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.

December 25, 2015 "First Christmas at HOME!"

What a difference a year makes! Rayden was only one day old and recovering from his first shunt surgery last Christmas. Therefore we say this is his 'first' Christmas! And what a joyous celebration it was! Our house was filled with laughter and smiles because all our children were home; happy and healthy!

Rayden's first birthday with family. 

 

December 23, 2015 "First Birthday!!"

Happy 1st Birthday!!!

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

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

*Length: 30 in. (57th Percentile) 

*Head Circumference: 46.5 cm. 

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

Rayden loves looking at books. 

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

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

                              Rayden loves his Dawn-Dawn!!

                     

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

December 10, 2015 "Spina Bifida Clinic Appointments"

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

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

Rayden says "No more docs!"

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

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

Dr. Narotam

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

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

A standing device. 

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

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

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

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

November 23, 2015 "11 months!"

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

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

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

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

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

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

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

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

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

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

-

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

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

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

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

October 31, 2015 "First Halloween"

SUPER-RAYDEN!!

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

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

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