April 19, 2018 "Optic Nerve MRI #2"

I AM BEYOND AMAZED with this precious boy!! I have been telling him all week about how they were going to lay him on a table and take pictures of his head in the tunnel. He was a little scared when I took him into the MRI room. He was shaking all over and about to cry. He told the technician, Brian, to take off his gloves. I told Brian how Rayden thinks you are going to hurt him if you are wearing gloves. He immediately threw those gloves on the floor. Rayden started laughing. He allowed Rayden to put in his own ear plugs and the two pillows beside his ears. He even played with the helmet a little before putting it on Rayden. I just knew when they moved the bed into the tunnel he was going to cry, but I was wrong. He just laid there and said "that's a loud camera." I believe my baby is growing up. He is officially the bravest three year old I've ever met!

Dr. Elton was floored that Rayden remembered he wore glasses last week but not this week! He said he is very observant, repeating it several times. He just couldn't get over it. He said there cannot be anything wrong with this child's brain if he has no memory loss!

He just doesn't see any evidence of brain pressure. His suspicion is that Rayden does not have brain pressure. He can't explain the optic nerves swelling. He doesn't want to do anything to put his shunt at risk if it isn't necessary. He just feels inclined to watch him. He says the plan is to take new optic nerve photos on May 3...
     1-If they are better, then we are good.
     2-If they are worse, he will operate on the shunt.
     3-If they are the same, then we watch his eyes on a closer basis.
     4-If his vision starts changing then he will operate.
He says he may be inclined to say this is what Rayden's optic nerves are going to look like. His brain, skull, ventricles, feet, hips, ankles, spine, kidneys, EVERYTHING, just doesn't look like everyone else's. So why are we surprised when his optic nerves look different??? Hmm, maybe he's right. Dr. Elton has told me on many occasions that Rayden doesn't follow the text books, he writes his own book. As long as Rayden is happy, and healthy, I am fine. This just reminds me that a Spina Bifida patient is never OUT of the woods. We just learn to survive IN the woods.

April 12, 2018 "SB Clinic and Neuro exam"

Most of Rayden's appointments went great today. There were really only two concerns (below). Dr. Alexander says Rayden seems to be right on target with his developmental milestones. He weighs 33lb. without his cables (60th percentile) and he is 3'3" high (79th percentile). His BMI is in the 25th percentile, which is exactly where Dr. Alexander wants him to be. 

Neurosurgeon

Dr. Elton was troubled by the optic nerve swelling. He says Rayden just doesn’t look/act like a child with shunt malfunction. He says the only way you can get brain pressure if you're not draining fluid but he doesn't see any evidence of this on his MRI. He's thinking there may be debri in his shunt but maybe not enough that is causing it to totally shut down. He could tap the shunt but he doesn't want to expose him to any unnecessary infection. He decided to adjust the shunt valve anyway to drain more CSF off his brain hoping to alleviate any pressure. He scheduled a second MRI for next week. He says the previous one from January showed no tumor or brain bleed. We will have more nerve photos taken May 3. If they are still swollen then he says he will be obligated to operate on the shunt. He will take it apart in the OR to see if it is clogging or whatever. If the optic nerves remain this chronically swollen long it may cause permanent vision problems. Rayden already has residual scarring on his optic nerves but that is probably from his previous hydrocephalus issues. He doesn't need any more damage to his optic nerves. 

Renal Ultrasound/Urologist

We have realized that Rayden has associated gloves with pain. He asked the technician to take off her gloves to do the ultrasound. When she did, amazingly Rayden just laid there and allowed her to take fabulous pictures of his kidneys and bladder. Dr. Ross says his bladder and blood work looks good. She mentioned his kidneys have not grown much since his last ultrasound. She is alarmed but not worried yet.

After six, long appointments today, Rayden is worn out! He is such a trooper to get pulled every direction and he takes it so well.

April 5, 2018 "Optic nerve ultrasound"

I really never thought Rayden would cooperate during the eye ultrasound. What three year old sits still while someone rubs jelly over their eyelids with a probe? Boy, was I wrong! He was amazing.

