July 12, 2016 "Out of casts!"

Rayden was all smiles as we started our trip to UNC today. We have been counting down the past 12 days until Rayden could get these casts off. No matter what the doctor said, Michael and I decided that Rayden deserved a break from casts and they were coming off TODAY!! Of course we were praying that her last ditch effort actually worked and his left foot was in the correct position this time.

In this video clip you can see Rayden's casts being removed. He is always so brave. Most children scream and cry during this procedure. You can see the fear in Rayden's face but he is not screaming or crying. He is the toughest little fellow I know.

Dr. Cuomo said his feet look much better. She is still worried about the left foot though. She wants us to do lots of stretching to dorsiflex that foot. IF we can keep it this way then we will not have to do another surgery although she's afraid that left foot will give us problems.

Rayden got his new superman AFO's for the daytime. He also got little boots with a bar in between to wear at night. Everything was going smoothly. We were all so happy to be free from casts! The excitement dwindled within 30 minutes of being home though. Rayden started crawling on the floor. After being in casts for 11 weeks straight, his legs were very weak. I picked him up only to notice that his left foot had slid up in the AFO. I knew this was going to cause problems. After re-adjusting it numerous times I decided to send a picture to Dr. Cuomo hoping she would have some suggestions.

 

 

After dinner we decided to put Rayden in his little pool. He hadn't been able to even take a bath in 11 weeks, I knew he would enjoy this! It didn't take too long for him to start splashing away! 

I thought after this long, eventful day that he would sleep well, but I was wrong!! He absolutely hated these boots with the bar. He woke up every 30 minutes ALL NIGHT LONG!!!!!! He can't sleep! Now what? I pray that he will soon get used to them and that Dr. Cuomo has a suggestion to stop his foot from sliding in his AFO's. 

July 1, 2016 "Casting #21"

Rayden has been confined to these casts for over 2 months now (9 weeks)! He is so ready to be free. He has started pushing on them and pulling on his toes. He wants OUT!! We have been counting down the days until Rayden can finally get these casts removed for good. That day had finally arrived!! I was really afraid of what would happen though, because I received a call yesterday stating that his AFO's had not arrived! Without something to hold his feet in the new corrected position they would start turning back in (the nature of the beast!). The nurse suggested we just stay in the casts another week while we wait on his AFO's. Of course, we did NOT want to do that. Rayden has pulled his time. He deserves to be free!!!! After some 'confrontation' the nurse decided they would find something in the office to hold him until next week.

We arrived at our appointment on time but Dr. Cuomo was running over 2 hours behind schedule so we had to wait. I didn't really mind. We've been waiting 9 weeks to get these casts removed, what's another two hours? Rayden was the entertainment in the waiting room. He is such a little character. He was crawling around, smiling at everyone, telling them "Heah!" and laughing. Everyone seemed to enjoy watching him and it made the time go by faster. I also got in a little testimonial time as the conversations turned to me explaining his condition, doctor's prognosis, and God's miracles!

Waiting in the exam room for so long is a totally different story. I don't want Rayden crawling around on the exam room floor so we do just about anything to entertain him. A busy little toddler closed up in a tiny room makes some desperate silliness as shown in this video clip. 

Rayden was scared to get the casts removed but he didn't cry. He just held his Mommy tight. He's the bravest kid I know! As I was washing his feet and legs I immediately noticed his left ankle was still pointing downward (like he had on a high heel shoe). He even had an indention in the back of his heel. Something was not right. I started stretching it up like we used to do on a daily basis, praying the entire time that the doctor wouldn't have bad news when she saw it. But it didn't work!!!!!! Dr. Cuomo was not pleased with the left foot at all. She believed the continuous slipping of that cast and possibly incorrect casting has caused the scar tissue to heal in the wrong position. She says if we don't fix it very soon the damage is going to be permanent and she fears it may already be too late.

She had planned to put Rayden in the braces (boots) with the bar in the middle just until his AFO's arrived. The right foot is ready for braces but the left one is not. The braces are made for feet that are flat and of course Rayden's left foot is NOT flat right now. Therefore it would cause a lot of skin problems forcing us to remove them. This would leave the right foot without a brace compromising its' progress. (What a mess!)

When I asked her what we needed to do she hesitated for such a long time. I could tell she certainly didn't want to say. She looked up at me and stated that she would have to perform another surgery to release the scar tissue. Tears immediately filled my eyes as she jumped up and hugged me apologizing. "NNNNOOOOOO!! Why does this keep happening?" To make matters worse she thought the best thing to do for now was to put him back in casts for 12 more days as a 'last ditch' effort to fix it. She didn't seem very confident in this desperate final attempt working though. If this does not work, she said we had two choices 1-surgery, 2-just face the fact that his foot will never be right and make special fitting AFO's with one high heel.

