Trust in You

Hubby made a comment earlier.

He said that this last year has been the hardest year of his life.

He said "Trust in You" came on the radio the other day.

My brother in law,

nephew,

and husband,

all stopped working to listen to the lyrics.

They said even though they heard the song play in Liam's memorial video,

and on the radio a million times,

they never stopped to actually listen to it.

The song talks about how God is always with you.

How you ask God to give you miracles,

but it's not always how you wanted them,

or when you wanted them.

It's about always trusting in God,

no matter what hardships you face.

When I choose this song for Liam's memorial,

it felt right.

I was so broken and so lost.

Truth is that I still am broken.

I will always be broken.

I had two choices when Liam passed.

I  could be angry and deny God.

I could fight his every push.

I could turn away.

Or I could throw myself down at God's feet,

at His mercy,

and give him all of me.

I choose to throw myself at God's feet.

I choose to offer myself up to him.

I choose to follow God's path for me.

Why?

Because I wanted to trust His promise that my son was in heaven.

I needed to trust that my son was safe.

I needed to now that he was now forever loved and sheltered from pain,

thanks to God sending His son to die on the cross for us.

This past (almost) 10 months have been so painful.

I won't ever say that I don't miss my son to the point it's physically painful.

The very truth of the matter is that,

if it wasn't for God,

I wouldn't have made it through this last year.

That song got me through the toughest time in my life.

It reminded me that God was always there for us.

We haven't been thrown into a cruel world without protection.

We aren't navigating this world without a map.

He has seen everything.

He knows everyone's futures,

their paths.

"When You don’t move the mountains I’m needing You to move
When You don’t part the waters I wish I could walk through
When You don’t give the answers as I cry out to You
I will trust, I will trust, I will trust in You"

Listen to the song and watch Liam's memorial video by clicking here

October 2014

Blowing Dandelions

                                  

(Liam September 21st, 2015)

Dear Sweet Liam,

My little angel,

I don't understand this life without you.

Your pictures,

Your things,

And this hurt,

Are the only reason I know you really existed.

I go through each day like a zombie,

Never really living,

Just existing.

I'm trying to see the light in this storm.

It should me simple.

It is simple. 

You were hurting,

And now your not.

You lived a life of pain,

And now your suffering has ended.

I wanted so badly to believe that you were ok.

Every night I prayed for your health.

Lord please make each day better than the last.

Each day was better,

Even through the set backs.

It was better until it wasn't.

I know your suffering has ended.

I know your healthy and happy in heaven.

I wish I could see it.

I wish you were happy and healthy here.

Everyday I wake up and pray.

Lord please let me make it through today.

Throughout the day I pray.

Lord please let him be ok.

Lord please tell him I love him.

Lord please hug him for me.

A mother should never have to say these prayers.

I mother should never have to lose a child.

But here I am,

Where you are not.

Lost and broken inside.

Part of an exclusive club of heartbreak,

That should never exist.

If I could hold you,

I would.

If I could kiss you,

I would.

If I could whisper in your ear that I love you,

I would.

Instead I tell the butterflies.

I tell the sun each morning.

I blow dandelions and wish for you.

I love you sweet boy.

Until I get there,

Please hold that piece of my heart close.

(Image found on Google that I edited using PicsArt)

Sliding Emotions

Going to the park since Liam passed has been so hard. I avoid them like the plague. Or I did until it seemed life started pushing me back. We've been 3 times, and it was extremely hard every time. I have to try not to cry just driving by one. Especially the park next to the kids school because that was the last park Liam ever played at. Where we spent many days the last two months, hanging out and waiting for sister to get out of school. 

Those were some of the happiest days we had. Just running around like a healthy boy with no troubles in the world. The days seem to be some of the hardest times to remember because they were so filled with happiness, love, healing, without an ounce of owl edge of what was so come. To say I'm not sitting here crying as I write this, just thinking about those days, would be a lie. I am and I probably will cry for a long time to come. 

