Aren't they all about little B?? LOL. I have had some of you asked for a Brayden update lately so here it goes...
Eating
B is eating pureed baby foods, that I make, 1-2 times a day with his special spoons we get through the speech therapist. He likes the vibrating spoon with the textured tip the best. (Z Vibe) He gets 4 bottles a day of Similac Formula 6-7 oz each. He takes his meds with a little bit of Vanilla Pediasure. He is still pretty slow with eating but he makes improvements each week. A bottle usually takes 30 minutes and we like it to be quiet or low noise to help him not get distracted. If we are out and about we usually find a quiet room to feed him in. He is on level 2 Born free nipple. He will occasionally get water with a splash of juice, he's not a big fan so we are slowly trying to get more clear fluids in.
Medications
B takes two seizure meds. Phenobarbital (since one week old) and Keppra. He gets blood drawn every 2.5 pounds he gains to make sure the drug levels are at a therapeutic dose. His neurologist wants to discontinue both next year and put him on a different med for seizures. Phenobar has been shown to make older kids fussy so we want to get him off. Eventually the goal is to be off all meds but it's a slow process. Even though he hasn't had a seizure since Feb 2011 we can't just take him off a medicine he has been on since one week old, it could have the adverse withdrawal effect. He takes his meds really well twice a day but I'm anxious to get him off them.
Sleep
B takes a cat nap in between each bottle, so three short naps a day. Usually 20-50 minutes. He naps in his crib or on a lap, he's a major cuddle bug! He goes to bed around 10 till around 8. He sleeps in his pack and play in our room at night. We will be making the night time sleep switch to the crib soon, although I love being a co-sleeper. I have converted to being a huge fan!
Development
B is very behind developmentally but his therapist are doing great things with him. He sees his physical, occupational, and vision therapist once a week and his speech therapist twice a month. He loves his ladies and they adore him, he's quite the charmer!
He is getting stronger each day and slowly making improvements. He is almost sitting up. He can go 10-20 seconds on his own. He has most of his head control. He gets tired and needs to rest his head. He has almost figured out how to roll from back to front. He still hates being on his tummy but has gotten so strong from it. His right hand is always in his mouth. If you give him a toy he will hold it and eat it. His therapist are confident he will walk with assistance, it will be at a much later date. He may need a motor chair before he walks to help get around as he gets heavier.
Therapy Tools
Besides the spoons he has a bench we use to help him sit at. As he gets older we will use it to sit on and help him get a good 90* angle when sitting. We use an exercise ball to help him get movement and strength training. We have a stander and chair on order. These are special equipment to help give him support in a standing and sitting position.
Here is B in the sample stander they brought us to try, his will be blue. He likes it and it's great to get him in an upright position.
Talking
B is not talking. He says 'hi' and makes tons of noises. His speech therapist is pleased with how he plays with sound, noise, and tone. He doesn't laugh per say but he makes cute little noises when he smiles, which is all the time. Yes, he really is that smiley!
Smarty Pants
I think the belief with special needs or brain damage is that the child is dumb. I know I had that belief when I was younger and I'd see a child that was different. B is very smart. He hears very well and is extremely perceptive. He responds to verbal cues and us or his therapists asking him to do certain things with his body. He understands his world around him he just responds and does things differently. He does not cry but he has his ways of letting us know he's unhappy, happy, just so so. We have mastered his cues. He has a bit of a feisty attitude. We have started calling him drama. He likes to be fussy and if we say 'hey Mr drama are you being a faker' he'll stop being fussy and flash you a big smile. Needless to say his personality is huge!
Vision
His vision therapist is amazing!! B tracks better and makes much better eye contact. It has improved so much and we only expect it to get better. When he gets his stander and chair his vision we expect to grow more. Laying down so much doesn't allow your vision to develop fully. Being in a more upright position you have better range and optimal position to see better and interpret what your seeing better.
That about covers it. If you have a specific question feel free to ask. I'm an open book pretty much. And bottom line B may be different, he may have special needs, but he is such an amazing little guy. He stole my heart and he continues to steel hearts along the way. Life with him comes with challenges and bad days but overall the joy makes up for a bad day and having him makes me a better person. We learn as we go and B takes us on his own journey...smiling the whole way...or sleeping LOL.
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