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Botox

The hyperammonemic events that Matthew endured as a newborn damaged the area of his brain that controls his motor skills. At a year old, he still struggles to hold his head up. Even more difficult is bringing his hands to mid-line or to his mouth. For a very long time he has been receiving both physical and occupational therapy. Recently we added a speech therapist and a second occupational therapist. Over the months, I’ve seen Matthew look like he’s about to learn a new skill. I’ve seen him be quite fluid at a skill. And, I’ve seen him lose skills. All along the way, I’ve been happy, angry, and frustrated with his therapy. It wasn’t until a few months ago that I started seeing real progress in Matthew (when we added therapy from a different organization). It feels like for most of his first year he has either been at a plateau or has been losing ground. I can’t even describe the frustration that I feel when I think about that. BUT, Matthew doesn’t ever give up. Even when his therapist says that he isn’t making enough progress, that we aren’t practicing enough with him, that he’s regressing.. Matthew continues to smile and keep chugging along. He’s made tiny little steps: Sitting unassisted for 60 seconds, holding his head steady for longer, tolerating belly time longer, eating baby food by mouth. His PT, however has been dissatisfied with his forward movement. She referred us to a physiologist, hoping to have him put on a muscle relaxer. Thankfully, the physiologist didn’t think that was necessary. She suggested a Botox treatment for his arms.

Hamstring stretches

Hamstring stretches

Just over  a week ago, Matthew had 4 Botox injections down each arm. “Don’t expect any miracles” were the doctors parting words. But, miracles is what I feel like we’ve gotten. Within hours, Matthew’s arm movements were increasing in range of motion and were more fluid. He was no longer fighting us to move his arms through further range of motion. In the days since,  he’s been holding toys more easily. He’s been accepting of us showing him how to shake the toys. He’s been trying to reach for things. Nurse E says that the other day he fell asleep holding his hands together at mid-line. We’ve seen a marked decline in his ‘fencing reflex’ and an increase in his coordinated movement of his arms and his bringing his arms closer together.

Hamstring stretches

Hamstring stretches

This morning he had another OT appointment (we love this therapist). She was so excited to see his progress from last week. She had feared he was plateauing with her. Today, though, Matthew shook a toy twice, On His Own. He brought a toy to his mouth On His Own. He pushed his body up off of the floor from flat on his belly. Normally, we have to pry Matthew’s finger open to put a toy inside and when he’s frustrated or angry, he throws his body into extension (straightening his body and going completely stiff). Today, she tried ‘activating’ his muscles by gently stroking on the back of his hand, to which Matthew responded by opening his fingers and grasping a toy. When he tried to go into extension, she gently stroked his back downward and he relaxed back into his seated position.

Practicing his stretches

Practicing his stretches

Botox will last for about 3 months. We are on the upward swing of the drug taking effect and then at some point it will start to wear off. The hope is that in those three months, he will be able to strengthen his muscles enough to not need any further treatments. The physiologist may not call it a miracle treatment, but  I do. In one week we’ve seen massive improvement that has been a year in the making!

"Speech Therapy" with an Oreo. He did a fabulous job of sucking and chewing on the Oreo.

“Speech Therapy” with an Oreo. He did a fabulous job of sucking and chewing on the Oreo.

 

What therapy lessons look like for the girls

What therapy lessons look like for the girls

 

I’m so proud of him. Daily I am proud of him. He is such a little fighter. I love that he just doesn’t care what others think. He’s determined to prove everyone wrong, and in his own time.

 

 

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Practicing his Cobra Pose

Practicing his Cobra Pose

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Sisters: Part 2

image_7It’s been a while since we talked about Matthew’s sisters. And while there isn’t anything really specific to write about, I feel like it’s important to remember their role in this adventure. I have heard many times, from many different doctors, that his sisters are his best therapy. I don’t stop to think about it very often, but they truly are the best source of therapy he can get. To them, they are just playing with Matthew. They are just dancing to make him laugh, because they love when he laughs. They are just cheering him on because they love that he can almost roll over. They are overjoyed when he grabs onto their fingers simply because they love when he touches them. They are constant stimuli, constant challengers, constant cheerleaders, a constant source of love. They ask him to reach for things and offer him toys, teach him, and clap for him because that is all that they know how to do. They know that Matthew isn’t like other babies, that there is something different about him, but they just don’t care. They love Matthew. They love the Matthew with the feeding tube trailing behind him, the Matthew with a minimum of four appointments a week, the Matthew that brought us our Nurse E (and the fun and smiles that she brings to our house).image_6 They don’t mind that I ask them to watch him sometimes while I bolt from the room for something. They don’t mind that sometimes we have to cut our fun outing short because I forgot to bring Matthew’s medications with us. Okay, so they mind a little. But, they understand. And when I say “we have to go home because it’s time for Matthew’s medicine ” they give me their best sad face and say “okay Mom.” Without being asked, they entertain him in the car, making silly faces, dancing in their seats, and talking to him. They daily request to hold him. They fight over who is going to sit closest to him. They day dream about the things that they are going to do with him when he’s bigger.. roll in the grass, splash in puddles, eat pizza, chase butterflies, dig for worms, draw with the sidewalk chalk. The list grows daily.

They don’t know to entertain thoughts in which he can’t run and play or in which he can’t eat as they do.  In their innocence and deep faith, someday Matthew is going to be healed.Someday he will be whole.image_1

I love to watch them interact with him. It reminds me that our house is overflowing with joy. It’s easy to get lost thinking about all of the things that were not, that are not, and the things that shouldn’t be (like that they think playing with a baby doll means giving it Occupational Therapy), but when I watch those girls with their brother, it all fades away. It’s just two sisters loving their brother, just like every other sibling out there. I take that back. Maybe not Just like every other sibling relationship. I think I may have it better than most parents. (so far) They aren’t jealous of his needs. (so far) They aren’t angry that he’s different. (so far) They are so very proud that he is their brother. They tell everyone who will listen “This is MY baby brother. His name is Matthew. He doesn’t know how to take a bottle so he eats with this special tube. His liver is broken so he’s going to get a new one. Isn’t he cute!?” image_2

And, he is, very, very cute. Just like his sisters.

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