December 23, 2015 "First Birthday!!"

Happy 1st Birthday!!!

I can hardly believe our sweet, Baby Rayden is one year old! He has brought so much joy to our lives. He brightens each and every day with his constant smile and happy demeanor. He truly is a blessing sent straight from God above!

*Weight: 21.4 lbs (54th percentile)
   -only gaining .2 lbs this month!! 

*Length: 30 in. (57th Percentile) 

*Head Circumference: 46.5 cm. 

Rayden has six teeth now! He can eat just about anything we give him! I'm thrilled to say he has stopped grinding his teeth. That drove me crazy.



In the short video clip you can see that Rayden started waving bye bye. He began at the beginning of this month, now he even tries to verbally say it! (pardon all the drool!)
                                                                                                                                                            

Rayden loves looking at books. 

What a wonderful Birthday Surprise! Although Rayden cannot pull himself up or stand alone yet, he CAN stand up if I hold his feet straight for him. He uses his own muscles. I can feel him pushing on his feet while I hold them straight. He is getting stronger each and every day.

Rayden loves his Dawn-Dawn!!

Since Rayden's birthday is so close to Christmas we celebrated with family and friends in October (sneak-a-peak day). We did have a special birthday dinner with family today though and plan to have a birthday breakfast with family from Alabama after Christmas. (3 celebrations!)

December 10, 2015 "Spina Bifida Clinic Appointments"

Spina Bifida Clinic appointments are long and stressful. Rayden had 8 appointments today. We started by taking some blankets made by the youth at Lee's Chapel OFWB Church to the Ronald McDonald House. Rayden really enjoyed sitting on Ronald's lap.

Opthamology- Although Rayden's optic nerves are no longer swollen, Dr. Gertsch stated that he could still see the remnants, like 'water marks'. Rayden's eyes have improved but he still sees a little bit of crossing. His alignment is looking good and he is thinking the Sixth Nerve Palsy has improved dramatically. The doctor says that he can tell Rayden seems to prefer his right eye and the left eye just seems to go all over. He still says Rayden is farsighted which is sometimes associated with eye crossing. He doesn't want to rush into treatment because Rayden has improved drastically these past 4 mo. So the plan is to give him more time to recover. He is going to continue to watch Rayden closely. We will be returning in 4 months. If his eyes are still crossing then he may do some patching or glasses. If the crossing remains, then he may need to have surgery. 

Rayden says "No more docs!"

Renal Ultrasound and Urology- The ultrasound revealed that Rayden's kidneys and bladder look good. Dr. Ross says his incisions have healed nicely and although the left testicle is not down as far as she would like, and significantly smaller than the right, she is just going to watch it for a while. She was concerned that his blood pressure has been elevated for the past several visits. She is referring us to a nephrologist to check on his kidneys. (I suppose we are adding a new specialist to our long list of docs!)

Occupational Therapy- Holly was extremely tickled with how well Rayden is doing. She says Rayden should be swinging. Apparently there have been studies that show rocking and swinging help children's brain development. It improves their ability to pay attention by stimulating the vestibular system. It also helps with attention, learning, and focus. (I guess we need to start swinging!) She also said Rayden needs to work on isolated finger movements like pointing and poking his fingers into holes. We need to use toys that he can put his fingers in or even a kitchen colander. Although she likes the fact that Rayden will knock the tower down when I build it, he needs to work on stacking it himself.

Dr. Narotam

Physical Therapy and Orthopaedics- Apparently Rayden needs to be wearing his AFO's at least 6 hours a day. We haven't been doing this because they hinder his crawling. His AFO's are already so tight that they are ordering him a new pair.

