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

Mommy Medical Update

I've been procrastinating on updating because to update on my medical well being, I have to think about my medical well being. That's something I don't want to do. But here it is...

April 2nd was my last appointment with the neurologist. 

-my bloodwork came back clean. I didn't have heavy metal poisoning. 

-the MRI of my brain showed I had a healthy "beautiful" brain. 

-He did an EMG to test my nerves and it showed that my nerves were fine. Whatever's causing the numbness and tingling has nothing to do with my nerves. 

Basically he found nothing neurologically wrong with me and is unable to treat me or continue to see me. How can my nervous system be effected yet not be effected. It's very frustrating. 

Today I went to the cardiologist and have a ECO done of my heart. All EKGs I've had in the past showed nothing wrong but because this problem continued everyone felt I needed an ECO. I didn't get the results of the ECO. I didn't even see the doctor today. A nurse hooked me into a heart monitor that I am wearing until tomorrow. Then I'll go and have it taken off. Again I don't think I'll get any results. 

I doubt they'll find anything wrong because that's the story of my life, or my "illness". They never figure out what's wrong with me. There's no reason why I should be in constant pain or have constant headaches or fatigue, but I do. 

And it sucks!

I've been suffering from dizzy spells and vertigo lately. Today there's been a lot of dizziness. I can't seem to shake it. I jus want it all to go away. 

On the plus side, Liam went to my appointment with me and he behaved. He was quiet in the waiting room (which by the way was akward because I was the youngest patient there and everyone kept giving my weird looks. I had to just avoid looking at anyone because they wouldn't stop staring). 

I was also able to spread CDH awareness to several of the staff members. The ECO tech was curios why Liam was so curios about the machine and why he climbed up on the table, rubbed my belly and kept saying "it ok mommy. Your ok" over and over. I explained his medical history and how he was just so used to all the procedures. I almost started crying because my baby boy was making sure I knew he was there for me just like I had done a million times over for him. That's was a sign I was doing things right. 

The nurse who put the monitor on me fell in love with Liam. She asked him for a hug and then picked him up in a hug. All of a sudden a weird look crossed her face and she asked how old he was. Hearing that he was almost 4 years old she commented on how light weight he was. That opened the window to explain why. After hearing he was failure to thrive and had a feeding tube she asked if he could have some candy. I laughed and explained he could eat whatever he wanted so she loaded him up with a sucker, Reece's fast break and a lindor truffle. Liam thought he hit the jackpot and laid on the puppy dog dreamy eyes and a huge smile on her. It was adorable. 

But the best moment of the whole day was Liam telling me "it ok mommy. Your ok". ❤️❤️❤️

Surgery Tomorrow

Tomorrow is the day. Liam must be at Children's tomorrow no later than 7am for his scope and possible relocation of his gtube. We have to leave at 5:30a to make sure we get there on time. I'm nervous that Liam is going under and nervous that he's most likely going to have to have another hole cut into him. We need to do whatever we have to to stop the pain he's having now though. We also need to be able to use the feeding pump again at night. It's that moment of complete and utter "my hands are tied and there's nothing I can do" kind of situation. To top it off his allergies are bonkers again causing his asthma to act up. Please pray for Liam and pray that the doctors make the right decisions. Thank you ❤️❤️❤️ #cdh #cdhsucks #surgery #gtube #tubie #spoonie #feedingtubeawareness 

Taken last night when Liam woke up crying in pain saying "my belly button hurts". Breaks my heart 

Dear Feeding Pump

I hated you when they first handed you to me. It wasn't that you were complicated to figure out, because you were far from that. It was simply the fact that my son required you. 

Without you and his feeding tube he would of lived a life inside the hospital hooked to IV's until he withered away. 

I grew to, not love you but respect you. You were the trusty little machine that kept it all going, giving me less sleepless nights.

The you decided to cause problems. Alarming in the middle of the night when the world was sound asleep. You sounded off like a tornado warning, scaring the crap out of me. Giving me a heart attack, just to tell me there was a flow error. 

And after fixing said flow error, you would alarm again. I would fix you again and again and again and again. Yet nothing worked.

We started calling and having you replaced. Still the newly delivered pump would start the same process of alarming just a few days after delivery.

Your alarms have put much added stress onto my life. They've caused my PTSD and anxiety to soar high. I have nightmares of the pump alarming. I sit there at night listening to the gears wind, pulling formula through and pushing it into you. I sit on the edge of the bed, my heart racing, biting my nails knowing that no matter what I do the alarm will come. It's just a matter of time. 

Nothing can prepare me for your error alarms or the flood of emotions and anxiety that comes with each and every siren, because that's what it sounds like. A siren going off in the middle of the night warning us we are under attack and that the bombs are surely about to drop. That's how my body reacts anyhow.

