June 22, 2018 "Surgery #10-Strabismus"

We have been watching and waiting for this surgery for quite some time. We have been patching Rayden's eye 4 hours a day for about two years now trying to strengthen his eye muscles. With this surgery, HOPEFULLY, he will no longer have to do patch therapy and his eyes will stop giving mixed visual signals to his brain.

We checked in at UNC around 7:30am. Dr. Sara Grace came out to say hi around 7:45 and give Rayden a little smiley face beside each eye. (Markings for surgery)

Around 8:30 they took us back to pre-op where we changed Rayden into some cute PJ's and spoke with nurses and anesthesiologists. Rayden has such a super social personality and just continued to talk to everyone. The only time he got upset was when the nurses had to put three different kinds of eye drops into his eyes. It took two nurses and both parents to hold him down. After that, Rayden was a little fearful and clingy. Although this is Rayden's 10th surgery, it was a very different experience for us; maybe because of his age. The nurses brought in some stickers and smelly rubs so he could decorate his gas mask hoping to alleviate his anxiety.

Around 9:30am they allowed me to get all dressed up and carry him into the operating room. After some introductions Rayden and I sat in a little chair beside the bed. All the nurses and docs smelled Rayden's strawberry flavored gas mask before hooking it up to the machine. I held Rayden in my lap and he was asked to blow through the mask to blow up a green balloon. He did, but quickly got a taste of the medicine and didn't want the mask anymore. I had to forcefully hold it onto his face for about a minute, although it seemed like an eternity. As soon as he drifted off to sleep they took him out of my lap and laid him onto the table. Dr. Grace walked over and hugged me tightly. When I looked up she was crying too, saying "You did great, Mom. I couldn't have done that!" She walked me out to the waiting room and hugged me again reassuring me that she would take care of Rayden.

Michael, Nanny Linda, Nanny Jane and myself went to get some breakfast in the cafeteria just to kill some time. This surgery was expected to take 2 1/2 hours. When we returned to the waiting room we sat staring at his number on the board waiting for it to change colors. It took the entire 2 1/2 hours!! At 12:00 Rayden was finally in recovery. Dr. Grace came out to tell us that the surgery went very well. She stated that she took pictures of his optic nerves before surgery. They remained swollen as seen in the pictures she has taken several different times this year already. (See previous posts for more info.)

During the surgery she noticed that the muscles that pull the eye upward were very tight so she moved them back. She also moved the muscles that pull the eye outward. So two muscles on both eyes. (If you look at the photo of him in his stroller you will see his left eye is looking upward while his right eye is looking outward.) Dr. Grace stated that his eyes may be very sensitive to light so he will need to wear sunglasses. He may have bloody tears for a couple of days, and red eyes for two weeks. He has tiny dissolvable stitches on the white part of his eyes. He should only need tylenol and/or motrin, and some antibiotic ointment. We can not get water in eyes for the next two weeks either. Dr. Grace said this may not be a perfect solution, our goal is to improve eye wondering by 80%. I pray we do not have to do this again and that God's mighty hand makes it 100%!

When I went to see Rayden in the recovery room they had already taken the breathing tube out, thank God! He was crying out in pain so the nurse gave him fentanyl in his IV and some oral oxycodone. He continued to cry out every now and again but only for a minute or two tops, then off to sleep again. It was terrible watching tears of blood flow from his eyes down his cheeks. I felt so helpless. I prayed for God to take the pain away from my baby. He held my hand, gritted his teeth, and squeezed my finger the entire two hour drive home. I believe God heard my prayer because he continued to sleep the remainder of the evening and all night!


Saturday morning when he got up he was ready to eat and play, although he didn't really want to open his eyes much. We kept the house as dark as possible. He began getting some swelling later in the evening and I got concerned but it eventually went down as well. The white parts of his eyes remain blood shot, but at least he is no longer crying bloody tears. He will not allow us to put the ointment into his eyes so I pray he doesn't get an infection.