A standing device

I've been so worried about Rayden not standing up. I asked if he needed a standing device. Kathy, PT, says she doesn't think he may be developmentally ready to stand because he is not even pulling up. She doesn't think Rayden would benefit from a stander because it will only limit his movement and just agitate him. She says crawling builds his upper body strength and trunk strength. Besides, he learns so much more by moving around independently. She says a stander will not work his muscles because he is just standing there passively. They believe the best way to build his leg muscles is just standing him up and holding his knees. They told me to let his muscles do the work when he stands. I just need to hold his knees in alignment and keep his feet straight. They also suggested putting things he wants, like his crunchies or toys, in a chair as motivation so he will WANT to stand to get them.

Dr. Narotam says the Wheaton brace controls how far he rotates his feet in at night so he doesn't think Rayden needs the Ponseti brace with the bar in between. He said that he may be able to stop wearing the braces at night if he starts walking and standing during the day more. He also mentioned that when we return in February he would ask Dr. Cuomo to consult again about possible surgery...   

Dr. Alexander- Rayden crawls all over the floor but not the typical four point crawl. He pulls himself along with his arms. He actually has carpet burn on his forearms so much that I make him wear long sleeves now to prevent it. I've been wondering why Rayden is not four point crawling yet. Dr. Alexander says he is probably combat crawling due to his hip strength being weak not just leg strength. Although he can kick his legs out he says his hips are weak. He also said he would rather Rayden explore his world by crawling rather than being in a stander from a physiological standpoint. Crawling is giving him strength. Braces will help support his ankles so he has enough strength to use his knees and get them straight. A stander would help with positioning and bone strength but not necessarily strengthen his legs. He still believes Rayden will be able to walk with bracing or possibly something else.

Rayden's length is 30 in. (2 1/2 feet). He weighs 22 lbs on their scale. Although this is still within the 50th percentile (average), Dr. Alexander wants him to be BELOW average. He says he wants him to stay on the thinner side because his muscle strength is below average. Of course this does not mean I need to put Rayden on a diet. He doesn't want him loosing weight, just gain it more slowly. His recommendation was to water down his milk (3 to 1). He actually wants him to hover around the 25th percentile for his age!!!

Neurosurgery- I was unaware that every person left our exam room asking for neuro to come look at Rayden's head shape. Apparently they all noticed it right away. When Melody told me this I was shocked. I guess I've just gotten used to it. Although Rayden's shunt setting did not change and his head circumference is 46.5 cm., she seems really concerned about his skull plates. After feeling his head she believes his suitors have fused/closed prematurely. She says his head shape is "classic scafacephaly." It is the most common form of craniosynostosis, where premature closure of the sagittal suture results in a narrow elongated skull. She is ordering a CT scan without contrast, with 3-D reconstruction imaging after the holidays. He will need to be sedated. He will see Dr. Elton (neurosurgeon) and Dr. Wood (plastic surgeon) directly following the CT Scan. If it closes his brain can't grow properly. Treatment is surgery; releasing (re-opening) of the fused suture and widening the skull by opening up the sutures on both sides of his head, followed by wearing a helmet to reshape the head. It's a tough surgery. Please pray that the CT Scan will show a perfectly normal head so he does not need another surgery!!!!!!! I can't bear to see him go through that. (CT Scan is already scheduled for Jan. 7)

November 23, 2015 "11 months!"

My sweet baby is getting older!! As I started collecting details about Rayden's milestones I could not believe how far he has come this month alone!

-Weighing in at only 21.2 lbs. That's only gaining one pound this month.

-Rayden now has four teeth! He is grinding them a lot though and it just makes me cringe!

-His ability to eat other things has grown by leaps and bounds this month. He will eat little pieces of anything I give him. Rayden is delayed in fine motor skills. Children with fine-motor skill delays have difficulty using their small muscles, so that tasks like grasping food with their fingers are tricky. We have been working on his ability to pick up little things with his fingers and thumb not his entire hand. We started with the Gerber Graduates Wagon Wheels because they were larger than Puffs. He likes Puffs and Wagon Wheels but his absolute favorite snack are Gerber Graduates lil' Crunchies. He can pick them up with his fingers now and it just tickles us to death!

