CDH Research Auction

Shooting For Liam us having an auction to raise money for CDH Research. Please go check it out http://www.facebook.com/ShootingForLiam

 

Exhausting Day

PT says Liam needs new inserts. They're different than the others and go up above the ankle. Liam's feet have gotten worse. Now both feet turn out and its the only way he walks now. He can only stand for seconds without support, then his poor feet and legs wobble and he falls. He's not letting it hold him back though. He's stubborn and a fighter, the very traits to why he survived CDH when he wasn't expected too. As of yesterday the walker has been a tool we can no longer use. He can climb out of it, making it too dangerous to use. Running after him all day to keep the pump close to him is exhausting but he sure loves it. He's a pro at climbing onto the couch and has just mastered climbing up onto the recliner than swivles. He's practically unstoppable. 3am this morning his Jtube clogged up and it took me 6 hours to get it unclogged. After which his pump malfunctioned and it took another 6 hours for them to get out to fix it. I had to use a large syringe to bolus feed formula into his stomach because you can't bolus feed into the intestines. I didn't want him to become dehydrated or loose weight.  It was risky feeding him into his stomach because he vommits so much and aspirates. I was able to bolus 1 1/2 oz of formula into his stomach with him tollerating it. I was so relieved when they got the pump working and I started feeds normally. I vented his stomach to prevent the possibility of aspiration. I've been up since 3am and am exhausted. I thought for sure they wouldnt make it out today and I was going to have to bolus feed him all night long, every hour on the hour. Thank you Jesus that was NOT the case!! I feel so blessed for that!

That big syringe is how I was feeding Liam today. I had to push 1 1/2 oz. Could you imagine having to get up through the night every hour on the hour to do that? I couldn't!!

Cousin Kayla came by to visit and kept Liam entertained so that I could clean without having him under my feet.

 

I also got a special delivery of a much needed Pepsi from cousin's Laura and Josh. Thank you for that small miracle because I NEEDED that! It got me through the day without having to pull out my hair.

Although Liam took care of that for my and decided before bedtime that I needed my hair pulled and did his best to pull out a chunck.

What a turkey!

 

God has blessed us so much.

Even in my exhausted state I can recognize the small miracles and answered prayers that occured today and I am so very thankful for them.

<3 p=""> 

Cherubim

I'm at it again. I just can't help it. I love crafts so much and making hair bows and jewelry is a passion for me. I re-opened my boutique, but re-vammped under a new name and page.

 

I opened up an online store: http://cherubim.storenvy.com

As well as a new Facebook page: http://www.facebook.com/ShopCherubim

I offer Facebook only deals, such as flash sales, items not available in the store and FB fans only discount codes.

Creating things is a stress relieve for me as well as a way to bring in extra income to help out with Liam's needs. He seems to have new needs popping up all the time. Please take a few minutes and go like my FB page.

 

CDH Awareness Bow (Large)

 

MITO Awareness Bow (Med)

 

I can make awareness bows for all causes. I offer Large sized bows ($12) and Medium sized bows ($8). You can have more bling added for an additional charge as well as the option to get a matching headband. This offer is only available through FB.

 

St Patty's Day is fastly approaching:

 

 

 

 

And Spring is practically here:

 

 

 

 

 

 

S4L Auction for CDH Research

We're in the process of putting together a auction to raise money for CDH Research. ALL proceedes from this auction will be donated to Breath Of Hope for Research. We are currently looking for donations for this auction. If you are willing to donate please contact us on our Facebook Page http://www.facebook.com/ShootingForLiam

Now for a sneak peak at whats going to be in the auction and the vendors who have donated!!

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Cecile with UpperCase Living has donated a beautiful frame that is sure to brighten up your home for Spring. Please go Like her Facebook Page to show her love for helping us raise money for CDH Research as well as help us spread awareness by creating some awesome CDH UpperCase Living Items. http://www.facebook.com/UppercaseLivingByCecile



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Megan Hansen, A Independant Consultant for Sentsy has donated 6 Baby Scentsy Buddys. Please visit her Consultant page if your interested in purchasing Scentsy products
https://meganhansen.scentsy.us

All baby Scentsy Buddies come with 1 scent and will be sent to you directly from the Scentsy Warehouse. These are a $20 value.

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Megan at Miss Bella's Closet has donated $150 worth of Gift Certificate's. 2 $25 gift certificates and 2 $50. Please go like her Facebook Page to tell her thank you for helping us raise CDH Awareness and money for CDH Research http://www.facebook.com/MissBellasCloset

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Remember, the money raised goes to CDH Research so please bid with your hearts <3 p="">

Sensory Fun In The Sun

We had a decent day today so liam got a chance to enjoy fresh air, sunshine and grass. We also decided to work on some of his sensory issues so he got to play with dry uncooked rice. I poured a small bag of rice into a small basin then let him just feel it. At first he was aprihensive. But quickly took a liking to how it felt to let it run through his fingers and fall back down. The we introduced a small cup and worked on getting him to put the rice into the cup. He did wonderful. And both kids had a blast. In. Few days I'm sure to see rue plants sprout up into front yard lol

Day of Clinics

Liam had 3 clinics today at Children's hospital. We started the morning off with an upper GI. Which the barium turned his poo white lol. Then on to pulmonologist. It was a quick visit. They're happy with how he's doing and are ok with the asthma attacks. They said they didn't deny his pulmacort refill and have us refills. Going to discuss taking him off the Diurell. Seems the pulmonologist are butting heads with each other. Surgery clinic went ok. They want to do a gastric emptying study because of the on again off again vommiting. She said if its too slow shell have to go on and open up where the stomach meets the intestines. She doesn't want to touch on redoing the Nissan because his spleen is attached to the diaphragm with scar tissue. She said because of that she wouldn't be able to do it laparoscopicly that she's have to open him completely and she doesn't want to do that because she doesn't think he'd heal right. Justin and I don't really see eye to eye. He feels Liam should be left alone and so what if he vommits. He keeps saying the whole point it to get the feeding tube out but doesn't understand that if his stomach isn't emptying than we can't get him off the tube and he will refuse to eat. Me I just want a healthy tubeless baby that can go out in public, crawl around the house without having to follow him around with the tube. Anyhow liam did good today and is now resting.