Amazing fantabulous news

I have HUGE news. Super duper fantabulous news. 

Liam went to the GI today and his weight gain was confirmed!! AND even better we are lowering his night feed to allow him to get hungrier so he will eat more during the day. AND the most fantabulous of all: He gets to take daytime boluses via MOUTH!!! NO TUBIE (unless he refuses to drink it) she gave me pediasure to try and if he likes it she will write the script to change him over. How many likes can we get for that!! I could cry right now. Just last week I didn't think we would get to this point ever and yet here we are. It's a miracle!! I'm not counting my chickens before their hatch all. Just to hear those words is amazing. Things really do get better when you least expect it!! #cdh #itgetsbetter #gtube #lightattheendofthetunnel 

{below is a picture of Liam who fell asleep eating lunch yesterday. He got so full me conked out. This images touches my heart so much because because it was the first time he had eaten so much and gotten so full it made him sleepy. Usually it takes a bolus to do this. I am so overwhelmed with emotion right now.}

Shedding Light

This article is so very true. Parents of a special needs child (sometimes even whole families) are exhausted almost all the time, mentally and physically and emotionally. Parents of a SN child know more about their child's diagnoses than even the doctors. I have done so much research on Liam's diagnosis than I can even begin to explain to you. Every month or so I re-research everything on the off chance there is new information. SN parents minds are always busy. I know mine is. "What time does Liam need a time feed?" "When is his next dose of meds or breathing treatment?" "What PT aspect do I focus on today?" "What appointments does he have today or comming up this week?" It's never ending. My brain is always consumed with thought on what my son needs. It is so consumed I forget things for myself. Since last Friday I've missed two doctor appointments for myself. Pretty important appointment to get results of an ultrasound and X-ray I had. I forget to call my friends and family back. If it has nothing to do with Liam's SN I forget to do it. He is the most cared for person in this house. And I know that it's not always fair. But it's what it is. The most important one to be (yes even more than being exhausted) is that SN parents are lonely. It's a very lonely journey. I went through 2 years and 9 months so far (that's how old Liam is) without having anyone to talk to. No one wanted to be around and see my son so sick. I understand they didn't want to experience that but did I want to experience that? And did anyone once think how it was for me to sit alone in NICU or any other hospital stay? Did anyone think about the phycological damage it did to me to want my son almost die on many occasions or to have him turn blue the very first time I held him because he wasn't getting enough oxygen? Nope. It never crossed anyone's mind. I'm not whining and complaining but sharing a truth that is so taboo to so many out there. This is the life. My life. Liam's life. I'm shedding more light on this article by sharing my thought, feelings and experiences. The only constant through all this was Liam. He was the only one always there but he was the one who was always sick. I would sit in his hospital room for hours when he's sleep and just stare out the window wondering "why us?" And "why do I have to do this alone?" That hurt almost as much as watching Liam fight for life. Being a special need mom I smile to hide the pain. No one wants to see you depressed, exhausted, or know anything about this. We have more bad nights that someone with a newborn. Emotional we can be unstable. I hold it together with my fake smile daily because when you can't you get criticized. You wear sweatpants out in public to pick up your older child from school, don't have the energy to put on enough make to cover the dark circles under your eyes and the world comes crashing down on you. This is life. Real life. http://m.voices.yahoo.com/5-things-know-parents-children-special-11493864.html

#specialneeds #parent #kid #mom #cdh #chroniclungdisease #gtube #tubefed #failuretothrive #gastroparises #life 

      {photo of Liam today in the car. He took his shoe and sock off and put all his toes in his mouth. Why? Because he was bored waiting for sister to get out of school. This is life.}

All The Pretty Little Horses

In jumior high we sung this song in choir called "All the pretty little horses". It talked about going to sleep and dreaming. After the last 24 hours thats all I want to do!

{picture of Liam and I at Urgent Care}

The last 24 hours have been a whirlwind. I forgot about my appointment for my back, had to take Lanie to Urgent care, had a LONG night and woke up with a very sore back, had to take Liam to urgent care, make several calls, fills several scripts at several pharmacies.

Can today be over with?

Turns out Lanie has a yeist infection. Shes been prone to them since she was a baby. She doesn't do baths, only showers but thats mainly because we only have a shower at our house. Cream for 7 days and shes good to go but has to drink more water, go to the bathroom more often and wipe better.

Liam has been in lots of pain all day long. I texted his pedi and under his advice took Liam to urgent care. Liam has a swollen urethral. We left urgent care with little info on this. The one peice of paper they gave only said what it was not how to treat. I broke down and texted the pedi back as well as gave Liam some Motrin. Pedi said to put neosporin on it twice daily for 7 days. Thank goodness for something to help this little lamb.

Me? I have a massive headache and Im miserable. My kids are miserable. Thats just what today is. I did however find it a blessing that Liam was actually able to go to urgent care for something considering in the past it was either to the pedi or straight to Children's ER. I didn't get any coffee today but I did find popcorn chicken in he freezer so had that and some buffallo sauce. Also Justin did the dishes. See today had some perks to it.

On another good note, today is day 3 no soda!! My headache is not a caffine headache but a stress headache since I'm stressed to the max. The stress caused a few panic attacks today but they were small. More little blessings. I can see the blessings laid out before me and I'll probably feel more greatefull for them tomarrow but today I'm using them to hang on to a thread of hope to just get through today.

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Turning Of The Tides

We may be getting our hopes up here BUT we think we are at a crossroads here with Liam and oral eating. It's a turning of the tides. A huge step. 

