May 23, 2015 "5 months old"

Rayden is 5 months old!!

*Weight-13 lbs. 14 oz.

*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 18, 2015 "May Happenings"

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.

May 9, 2015 "Update"

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!

May 5, 2015 "This boy is AMAZING!"

Here is a video clip of Rayden rolling over from belly to back! 

TAKE THAT SPINA BIFIDA!!!

If you can't view it try following this link. 

https://youtu.be/ED3WwIw0RRE

Here is a video clip of Rayden holding his head up. 

If you can't view it try following this link. 

https://youtu.be/wOaLVqKOKuo

Please leave a comment letting me know if you can view the clips or not. Thanks. 

May 1, 2015 "Checkup"

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?)

April 24, 2015 "Rayden can talk!"

Rayden has gotten really vocal after he finishes a bottle.

April 23, 2015 "4 months old!"

Rayden is 4 months old!!! 

*Weight-12 lbs. 6oz
without the casts.
*Length- 24 in.
*Head- 43.5 cm.
*He is in the 10th percentile for his weight and height.

We sure have enjoyed spending time with Aunt Margaret this week. She went with us to get Rayden's new splints on Monday. She truly advocated that Rayden needed more to eat, haha! He really seemed to agree with her. I'm so glad they were able to spend time together.

April 17, 2015 "Surgery #4-VP Shunt Revision"

There have been so many things going on lately that it's getting difficult to keep Rayden's blog updated.

April 8-Rayden saw Dr. Chiodo, his pediatrician. He weighs 12 lbs. 12 oz. with the casts. I have been so worried about the shape of his head. She told me he had plagiocephaly, more commonly known as 'toaster head'. She instructed me to stop worrying about it. She says that when he starts sitting up his head will reshape. I hope she's right.

Over the weekend I noticed Rayden's left cast had slid down. I could no longer see his toes. Since we had other appointments on Monday I figured I would call Dr. Narotam that morning and let him know Rayden needs to be seen. We noticed he had a hard lump in his neck along the shunt tubing line. There was also some fluid pooling around the shunt cavity. This is extremely concerning so I figured I would call Dr. Elton Monday morning as well.

April 13- On the way to Rayden's two appointments at UNC I made those phone calls. Ann, Dr. Narotam's nurse, scheduled Rayden to be seen after his other appointments. Gretchin, Dr. Elton's nurse, informed me that they would be off site but I needed to page the pediatric neurosurgeon on call to see Rayden. So now we have 4 appointments today!

1-Ophthalmology- Dr. Gertsch reports that Rayden no longer has any optic nerve edema (swelling)! Praise God!!!! On the other hand, he is concerned that Rayden is not tracking like he should and seems to be farsighted. He says it's too early to tell if this is a problem or just slow development due to prematurity.

2-Gastroenterology- Kathryn Bauk, CPNP, examined Rayden. She is excited that the Prilosec is working so well to control his reflux. She even took him off the Zantac.

3-Neurosurgery- The neurosurgeon on call seemed to dismiss my concern about the lump in Rayden's neck. He continued to say he thought it was a lymph node. I knew it was not normal but maybe it was alright. He seemed more concerned about the fluid pooling around the shunt though. He took a picture on his cell phone and sent it to Dr. Elton then sent us on our way. He said Dr. Elton would be in touch if he wanted to see us.

4-Orthopaedics- As we were waiting in the lobby to see Dr. Narotam, the neurosurgeon we just saw called my cell phone. He stated that Dr. Elton was extremely concerned and wanted Rayden admitted into the hospital right then to do an MRI and X-Ray, with possible surgery on Wednesday. That sure threw me for a loop!

When they cut Rayden's left cast off I could not contain my tears. His foot looked deformed! It was so puffy and red. There was a terrible pressure soar on the top. How could this happen? We were on our last set of casts!!! I was so upset about this setting his progress back. Dr. Narotam seemed upset too. He said he couldn't put another cast on it right now because he needed the skin to heal first. So he sent us to the hospital to get Thermoplastic AFO splints.

Lisa Bostic started molding his splints right there in the lobby as we waited to be taken up to Rayden's room on the sixth floor. The splints are made of plastic that is heated and molded around his feet. There are strips of velcro on the bottom that hold the strips of felt in place fastening the splint to his feet. They look like little brown boots.

Soon they wheeled us off to X-Ray and MRI. Rayden doesn't seem to mind an MRI but he sure hates the X-Ray. He has to be strapped to a board and held in lots of uncomfortable positions. What a long day!!

April 14- Dr. Elton and his team arrived early to report the news. When Gretchen picked Rayden up Dr. Elton immediately saw the hard lump in his neck. He believes the fluid is clogging in or around the tube. (I knew it wasn't a lymph node!!) He informed us that the MRI showed smaller ventricles and more brain expansion!! I know God is answering our prayers. Although this was WONDERFUL news, the X-Ray revealed the shunt was malfunctioning. He needs to 'explore the shunt.' Surgery is scheduled for Wednesday. I can't believe my baby is having to go through brain surgery AGAIN!!!

For some reason everyone seemed to have a very difficult time finding a vein to start Rayden's IV. The nurses didn't even try. They called in the special IV team. They stuck him twice but both veins blew. I picked him up off the bed and told them that anesthesia would have to get his IV when they put him to sleep because this was pure torture!

