Coming Home

Dear Little Lamb,

Yesterday we brought your ashes home. It was so hard. I cried and cried. Although it's hard not having you running around laughing, it feels good (or just better) to have you safely home and done with that leg of this terrible journey. 

It's still so hard to be home where your not anymore. I look at your bed every morning hoping to see you asleep and that this has all been such a huge nightmare. But every morning it's empty. No little voice saying "morning mom. I have school today?" 

I didn't realize before you went to heaven, how much time I really spent caring for you. How much time I spent holding you. I haven't had this much time on my hands since before you were born. I haven't sat here for so long since before you were born. 

I don't know what to do with myself. I'm in such a fog. One minute I think I'm ok and the next, I'm crying and feeling so absolutely broken. 

I'm trying to hold it together sweet boy. I'm trying to stay strong for you and for Lanie and your daddy like I always do. I don't know any other way. I just bottle it all up and I can't seem to stop that from happening. I'm trying so hard to stay strong and trust in God. I think about how strong and brave you are and I'm trying to do the same. I'm just so confused. 

Wanting you and needing you isn't getting any better. I cuddle with your stuffed animals because they still smell like you. I can't stop thinking about you. 

(1 year ago today) 

Dear Sweet Little Liam

Dear sweet little Liam,

My little lamb,

You had us all fooled. 

You always had a million watt smile on your face that covered up that fact that you were actually a sick little boy. This last year you seemed to be doing so well without hospital admittances that we became blind. The feeding tube and feeding problems weren't new to us so we didn't question it when you couldn't tolerate your feed that night. You had chronic lung disease, asthma and sleep apnea so we didn't question it if you required oxygen for a day or two. You had so many qwercks that we were so used to that we didn't think anything of them. To us you were just our little boy. 

You were so brave and you never complained. 

I'm still trying to wrap my brain around what happened. How could you be gone? How can I live without you? How could you be smiling and laughing and running around one day and the next be gone? 

My heart hurts so much. It's like I got stabbed. Then it's like it got mended only to have the stitched tear and the wound open up all over again. There's so much emotion that I can't even process. I cried so much those first few days that's I feel like my tear ducts are dried out. The emotion stays and threats to over take me. I know my brain is trying its best to protect me from further hurt. I think about you constantly. I still cry. I dream about you at night when I get to sleep. I wish I could hold you and kiss you and tell how much I love you. 

I know your in heaven and for the first time, your healthy. Your running around without coughing. You don't need a feeding tube anymore. Your perfect. I always thought you were perfect though. My little boy. 

Tears I've been holding in, trying to be strong for everyone else just over came me. You were the reason I was string sweet boy. I had to be for you. I don't know how to do anything anymore but take care of you. That's all I did your entire life. I don't even know who I am anymore. 

I feel so lost and without a purpose now. I don't know what to do. 

I have to start  making phone calls tomorrow to inform specialist doctors of your passing and cancel any upcoming appointments. I have to call home care and have them come pick up your equipment. I have to donate all your medical supplies and formula so they can help other families out. I have to go through your things and decide what's important to keep and what's not. Problem is, looking around, everything is important. I want it all. I want you. 

We still have to bring you home. Your ashes aren't ready for us yet. They don't know why state gave them such a problem or why they had to wait for the permit so long but it finally went through and we should get to pick you up Monday or Tuesday. It's going to be so hard. Make it even more real. 

But I don't want it to be real. I still expect you to come running through the house. I can still hear your foot steps. I can still hear your laugh. I can still hear the beeping of your machines. 

The worst part of PTSD is reliving this over and over again. It's so real. I thought reliving your birth and NICU was horrible but that has nothing on reliving your death. Watching them do CPR. Watching them do everything they could for you, then seeing the doctor announce time of death with tears in his eyes. Seeing everyone in and outside the room start crying for you. Me telling you to come back over and over again, but you never did. 

I keep blaming myself. Thinking there had to of been some way I could have saved you. But there wasn't. I did everything in my power for you. That's what hurts even more. Not being able to save you. 

When I was praying and asking God to heal you, this wasn't what I imagined. Though you are healed now precious boy. And you have eternal life in heaven. I will see you again sweet boy, whe God says it's time. Forever you will be in my heart. 

Love you little lamb. 

-mommy 

The loss

Tuesday was a nightmare. We're still in shock. On Tuesday December 15,2015 we suddenly lost our son Liam. He was fine, the suddenly not. The doctors are saying they believe he caught a virus that caused an infection and the infection caused a pulmonary embolism. The blood clot from the lung traveled to the corotid artery, stopping the flow of blood from his heart to his brain. They say it couldn't be predicted. 

