May 26, 2016 "Spina Bifida Clinic Appointments"

What a long day. We left home at 8am and returned at 5:30pm. Rayden was wonderful. He actually does really well for a baby being pulled from doc to doc. I suppose he is use to it by now.

1. Orthopaedics- We were not scheduled to see orthopaedics today but last night we noticed Rayden's left cast had slipped terribly (3rd time so far). Even though neither one of Rayden's usual orthopaedic doctors were scheduled to be in clinic, we HAD to see someone because this left cast had to be removed. We saw Dr. Campion. He was very nice and Rayden seemed to like him. After the nurse cut the cast off we were able to see his leg. Of course we couldn't see his incision because it was still bandaged up but there was no swelling and his ankle looked ok. Dr. Campion examined Rayden's ankle and said everything looked good for only 1 week post-op. He said casts slip sometimes but Rayden must be a "Little Houdini". So he used glue this time to put on cast #19.

2. Renal Ultrasound-I can not even believe how great Rayden did with his ultrasound this time. I thought he would cry just because he was having to lie down and be still, certainly NOT something he enjoys doing! He was propped up on a pillow while the technician completed the ultrasound. Every time she squeezed new warm gel on his belly he screamed but it didn't last. I held his hands while Michael fed him little oyster crackers and he just watched the screen. It was over before we knew it and Rayden didn't seem to mind at all.

3. Urology-Dr. Ross said the ultrasound showed a little difference in the kidneys from the last measurement but she's not worried. She is going to follow up with another ultrasound in about 6 months. She was also very pleased that we took Rayden to the nephrologist and got his blood pressure under control. Rayden's high blood pressure is due to his kidneys not functioning properly so she is going to do another urodynamics study in the next couple of months. This procedure looks at how well the bladder, sphincters, and urethra are storing and releasing urine. It focusses on the bladder's ability to hold urine and empty steadily and completely. It can also show whether the bladder is having involuntary contractions that cause urine leakage. She also wants to check his Vitamin D levels the next time we do lab work. She said Vitamin D deficiency is common in children with spina bifida because they are not as mobile and have chronic kidney disease. After examination, Dr. Ross said Rayden's hernia incision and testicles look great after the corrective surgery she did in September. She said he looked incredible!! Being the most loving baby in the world, Rayden had to kiss her several times. It just seemed to melt her heart and she begged to take him home with her!

4. Neurosurgery- Melody was impressed with Rayden's progress as well. His head circumference is 48.5 cm growing 2 cm in 4 months. His shunt was still programmed at 2.0 which is good. She is scheduling a rapid sequence MRI scan the end of July to monitor his shunt though.

5. Dr. Alexander-We discussed getting more physical therapy and occupational therapy. With Rayden having a moderate (not mild) physical delay (only performing in the 10 month range) he says this warrants more therapy. He wrote a prescription to send to the insurance company in hopes they will cover more visits so we don't have to pay so much out of pocket. At our last visit Dr. Alexander gave Rayden a goal of saying two words when he returned. Rayden blew that goal out of the water! He was impressed that Rayden can say 12 words! He also wanted him pulling to stand. Well, Rayden met that goal too, even in casts!!! He wants to see him back in 5 months. Rayden's new goals are to double his words, around 25. He said if he wants extra credit he could even try some two-word combinations. He also hopes to see him taking steps with a walker and scribbling with a crayon. We couldn't check his length and weight because of the casts but he weighs roughly 26 lbs.

6. Occupational Therapy-We were asked if we would allow an occupational therapist student to sit with us during all of our appointments today so he could learn how clinic worked. (Rayden was the only patient they had today with a programmable shunt and he wanted to see that as well.) He was a very nice young man and Rayden showed him all the things he could do. The occupational therapist was impressed with Rayden's fine motor skills as well. She showed us some easy to make activities to build his upper arm strength and refine his finger dexterity that we really like using velcro, wooden blocks, and a peg board.

Rayden, Jaxon, Aaron

Rayden is an amazing kid, but he's not the only amazing kid with Spina Bifida. We have been very fortunate to have met and kept in touch with a few extraordinary families. The best part of our trip today was actually spending some time with them. Rayden enjoyed playing with his little SB friends (Super-Buddies). I believe this was the first time I've ever seen him play without me sitting on the floor with him!