Therapy

Because of Brandon’s stroke and loss of function on his left side we do a lot of therapy with him through our local early intervention program , Kids on the Move as well as the Utah School for the Deaf & the Blind (because of his myopia). So we have a physical therapist that comes to our home twice each month and an occupational therapist that comes twice each month, a developmental specialist that comes once a month and a vision specialist that comes twice a month. In addition to these 7 in-home visits each month we also go to a weekly class – “Motor Class” with other kids working on their gross motor skills (crawling, walking, etc.).

So when you have a child whose body doesn’t work like they want it to, adaptations are the name of the game. We started learning that almost immediately after they were born. We’ve had to learn to adapt and we’ve had to learn to adapt things around us to work for the babies, especially Brandon. We have also been introduced to the world of adaptive equipment, which is equipment that helps him get into the right position to sit, stand and start to move around. The first thing we got was a corner chair for him support and helps him sit up straight (he doesn’t need it any more). We have a creepster crawler which suspends him and carries his torso weight so he can practice the crawling motion with his arms and legs. He loves this but mostly he uses his right arm and goes around and around in circles, but thoroughly enjoys it. It is kind of funny because the therapists say his the first kid ever to even like it, much less love it the way he did especially before he was crawling around better on his own. A few weeks ago we got the the pony walker. It is like riding a very skinny pony with no legs. It gives a ton of support and he can’t fall down out of a standing position. Our most recent addition is the Gait Trainer. He loves it too. Right now he loves being upright and on the move so all of this equipment he just loves.. He wants to be walking like Katelyn, but he is getting really good at pulling up to objects. We let him practice this on the stairs. This has always seemed so funny to me. What good mother teaches their child to play on the stairs? Well I do. It is great for him to learn that process. But the other night at a friend’s house we paid the price when he tumbled all the way down a flight of stairs. We also use couch cushions on the floor and now he is really happy if you take a cushion off the couch so he can pull up to the couch. We have had to learn to be very creative and resourceful to solve problems and give him the opportunities he needs to learn what he needs to learn. The therapists and other providers have been so helpful in this.

He is such a smart boy though and you can just see him constantly thinking of how to make it work. He is very determined and motivated to figure things out. We are especially grateful for this quality in Brandon. We know it is what will make him successful in mastering these skills. So many children with disabilities don’t have this motivation or determination to do certain things.

He has made so much progress in the last month and a half. He is pulling to stand, army crawling, going into all fours and rocking and getting out of sitting without throwing himself back and hitting his head on the floor. He is an amazing and happy little boy. We are so grateful to have him in our family. He is an almost constant source of joy.

This is his corner chair. There were many pictures of him using it on the old blog.

This is his physical therapist, Besty getting him set up in the creepster crawler for the first time.

Here he is in the pony walker.

And our latest.... the Gait Trainer. This is basically a reverse walker with a harness

Brandon in motor class playing with Mark (a physical therapist).

Brandon playing with pudding on a glass wall. This was the "sensory extravaganza" day at class.

This is him with his occupational theapist, Mark.

This is him with Terry. She works with him on everything as it relates to his vision. Who knew there was such a job? She is really good.

Our First Missing Tooth

I have been noticing a larger-than-I-remembered gap between two of Blake's teeth but just chalked it up to how completely unobservant I must be. But Monday morning I decided to have a closer look. I asked him if he maybe had a loose tooth and he said no, but it was actually quite loose. He was sooo excited. He has a few friends who are loosing teeth, but he was the first one at our house with a loose tooth. This morning he came in to me at about 7 and told me it was really loose and it really was. I asked him if he could pull it out and he said no, but then he laid down and must have gotten it because he started freaking out a bit becuase it had gone flying from him hand. But we recovered the tiny little tooth and he is so proud. Here is a picture of the toothless wonder himself!

Katelyn Update

Katelyn is quite a good walker. One day a month or so ago she decided she wasn’t scared to walk without support. She started taking steps in the morning and by evening was doing pretty good. She walks great now and the really good news is that Amy found some shoes to fit her. It wasn’t easy because she has such tiny feet. Every time we are in public and we put her down and let her walk it surprises everyone.

Her biggest challenge is that she is really small. She is even smaller than Brandon. She didn’t gain anything (even lost a little) on her last weigh in at the doctors. She is even way too small for the premie adjusted chart. We tried to step it up and make sure we are adding everything we can to her food. The pediatrician has run all the test he can and we now have an appointment to see and endocrinologist.

Katleyn still loves to dress up and she will put on just about any accessory or piece of clothing she finds.

She loves the phone! Any phone as long as it is real - she can't be fooled.

Are these the cutest little crazy curls?

A glimpse of how whispy her hair is right now.

Brandon Update

It seems like a long time since we have given a good update for Brandon or Katelyn…

Things are going great for Brandon. We continue to see physical therapists but Brandon is making GREAT progress. It’s not really because of anything we do but it’s mostly because he so incredibly determined. This determines gives us great hope. At the same time it can be really hard on everyone when he gets frustrated. There are times when he just wants to stand. He screams (and he finds an annoying pitch) when we put him on the ground and he screams when we hold him. However, is really happy to be standing. His face lights up. The problem is that he doesn’t have good balance yet and he can’t hold himself up for long, even when standing next to the couch or some other support. He needs one of us to hold him up or at least be ready to catch him. This can be really hard for us when he wants to do it for long periods of time.

In the last couple of months Brandon has really gotten much better at crawling. One thing he does really well is use his left hand to support his weight. He gets up on all fours. This is a really big step. His left hand still lags behind a little but he’s making improvement fast. He also often uses his left hand to hold his food and then rips pieces off and feeds himself with his right hand. Again this is a great sign of progress. Just in the last couple of days he gotten much better at pulling himself up. If he finds something at the right height he can use his right hand to get himself to his knees. He often topples over as he tries to get his left hand up but he getting much better. When it works he is incredibly pleased with himself. He will work at this for a long time without quitting, even if he gets frustrated.

He is still too small and we do all we can to supplement his food and give the highest caloric input as possible. He is still on an appetite stimulant to try and get him to grow.

The most important thing to know about Brandon is that he is such a happy kid. He smiles all the time and he loves to snuggle and give hugs. Every morning at breakfast I have to stop multiple times to let him hug me. I have to be careful because he often has a dirty face.

This is how Brandon likes to sleep. It's very cute. he also babbles when he is really tired and about to fall asleep.

Rock Band

We’ve been playing a lot of the video game Rock Band lately. We even invited some friends to come play with us. It’s really fun and everyone likes it. Brandon and Katelyn dance and even fight to get a hold of the instruments when they can. However, it does have some interesting side effects. Blake has found a new favorite song and he goes around the house singing … “Dead or Alive”. We work hard not to not use words like kill and die casually around our house so Amy wasn’t too excited about this new development.

Dad Gets No Respect

The babies woke up way too early one morning so we all slept in this chair until the sun came out. When Amy came in the babies had just woken up (for the second time) but I wasn’t quite ready to wake up yet. The boys thought they needed to get in the picture too. Yes, Blake is actually standing on my shoulder.

Playing Around

This is the boys wrestling and Katelyn cleaning in the background.

Brandon always wants to join in any rough housing.

Blake & Derek dancing to the music of my good friend Audrey's blog.

All Aboard! The Fox train is leaving the station.