A few hours after we left, Dr. Grace contacted me with the results. The ultrasound revealed both optic nerves remain swollen but there is no sign of drusen. I was really hoping drusen would be the culprit because the alternative can be really scary. Dr. Grace seemed to be as unsettled as me because she stated she was going to page Dr. Elton, Neurosurgeon, tomorrow. She sent him the optic nerve photos from last week but he was out of town. The fact that she is paging him has me alarmed. She also asked the radiologist to take a second look at the MRI that Rayden had in January. He originally said his ventricular system was mildly increased from last year but nothing out of the ordinary. His re-read was the same. But my mind wonders if he was only looking for intracranial pressure or ventricle sizes NOT tumors or abscesses. Something HAS to be causing his optic nerves to swell.

(Some causes of increased pressure from CSF and papilledema are brain tumors and brain infections, such as brain abscess, meningitis or encephalitis. One condition can cause increased pressure in the CSF without associated swelling of the brain or ventricles. This condition, called pseudotumor cerebri or benign intracranial hypertension, is caused when the body makes too much spinal fluid. This is a common cause of papilledema when the brain scan is normal.) Pseudotumor cerebri really doesn't make sense to me because Rayden already has a shunt that is suppose to drain excess CSF. I'm certainly NOT a brain surgeon but I just have a bad feeling about this.
The life of a person with Spina Bifida...It can be ANYTHING at ANYTIME all your life!!

The next day Dr. Elton's nurse, Melody, called to say he wanted to see Rayden next week. She didn't say what he wanted to do or what he was thinking, just that he wanted to 'see' him.

April 1, 2018 "Easter"

Easter 2018 Celebrations

  

March 29, 2018 "Optic nerve edema #3"

Rayden's vision remains the same and his optic nerves are still swollen! Dr. Grace is sending the new photos to Dr. Elton, Neurosurgeon, because she is not 100% sure his shunt is not malfunctioning. She stated that since his optic nerves have been swollen since January (that we KNOW of) she is calling it "chronic papilladema". The only other thing she thinks it could be is drusen.  (Optic nerve drusen are abnormal globular collections of protein and calcium salts which accumulate in the optic nerve.  Drusen usually become visible after the first decade of life, but can be seen before age ten in some children.) We will be going back to UNC next week to have an ultrasound of his eyes to rule out drusen. She thinks the likelihood of it being drusen is very low but how many times has Rayden NOT followed the text books? She also thinks a repeat MRI may be a good idea.

Left: March 29       Right: February 22

Causes of papilledema in the pediatric population may include, but are not limited to, Guillain-Barré syndrome, spina bifida, hydrocephalus, intracranial mass, trauma/subdural hemorrhage, meningitis, subdural venous thrombosis, arteriovenous malformation and idiopathic increase in intracranial pressure.

March 19, 2018 "First Day of Preschool"

We finally got Rayden into the EC Preschool program. He will be attending CES four days a week where he can receive physical therapy and occupational therapy during the school day. This is one excited little fellow! He finally gets to use his backpack and lunchbox he got for Christmas. We even found him some light up shoes that he absolutely LOVES! (side note: We have always had to special order his shoes to fit over his AFO's. These are a real find!!)

Rayden loves walking up and down the halls with his walker like a big boy! He spreads pure sunshine to everyone he meets. It amazes me how much empathy, compassion, and acceptance he is TEACHING the other children just by being there. 

We are so thankful to his awesome teachers Mrs. Rhonnie Smith and Mrs. Melanie Bastin. 

March 9, 2018 "Hip Surgery Consult #3"

Well, amazingly Rayden's hips have not changed in the last six months! Dr. Cuomo said they might actually be a little bit better. Although his left hip remains 75% OUT of socket and the right remains 25% OUT of socket, she decided to wait on the hip surgery a little while longer.

