Orthopedics and Oncology- All in one pretty package!

Mid February I called to get into one of our many specialist to get a script for AFO's or SMO's or something to get Ty braced. I was hoping to get it done before anything drastic happened. We visited with our Neurosurgery first in hopes that we could easily get the script and head off to Brett's and be done. But Dr. Shafron had other ideas.

D. Shafron felt that it was time to talk baclofen. And not just baclofen pills but baclofen pumps. He didn't feel that he could write the script for the orthotics but really wanted us to do the baclofen trial. He checked our weight and was excited to see that Ty qualified for the pump by about 4 pounds... YES 4 pounds. This thing looks like a hockey puck in their bellies. I have not wanted to even do the trial. We were even offered the trial in Utah and I just couldn't do it.

See- This is NOT going to fit in my kids belly. He is so, so little.  The other problem is adding another foreign body in his tummy makes me want to throw up a little. Adding his shunt into the mix is something I do not want to do. Adding a shunt and the pump, puts his shunt at a 90% failure rate. That is not something that I can do to him. I just can't do it. 

I tried to politely decline and he said I could call Marie, his nurse and set it up any time I wanted. Then I of course, did a shameless plug for the Hydrocephalus Association and our WALK and he said he he would get his office staff involved and he sent us on our way.

Since he wouldn't give us the braces I needed to get in with our Ortho doc. Low and behold we found out that our beloved Ortho was leaving. I was devastated. I might have cried just a little. 

Dr. Shrader has been the BEST orthopedic doctor ever. He is kind and patient and sometimes he just sits there after he talks to us and lets us cry and offers us a side hug. And he says "I understand" and he doesn't just say it he means it. You see. He has triplets. 2 of them have cerebral palsy. They have gone through summers of the same surgeries that he asking us to go through. He will walk you through everything that you ask of him.  But you see, these triplets, they grew up and are going to college. And he has done such a great job of raising them that they are moving back to Mississippi. And they are going to continue to grow and strive and him and his wife are going with them.

So we saw who he recommended. Dr. Emily. Dr. Emily is a very nice doctor. First time we met her, she was running late and we were tightly scheduled with oncology downstairs with a transfusion for Grayson. It was our last one and we just kinda wanted to get done. So she came in, and she said he needs surgery. Bracing won't work. Bracing would be stupid. I am not writing a script. I was SO mad and got SO defensive. She didn't want to tell me exactly what she wanted to do right then because she didn't have the results of his gait lab. So she scheduled another appointment and sent us downstairs to oncology.

Oncology just SUCKS. Grayson was there for his final FINAL appointment and we did do blood and a small infusion just to finally get him up to where he was finally on the scale. But we were there in he time of needing to wear masks and it was just a MESS.

Trying to keep masks on a kid with sensory processing disorder and a 3 year old is nuts. But they did a great job. We left after the infusion. Stuffed our faces with muffins and left. I always feel DEPLETED after a trip to the hospital.

We made another appointment for Orthopedics while we were there and we were allowed to pick up our BIG HUGE TOY and Grayson batted his eyes and got Tyler a BIG HUGE TOY too. ( Let me tell you, 4th floor gets NO toys. We don't even get freaking stickers up on the 4th floor, but the oncology floor, you get SETS of toys!!......) Grayson was released to go and get his blood tested monthly with his pediatrician and he was so relieved.

I do have to say, having this experience with Grayson has cause some major damage to his little brain. He is HORRIFIED of hospitals. He is OK going with us for Tyler. He is fine with watching things happen to Tyler but to take Grayson in for an appointment for himself is literally the most devastating thing that I have seen in a child. Tyler has had 100's of procedures done on his body but he doesn't have the same anxiety that Grayson does. When I was asking for advice from some moms in a sports group, I was flat out told that Grayson wasn't old enough to remember that I would be gone or that we would be at the hospital with his brother. That is by far one of the most false statements about Grayson.

Grayson has anxiety and starts to cry when he sees show about hospitals on TV. When Tyler was hospitalized back in November, Grayson came with me to check him in and the nurses were upset because Grayson was not old enough to be on the immune- compromised floor.  But he wouldn't leave my arms. His dad was on his way, but he was so anxious.

Novembers Overdose and hospitalization- 

 His dad said he didn't leave his side as they were leaving. When they got home he wouldn't even let his dad leave the room. This lasted for 2 days while we were in the hospital. While it might not damage some children, Grayson is VERY tenderhearted.  So for Grayson and this release from the oncology ward was HUGE. For Grayson for this upcoming surgery is DEVASTATING.

