Brightstart/Physical Therapy Day

Today Liam had Brightstart and Physical Therapy. They were amazed at home quickly he’s learning and how every week he shocks them with new skills. Today he showed them how fast he can crawl, sho we uses his walker the wrong way to walk around the house, how he travels the furnature and more. The physical thereapist said she was very pleased that the only advice she could give was to put him in high top shoes so he wont walk on his toes. She said he was doing so great that there was nothing she could add to the mix. We just set new goals about a month ago and Liam has already surpassed them. This is what happens when Liam stays healthy and away from the hospital for a few weeks…he thrives!! He’s also had a growth spirt. Just 2 weeks ago we started putting him in size 12 month clothes (he’s 15 1/2 months old) and already he’s growing out of them. He’s getting long and chunky. His belly actually has normal baby chubby rolls! Alot of CDHer’s are skinny and up until the last 2 weeks, Liam was no exception. His body was so small his normal sized head looked too big. He is now looking more porportionate and like a normal baby boy. To this we say… WHOOP WHOOP!!

A Look Back at Last October

 

This time last year we spent our time at Childrens Hospital with Liam. He was admitted for Failure To Thrive, vommiting and not tollerating feeds. He was 3 1/2 months old and had only spend a total of 2 weeks at home. We were scared. Liam ended up staying in through October into early November, a total of 6 weeks straight during this stay. He ended up needing a Nissen Fundoplication and a G-tube. We are so very happy that this year, Liam has NOT been admitted at ALL during the month of October (lets hope it stays that way) and that we are getting to spend Halloween at home, the way it was intended. It's Liam's first Halloween home and we are so very happy for that.

 

 

 

New toys

 

 

 

Liam got a “new” toy today. A lightening McQueen stuffed rocking toy I found a a used kids store, ‘Twice Upon A Time’. I wasn’t sure how well he’d do with it but turns out he isn’t scared. I put him on it, showed him out to rock and he was off. Lanie got a new hat, a cheetah print cat eared hat she picked out, a “new” outfit, and a new ,monster hight dolls. I love being able to spoil my kids now and then. <3 p="p">

And the random things they do keep me laughing. Like Liam crawling into the lid of his mega blocks container and just sitting there. The standing on his head.

A Year Ago Today...

A year ago today, we were sitting in NICU getting ready for another try at excubating Liam. Liam has failed being excubated several times prior to this but we kept faith. We knew that there was a chance he still wouldn't fly but we were prepaired. This was the process, the journey, full of ups and downs.

And today....

Liam spends his days surrounded by those who love him. We never get enough of having him here with us. Even when all the breathing treatments and meds and other needs make me feel exhausted, I look at him and his smile fills my heart with satisfaction and content. His big sister wakes up every morning, goes into his room and tells him 'good morning'. She loves trying to teach him new things and "showing him how to play with his toys".

I also have super GREAT news to announce. Its been exactly..................

  9 WEEKS SINCE LIAMS LAST HOSPITAL STAY!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

This is the longest stent we've ever had him home!!!! Next weeks it'll be 2 1/2 months!!!!! THANK YOU JESUS!!! And thank you everyone who has been praying for our little lamb. We hope that you will continue to keep him in your prayers.

Liam still has his cold but he's doing really good. Our next little journey will be with physical therapy, feeding therapy and OT. He needs alot of prayers and help in these areas.

 

Life with A 1 & 4 year old

Raising a 4 year old and a 1 year old isnt easy. Especially when the 1 year old has so many special needs that take up most of my time and the 4 year old begs for attention by constantly doing things that require me to stop what Im doing to "pay attention". And moving in the midst of Liam turning into a 1 year old and trying to squeeze in time for tea parties and lalloopsy hasn't been easy by far. Tempers have flaired, full fledged 4 year old fits have been thrown, and plenty of crying has occured. Ive had my 4 year old yell at me, stomp her feet, break down crying over being told "no" and tell me I was mean. She's lost her TV many occasions, had too many time outs than I can keep track off, and at least 1 cuddle time a day. I know its been hard on her with the year we've had then throwing in moving and getting rid of alot of her stuff, Im shocked she hasnt acted out more. We've done the best to make moving fun for her. We let her choose her own room and promised to paint it purple for her. Made sure her toys were easy to access at all times as well as her cartoons. Throughout all of this, Liam's handled it the best. He's been toted around, stuck in a carseat, bouncer, crib, jumper, or playpen at all times. His environment completly changed on him. Most babies would feel the stress, Lanie did when we moved when she was 1. Liam has been perfect. I think its due to all the hospital stays and environmental changes. Working on a house, packing, moving and unpacking is alot of work and very stressfull. Its taking more time to unpack and put away than it would if Liam didnt have so many medical needs. Basically our life is crazy. Its so easy to be angry about Liam's condition. Its finding that white light, or good in the situation thats hard. Ive been working very hard on looking at the bright side. Because of Liams condition we have met so many wonderful people. People that have changed our lives, our hearts. Because of Liam's CDH we are telling everyone Liams story and doing what we can to spread awareness. If it wasnt for Liam being born with CDH we would have never known anything about it, would have never known how hard it strikes and how much it hurts. Im not saying Im ok with it or that I would have chossen it if I had the choice because God knows I wouldnt. But I want to take my families experience and do what I can to make a difference. Imagine having a 4 year old and a normal 1 year old then taking on such a big task, then add in special medical needs for the 1 year old. Some call me crazy but Im determined. Besides listening to a 4 year old say "Congenital Diaphragmatic Hernia" is pretty darn cute. Liam has become more of a 1 year old now than the sweet baby he was. He's more interested in playing now than ever. He more interested in sitting up and playing with toys then rolling around. He uses his voice to try and tell us what he wants and he copies just about everything we say. He's come a long way from the NICU and we couldnt expect more from him.

We made it

WE MADE IT!

We made it through NICU,

We made it through Liam's first year,

We made it through the emotional first birthday party.

The Birthday Boy! 

Cousin Caleb

David and Kim

Liam enjoying his gift from Uncle and Tia

Uncle Cliff's first time holding Liam

"He's gotten so big"

First time meeting cousin Christina

First time meeting cousin Shannon

Loves his Tia

Cousins Stephanie and Chuck

"Mom im tired"

And two minutes later he's out

Everyone watching Liams 23 minutes video

Liam's first cupcake!

He didn't eat it but he did a great job making a mess so mommy could get some cute pictures.

Our balloon release.

It was very emotional making the speach to let everyone know the significance of the release and the one pink balloon.

The pink balloon was released in memory of Maddie Spence.

When we couldn't be there for the first few days of Liams life at UCSF, the Spence's were there. They prayed over Liam and watched over him even though they didn't know him or us. They were a gift from God and a huge reason why I survived the NICU.

Elva and I have been friends since JR High

My family from Bakersfield

The Bryant's