I'm Walking!!!

Yes indeed, I'm walking! Ryker took his first real steps today and is enjoying it! It's amazing enough to see your child take their first steps but when you've waited 17 months it's all the better! All I can think of is how far he has come...I'm so full of gratitude tonight.
Ryker continues to dislike eating. We still use his feeding tube a lot but that's okay. We just try to give him food that he enjoys my mouth....he likes suckers, and sometimes a couple noodles if he doesn't choke on them.
We went to an ENT (ear, nose, and throat) Dr. the other week. He said Ryker has a very long uvula (that thing that hangs in the back of your throat and serves no purpose.) He will go back next month and have an endoscopy. They will put a camera down his throat, feed him, and see what is making him gag and wretch so much. Seems to me like having a camera down your throat can't help your gag reflex much either...

We were able to go see my wonderful family and visit the beach. He loved it!

As for Genetics...oh, Genetics...no call backs or follow up on insurance approval despite me leaving multiple messages. However, Ryker's Pediatrician was nice enough to call me today and let me know he tried getting Ryker in with another Geneticsist. He says we just need to be persistance. It's nice to have someone be an advocate for Ryker besides me. It's so frustrating when Dr.'s don't listen or follow through.   

The state offers an "Up to 3" program to qualifying kids with delays. Ryker has had their services for a year now and sees an Occupational Therapist, Speech, and a Behavioral Therapist. He has started to put vowel and consonant sounds together...uhhhh, buh, duh, dada...no Mama yet but I'm working on it! He's also learning how to communicate by pointing, making eye contact, and making sounds. These are milestones that I always took for granted with my other kids...things that come so easy for others. 

I just have to say thank you to everyone for your continued prayers and love. It's been a wonderful Summer!

Best. Cart. Ever. Ryker was SCREAMING he was so thrilled to be "driving."

We have a 20 Pounder!

Ryker is finally on the growth curve for his weight! Yay!!! He's in the 2 percentile and I couldn't be happier. In our society today we place such an importance on being in the 90th percentile, walking early, etc. However, having Ryker has taught me that some kids grow at their own speed and in their own time.  I've never worked so hard to get a child ON the growth chart! 

We met with his Gastroenterologist yesterday and he said to keep doing what we are doing because it's working!

 He has not been a good eater lately so I've been using his feeding tube quite a bit, which I'm grateful for. However, yesterday a friend offered him cheese puff balls and he ate 8 of them without gagging, retching, or vomiting! Anyone who knows Ryker, knows this is a huge accomplishment! I was so happy to see him enjoy eating and have a dirty face!

PS This post is brought to you by, Ryker sleeping in 2 hours late! This NEVER happens. I don't know how some Mama's post daily or weekly. 

Setting a record!

It has now been 2 months and 2 weeks since Ryker's last hospitalization! This is the longest he has gone without being admitted in his entire little life! It's so wonderful having him home. His spirit lights up our house. 

He LOVED the icing! 

For Ryker's birthday we played pin the extension on Ryker's Gtube. I bet ya won't find that on Pintrest!  

Mother's Day 2013
(3 pounds 14 ounces)

Mother's Day 2014
(18 Pounds)

Mother's Day was EXTRA special this year because I had my baby home! And he has come such a long way....
Ryker weighed in at 18 pounds again this week. He hasn't gained much the last couple weeks but he hasn't lost anything either.
I called the Genetics department to see how insurance approval was coming along. His secrtary told me he hadn't written them a letter yet. I told her I wasn't surprised because I've heard he takes a while to follow through. She said, "bless his heart", and agreed with me. She said she will get back with me soon. That was last week.
We also had an appointment with Ryker's Gastroenterologist last week. He said Ryker was gaining "good but not great." But I know for Ryker, he's doing fantastic.

Happy 1st Birthday Ryker Man!!!

Today's the day! Wow what a year! We made it!! A year ago last night I went to the ER with the most excruciating chest pain thinking it was heart burn from hell, only to find out Ryker had to be born so I could get better. It's still hard to think about. Yes, I'm so grateful to have Ryker here but we will never forget the entrance he made into this world!

Ryker weighs 17 pounds 4 ounces today. He's lost some weight because of an ear infection but is starting to act like himself again.