Liam hasn't been tolerating his continuos for about a week now. I've tried lowering the calorie content and lowering the rate and it hasn't worked. He wakes up screaming in pain and this continues until I stop the feed. After the feed stops he sleeps without waking up at all. 

I tried Milk of magnesia in hopes that it would calm his stomach but it did nothing. I tried Motrin for pain but it only did so much. 

The last couple of days Liam has been making up the calories by eating them! Yes folks I said EATING!! 

So Liam hasn't been gaining it loosing any weight on his formula feeds. I am extremely curious to see if he gains weight eating. I've been packing his food full of calories where I can. Let me share with you what Liam ate yesterday:

(Pic from Saturdays breakfast because I could find Sundays breakfast pic. Sat breakfast was home style hashbrowns eggs and biscuits and gravy)

Sundays breakfast was eggs, sausage, pancakes and syrup. 

When I make his scrambles eggs I add lots of butter. Same for the potatoes. It adds extra calories where I need it to be added and I noticed he eats more when I use lots of butter. 

For snack he ate an entire package of fruit snacks. That's 80 calories in that one sitting. I discovered strapping him I to the high chair he was more. 

Before dinner he wanted apple suace. He ate all this apple suace and a few peices of cereal. 

For dinner we went to Casa Grande. Liam ate lots of chips. I know I gave him 5 and I'm sure his uncle, aunt, grandma, papa, and cousins gave him more. He also ate a French fry, the cheese off 4 tacos (everyone is always more than willing to share their food with him knowing he needs to eat), some taco meat and a few bites of beans. He also tried cutting his meat and cheese. It was the first time he held a knife and I was shocked he knew what to do with it. 

After dinner we had desert at basken Robbins. I shared my ice cream with him. It was called tax crunch and had lots of chocolate in it. He ate 15 half spoon fulls. Every time he asked for more I was more than willing to oblige. 

As you can see yesterday Liam ate ALOT.  I am so proud of him and am praying and hoping that he has gained weight eating and that maybe we can start discussing what to do next with his GI. I know it's always 1 step forward and 2 steps back but still just watching Liam eat brings me joy. 

10 Ways to Save Money with Your baby

When I saw the heading I thought "hey this will be interesting" but quickly realized it was nothing like I expected. Instead if/when I create a graphic it'll be titled "10 tips to save money for your baby". It will read:

1) warm baby wipes are nice during the winter months and baby will fight diaper changes less BUT you don't need an expensive wipey warmer, a microwave will so a decent job and won't dry out your wipes. 

2) you can save yourself money by bathing your baby in the sink. Its easier on your back and you don't have to store it. The do have little foldable lounge seats you can put in the sink that work amazing and aren't expensive. 

3) bibs are more for wiping off babies face or used as teething devices than to protect clothes from vomit or food droppings but still come in very handy. 

4) burp clothes are basically hand towels but you can buy hand towels cheaper. Hand towels also work better than burp clothes any day. 

5) don't waste your money on an expensive changing table. It'll be used more for storage than to change  babies diaper. I know we hardly used ours at all. 

6) the infant swing wasn't used as much as the vibrating bouncer. The bouncer was a life saver for us especially when baby had colic. Swaddle baby then put in the bouncer on vibrate and watch the magic happen. Bouncers were the only reason I got any sleep at all. 

7) fancy baby clothes are a waste of money. They get stained quickly and are usually uncomfortable. Onsies were the key to a happy baby and happy mommy. For the first few months all my kids wore were onesies and socks. Even on winter months because they loved being swaddled and would sweat in anything else. 

8) you could go out and spend a fortune on cabinet locks but a hair tie works just as well. On cabinets with handles we wrap the tie around one side then loop several times around another topknots tight enough. Works like a charm. 

9) an infant washcloth is usually thinner and smaller than a normal washcloth. It also cost a lot more. Normal wash clothes work better so why waste money on baby ones. 

10) brand name diapers aren't the best just because it says "huggies" or "pampers" doesn't mean their the best. I use target brand Up and Up and they work better for my little ones than the name brand. 

Acceptance

We must learn to accept the past before we can move on to the future. 

Acceptance does not mean forgetting or even forgiving. Just coming to terms with what has happened, admitting that "yes this did happen". 

Have I accepted our past that Liam was born with CDH and our journey has been a long hard and horrible road? Honestly and truthfully? Yes. I have come to terms with the reality that which is. I accept that it happen. And in accepting it I feel free to talk about what happened. To share my feelings verbally and truthfully admit it all. 

Yes it happened. My son was born with CDH. He almost died many times. He wasn't expected to survive and his doctors are baffled he did. Going through all that hurt more than anything I've ever experienced and it still brings tears to my eyes. My heart and soul felt shadddered. I never thought they'd be able to be mended but 2 years and 9 1/2 months later I am mending. Instead of feeling shadddered and broken beyond repair, I feel as if I've been stitched together. Still sore and healing but mending none the less. 

It's hard to put into words exactly what it feels like to be at this point. The pain is still there but lessened in severity. I feel free-er. Able to breathe easier. When I look at my son my brain doesn't automatically register the pain of our journey and memories of NICU. No instead sometimes my brain just sees a normal boy standing there, forgetting for a moment that we were ever affected by CDH. 

I'm not sure when I got to this point but it seems to have tipped my world on it's axis. Learning to adjust to a little boy who has everyday normal issues like getting into mischief and telling me no is a strange concept after everything we've endured. I can't pin point the day my brain finally said "we're good". I know it's a slow process but faith is key to it all. 

In the last week I've had less anxiety attacks and more laughs. I haven't gotten anymore sleep than I already had but things seem so much better. 

I'm writing this all because I remember when I was desperate for info on CDH and how long all the "bad stuff" would last. There wasn't anyone's journey or advice to be found anywhere. So now I offer mine. 

