Easy to Forget

Sometimes we look at all the good and we forget about the bad. 

I post so many pictures on Facebook of a smiling, happy, seemingly health Liam that it's just so easy to forget that there is a little boy behind that smile that has fought for his life and that still fights for his health and happiness. 

People see a few smiling pics and they forget. It's easy to forget. I've gone through Liam's page and realized how very normal he seems. Yet the truth is he's not normal. He's extroadonary! 

He's a superhero with strength beyond our reach. He's a little boy who refuses to slow down just because he's having trouble breathing. He's strong willed and fights his tube feeds because he just wants to be able to eat and run and be normal. He's a little boy who still needs his Mommas hugs when he's trying so hard but in his eyes failing. 

Your never failing Liam, as long as you try. You don't need to be normal because you are so much more than normal. Your extroadonary and everyone only wishes they could be half as awesome as you! My little Liam, be proud of who you are. Never hide. God has a plan for you, you will see one day. Just be patient. Be kind. Enjoy being you. I know it's hard sometimes and you get so frustrated you just break down crying, but we will make it through every obstacle as we've always done...together. 

My feelings for him growing up are so mixed and confused. It feels like it's been forever since he was born, not merely 3 years and 5 months ago. Yet it feels like it was only yesterday and that we've been cheated out on so much. On one hand I want so desperately for him to catch up to a normal height so he isn't so small compared to the other kids. Yet I am secretly glad that he is growing slower so I can attempt to get back the time CDH has cheated us out of. However there is one thing I am never confused on: I always want him to be healthy. 

3 years ago yesterday we celebrated Liam reaching the 10lbs marks. 

It was such an exciting moment. I remember crying in the doctors office after he was weighed. Finally after all the struggles to get him to eat, it took a nissen fundo and a gtube for him to gain weight. This was the moment I knew 100% I had made the right choice in letting them give him a gtube. 

A few weeks ago he stepped on the scale at my doctors office and it read just over 27 pounds. It took 3 years to gain 17 pounds. He spent 2 years unable to get past 20-23 pounds. It was a hard time for everyone. 

There's so much my little superhero has accomplished. Things that we weren't sure would be possible. He didn't walk until right before his 2nd birthday. He didn't even crawl till about age 1 1/2 years. We've come far and I am happy that it's easy for most to forget he has medical needs. Finally people are able to see what I've seen all along, a sweet loving little Liam. 

Klumsie

Christmas magic is continuing here in our home. It started with Elfies blog that Lanie loves to visit and is continuing with Reindeer on the Roof. We adopted this last year on clearance so this is our first year using it. And since Lanie and Liam can't stop talking about Elfie and asking when he's going to come back, I decided no better time than tonight to open this guy up. And make the Christmas lists again. 

The kids thought he was great. They love that it came with a book and a barn. Once you write out your Christmas list, you secure it into the reindeers saddle. Then you put the reindeer on the roof of his barn and while the kids are sleeping it "magically takes off" and takes their list to Santa. 

We went online to register our adoption of a ROTR. We loved that on the front page a reindeer comes flying in and crashes into the computer screen causing it to shatter. From there we entered he code that came with our ROTR. We also got to name it and choose the color of digital reindeer. We named ours Klumsie. 

(Note: we did have technical issues with the website actually loading and saving our info but the kids for the just of it for now.) 

Now Klumsie is currently waiting for the kids to sleep so he can go on his magical flight and deliver the kids wish list to Santa. They just have to wait and see if Santa writes back. 

Strep

Lanie and I are both recovering from strep throat. I had such a bad case of it that my throat was very swollen. They put me on prednisone to get the swelling down. I learnt something while on the steroid: the steroid took away my fibromyalgia pain. I had a few blissful days of no body pain. Just the strep. The last two days I was able to get a lot done around the house that I couldn't get to before.

Sadly my last dose was yesterday morning and the pain is comming back. It's worth talking to my doctor about. 

I've also been breaking out Into a butterfly rash with just about anything I eat or drink. It's crazy. But I have to say that those few days of no body pain was amazing, even if I felt sick. 

Lanie is recovering just fine. She never got as bad as I did. I'm glad because it was horrible. Liam and Justin went unscathed by it. 

Liam is still only tolerating his night feed until 4am. I tried again last night to extend it but he started vomiting at 5am. He is only handling 8 hours of the feed versus the 12 they want him on. I'm officially putting my foot down to say enough is enough. This is what is working so this is what we are doing. We can't put a watermelon into a lime. 

I was reminded that these situations have come up in the past over Liam's tube feeds and every time I stood went with my gut, things worked out like they should. So I'm going with my gut again, and my gut says to stop trying to increase when he just can't handle it. Stop trying to increase feeds to try and increase growth you said was good bit because it was working you wanted more. More is not in the books this time. Liam's body says so. We all must learn to accept that there's a time to wave the white flag and and a time to charge on. This is a white flag occasion. I'm ok with that. Or Atleast I understand this is how it has to be. I won't push for more just to loose what we've gained. That's what happened here. 

Not anymore. Liam is who he is. He's good the way he is. He's growing. We need to leave well enough alone for awhile. 

Lanie's reading is soaring to new heights. I am so proud of how well she is doing. I spent a lot of time trying to build her confidence in reading and it's paid off. She reads daily at home. Usually 3-4 short books to her brother, then part of a big chapter book with me. She's even put books on her Christmas list. I found a few of the Ever After High stories on amazon for free download so I downloaded them for her. She's really enjoying them. We stop every so often to make sure she's grasping the story and to talk about what's going on. It's important she understand the story and not just the words. 

Liam sees her with books all the time so he started getting out his books to look through them more often. I love it. It's important to teach them early. I've read to both my kids since they were in my stomach.

Life has so many hard moments where we struggle and sometimes it's so hard to see the bright side. I've been trying so hard to see all our daily blessings. How far we've come and where we might go. Life is as good as it gets.