How much does it cost to fix him?

I will buy anything that might make Bo “all better”. Johnson & Johnson don’t make band-aids for this type of injury, so instead, I will go out and buy everything else that might. If they don’t make it, I will “Jimmy-Rig” it myself.

Bo has had packing foam covered in cheerful and soft minky fabric to help him stay upright in his stroller and car seat when his trunk muscles weren’t strong enough. He has had burp cloths tightly rolled and wound together with blue, red, and yellow electrical tape when he couldn’t sit up without slumping over in his highchair. I have ordered wrist rattles for him to wear on his right-side extremities in an attempt to make him aware of them (only to rip them open, buy bigger, louder bells and re-sew them myself when I wasn’t satisfied that they would be loud enough for him to notice). He has battery-operated, vibrating, oromotor tools with over a dozen removable attachments in an attempt to bring sensation into his mouth. He has had medical sponges on sticks which had to have each of the five tiny little sides cut off by hand from all 200 I ordered so we could stretch his cheeks, rub them along his gum line, and run them along the side of his tongue to try to teach his tongue the reflexes he was born without. He has toys suction-cupped to the window next to him in the car in an attempt to divert his gaze to the left in order to strengthen his eyesight and neck muscles on that side. He has special spoons to increase the sensation in his mouth, a cup with three quarters of one side of it cut out so he can drink without moving his head back, a modified straw cup that is actually a honey bear with oxygen tubing inside so I can control the flow of liquid, and there is a professional electronic baby scale in his room, for when he needed to be weighed multiple times each week for the delicate balance of anti-seizure medication he was on. He has a train table that is exactly seventeen inches high so he can practice kneeling to bring sensation to his right lower extremities and every single toy that sings, rolls, lights up, or talks to him in order to motivate him to look at it, move towards it, touch it, or attempt to mimic it.

That last list changed my entire perspective on parenting, as I had previously avoided any and all toys of the sort with PJ. I tried to get her as many creativity and imagination-producing toys I could think of. Dolls, dress-up, kitchen toys, crayons, paper, play dough, puzzles, books, etc.

It’s just another thing that being a parent to a child like Bo has taught me… Standing on principle sometimes just means you’re standing still.

Today was just another day. On Monday at one of Bo’s sessions, I had conversation with his therapist about my concerns that since Bo’s stroke had hit the Language portion if his brain and he is obviously behind, he would never talk or would have great difficulty communicating in the future. She looked me straight in the eyes, smiled, and said “oh, but Bo has PLENTY of language!”. Seeing how confused I was, she asked Bo where the bubble machine that they had been playing with earlier was and he immediately looked directly at it. I was bowled over. She then took out an absolutely ancient Vtech toy that had buttons in the shape of things like a mommy, a daddy, a baby, a moon, etc. I had ever seen this toy before so I was interested in what she was planning to do with it since it seemed pretty advanced for him. She repeatedly pressed the “daddy” button and then would go on to another few buttons and repeat the process. After a few minutes, she asked him, “Where’s the daddy?”. His gaze immediately went to the correct button and I felt my eyes immediately filling up with tears.

She explained to me that while Bo may not have speech right now, and we’re not sure when — or if — he will, his cognitive ability certainly is present and has plenty of language. Machines like this may be something he needs in the future to communicate with, but he WILL be able to communicate. A mom I know whose son also had a stroke has her son use a program on the iPad that has made the world as they know it drastically different in an amazingly positive way.

This moment was one of those moments I will remember forever. It was a “Yes!”, a checkbox on the list that was now checked off, a revelation of something else he CAN do. It felt incredible, hopeful, and proud – so, so, so proud.

I searched for this thing for hours over the course of this week. All I knew was the manufacturer and that it was over 25 years old.

It should be here on Monday.

Comments

  1. says

    Jamie, congratulations on the blog—and on the wonderful writing. And on this AMAZING news. His cognition will make a huge difference in his future. HUGE. Also, that photo of him is so, so, so beautiful. I wanted to reach right through the screen and pinch his cheeks.

    About all that great stuff you’re doing: Motherhood may be the mother of invention, but mothering kids with special needs turns us into EINSTEINS!

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