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.