I have decided to do this post - just so I can vent some of my frustration about this particular subject. So here it goes............
I wish someone would just say out loud .....to me......."Jenn, Joe has cerebral palsy." NO ONE HAS SAID IT TO ME! I mean........I am aware he does and Joe's therapy ladies and I have talked about it. It just annoys me that I take him to the Dr.'s and we do all this CP related treatment stuff, but no one has ever looked at me and said that he has CP. Why?
It's not that I want Joe to be labeled, besides it's not a label it's just a part of who he is. That's not a bad thing - no I'm not like happy he has CP - no one wants that for their child. I am not going to view it negatively though. I refuse too. We, as in our family and Joe, will carry on living a normal and happy life. We will do whatever we need to do for him. He will never be treated any different than anyone else in this family.
I just feel like no one wants to be the one who diagnoses him or tells me he has CP. Maybe they all assume I already know? I just want a Dr. to tell me that Joe has CP and these are the things we are going to do to help him along the way. In fact, Joe's OT is having problems with my health insurance because on the billing he is diagnosed as developmentally delayed. Which is a common diagnoses in the beginning for preemie babies. They need a reason to have therapy in order for insurance to cover the sessions. They are starting to not want to pay because it's like how long is he going to be developmentally delayed?? They want a diagnoses .......... a reason little Joe has therapy! We actually have to call the Dr.'s office and ask them to diagnose him so insurance doesn't have a problem covering the sessions.
I don't want this for Joe, like I said previously. No one would, but it is what it is - so lets own up to it and lets move forward with it. It's going to be fine - this does not define Joe, it's a part of him, but not his definition! It's not his label or our family's label.
So here I am saying it out loud............
Joe has cerebral palsy.
Picture taken by the lovely Janel Johnson at Janel Johnson Photography
Wednesday, February 29, 2012
Tuesday, February 28, 2012
Joe's 6 Month Review Part 2
Okay, to say I am a little behind on the blogging about Joe's 6 month review is an understatement.
PT - As far as physical therapy goes, Kim and I had a goal that Joe would pull himself up to stand and scoot along furniture. Well ....Joe isn't doing that, but his standing has improved a ton! We still help him stand against furniture (he can't pull himself up to stand) and he seems to enjoy it. We use the ottoman in the living room - then we can put toys on it and he plays with them well he stands. It is almost like he forgets he is standing because he is having so much fun and can do it for a long time, it's just getting there that hasn't clicked :) His sitting up is what has improved the most. He can pretty much sit up by himself for a good 10 minutes. He even catches himself when he starts to tip. Joe's problem with sitting is he doesn't put himself into that sitting position we have to set him into it. I believe he could do it, but it doesn't come natural to him. It's like me just suddenly writing with my left hand - it doesn't happen it's not automatic to me. My goal is to encourage him so it becomes natural. Working on him with it over and over and over, until he just one day pulls himself up to sit up. He can play and watch TV laying on his belly, so that is what he does. If we put him into sitting he will sit and do it - he just doesn't think to do it. We also have a little walker for Joe. In this walker he can turn a complete circle and move around. When he gets tired he can stop and hang in his chair part. It also has bars all around the side so he can hold on. He is a bit short right now to reach the handles and hold on when he walks, but he likes to chew on them. Walking is still very new to him so he doesn't really understand the concept yet, but he goes backwards. He knows if he push his feet against the ground and springs them back up it will send him backwards until he hits a wall and can't move back anymore. Then Mom needs to come and push him away so he can start over. Our new goals for the next 6 months is pretty much the same, we just added taking steps into it. Not walking alone, but taking steps when we are holding on to him. We want him to learn to put one foot in front of the other. Kim started doing that and it actual made us a bit emotional because that foot in front of the other is a natural reaction in our brain, but because of Joe's injury it's not natural he has to develop a pathway in his brain to create that movement naturally. Sorry got side tracked..........it made us emotional because he started doing it put one foot in front of the other and he was doing it with his right leg. The right side of his body is the side that doesn't work well. It was a huge deal to us :)
OT - Occupational therapy is Joe's best of the three therapies. He really excels at it. Sarah works on things like stacking blocks, pulling apart stuff and putting it back together, puzzles, feeding himself, sitting, crawling on all fours, drawing, rolling the ball back and fourth, and eating-chewing food. Joe loves to play with her toys. He likes to mimic what Sarah tells him to do. Like.... put the pegs on the peg board, draw on the magnadoodle, scooping stuff and transferring it from one bucket to the next, and stacking blocks and cones. The determined look on his face is priceless. He loves to do stuff like that and he gets it......he is good at it. That makes my heart melt because he understands commands. He watches you do something and then he knows how to do it. That is big to me. I feel like his cognitive stuff is well then. He reminds me so much of his Dad in that way - when he wants to do something he wants to do it - he won't stop until he does it. Even if it doesn't work out the first time. He isn't lazy - he just keeps going and going. When he knows how to do something or figures it out he just wants to keep doing it - it almost looks like he is trying to perfect himself. I wish I was more like that in my life! He has my good looks and Raymond's determination I guess.....LOL....just kidding! I like to say that because he looks exactly like his father - but he had to of inherited all my good qualities too right? Our new goal for this next 6 months with OT is that Joe will eat with his cute cute little fork and spoon. I think I need to post a picture of them! Right now he feeds himself - with his hands. Which is a HUGE improvement and we basically met that goal from last time's goals. He also drinks all by himself with his sippy cups.