-Rayden is also delayed in gross motor skills. When it comes to gross-motor delays, the trouble is with large muscles and mastering skills like walking, kicking, hopping, and climbing stairs. We have been working with Rayden on sitting up by himself. His therapist has been showing him how to push himself up from the floor with his arms. One day (Nov. 10) it just clicked and he went from belly-to-sit over and over and over like it was a new trick! Now he is sitting himself up from a crawl position very quickly.



-Although Rayden is getting up on all fours and rocking back and forth now, he will not four point crawl. He can go ALL OVER the floor but it's more of an 'army crawl'.

-His newest tricks are shaking his head 'no', and clasping his hands over his head and looking at us with puppy dog eyes.

-Rayden is so vocal. He tries so hard to communicate. He has been saying "momma" for a while now, although he doesn't associate it with me yet. This past week he started saying something that sounds like "dada".

-He absolutely loves to watch Mickey Mouse Clubhouse! When we turn it on his face pure lights up! He will watch the 'hot dog' song over and over.

-I KNOW Rayden understands us now. We've been playing peak-a-boo with the burp cloth and blanket for a long time but early this month Rayden did it on demand! I asked him if he wanted to play peak-a-boo and he grabbed the burp cloth and pulled it over his face and started giggling. After a second or so he pulled it down with a smile and big eyes! I could hardly play through the joyful tears. This simple little game just assured me that he IS LEARNING!

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-My mind often drifts back to when the doctors told me they saw 'minimal brain tissue' on Rayden's MRI scan before he was born. Through their multiple apologies they assured me that he would have 'major learning deficits' and may never be normal. This month is FILLED with proof that they were wrong and My God is showing his power through Rayden's life! He absolutely amazes everyone, including his doctors. I can't wait to see what God has in store for his life and I'm so thankful He chose me to be Rayden's mom. 

November 16, 2015 "First pair of AFO's"

Since Rayden does not have any feeling in his feet or ankles he will need support to be able to walk or bear weight on his feet. An AFO is a device that supports the ankle and foot area of the body and extends from below the knee down to and including the foot. This device is used to control instabilities in the lower limb by maintaining proper alignment and controlling motion. A plastic AFO is a custom fabricated, molded plastic device that encloses the back of the calf and bottom of the foot. It can be fabricated with or without ankle motion and can cost around $1,000 a pair. They normally last about 6 months. It can be worn inside a shoe, but in Rayden's case we are just wearing them AS SHOES. We chose a Superman themed AFO with red insoles and blue straps. 

Rayden still wears his Wheaton Braces at night to hopefully prevent clubbed foot from returning. He will wear his AFO's during the day to practice bearing weight, the beginning stages of walking!!!! The AFO substitutes for weak dorsiflexors during swing and, more importantly, for weak plantar flexors during stance. At first Rayden did not seem to like the AFO's. I believe it's because he was not used to wearing anything on his feet during the day. It didn't take long for him to get accustomed to them. 

October 31, 2015 "First Halloween"

SUPER-RAYDEN!!

Rayden was Superman for Halloween. (Thanks Mrs. Jennifer Williamson for the cape and Mrs. Denise Boggs for the toboggan.) Rayden was able to dress up twice this year. One weekend before Halloween we took him to a trunk or treat. On Halloween night we took him to just a few select houses (family and close friends). He enjoyed seeing everyone. 

Although he doesn't know what candy really is right now, he loved being able to take it out of his bucket all by himself. 

A neighborhood friend has had a puppet stage on her front porch every Halloween for as long as I can remember. Every year when Justin and Alex were growing up we took them to her house. The puppet, named Witchy-Poo, would talk with each child and give them a bag full of candy. This became a tradition every Halloween. This year Alex reminded me that Rayden HAD to go see Witchy-Poo! He loved her right away!

October 23, 2015 "10 months!!"

10 months old

Time sure is flying by!!! Rayden is 10 months old. It seems like he was just born yesterday. He has truly matured a lot this month.