Liam changed everything. From the moment I found out I was pregnant with him, my world was turned upside down. You see, everything about Liam's life was a surprise. We hadn't planned to get pregnant for another year. It was a shock yet a welcomed surprise. Then when we found out he was a boy, the world couldn't have been more right. Of course the pregnancy didn't go smoothly but that's for another time. His birth was a surprise. We had a planned C section scheduled for two weeks from the day he came, but he wouldn't wait. He never waited for anything.

 Liam always had his own timeline an did things his own way. You could fight against his power force and struggle, or you could embrace it and accept him as he was. Acceptance wasn't easy at first I admit, but it didn't take long to realize that Liam was a force to be reckoned with and he wasn't changing. He was a fighter and I loved that about him. The biggest surprise of all was his passing. I could tell the story a million times and you'd never feel what I felt that day or even now. I stood there over my sons still body and looked up at my husband and asked the most heart broken question he will ever hear in his life. "What do we do now?" And he knew that I was irreverently broken and shuddered and that picking up those pieces would be impossible. 

But I'm getting off track. Since Liam's passing, I find parks are just a horrible reminder that have lost something so vital in my life. I see ghost memories of my son playing on the swings or sliding down the slide. I hear his sweet laugh ring in the air. And I'm broken all over again. It's gotten easier to hide the pain at times. I know the pain will never go away. I know that pain is there because I loved Liam so very much, with every fiber of my being. Every part of my soul. And I hurt as much as I love him. 

I read an article just before sitting here to write this, called Playgorunds and Cemetaries ( http://www.stillmothers.com/2016/06/13/playgrounds-and-cemeteries/ ). I'm the article she wondered if other parents were drawn to strange Cemetaries as she was after her daughter passed. Before reading this article, I didn't think anyone else felt this way. 

I've never been squirmish about Cemetaries as a teen I would pick flowers from our yard, ride my bike to the cemetery across town and lay flowers on headstones of those that seemed to be neglected I've the years. I'd walk through the child's section and I would feel the sadness that lingered from their parents grieving. I'd pray for these families that lost their babies and I'd hope to never have to feel that pain. You see when I feel something, I feel it deeply and completely. I always have. I didn't know until recently that it was because I suffered from PTSD since I was a small child (according to my therapist).

For awhile it's been weighing on my heart that I don't have a place to go visit my son. When he passed, I couldn't bear the thought of seeing his little body in a casket. I couldn't bear the thought of seeing him put in the ground. When he passed, I became certain of a few things. That I would live in pain and heartbreak until the day I die. And that I wanted him cremated and with me always. My husband felt the same. Now his urn sets on a shelf in the corner shelf system, surrounded by pictures and his toys. 

What I've learnt from this decision is that it leaves you with no place to go and grieve. No place to go and reflect. I feel drawn to walk through Cemetaries, leave flowers on the graves of babies gone too soon and say a prayer for those families. And I realized that it's because I have no set place to go do this for my son. That needs to change, and it will. That's my next project on the list of so many that needs to be done. 

49 Days Ago

7 weeks. 

49 days. 

Everything changed. 

That was the last time I held you. 

You looked at me with utter exhaustion in your eyes and you said "mommy I tired. I sleep"

"You sleep baby. Rest. It'll be ok. Mommies here. I love you. Just sleep" I told him. 

I didn't know those were the last words he'd ever say to me. Or that I'd ever say to him. 

"Sleep baby. Just sleep"

He didn't even have the energy to cry as he was being continuously poked as the ER staff tried to get an IV but failed over and over again. 

He closed his eyes. Then they opened minutes later and the seizure started. 

They lost his heart beat. He wasn't breathing. 

It was the scariest moment of my life but still I had faith because it wasn't the first time. 

I prayed so hard. 

"God please just help my baby. Heal his little body. Please Lord I need him" I prayed over and over again. 

