Rayden sees 6 different specialists during these SB Clinic appointments (PT, OT, Orthopaedics, Neurosurgery, Urology, and Dr. Alexander). Most of Rayden's appointments went great today. There were just a few concerns (below).
Dr. Alexander says Rayden seems to be right on target with his developmental milestones. He weighs 35lbs. 7.9oz without his AFOs (41st percentile) and he is 3'6" tall (79th percentile). His blood pressure was 116/51 and his BMI is in the 7th percentile, which is exactly where Dr. Alexander wants him to be. In other words PERFECT!! He did make two suggestions. 1-When he is 5/6 years old, we may send him for neuropsychology testing to see how he best learns. 2-His chest shows signs of pectus excavatum but we will continue to monitor this over the next several years as these do not typically require interventions until 10-15 years of age.
Melody from neurosurgery says Rayden is doing fantastic but they plan on doing a sedated MRI without contrast of his brain and total spine to assess for syringomyelia and a shunt series X-ray in February.
Dr. Ross, Urologist, says Rayden's latest renal ultrasound looked great although there was some bladdar wall thickening. Apparently that is typical and normal for people with SB but not cause for alarm right now. She wants us to get Rayden a daily multi-vitamin with iron because his blood work showed his iron was low. She is also concerned that the Peristeen enema isn't cleaning him out as good as before the surgery. (His last x-ray on Feb. 1 showed a "moderate colon burden") She wants us to try miralax daily, maybe after school to prevent any accidents during school. It's one of those 'play around with the dosage until you get it right' kind of things.
Everyone's main concern seemed to be his toe. I honestly have no idea how this happened, but I believe he scraped the tips of his toes on the steps of the pool during aquatic therapy. Apparently sores on SB patients can become very serious very quickly, especially because Rayden doesn't have the best blood circulation down to his feet. If it continues to get more red over the next two days then he will need an oral antibiotic. Of course, no pool or bathing for a while either.
Welcome to Rayden's page. Here you will find a story of our sons journey with Spina Bifida. There have been many challenges and struggles through the years but it's been worth it! I have tried to keep this blog updated. It might be easier to navigate by using the side bar and looking for specific dates or posts. You can even use the search engine for something specific. I welcome comments as well.
Saturday, February 16, 2019
Tuesday, February 12, 2019
February 6 and 11, 2019 "Aquatic Therapy"
Mrs. Jenn is a wonderful therapist. |
Mr. Josh is a wonderful therapist. |
Rayden's first two Aquatic Therapy visits were AMAZING!! His two therapists, Mr. Josh and Mrs. Jenn, are absolutely wonderful. There are no words to describe how it felt to see Rayden actually move his legs after being immobile for so long. His therapists had him kicking his legs, bending his knees and pushing off the wall, standing up on the steps, jumping out of the water by pushing on their legs, pushing with his arms to look for treasure, and catching, hitting and kicking the ball. Rayden doesn't even realize he is working. I know this kind of therapy is just what he needs to build his muscles so they are able to hold his bones in place when he is finally released to bear weight again. Watch out world... Rayden is gonna break another record!!
Kicking the ball. |
Catching the ball. |
Monday, February 4, 2019
February 1, 2019 "Post-surgical visit"
Just to lay down some background...Rayden has not left our house in three entire weeks. I mean he hasn't even been outside!! Four weeks prior to that, he only left a handful of times just to ride around in the truck to get some air. So for a total of SEVEN weeks this child has not been out of the house except to have surgery. Although Rayden has been through so much prior to this, NOTHING has compared to the pain he endured with this 12th surgery (Hips). Therefore just talking about going back to the doctor made him shake all over and cry. We had to do a lot of coaxing and promising that the doctors would not hurt him just to get him into the van even though I knew he didn't really trust us. I knew this was going to be a very rough appointment!
Normally Rayden does well, but I honestly believe with all my heart that he had some form of post traumatic stress because he absolutely fell apart when we rolled him into the examining room. I mean red face, tears flowing, shaking like a leaf, hands over his mouth, just pitiful!! I don't think I've ever seen him like this before. Alex has always been able to calm him down but not this time! Nothing was working. Even the nurse thought he was having an anxiety attack! I told them just to hurry up and cut the casts off because just waiting for him to calm down was not going to work.
Luckily, when he realized the casts were coming off he calmed down a tiny bet. The nurse even let him 'crack' the casts open with the tool. Another problem arose when he found out they were not throwing them away today. He had to have them wrapped back on to keep the feet in the correct position until he got his AFO's from our orthodist in Wilmington tomorrow. Just too much for a 4 year old to understand!!
This was the first time I had seen his feet since the reconstructive surgery seven weeks ago. The incision goes along the backs of each foot ALMOST ALL THE WAY AROUND!!!!!! It begins at the outside ankle, makes a 'V' shape in the back, and then continues down the inside of the foot half way to his toes! The only part of his foot that wasn't cut was the very front! There were pins sticking out of the tops of his feet that were buried all the way to the bone. It was actually a little shocking to see for the first time.
Ruth pulled the pins straight out the tops of his feet with no resistance. I was so relieved when they just came right out! There was a tiny bit of bleeding from the hole but nothing a bandaid couldn't fix. Alex was trying to distract Rayden and was shocked when I told him they were already out!
After seeing how great Raydens feet looked, Dr. Vergun wanted to see his hip incisions as well. She thought all seven of his incisions looked phenomenal. She said he was healing beautifully and was very proud of his progress. I told her about the only issue we encountered. While Rayden was still in the hospital she told us that he didn't have to use the abduction pillow. It was mainly for his comfort. So one day this past week after he had gone the entire day without using it, we thought he could sleep without as well. He woke up screaming "My legs hurt!!!" It was horrible. I turned on the light to see that his left leg was turned inward and he couldn't move it back by himself. When I moved it back there was no resistance. It was like picking up jello!! I put his pillow back between his legs and he went back to sleep. Dr. Vergun didn't like the sound of that and was worried that his hip had come out of joint. She ordered an x-ray. Thankfully everything looked perfect!
She stated that Rayden did not need to use the abduction pillow during the day but to continue using it at night a little while longer for his comfort. Absolutely no weight bearing, walking or crawling, for another three weeks. We can begin GENTLE range of motion/stretching exercises at home. She also wanted us to begin aquatic therapy to build his muscles and ligaments BEFORE allowing him to put weight on his bones in hopes that they will be strong enough to hold the bones in place. After doing aquatic therapy for three weeks she wants to do another x-ray before allowing him to bear weight. This is an extremely lengthy process but in the long run, when you think about the rest of his life...it's not that long at all!
We took Rayden to Wilmington to pick up his AFOs from our awesome orthodist, Bob, on Saturday. Yes, Saturday! Bob is a wonderful man and will meet the needs of his patients wherever, whenever need be! Rayden's post traumatic stress began to kick in when we got there as well but Bob quickly nipped that in the bud. He took Rayden's casts off and threw them across the floor making Rayden laugh. He dropped all fear and began to enjoy his visit. I was relieved to see this. Bob even gave Rayden a present, his very own big boy cup. Rayden's new AFOs are different than he has had before. There is less plastic around his leg and more flexibility. Since he had the surgery to straighten his feet and legs he will not have to use twister cables, therefore Bob adjusted his AFOs to reflect that. The only difference right now is Rayden has to wear his AFOs all the time except to take a bath, even in his sleep.
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