The ER doc and staff went above and beyond the call of duty to try and save him. 

Two weeks ago Liam got sick. He developed a small cough and a fever. After 3 days was perfectly fine except the cough never went away. It only got worse. Monday morning be woke up with another fever and the cough worse. I took him to urgent care for X-rays to make sure he wasn't developing pneumonia, like I always do. We have protocol in place for a reason. Liam was very active and the doctor said his lungs were clear so the doctor didn't want to do X-rays. So we went home with instructions to return if he got worse and then they'd do X-rays. 

We went home. Liam played and acted relatively normal. He ended up taking a nap, something he rarely did but I knew he wasn't feeling well so it wasn't a big deal. At 7pm he crawled up into bed where I was relaxing and asked for cuddles. We layer there, me holding him as he fell asleep. After he was fast asleep, I put him in his bed.p, hooked him up to his pulse ox and feeding pump. 

At 10pm, he stopped tolerating his feed and de-sating. After hooking him up to 1 litter of oxygen he was fine. It's not unusual for Liam to require oxygen at random because of his asthma, chronic lung disease and sleep apnea. His temp had risen to 103.4. Still it was a long night. He kept waking up every hour or two wrenching and vomiting up stomach acid. I couldn't get his fever to go away. 

At 8:30am on Tuesday the 15th, I got Liam and I around to head back to urgent care. Liam was so exhausted. As we were sitting in the waiting room, me holding him, I looked down to see him a little pale. I looked up and maybe a minute later looked back down at him and his mask had fallen off. His lips were slightly dis colored. Paler than normal. I looked down again a few minutes later and his ears were suddenly blue. I pulled his mask down and so were his lips. I immediately grabbed his hands and his fingers were blue. I turned his oxygen up to 2 liters and as I went to stand the nurse called him back to take his vitals. I got in the room as fast as I could, explained the situation and how he was changing color. Liam was still awake and able to talk. She tried to get a good read on the pulse ox but couldn't get a good read on his heart so couldn't trust the oxygenation.

We rushed to an exam room and they immediately called for an ambulance to transfer him to the hospital. They started a breathing treatment while we waited but with 5 minutes the amublance was there. One of the EMTs thought he'd scold me, telling me that I should never take a kid with such medical to urgent care that you always take them to ER. We have protocol for a reason so I was pissed that he was wasting time and telling me how to do my job as his mother and care taker. 

I followed the ambulance to ER where I found Liam sitting up on the gourney waiting for a room. He looked pitiful s he said "mama". We got him into a room then the nurses tried their first attempts at getting an IV into his right arm  it failed. They took X-rays and EKG with portable machines then tried again for an IV in his left hand. Liam never fought it because he was so tired. It was like he couldn't feel it. I stood there holding his other hand and rubbing his head, talking to him. He looked at me and looked more tired than I had ever seen him. It's like the light wasn't really there anymore. He said "on my I tired. I sleep". I kissed his cheek and told him "I know baby I know. Just close your eyes and sleep. It'll all be over soon". 

Liam closed his little eyes. Next thing I know the nurses head peeked up at the Monitor. Her head shot back to be and asked if he was seizing. I looked down and watched as his eyes opened up, his pupils displayed and he began seizing. His tongue poked out and his little body shook. The nurse yelled for help and I jumped out of the way. Code blue was called and suddenly the room was full. Liam was intimated and bagged and chest compressions started. He had stopped breathing and his heart stopped. 

They tried for IVs but quickly realized the problem was that after years of IVs and blood draws, Liam's veins were just too scarred. They're last resort was a bone IV. They shocked his heart with the baby pads and got his heart working again but he wasn't breathing. I remember someone e approaching me saying he was a social worker for the hospital and asked about dad. Said I should call him and get him down there asap that it didn't look good. I was in shock but grabbed the phone and called Justin telling him to hurry. That Liam wasn't breathing and they had started cpr and it was serious. I called our pastor and told him to pray. Then texted my friend to tell her I needed her. 

When he started breathing it was irregular. The doctor got a portable ultrasound and started looking for a blood clot saying that could be the only thing that could cause him to go down hill so fast. He found what he thought was the blood clot and tried and tried to break it up. 

Our pastor was there in minutes and I remember I ran to him as soon as he rounded that corner. We prayed and prayed and prayed. Then Justin came and we prayed more. I sat there crying and begging God to heal my baby boy, that I needed him and don't take him. 

