We've been settling into "normal" here, whatever that means. Actually with the double twos (a 2 year old and a 2 month old) it means we've been doing a lot of cleaning of little bums and big spills, randomly changing our sleep patterns and daydreaming about what it might be like to eat a whole meal without interruption. We've been rescuing the cat from little hands and little hands from all the many risks they like to take, kissing bumps and working on the perfect recipe for "coffee milk". We've also been having the time of our lives. Yes, its exhausting. It is also hysterically funny, breathtakingly touching and the best kind of crazy.
With all that going on it is easy to think that Miss Zelie's diagnosis is a thing of the past and we are "done" with the need for concern around it. That just isn't so. Her condition is as much a part of her as her wacky little dark curls. She is certainly suffering no ill effects from it just now, but there is much to watch for as she grows. Nothing to be alarmed about, but much to monitor. So...
Last week we made a trip to Jacksonville to meet with a more local Neurosurgeon. He and our surgeon from Boston have corresponded about our gal and will continue to do so. He was very pleased with Zelie overall. Her head is doing very nicely. And, though it measures in the 95+ percentile, so does the rest of her! (The pediatrician's PA pronounced her the size of a 4 month old!) Happily that means everything is charmingly proportionate with everything else. This is a very good thing.
We left that appointment with a date to return for our first clinic visit and a referral to pediatric ophthalmology. Clinic is just a nice way for us to be able to see all the specialties we need to follow up with regularly at one time and place. We don't yet know what sort of frequency will suit her needs best, but we are looking forward to our visit, which will be in early May. Ophthalmology is just one more area where we need to get an initial check and baseline. She's been ever so slightly slow and inconsistent in her visual tracking. The trouble with hydrocephalus is that it puts pressure on all areas of the brain. While her's is under control now, the initial pressure could have had some impact on her optic nerve resulting in these delays. It could just as easily be the "all babies are different" factor, but we want to check. As with all interventions, earlier is better.
Speaking of early intervention, for those who are curious about "what else", we currently have weekly visits with PT and bi-weekly visits with acupuncture. PT is largely preventative maintenance at this point. We work to ensure that she's stretching all the muscles and joints that tend to be problematic for this diagnosis in general. We do some intense tummy time! And it is already evident that anger makes our girl work harder and stronger. Acupuncture, for you non-hippie types, is addressing the healing of the deep tissue in her back and her overall continued well being. The results there have been nothing short of astonishing.
We also took both babies to see the pediatrician last week. Regular checkups all around! Joseph was not a fan of being denied his pants while being inspected from head to toe by some strange woman with cold hands. Zelie couldn't possibly have cared less. Both kiddos were declared healthy and adorable.
This week is set to be a bit less eventful. We do have a very exciting play date planned with another sweet baby who shares our diagnosis. We plan to make good use of the park nearby, enjoy the sunshine and our new friends.
Here's hoping you have equally wonderful plans for your week too. Happy Monday!