Rayden never ceases to amaze me. He seems to just accept things and move on. (I wish I had half of his strength.) He just laid back and fell asleep as they placed casts #21 on his legs. Dr. Cuomo bent his left knee really far in hopes to prevent it from slipping this time. She even put indentions above the knee as another means of prevention.

As I sit and dwell in the fact that my poor baby is casted yet again, and possibly facing another surgery I feel so defeated. I was so excited to finally be able to work on walking with him and now... another set back!!! I just don't understand why these things keep happening. I am reminded that nothing ever goes according to the books where Rayden is concerned. As Dr. Elton told me when his ventricles wouldn't decrease in utero, "Rayden doesn't follow the text books. He writes his own book." I know I can't dwell in the negative and I'm reminded that this is not as bad as some people have it right now. I know all things happen for a reason and God has paved the road he wants Rayden to travel. I just wish his road didn't have to be so bumpy. 

June 2 & 9, 2016 "Urodynamics Study" & "Casting #20"

June 2, 2016 "Urodynamics Study" 

A urodynamics study is a procedure that looks at how well the bladder, sphincters, and urethra are storing and releasing urine. It focusses on the bladder's ability to hold urine and empty steadily and completely. It can also show whether the bladder is having involuntary contractions that cause urine leakage.  

The last time Rayden had this test done he was only 3 months old and slept through the entire thing. I was really worried about how he would handle being strapped down to an examining table for so long now that he's an active toddler. Rayden was absolutely amazing during the hour long procedure!! I stood beside him the entire time wearing that heavy, hot led vest they make me wear because of the x-ray machine.

The procedure is such a terrible process. They place little sticky monitors all over your bottom and lower belly. They place two catheters into the bladder. One is to fill up the bladder and the other to measure the pressure in the bladder. They place another catheter in the back passage which allows the pressure inside the bladder to be compared with the pressure outside the bladder. I was already sweating bullets in the led vest but then I got really concerned because the first nurse tried three times and couldn't get the catheter into Rayden's bladder. The other nurse got it on the first try though. Once the catheters are in the correct position, fluid runs into the bladder at a controlled rate. During this time the nurses are collecting data on the computer, taking pictures with the x-ray machine and looking for leaks.

Dr. Ross says he has a good bladder but he is leaking quite a bit. She says the urine comes out which keeps the volume low and protects his kidneys. She says it's actually the perfect situation because if his bladder was just sitting there squeezing all day the pressure may shoot high and mess up his kidneys. The downside is she believes he will have extreme difficulties with potty training. His muscle is just not going to be strong enough to hold the urine in. He doesn't really have the ability to empty his bladder either. Of course, we will talk about other options when the time comes. Here again, it's one of those wait and see situations. I'm just thankful we don't have to catheterize him for now and we can just continue doing what we are doing.

June 9, 2016 "Casting #20"

Well "Mr. Houdini" has done it again! He has somehow managed to slide out of his cast for the fourth time!! This one was even glued on! We had to travel to UNC again to be worked in to see Dr. Campion. After the nurse removed the casts Rayden got fitted for some new AFO's. They should arrive in three weeks, just in time to get out of the casts for good (we pray)! While we waited to see Dr. Campion, we had a lot of extra time to examine Rayden's feet. He had two blisters, one on the tops of each foot where the feet and legs meet. They didn't look too bad though. His right foot looked wonderful! I have never seen it so straight and actually pointing up at 90 degrees like a normal foot! 

I was very upset when I realized Rayden's left foot was nowhere near 90 degrees! It was almost as straight as his leg! I guess that's what happens when the cast slide down repeatedly!  When Dr. Campion came in he called Rayden 'Houdini' as well, I suppose that's his new nickname, haha! He removed the bandages so we could see his surgical scars. I was really impressed. No redness, swelling or bruising. They looked really good. He did a lot of stretching on the left foot and was actually able to get it back up to 90 degrees! (I just pray it stays that way now.) He proceeded to glue on Rayden's 20th set of casts. Believe it or not, Rayden was so tired that he actually slept through the entire thing!!!!! I told you he was a pro at this.

May 26, 2016 "Spina Bifida Clinic Appointments"

What a long day. We left home at 8am and returned at 5:30pm. Rayden was wonderful. He actually does really well for a baby being pulled from doc to doc. I suppose he is use to it by now.