Rayden's right foot is beginning to turn in really badly. It is fighting the bracing so bad that when we remove his cables at night his ankle is so fire red. Dr. Cuomo suggested doing a tendon transfer surgery to turn the foot more outward although it would only be a partial correction. To get a FULL correction she would need to move the ankle bone itself. After viewing his foot x-ray's she decided that his bones just aren't big enough right now. Therefore we made the decision to wait another year giving him time to grow. Then maybe combine the tendon transfer, ankle de-rotation and hip surgery all in one.

February 22-23, 2018 "Optic nerve edema #2"

Man, has this boy come a long way!! I remember having to sit in the examining chair with Rayden in my lap, hold his arms and head down for the eye doc to look in his eyes. He would scream like someone was killing him and I would end up soak and wet with sweat! NOW...he sits in the chair all by himself, keeps his hands in his lap and identifies the pictures at the end of the room. It's amazing!

Dr. Grace has been watching Rayden's eyes do crazy things for three years now. She has been mentioning possible surgery but has been very conservative, allowing his eyes to mature. Today she stated that the inferior oplique over-action has gotten really bad. It is time to do the eye surgery. During this surgery her main objective would be to correct the inferior oplique muscle. Although it is under the eye, this muscle is responsible for making the eye go upward. While she is in there she is going to work on the other muscles on the side to prevent his eye from going outward. Unfortunately she believes it may take more than one surgery to correct the issues.

Rayden's vision is 20/50 in the right and 20/80 in the left. This surgery is to correct the misalignment of his eyes. It will not correct his vision, although it is all kind-of related. Children get bad vision because their eyes are misaligned. Therefore, if we correct the misalignment, we will improve how much visual stimulation he's getting. He is not getting enough stimulation when his eye is out or upward. This is not a cosmetic surgery either. His vision is still developing and his brain is trying to learn to use his eyes together. Learning to use the eyes together is one of the most sophisticated things the brain does. Rayden had so many crazy things happening in his brain when he was first born that she's not sure he will ever use his eyes together perfectly because that develops when your are tiny. This all comes from the eye muscle control center in the brain, of which she can't operate on because doctors don't even know where that is!! She says there is nothing wrong with his eye muscles, but by moving these muscles around it tricks the brain to think they are in the correct position. But that is also why it can come back. The surgery will only take about 45 min to an hour under anesthesia. His eyes will be very, very red for a couple weeks afterwards. To minimize anesthesia she would like to do it when Dr. Cuomo operates on his hip and right foot. Ultimately performing three surgeries at once.

At the last appointment, Dr. Grace noticed that Rayden's optic nerves were swollen. She was concerned that his shunt may be malfunctioning. We ended up getting an MRI but it didn't show anything. Today we took nerve photos. In the top photo there is a little, sharp, black line around the circle in the center of the eye. This is a normal optic nerve. In the bottom picture that little, sharp, black line is NOT there. The optic nerve actually looks bulging. This shows optic nerve swelling. These nerve photos allow us to see what Dr. Grace sees when she looks into his eyes. She is going to send these photos to Dr. Elton, Neurosurgeon, because she believes his shunt may be malfunctioning.

The very next morning I received a phone call at 7:30 am from Melody, Dr. Elton's nurse. They had received the nerve photos and Dr. Grace's notes. We had to go back to UNC because they decided to change his VP shunt valve setting from 2.0 to 1.5. This will allow for more CSF to flow OUT of the brain hopefully alleviating any pressure on the optic nerves. The scary part is she said it couldn't wait, it had to be changed now! His shunt has been set on 2.0 since 2015. It is frightening to me because the CSF could be backing up because of a blockage in the shunt valve or tubing. Opening it up could flush the blockage out OR it could allow for more CSF to get stuck in the tubing making it bulge out. There are soooo many different things that could happen. My mind goes to a million different places. The very, very last thing I want is for this shunt to be malfunctioning and they have to do another brain surgery on my baby!!!!! I pray that changing the valve setting is the right decision and that nothing further is needed. We will take more photos in four weeks to compare his optic nerves.

