July 30, 2020 "MRI, renal ultrasound, etc."

We have kept Rayden very isolated this summer due to the Corona Virus. We have not taken him out in public to the grocery store, department stores, restaurants, or even church. He has not gone ANYWHERE!! His Spina Bifida Clinic appointments have been postponed and rescheduled numerous times until finally, his doctors said he really needed to have some test done in order to stay on top of his care. The hospital only allowed one adult to accompany the patient so Rayden and I had to do these visits alone. Rayden is a 'big boy' now so it wasn't as bad as it used to be. It was very strange having to wear a mask the entire day and there were very few people in the hospital actually. Rayden had to have an MRI, x-ray shunt series, renal ultrasound, blood work and meet with two of his docs. 

MRI- I cannot be more proud of Rayden!! He truly is a BIG BOY now! He went right into the MRI exam room and knew exactly what to do. (I have been explaining the process to him for a week.) I could tell he was a tiny bit scared but my brave boy did it anyway. He placed the ear plugs in his ears and laid down on the bed waiting for the helmet. When they started to move the bed he reached for my hand and asked if I was going to stay. I told him I wouldn't leave his side and he squeezed my hand with both of his little hands the entire time. He DID NOT CRY A BIT!!!!!  When we met with Dr. Elton to adjust his shunt he stated that Rayden's scans looked good contrary to what his new student thought. (He had a student doctor with him) He said he had to show his student Rayden's massive hydrocephalus from birth so he could see how far he has come. Let's take a look at a normal brain MRI beside Rayden's MRI. The white is fluid. 

Normal MRI

Rayden's MRI 

Rayden's MRI from birth

Normal MRI

Rayden's MRI

Now that you have wrapped your brain around all the fluid Rayden has inside his skull, take a look at the darker areas. This is his actual brain muscle. So as you can see, a lot of his brain is either missing or under-developed. Most of the damage is in the back of his brain. Dr. Elton was not surprised to hear that Rayden was diagnosed with a non-verbal learning disability. He says his pace of learning to retain information will be slower than his peers but he also reminded me that before birth they thought he would be SEVERELY handicapped. By no means is he severe! He asked me about his ability to recognize letters/numbers/shapes, and I told him how Rayden struggles with this. Again, he was not surprised. The occipital lobe is located in the rear of the brain. Rayden is scheduled to see a neuro-opthamologist from Duke next week and Dr. Elton said he would not be surprised if she found that he has permanent visual field loss due to the damage to his occipital lobe. Obviously Rayden's brain isn't built like everyone else's. His brain has to "re-route" things so it may take longer for him to figure things out because his brain has to figure out which part is now going to take on the job that the missing parts were suppose to do. It's kind of confusing but miraculous too. Rayden is so intelligent so that leads us to believe he will eventually get the academic stuff down pat too. Since his scans haven't really changed in 2 1/2 years, Dr. Elton said we could probably go another 2 years before seeing him again. 

X-ray shunt series- Look at my big boy during his X-ray shunt series. This requires several x-ray images in multiple positions. Rayden is a pro at this so no tears here as well! He had to take his mask off because it interfered with the images. 

Renal Ultrasound and labs- Here again, not Rayden's first time. He is very familiar with this exam. He doesn't like the gel on him and wanted to hold my hand again, but no tears. The only time he cried all day was during the blood work. I try to prepare him for everything so he knows what to expect. I kinda left this part out until the last minute. Of course, when I told him he quickly told me he didn't want to do the blood work part. I am very proud of how he handled it though. They had to stick him twice. He kept saying "Take it out!" and "Stop!" but he did very well. We met with Dr. Ross over tele-medicine for the results. His blood work looks good. She said his ultrasound was a little concerning though. It revealed that his kidneys are growing and look normal but they are a little more echogenic than they have been in previous studies. In an ultrasound the kidneys should be about the same color as the liver. If they are whiter they are echogenic.  Echogenic kidneys can be a normal variant but can also indicate an underlying kidney disease. She wants to send him to the pediatric nephrologist to check this. She doesn't feel like its urgent because his creatinine levels in the labs were good. He was followed by a nephrologist when he was younger because his kidneys were not producing the hormones to regulate his blood pressure. He was on medicine for a while but it finally resolved itself. Maybe this will too. Dr. Ross also wants to do a urodynamic study soon to discuss his options for bladder continence surgery when he turns 7 or 8 years old. 

I am reminded every time I take him to the doctor that our little MAN is a true Miracle. Yes, he has obstacles to over come and will always have mountains to climb. But, think of the view he can see from the top! I pray this blog will help him see how far God has brought him.