Every night I sit on the edge of the bed, shaking and waiting. When the alarm goes off all I can do is silence it and go through the list of things to check. And try so hard not to cry in frustration. Of course there is nothing wrong with the line. There is no "downstream occlusion" as you warn there is. Nothing. Everything is fine. Yet you still alarm. 

Finally, after hours of fighting the pump, I turn it off and resort to bolus feeds through out the night. No longer am I getting any sleep because I need to be up every 2 hours to bolus my son and that's still not as much as he gets through the pump.

And I cry. Because I see that my son isn't gaining weight. In fact he's loosing it because he gets more through the pump than I can possibly bolus.

So dear trusty, dependable pump.....

Your a jerk. You've failed my son. You've failed me. You are no longer a useful member of our family. No longer a trusted piece of medical equipment. I no longer have any respect for you and just want you out of my house!

Note: The pump brand in question is the Kangaroo Joey and the Kangaroo E pump. The events posted above are true. I've spent years fighting with both the pump and the medical supply companies to replace the pumps. We've gone through countless and it's been frustrating. After 3 years and 5 months with a Kangaroo, I've requested my sons insurance to change out our pump to the infinity. I know many people who have made the switch and have had no problems at all with their infinity. I was also told by insurance and the supply co that the Kangaroo is no longer being made. My suggestion to you is to not wait it out and fight with the Kangaroo as long as I have. Because of this my anxiety runs high. What I wrote above saying how I felt is all true. 

Go Away Tubie Go Away

(Pictured in Liam with his first post NICU feeding tube featuring tagaderm cut into the shape of a heart by me because this was the first NGtube I ever put in)

Tube feeding.

Not the hardest thing I've ever had to go through with Liam.

But I still cried when they said Liam was failure to thrive (FTT) and needed a tube.

3 years and 3 months later and it isn't getting any easier.

Liam ditched the NG just about a month after receiving it and "upgraded" to a Gtube.

He then went from a Gtube to a GJtube and back to the Gtube.

Last week Liam started crying over Gtube pain.

I rushed him to the GI because I thought it was infected.

I was told it didn't look too bad so we just did antibiotic creams.

That was last Wed.

Thursday I changed his tube out for a new one.

That badly irritated it and caused bleeding and worse pain.

Liam hasn't made it through a whole 3 hours of school because of the pain.

He doesn't go an hour and a half without crying in pain.

Today I called GI back and explained the situation.

She (Brittney) said that we need to try oral antibiotics.

She called our main GI and he said that if the antibiotics don't help within the next 3-4 days that the next course and to try a different type of tube.

I explained that that wasn't possible because the AMT mini one balloon-less button has been the ONLY button that worked for him.

She asked why the mickey didn't work and I explained that the balloon hits his pilorex muscle causing him to vomit.

This concerned her immensely.

She said that means the position of the tube is too low and that it needs to be moved higher.

So the conclusion is that if the antibiotics don't work that Liam will need to go into surgery to have his stoma closed and a new hole made for the tube.

I don't want this.

I don't want him to have to have surgery.

Yes I think he needs it.

I think this is the right move for him and it will help.

I just don't want to have my sweet boy have to go through surgery again.

As a mom I want to protect my little boy.

I want to keep him from pain and to keep him happy.

I'm scared for him.

You Don't Tell A Boy No

If you know me, Liam or what we've been through since he's been born then you know about his tubie Journey. 

You know that he's failure to thrive, meaning he doesn't grow like a healthy child. He doesn't eat enough my mouth to gain proper weight so he has a feeding tube. Gtube. 

If you've followed us you know that Not only does Liam not eat enough but he's very picky on what he will eat. This is caused by a severe oral aversion due to all that time being intubated and all the times he's vomited. No one wants to eat if they're just going to bring it back up. It's painful. 

So of you know all this, than you probably know that I don't deny Liam food. Just about anything he wants to eat, he's allowed. At any given moment. 

So it's probably no surprise that Liam's sitting here eating popcorn after dinner. Why? Because he wanted it. 

I do try to help him make healthy choices. I still sit him down for breakfast, lunch, and dinner with a plate of whatever we eat. He knows he must sit there even if he doesn't want to eat. For a few minutes anyway. We try to get him to at least try the foods even if it means eating off our plates. Whatever gets those calories into his mouth and down to his stomach. 

Once he knows he likes the food, he is willing to eat it off his own plate. I make a lot of the same things repeatedly because I know he will eat them. After all, the goal is to eventually get rid of the feeding tube. 

