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!