Inspirational True Story

Post from April 11, 2011 from an old blog I no longer use.

Today (April 11, 2011)  I talked with an older man. He was unbelievable nice and open. He told me how just about a year ago he was diagnosed with lung cancer and given only 3 months to live. This man was a truck driver who went in for his mandatory physical and that was how he found out. He was sent to a specialist in the area and they found several large spots on his lungs. The doctor decided that they needed to try something that was newly developed and only been testing for 6 months. It's kind of like chemo but genetic. He explained to me that it's a new kind of chemo that actually goes straight to the cancer to kill it off. Unlike the chemo we're all used to that they shoot into your body and pray it lands in the correct area to kill off the cancer. Just a few weeks ago, after only 2 sessions of this new genetic-chemo, this man went back to his specialist for his check-up and found that the spots were dead. When he went back a second time the doctor walked into the office grabbed the mans hand and shook it. The doctor continued to shake his hand as he congratulated the man letting him know that not only was the cancer spots dead but they have disappeared. He was declared cancer free. It's amazing the breakthroughs that are happening. Just a month ago I was depressed because here my husband just lost his aunt to cancer, then my aunt had to be tested for cancer and then we found out my husbands buddies son was diagnosed with cancer. I was angry and mad that we haven't found a way to fight the cancer more effectively or found a cure. It seems everyday we're getting closer. This man agreed to receive experimental treatment and because his bravery he is now cancer free. It's amazing. I felt his story should be told, that we should all take it in and know that even when life seems to be dark and glum that there is light. There is good and there is hope. When a doctor looks at you and says "you have cancer" and only have so long to live means you should fight harder. Don't give up. Doctors don't know everything. They can estimate but its never a sure thing. Miracles happen everyday. Sometimes you just have to take a chance. Follow your heart.

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!! 

A Trip Down Memory Lane Aug 23 2011

4 years ago today we got word that it was official our son would be headed home for the very first time. Everyone was shocked. The doctors stood their staring at him, literally scratching their heads then told us they didn't know how he'd done it but he was ready to go home!! Hubby and I laughed at them saying "ha ha very funny" as if they were just joking with us, which we thought they were. Turned out they were dead seriously. They just couldn't understand how he went from not expecting to live to flying through NICU and surviving. We told them it was because he prayed. We had people all over the world praying for him. We believed God would give him the strength he needed to fight. And I knew he had plenty of fight in him to win. I told him so everyday. I thank God everyday for him and for everyone who prayed and continue to pray for Liam. ❤️❤️❤️ #cdhawareness #nicugrad #likeaboss #nevergiveup

4

Yesterday we celebrated Liam's 4th birthday. The night before I rocked him before bedtime, hugging him close and told him how proud I was of him for surviving all he's been through and staying strong. 

I told him how his strength has taught me to be strong. How this journey has made my love for him stronger and my appreciated for waking up each morning greater. 

Then I cried a few tears. And for once, on the eve of his birthday, they were tears of joy. I cried tears of joy because we survived. Because this past year was so amazingly free, having had a total of zero hospitalizations and only two out patient surgeries.

We got a taste of what life should really be like without our little lamb and I know that this is only the start. So my tears were also for our future happiness and freedom and simply having faith that there would be happiness in the future. 

Yesterday I sang Liam happy birthday at 5 am when he woke up from a bad dream. He fell back to sleep with a smile on his face. We went and bought cake. One for his birthday party and one for the 4 of us after dinner.

Liam got the Mario party he'd been asking for. Both cakes in the Mario theme. I took him to Adventure Park where he played arcade games to his hearts desire, ate pizza, drank soda, ate cupcakes, and won prizes. 

He had a blast, exactly what he deserved. After dinner of his choice (more pizza), he opened presents. We bought him a Mario backpack and lunch pail for school. He got a Mario and a Luigu action figure. A Mario cup, Mario movie. Liam was excited. 

Sister gave him a goody gift bag filled with a Thomas movie, Thomas book, and several little toys. We also put together a minion gift bag with a reusable minion bag, two minions that light up and three pairs of minion socks. And just like a normal boy he held the socks up, made a eww noise then tossed the socks aside. We laughed. 

I may not have pulled off the big extravagant party I really wanted to throw him, but I learnt that he had everything he wanted and more with just a few friends and cake. It was perfect. 

Daily Struggles

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

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

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

Huh?! What?! Since when?! 

I left it alone and finished the drive to school. 

