I know that when Jameson was born the doctors and nurses were hesitant to release him and let us go home. And I know that they also didn’t really see a lot of babies like Jameson born so they didn’t say much to my husband and I – but they did run every test they could think of just to be sure that they were certain Jameson was in the best possible health before he was released.
This care continued when we were readmitted to Ped’s and the doc on duty wouldn’t let us leave the hospital until she had us set up with an actual appointment with the geneticist rather then let us wait for a phone call from him.
Then at his 2 week check up the nurse that saw him was also a PCM and gave me her card and said if we ever ran into issues setting up appointments to give her a call and she would take care of it. This was great because when the outside hospital called for his cranial consult I needed to use her name and number so this huge team of doctor’s could be coordinated together to see Jameson – otherwise I would have to be the one making all the calls.
This Wednesday at Jameson’s hearing exam the audiologist asked me if Jameson had been diagnosed with anything because she noticed his eyes were “bulgy”. I told her about Jameson’s history so far and that he was being tested for Pfeiffer’s and went through his apointments with the different doctor’s he has seen and needs to see. She was so sweet, she immediately picked up the phone and called across the hall (we were in EENT) to the pediatric ophthalmologist to get Jameson set up with an appointment. This was someone the geneticist had wanted Jameson to see as well.
Today, 2 days after his hearing test, we went in to see the ophthalmologist. This issue with proptosis (bulging eyes) is that during sleep the eyes may not close all the way which lets air in and cause damage to the cornea. Jameson’s eyes do in fact close all the way when he sleeps, so this hasn’t been a concern.
The luckiest thing about today though, was that this particular ophthalmologist did her fellowship with kids with Apert’s, Crouzon’s, Pfeiffer’s, and all the other craniofacial syndromes. She took one look at Jameson and said – “Yep, this is Pfeiffer’s for sure” -and she was so excited to meet him! She examined his eyes, which is hard to do because he’s so young, and then she dilated them to look inside. She said that he does have some small hemorrhages in both eyes, but that it is most likely from childbirth. We chatted for a bit about Pfeiffer’s and she said the surgery to correct the eye muscle is very simple and can be done around 2 years of age if that was something we ended up wanting, and she took some pictures (they took pictures of him down in San Antonio too) and we set up a follow up in one month to check to make sure his hemorrhages were gone.
I am just so appreciative of all the doctor’s and nurses who we have met so far. Each one has truly done everything in their power to take care of my sweet boy and make sure he was getting the best care possible. As a mother I am sure somewhere down the road I am going to have to jump through hoops to get things done with doctor’s, insurance, etc. to listen to me, but right now I can’t thank these caregivers enough for letting me do what is most important for any newborn as a parent- just loving, holding and getting know them.