I wish I could name all the angels that have helped us this last year but I'm afraid I'd leave someone out! There are more than I can count! All we can say is THANK YOU. Thank you for coming to our aid so many times. We couldn't have done this alone.
These amazing pictures were done by my sis in law Emily. Thanks to her I have beautiful memories of all my family! Here's her link if you need family pictures done for Spring. Lavender Lime. I love her! I can't say it enough.:)

Ryker Fact.......Ryker spent 2 months 3 weeks and 3 days in the hospital or 22% of the year. This year will be different.

He had no problem digging into the cake! Not shy at all.

Thank you for following Ryker's life and celebrating with us. Love to you all!

What can I say...

We are beyond blessed! Ryker is happier than ever and is up to 17 pounds 10 ounces! He has gained beautifully since he was discharged from the hospital on March 6th after his 5 day admission with a blood infection.
TODAY, he pulled himself up to a standing position while holding onto the couch!!! He was just as proud of himself as I was. He also crawled on all fours for the first time today! It's so rewarding to see him meet these milestones. And his smile is the icing on my cupcake.

We are so grateful to celebrate his first birthday next Friday the 25th!

Because I'm HAPPYYYY!

Another great week! Ryker gained 5 ounces! He's up to 16 pounds 7 ounces. He's the happiest baby I've ever met. I think he's grateful he's not in pain and takes advantage of feeling great! He just started going from laying down to a sitting position all by himself. He crawls everywhere and squeals when I run the vacuum. 

I haven't heard back from the Geneticist about insurance approval for testing but it's a process. 

 A few more pics from the Todd Morrison Alumni Tournament. It still feels surreal...

The Todd Morrison Alumni Tournament

 

Where to begin! It has been an amazing week! It still feels like a dream. The Fundraiser was life changing thanks to the Todd Morrison Alumni Basketball Tournament. It proved that there are good, kind, giving people in this world. Even total strangers. There was a silent auction where over 20 companies and individuals donated items or services. As I walked by the long line of tables with items for the auction, I was overcome by feelings of love and gratitude.

During halftime we got to go out on the court and they introduced Ryker and our family. They told Ryker's story and gave us an opportunity to speak. I had an idea of what I wanted to say but thought I'd just say what was in my heart and I did. We are so full of gratitude! And one day we will pay it forward.

The week ended on an even happier note when Ryker ate food from a spoon AND didn't throw it up! You would never guess what he loves. Baby food PEAS!! In my 22 years of being an Aunt and Mom I've never met a baby that liked peas! I of course added butter because that's what the doctor ordered. Seriously. I've tried SO many different foods only to have it throw up on me or have him turn his head and refuse it all together.

We also started this week off with a happy weight check! Ryker is up to 16 pounds 2 ounces!

We've learned that Ryker has his ups and downs but if you don't celebrate the ups, you will never make it through the downs.

Who needs luck? We have blessings!

Today, on St. Patrick's Day, the term "lucky" is often used.  Someone could say that today about what happened yesterday to Ryker's family, but I prefer to use the term blessed!  

Every year, Box Elder High School has a basketball tournament called the Todd Morrison Alumni Tournament.  The tournament is a big affair with many sponsors, and each year they choose one local family in need to donate the proceeds to.  

Well, as you can imagine where this is going, the man in charge of the tournament got in touch with the family yesterday and asked how they'd feel about being the sponsored family this year!  Many smiles, a million plus thoughts of gratitude and maybe even a few jumps in the air were celebrated!  

We believe that God is watching over Ryker and his family at this time!  They have been through so much this last year, and this is such a huge blessing for them.  So a big thank you to the TMAT for choosing them!

If you'd like to find out more about the TMAT and the events they are holding this week, check out their FB page here.  

On a side note, if you are a local, you can take the opportunity to help Ryker's family this week!  Maddox is donating 15% of your bill to the TMAT on Tuesday, Wednesday and Thursday.  This applies to dine-in or take-out.  Just be sure to mention the Todd Morrison Alumni Tournament when you order so the funds will go to Ryker!    

 

Thank you to all who have supported Ryker and his family!  And may you be blessed for your love and support as well!

