minutes after I regained my composure, I'm still in pain. Now it's only radiating from my right hip down to my calf. It also feels like someone hand is laying on my theigh right where I scrapped up my leg. 

Earlier today when I went outside to watch the kids to play the dog accidentally hit my leg with his head. I was in pain for hours. 

I know I'm new to this game called fibermyalgia but really should it be this bad? It baffles me really. Healthy one day and suddenly out of nowhere, BAM 💥 You spend the mojority of your days riddled with pain. 

Even more baffling is how a heating pad helps ease the pain yet on a hot day (like today) my body feels like pins and needles are sticking me all over my body. Why does one heat help and the other makes it worse. Baffling. 

Potty Dance

I never thought that at the age of 3 my son would still be in diapers. 

My daughter started potty training at the age of 1 1/2 and was fully potty trained by age 2. 

Obviously we couldn't start potty training Liam at the age of 1 1/2 because, for starters, he didn't walk until right before his 2nd birthday. He hasn't been able to communicate with us verbally until recently. We tried once before, this last spring, to potty train but Liam didn't understand it. 

Now it's clicked in his head what the potty is and what your supposed to do with it. 

Yesterday I happened to be in the bathroom using the potty (TMI) when Liam walked in. He asked me what I was doing so I told him. I saw this look in his eyes like something clicking together and so I asked him if he would like to use the potty. 

Liam got so excited. He clapped his hands and said "yay potty". And sure enough he used the potty! 

This was yesterday evening, right before his shower. After his shower I asked him if he'd like to use the potty again. And again he was excited. He had used the potty successfully twice before bedtime. 

Today I've kept asking him if he had to use the potty. He successfully used the potty 5 times before 1:30pm. One of those times he even went #2. (Again I know TMI)

Liam was rewarded with plenty of cheers and high fives. This last time he didn't want to stop playing but did without a fight and was rewarded with a sticker. Boy does he love his stickers. 

Today hasn't been accident free, and I didn't expect it to be. I also don't expect any of the days to follow to be accident free. In fact, he's still wearing diapers because he isn't going 100% in the toilet. In fact we've still had several full diapers. 

I feel like starting potty training and immediately changing him into undies would be too big of a change that he just can't handle or process right now. The last time I tried to potty train Liam I immediately put him in undies and that resulted in both of us being frustrated. Today hasn't been frustrating in the least. 

We've been celebrating his accomplishments in using the potty and I think that's going to be our key to success. Just letting him do it on his own time, but reminding him to go. I'm very proud of him and how well he's been doing so far. I don't expect this to be smooth sailing. What I do expect is many accidents and weeks of failing until he gets it down. My expectations aren't high, they're reasonable and reachable. 

A Day For Art

In an attempt to forget about my pain and the misery it's causing I've been hanging out with the kids. I watched them play outside on their playset. They took turns on the swing, climbed the ladder, played in the club house and slid down the slide. They played fetch with the dogs and laughed. It didn't distract from the pain but it did put a smile on my face. 

After showers for both kids, we decided to do some crafts. It was a great way to get out my crafty side since it's been dieing to get out. 

Since Halloween is right around the corner and fall is upon us, I decided some Seasonal crafts were the key. 

We started off with handprint spiders complete with webs. 

We decided Miss Lanie Bug's spider should be purple since it is her favorite color. I love how she choose to make it's eyes pink and green. 

Liam's handprint spider is blue with one black eye and one blue eye. Made with his handprints. He has no interest in decorating it after i put ink in his hands. He decided he was done after that. We're still dealing with some sensory issues there but it's slowly getting better. 

After the spiders Lanie wanted to make scarecrow people out of Popsicle sticks. Lanie and I made one to represent her and one for Liam. 

Lanie wanted hers to have braids and a hair bow. We used felt for the hair. Then I made a hair bow out of the ribbon she choose. She then decorated it with googalie eyes and drew a dress. She said that her scarecrow is picking berries. Since scarecrows are meant to scare off crows she drew crows flying above. 

I got creative when making Liam's scarecrow. I wanted it to wear a hat but thought it would be neat for the hat to be patchwork. Lanie choose the buttons for it's eyes and smile. She also decorated the picture with crows, a sun and decided to go with a stick figure body and big ears. 