20.4 lbs.
46.25 cm head circumference

*It's getting really hard to take these monthly pictures. Rayden wanted to play with the sticker. Then he layed back to yawn. Eventually he just rolled over to crawl away!
*He cut his third tooth at the beginning of this month. He now has two on the bottom and one on the top.
*He can hold his own bottle without the itsy grip, when he wants to that is!!


*Has become aware of Momma's presence. He cries horribly every time I leave the room.
* I love the way he puts his thumb in the end of his paci and then sucks it. The problem here is his thumb is getting too big so it gets stuck sometimes. He mainly uses his paci to go to sleep. Other than that he just uses it as a teether to chew on.
*He reaches for you when he wants to be picked up now. And can sure throw a fit when you don't!!

*We've experienced new foods this month. He can eat a little table food like canned carrots, green beans, scrambled eggs, and mashed potatoes. He has a pacifier looking net thing that we can put food (fruit) in so he can suck the juice out. Michael decided to put a piece of steak in it. I can't even put into words how much Rayden loved it!!! When we took it away you would've thought we killed him. He screamed like crazy. We've also introduced the sippy cup with juice. Not sure how he feels about that one.*He sat in a high chair in the restaurant for the first time this month. I know that may sound trivial at this age, but we normally just keep him in his car seat. The restaurant high chairs are unlike his at home. They are just wooden with no cushion at all.  This promotes an issue for Rayden so this little milestone needs to be celebrated too.
*He's started making this utterly adorable face where he squeezes his eyes shut while he has this huge smile on his face.

*Rayden loves to take Daddy's hat off. He loves to chew play with it and doesn't mind wearing it either.
*His therapist has been working on holding something in each hand independently. At first this was a difficult concept for Rayden to grasp. If he had something in his hand he would drop it to pick up the other item. She would offer something else to him and he just kept dropping what was in his hand over and over. It was actually kind of funny, but he can do it now-if he wants both items that is.
*He actually said his first recognizable word this month, "mama" or something that sounds like it. He actually says it quite a bit now. I'm not going to say he knows what he's saying, but it sure sounds wonderfully sweet coming out of his mouth. Listen carefully at the end of this short video clip and you should hear it.

October 17, 2015 "Sneak-A-Peek Celebration"

We decided to have a small gathering to celebrate Rayden's 'almost birthday'. (He was kinda born twice, ya know!) Most people in the 'Spina Bifida World' call the anniversary of fetal surgery 'Butt Day' because it is the day the baby's 'butt' is born. I wanted to call this day something different. After asking around, we decided to call it "Sneak-A-Peek" Day because we just took a peek at Rayden and put him back in for 10 more weeks. I thought the cake was absolutely perfect. (Thanks Sweet Dreams Bakery) Elizabeth and Justin made the most amazing #1 cookies too. Some had his name on them, others had the Spina Bifida ribbon.



We really enjoyed the day. Rayden seemed to know it was all about him because he was super excited, didn't take a nap all day, and wasn't even ill. He laughed and played with everyone. Of course we had to follow tradition and allow him to eat his own little cake. I certainly didn't want to but I suppose he enjoyed it. Below is a short video clip of Rayden savoring his cake.

So windy I had to wear a hat. 

Emma and Ethan help Baby Rayden open presents. 

October 14, 2015 "First Annual 'Rayden's Day'"

Oct. 14, the anniversary of Rayden's fetal surgery, his 'sorta' 1st birthday. We asked everyone to wear their Rayden's Reason shirt or yellow to support Rayden and spread Spina Bifida awareness. The response was amazing. I know I didn't get a picture of everyone but here are a few. We are so thankful to have each of you in our lives. 

September 23, 2015 "9 months old!"

Rayden is 9 months old! 

*Weight: 19.6 lbs. (between 25 and 50 percentile)         *Length: 28.5 in. (in 50th percentile)                                 *Head Circumference: 46 cm. (between 50 and 75 percentile)

His therapist calls him an "emergent" sitter. He loves to make noise! Mrs. Emily, PT, brought him this drum. He loves to bang on it, but it also helps him hold his balance better. 