January 19, 2018 "Optic nerve edema #1"

January 12, 2018 Opthamologist: Rayden was absolutely amazing at this eye appointment! He sat in the examining chair all by himself, named all the pictures he saw, and allowed the doctor to look deep into his eyes. He could see very well using both eyes but when they covered his good eye he couldn't see the small pictures. This had me concerned but Dr. Grace said it wasn't bad enough to warrant glasses.

She said his inferior oblique muscle is overacting which is why his eye gets buried and weird when he looks to the side. He is not using his eyes together well. She wants to look at surgery later on this year for the eye misalignment. She wants us to patch his eye four hours a day now to try and correct the unequal vision. She wants his left eye vision to come down more and meet the right eye. She stated that eye muscle surgery is more successful if the vision is equal in both eyes. Surgery would make the eye stay in line better so that it could get better visual input.
As if that wasn't bad enough...she noticed that his nerves looked swollen. She didn't think they were excessively swollen but she didn't want us to leave her office without talking to the Neurosurgeon. She looked three different times and was positive that his optic nerves were swollen, not horrible, but definitely there. Within two minutes of her paging Melody, she called right back. Seeing as how there were no other symptoms of shunt failure, Melody, scheduled an MRI and shunt series for next week.

January 19, 2018 Neurosurgery: Rayden was so brave getting his X-ray shunt series and MRI. The MRI technician crawled in the tunnel with him so he wouldn't be so scared. Although he did cry just a little bit he defiantly showed that he is growing up.

Dr. Elton didn't see any area of pressure on the back of his eyes. There was no increased inter-cranial pressure or tube blockage. He said the scans looked exactly the same as last year. Therefore he didn't want to change the shunt valve setting or do anything drastic. His recommendation is to be on 'shunt watch', meaning he MAY start to show signs of shunt malfunction soon. (throwing up, headache, lethargic, etc.) If this happens then Dr. Elton may change the valve setting. He wants us to follow up with Dr. Grace in the next three weeks because he fears the problem may lie with his eyes not his shunt. Now this does not give me any real answers but I am relieved that his shunt seems to be functioning properly.

December 31, 2017 "Miracle Walking Videos"

Rayden sure has come a long way with his forearm crutches (Henry's) in just a three months. 

9-3-17 Walking and TALKING outside with Henry's 

9-10-17 First time walking with Henry's at church 

Turning 3 years old gave Rayden a whole new sense of bravery. Right after his birthday he started taking independent steps WITHOUT his walker or Henry's. He has taken as many as 10 steps before he looses his balance and falls. I love having a front row seat to watch God's miraculous power. 

12-31-17 Five Independent steps

December 23, 2017 "Rayden turns 3"

I cannot, cannot, cannot believe my baby is 3 years old!!!!! Where has the time gone? 

We had Rayden's tractor themed birthday party Oct. 7. Rayden rode down the street to his party on a green John Deere tractor, thanks to our friends Gary and Rhonda Moore!

 

 

December 9, 2017 "Shriner's Christmas Party"

Being invited to the Dunn Shriner's Annual Christmas Party was surely a treat. They had games, prizes, food, treats, and of course, CLOWNS and SANTA. I didn't know how Rayden would react to the clowns. He surprised us all. He absolutely loved them and I believe the feeling was mutual. These men were so sweet, loving and attentive to these childrens' special needs. It really blessed us to see Rayden so happy. 

Rayden was the first to go sit with Santa. He told him all about the book bag he wants for Christmas and Santa gave him three gifts. It was truly a memorable event for our family. 

November 9, 2017 "SB Clinic"

Weight--32.3 lbs. (62nd percentile)
Height--3'3" (92nd percentile) Super tall for his age!
Head circumference--51.5 cm (89th percentile)
BMI--14.75 (11th percentile) Yeah! Dr. Alexander finally said he was not overweight for a SB child.

