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.
Rayden was the cutest little Mickey Mouse for Halloween. He loved his costume. We had the best time with Rayden this year. He was old enough to actually enjoy Halloween. He was able to wear his costume three different nights! We took him to two trunk-or-treats. Then we took him trick-or-treating to family and friends houses. It didn't take Rayden long to get the hang of it. He has way too much candy!
Oct. 14- (Friday afternoon) Rayden's twister cables finally came in. Now these are a contraption like none I've seen before. There is a wide, white belt that hooks around his waist. This belt has a wide piece of metal inside that attaches to the metal cables that go down the outside of his legs. These cables attach to his AFO's. There are rivets at the knees and hips allowing him to bend them. His belt, cables and AFO's are one giant piece now. Mr. Bob gave us a little tool so we can disconnect them if something goes wrong. He called it the "escape key".
Rayden didn't seem to like them at all Friday afternoon. He continuously pulled on them and cried. We just tried to distract him and redirect his attention. He ended up wearing them the entire afternoon until bed time. It was amazing to see how quickly they turned his toes towards the front. He even crawled with his toes pointing down instead of dragging on the sides of his feet. He can't 'W' sit in them either! So the cables have fixed several issues already! He didn't stand up the first day too well. I guess he just didn't trust these new things on his legs.
One of my biggest challenges was how in the world to change his diaper with these cables on. Just imagine this difficult situation for a minute...!!!
Oct. 15-(Saturday)This was the day of Rayden's B-day party. So we really didn't get to work with him on standing with the cables too much. But he did wear them all day without pulling on them so that's a win! There has to be an adjustment period, ya know.
Oct. 16-(Sunday)We stayed home and really worked on Rayden standing with his twister cables. He didn't seem to like them at first but he soon realized that he could stand without his knees buckling underneath him. It was amazing to see his self confidence soar through the roof. He is still pulling his entire body to a standing position with his arms. He's not using his legs to stand which is why he has such large chest and arm muscles. He is working on these issues in PT. When he pulls himself up to a standing position his feet are very far away from his chest. We are having to advance his feet forward so he can stand up straight. I'm sure he will get the hang of this very soon.
When taking the twister cables off Rayden to get ready for bed, I noticed blood on his left sock. When I took the sock off it revealed an open pressure sore!! I was so upset. When we examined the cables we realized they were loose. They are not suppose to move at all! The left AFO was actually twisting around and around, which means it had been moving and rubbing on his little foot all day. Rayden has no feeling in his feet so he was unaware of this happening.
Oct. 17-(Monday)Of course we used the "escape key" so Rayden could wear his AFO's without the cables attached. He cannot go all day without his AFO's on his feet. He will try to stand and this could easily break his ankles. I called Mr. Bob and he wanted to see him right away. After another two hour drive to Wilmington, Mr. Bob realigned the cables and tightened them well. He said Rayden must be really strong to have overpowered the cables. I have no doubt this kid has super strength!!
Oct. 17-(Tuesday) You've got to be kidding me! After one day of physical therapy Rayden's twister cables came apart!! Yes, apart!!! Mrs. April, the baby sitter, reattached them with the special tool 8 times before I got home. Upon hearing this I immediately took them off only to find that one was higher than the other and one was twisting around and around. They were not tight and were definitely not lined up correctly!! This kid is a HULK!!! Of course, I called Mr. Bob right away. He was so shocked that Rayden could do this. He felt so bad that I had to take off work AGAIN so he agreed to meet me on Saturday to fix his cables. That was wonderful!!! The only problem was that Rayden wouldn't have his cables for three days.
Oct. 22-(Saturday)We met Mr. Bob and his wife in the office to fix Rayden's twister cables. He said he has always just hand tightened the screws on every patient he has ever had. He has never had a child overpower the cables. Here again, Rayden doesn't follow the text books! Mr. Bob decided to torque the screws this time. If "HULK" breaks his cables again Mr. Bob is going to weld them together!