Here is a short video clip of Rayden sitting up on the bed. He had already been sitting there for over 5 minutes before we even thought to grab the camera!!

Rayden has become very vocal. Here is a video clip of him "copying" his Daddy. 

He's noticing everything we eat and seems to want some. Michael gives him tastes of just about everything too. This Crazy Bread helped him cut his first two teeth this month. 

He got new Wheaton Braces this month. He still only wears them at night. He tries to help me put them on every evening. Of course, he's more of a hinderance but that's alright. At least he doesn't cry when we put them on. 

Rayden no longer needs the Itsy Grip to hold his bottle! He can do it himself!! What a big boy! 

We've always had so many challenges with bath time. For the longest time we couldn't bathe him because of the casts. Then it was his shunt surgeries, and most recently, his hernia surgery. Of course, Rayden has gotten too big for his baby bathtub (that we hardly ever used). Since he can't sit up without support, I placed his Summer Seat in the tub and strapped him in. He seems to like it. 

Rayden has become MOBILE!! Here is a short video clip of Rayden getting around on the floor. 

September 14, 2015 "Surgery #8"

Surgery #8-Inguinal orchiopexy, inguinal hernia repair and take down of penile adhesion.


Got up at 3am to begin the day. Rayden had his 8th surgery in 8 months! He was such a trooper. Even though he hadn't eaten since 8:30 last night, he still smiled at everyone he met this morning. Anesthesia took him away from us at 7:30am. Dr. Sherry Ross came to the waiting room around 10:00. She took Michael and I to a private room to discuss how the surgery went. There were three parts to this one surgery:

1-She started by saying it was much more difficult than she had anticipated. We were unaware that he had developed a super large hernia. Dr. Ross said it was the largest hernia repair she had ever seen! It may be due to him having a shunt she said. She placed both of her thumbs together (one on top of the other) as a visual for us to see how large it was. She said it gave her a really hard time making her use every trick in her book and every stitch she knew to correct it. Even after all of that, she's only 90% sure it will hold. It may have to be reevaluated laparoscopically with a mesh at a later date if it doesn't hold. An inguinal hernia occurs when a portion of the intestines protrudes through a weak point in the abdominal muscles. It isn't necessarily dangerous by itself. It doesn't get better or go away on its own, however, and it can lead to life-threatening complications.

2-Then she discussed the actual testicle. Although she couldn't stretch the blood vessels and cords far enough down, she believes it is still viable and far enough for now. She's not sure if the testicle is damaged or not because it is much smaller than the other one. She's not going to go back in to correct it unless it's absolutely necessary. Of course, he will be monitored closely. I pray it heals up and grows perfectly. There are two main complications when a testicle is not located in the proper place; testicular cancer and fertility problems. We are trying to minimize Rayden's struggles. He has enough to fight!

3-Lastly she fixed Rayden's circumcision. He had a skin bridge and some adhesions.

The recovery room nurse couldn't seem to calm Rayden down so she called for me. She had already given him tylenol and fentanyl. Rayden was in so much pain. He was swollen and crying so pitiful with his lip quivering. The nurse wanted me to change his diaper right away. I almost passed out when I saw the two purple incisions and all the huge swelling! (I would post pics, but it's private!) Although Dr. Ross told me to expect it, I still wasn't prepared. I tried to give him a bottle but he wouldn't swallow because his throat always hurts after surgery due to the breathing tube. He fell asleep in my arms. I sat and rocked him for about half an hour. Although only one parent is allowed in the recovery room at a time, the nurse realized his Daddy hadn't seen him yet so she allowed Michael to come in and kiss Rayden for a minute. We went to another room where Rayden drank his bottle and woke up more. Around 12:00 we were able to go home.