He loves meet in almost any form, including beef jerkey. He loves eggs, French fries, cereal, pop tarts, popcorn, chips, potatoes, bananas. I could keep going but I won't. 

After working and talking to many specialist and GI's, and everything failing, I had to find a way to make eating happen. I had to teach Liam how good foods can be. Nothing anyone did helped. Except what I've done. I'm not trying to brag, just simply stating a fact. 

I've worked very hard to get Liam where he is today with eating so I'm not ashamed to say I hardly ever tell him no when it comes to food. 

Even if it means popcorn for desert. 

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. 

Shutting down

Today seemed to be such a big day and it's only half done. 

This morning Liam was so excited to go to preschool. In fact at one moment he thought we were leaving without him and he got upset. When he realized he was going he was super excited. 

See that smile? That's Liam happy for school. 

Everyday we wait at the gate until the teachers are ready for us. This pic screams "let me in" lol. He was shaking the gate because he wanted in so bad. 

Every morning the kids go find their names on the table then stick the. To the Velcro strips. This helps them recognize their names. Liam had no trouble finding his. 

Today when I picked Liam up from preschool I could see in his eyes that he was shutting down. Today had just been too much for him. This was the moment I feared. I was afraid that every school day would be like this but turns out this was the first. He refused to talk. He looked at me but wouldn't make eye contact with me or anyone. He wouldn't wave bye. I asked him if he wanted me to carry him and he just lifted his arms. After picking him up he laid his head on my shoulder hiding his eyes in the crook of my neck. It broke my heart to see him like this. 

I put him in the car seat and he just sat there quietly until we got home. Still at home he refused to talk or play. I have him a bolus feed and took his shoes off. He soon fell asleep but the rest was short lived. He woke up extremely cranky and cried and screamed. Yes today had deffinatemy been too much. Unfortunately it wasn't over. I had to take him to his GI appointment. 

At GI Liam calmly and quietly petted Nemo. We got some good news. 

As far as his proportionate growth he is in the 3rd percentile. That just means his height, weight and head are more porportionate than he used to be which is good. His weight and height for age is still off the chart, or barely on I'm not quite sure. We agreed that as long as his porportionate growth is getting better then we wouldn't worry about the age to growth ratio. Brittany (Our GI's NP) and our GI are ok with his growth as long as it's porportionate. They'd love for the porportionate growth to be in the 10th percentile and I agreed to up his feeds to give it a shot. They don't expect miracles with him and understand that if he doesn't make it then he just doesn't BUT they said that if he continues this growth pattern then he will reach it by the next appointment in January. 

Liam's stoma is showing signs of prolong but the good news is that what had popped out of his stoma popped right back in when I pushed on his gtube. She said this was ok as long as it popped back in and didn't stay out. If it stays out then we have a problem she said. The skin around his stoma is breaking down 😔 and I have to keep a close eye on it. If it shows sign of infection I have to call right right away. 

They gave me samples of a protective cream to keep this from getting worse. I have to use it and neosporin. She said that it should be better in about a week and a half. 

On other good news she gave me more gauze because home care isn't sending enough and she's contacted them and sent a script for them to tripple the amount of gauze he's getting now. She said I should not have to pay for it ever. 

What an eventful half day and that was only for Liam lol. I feel blessed that Liam has such great care providers that actually care. 

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. 

Hidden Sacrifices

I saw this on Facebook and had to share. As a caregiver to a medically complex child I know all too well the sacrifices that need to be made. We give up everything, even ourselves for our loved ones. 

What we do goes unnoticed and underappriciated. We suffer along with our loved ones and put our pain aside to make room to ease their pain and suffering. 

We don't do it for recognition. We do it because we love the person we are caring for. It's simple. 

As a caregiver I give up the majority of my time to take care of my child. I give up sleep every night and am often exhausted. I spend a lot of time worrying about what needs to be done for Liam. I have no "free" time, no time to myself. I'm often asleep as soon as my head hits the pillow to only be up half the night with my son. 

Money that would be "extra" that could be used on maybe buying something extra is used to put gas in the car to get Liam to his many appointments. Regular maintenance like oil changes and tires as well. There are meds insurance doesn't buy that we have too. 

We don't do this for the recognition. We do it without complaint because we love Liam. Because he is our son and he deserves the chance at a normal life. So if we have to give up some sleep and buy extras to help move him towards a healthy future then that's what we will do. 

NASCAR Sunday

What a Sunday, or NASCAR Sunday as we call it. Liam absolutely loves NASCAR and watches every race from start to finish cheering on Jimmie Johnson and the 48 car. We had a great day. Here's some pics I took through out the day. 

Liam watching NASCAR. 

This picture melts my heart. 

