Behind The Scenes

Truth be told there are a lot of things leading to this post. On the Bobby Bones show this morning they were talking about how no one posts the gory details or the truth on social media. Everything is sugar coated. When you ask someone how they're doing the automatic response is "great thanks for asking" not "well shitty actually". I've tried to keep things real here and not sugar coat it, but I think I failed. 

I'm always trying to stay positive even when I don't feel positive. That's just how I am, who I am. So let's do some behind the scenes recon here and be real. 

"How are you doing?" Well pretty shitty actually. I'm super stressed. Liam's sick AGAIN. He was just sick last month. We narrowly avoided a hospital stay. It was pretty scary to watch him have problems breathing. Truthfully it brings back memories from the first time I held him and he turned blue on me. They had to call a code blue. I guess before then I never thought about why they call it a code blue and it pretty much freaked me out. I was scared to hold him for a long time and had so much anxiety over it. To say that that experience really messed me up would be to put it lightly. I have a hard time holding other people's babies because of this and when I do get the courage to, it's only for a minute or two before anxiety sets in. 

We're on our last option for home treatment right now. Oral steroids and another antibiotic. He's been on oxygen all week. Today is the first time in 3 days he's gone without it for lasted more than 5 minutes. It's scary. I'm on edge. Our bags are packed and ready to go in case it comes to that. If it wasn't for last nights storm, I would have been driving him to children's hospital. But this morning he's better. This storm has caused us to go without electricity twice in two days for long periods of time. Which is scary when you have a kid on oxygen and the concentrator needs electricity. So not only were we getting sudden pitch black darkness but a loud alarm screaming at us telling us there's no electricity going to his oxygen machine. Yea that 3am wake up call about gave us all a heart attack! It's a good thing we have oxygen tanks. 

I'm not a fan of repetitiveness or alarms to say the least. They raise my anxiety and caused flashbacks so I'm always jumping up the minute they go off to shut them off. I just can't deal with it. My morning wake up alarm is a song on my phone because I can't take alarms. I have freaked out and screamed at both his feeding pump and pulse ox. I've broken down crying in frustration and anger because no matter what I did he alarm would go off. 

On top of it all is Liam's fits today. Crying over everything. Crying for no apparent reason. Crying because he was told no. Crying because he wants the cartoons changed every 2 minutes. Crying because he wants me to make him a specific food then crying when I do because he no longer wants it. Crying because the kitten looked at him wrong. He wanted me to hold him then would use his elbows into my stomach (pretty sure accidentally). Then he'd try to put his fingers in my mouth (not accidentally). 

I would pull my hair out if stress wasn't already helping with that. I'm exhausted. Haven't slept more than 2 broken hours per night in the last week. The circles under my eyes tell the whole sordid "secret". Hiding them is no longer an option, nor do I have the energy to try. I'm drinking a pot of coffee every morning for the last two mornings then another mid day. My bones ache from the electrical storm we had. And my body is in a ton of pain. I haven't brushed my hair today. I barely brushed my teeth. I haven't eaten anything but Gordettos and fruit roll ups today. I'm in need of a shower. I might as well throw my makeup in the trash. And while I'm at it throw away any jeans or tight clothes. 

I feel worse than I look and I look pretty horrible lol. 

I'm wearing leggings and a tank top. Liam's chewing on everything that isn't nailed down... Oh wait scratch that. He's chewing on everything. 

And I wore these "sexy" spider Webb leggings to the bank (drive through) and dollar store this morning after dropping my daughter off at school. At least I was looking for Halloween decorations in my Halloween leggings. Well actually I was looking for colored pencils and got sucked into the Halloween section vortex and couldn't get out. The holiday sections in stores always suck me in. 

And do I care that I left my house looking like that? Not today. I do t care that I went out in those leggings and threw on a sweater or had messy hair and no make up. Why? I'm done caring what others think and could care less about pleasing anyone anymore. I too far gone now that I am unable to hide this walking yard sale any longer. 

I have two priorities:

My children's health

My children's happiness. 