Oct. 23-(Sunday) One day with the cables actually staying on correctly and look at what Rayden can do! He has been able to cruise along the sofa sideways like a crab walk but he has NEVER taken forward steps. In this video you will see that Rayden wants to take his paper towel to the trashcan across the room. He had already done this three times that morning! Michael is holding his hand for stability and I am advancing his feet. He picks up his left leg but his right leg is super stiff so I am advancing it for him.
Rayden has had such a rough mountain to climb to be able to hold his head up, sit alone, crawl, stand, take steps, and be vertical like everyone else. He is now 22 mo. old (almost 2 years old). I realize his mobility is an entire year behind children his own age, but his determination speaks volumes above the rest. Things that come so easily to others, Rayden has to work extra hard to accomplish. And he does it all with that amazing smile! :) I can't even place into words how proud we are of his accomplishments. When he takes his first step without support I believe I am going to just die!
I know it's not officially Rayden's birthday. He was born twice ya know. We decided before he was even born to celebrate his birthday in October instead of December for several reasons.
This year we decided to have a big Mickey Mouse celebration because that is the only thing that Rayden really loves.
I was surprised that so many of our family, friends and loved ones came to celebrate with us. There were a total of 64 people there, if I counted right! Rayden had such a good time playing with his friends, eating 'cake-cake', and talking with everyone. The only thing he didn't really enjoy was everyone singing Happy Birthday to him.
Having a super-busy, little toddler at home consumes all of my time. Not even to mention I started back to work at the end of August so things have been hectic around here. I haven't had time to update the blog as much as I would like. Rayden has had A LOT going on these past few months. Here are the highlights:
1-Rayden has started cruising along the sofa!!!! It's not pretty, but who cares? He is finally getting from point A to point B upright!! Here are three little, short video clips.
2-We FINALLY got a pair of AFO's that will stay on!! (Three pairs in a months time!) When Rayden was getting fitted for these, Mrs. Cathy noticed how his feet turn in even when he stands up. I showed her the video of him cruising along the sofa and she stated that he needed twister cables.
3-We had an appointment with Dr. Cuomo, Rayden's orthopaedic surgeon, at the end of September. She stated that Rayden's tibias are twisted and may need to be broken and replaced during a surgery. She believes the twist is so significant (especially in his left leg) that it is one of the main culprits of causing his feet to turn inward. She also wanted to do another surgery where she places pins in his ankles because the last surgery of removing a portion of his achilles tendons was not successful. She wanted to recast him and go ahead and schedule these surgeries. I disagreed. I showed her how he has finally started to stand and cruise along the sofa. I believe we need to give him some time to develop on his own and see what happens when he can actually take some steps. Every time he starts advancing he has had major regression due to so many surgeries. I believe that if we give him time to learn to walk and THEN do the surgery then maybe he can bounce back quicker instead of having to start all over again! After seeing the video clip for herself, Dr. Cuomo agreed that he is finally making some really big gains and that we should allow him time to get some development under his belt. She ordered the twister cables in hopes that they will help him take some steps without slapping his feet together and help him get some strength in his quadricep muscles. She also encouraged me not to wait too long to do the release surgery because surgery is easier to do when you don't have such a large correction to make. Either way, she stated that we are probably looking at multiple tendon release surgeries over the next several years. MULTIPLE!! WHAT??!!?? I was so angry to hear that because we were under the impression that when she removed a portion of his achilles tendons that they would not grow back. I feel so mis-lead. Apparently the scar tissue from the last surgery has joined the tendon back together and it is pulling his feet inward again. The thought of Rayden having to go through weeks and weeks of casting and surgeries again is just...just... I don't have a word to describe how I feel about that!!!!!!
4- Rayden also had an appointment with Dr. Sanderson, Nephrologist. She believes Rayden's blood pressure is beginning to stabilize but she wants us to continue monitoring twice a week. She also wants him to continue taking the medication another 6 months. On a side note, I wonder if these docs realize how extremely difficult it is to entertain a toddler that cannot get on the floor in such a small space for soooo long. These two docs made us wait forever that day. We arrived at their offices (in the same building) at 1pm and didn't leave until 6pm!!!! I have to say though, Rayden is a champ. And I certainly couldn't do it without my faithful helpers (Nanny, Pamela, Michael).