IT GETS BETTER!!

I can't give you a timeline because everyone heals on their own time. Each CDH journey is different so it's probably accurate to say every healing period is different. We all need our time to grieve and there is no timeline to greave. 

I look back on our journey and yea I am a bit sad but I can also rejoice that I have a purpose in life and one is to spread awareness. 

Rejoice today because tomarrow might never come!!

(Forever Love written by me)

My dear boy,

The son I always wanted,

You may not be what expected,

But the best gifts are surprises. 

You kept me on my toes,

Gave me a reason when I needed it. 

When I look into your eyes,

All I see is endless love for eternity. 

You were worth the wait my love,

Every pain and heart break.

For you I would do anything,

Hand you the world if I could. 

Because of you 

I am not afraid. 

Forever will I love you sweet

Forever will you be my miracle. 

❤️❤️❤️

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 

Just keep swimming

I ran across a pic that's floating around Facebook today. I laughed the. Realized how very true it is. I've been cleaning the house daily and as soon as I get one room done and turn my back it's an absolute mess again. 

It's been an absolute nightmare cleaning with everything else I have to do. With  a small child who has a lot of needs, medical and otherwise and a kid in Kindegarten who is still trying to learn to pick up after herself my hands are absolute full. Every time I go to start one chore it's always "mommy I need this" and "mommy I need that" and what happens? The chore is yet again delayed.  Sigh. That's life. One day I tell myself. One day the kids will be old enough to help out and clean up their own messes. At least every mother hopes for that. 

I find myself saying this over and over in my head on those days that just seem the worst:

"Just keep swimming Just keep swimming" 

Thank you Dory for the inspiration to keep up the hard work. 

It's fiting this graphic quotes Dory. 

Giveaway

Fellow mommies, you like gifts right? Being showered with pretty things? Especially at Mother's Day right? I know I do. I don't have any luck myself winning contest but I sure end up hosting them or just plain giving things away. So come on over to my Facebook page and enter to win a free charm locket for Mother's Day. 

http://www.facebook.com/ShopCherubim

And don't forget to check out this blogs FB page http://www.facebook.com/MommyConfessionalinmyshoes

Choose Your Battles

Having children has taught me to pick my battles. Especially with Liam. Do I fight him when he only wants to eat Doritos or do I rejoice in the fact that Atleast he's eating something? It's not worth the fight to say "no you can't eat that" because it defeats the purpose of getting him to eat. 

Do I let Lanie wear mix matched socks or fight with her to find a matching pair? Fighting with her only causes emotional distress for both of us and who cares if her socks don't match when you can't see them anyway. 

#makeitcount #chooseyourbattles #cdh #cdhawareness #chroniclungdisease #asthma #gtube #tubie #spoonie #gastroparesis #malrotatedstomach #biotinidasedefficeincy #chronicpain #makingthebestoflife

A new view

For the first time in years I went out with friends. For the first time in years I have friends who want to be around. After Liam was born with CDH all my so-called friends stopped coming around. Watching Liam and I go through all we did was too much for them to handle. They never stopped to think about how I felt having to watch my son struggle daily or what it was like to live out of a suitcase at the hospital 90% of the first two years. But now I have a few girls willing to stick around through it all and give me emotional support when needed. Last night we celebrated "H"s graduation from cosmetology school then we all went to dinner. We had a lot of laughs, good food and a few drinks. Everyone who knows me knows I stopped drinking because I need to stay alert for Liam band if I do drink I never get drunk. I was able to loosen up and have a few and still be up all night with Liam and up this morning no problems. I am happier today for it. This morning a cooked a big breakfast and now were working on Liam's PT and thinking of going to the gym. It's amazing how much better life seems when you have a support team behind you. 

A new view

For the first time in years I went out with friends. For the first time in years I have friends who want to be around. After Liam was born with CDH all my so-called friends stopped coming around. Watching Liam and I go through all we did was too much for them to handle. They never stopped to think about how I felt having to watch my son struggle daily or what it was like to live out of a suitcase at the hospital 90% of the first two years. But now I have a few girls willing to stick around through it all and give me emotional support when needed. Last night we celebrated "H"s graduation from cosmetology school then we all went to dinner. We had a lot of laughs, good food and a few drinks. Everyone who knows me knows I stopped drinking because I need to stay alert for Liam band if I do drink I never get drunk. I was able to loosen up and have a few and still be up all night with Liam and up this morning no problems. I am happier today for it. This morning a cooked a big breakfast and now were working on Liam's PT and thinking of going to the gym. It's amazing how much better life seems when you have a support team behind you. 

Minus Sugar Coating

I read a blog post earlier today that just hit home. This mom writes her blog daily, most days you see many post pop up (she has a blog and a Facebook page for her blog). All her post are real. She doesn't try to sugar coat her life with 2 autistic daughters. She is who she is no matter if you like her or not. That's everything I've always strived for with my blog. Keep it real and don't sugar coat it. Today's post was exactly about that. She called out another blog written by a perfect mom with perfect kids and their entire world was supposedly perfect. Well she called BS on it. It got me thinking. 

Admitedly I have sugar coated events in the past. I've claimed things such as a hospital stay being not that bad or Liam's condition being better than it was or even that I was handling it all better than I truely was. What's fair in that? If I sugar coat it not only am I lieing to myself but I'm not properly spreading awareness. 

I know I've done this in the past to try and keep myself strong and to just make it through the day but it was unfair to those out there trying to get true info on the day to day life of a child with CDH or chronic lung disease or failure to thrive or any one of his many other complex medical issues. 