Speech - This is Joe's hardest one. The worst injury in his brain occurred in the speech part. He has made progress though. Amanda is doing an excellent job with him. I do not get to see therapy much with Amanda because she goes to daycare for his sessions, but she leaves me notes about what they have done. I can tell she is working with him because his talking and hand - eye coordination is improving. Honestly, I can't remember the goals we made because 6 months ago I had only suggested to start speech so we did. I didn't really know where we were at. I wish I would of suggested it sooner because it's going to be his biggest struggle, but I didn't know. I didn't even really notice his talking skills either because he is my first baby ever and he said Mama so I didn't really care ........ just kidding again. Truthfully, I knew he was behind, but thought it was fine because he was expected to be from the extreme preemie baby thing. His communication has improved but he only says between 4-6 words. They include: Mama, Dada, Yeah, Yumm, Mmmm, Eat or "E", and he is recently saying "Blue" he loves that crazy dog on Blue's Clues. Just yesterday he was saying "No" so maybe another new word? Amanda and I have discussed getting Mr. Joe an IPad. IPad's can do amazing things for kids that can't communicate well. They have apps you download and you can put anything on there. Joe can go to it and show me what he wants or is trying to say. It can be as complex or simple as you want it to be. It becomes more complex the older he gets. The same as speaking - the older a child is the more they discuss and request from you. An example is the IPad can have a picture of "playing" or "sleeping" Joe will point to which he wants. Or eat - bath - play - sleep - read - etc. Then he picks what he wants and we can elaborate off of it. Okay you want to eat - what do you want to eat? Then pictures of foods Joe likes will come up and he can point to them. The older he gets the more complex his options and discussions will become. Right now we wanted to set a goal or giving Joe decisions and work on pointing with his finger. Once he gets that down - we can look into the IPad more seriously. Maybe by then Blue Cross Blue Sheild will realize it's a medical necessity and pay for it too :) I am greedy! Raymond's Mom - Joe's Grandma is such a wonderful loving person and offered to help pay for one too when the time comes. What an amazing gift! She is such an incredible Mom and Grandma and we feel blessed she is in our lives!
On another note - Joe is now crying when all his therapy girlfriends leave. He has really grown attached the them. I don't blame him they are amazing! It's sweet that he hates to see them go!
PT - As far as physical therapy goes, Kim and I had a goal that Joe would pull himself up to stand and scoot along furniture. Well ....Joe isn't doing that, but his standing has improved a ton! We still help him stand against furniture (he can't pull himself up to stand) and he seems to enjoy it. We use the ottoman in the living room - then we can put toys on it and he plays with them well he stands. It is almost like he forgets he is standing because he is having so much fun and can do it for a long time, it's just getting there that hasn't clicked :) His sitting up is what has improved the most. He can pretty much sit up by himself for a good 10 minutes. He even catches himself when he starts to tip. Joe's problem with sitting is he doesn't put himself into that sitting position we have to set him into it. I believe he could do it, but it doesn't come natural to him. It's like me just suddenly writing with my left hand - it doesn't happen it's not automatic to me. My goal is to encourage him so it becomes natural. Working on him with it over and over and over, until he just one day pulls himself up to sit up. He can play and watch TV laying on his belly, so that is what he does. If we put him into sitting he will sit and do it - he just doesn't think to do it. We also have a little walker for Joe. In this walker he can turn a complete circle and move around. When he gets tired he can stop and hang in his chair part. It also has bars all around the side so he can hold on. He is a bit short right now to reach the handles and hold on when he walks, but he likes to chew on them. Walking is still very new to him so he doesn't really understand the concept yet, but he goes backwards. He knows if he push his feet against the ground and springs them back up it will send him backwards until he hits a wall and can't move back anymore. Then Mom needs to come and push him away so he can start over. Our new goals for the next 6 months is pretty much the same, we just added taking steps into it. Not walking alone, but taking steps when we are holding on to him. We want him to learn to put one foot in front of the other. Kim started doing that and it actual made us a bit emotional because that foot in front of the other is a natural reaction in our brain, but because of Joe's injury it's not natural he has to develop a pathway in his brain to create that movement naturally. Sorry got side tracked..........it made us emotional because he started doing it put one foot in front of the other and he was doing it with his right leg. The right side of his body is the side that doesn't work well. It was a huge deal to us :)
