Today has been a very busy day at Children’s once again. Our day started at 9:00 with the ITP hemo specialist. Corbyn’s platelet level is currently sitting at 5000 per unit. He has a long way to go to meet the minimum 100,000 platelets per unit. Right now, his numbers are going up and down and he is continuing to bruise very easy.
Jade is doing very well and is about 45% for height and 10% for weight. Her dancing has helped her to gain weight through building muscles. She did very well and does not need to see her doctor for 6 months. We then talked with the dr again about Corbyn and his issues with school. Both doctors we saw today for Corbyn and Jade feel that he is taking to long to process and they feel that he needs a complete learning evaluation. They want to see if they pinpoint just where his processing issues are coming from and the best way to help him.
The doctor feels that the reason Corbyn is spacing out is he is being bombarded with to many details and to much information for him to continue absorbing all the information throughout the day. She really feels that his staring episodes are due to him not understanding what is being said and his refusal is not exactly refusal but information overload.
We will be getting a complete learning evaluation, possible OT evaluation, and if the evals do not show exactly what is going on then we will add a neuropsychologist to the team to work with him.
Tuesday, December 16, 2008
Wednesday, December 3, 2008
Crazy Busy Week
This week following Thanksgiving has been extremely busy. As the PTA President I am in charge of the Holiday Shop at the elementary school. This project has been a major undertaking. The time to organize, inventory, set up, and maintain the shop has taken much more time than expected. So far the kids love the opportunity though so the extra work is worth it.
Not to mention we are still dealing with Corbyn's dangerously low platelet count, other appointments at Children's, pre-audition meetings with the Denver School of Arts for Celidah, college and dance classes. All in all I am discovering that I simply cannot continue the current schedule so the kids are going to have to drop some dance classes.
Right now I am trying to figure out which days to drop being at the dance school and trying to decide which classes are going to work with a set schedule and not impact any classes. However, I am not seeing an alternative to mess one of the two up.I am thinking I may drop them each down to two classes, except for Zach and Chantelle and leave them in one only. The new dance schedule will begin in Jan as we are already into Dec and the kids have auditions for lead roles for the upcoming show.
One unforunate factor is the owner of the dance school does not seem to understand that when one of my children misses school due to illness they also must miss dance. This is for a couple reasons, one I do not want my kids getting others sick, and if they cannot complete school then they need to go to bed early not work their bodies really hard. Also when they are sick they are more likely to get sicker due to a lower immune system.
Not to mention we are still dealing with Corbyn's dangerously low platelet count, other appointments at Children's, pre-audition meetings with the Denver School of Arts for Celidah, college and dance classes. All in all I am discovering that I simply cannot continue the current schedule so the kids are going to have to drop some dance classes.
Right now I am trying to figure out which days to drop being at the dance school and trying to decide which classes are going to work with a set schedule and not impact any classes. However, I am not seeing an alternative to mess one of the two up.I am thinking I may drop them each down to two classes, except for Zach and Chantelle and leave them in one only. The new dance schedule will begin in Jan as we are already into Dec and the kids have auditions for lead roles for the upcoming show.
One unforunate factor is the owner of the dance school does not seem to understand that when one of my children misses school due to illness they also must miss dance. This is for a couple reasons, one I do not want my kids getting others sick, and if they cannot complete school then they need to go to bed early not work their bodies really hard. Also when they are sick they are more likely to get sicker due to a lower immune system.
Sunday, November 30, 2008
Happy Birthday Jade
Thanksgiving is over and it is now time to start decorating for Christmas. The kids are very excited to be getting ready to start some of our family traditions. The first one which will start tomorrow is pulling all the decorations out of the garage and starting to decorate. The biggest favorite at the first of December is watching the Polar Express while setting the tree up. When we watch the Polar Express we always eat hot biscuits and have hot chocolate for dinner. This will be perfect with after 3 days of snow.
Tomorrow is also Jade’s 10th birthday. What a special day for her as she too has come a long way. I find it hard to believe that 7 years ago she was diagnosed with autism and we were told her outlook in the social and functioning end was a dreary one. However, here we are 7 years later and she is now in the 3rd grade in a fully regular education class and no IEP supports.
We are so proud of how far she has come and how well she is doing in everything.
Happy Birthday Jade!
Tomorrow is also Jade’s 10th birthday. What a special day for her as she too has come a long way. I find it hard to believe that 7 years ago she was diagnosed with autism and we were told her outlook in the social and functioning end was a dreary one. However, here we are 7 years later and she is now in the 3rd grade in a fully regular education class and no IEP supports.
We are so proud of how far she has come and how well she is doing in everything.