1. Orthopaedics- We were not scheduled to see orthopaedics today but last night we noticed Rayden's left cast had slipped terribly (3rd time so far). Even though neither one of Rayden's usual orthopaedic doctors were scheduled to be in clinic, we HAD to see someone because this left cast had to be removed. We saw Dr. Campion. He was very nice and Rayden seemed to like him. After the nurse cut the cast off we were able to see his leg. Of course we couldn't see his incision because it was still bandaged up but there was no swelling and his ankle looked ok. Dr. Campion examined Rayden's ankle and said everything looked good for only 1 week post-op. He said casts slip sometimes but Rayden must be a "Little Houdini". So he used glue this time to put on cast #19.

2. Renal Ultrasound-I can not even believe how great Rayden did with his ultrasound this time. I thought he would cry just because he was having to lie down and be still, certainly NOT something he enjoys doing! He was propped up on a pillow while the technician completed the ultrasound. Every time she squeezed new warm gel on his belly he screamed but it didn't last. I held his hands while Michael fed him little oyster crackers and he just watched the screen. It was over before we knew it and Rayden didn't seem to mind at all.

3. Urology-Dr. Ross said the ultrasound showed a little difference in the kidneys from the last measurement but she's not worried. She is going to follow up with another ultrasound in about 6 months. She was also very pleased that we took Rayden to the nephrologist and got his blood pressure under control. Rayden's high blood pressure is due to his kidneys not functioning properly so she is going to do another urodynamics study in the next couple of months. This procedure looks at how well the bladder, sphincters, and urethra are storing and releasing urine. It focusses on the bladder's ability to hold urine and empty steadily and completely. It can also show whether the bladder is having involuntary contractions that cause urine leakage. She also wants to check his Vitamin D levels the next time we do lab work. She said Vitamin D deficiency is common in children with spina bifida because they are not as mobile and have chronic kidney disease. After examination, Dr. Ross said Rayden's hernia incision and testicles look great after the corrective surgery she did in September. She said he looked incredible!! Being the most loving baby in the world, Rayden had to kiss her several times. It just seemed to melt her heart and she begged to take him home with her!

4. Neurosurgery- Melody was impressed with Rayden's progress as well. His head circumference is 48.5 cm growing 2 cm in 4 months. His shunt was still programmed at 2.0 which is good. She is scheduling a rapid sequence MRI scan the end of July to monitor his shunt though.

5. Dr. Alexander-We discussed getting more physical therapy and occupational therapy. With Rayden having a moderate (not mild) physical delay (only performing in the 10 month range) he says this warrants more therapy. He wrote a prescription to send to the insurance company in hopes they will cover more visits so we don't have to pay so much out of pocket. At our last visit Dr. Alexander gave Rayden a goal of saying two words when he returned. Rayden blew that goal out of the water! He was impressed that Rayden can say 12 words! He also wanted him pulling to stand. Well, Rayden met that goal too, even in casts!!! He wants to see him back in 5 months. Rayden's new goals are to double his words, around 25. He said if he wants extra credit he could even try some two-word combinations. He also hopes to see him taking steps with a walker and scribbling with a crayon. We couldn't check his length and weight because of the casts but he weighs roughly 26 lbs.

6. Occupational Therapy-We were asked if we would allow an occupational therapist student to sit with us during all of our appointments today so he could learn how clinic worked. (Rayden was the only patient they had today with a programmable shunt and he wanted to see that as well.) He was a very nice young man and Rayden showed him all the things he could do. The occupational therapist was impressed with Rayden's fine motor skills as well. She showed us some easy to make activities to build his upper arm strength and refine his finger dexterity that we really like using velcro, wooden blocks, and a peg board.

Rayden, Jaxon, Aaron

Rayden is an amazing kid, but he's not the only amazing kid with Spina Bifida. We have been very fortunate to have met and kept in touch with a few extraordinary families. The best part of our trip today was actually spending some time with them. Rayden enjoyed playing with his little SB friends (Super-Buddies). I believe this was the first time I've ever seen him play without me sitting on the floor with him!

May 19, 2016 "Surgery #9"

Rayden's bilateral posterior clubfoot release surgery was scheduled for 7:30 am. Since we had to check in by 6:30 we decided to spend the night at the Ronald McDonald House. We haven't had to stay there since Rayden was in the PICU in July. The renovations are complete and it looks beautiful. We went for a walk outside to look around. Rayden spotted the wagon and just had to take a spin. Trying to get him to sleep was a little difficult but he finally gave in around 10pm.