They got his heart to beat again but it was so faint. They had to intubation him and bag him the entire time. 

For a bit he breathed on his own yet it was weak and they kept bagging. 

I didn't know as I sat there that I was watching my son die. 

He couldn't die. 

I needed him too much. 

But I watched as he slipped away. 

It feels like it just happened. 

I'm so angry. 

I'm so sad. 

I'm lost and broken. 

I don't know where to go from here. 

I don't know how long I can go on. 

No more "huggies" from my son. 

No more sloppy kisses from my little boy. 

No more "cuddled" from my little lamb. 

No more stories. No more baths. No more hot wheels and sore feet. No more of everything that I love about my baby boy. 

But for Liam,

No more medicine. No more hospitals. No more tube feeds. No more owies. No more pain. 

He's free from all the torture this world through at him. 

That should bring me comfort. 

In a way it brings a small bit of comfort but the pain is so intense that it makes no difference in my dark heart or broken soul. 

I miss my baby. 

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 

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. 

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. 

The Weak Link

There are times,

Days,

Moments,

When I wish my son understood the limits of his lungs. 

Why on some days he shouldn't be running,

Shouldn't laugh too much. 

Shouldn't be the hyper little boy that he is. 

And then I feel guilty. 

Guilty for telling him to stop running,

Laughing,

Playing like a healthy boy. 

So instead I stop myself. 

I let him be free,

If only for a little while.

I've had to learn to take things in stride.

But even then it's hard.

I try to cover up his sick lungs,

Implement story time,

Movie time. 

Snack time. 

I get down on the floor with him to play cars,

Blocks,

Trains,

Anything that requires a few minutes of sit down time.  

We do breathing treatments as needed. 

More on some days then others.

Lately it's been more.

He's only 3 year old. 

He shouldn't have limits on how much he can run,

Or play,

Or laugh.

He shouldn't get exhausted by eating,

Or drinking. 

But that's the nature of his lungs. 

The nature of the disease that plagues us every day. 

Chronic Lung Disease. 

Maybe it's been harder lately because he's had more flare ups. 

Two weeks worth of flare ups. 

It's hard on all of us to see him go through this.

We all know when it's time for a treatment. 

Me,

Hubby,

6 year old sister,

Even 3 year old Liam. 

Sometimes when the treatments are close together,

He will fight them. 

I don't blame him. 

So we try to make it fun. 

Read books,

Play with trains or cars,

Watch tv. 

I keep praying he will get better. 

Have less limits. 

I have to have faith that that will be the case. 

Ignorance is Not Bliss

Today is somber. Today a fellow CDHer is being laid to rest. Many others fighting for life. CDH families are left heartbroken, devastated and lost. Those with survivors feel guilty because their baby survived when so many others didn't. Parents of survivors are being judged because their child isn't "normal". I read a heartbreaking post which in simple form stated "ignorance is not bliss". I got to thinking. No it's not. It's hurtful. You may say something, thinking your helping when in turn your actually hurting. It happens daily. We just don't realize it. Having a little girl turn her head so you can't see her feeding tube and saying "now we can't see that thing on your face, and your pretty like a real dancer is supposed to be" (part of the article I read) isn't helping. Instead your breaking a heart. It's happened with Liam on many occasions. The other day a lady looked at Liam when he coughed and said "oh she's sick too. It seems all these babies are sick right now". I was furious. I had had enough. I was tired of judge mental people and I let my temper get away from me. I looked at her with a smile that wasn't really a smile and said "no, HE has chronic lung disease" in a sweet voice. I couldn't help it. Her and her husbands face dropped. She couldn't filter her response fast enough. She apologized and it seemed "sincere" until her, her husband and the little boy with them high tailed it away from us as fast as they could. It was like they were afraid they'd catch it from them like you would the flu. I could only shake my head. They had treated us as if I had said Liam had Ebola or some other highly contagious disease. You see, because these people didn't understand, because they were "ignorant", they were hurtful. It happens all the time. So please, don't judge the mom with a coughing kid whose out in public. Or the one whose checking her kid for a fever. Or one with a feeding tube. Or a kid on oxygen. Or a kid without hair or scars everywhere. You don't know the situation. These kids just want to be treated like every other "normal" kid. They don't want attention brought to their differences. And the parents don't need any more stress than they are already under going because taking a kid out with medical problems is stressful enough. We do it because our kids beg. They want to do "normal" things and we don't have the heart to continually break their hearts. ❤️❤️❤️ #cdhawareness #chroniclungdisease #thinkbeforeyouspeakoract