Liam was exhausted and fell asleep halfway through the race. 

Lanie playing with Blu and Luiz stuffed Rio toys and watching her Tia make food. 

Tia hard at work making dinner. 

He's infatuated with his button and showing it off. 

I love this pic so much I used it for feeding tube awareness:

Lanie and I making funny faces at each other. We do this often. 

I find this picture so endearing. Lanie helping her uncle BBQ while Zues stands guard. 

We had a blast. Jimmie Johnson won today's race. What could be better?! 

The Normal Things : Part 2

There was a time when we weren't sure there would be a future with Liam. When we weren't sure he would survive CDH, the repair surgery, his damaged lungs or anything else thrown at him. Imagining him older than he was or healthy was nearly impossible. 

Then there was a time after he survived CDH and all of what NICU offered, that we didn't know if he would have a future where he could do normal things. The future seemed sketchy so I tried to live for just the day, maybe even the following day if I felt brave. I couldn't see my baby  boy playing in a pool or attending races or riding a bike. I couldn't see him walking through the mall just taking in the sights. I always wished and prayed for it and kept hoping. 

You look at Liam today and it's hard to believe that tiny baby in NICU that was fighting for his life was him. 

But I've learned from my own past as well as Liam's life that the past does not always dictate the future. 

You can choose to let the past claim you and overtake you or you can choose what your future will be. 

For me happiness is all I need. 

In the past we never would have even thought of taking Liam to the races... Of ANY kind. Between the noise and the crowd of being potentially carrying viruses it wasn't an option. 

Now look at us:

We used to go to the mini sprint races all the time before Liam was born. We loved it. We haven't been since he was born. Last Friday night we decided it was time. We bought both kids eat muffs to cut out the noise just in case. Lanie has sensitive ears and wore her most the time.

Liam however is another story. He LOVES the sound of the cars loud engines roaring as they race. We kept putting the ear muffs on him only to have him take them off again. 

Liam has racing in his blood. He doesn't are what kind of cars are racing, he loves them all. 

I loved watching him cheer on all the cars. 

He even took his sister purple checkered flag to cheer on the race. 

Both kids had a blast. We can't wait to go again for the next race. 

Cheering is very hard work and Liam finally lost the battle against sleep during the last race. 

The normal things are what make all the medical appointment, meds and hospital stays bearable. They make life fun and give us reason to carry on. 

The Normal Things: Part 1

Life with a CDHer isn't easy. As a family, everything changes. Things we used to do before seize to happen. You take for grantit all the little things that make life fun and interesting:

Going to the mall just to walk around and window shop. 

Going swimming. 

Attending parties with friends and family. 

The occasional dinner out. 

Even something as simple as taking an hour to yourself to go grab coffee with a friend. 

When Liam was born with CDH everything changed. It's taken me awhile to realize how much the little things mean and how badly I need them. 

No this is not a post to rant and rave but to celebrate the little things. It's taken 2 years and 10 months now to get back some of those little things. 

We recently tried taking Liam swimming. We knew he loved water because he never wanted his baths and showers to end but we weren't sure how a pool would go over with our little lamb. 

Turns out he LOVES the pool. As of Friday he's been swimming 3 times. We only have two issues:

1) Liam has no fear!!

2) Liam's stoma isn't too fond of the chlorine water. He's good for about an hour and a half at max before his stoma gets seriously angry red and starts bleeding. After this we spend the whole day trying to keep him from pulling out his tube. Neosporin helps. This is an issue that I will be bringing up to his pediatrician and his GI at the next visits. 

Besides those issues, Liam is a guppy when he hits water. His natural instinct when he hits water and his feet don't immediately touch bottom is to kick his legs! I am very very happy about that. 

At the pool at our gym there is a kiddy side where the deepth ranges from a few inches to 2 feet. There's also a frog slide. Liam climbs up the slide on his own then slides down into my waiting arms. I let his body get halfway submerged and even then his legs just kick as fast as he can. 

I figure this is really great excersize to strengthen his weak little legs. Since we started taking him to swim he has slowly tanned. He's not dark by all means but a shade or two darker than ghostly pale. It's a bit strange seeing some color on his for in the past he's never been allowed outside long enough to tan due to allergies or he was always stuck in a hospital room. 

Was our pediatrician right when he said he thinks this is our year? That things would be different from here on out? (This was said in December)

Honestly? I believe so. 

He's eating.

He's active.

He doesn't get sick often. 

We can truely enjoy him being a little boy now with much less worrying about what could happen. 

The following pictures were taken Thursday (his second trip to the pool). I hope that in these, even though they we're taken at a distance, that you can see how much fun he was having and how much joy it brought me to watch him.