Living with a chronic illness and having a child with a chronic illness goes beyond words. It's hard enough to take care of a child whose always sick. It's takes a lot of energy and patience. It trying to take care of a child with a chronic illness while living with one yourself is a whole new world. I have to fight harder to do what needs to be done. At the end of the day I'm too exhausted to eat  do anything but fall into bed once the kids are in bed. 

And I'm going to admit it, my house isn't spotless. One when you have two young kids running around making 2 messes for every 1 you cleaning seems nothing gets done. I have chronic fatigue as well as fibromyalgia so getting out of bed is difficult for me. Laundry gets back upset times thanks to a dryer that doesn't dry the first round. There's usually always some dishes in the sink. Toys cover the floor I every room because my 4 year olds mentality is that there HAS to be toys everywhere and he's playing with ALL of them, in every room, at the same time. SMH. 

There may be loads of laundry but there's loads of love in this home. We work together. We clean every day even though it looks messy again 10 minutes later. The kids may fight and torment each other but they love each other. I may want to run away from all the chaos and noise sometimes but I wouldn't trade this for anything. 

I knew being a mom and raising kids would be tough. I knew being a mom wasn't for everyone, after all look at my own mother. She didn't raise any of her 3 kids. He couldn't even handle being in her kids lives after they became adults. I knew that once I had kids I was in it for the long haul and I promised I'd never give up, or walk away. I expected sleepless nights, being thrown up on and pooped on. What I didn't expect was this life. I didn't know it could ever get this rough. I didn't know my baby could ever be sick I was expecting healthy happy children. Not one who had to fight for his life from the Minute he was born. 

I didn't expect CDH, chronic lung disease, feeding tubes of any of that her stuff I didn't expect to be exhausted and stressed all the time. I never expected I'd ever have my heart and soul shattered the way it did when Liam was born with CDH. But those were the cards God dealt me and I learned to adapt to the situation.  I learned to embrace it. Because if I hadn't I wouldn't have my little lamb. 

This is my life now. It's far from pretty and perfect. Things don't come wrapped in a bow. It can be gory and ugly at times. But this is my life and I'll defend it until the end. I was shattered but slowly am putting myself back together. It's not instant.  I can't just pop it in the microwave and it be done. Super glue won't hold. It's going to take slow steady careful stitches.

But this is my life and I love my kids for who they are not what I wish they were. 

How Fibro Changed Me

As I'm sitting here having a bad pain day and therefor a bad emotional day, I'm thinking about all the ways fibromyalgia has changed me. 

-I've lightened my load in my purse. I've even put away my favorite purse and use a much smaller one that barely fits my wallet, keys and phone. I just sang carry anymore than that because it's too painful. 

-I wear my clothes looser. All the clothes I've been buying are way looser. Some 2-3 sizes too big. Tight clothing feels restricting and causes a lot of pain.

-because of the pins and needles feeling and being hypersensitive I wear a lot of long sleeves, even when it's hot outside. 

- being touched causes pain. Even hugging. I still hug and cuddle my kids and push past my limits for them but it causes pain so intense I'm left crying and needing to be left alone. Because of this I hate being touched. I hate handshakes and someone in my personal space. The good thing about having a friend who understands this is that I know it's safe to be around her because she will never try to go in for a hug like some others. And she will never get her feelings hurt by the fact that we just don't hug. 

- my house isn't as clean as it used to be. I just can't keep up. Movement causes pain and pain causes exhaustion. I get very little done before I have to sit down or lay down. It sucks. 

- I have to take naps and frequent breaks to make it through the day. The problem with chronic fatigue is your always exhausted no matter how much you sleep. 

- you know how they have so many cute shoes that you would kill to wear? Heals, boots, name it? Well wearing them kills me. Heals are a huge NO NO! Walking is painful and any shoe that's not a flip flop makes it worse. 99% of the time I'm wearing flip flops. It takes to much energy to bend over and put on shoes that have to be tied or zipped so I wear what I can slip my feet into without having to bend over. Now that cool weather has hit and flip flops aren't feesable I don't have a choice but to wear enclosed shoes. Slip on boots with no laces and minimal effort are what I'm stuck with. On a decent day I may wear something else but chances are slim. 