We arrived at UNC at 6:30am, checked in and went straight upstairs. After a quick goodbye kiss to family, Michael and I took Rayden straight into pre-op. Rayden knew something was going on. He DID NOT want the nurse touching him! He said 'NO' to the ID bracelet, pulse oxygen, blood pressure and weight. Poor thing. We spoke with the anesthesiologist and Dr. Cuomo. She reminded us that she would make a v-shaped incision in the back of his ankles so that as he grows the scar will almost straighten itself out. Then she will have to divide the Achilles tendon in 

order to reach the other tendons in and around his ankles. She will release ligaments and capsules around the joints and between the bones. This will allow the bones to move into the position they are suppose to go in hopes to ultimately change the final shape of his bones. On her way back out of the ankle she will resect (cut out) a portion of his Achilles tendon, enough that it will hopefully NOT grow back together. She also reminded us that she would make a medial incision as well to release tight tendons on the inner part of each foot. She is worried that his skin will be really tight so we may have to do cast changes every two weeks throughout the six week recovery. After talking with the anesthesiologists and Dr. Cuomo, the nurse took Rayden away at 7:30. Although this is Rayden's 9th surgery, he has never been put to sleep for more than 1 1/2 hours. This surgery was expected to last 3 1/2 hours. I was really worried. I was also anxious to know if the anesthesiologist could tell if Rayden could feel anything.

Michael and I were very thankful family came to support us during this long wait. (Nanny and Papa Bradley, Nanny Jane, Aunt Patsy and Pamela) After eating breakfast in the cafe we still had several hours of wait time. Talking with them made the time more bearable.

Dr. Cuomo came to the waiting room around 11, much sooner than we had expected. She stated that she and the anesthesiologist believe that Rayden could NOT feel anything, which is good and bad. It's good because it will make his post-op care much easier having little to no pain, but bad because this means he has more paralysis than we originally thought. So a blessing AND a curse... Although this is not what we wanted to hear she did follow with some much better news. She was almost excited when she stated his ankles came up super well. So well in fact that she didn't even need to do the medial incisions as she originally planned!! She said his ankles came up to a great position. (more than 90 degrees!) She added that this was the fourth surgery like this she has done in the past couple of months and by far the most satisfying. That sounded great to me. She also stated that his skin stretched beautifully, therefore we only have to recast one time in about 3 weeks. At that time Rayden will be fitted for new AFO's.

I was called back to the recovery room around 11:10. Rayden was just laying there awake looking around. The nurse said that he didn't seem to be in any pain at all. When I got closer he heard my voice and saw that I was there. He immediately reached up and started to moan. Poor baby sounded so hoarse from the breathing tube. The nurses gave him to me and we offered him some juice. His throat was obviously hurting because after only one sip he moaned even more. The nurse gave him some tylenol and went over the discharge papers with me. Even though they believe he is not able to feel anything they are still sending us home with some heavy pain meds, Valiums for muscle spasms, and a stool softener.

When I opened Rayden's diaper bag to get him some clothes he saw all of his paci 'friends'. He just HAD to have them all. He loved on them, taking turns sucking each one as if he were telling them all about his day. Super precious!

Casts #18 are Carolina Blue this time in honor of our awesome UNC medical staff. Although he still has the bend in his knees, I have NEVER seen his feet so straight! I am so anxious to get these casts removed and see his sweet little feet.

Of course, Rayden slept all the way home and another 2 hours after we got there. I suppose the anesthesia had to get out of his system. When he finally did wake up I gave him some Motrin for swelling. He immediately started crawling around on the floor as if nothing ever happened! I'm so relieved that he is not in any pain, but saddened at the same time.

May 9, 2016 "Casting #17"

Well after 17 casts, I'd say Rayden is officially a professional!! He didn't cry at all. He just lies there so patiently like a little adult! He even tried to share his paci with nurse Ruth!

Dr. Cuomo put Rayden's casts on this time. She and Ruth made sure to make his knees bend quite a bit. They even used the glue again to ensure that the casts do not slip. Hopefully these casts will not have to be removed until he goes in for surgery.

Dr. Cuomo talked about Rayden's upcoming surgery next week. She discussed some of the steps as to why it will take about 5 hours!!! It will take a while to get him to sleep. Then she will position him on his belly, which will take some time to get him just right. Then she will spend about 1 1/2 hours on each foot. Followed by casting and wake up time. After she examined him she decided to make two incisions instead of one. 1- In the back to open up the capsule of ankle joint and remove a section of his achilles tendon. 2- Even though he has had lots of casting, there is still too much tightening that is folding his feet inward. He will need another incision on the inside of both feet, in the center, to release this tightness.

We also discussed Rayden's ability to feel his legs but NOT his ankles, feet or toes. She stated how she works with her anesthesiologist during surgery. If his heart rate elevates during surgery she will know that he may actually have more sensation than we are aware. This lets her know more about how much he is REALLY capable of feeling. What we feel on the outside is not NECESSARILY what we feel on the inside! She will relay this info to us after surgery and of course will send him home with pain medication. I am anxious to know what his level of feeling may actual be.

