Once again I got up at 4:30 AM, got everything in the car, and picked up a soundly sleeping Manny (guaranteed to sleep through the night if he has an MRI appointment, and no other time), and put him in the car with his pajamas and a sippy of juice. Check in and waiting went well. Only the receptionist decided to bring up last month's visit. I didn't even respond to her, especially since she had just been rude to myself and a terrified looking couple with a 22 month old, also diagnosed with NF1, here for her first MRI.
Manny showed his propensity to tear out an IV line with his teeth once, then, after another was positioned and I was left to hold him down while he screamed hysterically, the nurse showed up and sheepishly told me that the wait would be anouother 45 minutes or so. Ugh. So.. thank the universe for babywearing and my Kinderpack because I scissored Manny between my legs long enough to hook up the carrier in the front carry, put him in, and that way not only could he not reach his IV with his hand, he also couldn't reach it with his teeth as long as I kept my arms in a "hug" position. About 1 minute of that and he was fast asleep. Whew. Once we were called in the doctor and nurses insisted that I put Manny down instead of sedating him while he was still in the carrier, like I suggested. So, he ripped out another line with his teeth, and once yet another IV line was put into his arm, he was finally sedated.
I had a great nap and he was brought back to me, all corpse-like and weird. He woke up pretty well and we went to lunch, then back to Dr. Aguilera's office (the hematologist/oncologist).
Great news! The tumors have not changed one single iota. They have not grown or changed, nor have any more appeared. She wants him back for another MRI in six months (instead of the four she'd suggested before). Hopefully, if that one is the same, we can go to MRIs ever year, instead of so often. This is the best news that we could have hoped for.
Next she sent me off to audiology to see if Manny would cooperate with an audiogram. We were unable to coordinate the hearing exam with the MRI this time, as Manny wouldnt' be able to be sedated long enough. The audiologist did a few tests that we couldn't really complete, as Manny was tired, but she did say that Manny has quite a bit of negative pressure in his ears, possibly due to congestion from a cold, but also possibly due to fluid buildup behind his eardrums. Manny often complains of ear pain and acts like he has an ear infection, though no infection is every found to be present. Its possible that he has fluid in his ears that could be causing an issue with his hearing, hence the speech delay. After speaking to the audiologist, we feel like this is an avenue that we definitely need to investigate.
I made it back home around 5:30. I'm tired but happy with today's appointment. I'm off to try to relax for a while.
