November 10, 2016 "SB Clinic Appointments"

 

Clinic Day is very long. But Rayden is always smiling and spreading joy to every person we meet. In every waiting room he found someone to 'talk' to making them smile. There is no doubt in my mind that God gave him the gift to make others forget their worries and just smile-if only for a minute.
1-Renal Ultrasound
During the renal ultrasound Rayden has to lie on his back and rotate to both sides while the technician takes pictures of his bladder and kidneys. This takes a while so I was really worried that Rayden would not cooperate. I was wrong!! He actually enjoyed looking at the screen because the technician kept telling him she saw Mickey Mouse in his belly. He started pointing at the screen saying, "Me Mouse" and laughing. It was beyond adorable! My heart sunk though when the technician left to get another technician. All I could think was 'something was wrong'. My mind flew back to the day he was diagnosed and the technician left to get the doctor who told us he had SB. I suppose that memory will always be fresh in my mind. Little did I know that she was a student and had to get her work approved.

2-Blood Work
I was the most worried about the blood work. I absolutely HATE to hold my sweet baby down while they poke him and he screams with crocodile tears pouring down his cheeks. I was super impressed with the phlebotomist though. She made sure she found the best vein and only stuck him one time! She filled up three vials as fast as lightning too.

As soon as we arrived at the SB Clinic they informed us that Dr. Alexander had just left very sick so we didn't get to see him. 

3-Urology
Dr. Ross walked in saying, "Oh my goodness, he's amazing! I can't fix things that aren't broken." Of course that sounded great to me! His renal ultrasound was perfect! She was impressed that he hasn't had any urinary tract infections and his poop regimin seems to be working without medicine. The blood work should come back in a few days but she said she wasn't at all concerned about his vitamin D levels because he is active.  

3-Neurosurgery
Rayden's head circumference was 49.7 cm. only growing .7 cm in four months. His shunt was still set on 2.0. All seemed fine with his shunt, thank God. The only issue was that we have noticed his left eye looking away while his right eye is looking straight ahead. It does correct itself but has been happening more frequent. Melody seemed concerned that this is what they call 'lazy eye' and it may affect his vision. She wants us to see Ophthalmology right away. 

5-Orthopaedics

Rayden weighed in at 30.3 lbs. We haven't seen Dr. Narotam since May because Rayden has been under Dr. Cuomo's care after his last surgery. She doesn't come to clinic so we saw Dr. Narotam. We really like him so it was good to see him and catch up. He was sooo impressed with how different Rayden's feet look now. Not necessarily due to the surgery but more a result from having the twister cables on for the past month. He couldn't believe how much he has benefited from them. He said his feet are no longer stiff, they go to neutral without any problem. He actually said he has never seen his feet so straight either. He seemed a little confused as to why Dr. Cuomo wants to do another surgery, but she hasn't seen him since he's had the twister cables. Of course the cables will not fix his tibia torsion, but Dr. Narotam seems to think he may not need surgery to correct that any longer!!
6-PT
Cathy has been diligently trying to get Rayden the correct walker. Although we had already ordered the big pacer walker, Cathy didn't think he needed that big thing! She brought three different walkers in the hall for Rayden to try. He started walking up and down the hallway like a champion. All the doctors stepped out to watch. Dr. Narotam actually put his face in his hands in amazement! He couldn't believe how much progress Rayden has made with the cables in only one month. Before the cables Rayden could barely stand up. His feet were turning in so badly that his legs would buckle at the knees. When he tried to take steps along the couch his feet went all over the place tripping him up. Dr. Narotam actually made the comment that Rayden should have had the twister cables a long time ago! I agree!! Cathy told us to go home and think about which walker we wanted. Michael made some alterations to the one we are borrowing from the CDSA and Rayden has been walking wonderfully in it. So we decided to get the smaller walker. Hopefully it will be here before Christmas.
-Maya
Maya has been our care coordinator since I was pregnant with Rayden. She has become like family. We love to see her every time we have appointments. Rayden actually wrapped his little arms around her neck and gave her the biggest, longest hug ever. The other doctors were jealous, haha!  

After our long day of appointments we stopped at Red Robbin to get a bite to eat before the long drive home. Rayden had not had a nap so he was exhausted! He actually fell asleep before we even ordered our drinks. I placed him in the booth beside of me and he slept during the entire meal. Precious baby.