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

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

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

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

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

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

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

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

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

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

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