The Bed

This bed...
It's the most incredible piece of adaptive equipment that we own. Riley decided at about 18 months old that he was too big for a crib. But he wasn't rolling or anything yet so it wasn't a big deal for us to just put him in a full size bed because he would stay there. Then, he started rolling. So we thought, well we will just get him some bed rails and that will keep him in. Then, he started army crawling. That's when things got tricky. We went from one bed rail on the side to having to put bed rails all around and keeping the head and one side up against the wall. This is what we ended up with...

This worked for a couple of years but then he started to be able to pull himself up on the railings and then eventually over. He fell out of bed a couple of times and sometimes we knew it and sometimes we didn't. I remember one time at Christmas, he fell out of bed and I didn't know until I heard him banging his head on his bedroom door. I went in and there he was, on the floor, his room completely destroyed, curtains on the floor, the Christmas lights I had strung across his dresser pulled off and half of them eaten, and an array of other things. After about the third time falling out, we decided that we needed to do something different. We started to research, because we of course didn't know anybody else that was dealing with this, and we found a website called Sleep Safe Beds. If you've ever seen these beds, they are pretty spectacular. But, so is their price. $8,000.00 for a bed??? Yikes! 

Thankfully, I have this awesome brother that has done a lot of woodworking growing up and has built some pretty incredible stuff. So I sent him the website and had him look at it to see if he thought he could build something for us. He said yes, and started to build. It took a couple of months, to be able to get everything right and he was also working a full time job but between him and his best friend they built us a bed.

This bed.....

This is a queen sized bed and we went and bought him a really nice memory foam mattress to go in it. My mom sewed the pad covers and we just bought some foam pad from JoAnne's so that he can't bang his head. I don't have a picture of this, but there is another panel that can go on top of the side ones and it has little windows in it so as he grows, the bed can grow with him and he still can't fall out. The sides also fold completely down so it is easy to get him in and out. This bed has seriously been a lifesaver for us. And guess what? It didn't cost us $8,000.00! So if you have been looking and searching for something like this, give me a holler. I can get you in touch with my awesome brother and we can see what he can do for you! Just comment below or send me an email. 

raisingrileyr@gmail.com 

If I Need Help

So as I was browsing through Facebook this morning (my morning ritual before I pull myself out of bed) I came across this link for a website called If I Need Help. This seems pretty awesome. I have always thought to myself that I wished I had something I could put on Riley, that if we were ever in an accident or something, that somebody would know that he is nonverbal and special needs. I'm sure most people would guess seeing as he rides in his wheelchair most of the time in the car but sometimes he is in a carseat.  And just looking at him you would think that he would be able to talk to you and tell you if something is wrong or hurting, but he can't. 

The hard thing about some of these kids is that you can't put anything on their wrists, or around their necks because they want to immediately put it in their mouths or chew it up. So I've always wished there was something.....

And now there is!! These dog tags that tie on the shoe laces are perfect! You register with them and it's FREE to keep your child registered. If someone finds them or you are incapacitated for any reason they can scan the QR code with their smart phone or they can enter the code on the website. This will give them information about your child. Not only that, but your cell phone number is right on the tag!! I don't have the issue of my child running off or anything like that but I do know that there are a lot of parents out there that have kids who like to wander off. This is perfect for any type of special needs child! I can't wait to get mine!

 www.ifineedhelp.org 

Pediatricians

So, as I said before, when Riley was born we lived in Utah. In Springville to be exact which is close to Provo area. I thankfully had a sister that worked at the hospital in Provo and was raising two boys in that area so I had first hand info on who was a great pediatrician. So normally, you choose one before you have the baby and then they see the baby in the hospital after you have it and then you continue to see them for well child checkups and such. Welllllll that was not how it went with us. Because we delivered in Payson, we just saw the pediatrician on call at that hospital and then planned to see our new pediatrician in Provo when we took Riley to be circumcised.  That was the plan anyway. We ended up seeing our new pediatrician, Dr. Wynn, in the hospital when Riley was back in for seizures. Can you imagine what he was feeling? He'd never met us or this baby before and we dropped him in his lap as a six day old having seizures. And you know what? He was absolutely amazing!!! Over the next 2+ years, we saw Dr. Wynn on a regular basis. When we would call at the last minute because Riley was sick or was running a fever (which can be scary for a child with a seizure disorder) he would get us right in! Literally the same day. And when we would call, his receptionist knew us! Can you imagine? And let me just tell you, he was not just like that with my children. He is like this with everyone!

When Riley was 2 and Haley was 6 months old, Clint graduated from BYU in Provo and we made the decision to move back to Idaho (and he also got a job here so that helped). I was excited to be moving on with our life but I was terrified to leave Dr. Wynn! I literally had anxiety attacks about leaving our pediatrician! I had the serious thought that I was going to have to drive the kids down to Provo for their well child check ups and everything else. In my head I was going AAAAHHHHH! But... I didn't do that, because really it was irrational to think I was going to drive 4 hours every time I needed to go to the pediatrician. 

I started to research. I researched everybody. I asked everybody! And then we decided to take the kids to St. Luke's pediatrics in Twin. We originally started to see a pediatrician (and for the life of me I cannot remember what her name was) and she was great! I was so pleased that we had lucked out and found someone so awesome. After seeing her for about a year she decided to move and once again I was contemplating the decision to drive to Provo. But I asked around again and we started to see Dr. Jones, also at St. Luke's. Can I just say, I can't believe how lucky we have been with pediatricians! He is so patient and understanding and he lets us ask as many questions as we need and he takes the time to answer them and doesn't make us feel rushed in any way possible. We have seen him now for about five years. 