5-Since Rayden is having such a hard time with the posterior walker, Mrs. Cathy, PT, stated that he needed and anterior one. Therefore I met with a Pacer representative. We ordered a 'cadillac' of a walker. It has all the 'bells and whistles'. It will take about 30-90 days to arrive but I believe once Rayden gets his twister cables and this new walker he will be able to soar. I cannot hardly wait.
6-A dear friend and fellow SB mother, Kathryn Honeycutt, recommended we go see their orthodist in Wilmington, Mr. Bob. Michael and I decided to take Rayden and I think it was a good decision. He altered Rayden's AFO's so he can stand more flat and ordered the twister cables. He seems so sincere, caring, and dedicated. I feel like we will get better service from this smaller facility than UNC because they are super large and cannot possibly remember all of their patients needs. (Just my personal opinion.)
7- Rayden started gymnastics at Elite Gym in Dunn. Of course there are lots of things that he cannot do like other kids his age, but Mrs. Jenny is modifying the circuits to meet his needs. We believe this will help build the muscles in his legs and arms as well as strengthening his core. I was amazed at how well Rayden listened to Mrs. Jenny on his first visit. He seems to absolutely love gym class and we are so very thankful that Mrs. Jenny is dedicating her time to helping our precious miracle.
8-Rayden was having an extremely horrible time sleeping. We couldn't figure out what was wrong with him. He would only sleep 3 hours and then he was up the entire night UNLESS we were holding him in the recliner in his little incline position. We would hold him until he fell asleep and tried to lay him down but the screaming began! This continued all night for several days until I finally felt like something was wrong. This wasn't just a spoiled baby. He spiked a fever and I took him straight to Dr. Chiodo. She did blood work, strep test and a flu test. Everything was fine. She looked in his left ear and it was fine. She looked in his right ear and OH NO!!! She found puss behind his ear drum and he had a red throat. I hate to say it was actually a relief that she found something. If there was no logical reason for the fever we would have to go to UNC to check for shunt malfunction! She placed him on an antibiotic and within two doses he was back to his normal self, and only waking once a night!! That's more like it. Although I am upset that he has his first ear infection, I am joyful that it is not anything serious.
9- Rayden had a speech evaluation this past week. He blew it out of the water!! Two tests scoring 99 and 102!! He can say over 45 words and even some two word phrases. He can make requests for what he wants (puffs, cup, keys, shoes, etc.), answer yes or no questions, can point to body parts (ears, eyes, nose, etc.) and follow simple commands (Put this in the trash. Get your choo-choo., etc.). The only thing he lost points for was naming specific items in a book (which Mommy worked with him for two days and he CAN do that now!!!). The test administrator stated that Rayden scored the highest she has ever seen at his age!!! I would love to go back in time and SHOW those docs that said he would have "no cognitive ability" the power of my God! This child has such a bright future with an incredible testimony.
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--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.
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.
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.
Aug. 13, 2015--5.21cm
July 21, 2016--3.47cm
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!"
Dr. Scott Elton & Rayden
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 canfeel 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. 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.
It has absolutely been a horrible week! Rayden's feet have continued to slide in the AFO's terribly. His feet seem to be too small for them. I have tried thicker socks, gripper socks, and using two of the pringles that go inside them like a tongue in a shoe. I have even put gripper socks over the AFO to try and prevent the carpet from pulling on them. They are just not going to work. Now to make matters worse he has formed two pressure sores on his left foot. (top and bottom)
We decided to just keep the bar shoes on him during the day (without the bar). At least they fit and will keep his feet in the correct position. But they do not give him any support so working on standing is out of the question.
He isn't sleeping at night because he is miserable in the bar shoes. These things are borderline inhumane!! He sleeps on his side but with the bar keeping his feet shoulder length apart his foot is stuck in the air. I know that has to hurt his hips. He is up every 30 min. Therefore I haven't slept either. Rayden has never slept in my bed but I sure tried it this week to get some rest. Something has got to give!!!!