Rayden was in so much pain. He wouldn't let me put him down. He would just lie in my arms and yell out in pain every ten seconds or so. I barely touched his belly to fasten the diaper and he screamed. When I lifted his leg just a tiny bit he would wail in pain! He cried enormous crocodile tears most of the evening! He didn't eat any baby food all day but he drank most of his bottles. Michael and I gave him some Motrin and Oxycodone and he drifted off to sleep about 9pm. He was up and down all night.

He normally bounces back pretty quickly so I don't expect this to last.

September 3, 2015 "Teeth"

At 8 mo. old, Rayden loves to chew on everything and has been slobbering for quite some time. Michael gave him some Crazy Bread from Little Caesars to suck on Tuesday night. When he actually got a piece off I noticed he had one little tooth on the bottom that had erupted through the gum. His First Tooth!!! I noticed there was a hole right beside it so another tooth was on the way. Only two days later, Thursday, Michael gave him another piece of Crazy Bread. VOILA!, out popped tooth number 2!

September 10, 2015 "D-day (Diagnosis Day)!"

D-day! 

Most people remember "D-day" as when the troops stormed the beaches of Normandy in World War II. But parents of children with Spina Bifida remember it as a different battle day, the day our children were diagnosed. 

I will never forget that day...September 10, 2014. We went in for a routine, 18 week anatomy ultrasound. I can still hear the doctor saying "I'm sorry. We see signs of Spina Bifida." I didn't even know what it was!!! The doctor used words like: neural tube defect, spinal nerves outside of body, may never walk, clubbed feet, paralysis, hydrocephalus, chiari malformation, brain damage, no bladder or bowel control... Followed by the awful choices of termination, fetal surgery, or surgery immediately after birth. Michael and I were in such shock and disbelief.

After reading the pamphlets given to me from the doctor and some research on-line I was in such fear for our unborn son. How much pain and suffering he would have to endure and how many challenges Spina Bifida would bring to our family. I could not believe God had given us this burden to carry. I remember asking God "WHY???" Begging Him to take these choices out of our hands. We honestly did not know what to do. Why would a loving God allow this to happen to an innocent child?

Although our house was filled with family and friends, I felt angry and alone. My heart was in a thousand pieces and I was on the edge of a complete break down. I thought I had my life all mapped out and then this 'MOUNTAIN' falls in the middle of the road. I had just accepted the fact that God had given me this baby for a reason and then I find out he was in trouble, facing unbelievable challenges. I just didn't understand, and to tell you the truth, I still don't. Just remembering that day is making my heart race, body shake, and tears flow. (This has got to be a form of PTSD)

The words of this song by Hilary Weeks are sooo perfect. "Broken-hearted I started climbing and at the top I found every fear, every doubt, all the pain I went through was the price that I paid to see this view. Now that I'm here I would never trade the grace that I feel and the faith that I find through the bittersweet tears and the sleepless nights. I used to pray He'd take it all away but instead it became a beautiful heartbreak."


We've definitely traveled a rocky path this past year. Rayden has had 7 surgeries in 6 months and there are more in his future. But as time has passed I've begun to understand a little more of God's intent. Just look at this precious angel...despite all the challenges and imperfections he was born with...he's absolutely perfect!

Rayden has the most gentle soul. When he smiles at you your heart will melt into a thousand pieces. His sweet laugh is infectious making everyone that hears him laugh along with him. He spreads pure joy to everyone he comes in contact with. I could not be more proud to be his mother. Thank you God for placing this precious angel in my life and entrusting me with his care. 

August 23, 2015 "8 months old!"

Rayden is 8 months old!!!

Weight: 19.2 lbs.

*Rayden can sit up for about 45 seconds then he falls forward or to the side. If he falls forward he catches himself with his hands and will push back up. The problem here is he doesn't know when to stop, so he pushes himself all the way back! If no one is behind him he will hit his head on the floor. I'm sure it won't be long until he figures it all out. Here is a short video clip. It was very difficult to catch.