-I don't have the energy to wear makeup or do my hair. I'm lucky to get into the shower and wash my hair. Makeup free with the sleep deprived bags under my eyes in plain sight and hair down or ponytail. 

- lifting my arms above my shoulders is almost impossible now so anything more Han a quick ponytail is a no no, not gonna happen. This includes reaching for things and lifting. 

-heavy lifting.. Hahaha yea right! I have problems picking up and carrying my 25 lbs son!! He walks and then I put him in a cart when we go somewhere. By the time I pick him up and place him in the cart I'm out of breathe and ready to go home. 

- I try to stay clear of social situations. I just can't function in them. Between the noises and being surrounded by people I just cant hack it. 

- I don't exercise anymore, ever. Unless I want to be stuck in bed for 2 weeks!

- I use to love to read. I read every night before bed. I can't even keep my eyes awake to do so anymore. Reading out loud to my kids is difficult because I have problems with slurring words and it's exhausting. 

- I don't like to talk on the phone or talk period. I'm that quiet person who hides in the corner when I take my kids to birthday parties. I don't talk on the phone a lot and when I do its only for a select few special people like my aunt and grams. 

- by the time I'm done cooking meals I don't have the energy to eat them. I have to rest before I can eat. This is most dinners. Other meals I microwave or skip (for myself anyway). 

- I'm constantly in pain so I'm grumpy most the time. It sucks honestly. 

- hobbies. Well I don't have the energy to do hardly any. Once in a blue moon but it's usually something with my kids.m, like my previous post. It's not fair that they should have to suffer as well. My online store is basically none exsistant because of this. 

- working is impossible. I can't stand for long periods of time. I can't be surrounded by all those people and I can't think because I'm always sleep deprived. 

These are only a few ways my life has changed these last few years. People tend to not understand when you tell them you have fibromyalgia. They just don't understand how it really changes you. I'll never be the same person I was before. 

Unanswered Prayers

          I recently sat down and talked with a good friend. I had something I needed to get off my chest but felt I couldn't tell someone. This was something that had been weighing on me for a little over a year and it seemed that for several days God kept reminding me. I didn't set out to tell her (my friend) but as we sat there talking my heart became heavy, my lungs didn't want to function and my brain screamed "let it out". So I did...

"I spent years bargaining with God over Liam.

First it was 'God don't let him die, take me instead'.

Later after he survived NICU and started having all his hospital stays and constant barage of problems the bargain became...

'Please God take away his pain. It's not fair that an innocent baby should suffer. Please take away his pain ad sickness and give it to me instead, anything to make my baby healthy and happy'

 I feel that after years of begging and trying to bargain for Liam to be healthy that God decided to answer my prayers.

Liam started getting healthier.

And I sicker. I feel that I can't ask God to take away my pain and suffering because I told him I would take Liam's place.

I felt this was my pennance and I would bear it and only ask for strength to endure this."

          I had never told anyone this because I felt I couldn't. I just couldnt say it out loud to anyone but myself. I didnt feel that anyone would take me seriously, not even my husband so I kept this secret of mine bottled up. Until it burst free from it's prison. My friend, whom is an answered prayer herself, didn't get frustrated with me as I rambled on almost senselessly. She didnt laugh or think I was crazy. What she did and said to me whas exactly what I needed.

          This friend is a woman of faith. We happen to attend the same church and share the same beliefs. She's not one to sugar coat things and put a fake smile on her face. When it comes to the important stuff, she's real. She's straight forward and isn't going to play games with you because in her words 'ain't nobody got time for that shit!'. I admire this highly about her. This is why talking to her is so easy. 

          After my ramble, she laid it all out on the table. She basically asked me if I knew how crazy I sounded. It wasn't asked in that  mean way some do, but she honestly needed me to hear how I sounded. She went as far as repeating what I had told her in a broken down form.  (The following is not word for word but the just of it)

You asked God to make Liam well and make you sick.