Dr. Cuomo has been in surgery so her nurse's response to all of this is "do whatever makes you comfortable." Well, I'm not comfortable with ANY of this! I'm so afraid he is going to regress. She said to make sure I continue his stretching a lot so maybe his feet will not tighten back up. He jerks and cries when I try. This is new because Rayden has never been able to feel his feet/ankles so why does he act like I'm hurting him? You can see his reaction in this video clip.
When Dr. Cuomo responded to all of my emails (4 days later) she said she thought Rayden was back in equinis, with tight calf muscles and achilles tendons. She believes he will have to have another surgery or do more casting to correct it!!
Just when I thought this was enough to drive me insane, I realized his right foot was swelling. It was so large that I couldn't get the AFO on or the bar boot. Later into the evening it had swollen to twice the size of his left foot. His little toes looked like they were going to POP off! His legs and feet were turning red and hot to the touch. Something else was going on! I sent the pictures to Mrs. Ruth (one of the orthopaedic technologists). She called me back immediately and said Rayden has one of two things, an infection or a fracture.
She said we needed to take him to the emergency ortho department, Ortho Now, to get x-rays and be seen by a doctor immediately. X-rays revealed no fracture, thank God! The doctor diagnosed Rayden with cellulitis and prescribed an antibiotic (Keflex). Hopefully we have caught it before it entered his bloodstream and the antibiotics will work. If not, he will need IV antibiotics in the hospital. WHAT ELSE IS GOING TO HAPPEN!!!! This poor baby can't seem to catch a break! I feel like we take a tiny step forward just to FALL off a cliff backwards!!!!!!!
Rayden was all smiles as we started our trip to UNC today. We have been counting down the past 12 days until Rayden could get these casts off. No matter what the doctor said, Michael and I decided that Rayden deserved a break from casts and they were coming off TODAY!! Of course we were praying that her last ditch effort actually worked and his left foot was in the correct position this time.
In this video clip you can see Rayden's casts being removed. He is always so brave. Most children scream and cry during this procedure. You can see the fear in Rayden's face but he is not screaming or crying. He is the toughest little fellow I know.
Dr. Cuomo said his feet look much better. She is still worried about the left foot though. She wants us to do lots of stretching to dorsiflex that foot. IF we can keep it this way then we will not have to do another surgery although she's afraid that left foot will give us problems.
Rayden got his new superman AFO's for the daytime. He also got little boots with a bar in between to wear at night.
Everything was going smoothly. We were all so happy to be free from casts! The excitement dwindled within 30 minutes of being home though. Rayden started crawling on the floor. After being in casts for 11 weeks straight, his legs were very weak. I picked him up only to notice that his left foot had slid up in the AFO. I knew this was going to cause problems. After re-adjusting it numerous times I decided to send a picture to Dr. Cuomo hoping she would have some suggestions.
After dinner we decided to put Rayden in his little pool. He hadn't been able to even take a bath in 11 weeks, I knew he would enjoy this! It didn't take too long for him to start splashing away!
I thought after this long, eventful day that he would sleep well, but I was wrong!! He absolutely hated these boots with the bar. He woke up every 30 minutes ALL NIGHT LONG!!!!!! He can't sleep! Now what? I pray that he will soon get used to them and that Dr. Cuomo has a suggestion to stop his foot from sliding in his AFO's.
Rayden has been confined to these casts for over 2 months now (9 weeks)! He is so ready to be free. He has started pushing on them and pulling on his toes. He wants OUT!! We have been counting down the days until Rayden can finally get these casts removed for good. That day had finally arrived!! I was really afraid of what would happen though, because I received a call yesterday stating that his AFO's had not arrived! Without something to hold his feet in the new corrected position they would start turning back in (the nature of the beast!). The nurse suggested we just stay in the casts another week while we wait on his AFO's. Of course, we did NOT want to do that. Rayden has pulled his time.He deserves to be free!!!! After some 'confrontation' the nurse decided they would find something in the office to hold him until next week.