1-Renal Ultrasound-Will he ever get used to this? Rayden has to have an ultrasound of his kidneys and bladder every six months. He gets really scared when we laid him on the examining table. We have to distract him and give him treats while the examiner takes the images. He calms down after a minute or so, but that first minute can be really rough!! Thankfully his kidneys and bladder continue to look great.
2-Urologist-Dr. Ross discussed how Rayden's Peristeen system is working. She is amazed at how well Rayden has adapted to it. She is pleased with his kidneys and bladder function and is ordering some lab work for next time.
3-Dr. Alexander discussed Rayden going to preschool and recommended seeing a dentist now that he is turning 3 years old. He says that Rayden's remarkable vocabulary just proofs his high level of intelligence.
4-Orthopaedic-Dr. Naratam discussed possible upcoming surgery on his feet and hips this summer. They want him to be on his feet (not in a wheelchair) and functional for a long time, therefore he also believes the surgery is necessary. He says that Rayden's spine looks great but the left side of his back is a little higher than the right, something we will watch. He was amazed at how well Rayden can maneuver his walker with his cables and AFO's. He was blown away when Rayden walked with his Henry's (forearm crutches). He said most children don't master all four extremities at the same time until four years old.
5-Physical Therapy-Mrs. Cathy raised Rayden's walker up because he has gotten so tall. She called Rayden a daredevil because he showed them how he can 'sit' on his walker and use it to ride down a hill. She was also shocked that he could climb up and down the stairs holding onto a rail. She could not believe how well he can hold his balance since his hips are coming out of joint making his legs uneven. She said he was awful young to be doing all the things that he can do, he is the complete opposite of what they were expecting him to be.
6-Occupational Therapy-She gave me strategies to help teach Rayden how to take his own shirt off. She gave us some coordination techniques to work on as well.
7-Neurosurgeon-No report because Mrs. Melody was out sick.

Overall Rayden's appointments today were awesome!! This was the first time we actually got good reports from all doctors.

September 8, 2017 "Hip Surgery Consult #2"

Dr. Cuomo compared Rayden's new x-rays to previous ones. She stated his hip dysplasia is just a tiny bit worse to the naked eye. The radiologists' report stated his right femoral head remains 25% uncovered but the left femoral head is now approximately 75% uncovered. (It was only 50% in May) The right femoral head points toward the triradiate cartilage but the left does not.

I realize these are not the best photos, but they are all I have. 

She stated that over the years they have found that even though they repaired the hips, in most patients with nerve damage the hips continued to come out of socket again. They realized that the hips were unstable because of a muscle imbalance which is unfixable because they can't fix the nerves, therefore they stopped doing the hip surgeries.
She observed Rayden's ability to walk "without" his cables and AFO's. His hips are nice and stable. She doesn't think his problem is instability. She believes his problem is the hip dysplasia and how it would affect him in the future. She believes he is probably going to be symptomatic for a very long time but if we wait until he is older it is a much bigger surgery. She says that any patient without SB she would take directly into the OR but with him, it's real controversial. 'Do we worry about it enough to think he needs surgery.' She is interested in what her partners would say. She is going to talk with her colleagues and revisit his case in six months. Tentatively having surgery this summer. His right foot is turning inward pretty badly as well. She says we can correct both of these issues at the same time.

August 1, 2017 "Summer happenings"

I have had a lot of fun this summer staying home with Rayden. He grows and changes every day. I am so thankful for this time with him. He talks so incredibly well. He is an absolute joy to be around. Here are a few cute videos of some of the latest things he is up to.

Saying the Blessing: July 4

Walking at Restaurant: July 9

Singing Jesus Loves Me: July 19

8 Independent Steps with his Henry's: July 21

Tunnel Slide: July 31

Reading: August 1

June 29, 2017 "Urodynamics Study"

The last time Rayden took this urodynamics study was June 2, 2016. I wrote all the specifics about how this test works on that post if you want to look back and read it. Although Rayden cannot 'feel' the catheters during the urodynamics study, he certainly can 'see' that it was not something he liked! He was lying on that table for over an hour holding mommy and daddy's hands. I hated seeing the worry in his little face and hearing him say "I don't like it." We had to continuously distract him but overall he did very well. No kicking or screaming, just a few little tears. I'm so proud of our brave little warrior!!