Social Butterfly

Today was a school day for our little lamb. Even though he's been going to school for 3 months, it's still so hard to believe. He's growing. He's relatively healthy, the healthiest he's been in his entire life and more importantly, he's happy. For the first time he has friends. Friends he made on his own, at school. He knows their names, and calls them by them. He says "hi" every school morning and "bye" to them at pickup. He comes home talking about them. He randomly talks about them all week long. I was worried our little lamb would have problems socializing, making friends and getting along with them. Turns out I had nothing to fear. He's a social butterfly, learning to get along with others, make healthy friendships and use his imagination to play with other kids his age. I am so proud of him. When I think back on a time I wanted to pull him out of preschool because it was just too much, I shutter. Because look at him. He's doing amazing. I am proud to be his mother. #cdhawareness 

Feeding Tolerance Issues and Infection

When it rains,

it pours.

It's not pouring yet but I can't help expecting it too.

This is life.

This is struggle.

This is how we survive.

For the third time now,

Liam hasn't tolerated the increase in feeds.

I've been trying to do this increase the GI wanted for weeks.

A little over a month I believe.

But he just can't handle it.

Two nights ago he vomited in his sleep.

I didn't know until morning.

I was scared.

He could have aspirated and died.

Thankfully he has a sat monitor.

All his levels were great so no alarms went off.

But still.

After talking to my husband about it,

we decided we just couldn't risk his health for the increase.

Something had to be sacrificed.

We couldn't really sacrifice the increase.

Yes he's growing and gaining weight,

but it's very slow and we need to bulk him up for winter.

Why?

Because he ALWAYS gets sick in winter.

When he gets sick he looses weight,

and that can be dangerous.

So to give him his best chance,

we decided we had to sacrifice daytime eating by mouth.

We had to increase his day bolus feeds from 1 a day to 4.

Basically every 2 hours starting at 11:30am,

he will get a 4oz bolus.

This means he will most likely eat less by mouth.

But he won't aspirate when he vomits at night,

because his night feed was lowered back down to what he does tolerate.

Yesterday was the first day of this change.

I was scared and worried his stomach wouldn't handle a bolus every 2 hours.

I was happily surprised that he tolerated the change perfectly.

He still even ate a little bit in between feeds.

I tried really hard to find the bright side in this.

I was upset because I felt all the progress we made in eating,

would be lost.

I felt we'd have to start all over again.

I felt desperate and lost.

It was hard and tiring to get where we are today,

even though he doesn't each much,

it's still more than he's ever eaten.

I had thought I could see the end to tube feeds in our future.

But now I felt like there wasn't a future that didn't include a tube.

It took lots of deep breaths and searching to find the bright side.

But I did.

Even if this new regiment last's for months,

through winter,

it just may help us.

His stomach will get used to having food,

large amounts of it,

so when we decide to get rid of those feeds,

he just might eat more.

That's what I'm telling myself anyway.

Sure it didn't work the last time we tried,

but he was really young and didn't like things in his mouth.

Now he knows what food is and likes it.

I am grasping onto this concept,

this idea that it could all work out.

It's my lifesaver in this stormy sea.

On top of the tolerance issue,

Liam has a Gtube infection.

The stoma is pretty bad.

This is one of the worst infections I've seen yet.

We will get it to go away though.

