Super Blake

Super Blake’s origin story, from the perspective of Super Parent Devan:

“Super Blake is truly our little super boy! Throughout the pregnancy, we were never told that there could be anything wrong; we thought we were going to have another “normal” beautiful baby boy. In fact, his delivery was actually super empowering for me. He came out crying, and everything appeared to be “normal”. I had gotten the birth I had always dreamed of. 

Then, at Super Blake’s newborn pediatrician visit, the doctor told us his head circumference was in the third percentile. She said not to be concerned because he still had some “molding” to do. But by the time Super Blake was 2 weeks old, Mom and Dad had concerns. Blake seemed to be “tight” and tense. His fists were always clenched, his muscles in his arms were really tight, and he also presented with a higher-pitched cry. Mom and Dad are both pediatric nurses and were very in tune with him and aware of these things that we didn’t find “normal.” We started seeing a private OT and a chiropractor when he was 5 weeks old to see if we could get some help to see what was going on with our boy. Because Blake was smiling, cooing, and rolling from belly to back appropriately, it was hard to convince providers that something more was going on with him.

Around the time he was 4 months of age, I had contacted our local Help me Grow through our county for an evaluation with their PT and OT to try and get Blake as much help as we could and to have other health care professionals see and look at our concerns. We also continued to see a private OT. At Blake’s 4 month appointment, he was officially diagnosed with Microcephaly and his head percentile only in the 1 percent. This was very concerning to Mom and Dad because big brother had a head circumference in the 75-80 percent. At this appointment, Blake was still not opening his hands and grabbing for toys; he remained very tight and stiff throughout. We finally got the neurology referral we had been waiting for. 

Neurology agreed with our findings, and we scheduled him for a brain MRI with sedation. The day of the MRI was nerve-racking since Mom and Dad are both nurses at the Children’s hospital all of his care is through, and we are not used to being on the other side of things. His actual MRI procedure went very well! But then came the hard part: waiting. About 36 hours later, we had received his results. Blake had suffered a bilateral stroke in utero, his left side being more affected than his right. He also had developed cystic encephalomalacia in the “dead” areas, or white matter areas, of his brain. At this time, we didn’t know what this meant for our little guy. All we knew was to love him and provide the best care possible. We also got him started in therapies with the hospital and Help Me Grow right away. 

Because his stroke was bilateral this made his situation a little more rare, and we did have to see hematology and cardiology to make sure we weren’t missing something else going on. When Super Blake was 8 months old, we saw the rehab medicine team who officially diagnosed him with spastic quadriplegic Cerebral Palsy. He also had nystagmus and amblyopia of his eyes (primarily his left eye, which would need to be patched four hours a day to strengthen it) and we got a referral for Ophthalmology. He started PT and OT.

Blake just persevered through everything. He has always been able to just light up a room with his smile! He has the best laugh in the world and has been such a blessing. Around 18 months, we added speech therapy with everything else we were already doing. Also around this time, he started taking steps in a gait trainer. He is very movement-motivated and just loves to be in his stander or gait trainer and playing along big brother, Brantlee. Now, at almost 2.5 years, he continues to work with multiple therapies every week. We swim privately every week. We do lots of work at home to just keep him thriving and moving to the best of his ability. He is starting to get some movement in his right arm, and he is taking good purposeful steps in his gait trainer. He is also babbling more and has said a few words! We also got the great news that we no longer have to patch his right eye! He has had great improvement with his eye muscles and movement. He does still have CVI and astigmatism, and that will affect how he sees things, but we’re all about the small victories! 

He is such an inspiration. Super Blake just shines wherever he is. His smile keeps us going. We still don’t know what the future holds for our little hero, but we do know we are going to continue to love, support and provide everything we can for him to have the most success in life. We are truly blessed.”

Amazing, Super Blake! Thank you to Super Parent Devan and Super Blake for sharing their story with us!

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