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

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

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

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

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

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

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

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

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

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

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

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

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

First Cuddles 7/28/11

3 years ago today was the first time I ever held Liam in my arms. I had waited so long and felt it would never be possible. But it was possible and exactly what I needed that night more than anything in the entire world. And once I held him I didn't want to put him back. But as exciting as it was to hold my dear sweet little 5 lb 18 day old baby the memory will forever be marred and tattooed on my brain forever. If you look at the top view of him you can see why but for those you don't see I'll elaborate. Liam wasn't ready to fly. They had just taken the feeding tube out and put him on cpap. He wasn't ready. And even though after a mere 5 min cuddling my son we had no choice put to put him back in his beg and call for respiratory. Liam wasn't getting adequate oxygen and was turning blue, slowly suffocating. A nightmare I still get to this day. They tried a different setting but before 24 hours on cpap he had to go back to the breathing tube. He just wasn't ready. A few shaky breathes later and I resigned myself to be ok with that. To accept it because there was not else I could do and I'd rather have him here with me than not. I realized then that fear can be just as strong as love. And just like love it can over take you completely even over ride love if your not careful. My love meant more than my fear. I let my love for him shine through every minute of everyday hoping that he would feel it and fight harder. I thank God everyday. 3 Yeats ago today and I still cherish every hug, kiss and cuddle as if it was the first. #cdh #cdhsucks #ihatecdh #survivor #love 

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. 

Forever Love

"I protected you in my womb, I have you life. I cried when they took you, I rushed to be with you. I sat by your side, I watched as you fought. I held your hand wile you slept, I cried when you tried. I laughed when you smiled, I held you close when I could. I kissed you every chance I got. I sang you too sleep, I read to you every night. I never lost faith, I never gave up. I loved you then I will love you forever because I am your mother." I wrote this for Liam about our experience in NICU #cdh #cdhsucks #survivor #wasntexpectedtosurvive #heshowedthem #miracle #nicu #blessed 

Therapy Day

Liam had a long day of therapies. First Bright Start came out to the house to work with him. 

Liam did great. They did a cupcake puzzle, read Brown Bear and looked through a book of different transportation and worked on saying the words. He's a smarty pants. 

After Bright Start we went to the park to meet his physical therapist for PT. Liam worked really hard. He did a lot of upward climbing and downward stepping. A whole hour and a half of intense work for him but he loved every step of it. 

This one used to be tricky for him because it was uneven and wiggled as you walked. He did amazing. 

He climbed the talk rock structure all the way to the too with little help. He is very brave and a risk taker for sure. 

Walking up (or down) used to be such a struggle for him. He had to have you hold both hands and holding the poles was so difficult a few months ago. Now he uses only one hand to walk up. Sometimes two depending. 

It was amazing to see his progress. 

#pt #physicaltherapy #cdh #cdhawareness #developmentallybehind #workinghardtocatchup

View more of our daily activities on our FB page http://www.facebook.com/MommyConfessionalinmyshoes

Liam's Sick Again

Liam has been sick since mid-December. His pedi diagnosed him with a sinus infection on Jan 2nd and he has been on antibiotics since. He hasn't been tollerating night feed even at 35 mls per hour. I had stated doing boluses of blended diet through the night just to give him more cals since blended diet was all he's been tollerating. It's been rough on our little guy. 

Liam had another cranky day today. That's two days in a row now that he's seemed miserable. Lots of whining and lot of cuddles. Even from daddy who says Liam's just being a whiner and we need to my baby him. Hahaha funny daddy! I caught him in the act of coddling our little one.  You've seen his face! It's impossible not too. I felt like I had a tail today because he would follow me from room to room and just watch me and randomly grab my leg and hug tight and say "moooommmieee" I pat his back and say "Hi baby" or "yes Liam" or "love you too buddy" and he'd let go and continue to follow. It was really sweet. One he asked "moooommmieee up" so I picked him up and carried him into the living room where we sat on the couch and cuddled. After maybe 5 min he was ready to walk away from me for about 5 min the. He became my tail again. He melts my heart. This continued until about 6:30pm when he lost the battle and fell asleep on the floor with my fuzzy pj pants that he decided to carry around all day today. I laughed when he walked out of the bedroom with then held tight in his little arms. He looked up at me smiled and had laid his head down on them and said "aahhh". He has this new thing he does when he's hungry. He grabs his tube and says "eat". When I was preparing the syringe of food I let him stand on the step stool in front of me because he likes to watch now (also a new thing) and today I opened the container of blended diet and he immediately grab the syringe and sticks it in the container. Daddy was shocked and I just laughed. Liam already understands that the tube goes Ito his belly port and that the syringe goes into that port so why wouldn't he pick up that tr syringe has to go into the food first. Silly boy wants to do it all himself now. I applaud his smartness. It really shows that he understands how things work. Another he now likes to do is hold your hand while you walk. Even though we're just going to go grab a diaper and change him or go sit to do a feed, if its something for him where he knows he has to go he wants to hold your hand. I love it. Unfortunately the diaper rash from the antibiotics got bad and I did everything I had on hand including nystatin from his last rash. It didn't help. I went to the store today and got A&D ointment and after one use it looked 100x better! No bumps, not as red or as large. So happy I decided to try it. Liam hasn't been coughing anymore than he normally would. That icky cough is gone for about 2 days. No running nose either. I have him on the feeding pump right now at a reduced rate of 55mls per hr. praying he tolerates it because he gets more cals in the long run at night this way. If he tolerates tonight ill increase it tomarrow night. We also haven't been letting Liam outside the past few days because of the air quality. I've gone out to the store a few times this last week and I'm so stuffed up from it. Liam does NOT need to be out there. Also more good news no extra breathing treatments have been needed over the weekend! So happy little lamb is feeling better. 

Liam coloring: