Alot has happened since I last updated. Everything gets so crazy that I seem to never find time to do so. Liam had his 16th hospital stay. I took him to CHCC on saturday the 2nd because he wasn't tolerating any feeds. It seemed his Jtube feeding were backing up into his stomach so when I vented him it came out the Gtube. On saturday afternoon his feeds were comming out as fast as they were going in. I packed up our things and headed to ER. First they solved the back up problem. Turns out he was seriously constipated. Then after running a bunch of test, the surgeons reviewed them and found the retching vommiting issue. To be more exact, they solved the retching vommiting issue Liam's had for the last 16 months! Turns out the balloon in his mickey button was just too big for his stomach. The balloon would hit the muscle connecting the stomach and intestines and cause the retching and vommiting. It also blocked his stomach from emptying at times. This is the reason he went from a Gtube to a GJtube. It was never caught because the surgeons werent the ones looking all these issues. When our surgeron, Jones, got wind we were there she assigned the team to figure out what was going on because of his complex GI issues. She's been trying to solve his issues, or atleast help them, for a long time now. I am so thankful that she did too or this wouldnt have been cought! Now Liam has a balloonless AMT mini button thats a Gtube!! He's been on gtube feeds for only 9 days now and he's doing excelent! Within 3 hours of them removing the mickey Liam started feeling hunger pains. For the first time in 16 months my son was hungry and wanted to eat!! Since then he's been an eating machine...Well that a bit exagerated. He wants to eat everything and taste everything. He will eat a tablespoon and a half of ranch dressing at one sitting. He loves to like the sauce off pizza, loves cheetos and dorritos. Loves Hersey bars and so much more! If Im eating it he wants to try it. This is a complete different kid. He practices taking bites, though not getting a whole lot into his tummy, but its a wonderful exciting improvement. His OT was sooooo suprised and so thrilled. He still doesnt like liquid but he really like the crunch of things. Last weekend he snuck a decent size peice of tritip off my plate and ate half it on his own. Litterally ate it! Got it into his mouth, chewed it up and swollowed it! Just amazing. God is really looking out for little lamb and everything is happening as his plan. Liam also got his braces!! Theyre like inserts, also called IFO's. Theyve done wonders to help him. He stands more frequently now and is more stable. He still only stands for seconds at a time but thats still amazing. While in the hospital he lost 4 pounds and went down to a mere 20 pounds so we're working hard to get that weight back on.
Lanie has been signed up for kindegarden. Shes so excited. I thought I was ready for this. I had even tried to push Justin into putting her into Pre-K but he never agreed. Now that She's signed up, Im not so sure Im ready for her to be this grown up. Ive missed so much of her growing the last 19 months that I feel we were both gipped. There were a few times I teared up just thinking about her starting school. It took alot not to cry.
I've been working on some projects that Im pretty excited about. S4L's CDH Awareness Balloon release is Saturday March 30th. Im also starting a "pragram" I guess you can call it, that Ive dubbed "Bows 4 Babes". B4B is all about making hair bows and sending them to babies in the NICU and hospital. For my first big job I will be making a batch of bows for Looms Of Love to attach to their hand knitted hats and headbands. I love looms of love. They made these hats and send them to kids on a health journey at no charge. They are making a hat for Liam and since I already had B4B in my head I decided I could help them and help sick girls at the same time by making and donating bows. I will also be making a batch bows for CHCC NICU and UCSF NICU. Its going to cost alot to make all these bows and ship them so it'll take me time but Im super excited. Ill be a vendor at a car show next month as well. We will have a booth for Shooting for Liam to spread CDH Awareness and one to sell my bows and jewelry.
Don't forget CDH Awareness Week is March 25th-31st.
Lanie has been signed up for kindegarden. Shes so excited. I thought I was ready for this. I had even tried to push Justin into putting her into Pre-K but he never agreed. Now that She's signed up, Im not so sure Im ready for her to be this grown up. Ive missed so much of her growing the last 19 months that I feel we were both gipped. There were a few times I teared up just thinking about her starting school. It took alot not to cry.
I've been working on some projects that Im pretty excited about. S4L's CDH Awareness Balloon release is Saturday March 30th. Im also starting a "pragram" I guess you can call it, that Ive dubbed "Bows 4 Babes". B4B is all about making hair bows and sending them to babies in the NICU and hospital. For my first big job I will be making a batch of bows for Looms Of Love to attach to their hand knitted hats and headbands. I love looms of love. They made these hats and send them to kids on a health journey at no charge. They are making a hat for Liam and since I already had B4B in my head I decided I could help them and help sick girls at the same time by making and donating bows. I will also be making a batch bows for CHCC NICU and UCSF NICU. Its going to cost alot to make all these bows and ship them so it'll take me time but Im super excited. Ill be a vendor at a car show next month as well. We will have a booth for Shooting for Liam to spread CDH Awareness and one to sell my bows and jewelry.
Don't forget CDH Awareness Week is March 25th-31st.
Before the tube change
Bright start
Little Lamb has needed extra treatments lately
Two peas in a pod
He tries to walk this way
He loves Chocolate
He thinks Jackal (the dog) is his best friend
<3 p="">
It was midnight and he was still awake. He wasnt feeling good so it was on and off awake and sleep.
He thinks Grandma is funny.
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