Friday we had Bennett’s “big appointment” with the MDA Clinic at Texas Children’s. He has check-ups here every 6 months, each time he sees multiple doctors the same day. It was such a long day, but we learned there were kids there from El Paso and even further. How lucky are we to live so close to Houston?! Here’s a quick recap.
Neurologist : She says Bennett is “so strong” and most of his weakness is staying in his lower legs/feet and hands. She was impressed with his little biceps 😂 She doesn’t think this will progress much further any time soon. ***Best news all day !!!!! *** She ordered a repeat MRI of his brain/spine due to his increased headaches. She’s erring on the side of caution, due to Bennett having Chiari. I’m so scared it has grown or progressed (not sure how to word it). She said it could be tension headaches because of where they’re located in the back of his head. MRI is schedule in April and we are crossing our fingers that Ben can do it without sedation.
Physical Medicine: Same thoughts as far as increased weakness in hands/feet. She wants Ben to get a new type of braces for his legs to help with his drop foot. We told her we’ve only used the wheelchair a few times, but she still thinks he’ll be needing a power chair sooner than later.
Pulmonologist: Ugh. Quick backstory. Months ago when Ben had pneumonia, I called to make an appointment with his pulmonologist at TCH and was told he is no longer there. Bummer, I scheduled with a different doctor at TCH. This doctor (not a part of MDA Clinic) told us that Ben being on bi-pap was a bit extreme, and that the cough assist device was probably not necessary either. Well his regular pulmonologist magically reappeared Friday and decided he was going to put a stop to Bennett’s surgery (tonsillectomy). Basically he said Bennett’s sleep apnea could have progressed from mild to moderate or severe and it’s not safe to undergo surgery. Bennett hasn’t had a sleep study in a few years, but his snoring or gasping hasn’t increased. Not to mention the cost. The ENT was okay with doing a sleep study AFTER the surgery to see how much improvement Ben has. So now, a few days before surgery .. we don’t even know if it’s going to happen. Tomorrow (Monday), Bryan and my mom will take Ben to the PASS Clinic at TCH to visit anesthesia. The anesthesiologist tomorrow will have the final say in whether or not surgery happens. I’m sure his pulmonologist is just being cautious but it’s extremely frustrating when we’ve had this scheduled for months.
That being said, Ben had a repeat lung function test. He showed a lot of improvement from his last test. However, a new part was added and showed that Bennett has airway restriction. The Dr explained it as “yes, Ben can breath fine but after using albuterol his airways show extreme improvement”. Basically, Ben has adapted himself to breathing but his lungs aren’t doing all they’re able. So now Ben will use inhaled steroids everyday, twice a day.
The folks from MDA Summer Camp were at the hospital, recruiting kids for the summer. Bennett isn’t quite old enough but was so excited when he heard that he’d be in a cabin with 10 other boys his age. Meanwhile.. I’m over here thinking “Camp??? Away from his momma for a week?”
🚁🚁🚁🚁#helicoptermom
As of now, we’re planning for surgery. We’ve got a refrigerator stocked full of pudding and ice cream.
Benny had his first baseball game last weekend. He’s been going to practice and working hard at home. He’s not the most coordinated or fastest on the team, but he has so much fun! He’s learned so much and was given the game ball. Two singles and he was tackled by the pitcher on the way to first base!
Chocolate Milk and Teslas 