You asked God to make you sick and you think he did?

God doesn't do that.

          I then explained that I even though I realize, rationaly, God wouldn't bargain. He wouldn't trade one for another. He would make Liam better but forgo making me sick in return. But my brain wouldn't listen to that argument. I still felt that this was a penance that I couldn't ask to be taken away even if it was the devil seeing an opportunity to strike and doing so.

          Again she was so patient with me, my friend. She told me that she felt that after years and years of stress with Liam's health that my body just couldn't take it anymore. That it's tired and needs a rest and choose this time, when Liam is getting healthier to do so. Basically to thank God that my body didn't break sooner when Liam was really sick. Again this isn't word for word, just the just of the conversation.

          After she said this, it made complete sense. I just hadn't realized before that this was even an option. I hadn't realized just how tired by body and soul were from our CDH journey with Liam. She made me realize that yea, I can still tough it out and try to do more than my body wants to do right now and pay for it, but I should let it rest. Let my body and soul heal so that I can be me again. 

          I still have yet to ask and beg God to take this pain and fatigue and headached away. I have asked for strength more often and am trying to hadle this with grace and honestly. Explaining to my kids that I'm sick and that some days are better than others hasn't been easy but I'm being truthful with them. They need to know. As each day comes and on days I'm down, I explain what's happening. My daughter, who has the biggest heart ever and is gettin an award this Friday at school for her kindess and caring and helping of others (whoot whoot) tries to help me out. 

          She knows that it's very lonely and upsetting for me on days I'm in loads of pain so she always suggests things we can do together while I'm either stuck in bed or on the couch. We've played games, read books, colored, watched movies. She has a lap desk so when need be, she can get help on her homework without me having to get up and move too much. She is always asking me if I need a snack or something to drink. I hear 'it's ok momma, I can get that' and 'let me help you with that momma' from her more than I've ever heard any other kid say. 

          I remember a conversation I had with my good friend where I explained to her all that Lanie has had to go through with her brother being born with CDH. How she had her mommy ripped from her for almost a month, had to sit quietly in NICU every day all day and see her brother hooked to all kinds of tubes at 3 1/2 years old, how I spent 90% of the following 2 years away from her because of all Liam's hospita stays. I had voiced my concern about how I was afraid that this would scar her for life and that maybe I could have done things differently. But the truth was nothing could have changed. I was needed at Liam's side and hubby with Lanie at home tryng to give her the closest we could to a normal childhood. My friend had explained that this was teaching Lanie to be nuturing and careing and giving and that she could see this in her. She said that I could be very well shaping her future to be a nurse or a doctor and the same for Liam. 

          She reminded me that good always comes from bad. That I believe. So as the Garth Brooks song goes...

One of God'd greatest gifts is unanswered prayers

          All those years of praying to take Liam's place, God choose not to answer. He would indeed make Liam healthy, but he wouldn't make me sick. He knew I had another battle to forge and ensured that I had the strength to fight it and a good friend by my side to help me keep my faith.  

Mamas Got It Going On

But what she's got going on, we aren't 100% sure yet. 

Friday I go have an MRI of my brain done. They're checking for abnormalities, growths, anything that can help explain what's going on. I'm claustrophobic so in very nervous and scared for this test because I will be out into a machine that's dark, cold and reminds me of a coffin. 

It's making me face one of my fears straight on... To wake up and find myself buried alive in a coffen. 

I've been inside an MRI machine before (for my back) and they had to take me out before the test even started because I freaked out. My heart was racing, uncontrollable crying and shaking. It was illogical I know, but I couldn't control that feeling. And the loss of control make it that much worse on me. 

I have no choice but to go trough this test. I will be in the machine for an hour. In two week I will be returning to my neaurilogist for the results as well as an EMS test. It means they're going to stick needles in my arms and legs and to test nerve function. I know for a fact I have some but how bad I'm not sure. Every day I am figuring out that it's worse than I thought. 

I've already had my blood work done to check for heavy metal poisoning. Pretty scary thought to think that's a possibility as well. 

