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.
*Length-25 1/2 inches *He is in the 17th percentile for his length and weight.
Rayden LOVES his ball. He has actually started folding his little fingers around it himself! He brings it straight to his mouth and cries when he drops it. I'm so happy that he is becoming more aware.
Rayden's therapist, Mrs. Emily, has been working with him to prop sit. He is actually getting the hang of it too.
I am often accused of 'spoiling' Rayden. That I must 'sit and hold him all day long!' But I assure you that I do NOT! Although I don't sit and hold him, I DO work with him all the time. Therefore he is accustomed to me being around him all day long. He doesn't seem to like it when I walk away from him. I thought he would never play independently. This week I was able to walk away and he played by himself for about 30 minutes!! I didn't know what to do with myself!
May 10- Rayden's first Mother's Day was wonderful. He was the youngest baby in church so we received a gift card to Cracker Barrel! Alex went to church with us but Justin was unable to attend so he is not in the picture.
Although Rayden cannot sit up by himself, he enjoys sitting up with help and looking around. He has become so aware of his surroundings.
May 11-Rayden has gotten so big. We decided it was time for him to graduate from the bassinet to the pack-n-play. He loved his bassinet so it was very hard to watch it go. He filled up every inch of the bassinet so he looks so tiny in the pack-n-play.
May 13-Rayden's Occupational Therapist, Michelle Willis from Wilmington, came for a visit. She only comes once a month so she was amazed at his progress. She mentioned making him some thumb splints to help hold his thumb out. He still tucks them inside his fists. This will not allow him to grab toys or brace himself when crawling so we must help him correct this. She rolled up a pair of his socks and placed them inside his hands like little dumbbells. They help push his thumbs out. He looks like he is lifting weights. It is so cute.
May 14-Michael taught Rayden how to 'blow-spit.' I really have no other word for it! He looks like he is trying to drive a car. It is adorable. He slobbers all over the place, but I laugh every time he does it. You can watch him in the video below or follow this link.
https://www.youtube.com/watch?v=n5zBZWJ6Sdk
May 16- Rayden really enjoys outdoors. He loves to sit on the swing in the evenings when the sun goes down. He also enjoys riding on the golf cart with Nanny. Although it puts him to sleep within minutes! May 19- Since Rayden enjoys sitting up so much, Mrs. Emily (PT) has started helping him learn to 'prop sit.' He sits with his legs crossed and props himself up with his hands. Of course, a challenge is making him hold his thumbs out! He wants to just 'fist' everything! We have introduced his Bumbo seat twice now. He still seems to be a little too small for it, but it won't much longer.
Dr. Chiodo says that Rayden is progressing wonderfully. She could not believe when she walked into the exam room and he was sitting in my lap holding his head up. He weighs 13 lbs. now! He drinks 5 oz of milk every four hours. Although he is not getting rice cereal in his milk, he has started sleeping 8 hours straight at night! That thrills me to death! He is such a happy baby. Dr. Chiodo thinks he may be cutting teeth because he is slobbering and chewing on his hands so much.
Rayden has Physical Therapy twice a week with Mrs. Emily Barefoot. He really likes her. They work on so many things but Rayden smiles through it all! She wears him out! Every time she leaves he falls fast asleep. He has made so much progress.
Rayden has been looking at his left hand. It is so adorable. He will put the entire thing in his mouth! He even puts his fingers down his throat and gags himself sometimes. We have been trying to show him that he has two hands. We will hold his right hand up in front of his face with his left hand. We will clap them together and put toys in that hand as well. He finally noticed his right hand on May 5. I cried!! He actually grabbed his cow with his right hand while we were shopping! He is moving right along!!
Rayden sure is happy to have his big brother, Alex, home from college. He gets loads of attention now!
Rayden had three appointments this week as well as Physical Therapy twice.
1-Orthopaedics- I was so convinced that Dr. Narotam would allow Rayden to receive his braces today. (The shoes with the bar in between) I have been doing exactly what he said. "Continue wearing ankle splints 23 hours a day with aggressive stretching of the ankles." Every time I change his diaper I stretch his ankles! (That's every two hours!) I hold his foot with his toes pointing towards his head for 20-30 seconds at a time and repeat 3-4 times per session. Then I hold his foot to the outside as well. But Dr. Narotam decided that Rayden needed to wear the splints a little longer. He says his ankles are more flexible, but not quite where they need to be. He wants him to come back in four weeks to see another orthopaedic doctor for a second opinion. They will decide together whether Rayden will need additional surgery on his feet or not. The only problem now is Rayden's splints are a little too tight.
2-Neurosurgery- We saw Melody Watral, CPNP-PC, Dr. Elton's nurse. Rayden's shunt setting remained the same at 1.5. His incisions are looking better and his fontanel is not bulging or sunken in. Although he looks and acts like a new child, I did have a few concerns. (1) I asked about the BB sized knot under his lower incision. Melody thinks it is a lymph node. (2) Rayden has been aspirating (breathing tiny bits of food, fluid or saliva into the lungs) more than ever when he drinks a bottle. It sounds like he desperately needs to cough! This is a side effect of Chiari II Malformation. I asked if his MRI showed if his Chiari had decreased or not. Melody said she would have to ask Dr. Elton. In the mean time Maya called his Gastroenterologist for advice. She is changing his reflux medicine from Prilosec to Prevacid. Maybe this will help. (3) The left side of Rayden's skull is higher than the right. I was wondering if this is going to cause a problem down the road. Here again, Melody said she would have to ask Dr. Elton. From now on, I'm going to make sure we schedule our Neuro appointments when he is there!!!
Maya always comes to our appointments at the hospital. We love to see her and Rayden is starting to really like her as well.
3-Occupational Therapy- Courtney made Rayden some new Thermoplastic AFO Splints with a camouflaged strip across the front. So adorable!
4-Physical Therapy- Rayden's therapist is Emily Barefoot. He really seems to like her. The first time she worked with him she had to give him two 'Mommy breaks'. But the second visit he worked the entire time! They are working on head control, tummy time, sitting up, rolling over, eye tracking and hand grasping. They are doing ankle and thumb stretching as well. That's a lot for a 4 mo old! He has made huge progress in only two visits (but Mommy works with him EVERY day so does that count?)
*Weight-13 lbs. 14 oz.
Rayden LOVES his ball. He has actually started folding his little fingers around it himself! He brings it straight to his mouth and cries when he drops it. I'm so happy that he is becoming more aware.