May 10

Rayden had an appointment with Dr. Sanderson, nephrologist. She actually mentioned he may grow out of high blood pressure!!!!! GREAT NEWS!! His goal for the top number was less than 110. After only one medication adjustment these past three months he has steadily been under 110. She wants us to continue monitoring his blood pressures twice a week. I was thrilled when she stated that she was actually on call at the hospital on Rayden's surgery day. She wants me to tell the anesthesiologist that she will be there if there are any concerns and she will be sure to check on him. That was reassuring.

May 4-7, 2016 "Casting #16"

May 4

Bravery--a quality of spirit that enables you to face danger or pain without showing fear.

Although Rayden is now on cast #16, he has not had a cast removed since he was 6 mo. old. (casts 1-14 were from ages 2-6 mo.) We just knew he would be terrified of the loud saw. Yes, Rayden was afraid but he DID NOT CRY!! He just sat there shivering, clinging to his paci. He is the absolute picture of bravery!!! How does a 16 mo. old child know how to be brave? He acted as if he knew this had to be done and he just had to fight back his fear. He amazes me every single day! The entire time Dr. Narotam was putting on his new casts Rayden just layed back on the pillow as if there were nothing going on. He laughed, talked, and played. Think about it...You lie back. People are holding you down, keeping you still. When they finally do allow you to sit up you have a hard, rock shell on your legs. Casting a baby is so traumatic. But Rayden took it like a grown man!!! I wish I had half his courage.

May 6

Rayden received these cool camouflage casts on Wednesday, May 4th. By Friday evening I noticed that his toes had almost disappeared. This means his casts have slipped and can cause major problems. The cast is now causing more harm than good. I knew they had to be removed as soon as possible. I was amazed that his nurse actually answered the phone at 4:45 when I called. She stated that we needed to go to the ER at UNC to get the casts cut off. Realizing this would be a horrific evening, I thought of my friend, Elizabeth Bass Daughtry. She is a podiatrist here in town. She immediately agreed to cut off Rayden's casts for us. This saved us a long drive (3 hrs. round trip) and agonizing wait in the ER that could have been all night!! I know God had his hand in this and I'm so thankful Elizabeth was there and willing to stay late on a Friday evening for us.

When the casts were removed we immediately noticed that he had two blisters on the left foot (front and back) and one starting on the right foot. Water actually gushed out of them. I'm so glad we got the casts removed. Now he has all weekend to heal before going back to UNC Monday to get re-casted.

May 7

He sure had a good time this weekend with the casts off. In this short video clip you can see him 'walking' on his knees and 'talking' about something! ADORABLE!!!

March1-May 1, 2016 "Moments"

Rayden's first four point crawling-March 1

March 9

  Mommy and me Easter morning-March 27

Easter March 27

Rayden driving his cozy coupe-March 25

Emma, Ethan, and Rayden. March 28

Taking my own clothes off. April 3

Swinging. April 16

Rayden is starting to like his swing-April 23

Rayden drives the big buggy at Food Lion-April 30

   

Sweeter than the flowers. April 24

April 27, 2016 "Casting #15"

We never allow Rayden to stand without his AFO's on but I wanted to get a quick video to prove how bad his feet have gotten. As you can tell in the video, Rayden's feet turn in terribly when he stands up. It has gotten worse over this past month. He is now actually standing on his ankles, not the bottoms of his feet. When we straighten his legs and put his feet in the correct position his legs buckle and he just falls down. He cannot continue to stand and walk on his ankles, they will not be able to support his weight. For this reason, we are actually relieved that he is getting casts today. We have to get this process started or it will never get corrected. And what a long process it will be...

Rayden was all smiles as we arrived at Dr. Narotam's office, which is nothing unusual for him. When the word got around that he was there all the staff came out to see him. He greeted everyone with his signature grin and giggle. (Yes, Rayden is a celebrity, haha.)

We took x-rays of his legs first. The technician let me see them before she sent the films to Dr. Narotam. I'm not a doctor of course, but it sure looked like his tibia's were curved slightly. Dr. Narotam didn't show me the x-rays. He just stated that it showed some frontward curvatures not sideways bowing. He said they are not bowed to the sides although it may look like it when he is standing.

Rayden cried for the first 5 minutes of casting. He was so frightened. Who wouldn't be? He was being held down on a flat, hard bed with five heads standing over him. The nurse gave us some toot sweets (sugar water) to squeeze on his paci and he didn't make another sound the entire time!! When it was all over Rayden just looked at his legs kind of strangely. He rubbed the hard, heavy, red fiberglass and actually smiled. Can you believe it?

When we got home he wanted to crawl but just couldn't figure it out. The fiberglass was catching on the carpet, and slipping on the hardwood. I ended up putting some long socks over the casts to help. Of course he wanted to play with his Daddy and I caught an adorable video clip. 