I decided to end today's arts and crafts time by making a few hair bows. 

I love these black and white hair bows. Lanie loves them too. She said they were perfect for the fall season. 

I loved spending time with my babies making things. Now I have some pretty artwork to hang. 

It wasn't the ideal day having pain shadowing me but I worked past it and put a smile on my face...as we sat on the bed, me on a heating pad. 

It's moments like these that get you through all the seriously craptastic times. 

A Royal Flush

The girl/woman in this picture seems so happy. She seems so carefree. Sure there's circles under her eyes from lack of sleep but she's happy. She's got it all figured out and her life is getting better after years of hell. 

Little did she know within a few short weeks of this pic being taken that her life would get worse again. That her health would decline and people would start thinking she was a hypochondriac and a liar. 

The happy girl is/was me. Happy days aren't as often. I don't know if the worst part is the chronic pain or he fact that no one believes me. Even with a medical diagnosis no one believes. 

"It's all in your head"

"Your making it up"

"Are you addicted to pain meds?"

No it's not all in my head but more like all in the nerves. The nerves in my body are over active causing my brain to register it as pain. 

I'm not making it up, although I wish I was because then I could shut it off. It's hurtful to be riddled in pain and have someone not believe you. It's the reason I've been in pain for years without doing anything about it. The support system I need just isn't there. Which is all fine and dandy because when I am in pain I'd rather be left alone. 

When I go into urgent care, emergency room or to see a new doctor I feel like they think I'm just seeking meds. In reality I'd rather not have to take them. They're harsh on the body and make me sick to my stomach. I hate how they make me feel foggy. My last doctor was great and listened to me. I explained to him any meds I had to be on could not interfere with me being able to wake up through out the night and couldn't make me so drowsy I'd pass out. 

At first I said no pain meds. I stuck with over the counter ibproffen. When that didn't help we did prescription strength ibproffen. After we tried Vicodin. Finally we settled on tramadol because it's non narcotic. He wrote the script for twice daily (every 12hrs) but 90% of the time I only take it at night. 

I'm sharing this because well I need to get it out somewhere. I HATE meds. I HATE taking them. Unfortunately they are just another aspect of fibermyalgia. 

There's nothing I can do to make people believe. I don't have the strength it would take to even attempt to make them see and what's the point anyway? I know what's wrong with me. The doctors know. Does it really matter if anyone else does? The way I see it I can either use the energy to unsuccessfully make other see or I can use the energy to get out of bed and attempt to enjoy my children even when in pain. I think the ladder option is my choice. 

For now I'll do what I've always done. Suffer in silence and blog about it. Someone out there will one day read this, someone whose going through the same thing, and will reach out to me. That's how support systems are built, by putting yourself out there to be heard (or read as it may be). 

Until the pain ends for good I will sit here and pray for God to deal me a better hand in this poker game of life. 

In a game of cards a royal flush is what you want to win. But in life it's the complete opposite. 

Finding Support

          In the midst of a fibermyalgia flare up I feel lost, not in control of my body. The pain is so intense all I can feel and think about is the pain. Nothing feels good. The slightest feather light touch causes pain. Forget about covering up with a blanket. There is no comfort zone. No way to relieve the pain.

          Today is day 5 of this flare up. I though I was only on day 4 but lost a day of my memory. That's another problem with fibromyalgia. Your brain feels like it's in a fog. You loose your memory. At times I can't remember where I set my phone or keys when only seconds earlier they were in my hand. I lock the door and by the time I get to my car I can't remember if I locked the door or not.

          I have constant headaches. They never go away just change in intensity. At this point in my typing up this post I am hurting so bad I want to give up. Just erase it and forget about it. Nothing I do during a flare up is pain free.

          Today has made me realize that I need a support group. My husband understands that I hurt. It scares him. But he doesn't understand the intensity of the pain. He doesn't understand what I feel. He doesn't understand that when he comes into the bedroom and lays across my legs in an attempt for physical contact that it's not comforting me. It's causing pain. This morning he did so and I ended up in tears crying for half an hour until the tramadol could kick in to skim just the top layer of pain away and stop the tears.

          I need to connect with people who understand what this feels like. People that can virtually pat the on the back and say it'll pass. That things will get better. Flare ups don't stay.

