I'll try to remember everything that went on today and in order so hopefully I won't forget anything. I got to Lillian's appointment, at the Spina Bifida clinic, at 1pm. When they took us in, the nurse checked her first (weight, height, etc.) and asked some questions and such. Then the Physical Therapist and Occupational Therapist came in to see her. They put a mat on the floor so we could have her moving around and such to see how she was doing physically. They checked her sitting, reflexes, that she moved/flexed her toes, lifted her head off the ground when on her stomach, grabbed for things, visually tracked, put pressure on legs when standing, if she could keep her balance/keep herself from falling over when they pushed her a little while in a sitting position. She wouldn't roll over though or rotate on her stomach. She wasn't too happy about most of it. For one of the happiest babies there is, I think she's already figuring out that she doesn't like Dr.s offices. She didn't smile for either of them, and cried a bit; especially when they were trying to push her off balance and on her stomach. But she's right where she's supposed to be physically. She has no delays. Which we already figured, but it's nice to hear. Then I met Dr. Dosa; she's really nice. She's one of the first Dr.s to really just sit down and answer questions and really explain stuff. She asked about family history, pregnancy, etc. She mentioned that, if we were to try and get pregnant again, I'd need to start on 10x the recommended daily allowance of folic acid for at least a month to 3 months before trying to get pregnant and continue up through at least the first month of the pregnancy to help reduce the chance of another baby with Spina Bifida. (Also, and this I'm just getting from the Spina Bifida magazine I was reading before going into the office, Lillian would have to do the same before trying to get pregnant. Anyone who's had a child with Spina Bifida, or someone who has it themselves are supposed to take the 10x the recommend amount. And that includes if the guy has Spina Bifida; the wife should still take the 10x the amount before trying to get pregnant to help lower the risk.) Anyway, back to Lillian. Dr. Dosa said that, again, nothing is connected to the Spinal Column. If she had surgery, it would be cosmetic to remove the fat somewhere down the line. She actually showed me the MRI, since I asked her how the bones were different then they were supposed to be, although, she couldn't get the CT scan for some reason, which would have shown the bones better. But the MRI showed, clearly, how nothing was connected to the spine. The problem is that the bones are a little deformed, so she wanted me to take her to see an Orthopedic surgeon. She said that since nothing is connected to the Spinal Column, we wouldn't have to worry about most of what usually goes along with Spina Bifida. She shouldn't have any problem with muscle control or incontinence. But she did order an ultrasound for her kidneys just to make sure, but she's expecting it to come back completely normal. She also checked Lillian's rectum to make sure that, when touched, it had the correct reflex, which shows she has control. And she was fine. The appointment lasted 2 hrs. So, I'll take her to Rome Hospital tomorrow to have the ultrasound done. The only thing she said that might be an issue, is that people with Spina Bifida are at a greater risk for Scoliosis. So, she called over to the Orthopedic surgeon's office to see if they had an appointment available. So after I left her office, I went to the Orthopedic. office down the road. When I got there, they weighed and measured her again, and then she saw the surgeon. She went over the MRI results and said that she looked good. But she couldn't get the CT either; she only had a report of the CT. But she asked more questions, checked her out, and agrees that she looks great. She also agreed that it didn't look like there would be any need for surgery. Even though the vertebrae isn't fully connected, it's such a small break, that there's really nothing to worry about. I asked her about the Scoliosis thing, and she said, with how she looks now, there's no reason to believe that she would have it down the road; her risk level wouldn't be much higher then average. She's as close to 'normal' as she could get with this. So by the time I finished the appointments, we'd been ther for over 3 hrs. So it was a long day.
But, Lillian will still be monitored by ALL of the Dr.s. So now, I have to call the Neurosurgeon and see when her next appointment is supposed to be, since the other Dr.s are willing to work with me and try to get all of my appointments on the same day to help condense my trips to Syracuse, but that will make for one long day. If I can't get them on the same day, I should at least be able to get the Spina Bifida clinic and Orthopedic appointments on the same day, because I know they see patients on the same days. So that will help a little. So in 6 months, give or take, she'll see the Neurosurgeon again and do another MRI, then she'll go to the Spina Bifida clinic and probably be checked by the Physical therapist and such, and then to the Orthopedic Surgeon where she will probably have an x-ray taken of her hips and such.
So, still more appointments, but I'm just happy to know that she's OK. In the blessings Todd gave her, he said that she'd be OK, but it's still nice to get confirmation.