Saturday, April 30

Rayden has had a rough couple of days adjusting to the casts. He has been just lying around, hugging a lot and sucking his paci more than ever. The casts weigh about 1lb a piece. There is also a slight bend in the knees. This makes it extremely difficult to crawl around and almost impossible to stand up. But I know he will find a way to adapt, he always does. I was told Spina Bifida children are the happiest and most determined people. I am seeing that first hand in Rayden. In only two days he is crawling the length of the living room.

March 29, 2016 "Duke-3rd Opinion"

I don't like to say negative things so I'll just simply say that we were NOT IMPRESSED with our visit to Duke today. The doctor sent in a student first that examined Rayden's feet a little but basically that's all. We are used to that so it didn't really bother us. Dr. Fitch came in and immediately asked if Rayden could walk or stand. Rayden stood against the examining table and the doctor saw how his feet turned in. We started telling him that Rayden had spina bifida and that we had fetal surgery. He immediately got intrigued. He said that he forgot they were doing fetal surgeries at UNC. He asked how I got along with that and several other questions pertaining to the surgery. He wanted to see Rayden's back! (He's an orthopaedic. Why did he want to see his back??) He even asked if he had long leg casts (as if they casted babies any differently!). He never touched his feet!!! When I mentioned that UNC wants to do the Achilles tendon removal surgery he just backed up and said "Yes, I think that's what he needs." We had to lead the entire conversation, which I'm not used to. He never asked us any questions. He seemed to be a little lost with the whole conversation. His answers were short with no explanation at all. (Not like most doctors!) We told him a little about the Shriner's visit and he disagreed with the bowing and thought it was due to having so many casts. He thought it would resolve itself when Rayden started walking. He also agreed that we would have a much better outcome if we cut the Achilles tendon out instead of lengthening it. I asked if this surgery would damper any chances of him being able to feel his feet and he quickly said "No." He assured me that they don't remove any nerves so if he has any sensation then the foot surgery will not cause any deterioration of that.

After three of the exact same opinions we have decided to go ahead with the surgery and scheduled it for May 19. Rayden will be casted two weeks prior to surgery and will remain in casts an addition 4 to 6 weeks after surgery.

March 20-21, 2016 "Shriner's-2nd opinion"

We arrived at the Shriners Hospital Sunday night around 6pm. We had the remainder of the evening to settle into the complimentary room and explore. We were absolutely amazed with the facility. Everywhere we looked there were fun and exciting things for children to play with and enjoy. There was even an iPad on the wall in the room!! Rayden enjoyed the Little Tykes car the best. He immediately started turning the steering wheel and making car sounds with his mouth. (How did he know to do that?) He amazingly slept through the night and enjoyed breakfast in the cafeteria Monday morning before his appointments.

We met the first doctor directly after x-rays. He immediately noticed Rayden had significant anterolateral bowing of both tibia's. He also mentioned that his knees do not fully extend but thought that could be an illusion because the bowing is so bad. After he found out that there was no real plan at UNC for the bowing he seemed upset and stated that it definitely needs to be addressed. He thought it was best for us to see their pediatric orthopaedic that specializes in spina bifida, Dr. Peter Stasikelis.

After examining Rayden, Dr. Stasikelis stated that in people with spina bifida the muscles and tendon's end up serving as ligaments that hold the foot in the deformed position. "They never serve a useful function just an EVIL one." He stated that all the doctors around the country agree the only thing to do is find the tendon and cut it out so it won't grow back. He says its probably by far the most common operation in spina bifida that they do. He stated how much he admired UNC's patience with Rayden's feet (14 sets of casts) because he would have cut the tendon's a long time ago! He said it's a fairly straight forward procedure and thankfully Rayden won't feel much discomfort because of his paralysis. He would also recommend cutting his posterior tibial tendons and several other tendons in and around the ankle as well. He also reminded us that we should probably have UNC x-ray the bowing of the legs. He doesn't think it represents the usual bad things because in SB strange things can happen but it definitely needs to be addressed. He also wanted me to tell them that the position of the ankle seems to be a little down/posterior and they will want to adjust for that as well. He said Rayden's feet are really too severe to even go into the AFO's that he is currently wearing so he would chalk this up to a "no brainer!" Rayden clearly needs this surgery or he will not be able to walk.

He continued by saying Rayden will probably be in braces forever more after the surgery. He feels that his quadriceps are "iffy". He doesn't have much in the line of hamstring muscles and no motor function in his feet at all. He says Rayden will need the braces to provide stability under him in order to walk and arm crutches to help support his weight. He doesn't feel that Rayden will ever be able to walk without the help of braces.

