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.

A standing device

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. Narotam says the Wheaton brace controls how far he rotates his feet in at night so he 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)