          Most of all, I needed to share my story. Blog about how I'm feeling. All in hopes of remembering in case I forgot and the doctors needed to know. But more importantly I needed to spread awareness and reach out to my readers in hopes to connect with others going through this same thing. It's a lonely journey. I've had symptoms for years but was just diagnosed a few months ago.

          Back in December I had a huge flare up. I could hardly walk. The doctor I was seeing at the time came to the conclusion (with my help) that what I had was Aspertame poisoning. Then in April/May when I had another flare up, I saw a new doctor. Went through physical therapy. x-ray's, and blood work and at the end he decided to diagnose me with fibermyalgia. That was after he tried me on Gabbapentin. Gabbapentin caused my already over talkative nerves to talk even more creating even more pain. Like electricity. I stopped the Gabbapentin and the pain went back to what it was before. Still very painful, but not so many electric shocks.

          Right now I'm on Ampetripiline, tramadol and flexeril. I personally don't like meds. I won't take them unless I absolutely have too. I take the tramadol at bedtime and only in the mornings if I have too. I hate having a condition that forces me to take heavy duty pain meds. But what I hate even worse is being in so much pain I can't be there for my kids. I can't play and laugh with them because it causes even more pain.

          I feel lost and alone in this. All I can do is keep faith that it will soon pass. That flare ups will start being far and few apart.

When the pain gets too much

Everything hurts. Every feather light brush  causes pain shooting through my body. 

My feet to my knees feels like pens and needles. My hands to my elbows the same. The too of my feet feel like a rug burn. 

My hips are sore with shooting pains. I can't lay on my side. 

My spin feels like it's on fire. My neck and shoulders are tender. My elbows throb. 

Migrain. 

Shooting pain in the middle of my back. 

A light blanket across my body causes everything to hurt. 

I lay here crying because of pain. Because there's nothing I can do about it. This is my life. My life with fibermyalgia. 

I'm missing out on so much with my family. The kids are in the living room laughing and enjoying life as I sit here crying. 

The only time I'm getting with them lately is when they come into my bedroom and sit on the bed with me. It's not fair to them. They should never see me like this. Ever. How am I supposed to take care of them like this? I still do Liam's medical care. I force myself out of bed to do his feeds, breathing treatments and meds. 

I force myself to make sure they've eaten, have clean clothes and everything they need. Sure I could stay here in bed and just let justin do it all but that would make it worse emotionally for me. 

Today, right now I can't move. My body and mind are exhausted. Keeping my eyes open and awake is difficult. 

I just want to be better. No more pain. All I can do to get through it is tell myself the pain won't stay. It'll pass and things will get better. 

School Days

Liam loves school. Every school day we show up early. It's part of the routine and routine is important. That and I don't do it purposely. Lanie has to be dropped off first then we drive across town to Liam's school. Today he only had to wait 5 minutes before being able to go into class. 

Are you ready for Liam? Cause he's ready for you!!

School days put Liam in such a happy mood in the mornings. And doesn't he look adorable in that popeye shirt?! Ironic I know since he's a skinny boy but that's probably why I like it. 

At pickup I snuck into the room so I could watch him interact with the other kids and teachers. 

Today they were singing a song about a whale. Last wensday it was circles. (There are other kids there but I cropped the picture where they wouldn't be seen)

Liam loves music time. Today he seemed a bit tired even during this time. 

Liam made some art work today. It's so exciting to finally have art work come home from him to hang. 

Wensday they worked on hands, counting fingers. 

This came home today but was worked on wensday. 

Today they focuses on feet and counting toes. 

Try actually traced Liam's shoes to make these. Even thought this is his shoe size his feet are much smaller. His shoes just have to be big to accommodate the braces. 

I love having art work to show off. 

After getting home Liam spent some quiet time playing in his room. I had just changed his bedding this morning. 

Have I ever mentioned what a lucky little boy Liam is? For his birthday he received not one but two Thomas the train blankets. Liam loves Thomas the train so when I changed his bedding this morning and took the last Thomas blanket off his bed I decided to put another one on. This made him very happy when he came home. 

Liam would carry both blankets around the house every day if he could but he's been good and settled on snuggling with them in his bed. 

We've been so blessed that Liam has come so far. We know it could have been way worse than it was. We love our monkey boy. 

