Craniofacial Appointment

We had follow-up appointments with the cranio-facial pediatrician as well as the cranio-facial plastic surgeon today. We started out the appointment with a fellow, she's a developmental pediatrician. This is an extra doctor we didn't schedule an appointment with. She took a fairly detailed medical history and spent a fair amount of time with us. But after answering all her questions I realized that that this was for her benefit and learning not ours. Her big tip was to suggest maybe we get Ainsley a stander. Which we had already tried 6 months earlier. Our physical therapist think she doesn't need one and I trust her completely. It occurred to me that perhaps it is because Ainsley is so medically complex that we always "get to " see extra doctors before we see the actual doctor we have the appointment with. Perhaps it is just how it works at a teaching hospital and every patient goes through this? But I also can't help but wonder if this is why they are always running late and why today the appointments take a total of 2 1/2 hours. Anyway...

So the cranio-ped can see how well she's doing and the numbers speak for themselves. She's 27 months old and 29lb and 37" tall. A massive weight gain since the Fundoplication. It's amazing what can happen when you can keep your food down. She had reviewed the notes from our last ENT appointment and said that since things are going so well with the PMV that the next step will be capping. Capping is when the trach is covered with a cap which forces the patient to breath through the nose and mouth instead of the trach. Sometimes capping can go very well right away and other times it can be more of a struggle to get used to and capping is done for increasing amounts of time depending on tolerance. Our otolaryngologist moved and we are going to see someone new on the 23rd. Thankfully he's very experienced so I feel okay about the change. In light of the fact that Ainsley's airway had opened up some only 3 weeks post Nissen we are hoping that we will see some good things at this appointment and maybe even come away with a cap. It's up to the otolaryngologist. Please be crossing your fingers for a good appointment for her.

I was most excited to meet with the cranio-facial plastic surgeon. He is really fabulous! I wanted to discuss the frontalis sling surgery to correct her ptosis. The otolaryngoloist wasn't sure if there is enough eyebrow bone to anchor the muscle to. I found out the surgery can be done to a prosthetic, in case there isn't enough bone, which is a relief. I've been very worried that we will have to wait until she gets eyebrow prosthetics at age 8. Too long to wait in my opinion. I really want to see her eyes again. He agreed. And gave me the name of another surgeon who he works with a lot on complex cases like Ainsley. So we'll be scheduling an appointment for a second opinion about how to proceed with her eye surgery(s). Ainsley has two small soft spots where bone did not fill in from the reconstruction. We laughed at how convenient that was of her because he could feel her brain and tell that it is not under pressure, a sign that her skull has not fixed since her cranial surgeries. Those soft spots may need to be filled in later on if they don't fill in on their own at about 9-10 yrs of age. He also said that her cheek bones are in line with the orbital rims and that indicates that her mid-face has been able to keep up growth with the forehead expansion. So this means that, so far, there is no need for a mid-face surgery. Although she does still have a bit of an under bite. This may be fixable with orthodontics or may require an upper jaw surgery. Only time will tell. I'm still hoping she'll just outgrow it. She has beautiful teeth and for now it's not a problem. He will keep monitoring Ainsley every year to see how she is doing or sooner if anything comes up.

Last we saw the dietitian. We've made a believer of her with our home-made blended formula. She was thrilled and said it made her day to have one of her kids growing so well.