December 25, 2016 "Christmas"

Rayden's second Christmas was wonderful. He actually enjoyed visiting Santa, unlike most children his age. He was eager to open presents and loved everything he received. He is such a joy.

Out of all the gifts Rayden received for Christmas and his birthday, this hand-me-down grill with food was his ultimate favorite.

December 23, 2016 "Second Birthday!"

We celebrated Rayden's "official" second birthday with a family dinner at home. (Party was in Oct.) Alex brought him some Duck's Doughnuts. We let him pick out which one he wanted. He almost ate the entire thing!! He loved playing with his brothers and new presents from Uncle G.

December 21, 2016 "Walking videos"

Dec. 4-(7 weeks with cables)

Looses his balance a little. 

Dec. 11-(8 weeks with cables)

Gets walker stuck. 

Dec. 21-(9 1/2 weeks with twister cables) 

Listen carefully as he says "I'm gonna get you Momma. I'm coming." 

December 16, 2016 "Two appointments"

1-Pediatric Orthopaedic Surgeon

Patients at UNC are always seeing medical students, interns, and residents. We don't usually put a lot of thought into what these people say because they are NOT the actual doctor. But this particular intern, Katie, had some really good insight. After her examination she stated that Rayden's knees do not want to go all the way straight. His right foot turns inward more so than the left. It also has a bone that sticks out which she believes is the end of his fibula. She believes a posterior tendon release surgery is not needed at this time because his dorsal action is really good. She believes his tibialis anterior tendon on the top of his foot may be pulling too tight causing his feet to turn inward. She thinks we need to transfer THAT tendon to a more lateral position to redirect the pull not the posterior tendon.

Dr. Cuomo, pediatric orthopaedic surgeon, actually saw Rayden walking down the hall with his walker. (We have to keep this toddler occupied somehow!!) She seemed amazed at how much the twister cables have improved Rayden's ability to stand and walk. The fact that Rayden will actually stand up flat, on the bottom of his feet, when he doesn't have his cables on is really amazing. After examining his feet she said he was doing so much better than she thought he would. She actually stated, and I quote, "He is looking darn good!" Although he is more flexible now than he was after his last surgery, thanks to the twister cables, they are not going to fix his problems. Rayden has tibial torsion. This means his tibia bones are rotating inward causing his feet to turn inward as well. Dr. Cuomo said the twister cables are forcing his feet straight for now but as he gets older and stronger they will not work any more. He has already broken them 8 times in the past two months. His body will continue to fight them and we will eventually have to do the surgery. She stated that when kids are making such big motor gains, like Rayden is right now, she doesn't want to do a surgery that will only set them back. The surgery he is needing will require cutting and repositioning bones preventing him from walking for quite some time. Therefore she would rather allow his brain time to explore and understand motor control. When the equipment is holding him back or we have gotten tired of breaking the equipment, then she will do the surgery. The surgery will fix his bones to achieve the same result the twister cables are doing. Although we are upset that he will have to go through surgery again in the future, we are relieved that it is not right now. Dr. Cuomo wants to keep a closer eye on him than other patients. Therefore we will return in four months. In the mean time, she has prescribed him some new AFOs, shoes to go over them, and thicker twister cables.



2-Pediatric Opthamologist
They began by using picture cards to find out what Rayden could see. They said this is the earliest vision test. I'm not so sure it gave them ANY information because he was NOT cooperative at all. A two year old does not take kindly to patches over their eyes! Especially Rayden, who HATES stickers!!

Rayden has been turning his left eye outward sometimes for the past two months. I brought this to the attention of his neurosurgeon who recommended we go see the opthamologist. Dr. Grace, opthamologist, stated that his eyes are lined up and she didn't see anything abnormal. His nerve pressure is normal as well. When I showed her the picture, she began to understand what I was talking about. She called it Intermittent Exotropia, pretty much the opposite of what he had previously. This can be totally unrelated to anything so at least we are not looking at more pressure on his brain. Since it is not something we see all the time her recommendation was patching. She wants us to place a patch over his right eye (good eye) an hour a day to force the left eye (drifting eye) to work harder. She said the eye is not sending the correct signals to his brain if it is drifting. This will eventually make the brain only trust the right eye and the left eye will stop working. The brain is pretty powerful!
She also stated she does believe he has good vision but she's not sure the vision is equal in both eyes. She thinks his visual field may be blocked which is why he turns his head sometimes to see things. She wants to see him again in four months as well.

December 11 "Breaking twister cables"

These are Rayden's twister cables. 

 

He received them Oct. 14, 2016. 

Since then they have broken 7 times and counting...

1-Oct. 16-Cables came loose allowing the AFOs to twist around and around. 

2-Oct. 17-Cables came detached at the screws. 

3-Nov. 16-Rivet that holds cables to AFOs broke. 

4-Dec. 1-Broken belt loop. 

5-Dec. 4-Broke coils- We had to duct tape them back together. 

6-Dec. 9-Broken in half at the screws again. 

7-Dec. 11-Broke loop on AFO. 

December 1, 2016 "Our Little Miracle"

I thought it would be good to show Rayden's progress since he received his twister cables in one post. It amazes me every time I sit and think about how far he has come. Something that comes so easy for others he has to work so very hard to achieve. But he does it with the biggest smile, never complaining. He is full of determination. And the doctors said, "He may never walk."

🎗Take that Spina Bifida!!!!! 🎗

1-September 24. (BEFORE twister cables) You can see how his feet and legs go all over the place. At one point his foot is actually turned around backwards.