Home Sweet Home!

Ryker in the ER last week

I can't tell you how great it is to be home! We got home last Thursday after spending 4 days in the hospital with a blood infection or septic shock. Whenever there is an infection in our bodies, the first thing it does is attack any foreign objects, in Ryker's case, his PICC line that was right in his blood stream. And the infection just festers.
I kept his line super clean but infection can enter the body in so many ways.

I have a love/hate relationship with Primary Children's Hospital. I'm sooo grateful to have it close and have so many brilliant doctors, Therapists, Nurses, etc. at our fingertips, but I don't like having to go! But no one does.
He did get his PICC line out which I was super excited about. :) I'm grateful he had it to help him gain weight don't get me wrong, but it doesn't come without consequences.

We met with the Geneticist yesterday and he didn't think Ryker has Russell Silver Syndrome, but wants to do some genetic blood tests. He also ordered a skeletal study done of Ryker to rule out Hurler Syndrome, (which I REALLY don't think he has) but it's when you have the inability to break down certain sugars.

We also had a great Doctor visit with Ryker's pediatrician. He said, "even if after the genetic tests are done and we still don't have a name for what Ryker has, you are still giving him the absolute best chance at life." I had never thought of it that way. I feel like I'm always fighting for Ryker and trying to get a diagnosis (which I always will), but  in the meantime, it's okay to not know all the answers. I know that I'm giving it my all, and for now, that's all Ryker needs.

Back in the Hospital--Prayers Needed!

Yesterday afternoon, Ryker's parents took him to Primary Children's because he had a high fever.  He was admitted because there is a small hole in his PICC line.  

They did a blood culture and it came back positive for a fungus infection in his blood.  They are waiting on the other cultures to come back, but have started an anti-fungal med along with vancomycin (the big daddy of antibiotics).  They are also treating him for meningitis as a precaution.

He's broken out in red spots all over his body, though the doctor says it may because of the 104.1 fever last night.  The high fever tells us he is fighting something bad.

Ryker will be in the hospital for a few days, where they will put another PICC line in so he can get antibiotics at home.  

Needless to say, Ryker is in need of prayers at this time.  Any thoughts and prayers for Ryker and his family are greatly appreciated.  Words of comfort to Marc and Jenny will also be appreciated.  They are very grateful for the support that has been shown to them these past 10 months.  Thank you!  

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. :) 

Mother Knows Best

Ryker gained a good ounce a day this week which is right where he should be! He's 13 pounds 12 ounces. 

I'm so extremely grateful for this blog. I know Emily was inspired to start it! It just so happened that one of her friends saw Ryker's picture (a very knowledgable mom and also inspired) and mentioned getting him tested for Russell Silver Syndrome. I've been researching it and it sound like I'm reading all about Ryker! It doesn't explain all his digestive problems but it could be the reason why he's not growing at the rate the doctors want. 

We go to see his Gastroenterologist this Thursday at Primary Childrens. I will see if he has had any experience with this syndrome and if not, then we will see the Geneticist in March. 

I'm so happy that I followed my gut and asked literally 5 different doctors to see a geneticist until one of them pacified me and said okay. Persistence pays off! I even had one doctor tell me that genetic testing is expensive. I told him that having an explanation for all this treatment would be well worth it. (Turns out our insurance would cover it anyways.) Another doctor told me it wouldn't benefit him at this time. Treating Ryker's symptoms and getting him to grow is fantastic don't get me wrong! But I want to know WHY and thanks to some MOTHER'S that acted upon promptings, we may have answers a lot sooner than we ever thought. 

You're gonna hear him roar!!!

A video that Ryker's mom made, showcasing some of what he's been through in his short life. ♥ (Please be patient, it takes a minute to load.)

Weight Check

Ryker gets weighed every Monday morning. Today he was up to 13 pounds 4 ozs! The doctors want him to gain at least 1 1/2 ounces each day. They are hoping that Ryker will only need the PICC line until May or June. He will keep his Gtube for possibly years depending on how fast he gains weight. However, he sees a Geneticist in March because the doctors still don't know why he's not gaining weight. It would seem he's not absorbing fat and calories, however, tests contradict that theory. As for now, he is a happy boy and making progress!