*He can roll over from back to belly and belly to back although he doesn't seem to want to anymore.

*He loves to hear anyone sneeze! It is the funniest thing to him. He laughs at Daddy doing ANYTHING!!!!

*Rayden has been eating baby food for a while now, but Daddy wants to let him try all kinds of new things. Of course, he is very careful not to let him get anything in his mouth, he just lets him suck on things. He gave him a dill pickle to suck on in a restaurant and Rayden LOVED it! He gave him steak today! This boy CRIED when he took it away! I see trouble in our future!!



*He found his toes and loves to put them in his mouth! It looks painful but it reminds me of how he was positioned in the womb. I thought he was going to be born folded in half! Here is a short video clip:

*I love the way he goes to sleep at night all by himself. We just give him kisses, and lay him in his crib. We found the most awesome mobile at Buy Buy Baby. It resembles a ceiling fan (which Rayden adores), plays music, and shines stars on the ceiling. After we lay him down he just watches it until he drifts off to sleep. Most precious moment!! Here is a short video clip:

*He can hold his own bottle now thanks to the itsy grip that Michelle Willis, Occupational Therapist, brought him.

August 13, 2015 "8 appointments in one day!"

Today began bright and early. We got up at 4am! Rayden's first appointment was at 7:45!

MRI-We are getting all too familiar with the MRI process. The technicians actually recognize us. That's pretty bad! Rayden doesn't like to be strapped down but tolerates it pretty good until the noise starts. Then he screams the entire time. The good part is that it doesn't last too long. It's a Rapid Sequence MRI, so it lasts about 10 min. The results are getting better each time-"A little LESS fluid and a little MORE brain tissue."

Renal Ultrasound- Rayden's kidney's and bladder look good. Still no back flow, meaning there is still NO NEED to catheterize him! This is fabulous news. We are praying that he never has to be cathed.

Opthamology- We've been noticing that Rayden's left eye is still looking inward toward his nose (crossing). Dr. Gertsch says that the swelling of his optic nerve is all gone but the pressure from his last shunt infection may have caused him to have Sixth nerve palsy (weakness of the nerve that innervates the lateral rectus muscle). This muscle pulls the eye away from the nose but when it is weak, the eye crosses inward toward the nose. This of course causes Rayden to have delayed visual maturation and blurred vision. Which may explain some of his hand-eye coordination issues. It is possible for this to correct itself in about 6 months so he suggests we just watch and give it time for now. If it does not improve he may suggest surgery to maximize eye alignment.

Spina Bifida Clinic
Dr. Alexander- Rayden is growing so fast. He is rolling over now and trying to sit up. He is extremely vocal! Although most children his age have already mastered these skills, Dr. Alexander says not to compare Rayden to them. He will be meeting milestones on 'Rayden time.' As long as he is still improving and growing Dr. Alexander says he is not concerned. He did another sensation test on Rayden. He broke a wooden toothpick-looking stick and poked his legs in various places. Dr. Alexander reports that Rayden acts like he is more of an L3 rather than L4. L3 is higher up the spine meaning he does not have any feeling in his butt, backs of legs, ankles or feet. He can still move his legs and WILL one day be able to walk though. We knew this was a possibility before Rayden was born so this comes as no surprise. We will just have to teach Rayden how to walk differently than other children. We will also have to teach him to examin his legs daily. He has poor circulation down his legs into his feet which makes his feet and ankles turn purple often. We will also have to teach him to massage his legs to promote circulation. Rayden doesn't like loud, sudden sounds. Dr. Alexander says this is common in children that suffer from hydrocephalus. He says it will improve with time, nothing really to be concerned about.

Physical Therapy- Cathy Howes made some good suggestions for helping Rayden sit up. He can't really sit in those chairs where his legs hang because of his circulation issues. Placing pillows on both sides of his body so he can prop sit easier rather than trying to prop on the floor is one idea that I think will make Rayden happy. He hates propping on the floor. The boppy pillow doesn't seem to work either because he just throws himself back because he knows it's back there. He needs a lot of tummy time to strengthen his core, although he doesn't really like it.

