When we brought Braxton home from the hospital in February it was in almost all ways like we were bringing home a newborn. We had reset his brain with the cocktail of epilepsy medications and had his body metabolizing in a whole new way with the ketogenic diet. Our once hypertonic boy was then remade into a ragdoll. He was nine months old but once again fully dependent on us. He needed near continuous tube feeding, oxygen at night, someone to move and stretch his body, and help holding his head up.
Amazingly, over the past few months we have seen impressive development. After one month home, he started to act like a one month old. He started to learn how to sleep for longer periods in the night, and the outside world started to catch his interest again, including peeks with his eyes. With uncoordinated movements he started to work to bring is fists to his mouth. He liked just to cuddle and listen to our voices and music.
At Braxton’s one year birthday, he was instead very much like a three month old. Although this would worry many parents, instead I grew amazed that he was following a developmental path that was quite typical, although very delayed. He was full of smiles, and ever more aware and responsive to the world around him. He recognized voices. Playtime was more fun, as he started moving toys around with sweeping motions of his arms and kick with his legs. He could guide and hold his facecloth to his mouth to chew when lying on his side. He was sleeping through the night and leaning to self sooth with his clothes to chew. He gained motivation to try to sit up, although he still needed head support.
Amazingly, over the past few months we have seen impressive development. After one month home, he started to act like a one month old. He started to learn how to sleep for longer periods in the night, and the outside world started to catch his interest again, including peeks with his eyes. With uncoordinated movements he started to work to bring is fists to his mouth. He liked just to cuddle and listen to our voices and music.
At Braxton’s one year birthday, he was instead very much like a three month old. Although this would worry many parents, instead I grew amazed that he was following a developmental path that was quite typical, although very delayed. He was full of smiles, and ever more aware and responsive to the world around him. He recognized voices. Playtime was more fun, as he started moving toys around with sweeping motions of his arms and kick with his legs. He could guide and hold his facecloth to his mouth to chew when lying on his side. He was sleeping through the night and leaning to self sooth with his clothes to chew. He gained motivation to try to sit up, although he still needed head support.
Now, following this line of thought, Braxton will be five months old developmentally. In line with this, he babbles, coos, and smiles. He can do quarter rolls, from his side to his stomach or back. He is more comfortable in seated position and is working hard at sitting independently. Now that he can swim daily he is using his muscles much more and is gaining coordination and strength. He uses a raking grasp to pull objects closer, holds toys, and throws them onto the floor. He is noticing more colours and is responsive to our verbal cues. Braxton can amuse himself in a playgym or surrounded by toys that make noise. He has an established routine of bedtime, naptime, and feeds. And the biggest new development…he is starting on oral foods. Braxton has a FEES test where a camera watched him swallow, and it was determined he can safely eat purees! We can introduce tastes and textures, just like you would with a five month old.
I find this new trajectory very encouraging. We still have speed bumps to overcome, specifically with visual impairment and dandywalker syndrome affecting his motor skills. However things are moving forward, not regressing. Braxton is happy, playful and inquisitive. He is my daily struggle, but also my pride and joy!
I find this new trajectory very encouraging. We still have speed bumps to overcome, specifically with visual impairment and dandywalker syndrome affecting his motor skills. However things are moving forward, not regressing. Braxton is happy, playful and inquisitive. He is my daily struggle, but also my pride and joy!