The truth is everyday is hard. Some days harder than others. After awhile you adapt and your outlook on what's hard and what's not changes. One day your upset and freaking out because you have to give your child breathing treatments every 4 hours daily and some time passes and it seems so trivial that you don't even think about it you just do it because it's routine. Your routine (whatever it is) becomes your lifesaver in this stormy ocean. You get used to it and it seems like the storm calms when in all reality nothing changed but your outlook. When your routine has to be changed it feels like your back in that storm desperately gripping for that flotation device to have it just slip from your hands until finally your able to grab hold and adapt again just to loose grip yet again. 

That's what this life feels like. I've learned if you can't find the light or some semblance of Hope or something to be happy about you'll end up drowning in it. So yes there are times I'm trying to grasp onto Hope and happiness and it's just barely out of my hands. 

In the past I've wanted everything to be ok that I would make this all seem like it was no big deal. 

Example: having to put Liam's gtube back in when it fell out in public and I didn't have the tool. On the outside I was calm and my brain just reacted to do what had to be done. I freaked out a bit on the inside. But after having to do this for the hundredth millionth time it's just another day in our life. 

It's not easy having a child with complex medical issues. It doesn't get easier but you adapt to it so it seems like it gets easier. 

Plain in simple: THIS IS LIFE. It is what it is. 

Every mommy needs a survival kit to get through it all. Mine includes: coffee and tea to combat the exhaustion, concealer to cover up the dark circles under my eyes and something glittery because glitter or bling makes me happy. 

Iced coffee: a staple to any morning following a sleepless night 

My bling: top one is for our CDH journey. Has Liam's pic in it and a CDH awareness ribbon charm. Middle: says inspire and has a camera and Starbucks charm. I love my coffee and photography.  And the bottom and  for my grandma and dad. I started selling Lockets so of course I had to make myself a few! 

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For check out my charm Lockets for sale go to http://www.facebook.com/ShooCherubim 

Gastropharisis

Liam's been diagnosed for since he was a few months old with Gastropareses. Like with all things I normally re-research everything Liam's been diagnosed with to  see if any new info has popped up. Lately his gastropharisis has been on my. It most likely stems from my frustration that Liam will only take a few bites of food at a time before being done. 

I got my info from the Mayo Clinic website during this search. 

What is Gastroparesis? How does it affect you? 

It's not always clear why someone has gastrophareses but in many it's believes to be caused when the vagus nerve is damaged. The vagus nerve controls the stomach muscles and helps manage the digestive tract. It' sends signals to your stomach telling it to contract to push food through. When the vagus nerve is damaged it can't send signals to the stomach. Damage can be caused by disease such as diabetes or abdominal surgery. 

What are the symptoms of gastroparesis?

Vomiting 

Nausea 

Feeling full after just a few bites 

Abdominal bloating

Heartburn or GERD

Changes in blood sugar

Lack of appetite 

Weight loss and malnutrition

There is no cure for gatroparesis. Changes to diet it meds can sometimes help. Gastroparesis can cause complications such as:

Bacterial growth in the stomach due to food sitting there. 

Food left in the stomach can harden causing a hard mass called a bezoar. These can be life threatening. 

Blood sugar fluctuations. Poor blood sugar makes gastroparesis worse. 

In Liam's came his vagus nerve was damaged. The doctors aren't sure if it was due to his birth defect CDH or the repair surgery. They are however sure the nerve was damaged. Liam recently in the last 6 months was weined of his mobility med, erythromycin and takes his acid reflux (GERD) meds as needed. 

Liam will take only a few small bites of food at a time. Some days more than others. He has his ups and downs. He can be fine for a few days, weeks or months then get hit with severe vomiting symptoms and have to be taken to ER for fluids and IV zofran. He has random sparatic stomach due to his gastroparesis. I'm still "new" to this so I'm unsure what the future holds as far as eating is concerned. I've had little contact with those who've had gastroparesis for years and little idea on how if this only gets worse over time or if in some cases it does indeed get better. 

Considering there is no cure I am sure that Liam will not be miraculously cured of gastroparesis anytime soon. The good news is that after changing his feeding tube from a Mickey to an AMT mini one ballon less his episodes of vomiting have been cut by 90%. 

I am reveling in the fact that this time last year we made the switch in tubes and it's made the world of a difference. He went 8 months with NO hospital stay! I tiredly believe it's because we switched tubes because it was an instant change in him. This time last year Liam started eating and showing interest in foods. It was a slow and steady start (although at the time it felt he was diving in head first and eating as if it was an everyday thing for him). That was my small miracle. 

People live with gastroparesis everyday, some their entire lives with minimal flare ups and episodes. It's manageable. I may now know if or when Liam will decide to eat and ditch the feeding tube but I do know he can live a fairly normal life. And for a mom of a special needs child, fairly normal is perfect! ❤️❤️❤️

"I may have Gastroparesis but Gastroparesis does NOT have me"

Red Blood Moon

Starting tonight we be experiencing a series of 4 of these. This is a phenomenon that happens only once every 500 years! That's just incredible. Not everyone gets to experience this in their life time. Our great great great grandparents never had a chance to see this. It's definitely a must see. 

Four blood moons will occur roughly about every 6 months.

April 15, 2014

October 8, 2014

April 4, 2015

September 28, 2015

NASA says there are two lunar eclipses each year. Some not even noticeable. This event of the red blood moon series is called a tetrad and the most unique aspect is that it will be visible to ALL of the United States. 

According to NASA there's been an increase of lunar eclipses in the 21st century. It's said that in the 20th century there was a 300 year period where no lunar eclipses occurred. 