Results: Upside--His kidneys and bladder pressures are good. He bladder actually held a ton more liquid this time than his last study. His kidneys are safe and his bladder is wonderfully shaped for a child with SB. Dr. Ross said she doesn't plan on repeating this study unless he begins to develop infections or he is interested in being dry.

Downside--Although the bladder is healthy and can hold lots of liquid, it doesn't squeeze it all out at one time. His sphincter muscle, which is suppose to be tight and hold in your urine, is weak so he can't hold a full bladder from leaking. Therefore it is unlikely that he will be able to be potty trained. Catheterizing will take out all the urine but as the bladder begins to fill back up, the sphincter will continuously allow it to leak. Therefore he will not be dry between catheterizing. Catheterization will not be beneficial for him right now because of the weak sphincter muscle. Dr. Ross said as he gets older we might try it and see what happens. She mentioned different ways to keep him dry-a urinary sling, an artificial urinary sphincter or catheterizing through a mitrofanoff-but these are things we will discuss further when he is older. (all surgical procedures) She also mentioned trying physical therapy to strengthen the sphincter when he gets old enough to understand. Then maybe he could get by with cathing and a pad instead of a diaper. So for now we are going to continue in diapers. Which is just fine with us. Although he can't use the bathroom like other people, it certainly doesn't make him any LESS of a person. He is God's masterpiece. He is fearfully and wonderfully made and we love him just the perfect way he is!!

June 9, 2017 "Henry's and Gymnast"

May 31- An inspirational member of our church, Henry Runion, uses forearm crutches to walk every day. So when Rayden saw them for the first time at UNC he knew exactly what they were. He immediately grabbed them and said "I walking." Now that he has his very own pair he doesn't call them crutches. He refers to them as his "Henry's". I wouldn't have it any other way. Thank you Mr. Henry for being such an inspiration and role model for Rayden to follow.

In this video clip he is using them for the very first time. I know it is going to take him a bit longer to adjust to them than his walker. They don't balance themselves like the walker does. Rayden has to do ALL the work and it's very exhausting for him. I have no doubt that he will get the hang of them soon.

June 9- Rayden's newest trick is to pick his ENTIRE body up with his arms (elbows straight). He can bring his body up over the top of his walker! He can even do it on the floor with his feet straight out in front of him. He has so much upper body strength it amazes me! I'm sure most of that is coming from his gymnastics class at Elite Gym.

May 3, 2017 "Walking"

Rayden can push and pull his walker. It doesn't really matter to him. He's officially a walker!! It's amazing to think how far he has come in only 6 months. With the correct AFO's, twister cables and walker he has really soared. Go, Rayden, Go!!

May 19, 2017 "Hip Surgeon Consult #1"

Our appointment today was a little confusing. We were scheduled to see Dr. Narotam, pediatric orthopaedic, to get fitted for bracing. Last week he consulted with Dr. Cuomo, pediatric orthopaedic surgeon, about Rayden's case. They decided that bracing really wasn't the best option after all. Dr. Cuomo believes that bracing the hips might give us a better shape to the socket but it will not give us a better shape to the thigh bone. So it might look like it's sitting in the correct position but she believes it will not solve the problem. In order to get the hip to actually sit better in the socket Rayden would need surgery. Therefore Dr. Narotam called me to let me know that there had been a change of plans. Rayden would not be getting fitted for a hip brace. Instead, we would keep our same appointment and he would pull Dr. Cuomo in to consult with us. The only problem with the scenario is that Dr. Cuomo is extremely busy. She didn't really have time to leave her scheduled patients to come and talk to us. She advised Dr. Narotam of her plan so he could relay it to us.

Rayden's right hip is 25% uncovered by the socket and his left is 50% uncovered. His socket bones are not curved around the hip joint. Instead of being curved like the letter C, Rayden's hip bones are actually tilting in an upward angle like the letter V. This means that the more he walks, the bones will gradually drift upward and OUT of the socket. Dr. Narotam doesn't believe it will happen all of a sudden, but he said there is no doubt in his mind that this WILL happen. They believe that surgery on Rayden's hips is something that needs to be done sooner rather than later.