We always do.

Because that's what we do,

we overcome,

we survive.

That's the only life we know now.

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. 

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. 

TBT July 24 2011

#tbt #timehop wow 3 years ago Liam was in the NICU and I was so excited that I got to change his diaper for the first time on my own. It was also the mark of when I healed enough from the csection that I could put on jeans and wear real clothes. I was 4 1/2 hours from home in a city I knew little to nothing about. It was a Saturday when justin, Lanie and my mother in law came to visit. We took off walking in hopes of finding a store with reasonable prices clothes since all I had were sweat pants that started falling off me. We walked down Haight street just looking. We were about to give up when we ran right into the GoodWill, only it didn't look like any GoodWill we'd ever seen but a nice shop. That day I scored a few pairs of jeans and some tops and sweatshirt. We also scored a few books for me to read to Liam.

So why is this relevant to our CDH Journey?

From the very minute I found out I was pregnant with Liam I had to overcome situations, fears. When Liam was born sick so many things were thrown at me. I had to overcome my fear that he wouldn't make it and have absolute faith that he would. Yes there were moments when I had my doubts but I'd push those aside and think of the good. I had to overcome my fear of being alone in a city I knew little to nothing about to survive. I had to break through my shy quietness and stand up for my rights and my sons rights. 

If I was going to survive on my own I had to figure out how. If I was going live this new life and make the most of it I had to learn. I had to walk a mile alone on hills to wash my clothes. If stuff the dirty clothes on bags then into my backpack with soap and walk to the laundry mat. Then I'd have to sit there alone surrounded by strangers and wait while my clothes went through the process of washing and drying. Then is have to fold them and place them in my backpack and walk back to the hospital where I slept in a sleep room with 8 other mothers whom I didn't know and put away the clean clothes in my suitcase. There was no privacy. Something I ALWAYS had to have. 

I had to get over it and realize that this was it. This was my new life, our life. At some point I resigned myself to thinking that this was what our life would be from now on. I clung onto the simple things like routine. The doctors and nurses had a routine for Liam and I had a routine along with them that flowed perfectly. 

At one point even that changed as we were finally approved to live at the Ronald McDonald house and justin and Lanie could come and stay permenetly. Again I had to improve and chane the routine until we got one that worked. It was easier to accept that this was it. Our family was together and complete. 

Anyhow. Today three years ago marked the day things started to get better. The day our story started changing from one of tragety to one of success and inspiration.  Just 3 days after his repair surgery and the beginning of great things happening. 

30th Hospital Stay

Yes it's official.

Liam has had his 30th hospital stay.

We've had a hell of a week!!

On the 17th Liam was taken to Children's hospital ER.

He was vomiting,

running a fever,

and required oxygen.

By the time we got to ER,

it's an hour drive,

Liam was breathing very heavy.

So heavy that it had the nurse scared.

She put an oxygen mask on him and pumped 13 litters into it.

I had had him on only 1 1/2 litters.

After quiet some time on 13 liters and an hour treatment

his breathing calmed down.

They took blood for labs.

Checking all the usual possibilities like mediport infection.

At the end of getting the blood out of the mediport,

it clogged up on them.

A blood clot got lodged and they were unable to get it out.

They called the doc and had to place an IV in his hand.

Thanks to all the time he's had to heal his veins,

getting an IV was a snap.

Through the IV they gave Liam fluids,

and some very powerful heavy duty antibiotics just in case it was a mediport infecion.

They used TPA to try an break up the clot.

It was very hard for them to get the TPA into the mediport.

The nurse pushed with all her might to get it in.

Two hours later it was still clogged.

By this time we already knew Liam was being admitted.

One for the clot in his mediport.

Two for his labs showing elevated white blood count.

Three not tolerating feeds.

Four his sudden oxygen requirement.

Good news was the xray of his lungs looked clear.

At 6am on the 18th we were still in ER.

