I honestly really tried not to have to many expectations about this appointment but it was scheduled in May and it’s been a long wait, so it was inevitable. I’ve fully wrapped my head around everything the doctor told us yesterday and I definitely had pretty crappy feelings about certain things, but I’ve worked through them and I’m starting to regain my optimism for Caleb’s future.
This doctor is a highly respected, well-known developmental pediatrician at the Kennedy Krieger Institute (KKI) in Baltimore. jAfter waking up the boys, rushing a quick breakfast and an hour long drive, we finally arrived for the appointment. Of course, the boys were refusing to nap since there was so much going on (new places, people, sights and sounds), and they fussed and/or cried for most of the appointment. Also, the doctor asked if we would mind if a medical student and another young student sat in on our appointment. Sure! Why not! So you can picture Shane and I, the doctor, the med student and the younger student along with our huge double stroller and two crying babies in an exam room trying to have a serious discussion about Caleb’s cerebral palsy. *Sigh* I’m tired just thinking about it.
The doctor didn’t really tell us anything that we didn’t know before and but I wasn’t really looking to learn anything new. He confirmed (once again) that Caleb has a form of CP called spastic diplegia and that he has a moderate injury to his brain called periventricular leukomalacia. We still don’t know what caused it. We still don’t know when the injury occured but he didn’t rule out that this might have been a post-natal injury. That was surprising to me. He presented us with the option of meeting with a different pediatric neurologist in order to do additional testing on Caleb to attempt to figure out what may have caused his CP. The results of these tests won’t change his diagnosis or treatment so we wonder if it’s really worth putting Caleb through it (blood & urine sample) but it may help the doctors paint a better picture of CP for future patients. It could also help us to understand if there’s any likelihood of future children of ours (maybe, someday) developing cerebral palsy as well.
We were also asked to research a medicine called Baclofen which is commonly used to treat people with cerebral palsy. Baclofen is a muscle relaxant which would treat the stiffness in Caleb’s musles. As with any medications there are some pretty scary side effects that we need to take into consideration. We think Caleb is responding really well to therapy without it, but maybe the medication would allow him to make even greater strides, so it’s something Shane and I will have to definitely have to research in greater detail. A Baclofen pump can also be surgically implanted so the correct amount is constantly being given each day. Again, something to keep in mind when Caleb’s much older. Botox injections are also common in kids with CP. It serves as a muscle relaxant that lasts 3-4 months after administration.
The doctor agrees to continue with physical therapy and also set us up with the physical therapists at KKI. They will do a baseline exam on Caleb to determine if he would potentially benefit from aquatic therapy in the future. He was quick to explain, however, that there isn’t a 1:1 correlation between amount of therapy sessions and positive results. Like the difference between 2 therapy sessions a week and 6/week isn’t necessarily significant and you have to be sure not to burn yourself out trying to get your child every form of therapy under the sun. That really struck me, since I’ve been convinced from the start that MORE therapy is BETTER and I have to advocate for Caleb to get MORE MORE MORE therapy! So I was really surprised by that statement. I think PT once a week is great and if he qualifies for occupational therapy through our county’s early intervention program then I think he’d benefit from that as well.
One thing we’ve heard over and over as it relates to CP is that it’s very much a “wait and see” game. The MRI shows that the damage to Caleb’s brain is moderate, but the doctors have always been quick to say that you “treat the child not the MRI” meaning a moderate injury might translate to really mild CP or more severe CP, you just never know. I’ve been optimistic that Caleb’s condition is on the milder side and perhaps will only affect him physically and not cognitively. The doctor was quick to tell me like it is… it’s a reasonable likelihood that Caleb will be cognitively delayed. This is based on the number of patients he’s seen over the years with the same type and severity of brain injury. I’m still holding out hope that Caleb proves him wrong. I appreciated his honesty and he was genuinely impressed with Caleb’s abilities thus far. I told my mom how frustrating that in spite of hearing dozens of positive comments about Caleb, the one negative assessment of his cognitive abilities weighed heavy on my shoulders for the rest of the day.
I left the appointment much more informed about the types of treatments that are out there for us to consider. I felt reassured that we’re doing the right things to help Caleb both physically and mentally. I was stressing about schools and whether or not Caleb and Wyatt would have to be separated someday but the doctor quickly lectured me to stop worrying about all the “what ifs” that are constantly swimming around in my brain. It really doesn’t do any good to stress about circumstances in the future. The doctor said we’ll have a good idea of Caleb’s CP when he turns two, a better picture when he turns 5 and by 8 years old Caleb’s abilities will probably remain the same for the rest of his life.
I know that the best treatment for Caleb is whatever we decide, as a family, is best. But since there’s so many options out there I’m just terrified of making the wrong choices. The stakes are so incredibly high.