The room was so full of people. Probably around 20 working on Liam or those getting things for them. I remember turning my head seeing the hallway full of staff watching and praying. The doctor was upset and refused to give up. I remember him asking what time they started cpr and a nurse saying 11:11a. They tried all they could then he decided to try something more drastic. He wanted to use adult meds on Liam, something not usually done on a child and his only way to deliver it was through the bone IV which was unheard of. 

Liam's pulse was so weak. Before they got a chance to use the meds, Liam's heart completely stopped. With tears streaming down his face, the doctor called time of death. I didn't believe them. I said "noo!!" Then he looked at me and Justin started crying and I lost it. I remember hitting the wall and  wailing. Then running to Liam's side saying "no no no no please come back Liam. I need you baby. You can't leave me. No!i need you.... It's ok it's ok baby. I know. I love you so much. I understand. Mommy loves you". 

Everyone was saying they were sorry but I couldn't take my eyes off my baby. Then my friend Amanda was there, with her arms around me and the crying only got worse. I remember not wanting to see him like that, feeling like I just had to take everything off him. I carefully hooked the leads then tried taking all the lads off. They kept saying that they'd do it when they got the clear that they couldn't do it yet but my brain didn't hear them. Finally the one girl nurse that had been there the whole time since we got there placed her hand on mine. I looked at her as she told me they would do that. 

My baby was gone. I felt lost and broken. I still feel lost and broken. 

(More to come) 

Day 1 of Thankfulness

Often times in the midst of every day life, we forget to be thankful for the little things, or even the big things. I am guilty of this as are million of other people out there. 

With thanksgiving coming up this month, it's the perfect time to think about what your thankful for. Sit down and pick one thing each day. Today was a bit hard to narrow it down to just one thing, so I started going through my pictures and it hit me.

Today, I am thankful for my daughter Lanie. 

With everything going on with Liam over the years, Lanie doesn't get recognized as much as she deserves. She is my first born child (second pregnancy) and the daughter I always wanted. She's funny, smart, caring, loyal, creative and so much more. 

Last month she won student of the month in her class. All her teachers and the staff who work with her often tell me how kind and smart she is and how they enjoy having her in their class. She even has two teachers who wanted her for second grade and now one is bummed she didn't get Lanie lol. 

Lanie works hard in school, comes home and does her homework, chores and then computer homework since she goes to another class during computer time. She doesn't complain that she doesn't get to play a whole lot during the week. In fact she doesn't complain hardly at all. 

When Liam was in NICU after birth, Lanie keep up going. Kept us strong. She made us laugh when we needed it and hugged us when we needed it without us ever saying a word. She's always been very intuitive. 

She helps teach her brother Liam and care for him. She understand he needs more attention because of his medical needs and doesn't complain. Lanie is a trooper. She's stronger than any other little girl I have ever met and mature beyond her years. 

Lanies favorite color is purple. She loves Shopkins, Ever After High, Monster High and Barbie. She loves to read, ride her scooter and is a happy kid. I am so blessed to be her mom. 

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. 

Not Helpless

A parent should never feel helpless when it comes to taking care of their child. But as I sit here at 2:30 am after another one of Liam's coughing fits, that is exactly how I feel. And I'm reminded of all the other times when I could not help him but only sit at his side. 

That's when I remember what the nurses in NICU always told me:

 You are never helpless. Your doing exactly what your baby needs you to do by just being here, sitting by their side and holding their hand. That's not nothing. That's huge. Giving them comfort and love while they fight makes a difference in how they fight. Your doing the right thing. 

Thank you to all those nurses at UCSFs NICU who drilled this into my head because years down the road when I most needed it, there it was to comfort me. 

I will always say that this journey is never easy. It's road it full of potholes and detours. Some days you'll feel like there's nothing you can do but remember that just by being there, you're helping. No one can comfort your babies like you do. 

Us moms are always the hardest on ourselves. We feel like we have to carry the weight of the world on our shoulders and never ask for help. But one day that weight will crush you so find that one person you can be real with. That one person that will let you vent and will straight up tell you what they think or feel without any sugar coating. We need that. It makes the journey much harder without someone by your side. 

I've felt alone in this for all too long. I still do. But truth is I was too afraid to ask for help from those around me because I thought everyone around me expected me to handle it on my own. Truth was they just didn't know what I needed from them so they did nothing. Because of this I hold an unwarranted grudge against many including my husband and I'm having a hard time letting go of that anger. 

