Long day since I'm not feeling well but I wanted to let everyone know Ryder is doing great taking care of himself. Kidding of course but he loves to tale his temp by himself lol. He hasn't been ober 99.5 today which is great. He doesn't want to tale his meds and surely hasn't had enough to make him feel better so it's a mystery on what he had. However all that matters is he is doing better. Still congested and I can her it in his voice but eating and drinking like a rockstar. Thank you for your prayers.
It's no wonder they always ask what the heck is wrong! Ryder wokeup with a temp of 102.7. Went to the Dr after a bath and was at 98.1 smh. I explained the high fevers and she felt we are dealing with a different virus because the symptoms are 10 fold of how he was 42 hours before when she saw him. We swabbed for the Flu and RSV. Both came back negative however they aren't always accurate. So we are treating for the flu because she believes that's what it is and wants to be safe. We are back at 103 tonight. Hoping this will get better in the next few days.
Please say a little prayer for Ryder. I'm having a hard time going to bed. We are headed to the Dr. for the 4th time this week tomorrow I hope. I'm sure they will think I'm crazy but his symptoms are so unpredictable. Fine one minute and all the sudden not eating or drinking with fevers up to 103.1. I hope they can do something to help him. I'm having a hard time going to sleep because I'm so worried yet if it is just a stomach bug he just needs time to pass it. It's just so weird how he is fine for 5 or 6 hours and goes downhill. Joe also fell asleep at 5pm tonight. Hoping he was just tired 😓.
Photo from last week. Since December 19th Ryder has been displaying some unusual behavior. Nothing to pin point anything and of course he had strep on the 25th so I've chalked it up to that until yesterday. Things were just pointing to weird and when I wrote all these weird things down none seemed strep related. I took him to a Dr Saturday. She chalked this all up to him being sick in December and off we went. This morning he has a low fever, white liquid poop and threw up right after. I took him right to pch urgentcare where he was active and happy. I was told they don't test for the flu, his lungs, ears and mouth look fine so keep him hydrated. I was shocked. With all this going around you spent 7 minutes with us and sent is home with no tests. He's still vomiting but I feel it's under control. I will be calling HIS Dr tomorrow. Always trust your mom gut. Flu or not something is off here 😓.
His shirts too small and his shoes are too big but He refused to change before he went to his friends house and out to family dinner. What's a mom to do? Well I told him that's fine as long as I can take a picture . This is first date material! Gotta think ahead 🤣.
2 years ago Ryder had his first plane ride. We got to the airport and the Delta lady informed us our flight had been delayed and we would not make our connection. After telling her over and over that I HAD to be in NY by 8am for an appointment she said she checked every airline and she just couldn't make it happen. I'm pretty sure to this day that lady has never seen someone dissolve the way I did. If we missed that appointment we would need to head straight to PCH to have a port put in and start systemic chemo because the NY doc was going on vacation the next day and treatment couldn't wait. I couldn't believe all this researching and planning for what was best for him had just been thrown out the window. However as I was having a moment Joey held his phone up and said "here's a flight right here. It will get them in at 6am. Book it!" We flew all night and made it to his 8am appointment thanks to Daddy ❤. The next 7 trips were all straight flights so we could avoid this. #eyefighttowin#knowtheglow
Best buds ❤
We went to @gigisplayhousephx yesterday. I do talk to Joe about Down Syndrome but he definitely doesn't get it so I don't push it. After that we went to the store and on the way home Joe said "Mom, does everyone that knows Ryder know he has Down Syndrome?" I was shocked since he has never asked anything about it. I told him everyone that meets Ryder knows he has Down Syndrome because it is visable. He said "it is? I think he's the cutest baby I've ever seen!" So I told him all the babies he saw today had Down Syndrome. He said "They did? They are all so cute. Mom, my favorite is Gracie. How adorable is she?!? And that pink hat. It was so cute. She was rockin it like a gangster." Made me think If all children were around all children people wouldn't see that much difference. They would certainly grow up to be accepting of everyone. #inclusion
@gigisplayhousephx today with brother which is a whole different thing I'm not going to get into 🙈. Ryder loved putting the pieces into the connect 4 so I wanted to take a proud mom photo. The little things that we don't realize actually take work. However just at that moment he clearly looked off to daydream and say without words "I'd rather be shooting hoops mom." Haha
Back to everyday life today.
We had therapy at the hospital which I love. We always pass this older lady who volunteers there but she has never said a word. Today she stopped me and said "you always dress him so cute and he always makes me smile." I thought it was so sweet.
20 steps later another older lady said "he looks like a jail bird." #fashionpolice#beingthiscuteisacrime 🤣
Today is not a day I celebrate however it is a day I'll never forget. 2 years ago today I remember our every move. From the first phone call to my husband where I said "I'm sure it's nothing." To the next crying call Where I told him "I'm pretty sure you should be at this next appointment with me." Where we were at and the time, where we took Joe, the moment time stood still and wondering how could we possibly make such big decisions for our 4 month old? Praying everything would be ok and god would lead us to the best decision.
Today I wokeup remembering all of this. I opened FB to see God opened the gates for another child who lost their battle with Retinoblastoma. I ask that you pray for this family.
Never be afraid to say something. If you see the glow in your child or a friends child please speak up. Inform them to see an eye Dr. Early detection is key and so many moms (like myself) have no idea the glow is a thing.
There are 20 different reasons an eye could glow. It's important to know all of these things should be check but cancer is the rarest reason. I never want to cause panic yet I want people to know it's better to be safe and get it looked at. Have your child see an eye specialist by 6 months old.
2 years ago I laughed and smiled with our Dr as we talked about how amazing Ryder was doing at his 4 month appointment. Forever thankful I didn't forget to mention the annoying glowing eye. I couldn't understand why we needed to see someone so fast or what she was even worried about. He was healthy and perfect so her response threw my stomach into knots. But even with that no one could have prepared me for the days to come. 100% caught off guard. 2 years ago today I didn't even know what retinoblastoma was 😓.
What are you most looking forward to in 2018?
As for me, I'm hoping to feel better. Everyone always says what a good mom I am but on the days that I really don't feel well it's hard. I feel like I'm failing as a mom and a wife. I'm hoping I get some solid answers on the 11th.
I'm also hoping to get back to selling more. My energy level is so low half the time it is hard. If I get answers I can meet this goal.
And as always, I'm praying our whole family remains cancer free.
I don't set resolutions, I pray for a better tomorrow, health and answers ❤. You?