Now, with that being said, I do love love Dr. Jones. St. Luke's pediatrics, not a love relationship. It is super hard to get in to see him. It is super hard to get an emergency appointment with the doctor that you actually want to see. You can see a variety of pediatricians there and they can get you in to see one of them but my experience with going to one we don't regularly see is a nightmare. We have to recount Riley's medical history every time and it is REALLY extensive. But we still go because we don't want to try our luck with switching and not being as lucky as we have been. 

So if you are looking for a great pediatrician in the Provo area, Dr. Wynn is the absolute best! And if you are looking for a great pediatrician in the Twin Falls area, Dr. Jones is amazing!!

We didn't really start to notice anything different about Riley until he was about 4 months old. In fact, he used to always want to stand up on my legs and he hardly ever wanted to sit down. But then, when he should have been starting to roll over, he wasn't. There was also the fact that he would only lay on one side of his head and breastfeeding became difficult because he only wanted to eat on one side because he didn't want to turn his head to eat on the other. After talking with our pediatrician (Dr. Wynn in Provo, he's AH-MAZE-ING!) we decided to consult a physical therapist. There was the thought that the seizure medication could be making him a little bit delayed. We chose Kids Who Count out of Salem and he started getting Physical and Occupation therapy at about 5 months old. As the physical therapist started working with him we slowly started to come to the realization that Riley had a lot more going on then just delay from the medication.

After a few months of physical therapy they decided that Riley needed a helmet. He still wouldn't let his head go to one side and it was starting to get flat on the side that he always laid on. Unfortunately, he should have had the helmet on way sooner than he did so it didn't make much difference except for drive him crazy because he hated it. They also decided that he needed to have some braces on his leg because he wasn't putting any pressure on them at all and he would always flex his feet down because his legs were always so tight.

During this time he also had a surgery on one of his eyes because it was tracking right. We didn't really know the depth of his needs during this time. We just continued with his therapies and lived one day at a time. When Riley was 9 months old we found out we were pregnant again! People thought we were crazy but we actually did plan it that way because we had always wanted our kids to be close together and we didn't really know that Riley would be the way he is today. One month before I was to deliver, Riley had a grand mal seizure while eating dinner one night. The first one that he had had since he was six days old. So back to the hospital we went. This is how it went over the next 6 months. In and out of the hospital and tweaking his seizure medication. It was also during this time that they officially diagnosed Riley with Cerebral Palsy but still didn't have any answers as to why. 

A few months later, they did finally determine that they thought he had a stroke in utero. But that they didn't know if he was ever going to do things that he should be doing like walking, talking, sitting, or even crawling. Riley was 3 when he finally was able to roll over. He then rolled everywhere! He was about five when he finally learned to army crawl, which is his preferred mode of transportation to this day, as a nine year old. We continue to do therapy and hope for the best and Riley continues to surprise us. 

There is so much more of the story to tell and I want to share all that I can with you! Post some comments! Ask me some questions! I am going to continue to post things as the days go on, especially about things like his bed, his portable bed, his doctors, his baclofen pump, etc... But I want to answer any questions you may have as well! And I want to hear your comments about things that you have felt have worked for you and for your little one. I want us to be able to use each other as resources for things, especially care providers and equipment and be able to ask each other questions about things that we may not have an answer to and haven't been able to find an answer. Let's help each other!!

Our Story (In a Nutshell)

So...I've decided to start his blog. I have been tossing the idea around for a while now but I have finally decided to just do it. There has been a lot of need, I feel, for a support community for us that are raising special needs children. I am hoping that this blog can give some insight into my experience and I hope that others will feel like they can share their experiences as well. I also hope we can share our likes and dislikes about certain things such as doctors, therapies, surgeries, equipment and anything else we feel like sharing!

 So here is our story...

 I became pregnant with Riley after Clint and I had been married about two years. My pregnancy was uneventful, in fact I was never sick and I actually felt pretty great most of the time. When it was time to have Riley, my doctor decided to induce me at 39 weeks as I wasn't progressing on my own. I went to Mountain View Hospital in Payson, Utah on December 12, 2005 to have Riley. I was in labor for 12 hours, the last two of which I was pushing but Riley was stuck. During this time his heart rate started to drop and they placed an internal monitor. The doctor came and I delivered Riley on December 13, 2005 at 4:44 am. When he arrived his head was so mishapen and bruised but his apgars were good and he seemed to be a beautiful, healthy 39 weeker. Our stay in the hospital was great. Riley was breastfeeding good and was just about the sweetest thing I could ever imagine. After 4 days in the hospital we got to take our little bundle home.

After our first day home from the hospital it was apparent that something was off about Riley. He was having these little spasms and we weren't sure if it was just a newborn thing or if something else was going on. My sister, Steffanie, was a newborn ICU nurse at the time so we had her come over to see what she thought about him. I remember what I was doing when Clint came to tell me that everyone thought we should take Riley back to the hospital. I was sitting in the bath and I was suffering from deep postpartum depression. I don't tell you this so you will feel bad for me but I want you to know that it's a real thing and it can happen. Clint came in to tell me and I just remember thinking the worst possible scenarios. My sister was having the thought that he was having seizures and that we needed to get him back in to figure out why. 

So back to the hospital we went. This time to Utah Valley Medical Center in Provo, Utah. Long story short, Riley was having seizures but they weren't sure why. After four days of tests they figured out that he had a bleed on his brain in his occipital region of his brain. They put him on seizure medications and told us that they thought the bleed would absorb on it's own. The best thing during this experience was our pediatric nurse. She is one of the main reasons I decided to go into nursing. Peds nurses are amazing!! 

Back home we went! Two days before Christmas and with everything that was going on I found that my depression had gotten better as well. Riley did great and we all thought that he would grow to be a happy, healthy little boy. 

To be continued.....