May 14-17, 2018 "Severe dehydration"

Where do I begin? This past week has been a roller coaster, literally!! Rayden started have diarrhea Saturday afternoon. It continued into Sunday pretty severely. He was drinking Pedialyte but it would literally run right through him. Monday I called the doctor around 10am. By the time they called me back at 4pm he had already slept for five hours straight and I had changed around 35 diapers. His doctor suggested we take him on to the UNC ER. Rayden started throwing up about 30 minutes into our drive to UNC. He continued to sleep the entire way there. Upon arrival (7pm) they took us straight back to triage. Rayden's blood pressure was low and he was still lethargic (sleeping). The triage nurse escorted us to a room in the pediatric wing of the ER. The doc came directly in and wanted to start an IV. Both ER doctors seemed concerned about Rayden's low blood pressure, high heart rate, and lethargic appearance. Luckily they were able to draw blood and begin the IV in Rayden's foot where he has no feeling at all. He didn't seem to care, he was really out of it!! The blood work came back that his sugar was very low. When they checked it with a meter it read 60. (Normal blood sugar range for babies to 5 years old is 100 to 200.) That's when things got weird. The nurse brought back a very fat syringe filled with sugar water. She called it a bolus. She pumped that entire thing directly in Rayden's IV site. Then the nurses started taking turns drawing the IV solution OUT of the bag and PUSHING it directly INTO his IV site fast. I asked why they were doing this because the IV was dripping. The nurse stated that it wasn't fast enough. All this time Rayden was just laying there asleep, completely knocked out!! He had been asleep for over 8 hours! They said this happens when you become severely dehydrated. They continued pushing fluids for a few hours. When he still wouldn't wake up they called the floor doctors to come. One doctor used an ultrasound machine to look at Rayden's stomach. He was looking at the inferior vena cava. Somehow this told him that Rayden was severely dehydrated and would need lots of IV fluids so they admitted him to the hospital. We arrived in room 6W21 at 4am. What a very long night in the ER. Rayden continued to sleep throughout the entire ordeal. His IV blew at 5am and they had to call the PICU team to try to get another line. The PICU team arrived at 7 and was able to get another IV in Rayden's foot, this made 6 sticks for IV but at least he didn't feel them. Rayden didn't wake up until 8am Tuesday morning (21 hours straight). That didn't last very long though. After a few screaming belly pain episodes and a few more stooled diapers, he went back to sleep by 9am. He slept a few more hours and woke up at 11am. By 1pm he was screaming in pain again. Then back to sleep a few more hours. 

This roller coaster continued for three days! They would reduce the IV dripping only to increase it again. One minute he was up talking, the next he was back asleep. The doctors sent his stool off for testing but it came back negative for salmonella or e-coli. They started to think he was having a shunt malfunction but I believe his little body just wasn't strong enough to stay up for long periods of time yet. By Thursday morning they reduced his IV and he was tolerating liquids without Zofran. 

By lunch they unhooked the IV and we were discharged at 2pm. I thought this whole nightmare was over until Rayden threw up all over the van on the way home! Then he started having watery stool all over again! I refused to take him back to the ER and just continued to give him fluids at home. 

By Friday afternoon he actually asked for something to drink and was able to keep crackers in his stomach without being followed by an explosion of poop. I knew then he had finally killed this MONSTER VIRUS. 

"SEE YA LATER, UNC!!" 

May 3, 2018 "Optic Nerve Solution...Finally!"

Have I said lately how much I LOVE our UNC doctors? Here is another example of what makes them so great. Dr. Grace has been just as worried about Rayden's optic nerves being swollen as I have been. She has messaged me numerous times through this long process, some even late at night just to calm me down. Today she even told me she got a second opinion ON HER OWN, from Dr. El-Dairi, Pediatric Neuro-opthalmologist at Duke. Now if this doesn't speak of her genuine concern and compassion for Rayden I don't know what does!!

Since Rayden's optic nerves have not changed since we first noticed it in January, all three specialists, Dr. Grace, Dr. Elton, and Dr. El-Dairi, agree that Rayden's optic nerves must have irreversible nerve damage from his massive hydrocephalus at birth. Since he is showing no other symptoms and his MRI's are unchanged, they believe this is just what his optic nerves are going to look like. If this were anyone else, without Rayden's background, it would be an emergency situation.

Even though Rayden's vision was better today (20/40 instead of 20/80 in the left eye), Dr. Grace believes there is already some degree of vision loss from the optic nerve damage. She believes he may have some peripheral vision loss that we won't be able to identify until he is older.

Strabismus eye muscle surgery is scheduled for June 22.

May 2, 2018 "Rayden climbing a slide"

You have to watch the video to the end to feel the JOY! After school today Rayden and I went to his little school playground. I’ve often wondered when/if he would be able to climb a slide like other kids. Today I saw that he could!! I am overjoyed for him. 

The steps are not too steep and the hand rails are perfect for his little hand to grasp. Most other slides are the complete opposite. I am so happy that he is able to experience the joy of sliding like other children. He wants to do it over and over again.

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