We arrived at our appointment on time but Dr. Cuomo was running over 2 hours behind schedule so we had to wait. I didn't really mind. We've been waiting 9 weeks to get these casts removed, what's another two hours? Rayden was the entertainment in the waiting room. He is such a little character. He was crawling around, smiling at everyone, telling them "Heah!" and laughing. Everyone seemed to enjoy watching him and it made the time go by faster. I also got in a little testimonial time as the conversations turned to me explaining his condition, doctor's prognosis, and God's miracles!
Waiting in the exam room for so long is a totally different story. I don't want Rayden crawling around on the exam room floor so we do just about anything to entertain him. A busy little toddler closed up in a tiny room makes some desperate silliness as shown in this video clip.
Rayden was scared to get the casts removed but he didn't cry. He just held his Mommy tight. He's the bravest kid I know! As I was washing his feet and legs I immediately noticed his left ankle was still pointing downward (like he had on a high heel shoe). He even had an indention in the back of his heel. Something was not right. I started stretching it up like we used to do on a daily basis, praying the entire time that the doctor wouldn't have bad news when she saw it. But it didn't work!!!!!! Dr. Cuomo was not pleased with the left foot at all. She believed the continuous slipping of that cast and possibly incorrect casting has caused the scar tissue to heal in the wrong position. She says if we don't fix it very soon the damage is going to be permanent and she fears it may already be too late.
She had planned to put Rayden in the braces (boots) with the bar in the middle just until his AFO's arrived. The right foot is ready for braces but the left one is not. The braces are made for feet that are flat and of course Rayden's left foot is NOT flat right now. Therefore it would cause a lot of skin problems forcing us to remove them. This would leave the right foot without a brace compromising its' progress. (What a mess!)
When I asked her what we needed to do she hesitated for such a long time. I could tell she certainly didn't want to say. She looked up at me and stated that she would have to perform another surgery to release the scar tissue. Tears immediately filled my eyes as she jumped up and hugged me apologizing. "NNNNOOOOOO!! Why does this keep happening?" To make matters worse she thought the best thing to do for now was to put him back in casts for 12 more days as a 'last ditch' effort to fix it. She didn't seem very confident in this desperate final attempt working though. If this does not work, she said we had two choices 1-surgery, 2-just face the fact that his foot will never be right and make special fitting AFO's with one high heel.
Rayden never ceases to amaze me. He seems to just accept things and move on. (I wish I had half of his strength.) He just laid back and fell asleep as they placed casts #21 on his legs. Dr. Cuomo bent his left knee really far in hopes to prevent it from slipping this time. She even put indentions above the knee as another means of prevention.
As I sit and dwell in the fact that my poor baby is casted yet again, and possibly facing another surgery I feel so defeated. I was so excited to finally be able to work on walking with him and now... another set back!!! I just don't understand why these things keep happening. I am reminded that nothing ever goes according to the books where Rayden is concerned. As Dr. Elton told me when his ventricles wouldn't decrease in utero, "Rayden doesn't follow the text books. He writes his own book." I know I can't dwell in the negative and I'm reminded that this is not as bad as some people have it right now. I know all things happen for a reason and God has paved the road he wants Rayden to travel. I just wish his road didn't have to be so bumpy.
A urodynamics study is a procedure that looks at how well the bladder, sphincters, and urethra are storing and releasing urine. It focusses on the bladder's ability to hold urine and empty steadily and completely. It can also show whether the bladder is having involuntary contractions that cause urine leakage.
The last time Rayden had this test done he was only 3 months old and slept through the entire thing. I was really worried about how he would handle being strapped down to an examining table for so long now that he's an active toddler. Rayden was absolutely amazing during the hour long procedure!! I stood beside him the entire time wearing that heavy, hot led vest they make me wear because of the x-ray machine.
The procedure is such a terrible process. They place little sticky monitors all over your bottom and lower belly. They place two catheters into the bladder. One is to fill up the bladder and the other to measure the pressure in the bladder. They place another catheter in the back passage which allows the pressure inside the bladder to be compared with the pressure outside the bladder. I was already sweating bullets in the led vest but then I got really concerned because the first nurse tried three times and couldn't get the catheter into Rayden's bladder. The other nurse got it on the first try though. Once the catheters are in the correct position, fluid runs into the bladder at a controlled rate. During this time the nurses are collecting data on the computer, taking pictures with the x-ray machine and looking for leaks.