Urology- Rayden's left testicle remains undescended (Cryptorchidism). Cryptorchidism is the most common genital abnormality in boys, affecting approximately 30% of baby boys born prematurely and about 4% born at term. If left untreated it can cause infertility or other medical problems. Therefore, Dr. Ross is going to schedule surgery in September to correct this. (Surgery #8)

Orthopaedics- Rayden's Wheaton Braces are getting too small. Dr. Narotam is ordering him some new ones. They say Rayden's feet remain too small for custom fit AFO's. {I can't wait for him to get them.} Of course, Dr. Narotam reminded us that Rayden may need surgery around 1 year old to correct the tightening of his achilles tendon. He also wanted me to be aware and not get upset if Rayden needs to go back in casts from time to time throughout his life.

Neurology- Although Dr. Alexander measured 46cm head circumference, Gretchin only got 45.5cm so all is well. MRI adjusts the setting of the shunt needing it to be reset after each test. Since Rayden's MRI was at 7:45am and we didn't see neuro until 5pm it was off for hours! This explains why he was getting angry and started throwing up. Gretchin tested and reset his shunt back to 2.0.

Even though our day was extremely busy we found time to visit and encourage a fellow fetal surgery mom in the hospital. I remember when Becca did this for me when I was in the hospital and it meant so much. Some of the nurses were there and were able to meet Rayden. Michael and I spent an entire month (December) on third floor with these women. They took such great care of us. We even found time to have a nice lunch and take a tour of Bye Bye Baby. That place is amazing!!

August 11, 2015 "Redefining Spina Bifida"

These are the 3 articles in Redefining Spina Bifida that feature Rayden. Thank you Tammy Bunn for taking such wonderful pictures. Thanks to Jennifer Williamson for making Rayden such an awesome cape and mask. Thanks to Kathryn Honeycutt for buying Rayden the most perfect onsie to match the cape.

Redefining Spina Bifida No family plans to have a child with spina bifida – the diagnosis and journey is one that no one expects or wishes for. As devastating as the news seems when families first learn of the diagnosis – once a child is born with spina bifida our children are surrounded by so much love. Families often recognize that their child is a gift that they were blessed with for very special reasons. They continue to remind us just how amazingly special this journey can be. Our little friend Rayden was born late last year and is now 8 months old. After undergoing fetal surgery he arrived at 33 weeks due to his hydrocephalus progressing significantly in utero. He's underwent a few shunt surgeries and challenges in his first year but he continues to smile and bring his family so much joy. photography by Tammy Bunn Treasured Moments Photography #spinabifida #redefiningspinabifida #hydrocephalus

Redefining Spina Bifida

Our friend Rayden was born with spina bifida and hydrocephalus about 8 months ago. Can you sense he's just as curious as other babies his age? Never forget that babies born with spina bifida are babies first.

All to often parents may worry about the challenges of spina bifida when their babies are young – what advice do you have for other parents raising a baby with spina bifida?

photography by Tammy Bunn
#spinabifida #redefiningspinabifida

Redefining Spina Bifida

Many of our families consider our children born with spina bifida to be our "heroes" and it's not uncommon to consider them a superhero. They surely do show their strength from a very young age and overcome so many challenges beginning as a baby that many grown adults don't face in their entire lifetime.

If you find yourself admiring your own little superhero born with spina bifida let us know – we'd love to see a picture and hear about how they've overcome the challenges that may occur with spina bifida.

Rayden's family has shared his story on their blog since before he was born – we think you'll be touched to see it: http://raydensreason.blogspot.com/
Do you have a blog or facebook page to share your experiences with spina bifida in your or your child's life? If so post a link – we'd love to see them.

photography by Tammy Bunn Treasured Moments Photography
‪#‎spinabifida‬ ‪#‎redefiningspinabifdia‬