Cerebral Palsy

Alexander celebrated his half-year birthday last week.  It's hard to believe that it has been that long since he graced the world with his smiley little face and easy going attitude.  He really is a happy baby and is so easy, so to speak.  He sleeps well, eats fairly well and just laughs and plays with us and all of his toys all day.  Daycare is much better than I could have imagined and I give a lot of credit to Ashley for the care she gives him and the comfort level I instantly had with her.  She just loves the babies she cares for and I have a lot of respect for her.

There is something going on with Alexander though and after several months of hoping it will just work itself out or not exist, it does and it's time to discuss it.  Alexander has been working with Early Intervention Services since he was two weeks old.  It was recommended just because of his size and the birth history.  The first visits went great and we thought he was progressing just fine.  There was an issue with tightness in his left side which has caused a little unevenness in his head, but we'll get that corrected easily with a helmet.  After he worked through that, I thought he would be right back on track.  He works so hard during his sessions with therapists and gives it his best for every appointment.  We have saturated him with occupational therapy and physical therapy, both private and through services provided, and of course Seth and I work with him non-stop at home, but there's still delay.  There is gross motor delay but specifically, there is more delay on his right side.  There is enough to suggest that Alexander may have cerebral palsy.  It is likely mild, but it is there.  We are patiently waiting (9 weeks of waiting) for an appointment at Mayo with a pediatric neurologist to confirm, or deny.  His right hand cannot grasp like his left and he cannot bear weight on his right side like he does on his left.  At this point, he is not rolling over from belly to back, among other delays.

After massive amounts of research and days of crying and crying and crying, I felt ready to face it.  I was hopeful that we would have had an appointment with specialist by now, but either way, I know that he will always have to work harder to to have strength and typical movement on his right side.  I don't know what caused this, other than the lack of oxygen at birth caused by the wrapping of the cord and lack of a doctor being present for his birth, but that's not the focus at this point.  I want him to be given as much support and opportunity as possible in his early little life.

The idea that broke me when I first realized what was happening was the idea that Alexander could be more special needs than Aubrey.  Now that I have processed everything, I don't think that is actually the case, but my heart still breaks for him knowing the challenges that likely lie ahead.  It is difficult to watch him playing or in therapy but he has all of the determination in the world, but just can't accomplish some of the tasks.  You can see that the connection has been made in his mind, but his body just can't do it.  He definitely does not lack the drive though.  He is not easily discouraged and has so much willpower, even at 6 months old.  He will continue at daycare, unless his needs become significant enough that they cannot accommodate.

Seth and I still make plans for Alexander's athletic future as if nothing is standing in his way.  We know that it will take extra support on our side and a heck of a lot of work on his, but we will anticipate that he will enter into hockey practice at age 3.  Aubrey will be in the stands cheering him on and a special little boy with have a special little girl to gain strength and encouragement from.     

Update 7-8-18

After many weeks of waiting, Alexander has appointments scheduled at Mayo the last week of this month and the first week of August.  He will have an MRI and see a pediatric neurologist, along with a host of other specialist.  His appointments are spread out over a week, so Aubrey will be going with us.  My dad, Marsha and John Michael will meet up with us, and they will be able to help with Aubrey while Seth and I are with Alexander.  Seth was luckily able to utilize paternity leave so that he can make the trip with us. Alexander is making progress and is continuing to work with his therapist, but he is still delayed and showing signs of possible CP.  He is also being fitted for a helmet this week.  His little head is still protruding on the right side.  Hopefully he is only in the helmet for around 4 months and ends up with a little round noggin.  He has a busy few weeks ahead but hopefully have answers to help us make the best decisions for him.