As I sit here and listen to my little lamb cough in his sleep, I thank God that we are home. And I thank God for reminding me that I'm not helpless and that I'm ding exactly what Liam needs me to do. Just be here.

X-rays and O2

Today we continued to fight this battle. Liam is steadily getting worse. I sent videos to our pediatrician of Liam breathing and he ordered X-rays. We we're worried he might have pneumonia based on the heavy labored breathing and the cough. 

(Liam waiting for his X-ray today)

X-ray showed no signs of pneumonia. Pedi thought his asthma and reactive airway disease was acting up. By this time Liam was already back on oxygen. He was considering putting Liam on oral steroids again. Depending on how he does tonight and tomorrow morning will determine if he has to take the steroids or not. 

Liam was on 1 litter of oxygen but after going to sleep he needed more support. He was breathing even heavier with his saturation dropping so I increased him to 1 1/2 litters. Liam is currently sleeping comfortably and hopefully will stay that way all night. We're both exhausted. 

Fighting An Uphill Battle

I sit here looking at my son, my little lamb who is fighting another virus and on oxygen and I think "why does it have to be so hard?" 

Today I took Liam and Lanie to urgent care. Lanie had a really bad sore throat and I needed to make sure she didn't have strep. I have Liam and I checked as well. We were all negative. They said it's probably he virus that's going around right now. 

When I hear someone say "oh it's just a cold" or "its no big deal just a small virus", I want to smack them upside the head on hopes to juggle the smarts loose and override the stupid. 

With a CDHer it's never "just a virus", "just a cold". 

It's "I'm struggling to breathe and can't keep feeds down and am rapidly loosing weight" thing. 

Today at urgent care I was scared to look at the scale. I didn't want the disappointment of seeing that he'd lost more weight. I am already seeing him all skin and bones. After seeing it in KG, I was too scared to ask the nurse to convert it to pounds for me. But I decided just now to do it. 

24 pounds and 4 ounces. My 4 year old son should be way bigger. He should weigh around 40 pounds. And his BMI should be 14-18% not 0%. 

It's been such a struggle. Every time we get somewhere with weight gain, he gets sick or stops tolerating feeds and looses it all. We have no room to budge or fudge or loose here. 

I'm not asking for things to be different. I'm praying for the strength and knowledge to help my son through this. I have to keep faith that we will get there. 

I've been so disappointed for so long that I work so hard and basically kill myself to hell Liam gain and it always falls flat. But I look at him and he will just smile at me with that million watt smile that melts your heart and I know that's his and Gods way of saying it'll work out. 

For now we just need prayers. Prayers that he gets over this soon. And throw in prayers for the many many CDH kids and babies fighting harder battles right now. Baby Emily who isn't looking too good. Jaime who is in the hospital because he has a bowel obstruction. And so many many more. 

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. 

Ten Flying Brooms Craft

Since it is rainy outside today I pulled out a Halloween craft idea I'd been planning to do with the kids. I found this book called "ten flying brooms" then while on Pinterest saw an awesome craft to go with it. 

So I dug out some Popsicle sticks, felt, and the hot glue gun. I drew out the pattern and the kids cut them out. We had a blast. After making these, I brought out the book. The kids were excited and loved it. 

Here's how we made our broomsticks. 

1) cut out 10 prices of felt that are similar to a square but flaired out at one end. 

 cut slits on the large end to make fridge. 

2) put some glue on the end of a Popsicle stick. I glued about 1/4 of the way up or less. Place the stick, glue down on the felt. Make sure glue is covered by felt. 

3) put more glue on the backside of the Popsicle stick then fold over one side of the felt. Hold until cooled. 

4) repeat step 3. And that it!

We numbered our sticks so Liam has to look for said number in the book. This helps him recognize his numbers. We're also thinking about making little witches so as we read along with the story we can have the broom find its witch just like the book. 

The kids sat there and continued to play and read after we read it the first time. This is such a fun activity. 

Stomping Puddles

We got a nice surprise today and woke up to rain. It sprinkled lightly then turned into a steady steam for a few hours. Living in California we don't see much rain and we know how precious every drop is. 

We could let the "storm" pass us by without putting on the brand new rain boots we just bought (since we keep hearing El Niño is on its way and bringing loads of rain). 

The kids were in awe of the wet stuff falling from the sky. 

And then it was time to jump in whatever puddle they could find, big or small. 