OT - Occupational therapy is Joe's best of the three therapies. He really excels at it. Sarah works on things like stacking blocks, pulling apart stuff and putting it back together, puzzles, feeding himself, sitting, crawling on all fours, drawing, rolling the ball back and fourth, and eating-chewing food. Joe loves to play with her toys. He likes to mimic what Sarah tells him to do. Like.... put the pegs on the peg board, draw on the magnadoodle, scooping stuff and transferring it from one bucket to the next, and stacking blocks and cones. The determined look on his face is priceless. He loves to do stuff like that and he gets it......he is good at it. That makes my heart melt because he understands commands. He watches you do something and then he knows how to do it. That is big to me. I feel like his cognitive stuff is well then. He reminds me so much of his Dad in that way - when he wants to do something he wants to do it - he won't stop until he does it. Even if it doesn't work out the first time. He isn't lazy - he just keeps going and going. When he knows how to do something or figures it out he just wants to keep doing it - it almost looks like he is trying to perfect himself. I wish I was more like that in my life! He has my good looks and Raymond's determination I guess.....LOL....just kidding! I like to say that because he looks exactly like his father - but he had to of inherited all my good qualities too right? Our new goal for this next 6 months with OT is that Joe will eat with his cute cute little fork and spoon. I think I need to post a picture of them! Right now he feeds himself - with his hands. Which is a HUGE improvement and we basically met that goal from last time's goals. He also drinks all by himself with his sippy cups.
Speech - This is Joe's hardest one. The worst injury in his brain occurred in the speech part. He has made progress though. Amanda is doing an excellent job with him. I do not get to see therapy much with Amanda because she goes to daycare for his sessions, but she leaves me notes about what they have done. I can tell she is working with him because his talking and hand - eye coordination is improving. Honestly, I can't remember the goals we made because 6 months ago I had only suggested to start speech so we did. I didn't really know where we were at. I wish I would of suggested it sooner because it's going to be his biggest struggle, but I didn't know. I didn't even really notice his talking skills either because he is my first baby ever and he said Mama so I didn't really care ........ just kidding again. Truthfully, I knew he was behind, but thought it was fine because he was expected to be from the extreme preemie baby thing. His communication has improved but he only says between 4-6 words. They include: Mama, Dada, Yeah, Yumm, Mmmm, Eat or "E", and he is recently saying "Blue" he loves that crazy dog on Blue's Clues. Just yesterday he was saying "No" so maybe another new word? Amanda and I have discussed getting Mr. Joe an IPad. IPad's can do amazing things for kids that can't communicate well. They have apps you download and you can put anything on there. Joe can go to it and show me what he wants or is trying to say. It can be as complex or simple as you want it to be. It becomes more complex the older he gets. The same as speaking - the older a child is the more they discuss and request from you. An example is the IPad can have a picture of "playing" or "sleeping" Joe will point to which he wants. Or eat - bath - play - sleep - read - etc. Then he picks what he wants and we can elaborate off of it. Okay you want to eat - what do you want to eat? Then pictures of foods Joe likes will come up and he can point to them. The older he gets the more complex his options and discussions will become. Right now we wanted to set a goal or giving Joe decisions and work on pointing with his finger. Once he gets that down - we can look into the IPad more seriously. Maybe by then Blue Cross Blue Sheild will realize it's a medical necessity and pay for it too :) I am greedy! Raymond's Mom - Joe's Grandma is such a wonderful loving person and offered to help pay for one too when the time comes. What an amazing gift! She is such an incredible Mom and Grandma and we feel blessed she is in our lives!
On another note - Joe is now crying when all his therapy girlfriends leave. He has really grown attached the them. I don't blame him they are amazing! It's sweet that he hates to see them go!
Friday, February 17, 2012
Robots for Blake
I designed a new blog site just for Blake - robots galore. I couldn't resist. I have a big post almost complete about Joe's 6 month review. You know - the one I promised like a month ago??? And I have lots more to say, so I best get my butt in gear on this robot love page I've created.
Stay tuned - until then enjoy the busy robot madness!
Stay tuned - until then enjoy the busy robot madness!
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