June 13th, 2018 - Kyle turned three a little over a week ago! It was a quiet home celebration but nevertheless we were excited about all the progress he's made. A lot has happened since the last update. I hope I won't miss anything important here.
Along with his third birthday was the conclusion of Birth to Three - West Virginia's early intervention program. We were very sad to say goodbye to his wonderful therapists that have worked with him for the past three years but also very thankful for all the help they provided. We will have to take Kyle to outpatient therapy from now on which is definitely more challenging than having therapists coming to our home.
Also with the end of Birth to Three is the transition to the school system. That's right - Kyle is going to school! Kyle will be attending Pre-K starting in late August. The school has integrated classrooms which means he will be in school with both typical kids and kids with special needs. He will also receive PT, OT, ST, and vision services while at school. We are not sure how he is going to handle being away from us so we are going to start slow and only send him to school for two hours a day to start. If he adjusts well then we will increase his school day.
Kyle is still getting the majority of his nutrition through fortified milk. However, there was been a dramatic improvement in his solid intake in the past two weeks or so. He is now chewing with his mouth closed and swallowing almost everything he bites off. He can only manage smaller pieces of food so he will still occasionally spit out larger pieces if he bites off more than he can chew. But he is getting braver and is slowly able to manage larger pieces on a daily basis. His favorite food is now spaghetti. He also likes pizza and is starting to try to chew and swallow meat. He is also eating yogurt and ice cream and able to swallow with his mouth closed, whereas six months ago the majority of what goes in would just drip out of his mouth. He literally went from spitting out 95% of what goes in his mouth to swallowing 95% of what goes in his mouth in a week and half! His milk intake does decrease significantly when he's eating more solids but we are hoping the calories from solids will eventually make up for it.
After a long period of almost no progress in his OT skills, Kyle started understanding more and is now able to put things in containers, would try to match shapes through the shape sorter openings, give items to others, and he loves shooting hoops! He is also using clapping to communicate. He claps for "hi", "bye", "good job", "all done". He nods in excitement when he wants ''more".
Kyle has mastered walking in his walker independently. He is able to nagivate around furniture and obsticles with his walker and turn in all directions. He gets into his walker by himself when he wants to walk and just takes off! His new favorite activity is climbing up the stairs. It was a skill he first learned last year but once he started being able to get into his walker and start walking on his own he lost interest in climbing stairs and stopped doing it. Then a few months later when I tried putting him on the stairs I realized he had forgotten how to do it. He would just cry and fuss and acted completely clueless what to do. I was terrified that he had regressed and his PT was concerned too. However, after just two days of practice he got it back and now we can't stop him from climbing up the stairs! Kyle can now stand unassisted for 20+ minutes and is consistently letting go of surfaces or your hand to stand on his own. He can also walk with one hand held or holding to a strap or my shirt. He is not walking unassisted yet but we are hoping that will happen very soon as Kyle has been approved for SDR - Selective Dorsal Rhizotomy surgery in St. Louis (See more information on their website here). Kyle has cerebral palsy from the brain damages he suffered during his extreme premature birth and the SDR surgery will eliminate spasticity for good. Most children improve their functional ambulation level after the surgery (Dr. Park, who is THE BEST neurosurgeon in the world when it comes to SDR, did a video evaluation of Kyle and predicted that he should be able to walk independently after the surgery). Dr. Park was surprised to see all the things he can do because based on his MRI his brain damages are too severe that one would never assume the level of mobility that can be acheived from these damages. But even if his mobility does not improve (I don't want to set my expectations too high because not everyone gain functional ambulation), the elimination of the spasticity means he will most likely not regress in his mobility later in life and will not suffer from the pain associated with the spasticity, which also means he will less likely to need orthopedic surgeries in the future. Dr. Park believes the best age for kids to receive the surgery is between two and four, before they spasticity causes deformity and permanent damages, and before kids form bad habits due to the tone and rely on tone for strength. They also recover faster the younger they are. Originally we were told the surgery would happen in September but we received a call last week that they had a cancellation and would be able to move up his surgery date to July!! We are now scrambing to make arrangements for the trip and starting the pre-op home exercise program to prepare him for the surgery. After the surgery Kyle will receive physical therapy 4-5 times a week as required by Dr. Park and his team because therapy is crucial to the success of the surgery. After the spasticity is gone Kyle will need to relearn how to bear weight in his legs again and how to use his new legs with no tightness. We are extremely excited about the surgery and all the possibilities that the surgery opens up for him!
Here are some videos we compiled for the SDR evaluation. It's truly amazing to see what he can do now!