Poor Liam had trouble walking in his rain boots since they're heavier than his normal shoes and a bit bigger. But that didn't stop him. 

The kids, being California born and raised and never even seen snow, decided it was too cold and that they needed jackets. 

And an umbrella. 

Poor kiddos would freeze in the snow!! Lol. 

We had a blast playing in the rain. 

Picture Day and more

Friday was picture day at school. Or as my kids chanted excitedly "picture day picture day it's picture day yay" until I thought my ears would bleed or my head expload lol. They were so excited and it made for a fun morning dressing up, doing their hair and pretending to be a wild thing.

Yes pretending to be a wild thing because where would we be if Liam didn't sport his wild thing sweatshirt with hood up and walk around the house roaring at everyone. 

What a fun sweatshirt!!

Liam had so much fun that he refused to let me take the hood off so that I could do his hair. I had to take a brush to his school with me and fix his hair as they lined up to take pictures. 

He wouldn't even take it off to take a picture with sister. Neither seemed to mind since we're all used to the antics around here. Lanie wore a new outfit picked out just for pictures. She proudly sported her healed boots that I never let her wear. (See how she's trying to make it known in the picture lol)

The snags didn't end there though! I had forgotten to go by the bank to pull money out to pay for pictures so we had to leave early to do so. After getting to school I discovered that the picture envelopes were left at home and had to hunt down two more! Thankfully Mrs B, Lanie's teacher had extra!

Once the envelopes were filled out and stuffed with money, I sent Lanie off to class and returned to Liams since it was my scheduled volunteer day. It didn't take long before his classes lined up and left to take their pictures. 

After picture time the teachers lined them up on the tables on front of the class to take a big group picture. I was able to snap a few but can't post them due to safety reasons. 

I did snap this cute picture of Liam on the bench however. I really hope he smiled just like that for his picture because it's adorable!!

The class mascot was included in their group picture so of course we had to take a selfie with her. Her name is Franny and every morning she sings songs with the kids and they tell her good morning. Liam thought it was hilarious to cover my mouth up. 

Later Friday night I took the kids out to Bella's school carnival where they had a blast playing games. 

Lanie has a pretty good arm on her. She tried out the pitching booth and did great. 

We couldn't leave without a picture at the photo booth. 

We stopped off at the 4H booth to pet the bunnies. Liam kept telling us how soft the sweet bunny was. He had no interest in the baby goat though lol. Guess he had enough of goats at the fair!

We played King Kong ping pong many many.....MANY times. Liam loved watching the ball make its way down the board. 

Liam wouldn't let us leave without trying the water gun race game... Twice. He won the second time around. By this time Liam was true my exhausted but we still had tickets to use up. 

So we went back to he photo booth and took a picture with their cousin Steven. 

And this next will have you doing a double take if you know our little lamb. 

We had to at least try the cotton candy. Well truthfully I bought some cotton candy for myself and we sat on the grass to relax. Liam took one small taste then stole the whole thing from me!! He ate it!! And he loved it!!! We ended up going through 4 cotton candys throughout the night between the three of us. Liam ate at least 1 1/2 himself. 

This is HUGE!!! Finally little lamb is fighting through his oral aversion and trying new things and loving them!! 

Friday was exhausting. We didn't get home till almost 9pm. We didn't have much recouperating time before one of our favorite littles 7th birthday party. Little Jada (whom I like to call a sour patch kid) celebrated her birthday in style today with a frozen themed party that rocked it!! 

Her mom worked so hard to make it special and it was perfect. I am lucky I got to help a little with decorations and making frozen themed candy for the kids. 

I found the Wilton mold at Michaels and used the 40% off coupon then bought winco's melts. I went to a local cake shop for edible glue glitter dust for that extra wow factor. Pictured is the first batch which turned out with too much in some spots. The kids loved them though. 

Liam and Lanie enjoyed playing with their friends and seeing some they haven't in awhile. Liam are pretzels, chips, cake and had a blast hitting the piñata. 

After a long two days id say we could use some R&R. In all honestly it's been a long two weeks for me and I desperately need some R&R but it doesn't look like I'll get any anytime soon. 

I tend to end many of my post in a similar fashion but here it is...

This is what life is all about. Enjoying every moment and making it happy and fun. Not hospitals and pain and sickness. Thank you God for another great day with my babies. 

<3 <3 <3

Straw Houses

Today I got a call from Liams preschool that he was acting weird. After requiring oxygen last week, no one wanted to take the chance. I agree. 

