April 27, 2017 "Spina Bifida Clinic Day"

We left our house at 7:30 am and didn't return until 6:30 pm. Although clinic days are very long, Rayden is a trooper. He absolutely amazed us with his behavior today. He was super cooperative and easy to get along with. Now that's saying A LOT for a busy, little 2 year old. I think I was more frustrated than he was. I had to take his shoes, and cables off about 5 times!! That alone is frustrating. One of our doctors was about 45 minutes late for our appointment, adding to my frustration. Other than that, the day went pretty smooth.


Height: 3' 0.42"- 70th percentile
Weight: 29 lbs. 15.7 oz. - 50th percentile
Although this is pretty average, SB kids need to be below average to support their weight on their feet.

Renal ultrasound pictures

1-Renal Ultrasound- Rayden was a little scared as I lowered him on the examining table but we reassured him that the technician wasn't going to hurt him. We told him that she was going to take pictures of his belly with some lotion. (He likes lotion) He laid perfectly still as the lady took pictures of his bladder and both kidneys. Daddy gave him about three M&M's, which makes everything better!

2-Urology- Dr. Ross says Rayden's kidney's and bladder look wonderful. Although she said he will NOT be able to be potty trained due to the nerve damage, she wants to do another Urodynamics Study this summer to see if catheterizing would be beneficial at all for him as he begins preschool.

3-Nephrology- Rayden's blood pressure's have been doing great on this medication. According to his current weight and height, Dr. Sanderson says that the medication is at its lowest dosage. Since Rayden is not expecting to go into surgery for the next three months she decided to remove the medication on a trial run. We still have to monitor and record his BP weekly. If there is a spike above 110/60 then, of course, he will go back on the medicine. Since Rayden's kidneys do not produce the hormone that regulates his blood pressure we will have to keep a close eye on this his entire life. Prolonged high BP could cause him to have heart problems in the future.

4-Occupational Therapy-  Holly seemed upset that we stopped Rayden's OT to give more time to PT. She seemed to think that he was behind in some areas. Although Rayden CAN scribble with a crayon, she believes he should be "drawing with intention." In other words, she wants him to be drawing circles and lines. She gave me lots of ideas to try at home. Some more fine motor skills activities she wants us to do is threading a pipe cleaner with cherrios or fruit loops. She also said he should be opening bottles and using one hand more than the other. He really doesn't prefer one hand over the other. He eats and draws with both hands. I suppose we have some work to do. 

5-Spina Bifida Clinic Director- Dr. Alexander believes Rayden may be a little delayed after hearing some of the reports from Holly, OT. Rayden continues to use both hands consistently and has not chosen a dominant hand. This is called lateralization of the brain. (Lateralization of brain function refers to how some neural functions, or cognitive processes tend to be more dominant in one hemisphere than the other. The medial longitudinal fissure separates the human brain into two distinct cerebral hemispheres, connected by the corpus callosum.) Dr. Alexander says this is an 18-24 mo. skill. Rayden is 28 mo. so he is a little behind. Of course, Rayden's brain is unlike any other child his age too. He is missing sections (corpus callosum) that may or may not have anything to do with this specific developmental delay. If we can't seem to get the fine motor skills back on track then we may need to restart his Occupational therapy at home. When he gets evaluated for preschool they will be able to tell how far his delay really is. Dr. Alexander actually wants to help develop Rayden's IEP for preschool! I was really impressed by this. Being a teacher myself, I thought I could handle this part. But he reminded me that I'm Rayden's MOM, not a teacher when it comes to writing his IEP.

Rayden's lower legs and feet turn all shades of red and purple from time to time. Dr. Alexander reassured us that it was alright. With Spina Bifida the nerves to the capillaries don't open and close as well. As long as the color comes back within 3 seconds after pressing his toes, it's not really anything to worry about.

Rayden has been examined by countless doctors time and time again. I have never seen any of them do the old hammer to the knee reflex trick. Dr. Alexander did today. Both of Rayden's legs shot up! I couldn't believe it. I didn't think he had normal reflexes. Dr. Alexander says this confirms Rayden's L3 (middle of the lumbar region of the spine) level diagnosis.

6-Physical Therapy- Cathy noticed that Rayden had a nice range of motion but she felt resistance in his muscles, which she believes is due to wearing twister cables all day. She also noticed that his knees don't fully extend and he had some bowing upward of his tibias; not terrible but it is there. She wanted to see how he walked with his walker. She got all the docs out of the rooms to see him walk up and down the hallway so he wouldn't have to do it but one time. They were all amazed at how fast he could go, how upright his posture was, and how he could sling his walker around on a dime. He showed them his 'Evel Knievel trick' and they all laughed. When we showed them he could walk up and down the hallway holding onto only one hand, all their jaws hit the floor. Six months ago Rayden could barely stand up!! Although he's doing so wonderful, Cathy just didn't think he was mature enough to graduate to arm crutches. I disagreed so she went to get a pair from her storage closet just to prove it to me. After she adjusted them and placed them on his arms he wobbled a little but he walked with them. He even said, "I walking." Cathy apologized. She said most kids place the crutches in front of them at first blocking their feet. Not Rayden. He held them out to the side to stable himself and took steps. I give that credit to Mr. Henry Runion, a member of our church. He uses arm crutches and Rayden walks all the way down the church isle to see him on Sunday morning. So when Cathy brought the crutches in, he wasn't afraid of them, he knew what they were used for. He even said, "Henry." 

7-Orthopaedics- As Dr. Narotam watched Rayden walk down the hall, he mentioned that his cables seem to be too short because he can't stand fully erect, like the cables are pulling him down. (We have to get them adjusted in Wilmington). After a long, tedious examination Dr. Narotam mentioned several things. (1) His left leg is much skinnier than his right leg. (2) He believes his tibia torsion is not bad enough to warrant surgery! Yippee!! (3) Although his right foot IS turning in, he can get his feet into neutral position so there is no need for casting right now. (4) His hamstrings are too tight. We need to do a lot more stretches. (5) His knees only extend about 15 degrees. (6) He believes one of Rayden's hips may have slipped out of joint. Ugghh!! His knees did not align and one leg seems longer than the other. We have to get an x-ray next week to be sure. Dr. Narotam says even if the hip comes completely out of the socket they don't really do anything in SB children because they don't have the muscles strong enough to hold the hip in place. Apparently he seems to think Rayden can't feel his hip muscles... This sounded really strange to me. You mean my child will be walking around with a broken hip forever??!! The only real remedy would be to put a lift in his shoe and stretch his hips aggressively to prevent hip stiffening.

Rayden kicked Dr. Narotam's hands while standing up without shoes on--in order to do that you have to have hip flexors and knee extensors. Those are his strong points. His ankle dorsal flexors are week, he doesn't have any strength in his feet. Dr. Narotam believes Rayden will always have to have AFO's but NOT twister cables, yippee!! He believes the twister cables are helping encourage his body to use the right muscles to walk straight. Once his body understands this then he can stop using the cables.