10 months old!

These pictures are such a treasure to me! I'm so grateful for Emily's time and talent that she has shared with us over the years. I'm a HUGE believer in taking pictures and preserving memories for generations to come. 

 When Ryker's oldest sister Charlotte, who is 5, saw the picture above she said, "Mom, it feels like he's looking at my heart." Talk about tears! She could not have said it better.

They could not be more proud of Ryker! I thought the newness would have worn off by now but every morning when he wakes up, they rush into his room like it's the first time they've ever seen him. 

Pure LOVE!

Ryker's weight this week was 16 pounds 3 ounces! He continues to have great weight gain even though we are weaning his IV nutrition.
For the most part, time flies by. However, the last 10 months feels like years! We've come a long ways and we continue to celebrate every milestone, big or small. 

Feeding Tube Awareness Week

So, my amazingly talented sis in law took Ryker's 9 month pictures last week! I told her about Feeding Tube Awareness Week and she put these together. I love them! Thanks Emily!

As difficult as it was last August to come to terms with the fact that he needed a feeding tube, would have a literal hole in his belly, seeing him go through so much pain after the surgery, having stomach content leak out all over me unexpectedly, dressing changes twice a day, treating irritated and infected skin because of the tube, etc., etc, I'm SO grateful for his G-tube! It's helping him to grow strong and healthy into the boy I know he can and wants to be.

We had good news this week! With Ryker's big weight gain, (up to 15 pounds 9 ounces:)) the doctor said we can reduce the amount of nutrition we give him through his IV! The sooner we start to reduce the amount, the sooner we can get that line out! Woot Woot! FYI, when that day comes, I will hold a huge celebration! I know the IV (PICC line) is helping him but the longer you have a foreign object in your body, ESPECIALLY your vein, the greater the chance of infection. Plus, the ultimate goal is for him to gain weight on his own through his tummy like the good Lord intended. With the IV, his tummy doesn't do any work, his liver has to process it, and over time, it's very damaging to the liver. So much so, that after years some kids literally need liver transplants. But, I'm hoping in May Ryker will get his PICC line out and the celebration will follow...

He will probably have his G-tube for a few years and I'm okay with that. :) 

Download the picture of your choice below, and use it as your Facebook profile pic to show your support for our favorite tubie this week! ♥

Think Sun...

I posted this picture because this is how many of his pics are...blurry! He's always kicking and squealing...I love it!

He's gaining alot slower now that the doctor had me give him less of the nutrition through his vein. The nutritionist said it's to be expected since he's had such good weight gains for the 5 weeks prior. He's up to 14 pounds 12 ounces. :)
My fear is that when he gets the IV out, he will not gain the 1 ounce or 15 grams a day that the doctors expect. I try not to dwell on the things I don't know, but I just want the absolute best outcome for Ryker. So, we keep plugging along, enjoying all the time in the nice warm house without going crazy with all the snow outside. While everyone is praying for more snow, I'm secretly praying for a way early Spring!

Lessons learned...

Nothing makes me happier than to see my baby eat...through his mouth! I was thinking of how I nursed my other kids till they were at least 1 year old without a problem and that was the best thing for them. Well, Ryker has shown me that every baby is different and even though I didn't get to nurse him for long, I'm still giving my baby nourishment and bonding with him. Whether it's a bottle, through his G-tube or through the IV in his arm, I'm giving my baby the BEST thing for him. 

I never dreamed I'd have a baby that would struggle so much to grow and thrive....to not be sick...to not have to fight for their little life. The day Ryker was born the doctor said he was a fighter. Weeks later during his long hospital stay, doctors and nurses were always commenting on what a fighter he was. To this day, I've never seen a kid SO determined to roll over or try to sit up. He grunts and groans trying so hard...it's his attitude. He teaches me determination and patients. 

Since his pain level has decreased immensely, he smiles more times than not. Someone asked me if he smiled all the time because in his pictures he is always smiling! It's true. He's a happy boy. Content with life. 

14 pounds 9 ounces and counting...

People are so nice!

This is Ryker's aunt posting today.  First of all, I just wanted to say a big THANK YOU to all of you who have supported Ryker and his family!

They have gone through A LOT since last April, and it's just been so wonderful to see all the support they have gotten from neighbors, friends and even complete strangers!  Jenny feels very blessed and has a renewed hope that everything will be all right!

Marc and Jenny have a neighbor who is a photographer and has made such a nice offer to anyone looking to buy some art for their walls!  If you go to his site and buy a picture, use the code "Ryker" at checkout and you will receive a 5% discount AND the proceeds go to Ryker!    You can check out SBFOTOS UTAH right here!   Also, check out the "Ryker's Sponsors" page for more ways you can help Ryker and his family and get something in return!


Thank you to all who have shared Ryker's story, have left positive messages of hope, or donated to help pay for Ryker's medical bills.  May God bless you for your kindness and compassion!

If you would like to sponsor Ryker and his family through your business, please email Emily at HopeForRyker(at)gmail(dot)com.  

Baby Steps

So, Ryker saw his GI doc (Gastroenterologist) last week. I asked him about Russell Silver Syndrome (a rare form of Dwarfism) and gave him some journal articles my nurse friend had printed for me. He hadn't even heard of it. I didn't expect him to, I was just hopeful. He said to talk to the Geneticists about it in March.

However, I asked him about stopping Ryker's Erythromycin medication (helps with digesting food faster) since he takes lots of fruits by mouth including prunes! He said sure! It's now day 4 and I've never been so happy to have my baby poop! I also, started him on Greens First. It's like Juice Plus if you've ever heard of that. I just mix it in with his chicken, prunes, and a probiotic. He LOVES it AND it's good for him! Anytime we stop a medication we celebrate! 

Today Ryker weights 14 pounds 4 ounces or 6.46 kilograms. I've learned that all the answers don't come at once, but I can research and do all I can so when those answers do come, I am well prepared. Knowledge is power. 

An Explanation

A few of you have asked "what's a G-tube?" or "what's a PICC line?" I thought I'd post some pics to explain.

 The G tube was placed surgically. They make a literal hole in the stomach and suture it to the inside of his tummy. It's really quite amazing. This is where he gets a 12 hour feed of a hypo-allergenic, high calorie formula at night. The picture on the left was taken at night and the one on the right was in the morning. You can tell after his treatment in the morning he's a little more puffy but pees it off during the day.

I can put medications through the G-tube too (the picture on the top). You can see how he grabs at EVERYTHING and I also have my 3 year old helper beside me holding his legs. 

The PICC line is like a more permanent IV line. It's like the worlds smallest straw and it goes in his vein, up his arm, chest and ends at his heart. He's hooked up to it for 12 hours at night. And through his lines he gets fats, proteins, calories, etc. But instead of his stomach having to work to digest it, his liver does the work. Not the most ideal way to gain weight but in his circumstance it's working miracles!

He started rolling over this week! I will try and post a video. :)