They said he suddenly got quiet and became very clingy, just wanting to sit in Mrs B's lap. She said she didn't mind that at all but they wanted to make sure he was ok. 

Turns out Liam was fine. He said he had just missed me and was sad that I hadn't stayed today. 😳. Well who could be mad at that (this time anyway 😂). All joking aside, I get it. He missed me. He's got some anxiety about me not being around and some attachment disorder. It's to be expected after me being around 24-7 for his entire life (minus the 2 days after he was born when our local hospital wouldn't release me to follow him immediately). 

It's ok. We will get through this. So today they sent home the "art" project they were getting ready to do in class. They didn't want him to be behind in making his three little piggies book. Today was the straw house. 

Liam used the scissors all by himself to cut up yellow tissue paper to create the straw. Then he glues it onto the "house" which he cut out that morning with me. It's so awesome how he doesn't even realize how much he's learning while having fun. 

So here's our happy for today. Liam doing things that we weren't sure he's ever be able to do: using scissors, squeezing the glue bottle (with little help) and creating something awesome. When Liam was in NICU and things were grim, I remember thinking how sad id be if he never was able to make me pictures and how empty the feeling was in the bought of not being able to hang up his artwork. But he's surprised and overcome all expectations. You got this Liam! Keep it up buddy!! 

Being Prepaired

          If there's one thing I've learnt on this medial journey with Liam, and if there's only one piece of advice I could give those dealing with CDH in their lives, is to be prepared....

BE PREPAIRED. 

          I don't mean become a dooms day preper and hoard canned foods and bottles of water. (Although maybe one day that would come in handy). 

          Know your child's health, inside and out. Memorize the symptoms or actions that indicate your child can't breath or has reherniated (just examples). Don't rely on machines to tell you how your child is doing. Example:

          Liam shows signs of desatting or difficulty breathing long before the numbers on a pulse ox machine drops. 

          Today I volunteered in his preschool class and because of the horrible time he'd been having with his sinuses and gtube infection, I went packing inhalers, a stethoscope and oxygen. Thank God I did because as I sat there at the "breakfast" table with him and his friends, I watched as Liam suddenly got very quiet and the color drain from his face as his eyes glossed over. I scooped him up and took him into the little preschool office and hooked him up to oxygen.

          By then he had already started having some difficulty breathing. He felt better within 5 minutes. Within 10 minutes he was able to take 2 small bites of food and within 15 minutes started chatting with his friends again. By the end of school he was back to acting normal, minus his normal spunk and hyperness. 

          It wasn't until nearly 4pm however until we tried to go without oxygen. Well in normal Liam fashion, he ripped that cannula off and said he was all better. His spunk and hyperness returned two fold. It wasn't until bedtime, after he'd fallen asleep that I hooked him back up. His lite lungs were just working too hard and needed a rest. 

          This wouldn't be the first time being prepared has saved us from catastrophe. Knowing Liam inside and out has saved us as well. So many times I've rushed Liam to ER and caught pneumonia or rsv at the very early stages and it's saved him from getting sicker than he should have. 

          But today. I probably turned a few shades paler when I watched Liam suddenly change. The teacher nearest us, Mrs C, who had her back to us, said she heard Liam get quiet and knowing he's not normally like that, she turned and saw him get suddenly pale as well and knew something was wrong. Thankfully the teachers all stayed calm and acted like nothing was wrong. 

          Knowing that these teachers saw first hand how quickly Liam can go from great to bad in seconds and seeing the symptoms gives me comfort because they were able to tell me what they saw and now recognize when he will need to be put on oxygen again in case I'm not there. We created a little safety net plan in case this happens again. From now until the end of winter, oxygen will be take  to school daily in case this happens again because there's not enough time to run him to the nurses office and hook him up. 

          I feel confident that I can leave Liam in their care and not have to worry if they can take care of him. It's such a breathe of fresh air that I could cry. I've worried that this day would come and they'd refuse to let him stay unless I was there. But no. I watched as they navigated Liam and his oxygen tank to different centers without any problems. 

          After being put on oxygen, all the kids were curious as to what it was. They had me explain to the kids how Liam just had trouble breathing sometimes and needs extra help. One kid asked if it was the same as the astronauts used in space and then all the kids thought it was so cool how Liam was like an astronaut. I love how accepting children are of their differences. 