Justin came to stay with Liam so I could rush home and work at 8:30am.

Later that morning the nurses in ER tried again to draw from his mediport.

They were again,

unsuccessful.

So they pushed TPA again.

My husband said that the nurse pushed even harder.

He said she pushed the TPA with all she had and was straining to get it in.

Then after a few hours they tried to draw blood.

hey got very very little. Just pulled enough into the needle line before stopping.

They were quick to announce that his mediport was now unclogged.

HMM....

Still because it was barely working they continued to use the IV in his hand.

Smart move on their part considering how this story ends.

They didn't start Liam's feeds back up until late afternoon on the 18th.

He was able to tolerate a full bolus of 4oz of Pediatric Compleate.

His 12 hour continuos bolus also went very well.

He continued to need oxygen and get breathing treatments around the clock.

At 11am on the 19th they took Liam completely off oxygen.

He tolerated room air perfectly at this point.

The "doctor" told us that if Liam tolerated room air for 24 hours,

then he would be allowed to go home.

Meanwhile his blood cultures came back negative.

Meaning no mediport infection.

(theres more to this just wait)

We still had no clue what was wrong with Liam.

On thursday the 19th at 7pm I arrived in Liam's hospital room.

I almost couldn't function while away from him knowing he was sick.

I felt horrible for not being by his side.

I even had a break down and cried about it.

I was so happy to be back at his side and caring for him.

He was happy to see me too.

Mommy gave him loads and loads of cuddles and anything he asked for.

I had took one look at Liam IV in his hand,

and explained to the nurse I felt his hand looked really puffy like it was blown.

She said that yes his hand was puffy but it was fine.

I told her i really felt it was gone.

She felt his hand and said it was fine.

I didn't want to make waves.

I knew that sometimes Liams hand did get pudgy when it was taped like that,

but I also knew that when it was red and puffy like that,

chanced were good it was blown.

I took her word though since she'd been watching him for two nights now.

During the night on the 19th/20th Liam started vomiting.

I honestly thought it was from coughing so much.

Because he started coughing before he vomited the nurses agreed.

We were even able to continue the feed.

He ended up doing this twice in the matter of 30 minutes.

The only major problem we saw was that he would start his coughing attacks,

about 30 minutes before his treatment was due.

Thankfully all the RT's were right on time.

On Friday the 20th the Doctors and "doctor" declared that Liam was good to go home.

When we finally got the discharge paper work it was around 5pm.

First to come out was the mediport.

They'd kept the mediport needle in just in case.

The nurse flushed it with hepran,

like we always do.

Then took off the dressing and out came the needle.

No hassle,

no pulling,

not like normal.

What came out with the needle?

All the hepran she had just pushed.

You know what a blown IV look like?

Well this looked just like that but bigger and on his chest.

I staired at it and then at her in question.

My brain tried to process what the situation was and what it all meant.

At the same time both the nurse and I mentally hit our heads on that metaphoric wall.

We started talking about how the heck this could happen.

After talking about everything from ER to then,

we were able to come to a conclusion we both agreed on.

The ER nurse was NOT supposed to push the TPA (or anything else) that hard.

Why?

Because it could cause the needle to dislodge.

And what had happened here?

The needle dislodged!!

Thankfully we didn't use it!

So then we called the "doctor" and notified him of what had happened.

He came in to talk to me so I asked what the side effects were.

I mean we just put in a whole months worth of TPA straight into Liam's chest cavity.

A medicine that's supposed to prevent the blood in the mediport from clotting.

What was his responce?

That the body would absorb it in time and he would be fine.

No side effects.

Really??

The charge nurse came in later to let me know this happened once to an adult patients mediport she was working with and his entire left side swelled up pretty bad and was red.

But yea the "doctor" said no side effects.

Thankfully there are nurses there who care and let me know what the possibilities were.

Seriously we've had some amazing nurses in this journey.

Ones I would have been lost without.

Finally it was time for the discharge instructions.