Dr. Ross says he has a good bladder but he is leaking quite a bit. She says the urine comes out which keeps the volume low and protects his kidneys. She says it's actually the perfect situation because if his bladder was just sitting there squeezing all day the pressure may shoot high and mess up his kidneys. The downside is she believes he will have extreme difficulties with potty training. His muscle is just not going to be strong enough to hold the urine in. He doesn't really have the ability to empty his bladder either. Of course, we will talk about other options when the time comes. Here again, it's one of those wait and see situations. I'm just thankful we don't have to catheterize him for now and we can just continue doing what we are doing.
June 9, 2016 "Casting #20"
Well "Mr. Houdini" has done it again! He has somehow managed to slide out of his cast for the fourth time!! This one was even glued on! We had to travel to UNC again to be worked in to see Dr. Campion. After the nurse removed the casts Rayden got fitted for some new AFO's. They should arrive in three weeks, just in time to get out of the casts for good (we pray)! While we waited to see Dr. Campion, we had a lot of extra time to examine Rayden's feet. He had two blisters, one on the tops of each foot where the feet and legs meet. They didn't look too bad though. His right foot looked wonderful! I have never seen it so straight and actually pointing up at 90 degrees like a normal foot!
I was very upset when I realized Rayden's left foot was nowhere near 90 degrees! It was almost as straight as his leg! I guess that's what happens when the cast slide down repeatedly!
When Dr. Campion came in he called Rayden 'Houdini' as well, I suppose that's his new nickname, haha! He removed the bandages so we could see his surgical scars. I was really impressed. No redness, swelling or bruising. They looked really good. He did a lot of stretching on the left foot and was actually able to get it back up to 90 degrees! (I just pray it stays that way now.) He proceeded to glue on Rayden's 20th set of casts. Believe it or not, Rayden was so tired that he actually slept through the entire thing!!!!! I told you he was a pro at this.
What a long day. We left home at 8am and returned at 5:30pm. Rayden was wonderful. He actually does really well for a baby being pulled from doc to doc. I suppose he is use to it by now.
1. Orthopaedics- We were not scheduled to see orthopaedics today but last night we noticed Rayden's left cast had slipped terribly (3rd time so far). Even though neither one of Rayden's usual orthopaedic doctors were scheduled to be in clinic, we HAD to see someone because this left cast had to be removed. We saw Dr. Campion. He was very nice and Rayden seemed to like him. After the nurse cut the cast off we were able to see his leg. Of course we couldn't see his incision because it was still bandaged up but there was no swelling and his ankle looked ok. Dr. Campion examined Rayden's ankle and said everything looked good for only 1 week post-op. He said casts slip sometimes but Rayden must be a "Little Houdini". So he used glue this time to put on cast #19.
2. Renal Ultrasound-I can not even believe how great Rayden did with his ultrasound this time. I thought he would cry just because he was having to lie down and be still, certainly NOT something he enjoys doing! He was propped up on a pillow while the technician completed the ultrasound. Every time she squeezed new warm gel on his belly he screamed but it didn't last. I held his hands while Michael fed him little oyster crackers and he just watched the screen. It was over before we knew it and Rayden didn't seem to mind at all.
3. Urology-Dr. Ross said the ultrasound showed a little difference in the kidneys from the last measurement but she's not worried. She is going to follow up with another ultrasound in about 6 months. She was also very pleased that we took Rayden to the nephrologist and got his blood pressure under control. Rayden's high blood pressure is due to his kidneys not functioning properly so she is going to do another urodynamics study in the next couple of months. This procedure looks at how well the bladder, sphincters, and urethra are storing and releasing urine. It focusses on the bladder's ability to hold urine and empty steadily and completely. It can also show whether the bladder is having involuntary contractions that cause urine leakage. She also wants to check his Vitamin D levels the next time we do lab work. She said Vitamin D deficiency is common in children with spina bifida because they are not as mobile and have chronic kidney disease. After examination, Dr. Ross said Rayden's hernia incision and testicles look great after the corrective surgery she did in September. She said he looked incredible!! Being the most loving baby in the world, Rayden had to kiss her several times. It just seemed to melt her heart and she begged to take him home with her!