          Mrs M, the district special education teacher came to see Liam today and since I was there we had time to chat about her view points of Liam's progress and what I can do to help him achieve his goals. There wasn't much I wasn't already doing, which she was very happy to hear. We are now using a new app to trace the alphabet and this helps Liam with his fine motor skills, something he needs lots of help with. She was going to talk to the OT and see about getting him those services to help with his fine motor issues. But for now no other changes are being made. 

          Today was a good day and a win against CDH. Nothing will keep my baby boy down and we have a great team standing beside him to help him through it all. 

Our SanFransisco

          When you think of SanFrancisco you think the Golden Gate Bridge. The iconic red trolleys. Walking down Haight and Ashbury streets. Or maybe you think of Alcatraz where Al Capone, George "machine gun" Kelly and many other natorius criminals were improssoned. Maybe Fishermans Warf comes to mind where you can get fresh seafood and visit the wax museum. 

          I can tell you what the Golden Gate Bridge looks like from a distance but can better tell you what the Bay Bridge is like to cross during a heavy rain storm that all but flooded the bridge, while worrying and rushing to get to my son who had been flown to UCSF. 

          I walked Haighy and Ashbury streets a million times but it wasn't to sight see. The first time I went down them was to find the Goodwill to buy jeans that fit after weeks in NICU, 4 hours away from home and my own clothes after giving birth to my son. I walked them a million times after that to get from the Ronald McDonald house across town to the hospital every weekend to be at my sons side. 

          I can give you historic facts about Alcatraz I learnt in school or on the Internet. I can also tell you how we made plans to visit after Liams escape from NICU but never got the chance. 

          I can tell you that you can't visit SanFransisco without exploring Fishermans Warf but I can't tell you how it smells to walk along the shops and restraunts or how long it takes to explore the wax museum. 

          But I can tell you how the hospital smelled of soap and dissinfectant. I can tell you that at 7am there's a long wait for the elevators and an even longer ride up to the NICU on the 15th floor. How I stood in silence every day, squashed into a corner in the elevator trying not to let my claustrophobia get a grip on me just so I could be at my sons side. How I had to go down to the 7th floor at 11am everyday to reserve a bed in the mothers sleep room so I could get a few measley hours of broken sleep. 

          When I think of SanFransisco I think of the 6 blocks I had to walk with luggage in tow every week to the laundry mat to wash my clothes. How in the 48 days there, I never had a few moments of privacy to cry it out. And when I held Liam for the first time how nervous and scared I was and how he turned blue on me. How years later I still have problems holding someone's baby because I flash back. 

          SanFransisco was a tough city for us. The worst of times with Liam and CDH were there at UCSF. But it wasn't all bad. When I finally got to hold Liam a second time and he didn't turn blue on me but held my finger and looked up into my eyes until he fell asleep. And how my husband called from home as I was holding our son and I cried telling him how wonderful it was to finally have our little miracle in my arms and how I never wanted to let him go. 

          The first time we took a nap together was there in NICU. Once you got used to holding a baby attached to hundreds of tubes and wires it was easy to get comfortable and fall asleep. The first time I got to change his diaper I was so excited. Finally I got to do something all moms do with their kids. I didn't care that it was diaper duty. I grinned from ear to ear and had anyone nearby snap a picture for me. 

          Our first family picture was taken in NICU by one of Liam's nurses. That picture is still framed in our living room. And when Liam finally started needing clothes and toys, how happy I was to be able to run out and get whatever he needed that second it was requested. And when we were told he was going home and how happy and shocked everyone was. 

          That's my SanFransisco. All our good memories wouldn't even be possible without the amazing NICU staff. Our two primary nurses who didn't just look after Liam, but me too. Having our little boy survive what he went through is hugely due to their hard work, dedication and their love for our little boy. 

          And since its NICU nurse appreciation day, I want to thank these two lovely ladies, Cindy and Sue because without them we wouldn't have our sweet boy. Without then we wouldn't have been prepared or equipped to deal with his needs when we got home. Without them I wouldn't have survived NICU unshattered. 

          That's my SanFransisco. Full of misery and wonder and miracles. We owe it to ourselves to go back and take it by storm. To enjoy the sights and the tourist traps. And to thank our beautiful NICU team for saving Liams life. 

Nurse "Doctor" Sue (as Lanie called her)

Nurse Cindy

Learning To Thrive

(Image above is Liam chewing down on Mt Mikes Pizza)

Liam's first full week of school went great. There's been a lot of progress and discovery.

His physical therapist said he's doing worse than she remembered. That was upsetting. I work with Liam every day and I didn't think he was getting worse. I didn't see him get a whole lot better either. Two days ago the special education teacher called me. She had spent two hours with him in the class and said that his teacher was a perfect fit for him.