Think about it like this. Sir Isaac Newton, Mozart, Queen Anne, George Washington, Nepoleon or Abrahan Lincoln never had the chance to see one. 

There are several "prophecies" that some attribute to this rare event:

Tonight blood moon is in time with Jewish holiday Passover. Passover commemorates the ancient Israelites escape from slavery in Egypt. 

In Joel 2:30-31 it says "and I will show wonders in the heavens...the sun shall be turned into darkness and the moon into blood before the comming of the great and awesome day of The Lord"

Acts 2:20(KJV) "the sun shall be turned into darkness and the moon into blood, before the great and notable day of The Lord come"

The blood red moon has landed on the first day of Passover and Sukkot back to back 7 times since 1AD with the 8th being this time. 

NASA says the next tetrad will be in 2032. This is the increase NASA was talking about. It's said that the moon will be "at it's bloodiest" at 3:07am. 

Pagan or Wicca belief states that the blood red moon is the best time for divine growth. During which the cover between our atmosphere and the spirit world are it it's shrillest. In paganism a blood moon opens a gateway into the heavens as the earth, sun and moon align. For a brief moment in time we can commune with the spirt world and other realms. 

It seems every religion has a phrophecy that is associated with the red blood moon. Christians believe it's the comming of The Lord. Wiccans or pagans believe it's an opening to the heavens. 

Now weather or not the Blood Moon really had a religious meaning or not I'm not sure. I do know that it's a rare event that I don't want to miss. The world has beauty, religious or not.

Facts about the blood moon:

The red hue of tonight moon happens when the moon goes into the complete shade of the earths atmosphere. The hue comming from earths atmosphere. 

NASA claims the world isn't ending because of the blood moon. 

I don't know about you but I will be outside at midnight to see the phenomenon of the blood moon. I've always astronomy. 

Put it in a pouch

Some days are just so hard when it comes to getting Liam to eat by mouth. The last few days have been the hardest and most frustrating. Liam has been raiding his food cabinet bringing me his favorite pouches of food saying "eat eat more please". I open the pouch and he takes ONE bite and walks away refusing to eat anymore. I'm trying to wrap my brain around it but can't figure it out. 

When I discovered the pouches Liam was in heaven. He would eat most the pouch in one sitting. Only problem was I've only found then in fruit and fruit/vegi mix. Not high calorie at all and no pastas meats and whatnot. 

So what did I decide to do? Go buy pouches I could fill with my own blends. Why happens after I stocked up on store bought food pouches and refillable pouches? Liam decides to eat out of a bowl again. 

Yep. Mm hmm. What a 'slap my forehead' moment. I think the fact that I invested the money in something that was so successful to have him decide he was over it is the most frustrating part. I was my son to thrive and experience all the wonderful foods out there and to see him missing out is hard. 

We've worked so hard at eating and we always get set behind due to many different reasons including Liam just deciding he was over the eating thing. Praying for a breakthrough. 

Tube Feeding On The Go

Today Liam and I are at Children's Hospital for pulmonology clinic. 

Tube feeding on the go. Not much difference than at home bolus feeds except you waste an ounce of formula because you can't refrigerate it. Washed everything out in the sink and were good to go. I put some apple sauce in with his formula to give him more fruits. He does better when he gets regular food and some days he doesn't want to eat so I add blended or purred foods to his formula. #bolusfeeding #tubefeedingonthego #blendeddiet #gtube #failuretothrive #tubie #spoonie #cdh #chroniclungdisease #asthma #gastropharisis 

And then as I just sat here waiting I made these:

Thinking of Lanie Bug and how upset she gets every time Liam and I have to leave to the hospital. I know this will put a smile on her face. I tell her she will always be in my heart no matter how far apart we are. 

Spring Clean Plan

So I'm not sure why I was in a funk the past few weeks but I started feeling better the last three days. Today was the best by far. I didn't over react to anything and had less anxiety attacks. I was happy. Actually happy. Or had happy moments. Even though my back was hurting it seemed like it wasn't as bad as the last month. I had way more energy today than I've had in months. I was able to re-arrange Liam's room, take the crib out, get the toddler bed in and finish re-arranging everything. It's not 100% but if my days stay this good it will be in no time. Being able to accomplish that makes me very happy. We have a plan on continuing this and doing a spring clean and purge of the entire house. Tomorrow after church I'll be finishing Liam's room and purging stuff out of our bedroom. I plan on getting rid of a bunch of clothes and other things. Im thinking if we go the minimalist living (where we don't have a lot of crud out in the open or an overwhelming amount of stuff) that it will help my anxiety. Too much clutter can be bad so I want it thinned out. My hope is that by the time we're done purging the house that there won't be enough to make huge messes. Besides kids toys but even those will be thinned out. If we have less clothes the laundry will get done more frequently as well as not get to be so backed up. Who needs 20 pairs of jeans or 100 tshirts anyway? (Just random numbers I threw out there). I'm looking at all the stuff and seeing so much that we just don't use...ever. So why keep it? Why not clear out the space. I believe it'll make all our lives better. Less arguing over messes and things not put away because things will have a true home. I will be able to see walls and not shelves lined up almost the the ceiling backed with boxes and just plain crap. Well I can hope and pray this plan works anyway 😉

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

Up All Night

Let's face it. The morning after a sleepless night just plain sucks. Thanks to little lamb and absolutely no help because let's face it I'm superwoman (I wish!) I got very little sleep. Liam was up at 2am and wouldn't go back to sleep so we ended up camped out in the living room watching cartoons. Every 10 min or so he'd hand me the remote to change it and if I didn't he screamed at the top of his very very loud lungs. What a lovely way to spend the night. Liam fell asleep for about 20 min until I tried to move him back to his bed. Boy was that a mistake at 6am. He threw a fit and we had to return back to the living room. I being completely exhausted had an outburst of anger and complete despair. I told my self out loud FML. Then was told by hubby to take a chill pill. The same man who slept threw the entire night of crying yet hears my little outburst. Hmm. I took the high road and just walked away. If I had said something it would have been cruel and mean and I somehow mustered the strength and will power to just walk away. I am praying that today will be better even though I am exhausted. I have to "suck it up" and make it through Brightstart and PT and everything else the world has planned for me. No crawling under a rock today. 

