(Saw that coming, didn’t you?)
Today was a big appointment. It was our first comprehensive appointment at the neoneuro clinic. Basically this is where we will monitor the boys’ development, keep an eye on their seizures, nutrition, and overall health.
Today we saw nutrition, a neonatalogist, and a neurologist. Next visit we will add in a developmental assessment, and see OT or PT as well.
Nutrition helped us come up with a plan to make sure the boys continue gaining weight well. They currently weigh 10 lb 9 oz and 8 lb 9 oz! We also came away with some additional formula suggestions to try to find solutions to combat the gas issues caused by the Keppra.
Neonatalogy thought the boys looked great. Weight gain, increased alert time, and improved eye focus / tracking were all positives. N is going to trial off of oxygen. The key will be making sure he gains weight well. If his weight gain falters, it will be blamed on his body struggling to keep his oxygen level up.
Neurology was the part of the appointment I was most interested in this time. Last night and again this morning L surprised us with what appeared to be a seizure. That was the first seizure like activity he has had since early on in his NICU days. The timing was good so that we could discuss it today. The decision was made to weight adjust their seizure medications. If L’s seizure returns, we will also consider increasing the dosage of his phenobarb. This doctor was more hesitant to say that the seizures are not damaging. Particularly if they have some that last 10+ minutes. But the plan is still to focus on treating clinical seizures with the minimal medication required.
We talked about their improved strength and muscle tone, head control, and even those celebrated rolls! She was encouraged by all of that.
Unfortunately, “encouraged” didn’t mean what I would have hoped. She was “encouraged” that these boys might be able to communicate with us somehow. She was talking about sign language and switches. And she seemed confident talking and walking are off the table.
I will continue to believe everything is on the table.
Speaking of ON the table, while she was talking about sign language and switches, N rolled again on the exam table.
For now, I will focus on the positives…the boys got a neurologist to say “encouraging”, even if we disagree about what that means. And N continues to be a show off, not only rolling again, but during an exam and in front of a doctor.
We have a developmental assessment coming up in February…so between now and then we will work very hard with the boys, hoping to help the doctors see the potential we see. The fight in their eyes. And maybe, redefine “encouraging”.
When we were waiting for the prescriptions, a security guard stopped to comment on how cute the boys were. She joked that I had my hands full with three boys, and guessed these two would eventually team up on me for lots of fun. She said “just wait until they are mobile! That’s when it will get crazy!”
Bring on the crazy, boys. Bring on the crazy.