Along with his third birthday was the conclusion of Birth to Three - West Virginia's early intervention program. We were very sad to say goodbye to his wonderful therapists that have worked with him for the past three years but also very thankful for all the help they provided. We will have to take Kyle to outpatient therapy from now on which is definitely more challenging than having therapists coming to our home.
Also with the end of Birth to Three is the transition to the school system. That's right - Kyle is going to school! Kyle will be attending Pre-K starting in late August. The school has integrated classrooms which means he will be in school with both typical kids and kids with special needs. He will also receive PT, OT, ST, and vision services while at school. We are not sure how he is going to handle being away from us so we are going to start slow and only send him to school for two hours a day to start. If he adjusts well then we will increase his school day.
Kyle is still getting the majority of his nutrition through fortified milk. However, there was been a dramatic improvement in his solid intake in the past two weeks or so. He is now chewing with his mouth closed and swallowing almost everything he bites off. He can only manage smaller pieces of food so he will still occasionally spit out larger pieces if he bites off more than he can chew. But he is getting braver and is slowly able to manage larger pieces on a daily basis. His favorite food is now spaghetti. He also likes pizza and is starting to try to chew and swallow meat. He is also eating yogurt and ice cream and able to swallow with his mouth closed, whereas six months ago the majority of what goes in would just drip out of his mouth. He literally went from spitting out 95% of what goes in his mouth to swallowing 95% of what goes in his mouth in a week and half! His milk intake does decrease significantly when he's eating more solids but we are hoping the calories from solids will eventually make up for it.
After a long period of almost no progress in his OT skills, Kyle started understanding more and is now able to put things in containers, would try to match shapes through the shape sorter openings, give items to others, and he loves shooting hoops! He is also using clapping to communicate. He claps for "hi", "bye", "good job", "all done". He nods in excitement when he wants ''more".
Kyle has mastered walking in his walker independently. He is able to nagivate around furniture and obsticles with his walker and turn in all directions. He gets into his walker by himself when he wants to walk and just takes off! His new favorite activity is climbing up the stairs. It was a skill he first learned last year but once he started being able to get into his walker and start walking on his own he lost interest in climbing stairs and stopped doing it. Then a few months later when I tried putting him on the stairs I realized he had forgotten how to do it. He would just cry and fuss and acted completely clueless what to do. I was terrified that he had regressed and his PT was concerned too. However, after just two days of practice he got it back and now we can't stop him from climbing up the stairs! Kyle can now stand unassisted for 20+ minutes and is consistently letting go of surfaces or your hand to stand on his own. He can also walk with one hand held or holding to a strap or my shirt. He is not walking unassisted yet but we are hoping that will happen very soon as Kyle has been approved for SDR - Selective Dorsal Rhizotomy surgery in St. Louis (See more information on their website here). Kyle has cerebral palsy from the brain damages he suffered during his extreme premature birth and the SDR surgery will eliminate spasticity for good. Most children improve their functional ambulation level after the surgery (Dr. Park, who is THE BEST neurosurgeon in the world when it comes to SDR, did a video evaluation of Kyle and predicted that he should be able to walk independently after the surgery). Dr. Park was surprised to see all the things he can do because based on his MRI his brain damages are too severe that one would never assume the level of mobility that can be acheived from these damages. But even if his mobility does not improve (I don't want to set my expectations too high because not everyone gain functional ambulation), the elimination of the spasticity means he will most likely not regress in his mobility later in life and will not suffer from the pain associated with the spasticity, which also means he will less likely to need orthopedic surgeries in the future. Dr. Park believes the best age for kids to receive the surgery is between two and four, before they spasticity causes deformity and permanent damages, and before kids form bad habits due to the tone and rely on tone for strength. They also recover faster the younger they are. Originally we were told the surgery would happen in September but we received a call last week that they had a cancellation and would be able to move up his surgery date to July!! We are now scrambing to make arrangements for the trip and starting the pre-op home exercise program to prepare him for the surgery. After the surgery Kyle will receive physical therapy 4-5 times a week as required by Dr. Park and his team because therapy is crucial to the success of the surgery. After the spasticity is gone Kyle will need to relearn how to bear weight in his legs again and how to use his new legs with no tightness. We are extremely excited about the surgery and all the possibilities that the surgery opens up for him!
Here are some videos we compiled for the SDR evaluation. It's truly amazing to see what he can do now!
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| St. Patrick's Day |
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| Trying out the potty (just to get him used to the idea of sitting on it) |
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| First time at a restaurant |
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| At Second NICU Reunion |
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| Playing with the Shape Sorter |
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| Happy 3rd Birthday! |
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| Enjoying His New Indoor Bounce House |