2-October 23. (1 week with twister cables) Taking steps while Mom advances his feet. At this point he had NEVER walked with his feet forward! He had only walked sideways along the sofa. He is so proud of himself. 

3-November 6. (3 weeks with twister cables) Taking steps with the toy walker. I have to keep reminding him to take steps or he will just push the walker. 

4-November 22 (5 weeks with twister cables) Walking with gait trainer. I am NOT touching him. I'm just stabilizing the walker. Notice how brave he has gotten toward the end of the video. He actually steps away from his walker! 

5 weeks with the cables and our little man is actually walking!!!! Yes, he needs assistance, but he is upright and mobile. I am so proud of his hard work. 

Thank you Mrs. Emily (PT) and Mrs. April (baby sitter) for working so hard with him too. 

November 10, 2016 "SB Clinic Appointments"

 

Clinic Day is very long. But Rayden is always smiling and spreading joy to every person we meet. In every waiting room he found someone to 'talk' to making them smile. There is no doubt in my mind that God gave him the gift to make others forget their worries and just smile-if only for a minute.

1-Renal Ultrasound
During the renal ultrasound Rayden has to lie on his back and rotate to both sides while the technician takes pictures of his bladder and kidneys. This takes a while so I was really worried that Rayden would not cooperate. I was wrong!! He actually enjoyed looking at the screen because the technician kept telling him she saw Mickey Mouse in his belly. He started pointing at the screen saying, "Me Mouse" and laughing. It was beyond adorable! My heart sunk though when the technician left to get another technician. All I could think was 'something was wrong'. My mind flew back to the day he was diagnosed and the technician left to get the doctor who told us he had SB. I suppose that memory will always be fresh in my mind. Little did I know that she was a student and had to get her work approved.

2-Blood Work
I was the most worried about the blood work. I absolutely HATE to hold my sweet baby down while they poke him and he screams with crocodile tears pouring down his cheeks. I was super impressed with the phlebotomist though. She made sure she found the best vein and only stuck him one time! She filled up three vials as fast as lightning too.

As soon as we arrived at the SB Clinic they informed us that Dr. Alexander had just left very sick so we didn't get to see him. 

3-Urology
Dr. Ross walked in saying, "Oh my goodness, he's amazing! I can't fix things that aren't broken." Of course that sounded great to me! His renal ultrasound was perfect! She was impressed that he hasn't had any urinary tract infections and his poop regimin seems to be working without medicine. The blood work should come back in a few days but she said she wasn't at all concerned about his vitamin D levels because he is active.  

3-Neurosurgery
Rayden's head circumference was 49.7 cm. only growing .7 cm in four months. His shunt was still set on 2.0. All seemed fine with his shunt, thank God. The only issue was that we have noticed his left eye looking away while his right eye is looking straight ahead. It does correct itself but has been happening more frequent. Melody seemed concerned that this is what they call 'lazy eye' and it may affect his vision. She wants us to see Ophthalmology right away. 

5-Orthopaedics

Rayden weighed in at 30.3 lbs. We haven't seen Dr. Narotam since May because Rayden has been under Dr. Cuomo's care after his last surgery. She doesn't come to clinic so we saw Dr. Narotam. We really like him so it was good to see him and catch up. He was sooo impressed with how different Rayden's feet look now. Not necessarily due to the surgery but more a result from having the twister cables on for the past month. He couldn't believe how much he has benefited from them. He said his feet are no longer stiff, they go to neutral without any problem. He actually said he has never seen his feet so straight either. He seemed a little confused as to why Dr. Cuomo wants to do another surgery, but she hasn't seen him since he's had the twister cables. Of course the cables will not fix his tibia torsion, but Dr. Narotam seems to think he may not need surgery to correct that any longer!!
6-PT
Cathy has been diligently trying to get Rayden the correct walker. Although we had already ordered the big pacer walker, Cathy didn't think he needed that big thing! She brought three different walkers in the hall for Rayden to try. He started walking up and down the hallway like a champion. All the doctors stepped out to watch. Dr. Narotam actually put his face in his hands in amazement! He couldn't believe how much progress Rayden has made with the cables in only one month. Before the cables Rayden could barely stand up. His feet were turning in so badly that his legs would buckle at the knees. When he tried to take steps along the couch his feet went all over the place tripping him up. Dr. Narotam actually made the comment that Rayden should have had the twister cables a long time ago! I agree!! Cathy told us to go home and think about which walker we wanted. Michael made some alterations to the one we are borrowing from the CDSA and Rayden has been walking wonderfully in it. So we decided to get the smaller walker. Hopefully it will be here before Christmas.
-Maya
Maya has been our care coordinator since I was pregnant with Rayden. She has become like family. We love to see her every time we have appointments. Rayden actually wrapped his little arms around her neck and gave her the biggest, longest hug ever. The other doctors were jealous, haha!  

After our long day of appointments we stopped at Red Robbin to get a bite to eat before the long drive home. Rayden had not had a nap so he was exhausted! He actually fell asleep before we even ordered our drinks. I placed him in the booth beside of me and he slept during the entire meal. Precious baby. 

October 31, 2016 "Halloween"

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! 

        

October 14, 2016 "Twister Cables on the HULK!"

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! 

October 15, 2016 "Second Birthday Party"

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.

October 11, 2016 "A lot has happened in two months!"

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.

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.

July 13-19, 2016 "Trouble, trouble, trouble!!"

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!!!!!!!