She also said that she thinks that Liam's low muscle tone is affecting his ability to use the

bathroom. The theory is that Liam can't control his urine flow and that he doesn't know when he's peeing. It makes perfect sense considering I've been working on potty training him for 2 years now. Now we're doing a timed training method where we have him sit on the potty every hour on the hour. It helps but it isn't accident free. I'm worried how Kindergarten is going to go if he's not potty trained. It's in his IEP that he's not potty trained but still.

(Liam flexing his muscles in his superman shirt)

Liam has always had texture issues. It's been a large problem his entire life. Finger painting

has been something he hated. Yesterday and today he finger painted and loved it! His teacher Mrs H taped off one of the carpet squares just for Liam so every day he knows exactly where he's supposed to sit and he gets really excited.

Every morning the class eats breakfast together. The teachers are working hard to get Liam

to drink milk. That helps me out because he needs the calories. He's been doing very good eating breakfast with his "friends". He still doesn't eat a lot but it's a start. We're also working on keeping his hands out of his mouth. We tried bracelet he could chew on but he just took it off, had it on the ground wrapped around his shoe so his teacher took it away. So no more bracelet for Liam. He just has to learn to control the stimulation without using his mouth.

Liam's speech has improved drastically. It's almost like he's a new kid. The speech

therapist hasn't even seen him yet but because speech is so ingrained into this school he's improving daily. He's using more complete sentences and talking clearly. Finally he's able to tell me what he wants, how he feels or even just about his day and I understand his without having to decode him. He still has times or days where his speech isn't very clear and that happens more when he's tired.

(Liam loves to get on stage and dance and sing along at church on Wednesday nights)

We were having problem with him tolerating his night feed, then he got better and worse again. This whole week Liam has handled his feed so much better. He's up to 105 mls per hour for as close to 12 hours as I can get him. Unfortunately he got into a coughing fit early this morning and I had to turn off his feed an hour earlier so he wouldn't vomit.

Every morning I wake up Liam at 6:45. He then sits on his potty in front of the tv and watched cartoons for 45 minutes to an hour like that in an attempt to empty his bladder. This helps. After he uses the potty he gets to pick something from the prize box that's full of little toys and stickers. This reinforces potty time for Liam and gets him excited to use it.

Liam and our kitten Ozzy have continued to bond. Liam and Ozzy continue to play chase everyday and Ozzy has taken to sleeping with Liam. Ozzy likes to sleep on Liams pillow and Liam likes to sleep with his feet on his pillow and his head at the foot of the bed. Its funny to see this.

All in all everything is going good. Liam is learning how to thrive finally. We still have a long road ahead of us in life but the story has to start somewhere.

Emotional Struggle

That moment at the end of a long day when you just have to throw in the towel, wave the white flag and admit defeat. 

Between stress and allergies, I feel like I've been hit by a Mac truck with a sinus cold on top of it. 

 Not only did I get the stress of what happened with Liam and preschool today  (click the link to read about it http://mommyconfessionalinmyshoes.blogspot.com/2015/08/liam-1st-and-2nd-day-of-preschool.html?m=1 ) but I found out that my daughters already large, 2nd grade class is getting new students from a they class on Monday. 1st graders making her class a 1st-2nd grade combo. 

Today has been a bad day for my anxiety making everything three times as emotional as it should be. By the end of the day I was almost begging for my PTSD to cause another episode of emotional numbness. It's something I've only ever told one person about. Something, until a few days ago, I didn't know what triggered. 

I found the following on a FB PTSD page: 

I found that I'm not the only one suffering with PTSD who has these episodes. Most the time I'm scared after they hit. And always afraid that another episode will hit.

I don't feel anything during these. Not anger. Not happiness. Not love. Just emptiness. A robot going through the motions. 

By the end of today I prayed for one of these episodes to hit. The over active emotions took a toll. Not just mentally and emotionally but physically. That's why I feel like I've been hit by a Mac truck. High emotions effect my fibromyalgia. 

Clearly the meds I'm currently taking to treat my depression and PTSD aren't enough. I need something for my anxiety. It saddens me that I can't just be a normal mom without all the pain, depression and PTSD. But I've learned that having all this has made me work harder at being a good mom. All that matters are my kids and taking care of them. 

That's what gets me out of bed every morning and what makes me work past the pain and misery. Because my kids are my happiness and I need my happiness

.