The nurse and I were going through the paper work,

and we were both confounded and pissed at what we were reading.

The "doctor" wrote a bunch of symptoms and diagnosis that Liam never had.

He wrote that Liam was on meds he was never on.

He also stated that Liam had a broviac instead of a mediport.

BIG DIFFERENCE!!!

The nurse apologozed profusely for this.

That's when I learned that the "doctor"

was actually a second year med student.

REALLY???

I was fumming pissed.

No wonder he seemed like he knew nothing and had NO answers for us!

Instead of waiting around for notes at this point,

I made noted on her copy of the paperwork before signing it.

She made several notes of her own.

She said this guy was on her list because he was always screwing up.

Putting our frustration and anger aside,

it was time to get the IV out of Liam's hand.

Guess what we find?

His IV had blown as well!!

I told the nurse how I had thought it was the night before,

but when I brought it up to the night nurse she insured me it was fine.

At this point our poor nurse was at her wits end.

She explained that she was going to talk to the head doctor of that group,

explain what had happened with the other "doctor",

as well as make a incident report.

She said it needed to be documented in case Liam ended up having symptoms from it.

She had our back all the way.

After I dressed Liam and we grabbed all our stuff,

we left.

As we walked through past the nurse's station we found our nurse on the phone.

Sure enough she was already making the complaints and incident reports.

I swear this lady had a heart of gold.

I can only hope that if and when Liam has  to go back,

that we get her again.

I truely love her for honestly caring about our little lamb.

What's going on now?

Well Liam hasn't gotten better.

In fact since he's been discharged he's gotten worse.

The next day (21st)

Liam started running fevers.

101.6 on saturday morning.

I almost rushed him back that very minute.

In fact he was looking so bad on saturday morning that I called into work and started packing our bags.

Justin talked to me and convinced me to calm down and take a few steps before rushing off.

We gave him motrin and a cool shower and he cooled off.

He was also breathing fast and coughing so we gave an early treatment.

At this point we were doing albuterol very 4 hours.

His pulmacurt and atravant in the morning and night.

At nights he was vomiting his formula feeds.

We had to stop them as soon as that happened.

It wasn't just some vomit but full on perjectile.

On sunday we was still running fevers.

I went and bought gatoraide to run through his tube to keep him hydrated.

We also had to start using atrovant every 4 hours.

Liam was getting a treatment every 2 hours at this point.

He was also needing oxygen at night.

Sunday night/ Monday morning ay 1am he started vomiting without even coughing.

Again it was perjectile.

I stopped the formula and started gatoraide.

During the late mornings and into the evening Liam seemed fine.

If it wasn't for all the coughing you'd never know he was sick.

Monday I had to call into work again.

Liam had to go see our pediatrician.

It was mandatory.

Liam's cough and the way he behaved screamed it was time.

Our pediatrician gave him a combined albuterol/atrovant treatment so he could hear the before and after in Liam's lungs.

Thankfully he said the wheeze pretty much went away,

and it didn't sound like pnuemonia.

So we went home with a different breathing treatment plan.

Albuterol every 3 hours.

Atrovant every 6 hours

This has helped but Liam is still so congested.

We also started gatoraide boluses in the daytime.

This is to ensure he stays hydrated.

And our pedi is ok with oxygen use at night.

He said whatever helps Liam stay home longer.

Today Liam has thrown up twice on his boluses.

He barely tolerates 2 oz when his normal is 4.

This had be extremely worried.

I called home every break I had to check on him.

Every time Liam wasn't running a fever,

refused to eat anything,

and was running amok like normal.

Still the very low calorie intake was so stressful.

Our pedi,

who is amazing and the best EVER,

made a house call tonight to check on him.

Liam's lungs have a wheeze here and there,

but are moving air well.

He said to keep doing what we're doing.

Lower the night feed rate so he keeps the formula down.

That way he gets calories in him.