What I'm most scared of is that they won't find anything and won't be able to help me. This means I will have to continue to suffer. Constant pain. Headaches that never fully go away. Chronic fatigue. Loss of memory. I won't ever be able to go back to work because it's so hard on my body. I have days I can't hardly walk or stand at all. Days where I don't have the energy to talk or can't talk. Even insomnia filled nights. 

As far as my Fibromyalgia goes, I'm out of RX options. Either the meds don't work, they make the pain worse or make me violently ill. To my knowledge there are no other RX meds to treat Fibro that what I've already tried. So now in treating myself with essential oils. 

I was a skeptic. I didn't believe that EO's could help anything. I've known about them for years but laughed it off. But recently felt, after the last med change that made me violently ill, that EO's were my last resort. I couldn't say I tried everything if I didn't really try everything. 

So, feeling depressed and desperate for some help, I ordered my free kit from Simply Aroma. No I'm not trying to sell you anything. Just sharing what's going on right now. 

First thing I did after ordering my kit, was to order roller bottles. These are essential for what I needed the kit for to begin with. Once everything came in, I mixed up a headache remedy of Lavender, peppermint with fractioned coconut oil in a roller bottle for easy application. I roll it on my temples, forehead, base of the head, where ever the pain it hitting. 

I didn't expect any miracles. The "miracle headache" med (deemed so by my doc) had failed to do anything so I wasn't expecting this blend of EO's to help at all. 

Luckily, I got a small miracle. The blend eased my headache back down to something tollerable. No it didn't go away completely, but the headache was tollerable, it was almost none exsistant. The pain had lessened so much that I kept having those "wait a minute something's wrong. I'm not feeling pain" moments. When I stopped to concentrate I could still feel a small headache but it was finally something that could be pushed to the back of my mind. 

It wasn't a miracle cure but it helped. I had a good two weeks where I slept better and had more energy. But now I'm in the midst of a Fibro flair and I'm not sure there's much that can help those of that's even what's really going on. 

When a doctor diagnosis you with Fibromyalgia, it's because they can't find out what's causing your pain. Therefor anything they can't figure out gets the label. I'm not happy with the diagnosis. After all if I really had it, wouldn't one of the Fibro meds helped?! 

I'm having more symptoms of MS. Granted, I still have symptoms of lupus but with 2 positive and 3 negative ANA's they say that meds no Lupus.

If they don't find leisons on my brain then they say it's not MS. If it's not MS then there's no reason they can find as to why I have constant headaches, loss of muscle control in my hands and legs, memory loss, black outs and so on. My neighbor thinks I'm having seizures. The kind there I'm still functioning but can't remember spaces of time. Like how I got from one room to another. Or from point A to point B. 

I feel like I'm slowly dieing. Not like, eventually I'll die because everybody does but the actual, my body is shutting down and dieing. One day I just might not wake up kind of dieing. 

This is a scary life to live. I want so many things, simple things. No pain. Tea parties with my daughter. Racing cars with my son. Finger painting in the sun on a nice day. A day without mood swings that are uncontrollable. I want to have the energy to make things like I used too. To go out with my camera and just take pictures and be inspired. I want to be able to clean my house without it costing me days down on the couch. 

I keep praying that one day I'll wake up and all the pain will be gone. That I'll be healthy once again. Happy again. Able to loose weight. I keep telling myself that one day it'll happen. This isn't in my head. If it was, all the wishing and praying would have made it go away by now. If it was in my head I'd be instantly fine whenever I wanted to be and down when I didn't. The only reason I'm depressed is the pain. If there was no pain I would be my normal happy self. So when the doctor asks me if I'm depressed, I laugh at him and ask if he would be if he had constant pain. I'm logical enough to realize this and that helps me get through the bad. 

And even though I'm riddled in pain, and most likely will only continue to get worse until (if) they figure out the cause, I'm trying to stay positive. Trying to remember that there has to be an end to all this without there being an ends to life itself. I tell myself I'll get better. 