*For those that TRULY think that having a special needs child and having them have physical disabilities with major surgeries often ( and I don't even think we have had it OFTEN) It truly does impact the entire family, but it impacts the siblings of our special needs children. We often refer to our Special needs children as super heroes, but the overlooked heroes, are those who stand by as the sibling watching and being pushed aside.*  ( Sorry a HUGE, TALL, Soapbox!!*

People are CRUEL

When Tyler was little and had to have his second shunt revision in six months, we didn't have time to coordinate with his doctor to shave his head completely. We tried all the other times to beg to have it shaven to avoid the insane drama that came with his hair cut.

In the hospital we were in the ICU. He was doing so well the next morning that we took a walk to get out of the 4 walls we were trapped in. We went to the cafeteria and we went to get him some pizza. We went into the cafeteria and EVERYONE stared at us.

Literally everyone.

When I would look them in the eyes they would quickly avert their eyes and look away, making it even more obvious that they were staring.  I don't blame kids for staring. I do find it sad that the majority of the staring people were adults. Kids, well they don't know any better and they generally ask what happened.



Do I blame people for staring? NO, I don't. It looks strange, and even a little scary. But he was a little boy. It wasn't his fault and we were in a children's hospital so let's not stare at the kiddo's with bald heads because of cancer, or the kiddo with a growth on his face. We know it looks bad. Trust us. We don't like to look at it either. But don't stare.

Recently in the news there have been 2 very shocking events that have transpired. The first one is about a Seattle couple who were in the mall sharing a tablet and having a conversation about a book. The couple also happened to have cerebral palsy and were in wheel chairs. Both of them.

As the event transpired, the women saw the two men hanging around and said she started to feel uncomfortable. She said she didn't want to engage them so she just let them be. One man started to leave and the other man came towards them and snatched the tablet away from the women.

The women has taken the high road and forgiven the men who did it, but she thinks that if the person is going to target them, they are willing to target anyone. The video has gone viral and even CNN has picked up the news cast.

Bringing us to the next horrific cruelty this week. The ALS challenge was all over the place last week. Dumping ice water on their head for awareness of a terrible neurological condition. While the majority of the people who participated were doing it in a smart fashion, we can't help but be shocked by the grandfather who poured freezing cold water on baby. But the even more horrific one was the high school students targeted a 15 year old boy who happens to have Autism was surprised by not ice water, but urine, feces and other bodily fluids. The video was filmed on the boys phone. It was posted on Instagram.

The family is hoping that the public can share their story in order to raise awareness for the harmful effects of bullying and especially the effects of bullying on a specific, more vulnerable group of people.

Stares and whispers and points and teasing are nothing compared to the harm done to the last boy. But the pain in the mother's voice and the sadness she was feeling knowing that people didn't love her son like she did, was just as bad as the bullying itself.

Targeting someone who can't chase after or do anything to defend themselves, and committing a crime, is cruel.

Staring, whispering and not including a child is cruel. It hurts.

 In 2 of the 3 instances, the moms were probably hurt more than the children, but the effects of bullying are felt, not only as the person who was bullied but the parent as well.

PLEASE... Stop the cruelty. If you see someone who is being mean to a child, especially a child with a disability, make it stop. If you have a child who is close in age to a child who has a disability, or if they attend the same church or are in the neighborhood, include them. Make the cycle of bullying and abuse stop.

School time, Bullies and Just Mean

When I was growing up school was always anticipated and we would get so excited for it to start. We spent the summer working to get our school clothes so we could buy what we wanted and we went shopping for new stuff. As we got older we got to go to the mall. I always thought that was the coolest thing. To know I got all my stuff from the mall. I still remember the dark blue guess jeans I HAD to have and I spent way to much money to have them.

Even when I went back to school some things never changed. I was never really popular ( I KNOW... SHUT THE FRONT DOOR!!) I had friends and I had some really great friends. I loved my high school group of friends and I adored my best friend Stephanie. ( who is due to have another sweet boy SOON!)

There were some kids that were teased HORRIBLY. Most of them had things "wrong" with them. One that I remember was teased to the point of cruel was John. I am pretty sure John passed away after high school. No one really knows for sure. But some mean stuff was done.

Last night I was watching the bachelor pad and the challenge was plain out CRUEL. They were throwing eggs at the people who they thought were the ugliest. It kind of made my skin crawl.

Add that to the man that decapitate his sons head and left it outside for the mom to find so she would " feel stupid" it really got my tears flowing. The little boy was mutilated. He also had cerebral palsy and his dad was "tired" of taking care of him.

I do not know what the future holds for us. But I am sending my sweet baby off to school. He is not " normal" by outside standards. He is "normal" for us. But he struggles. He has childish games he likes to play. He doesn't pretend play with others. He doesn't understand guns and war and Indians. Or start wars and start troopers. But he wants to belong. He wants to have friends. He wants to have other people be around him because he is him.

I guess I am asking if you are sending your kids off to school, teach them that there is different and that different isn't bad. That they have great things about them. To find the good and not the bad.