Of course he had to add his spill on the future as well... He thought it was important that we know the future so we don't experience a "second loss." Generally when kids turn 10 or 11 years old they will not be able to support the weight of their bodies because their body weight is increasing to full man weight but their muscles are NOT. It will become harder and harder for him and he says Rayden will want to keep up with his peers so he will choose to go into a wheelchair. He didn't want us to blame ourselves when this happens or feel like we did something wrong. (I know he meant well but that's not what I drove 5 hours to hear. It's not like we are going to love him any less. NO, I didn't want to hear that, but ultimately we will accept whatever plan God has in store for Rayden's life.)

We have an appointment with Duke next week for a 3rd opinion.

February 24, 2016 "Ortho surgeon consult"

Rayden pulled up to stand for the first time on Feb. 10 (13 1/2 mo. old). We just couldn't believe it! It was very difficult to capture a picture because he would only stand for about 30 seconds. Even though his feet are turned upside down, inward or backward, we don't care. HE IS STANDING!! Look carefully in the video clip below and you will see that he is standing on the outsides of his ankles as they turn inward. 

Dr. Narotam said it was time for us to consult with Dr. Anna Cuomo about surgery to fix Rayden's foot positioning. Although Rayden has already gone through 14 sets of leg casts and had his Achilles tendons clipped, Dr. Narotam believes the Achilles tendon is so tight that it is pulling his ankles up as well as other tendons inside and around his ankles that are pulling his feet back inward.

Dr. Anna Cuomo, pediatric orthopaedic surgeon, stated that Rayden had descent quadriceps muscles so she believes he will be a walker. Therefore it is important for his feet to be flat. They normally do serial casting in very young children to remodel the deformed bones of clubbed feet. Serial casting HAS improved Rayden's bones but has NOT fully corrected the deformity because the tendons and ligaments are too tight to allow the feet to remain in the correct position. She stated that if we leave the feet in this position for a long time the bones will permanently keep the deformed shape that holds them in the clubbed foot position. As children grow they loose the ability to remodel the bones through casting so then they will have to actually cut the bones to reshape the feet. Leaving his feet in this position will commit him to having bone surgeries later in life and possible amputation! Therefore the goal is to get his feet in position so the bones will actually grow correctly and prevent bone issues in the future.

She is proposing a bilateral posterior clubfoot release surgery. She will make a curved incision in the back of his ankles so that as he grows the scar will almost straighten itself out. Then she will have to divide the Achilles tendon in order to reach the other tendons in and around his ankles. She will release ligaments and capsules around the joints and between the bones. This will allow the bones to move into the position they are suppose to go in hopes to ultimately change the final shape of his bones. The longer we wait the harder it is to change the shape of the bones. On her way back out of the ankle she wants to resect (cut out) a portion of his Achilles tendon, enough that it will hopefully NOT grow back together. She stated that this tendon is the biggest offender. It's not working for him and it's not stretching out. It is just acting as a chronic tether pulling the foot down into the pointed toe position.

That's where Michael and I are really concerned. We are hesitant to allow a surgery that will REMOVE a portion of his body. What if he CAN feel his feet in time? Will this surgery remove all chances of that? Will it make his feet just flop? Will he ever be able to walk barefoot or will he always have to have braces on his feet to even walk around inside the house?

I asked Dr. Cuomo if there were any other options. She stated that she could lengthen the tendon, instead of resecting it, on her way back out if that's what we want. This has a higher risk of recurrence because as he grows the tendon will just tighten back up requiring more surgery. She said she wouldn't recommend it, but she would EXTRA lengthen it IF that's what we are more comfortable with. Either way, she stated that we MUST do something within the next six months because he cannot continue to stand/walk on his ankles. This will cause major skin and bone issues in the future and may lead to amputation.

The Achillles tendon is the largest and strongest tendon in the human body.  It connects the heel bone to the muscles at the back of the calf. The Achilles tendon allows the muscles of the leg to bend and stabilize the ankle joint. It maintains balance while walking, running and jumping and works with the nervous system so individuals know where their feet and body are in space.

 If the Achilles tendon is that important do we really need to remove it? Michael and I are struggling with this decision so we have decided to seek a second opinion before doing anything this drastic. We will be going to Duke and Shriner's Hospital for Children in South Carolina in late March.

February 2, 2016 "High Blood Pressure"

At our last Spina Bifida Clinic appointments Dr. Ross noticed that Rayden's blood pressure had been elevated the past couple of recordings. She referred us to a nephrologist. The earliest appointment Maya could get with Dr. Keia Sanderson's office was March 1. I'm not sure what happened but the nephrologist's office called me the other day and said Dr. Ross reported that Rayden needed to be seen earlier, so she cleared her schedule for Feb. 2 to see him.

Rayden weighed in at 22.7 lbs. He is 30 in. long. His blood pressure was 116/52. He had previous readings with the top number being as high as 122, and 135. Apparently the top number should be between 70-110. 