#exhausted #cdh #cdhawareness #cdhsucks #upallnight #angry #justleavemebe #iwannabehappytoo

http://www.facebook.com/MommyConfessionalinmyshoes

Staying Connected

Today it occurred to me that our lives are so full of random moments that is like to share with you but just don't make a good blog post. So I decided to start a Facebook page where you can see all the randomness my family really is. If you have a Facebook account, come on and join the random fun. If you don't, maybe you should get one ;) 

http://www.facebook.com/MommyConfessionalinmyshoes

No Dinner No Snacks

What do you do when you have a picky eater? This one animatedly refused to eat tonight's dinner of lasagna. She does this frequently when she just wants something else even if she likes what I cooked. I told her if she didn't eat dinner she wouldn't get snacks tomarrow. So what was the result? To lay her head down and fall asleep instead. Guess you can't fight that. #nodinnernosnacks #sleepinginsteadofeating #tired #mommyconfessional #ourlifewithcdh #makingitwork

National Siblings Day

Today it's national siblings day. I normally would let this day pass without a word since in previous years didn't have a relationship with any of my siblings. But this year is different. 

This year I can celebrate having my brother on my dad's side in my life finally after all these years. Thanks to Facebook getting rid of the "don't let anyone search for me" setting. Within days of that setting disappearing my Grandmother found me and now I have a whole slew of family including one really awesome brother. We talk to each other like we've known each other our while lives. It's pretty amazing. I am so thankful for my brother. 

I can also celebrate Lanie and Liam's siblingship. They live each other. Lanie is always teaching Liam new things, reading to him and helping him out. Of course they get into trouble together too but that's part of it. These two are amazing  and I pray they continue to  e close their entire lives. 

Lanie reading to Liam about numbers and counting. 

Lanie and Liam enjoying the slide 

Liam would follow her anywhere. 

"Goodnight" 

He always greets her with a hug when she gets outta school. 

Bearable Bears UK

Lanie participated in a contest over at Bearable Bears UK. She won third prize for her teddy bear drawing. Today her prize came in. A stuffed lamb with turquoise ribbon. I thought it was perfect and so did she. She immediately pronounced "I love it! It's the prettiest lamb ever!" So blessed for these moments of pure joy and happiness 

And yesterday both kids got their stuffed buddies in from Bearable Bears UK. They Loved them. Thank you Bearable Bears UK and sponsor 

Bearable Bears UK is a Facebook page that sends stuffed animals to children and siblings going through a medical journey. It's an awesome group of people bringing smiles to so many kids. 

Anxiety PT1

My world feels odd. The anxiety attacks are getting worse. More frequent. I can't even go do simple acts like turn in paperwork without experience an anxiety attack. 

Today I was only going to turn in some paperwork and wasn't supposed to have a wait at all. Just a quick drop off. I waited an hour before they and to take the paperwork from my hands. By the. I was shaking and nervous and upset. I just wanted to hide under a rock or run. I almost did run out of the office. 

Then when I tried to go to the grocery store I checked to make sure I had my card before going in and behold it wasn't in my wallet. I had left it in my other purse. I had to walk back to the car and head home. I was crying before I left the parking spot. I couldn't help it. My anxiety was so high and I didn't know how to handle that. 

It's not something I'm proud of but it's a fact of life. Caused by Liam's traumatic birth, my time in NICU, hospitals, doctors offices and all of Liam's medical needs. After years of just holding it in and trying to just do what needs to be done for him, this is the result. I'm. It complaining by far, just sharing my story so that maybe it'll help others down the road. 

CDH is a horrible horrible thing. It affects everyone involved. As a parent to a baby in NICU you might not see effect on you immediately or even months down the line. Liam is now 2 years and 9 months old (on the 14th) and I'm now dealing with anxiety. 

I was diagnosed with depression and PTSD while Liam was in NICU by a nurse. After Liam got out of NICU I sought help for this. I went to the doc and was again diagnosed as depressed and PTSD. I've been taking meds. Thought everything got better yet suddenly it was worse and anxiety was added. 

I've again taken steps to help this. It's not a fun thing and if let go it can effect you socially as well as emotionally. At times I don't want to leave the house because just thinking about it sends me into an attack. There are days I don't want to get out of bed because just thinking about everything expected of me that day causes an attack. 

I get the shakes. I cry because I can't help it. My heart does weird things during these attacks. It's very scary at times. This is just part of life. Another thing I have to manage and juggle. I don't want to have anxiety. When is over I just think how much worse anxiety is than my depression. It hits out of nowhere sometimes for no reason. I'm always afraid I'm going to have one out of nowhere in the worst time. 

Sometimes I feel like God is messing with me. Saying "ok you passed what I have you (even if by a thread) so I'm going to add this. Good luck". 