He said he's ok with oxygen usage at night.

He feels that Liam can still stay home at this point.

Thank Heavens because I was so worried.

We are to text him tomarrow letting him know how Liam's doing.

Yes text him,

as in his personal cell phone.

Thats how awesome our pediatrician is.

In other good news,

the Pediatric Compleate was approved my insurance and will be delivered tomarrow.

We were first told it would not be covered,

because it's made by nestle.

Well that worker was thankfully wrong.

Our GI gave us a case of it a few weeks ago to try.

The transition from Elecare JR to Compleate was seemless.

Liam has never tollerated something so quickly and seemlessly before.

Compleate isn't an actual formula because it is not milk based.

It's actual food blended up.

When I was blending foods and pushing them through Liams gtube

we saw an immediate response.

He was more energetic.

He stopped retching and vomiting,

And he started packing on the weight faster than ever.

That says alot because Liam seldomly gains weight.

When we tried a whole case of Compleate,

I saw an immediate response.

No retching or vomiting.

More energetic.

And from one day to the next I could see weight gain in his belly.

Justin thought I was joking and didn't believe me.

But one look at Liam's belly and he was shocked.

There was a belly begining.

This was exciting.

So when we were told monday that it wouldn't be covered,

we were both so very frustrated and angry.

Compleate had given us hope,

and that hope had been ripped from out eyes.

God must have heard our prayers and given us a miracle.

We are so excited that his Compleate will be here tomarrow.

We hope that he tollerates it better right now than the formula.

I say that just because he is sick and not tolerating much of anything.

Already in this bought of sickness,

Liam has lost weight.

You can see it by just looking at him.

No need for scales with him because its very visable.

I feel so blessed that this prayer has been answered.

And if insurance hadn't covered it,

I have a very dear friend with a CDH baby of her own who is on Compleate.

She offered to supply us with some knowing how hard it is for these kids to gain weight.

I absolutely love that I have grown so close to a few mom's with CDHers,

and that we can help each other out when we can.

In other news:

Lanie has a bad ear infection.

It just started hurting last night.

She came to me crying in pain so I took her to urgent care.

The doctor there was shocked it had only started hurting that day.

She said it looked like it had been brewing for some time now.

I'm really glad we caught it before it became even worse.

Lanie hasn't complaint very much at all over it.

I fear that it could be because she knows we're under alot of stress as it is that she doesn't want to cause us more.

I sat her down and explained to her that she never should fear telling us anything.

That is shes hurting she needs to let us know so we can help.

I told her shes too young to worry.

She promised me that she hadn't been keeping it from us.

So then I started thinking that because she used to have ear infections chronically,

that she built up a tollerance to the pain.

Kind of like I built of a tollerance to my back pain.

I've only gotten worse.

Physical Therapy did strengthen my core like we wanted it too.

Only it didn't solve the problem.

In fact it might have made it worse in some ways.

I still have the pins and needles pain all over.

My upper spine cracks alot and stays sore.

My whole body stays sore for the pins and needles feeling.

The longer I'm on my feet the number and worse they get.

I missed last fridays appointment because I was at the hospital with Liam,

so I can't get into him again until July 7th.

He wants me to take meds to detox the aspertame poisoning he feels never went away.

He's also referring me to a nuerologist.

I have an MRI tomarrow.

Hoping we get some news from that very soon.

I just need to know what the problem is so that I can fix it asap.

The pain had climbed to a new level that my body is having a hard time getting used to so I can block it out.

I might have 1 decent day out of 10.

Today was my last PT appointment.

They did their last evaluation.

They feel I've outgrown what they can do for me and she also felt really bad she couldn't help make the pain go away.

I'm actually sad to see it stop.

I really liked them and think they were doing great with me.

But all good things must come to an end.

Now I need to hold myself accountable and get to the gym.

I know what I have to do to continue to strengthen my muscles and need to stick with it.

Now to reward those whose read the whole blog post: