August 5-12, 2016 "First Family Vacation"

The Bradley family rented a cabin in Gatlinburg, Tennessee for a week. This was Rayden's first family vacation. He actually did very well and traveled better than the grown ups!

There was a beautiful view off the back porch. We even saw some critters: A fat groundhog begging for bread every morning and a black bear at the trash bins each evening.

 One of our favorite things to do as a family is go to Dollywood. Even though it was hot, Rayden seemed to enjoy himself. When he got tired he just laid back in his stroller and took a nap. We just couldn't ask for a better baby! He rode a few rides: carousel, ducks, bumble bees, antique cars, and the train. He thoroughly enjoyed each one but I believe his favorite was the train. He continuously chanted "choo-choo" while riding.   

 

We were also able to do lots of shopping. Rayden's favorite place was The Island in Pigeon Forge. We rode a trolly from the parking lot. He was able to ride a little train all around the shopping grounds as well. He enjoyed watching the musical dancing water fountain too. So much fun. 

Spending time with family that you hardly ever get to see is priceless. We all enjoyed our time together and hope to make this trip a family tradition. 

July 25-Aug. 15, 2016 "New AFO's"

July 25--Rayden got custom molded for new AFOS that have softie inserts and will except some plantar flexion. Dr. Cuomo said although they will be less supportive when he walks, they will give his skin time to recover. In the mean time he doesn't need to wear anything on his feet because the skin needs a break.

Aug. 4--We got Rayden's new AFO's. I can already tell they are too big!!!! Mrs. Cathy, PT, used two of the large pringles in hopes to take up some of the space. There is no tread on the bottom so he is going to slip and slide on the hard wood floor! I AM NOT PLEASED!!! We leave to go on vacation tomorrow so I will have to handle this when we get back.

Aug. 15--I called Mrs. Cathy to inform her of Rayden's lack of progress with these new AFOS's. His toes were in the ankle section within two minutes of crawling. Therefore by the time he got somewhere to stand his feet were not in the correct position. She is ordering a new pair with less volume in the ankle and toes section. She is also suppose to be getting the tread put back on the bottoms. This will be the third pair of $2000.00 shoes within a month!!!! RIDICULOUS!!!!!!

Is it too much to ask for a pair of shoes that will hold his feet in the correct position so he can learn to walk? This is my precious angel and he deserves a chance to fly! My heart absolutely breaks for him. I find myself so jealous of other families with children that can walk. I know I shouldn't, but I can't help myself. I just want Rayden to be able to walk sooo bad. I want him to experience all the wonders of being upright and mobile, not just crawling on the floor. Don't get me wrong. I am super grateful for all he CAN do, and even if he NEVER walks I will love him no less. I suppose the aggravation of these AFO's is just causing me to be impatient.

July 22-24, 2016 "First Mini-Vacation!"

I started to list all the wonderful gifts/donations that people have given us in the past but there are so many that I thought I would miss someone. Please know that we greatly appreciate each and every one.

I had some very sweet, loving, caring, giving, and concerned first graders in my class this past year. They were always asking about Rayden, bringing him gifts, making him things, and telling me how much they pray for him. One special child, Maddie Gray Hales, was always asking me if I could take Rayden to the beach with her when she went. Of course, I didn't take it too seriously. At the end of the school year Maddie Gray and her mom handed me the sweetest invitation to take Rayden to the beach. We are so grateful to Rebecca Hales and her family for offering us their beach house for the weekend so Rayden could get his little toes in the sand.

We only took Rayden to the beach in the evenings when the sun was going down, the crowd was gone, and it wasn't so hot. He was not afraid of the water one little bit. He wanted to get down and splash in it. When we put him on the sand, he immediately picked up a shell and tried to eat it! He wanted to sit so close to the water that it would splash on his little toes. He laughed so hard he cried.

 

 

July 21, 2016 "MRI"

Length- 34 in. (75-90 percentile) He's going to be tall!
Weight- 27 lbs. (50-75 percentile) He's really slowed down.
Head Circumference- 49 cm. (50-75 percentile) His head has always been oversized. This is the best percentile ever!

I thought they were going to sedate Rayden for his MRI today, but I was wrong. When I inquired, their response was "It is just a rapid sequence MRI and will only take about 5 min." That may not be a long time for an adult, but it is an eternity for a toddler. As soon as we entered the exam room Rayden started shaking his head "NO". The technicians thought this was funny. I knew they were going to have a hard time. They tried wrapping Rayden in a blanket like he was an infant. He burst out of that in no time flat. They tried putting the cage over his head and he continued to raise up and knock it off. After a lot of tight wrapping and foam pads over his head they THOUGHT they had him. As soon as he started going into the machine and the noises came on Rayden's arms came bursting out again. The technician actually climbed ON the table and crawled IN the MRI with Rayden!! He held his arms down as Rayden continued to kick him in the face the entire time. He just kept repeating "it's alright buddy" over and over. After what felt like an eternity, the table started sliding out and the man jumped off. I couldn't believe he did that. That was priceless! I asked him if that was the longest 'rapid sequence' he'd ever seen. Of course, he laughed and agreed.

August 13, 2015--5.21 cm

July 21, 2016--3.47 cm

Through all of that kicking, and screaming I don't know how they were able to get such good images. We are so pleased to announce something is finally going right! Rayden's MRI showed that his ventricles have decreased almost 2 cm in a year! That means his brain has more room to grow.  In the scan it looks like Rayden only has one super large ventricle instead of two. Dr. Elton says since Rayden doesn't have the membrane that separates the two ventricles down the middle, it looks like one large ventricle. Although his Chiari II malformation has not changed his shunt is still in a good position. He does have some CSF surrounding the exterior portion of the brain though, nothing to worry about. Dr. Elton was very pleased. He said it was the best scan Rayden has had so far. To quote Dr. Elton, "He's doing remarkably well!"

I had so many questions and Dr. Elton took the time to answer each and every one. One of my main concerns was getting an explanation as to why he can feel his feet now when he never has before. Dr. Elton said he has actually seen nerves regenerate from time to time. He also said nerves that go to the muscles are different than sensory nerves. Rayden cannot MOVE his toes which tells us the 'muscle' nerves are damaged. He is FEELING something now when we touch him which is telling us that his 'sensory' nerves may be regenerating! Sounds like one of God's wonderful miracles to me!! There's no doubt in my mind that God has big plans for Rayden. He is going to have a glorious testimony to tell some day.

Dr. Scott Elton & Rayden

Dr. Elton said Rayden was doing so well that his follow up appointment could wait 6 mo. If all is still going well then he would push appointments out yearly. He added that when he puts shunts in as early as Rayden's he has found that they seem to fail within the first 5 years of life. Of course, I reminded him that he had already been in Rayden's brain 5 times!!! He giggled and replied that Rayden is certainly not the norm.