Peaceful & Happy

Sweet Baby Shaw really 'wowwed' his audience at the Neurology and High Risk Clinic yesterday. Not only is his one tuft of hair dapper and toothy smile irresistible, he was anxious to show those docs all of his progress!

Since Shaw was last seen in December, he has mastered: rolling over, two teeth and strong verbal communication skills (including ba and da syllables). He graduated from his Apnea monitor, goes to sleep without a fight, has improved (exponentially) with his reflux (probably allowing for much of the previously stated progress), and of course the beloved Little Richter Scooch. The Neurologist, Physical Therapist and Occupational Therapist gave Shaw an 'A++' for such accomplishments!

His rapid and recent improvements in gross motor skills make it that much more difficult to swallow the MRI results.

Having spent the last year in and out of 'big' appointments, surgeries and tests, often many scary terms are thrown at us. Just as soon as they are mentioned, there is something more urgent at hand that needs addressing.

For example, during birth, a micro-preemie is under such duress the brain may bleed - a stroke, just like in adults. The good news is, a young brain is so pliable, that it can renavigate, reconstruct and redirect pathways to better function. While the bleed is extremely important, under-developed lungs or a failing heart may take precedence in order to immediately survive.

Another example would be Shaw needing a shunt for hydrocephalous to stop his brain from swelling, but at the same time hearing words like 'Colpocephaly', 'Crushed Frontal Horn (of the brain)' or 'Chiari Malformation’. Simultaneously, Shaw may have been septic (filled with sickness like meningitis) or needed a blood transfusion, due to low platelets. Those big scary possibilities (that aren’t critical at the time) are shelved, until he is stronger and the immediate concerns are addressed.

Now that Shaw is a chubby-thighed, pink cheeked, twenty pound baby boy, he is much stronger and can handle revisiting some of those frightening diagnosis, hence the reason the MRI was scheduled.

The MRI identified two additional brain abnormalities.

The first being the cerebellum. In the simplest of terms, this area of Shaw's
brain extends farther than it should (by millimeters). It isn't a classic case
of Chiari Malformation, but will be monitored closely by the Neurologists.

The second, Periventricular Leukomalcia. PVL is a disorder resulting from a brain injury, where small areas of brain tissue around the ventricles have died. Most often, PVL is seen in children with Cerebral Palsy. Unfortunately, once tissue in the brain is damaged, it dies and cannot be rejuvenated. Fortunately, as I mentioned earlier, a young brain will fight to find new paths around the dead matter to connect where possible. This is why Physical Therapy and Occupational Therapy are so critical, as it is 'training' and challenging the brain to maneuver Shaw's body in different ways.

Both abnormalities are new and unrelated to the shunt and/or hydrocephalous.

Shaw was not diagnosed with CP today, however his MRI and brain abnormalities are showing some indicators. Our Neurologist will follow Shaw for another six months. At that time, she will see where he is cognitively (which he rocked yesterday!!) and where he is with his gross motor development and will decide a diagnosis (if any) at that time.

Our favorite words from the doctor’s lips today were, "I follow Shaw, not the PVL." As always (and much like the rest of the Richter Team), we are stubborn and Shaw will ‘perform’ in his own time.

Michael and I are still processing - reading/learning all we can. While none of
this comes as a complete surprise, given all the challenges Shaw has been faced with since birth, they are new challenges that we will embrace. Our end goal has not waivered - that is to ensure Shaw’s comfort and happiness.

Shaw flirted with the doctors so much and shined so bright yesterday that he convinced the doctors he was going to crawl to Texas and back before his next visit!

All said and done, our prayers have been answered. We prayed for a peaceful and happy baby and that is exactly what we have. Baby Shaw continues to light our lives and defy odds everyday. We have no doubt that he will continue to WOW those doctors and everyone that he comes in contact with.

We are two very proud parents of Avery Shaw Richter.

(Happy Birthday, to my beloved husband, Miguel. Thank you for being there yesterday).