Anxiety makes me feel weak and useless. Last night I went in to clean Liam's room and put all his medical supplies away. 5 minutes in and my anxiety kicked in. I felt like it was all too much. I was able to recognize that I was getting over whelmed so I stood there, closed my eyes and took a few deep breathes. I told myself I could do it, that it just seemed like more than there really was. It helped some. I also walked put of the room a few times to "breathe" when I thought I couldn't do it anymore. In the end, I was able to go through all Liam's clothes, box up what he grew out of ( he grew!!!), put away all medical supply shipments and put away toys. I had actually done more than I had intended on doing. I am proud of myself for pushing forward and working through the anxiety to do. 

My next goal is to go though my own clothes and stuff to get rid of things and organize. I figure if I start working on my anxiety with home things I can start pushing myself for public things like grocery shopping without getting anxious about standing in long lines. I can do this if I just try real hard. 

#anxietysucks #justbreathe #wannagetoverit #wannamakeitbetter

The box of clothes that Liam grew out of will be donated to another child who can use them :)

4/7/14 5:26am

It's one of those nights where I'm even more sleep deprived than normal so more emotional. Really it's been like this for three weeks now. Something has to give. 

Did you know it's a proven scientific fact that those who don't get enough sleep loose brain cells resulting in irreversible brain damage? It affected your memory. Having trouble finding your keys or phone or glasses? Forgot you had then in your hand or in your pocket or on your head? Yep I do! Why? Because I'm sleep deprived and am suffering the ill effects of it. Lame. 

Tonight's trigger is Liam's Gtube. I am so frustrated with feeding tubes and the fact that it's always causing trouble. It's infected again and causing Liam pain. It's just not fair. The poor kid can't catch a break...and I can't catch sleep. (If I had the energy id insert a hysterical laugh here) ;)

He woke up in pain at 2am. Finally as I'm writing this at 5am, he is snoring on the floor. 

Lately I've been experiencing wanting to just take the damn thing out and let him learn to eat by mouth. (That's my depression, anger, frustration and exhaustion working) Logically it wouldn't work. It would cause more problems. 

I'm working so hard to get him to eat more by mouth. Problem is everything he gets sick he just stops and were back at square one. What worked last time usually won't work this time. He's also pretty much ditch the cuppie for the most part as well. It makes me sad and it makes me angry. 

Why angry? Not angry at Liam but angry at CDH, the reason he has these problems. I find that yes I am Infact angry at God. Why would he let Liam be born with CDH? Why would he allow Liam to continue to suffer and have problems? Why would he allow any baby to be born with CDH? I also find myself thanking God. Thank you for allowing my son to survive when so many other haven't. It's a confusing ordeal. 

I'm angry Liam has to have a feeding tube. I am also thankful that feeding tubes saved his life when he stopped eating. The feeding tubes and feeding pump have been the bane of my exsistance since he got it. It's caused so many sleepless nights and frustration. His stoma has caused him so much pain. And through it all Liam is still failure to thrive and not putting any weight on. He's been 22 pounds since June 2013. No matter how much we pump into him he just doesn't grow. So what's the point to all of this? Being as I am extremely exhausted and sleep deprived I just don't know. Maybe tomarrow I'll remember or figure it out. 

But tonight I hate the thing. If we don't keep his stomach wrapped in an ace bandage the gtube falls out or gets pulled out and we (me me me always me) has to put it back in. The bandage can be uncomfortable. Like tonight because his tube is already hurting, any amount of pressure makes it worse. He cries, makes me wanna cry. It's not helping my anxiety. And I know it's not helping Liam either. 

We (me me me) had to flush hi a mediport again today and he wouldn't stop wiggling and crying (don't blame him). In the middle of it I almost broke down crying myself. An anxiety attack just hit and I almost couldn't do it. I thought to myself how unjust and unfair and crappy this all was. I realized right after these thought ran through my head that I was having an anxiety attack so I took a few breathes and sucked it up. Needless to say his mediport got flushed. 

Life is just one miserable mess after another. Liam can't catch a break from being sick. I can't catch any sleep. Were a miserable pair I tell you. But Atleast we have each other <3 <3 <3

Why

In this day and age I wanna know why it's not accepted to have a child with complex medical problems. Why it's not accepted for a mother (or parent) of a child with complex medical problems to be exhausted or have a bad day. 

I want to know why it's ok for a teacher to use a gate that's not supposed to be opened until the bell rings but two seconds after the gate shuts won't let a child through it. A kindergartener at that. 

Rules are rules the school says. Well if rules are rules then the same rules should apply to the lazy teacher who is just too lazy to walk around every morning like she told my daughter too. 

Lanie walked herself to class a few times until we found out she was getting bullied. Then we went and talked to the school office about it. The situation was never actually resolved except that I'm supposed to walk her to class every day. That doesn't solve the bullying. I had explained that I have a son with complex medical issues and there are times where it's not doable to get him out of the car. I explained how he doesn't need to be exposed to germs, flu/RSV band what not but they didn't bat an eye. Infact they didn't care nor were nice about telling me that I still needed to walk her to class. To be truthfully honest I felt like they were treating me as if I was some POS mom who didn't care about her kid and too lazy to walk her to class. 

The fact of the matter is that if you have a child with medical needs the world looks at you like it's your fault and they treat you like crap. When Liam was on oxygen and 24-7 feeding pump and I would have to take him with me out in public people would give me dirty looks. Gee I'm so sorry if your upset by seeing a baby hooked to oxygen and a feeding tube. Get over it! I live with it every day. And don't look at me like in some druggie who couldn't kick te habit while prego. I don't do drugs and my son isn't a drug baby!

I did everything I was supposed to while pregnant. Took all the right meds, ate all the right foods and yet he was still born sick. There is no known cause of CDH. Nothing I did made Liam be born with CDH. There was no way to prevent it. It wasn't my fault. You shouldn't judge people based of the small snip it's of what you see or hear. 