The proposed surgery is called a Femoral Osteotomy. They would cut the femur (thigh bone) and point it 

more inward so that the head of the femur goes right into the middle of the socket not up and out. Then they would re-attach the bones with a plate that will hold the bone into an 'L' position. Hopefully the hips would then start to grow CURVING around the joints instead of going upward like it is right now. The recommendation is to do both hips at the same time because he would be off of his feet for several months in a spica cast from the stomach down.

After searching through old x-rays, Dr. Narotam found a hip x-ray from almost exactly a year ago. This film revealed that Rayden's hips were in the same position then; meaning they haven't really changed in a year! So their consensus is to actually wait another 4-6 months giving Rayden more time to advance in walking. If it hasn't gotten worse at the next visit then we will continue to watch it. Maybe Rayden actually DOES have enough strength in his muscles to stop the bone from popping out of joint...

This all sounded so barbaric to me! Like they were going to turn my baby into a bionic person ("we can re-build him"). I'm aware that things like this have to be done, but as I sit and ponder on them actually cutting his legs in two it breaks my heart! Do we really allow them to do this to him? Is it what he needs to be able to walk in the future? Dr. Narotam says they only do this surgery on people that have the potential to be life-long walkers. They want to preserve his ability to walk and keep him out of a wheelchair. Without this surgery it would be so difficult for him to walk. He would expel so much energy that he would tire out easily causing him to give up and lean toward a wheelchair. We certainly don't want to crush his ability to walk... God, please give us the answers. Ultimately the parents have to give permission to do any surgical procedures. Doctors can make recommendations but they don't really make the final decisions. It's so hard to know what to do. Things we do now can help or hinder him in the future. Yes, I lean on God for my strength, knowledge, and answers but it is extremely hard not to worry.

May 5, 2017 "Three more appointments"

May 4

1-Went for an x-ray because Dr. Narotam suspects Rayden's hip may have slipped out of joint. 

2-Ophthalmology- Dr. Grace says Rayden's intermittent exotropia is getting worse. She says his left eye "just goes on vacation." It turns outward sometimes which causes two different pictures to be sent to the brain. Dr. Grace is really concerned about the vision in his left eye. She says people misunderstand the definition of lazy eye. It actually means low vision. It is not communicating with the brain correctly. If it's not corrected by age 7 the brain will start to ignore the eye causing permanent vision loss. 

I have been really confused. I thought the patching was correcting his crossing. Dr. Grace says patching works on vision but she doesn't believe his crossing is due to vision. She believes there is other stuff going on. (neurological deficit)

Her recommendation is to increase wearing his patch from one hour a day to two hours a day. If there is no improvement in six months, age 3, she will recommend surgery. They will operate on the muscles to bring the eyes closer together. This will train his eyes to work together for one picture signal to the brain instead of two. Ultimately she is trying to prevent permanent vision loss in his left eye. 

May 5

1-Orthodist-We went to Wilmington this afternoon to get Rayden's twister cables adjusted. He apparently has gone through a growth spurt and they were too short. 

Of course, we had to stop by and see Alex at work. Rayden sure misses his brother. 

2-X-ray results- Here is the email I received from Dr. Narotam this afternoon:

So the hips are in place in the socket which is good news, BUT the left hip (your right) looks a little "dysplastic" which means the socket is not deep enough to keep the hip in place. I suspect the the hip (the oval shaped bone) will progressively move out of the socket over time. 

I think it would be worthwhile to try a hip brace at night to try to prevent progression of the hip out of the socket and hopefully improve the shape of the socket. I suggest you call us to set up an appointment in the next couple weeks to get this going. We can and will definitely talk about this more when we see you. 

So in summary this is a MILD problem now, but very likely to get worse. Bracing is our best hope to fix it without surgery, but the chance of success is low because the muscles around his hips are weak and may not keep them in the socket - so surgery may be the next recommendation if the brace fails UNLESS we are convinced that surgery would not make a difference. 

Needless to say I'm not very happy today!! Two days in a row we were told Rayden may need surgery in his future. He could really use your prayers.