4. Neurosurgery- Melody was impressed with Rayden's progress as well. His head circumference is 48.5 cm growing 2 cm in 4 months. His shunt was still programmed at 2.0 which is good. She is scheduling a rapid sequence MRI scan the end of July to monitor his shunt though. 5. Dr. Alexander-We discussed getting more physical therapy and occupational therapy. With Rayden having a moderate (not mild) physical delay (only performing in the 10 month range) he says this warrants more therapy. He wrote a prescription to send to the insurance company in hopes they will cover more visits so we don't have to pay so much out of pocket. At our last visit Dr. Alexander gave Rayden a goal of saying two words when he returned. Rayden blew that goal out of the water! He was impressed that Rayden can say 12 words! He also wanted him pulling to stand. Well, Rayden met that goal too, even in casts!!! He wants to see him back in 5 months. Rayden's new goals are to double his words, around 25. He said if he wants extra credit he could even try some two-word combinations. He also hopes to see him taking steps with a walker and scribbling with a crayon. We couldn't check his length and weight because of the casts but he weighs roughly 26 lbs.
6. Occupational Therapy-We were asked if we would allow an occupational therapist student to sit with us during all of our appointments today so he could learn how clinic worked. (Rayden was the only patient they had today with a programmable shunt and he wanted to see that as well.) He was a very nice young man and Rayden showed him all the things he could do. The occupational therapist was impressed with Rayden's fine motor skills as well. She showed us some easy to make activities to build his upper arm strength and refine his finger dexterity that we really like using velcro, wooden blocks, and a peg board.
Rayden, Jaxon, Aaron
Rayden is an amazing kid, but he's not the only amazing kid with Spina Bifida. We have been very fortunate to have met and kept in touch with a few extraordinary families. The best part of our trip today was actually spending some time with them. Rayden enjoyed playing with his little SB friends (Super-Buddies). I believe this was the first time I've ever seen him play without me sitting on the floor with him!
Rayden's bilateral posterior clubfoot release surgery was scheduled for 7:30 am. Since we had to check in by 6:30 we decided to spend the night at the Ronald McDonald House. We haven't had to stay there since Rayden was in the PICU in July. The renovations are complete and it looks beautiful. We went for a walk outside to look around. Rayden spotted the wagon and just had to take a spin. Trying to get him to sleep was a little difficult but he finally gave in around 10pm.
We arrived at UNC at 6:30am, checked in and went straight upstairs. After a quick goodbye kiss to family, Michael and I took Rayden straight into pre-op. Rayden knew something was going on. He DID NOT want the nurse touching him! He said 'NO' to the ID bracelet, pulse oxygen, blood pressure and weight. Poor thing. We spoke with the anesthesiologist and Dr. Cuomo. She reminded us that she would make a v-shaped incision in the back of his ankles so that as he grows the scar will almost straighten itself out. Then she will have to divide the Achilles tendon in
order to reach the other tendons in and around his ankles. She will release ligaments and capsules around the joints and between the bones. This will allow the bones to move into the position they are suppose to go in hopes to ultimately change the final shape of his bones. On her way back out of the ankle she will resect (cut out) a portion of his Achilles tendon, enough that it will hopefully NOT grow back together. She also reminded us that she would make a medial incision as well to release tight tendons on the inner part of each foot. She is worried that his skin will be really tight so we may have to do cast changes every two weeks throughout the six week recovery. After talking with the anesthesiologists and Dr. Cuomo, the nurse took Rayden away at 7:30. Although this is Rayden's 9th surgery, he has never been put to sleep for more than 1 1/2 hours. This surgery was expected to last 3 1/2 hours. I was really worried. I was also anxious to know if the anesthesiologist could tell if Rayden could feel anything.
Michael and I were very thankful family came to support us during this long wait. (Nanny and Papa Bradley, Nanny Jane, Aunt Patsy and Pamela) After eating breakfast in the cafe we still had several hours of wait time. Talking with them made the time more bearable.