A child growing a huge fit in the middle of the store and the most everyone will automatically judge the parents as bad. What they don't see is the behind the scenes. They don't know if that child has any medical issues. They don't know if the child is easily over stimulated or has autism or what. And they don't care either. The majority of te world thinks that these kids and issues should be locked behind closed doors and hidden away. 

That's the problem with society. They want it all swept under the carpet instead of spreading awareness band acceptence. 

This all leads back to this mornings incident with Lanie trying to get into the Kindegarten playground. After two weeks of hardly any sleep at all and being up since 3am I am exhausted. Liam is sick. He doesn't need to be out in the weather or out exposed to other viruses. I just couldn't find the energy to get Liam out of the car and walk her all the way to the play yard. I just couldn't do it but does anyone understand. Nope. No one even tries too. 

I don't expect a 6 year old to understand but she understand better than any adult. She was upset the teacher was rude to her this morning but understood why we couldn't just walk to class. She was crying when she walked back to me. I held her until the bell rang then sent her on her way. I watched as the same teacher scolded her again and with slumped shoulders she walked through the gate and to class. I wanted to go run and scoup her up and take her home. We could cuddle on the couch and watch cartoons and cry if we wanted too. Just spend out bad day together. But I couldn't do that. She needs school and needs to find her own way to deal with everything. I can't tell her the right way because different thins work for different people. 

I've explained to her teacher that she is more emotional that most kids but it's because all she went trough since Liam was born. She had to brave mommy being gone, then brave NICU daily, having mom and brother ripped away every time Liam got sick. She's been through a lot. More than any kid should have to experience. I warned her teacher that she gets upset at the littlest things and cries at the drop of a hat because her emotions and stress. So when a teacher makes her cry because she's being mean to Lanie I get furious. 

Why is it not accepted to have a medically complex child or for a mom to be exhausted but it's accepted that a teacher uses double standards and is mean or rude to a child accepted? 

Amazed

Today is one of those days were I'm just reflecting on the miracle Liam is. He's come so far. Liam was never expected to live yet here he is breathing, walking, talking. Why he survived when others didn't ill never understand but will forever be greatfull. 

NICU 2011 post ECMO, post repair surgery. 

Playing his puzzle games 

Morning breathing treatment 

All smiles

Getting ready to pick up sister from school

Breathing treatment this afternoon 

He fell asleep during his treatment. 

(All pics but NICU were taken today)

Liam doesn't let chronic lung disease or tube feeds slow him down. He is a fighter. He loves life. Everything amazes and excites him. It's amazing to see the world through his eyes. 

Health Check

Yesterday I took Liam to his pedi because he kept running a fever, retching, and runny nose. For the first time in Liam's little life we got a "normal" diagnosis. I have never been happier for ear infections! Liam's left ear in full on infected and his right ear was a bit red and irritated. The bad news is that on top of it Liam's left lung has the start of pneumonia. The pedi thinks we caught it in time but of course we can never be 100% percent sure with Liam. 

Last night was a very long sleepless night for Liam's and I. He kept coughing most the night. We were both exhausted this morning. Liam seemed to be doing better today than yesterday. His cough is a little better. He was able to take a 3 hour nap while I went to take care of my own health. 

I went back to DR. "CW" that I saw last week. He was happy I had diagnosed my headaches and migraines as being caused by my back. He was happy the new allergy meds are helping. No they weren't a miracle cure and I'm having allergy issues still but it's better. He said I need PT for my back as well as massage therapy to get those knots worked out. He said it's going to hurt but feel better after and he really feels I need it. 

He did an EKG to check my heart since it's been doing weird stuff. Thankfully my heart is fine. He truly believes I'm having minor anxiety attacks. He thinks I have bad anxiety and after the attack I had last night I believe it. Thankfully my husband was there to calm me down and get me to stop crying. He believes I need help with this so is having me talk to someone there to learn de-stressing techniques as well as figure out if I need meds as well. Whatever makes them stop and gets me better is ok with me. 

Also went for a X-ray of my back. Praying it says something! I just want some answers. Pain is a miserable thing. We retried the ultrasound today. This time he looked at my bladder as well. Good news is that the tech didn't see any cyst! So the cyst are gone but still having some cramping. Atleast they're gone and it's not like it was! Extremely happy about that. 

We're closer to findng out and fixing the pain. Excited about that. 

Target Deals

I also scored at Target today thanks to the Cartwheel app. 

1) soda 12pks were 4 for $10 plus 10% off w/ Cartwheel 

2) the Target brand fruit snacks and granola bars were 5% off w/ cartwheel

3) Doritos were on sale for 2 for $5

4) I bought the 222 ct sz 3 diapers on sale. Reg 34.99 on sale for $30. And cartwheel had an additional 5% off. I paid $28.99

5)Cartwheel offered Mio at 25% off! 

6) Skittles were on sale buy 2 get 1 free. Cartwheel offered an additional 10% off. 

7) Wipes were on sale plus 5% off

8 cartwheel offered 5% off their brand pads. 

These were all things I was going to but anyway. Between sales and cartwheel, I saved a little over $28! 

For me this is huge because I am never lucky enough to catch great sales. 

A steal of a deal

Today I lucked out! I never get great deals but today I was on a roll. I went to Sally's to pick up a couple new gel polish colors and ended up with 2 free polishes!! They we're buy 2 get 1 free. Sally's also had a sale where if you spent $50 you get this retro resort tote bag FREE!! That's was a $29.99 value. I also had a Sally's rewards card and got a cupon for 30% off a purchase at Payless Shoe Source. 

My freebie equalled $50!!! 

(More "steals" in next post)