April 15- They took Rayden away for surgery at 3:00 pm. It absolutely broke my heart watching the anesthesiologist take my baby away. I was so afraid he would be traumatized if they strapped him down to a table before they put him to sleep. She promised me she wouldn't do that. We all cried as she walked away with Rayden. The waiting was pure torture. Dr. Elton told us he would come to the room as soon as he was finished. After two hours with no word, I was really getting upset. I asked the nurse to find out something and she said Rayden was in recovery. Dr. Elton had been called to another surgery so we didn't hear any results until late in the evening.

They allowed Michael and I to go in the recovery room to see him. I spotted him immediately because his frog pacifier was sticking out above the blanket. The nurse allowed me to hold him and feed him two bottles of Pedialyte. He was covered in betadine and had little cuts and pokes all over. There were five staples holding the bandage in his head! My poor baby looked so pitiful. He would randomly scream out in pain which absolutely broke my heart. When we got settled in his room the nurses gave him antibiotics in his IV, Oxycodone and Tylenol. Soon he fell asleep in my arms. Dr. Elton came just after Rayden fell asleep. He stated that he changed the catheter that enters his brain with an adult sized one. He also changed the valve that pumps the fluid. The down stream tubing was fine so he did not have to replace it. I pray that he never has to enter my baby's brain again!!!

Rayden continued to have a rough night with the pain, noise and nurses waking him up. I really had to get angry with them all to allow him to rest.

April 16- They discharged us around 1:30 pm but we had to go over to Dr. Narotam's office to see what he wanted to do about Rayden's feet. His legs were still swollen from all the fluids given to him during surgery so he decided just to leave the splints on until Monday. He stated that he hated to give us more bad news, but he really believes he will have to do an additional surgery on Rayden's feet. I'm just going to pray real hard that God intervenes...

April 5, 2015 "Easter"

Rayden's First Easter

I believe Rayden had a special conversation with God before he was sent to us. I often look at him and wonder if he remembers his time with God, if he knows his purpose. I especially wonder this Easter morning if he spoke with Jesus about His time on Earth. Maybe I think too deep, but Rayden is such a miracle to me and I KNOW God had a hand in his life. 

*Thank you Jennifer Williamson for the Easter outfit. Rayden looks so adorable in it.
*Thank you Denise Boggs for the Easter hat, although I'm not too sure Rayden wants to wear it today!

April 4, 2015 "Friends of Rayden"

FRIENDS OF RAYDEN

Pork Shoulder/Bake Sale

April 4, 2015

SO MANY THANKS FROM THE BRADLEY FAMILY!
WE LOVE YOU ALL!!!!!!

April 3, 2015 "Last set of casts!!!"

Rayden had 4 appointments this week!

1-Cast #11
When they remove Rayden's casts we always drape the sheet over his face to protect him from the plaster pieces. He is fine as long as he has ducky.
Although he was fine with the removal part, he actually threw a fit with the recasting this time. I think he is becoming more aware that the casts limit his mobility in his knees. He doesn't like it when Dr. Narotam makes him keep his knee bent and still until the plaster hardens. This makes us think that he has more feeling than they originally believed. He is so strong! I'll be glad when he is free from these casts! Dr. Narotam stated that his mobility is wonderful and he does not believe that he will need additional surgery on his left foot at this time! Praise God! He stated that clubbed foot tends to return later in life so he may need to be recasted or have additional surgery in the future but we will cross that bridge when we come to it. For now we are thankful that he will soon come out of these casts!

2-Neurosurgery
We take the trolly bus over to the hospital when we have multiple
appointments in one day. This prevents us from paying for parking two times. Melody Watral, Dr. Elton's nurse, adjusted Rayden's shunt to 1.5. Now it will not drain as fast and hopefully the sunken in part of his head will not be so noticeable. His head circumference has decreased to 42 cm.

3-Pediatrician
Rayden weighs 12 lbs. 8 oz. with the casts. He has started 'talking' this past week. When Dr. Chiodo picked Rayden up to examine him he started talking to her. She was amazed at how alert and aware he has become. He is meeting and exceeding all expectations!

4-Casts #12
My sister and niece, Patsy and Pamela Lee, went with us to the orthopaedics office this time. Rayden received his last set of casts!!!! While Rayden had both casts off at one time and we seemed to have a few minutes, I tried to see how much feeling he had in his feet and legs. They originally said he did not have any feeling from the knee down. I started pressing my fingernails in him to see when he would jump. I started at his feet and worked my way up. Just as I passed his ankles he jerked his legs away!! That's not knee down paralysis! That's only ankle down paralysis! My God is AWESOME!!! I can't help but believe that it will only get better with more time! Below is a video of Rayden's feeling in his feet/legs.

March 30, 2015 "Family"

Rayden was so excited to meet his cousins, Chandler and Colin, for the first time. They live in Alabama and were not allowed in the hospital when he was born. They were so sweet. Chandler read Rayden a story and held him twice. Colin loved Rayden and kissed him a lot.

Rayden seemed to enjoy Aunt Katie feeding and holding him. He got some good sleep in her arms! 
Rayden got the royal treatment from his Uncle Jeffery. He drew some fancy artwork on his casts.