Dr. Cuomo came to the waiting room around 11, much sooner than we had expected. She stated that she and the anesthesiologist believe that Rayden could NOT feel anything, which is good and bad. It's good because it will make his post-op care much easier having little to no pain, but bad because this means he has more paralysis than we originally thought. So a blessing AND a curse... Although this is not what we wanted to hear she did follow with some much better news. She was almost excited when she stated his ankles came up super well. So well in fact that she didn't even need to do the medial incisions as she originally planned!! She said his ankles came up to a great position. (more than 90 degrees!) She added that this was the fourth surgery like this she has done in the past couple of months and by far the most satisfying. That sounded great to me. She also stated that his skin stretched beautifully, therefore we only have to recast one time in about 3 weeks. At that time Rayden will be fitted for new AFO's.
I was called back to the recovery room around 11:10. Rayden was just laying there awake looking around. The nurse said that he didn't seem to be in any pain at all. When I got closer he heard my voice and saw that I was there. He immediately reached up and started to moan. Poor baby sounded so hoarse from the breathing tube. The nurses gave him to me and we offered him some juice. His throat was obviously hurting because after only one sip he moaned even more. The nurse gave him some tylenol and went over the discharge papers with me. Even though they believe he is not able to feel anything they are still sending us home with some heavy pain meds, Valiums for muscle spasms, and a stool softener.
When I opened Rayden's diaper bag to get him some clothes he saw all of his paci 'friends'. He just HAD to have them all. He loved on them, taking turns sucking each one as if he were telling them all about his day. Super precious!
Casts #18 are Carolina Blue this time in honor of our awesome UNC medical staff. Although he still has the bend in his knees, I have NEVER seen his feet so straight! I am so anxious to get these casts removed and see his sweet little feet.
Of course, Rayden slept all the way home and another 2 hours after we got there. I suppose the anesthesia had to get out of his system. When he finally did wake up I gave him some Motrin for swelling. He immediately started crawling around on the floor as if nothing ever happened! I'm so relieved that he is not in any pain, but saddened at the same time.
Well after 17 casts, I'd say Rayden is officially a professional!! He didn't cry at all. He just lies there so patiently like a little adult! He even tried to share his paci with nurse Ruth!
Dr. Cuomo put Rayden's casts on this time. She and Ruth made sure to make his knees bend quite a bit. They even used the glue again to ensure that the casts do not slip. Hopefully these casts will not have to be removed until he goes in for surgery.
Dr. Cuomo talked about Rayden's upcoming surgery next week. She discussed some of the steps as to why it will take about 5 hours!!! It will take a while to get him to sleep. Then she will position him on his belly, which will take some time to get him just right. Then she will spend about 1 1/2 hours on each foot. Followed by casting and wake up time. After she examined him she decided to make two incisions instead of one. 1- In the back to open up the capsule of ankle joint and remove a section of his achilles tendon. 2- Even though he has had lots of casting, there is still too much tightening that is folding his feet inward. He will need another incision on the inside of both feet, in the center, to release this tightness.
We also discussed Rayden's ability to feel his legs but NOT his ankles, feet or toes. She stated how she works with her anesthesiologist during surgery. If his heart rate elevates during surgery she will know that he may actually have more sensation than we are aware. This lets her know more about how much he is REALLY capable of feeling. What we feel on the outside is not NECESSARILY what we feel on the inside! She will relay this info to us after surgery and of course will send him home with pain medication. I am anxious to know what his level of feeling may actual be.
May 10
Rayden had an appointment with Dr. Sanderson, nephrologist. She actually mentioned he may grow out of high blood pressure!!!!! GREAT NEWS!! His goal for the top number was less than 110. After only one medication adjustment these past three months he has steadily been under 110. She wants us to continue monitoring his blood pressures twice a week. I was thrilled when she stated that she was actually on call at the hospital on Rayden's surgery day. She wants me to tell the anesthesiologist that she will be there if there are any concerns and she will be sure to check on him. That was reassuring.
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