Dr. Sanderson viewed Rayden's old renal ultrasounds and said that his kidneys look good. His urine sample was clear today as well. Although she is still waiting on the blood work results, she stated that it is not uncommon for children with Spina Bifida to have blood pressure issues because they are 'wired differently'. She believes Rayden's kidneys are not producing the hormone necessary to regulate his blood pressure. His heart is pumping blood too fast which in turn will thicken the walls of his heart over time. If this continues, by the time he is 20 years old he may develop a heart condition. This is certainly not something we want. To prevent this, she suggested starting medication. We will have to keep a log of his blood pressure readings at least twice a week. She will evaluate the log to fluctuate his medicine as needed. 

In the mean time I am trying to get a nurse to come to our house so I don't have to take him back and forth to the pediatricians office twice a week. I am also going to purchase my own pediatric blood pressure cuff and learn how to take it myself. 

January 7, 2016 "CT Scan for fused suturs"

I didn't sleep a wink last night. Although I surrender to God's will, I found myself praying that He would NOT allow Rayden to need this terrible brain surgery. I couldn't stop picturing his skull being ripped apart and the agonizing pain he would have to endure.

We arrived around 9:30 in hopes to visit with my dear friend, Anne Turlington, but that didn't go as planned so we just checked in early. They didn't take us back for sedation until 11:00. As usual, Rayden's charming smile and magnetic personality captivated all the nurses in the unit. He can really draw a crowd! They all wanted to play with him while Michael and I answered questions.

Rayden's main nurse hooked him up to the monitors and soon administered the medicine. It was a clear liquid in a syringe with a little white tip on the end, which converted the liquid into a mist when administered. He placed the white tip into Rayden's nostril and squeezed. He didn't like it at first but soon calmed down.

Just as expected, Rayden fell hard and fast asleep within 15 minutes. Soon after the nurses took him away I got a text from Anne. She had passed Rayden in the hall! Was this irony or angels watching over the two of them?

It took Rayden a little over an hour to wake up from the sedation. He had to drink some juice and eat a graham cracker before the nurse allowed us to leave. Rayden loved this requirement!

We were able to visit with Anne over lunch before we all had to go our separate ways.

It seemed like an eternity for them to call us back to speak with Dr. Elton, neurosurgeon. We visited with Maya and Lisa before Melody came in our exam room to inform us that Dr. Elton had been called to emergency shunt surgery. She did inform us that Rayden's sutures were NOT closed though. So we could relax a little at least!!

When Dr. Elton returned he went over the findings of the CT scan stating that Rayden's skull suitors appear to be open although they are not centered on the top of his head. His left side is a little higher than the right as well. Rayden's head shape is called Dolichocephaly, an elongated head. Dr. Elton stated he would consider Rayden's case just a little less than severe--moderate, I suppose. He said we could purchase a molding helmet to reshape his head, but he has concerns in a child with a shunt and pressuring the skull to change shape.  The helmets also cost around $3000 cash since they are considered cosmetic.

He couldn't get over the fact that Rayden's ventricles had decompressed to normal range! He even stated that he thought they would always be large, but now they are not! He said he wouldn't have ever expected that!! (Prime example of Rayden writing his own book!!) All-in-all Dr. Elton stated he had "nothing to fix!" OUR PRAYERS HAVE BEEN ANSWERED!! Rayden threw his little arm up as if to praise the Lord and Dr. Elton raised both of his arms in unison praising God as well. We love our doctors!!


Other findings: His Chiari II malformation is still there, a little depressing but expected. Rayden's brain is functioning with missing components. He doesn't have a corpus callosum nor a septum pellucidum (both are in the center of the brain). He also has possible colpocephaly, a congential brain abnormality. 

The septum pellucidum is a membrane separating the two lateral ventricles. The corpus callosum is the nerve fibers of the mind that allows communication between the two hemispheres of the brain.

With all that being said, I could go into the problems associated with these conditions but I'd rather just say that Rayden is a little miracle...No, a super large miracle!! My mind wonders back to our time in the NICU when the doctors were telling us that Rayden's brain was so full of CSF that he barely had any brain tissue, no optic nerves to be seen, and would probably never be able to see, and have extreme developmental delays. Fast forward to a year later...Rayden's optic nerves are there and no longer swollen. He CAN SEE! He may be delayed but not to the extent that they were saying. The CSF in his ventricles has decompressed to normal size and his brain tissue has expanded to fill up his skull. Dr. Elton stated (and I quote) "His brain scan is not good, it's GREAT!!" His brain has filled in DRAMATICALLY!" We praise God every day for the miracles he is performing for Rayden and pray that his life be an inspiration to others.