I may not know what's going on, but I know I have to keep my faith that God will help the doctors help me. There is a reason for everything and I have to trust that even though I don't understand now that it'll all work out. 

Getting Through Today

Life with Fibromyalgia, Degenerative Disk Disease, Chronic Fatigue Syndrome and whatever else is wrong with me is hard. Being in pain 24-7 with no relief makes doing normal chores hard. Just doing the dishes or vacuuming takes a huge tole on my body. After getting the vit B12 shot a few weeks ago, I have noticed an increase in energy. I am still in pain 
(I'm never pain free), but my energy level is up allowing me to actually get some chores done without feeling like my body was being put through a meat grinder. I have been taking full advantage of this increase in energy and getting as much done as I can every day. I listen to my body and take breaks and I admit I wish I had enough energy to do a deep clean through the entire house, but that's not the case. My kitchen has been staying clean everyday for the last 4 days. All the dishes are done by the end of each day. My counter tops stay cleaned off and disinfected, the floor swept daily. I was able to make a deeper clean in the kitchen as well as my bedroom. Oddly the colder it gets the better I feel. This is the first time in a year and 3 months that I've felt relatively normal. I thank God for the relief, even if it's small, it's still an improvement.

Halloween Magic

What happened to that mom?

That mom who decorated every holiday no matter how big or small it was?

This year she is gone.

Hiding some place refusing to come out.

I don't have the energy this year.

I so wish I did.

I want to get past this chronic fatigue and chronic pain,

hoping that decorating will make me feel better.

Is it even possible to feel better?

Is it even possible to push past this?

I have no clue.

I wish I could bring back that mom who got overzealous about all the holidays.

That mom that no matter what decorated.

That mom who always baked for every occasion.

That mom who was just so desperate for something normal that she made it happen.

What's changed?

Yes I have fibermyalgia,

but I know I've had it for some time.

It only got worse coming up on a year ago.

I want to dig through the decoration.

I want to scale the counters to hang things from the ceiling.

I want to stand on my tippie toes on the top of the step stool to hand fake spider webs.

I want to hang black gossimer in the windows,

black paper owls on the door,

glowing eyes in random places.

I want to stand back at the edge of the yard and admire my work,

knowing that all the kids in the neighborhood will point and laugh,

and be excited about Halloween.

Halloween is my favorite holiday.

You get to dress up and become anyone you want.

You get to scare and be scared just for laughs.

And most of all,

my husband proposed to me on Halloween.

At 2am.

When he didn't even know I LOVED Halloween.

It was meant to be right?!

And even though things have been difficult since Liam was born sick,

I still love him with all my heart.

Even when at times I feel it would be easier to leave him,

I still love him.

Love isn't easy.

Your supposed to work for it,

make it work.

Because otherwise it isn't true love.

So maybe that's why I am so saddened by the fact that I haven't decorated.

In my own way,

it's me celebrating the day he realized he loved me ad couldn't loose me.

Halloween is magical.

It's when everything we don't believe or shouldn't believe in comes alive.

It's the only time of the year where the taboo is not taboo.

Princesses find their princes.

Or happiness in HUGE bags of candy.

Ghost and witches fly around from door to door saying the magical words that get them candy,

trick or treat.

Everyone can be who they want to be.

For once they can have hope and see the "magic" of this world.

It's great fun seeing all the costumes.

Watching the kids fill their bags with candy then later gorge on it.

Fun Halloween games,

bobbing for apples,

haunted hay rides,

haunted forest.

Hogwarts come to life,

whole blocks turned into pirate ships.

Halloween is about discovering the magic.

I want to rekindle old memories.

I want to show my kids that there is magic out there.

I want to see their faces light up as the house transforms from just an ordinary home,

to something greater.

So can I get my body to cooperate?

Can I work past this?

I honestly don't know.

What I do know is that I want too.

Instead of sitting here feeling sorry for myself,

I'm going to get up and at least try.

I shouldn't give up before at least trying.

My kids need to know that even if you fail,

it's ok because at least you tried.

You don't give up before the game even starts.

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.