Struggling With Over Stimulation

          I spent many nights worrying over Liam going to school. There were many reasons and fears running through my head:

He's too young.

I didn't get enough time at home with him.

What if he freaks out being left there.

What if he catches a virus.

What if his Gtube got pulled out.

What if he shut down due to over stimulation.

          Liam started coming home over stimulated last week. He was fine during class but as soon as I picked him up, he begun to shut down.

          Today was no exception. He saw me and at first wasn't ready to go. He wanted to finish singing the song about circles. Of course I wasn't in a hurry so I patiently waited for him to be ready. When he was he walked up to me then immediately shut down. His eyes glossed over and he got a blank stare on his face. At this point he refused to make eye contact with anyone. 

          He wouldn't say good bye. Wouldn't wave. Wouldn't acknowledge anyone or anything.

          He cried the whole way home this afternoon. Luckily we live 5 minutes from his school. Once home he wasn't much better. I had to resort to tactics I used when he was a baby. I laid him on my bed, pitch black, no lights, no noise. After 45 minutes in the dark and a bolus feed, he finally calmed down. 

          I hated to see him like this. At that moment I wanted to show his teachers what happens every day after school. How he shuts down. They had just stated how he was ready for a traditional preschool. He can't hardly handle two days a week with a day to between the two, there's no way he can handle five days a week. 

          Today one of his teachers told me that it got pretty loud during one of the activities they were doing and that Liam stuck his fingers in his ears and told them "too loud". I am very proud of him that he is able to communicate verbally and tell us how he feels and what he wants. He's come so far.

          I wish he could handle stimulation better. I wish I had a way to help him process better. Baby steps. Slow and steady wins the race. 

*note: there will be no pictures of the meltdowns and shutdowns caused by over stimulation. It's too heart breaking and personal to share. 

Discovering Life's Secrets

Today is a ya like so many others. We wake up, get ready for school and drop the kids off. 

There's beauty in daily routines. Taking time to open your eyes and really see things can be a task. We tend to keep our eyes shut to the beauty that surrounds us. 

Not this morning. Our eyes were open and our brains ready to discover new things. 

Things as simple as daddy carrying His son to the car, both all smiles and exchanging pleasantries. 

"Are you ready for school today Liam" daddy asked. 

"Yay school!" Liam replied excitedly. 

"Have a good day at school son ok" daddy said. 

"Ok" Liam replied. 

While waiting for school to start Liam gets antsy band impatient. He loves school and can't wait for the day to begin. Because of this I have to apply distraction tactics. 

After changing his diaper for the second time this morning, I let him sit on my lap and pretend to drive the car. Liam loves cars. He even put his hand on the shifter (I have a stick shift. I prefer standard over an automatic). 

When we got out of the car we balanced on the parking block. Something we do every school day. Liam however decided he was done with this. It was just too boring for him this morning so he sat down and pouted a bit. 

Little Lamb was ready to start the school day. 

As he looked down at the ground he saw little ants scurrying off. 

"Bug mom bug" he pointed excitedly as he crouched down to get a better view. 

We spent the rest of the wait finding the "bug"'s. 

I could have jumped with joy. This was a momentous occasion, a moment I had been waiting for forever. A "normal" boy moment. 

The only "bug" Lanie would ever get excited about were ladybugs and butterflies. 

Proof Liam was all boy through and through. I'm not a fan of bugs myself but I was so excited to see him discovering these teany tiny little ants. I crouched down with him pointed out ones he didn't notice. We spent a good 10 minutes searching for bugs and laughing at how some were really fast and other not so fast. 

Soon his classmates started to show up. One little girl with her mommy and two siblings. As I watched the interaction between Liam, his classmate and her brother and sister, I realized something. These kids he will spend the entire year learning with are not just classmates but his first real friends. 

These are the people he is learning to build relationships with on his own. These kids are helping him (as he is helping them) gain skills that will help them their entire lives. These are not just random kids. They are friends. 

The interactions are amazing. They are teaching Liam to talk clearly. Liam loves to talk. They had a full on conversation this morning and all I could do is sit back and watch in awe. 

I pray for more morning like this. Being able to watch Liam grow and interact with others and discover new things is a blessing. Moments I will treasure forever and can look back and smile on them. 

This is the begining of a bright future.