Happy Birthday Jade!
Monday, November 24, 2008
Idiopathic Thrombocytopenic Purpura (ITP)
Well this week has been quite a week to get to this point. How do medical moms hold everything together when all it feels like is one blow after another? For me it just seems that as soon as something looks like it will be resolving another mountain is placed before me to climb. This time the mountain is called Idiopathic Thrombocytopenic Purpura (ITP).
It seems that Corbyn does not have platelets maintaining in his body right now and for unknown reasons. His platelet count is 1000, the normal low according to sites on line is 150,000, and the normal high 400,000-500,000 (depends on the site). With a platelet count of only 1000 it is no wonder he has the horrid bruises he does have.
Yesterday I circled all his bruises and counted 42 circles. Today when we saw the dr there were many more. She told me to expect even more bruises with his platelet levels. I tried NOT to freak out when the urinalysis came back with a moderate amount of blood. But I am glad, ok not just glad but relived, that the leukemia tests came back normal so that was ruled out!!!
We have been severely limited on what he can do. Not to mention Corbyn was suspended from school today for carrying a pocketknife. It turns out the pocketknife is actually an old nail clipper set. Yet, still he had a “dangerous weapon” on school grounds so therefore had to be suspended. This has already started out to be one heck of a week, one I wish I could just curl up in ball and forget about. At least we got to the bottom of the bullying. That was a big misunderstanding and he now realizes that he has not been bullied but just playing with other kids.
I think the best thing to wrap up this week with is a poem that someone posted in my college class. The Author is Unknown.
Don't You Quit
It seems that Corbyn does not have platelets maintaining in his body right now and for unknown reasons. His platelet count is 1000, the normal low according to sites on line is 150,000, and the normal high 400,000-500,000 (depends on the site). With a platelet count of only 1000 it is no wonder he has the horrid bruises he does have.
Yesterday I circled all his bruises and counted 42 circles. Today when we saw the dr there were many more. She told me to expect even more bruises with his platelet levels. I tried NOT to freak out when the urinalysis came back with a moderate amount of blood. But I am glad, ok not just glad but relived, that the leukemia tests came back normal so that was ruled out!!!
We have been severely limited on what he can do. Not to mention Corbyn was suspended from school today for carrying a pocketknife. It turns out the pocketknife is actually an old nail clipper set. Yet, still he had a “dangerous weapon” on school grounds so therefore had to be suspended. This has already started out to be one heck of a week, one I wish I could just curl up in ball and forget about. At least we got to the bottom of the bullying. That was a big misunderstanding and he now realizes that he has not been bullied but just playing with other kids.
I think the best thing to wrap up this week with is a poem that someone posted in my college class. The Author is Unknown.
Don't You Quit
When things go wrong as they sometimes will,
When the road you're trudging seems all up hill.
When funds are low and the debts are high.
And you want to smile, but you have to sigh.
When care is pressing you down a bit.
Rest, if you must, but don't you quit.
Life is queer with its twists and turns.
As everyone of us sometimes learns.
And many a failure turns about
When he might have won had he stuck it out.
Don't give up though the pace seems slow -
You may succeed with another blow.
Success is failure turned inside out -
The silver tint of the clouds of doubt.
And you never can tell how close you are.
It may be near when it seems so far:
So stick to the fight when you're hardest hit
It's when things seem worst that you must not quit.
Sunday, November 23, 2008
Found the Real “Bully”….
After having Corbyn take a bath, I circled every single bruise on his body and we discussed why I was circling his bruises. Holy cow the child has 42 circles on his body!!! During the circling session we talked about the fact that I would be talking with his principal, his primary teacher, (he has a team of three) the school nurse, and his peds dr. Confused he asked me why so I let him know that we need to find out why he is getting so many bruises and why they are not leaving.
I then called Jairon in showed him Jairon’s forehead when just last week he had a huge goose egg due to running right into the wall. Yes, the darn kid ran and did not stop till the wall stopped him knocking him on his butt. I asked Corbyn where the bruise was (gone of course). Then had him show me his leg where he hit the monkey bars and asked what the difference is. We talked about the fact that the dr needs to help us find out why he has so many bruises that are not leaving.
We also talked about bullying and his version. Turns out he is getting “bullied” when playing soccer. The conversation we had follows.
Me pushing him: I do not like you
Me pushing him: get away from me
Is this child doing this to you?
Corbyn “no”
Has he pushed you down on the playground when playing “no”
Has he pushed you out of line? “no”
Has he pushed you off the playground equipment? “no”
Has he pushed you since he got suspended (he was suspended for pushing another child a while back) “no”
Has he tripped you when you are running? “yes, when we are trying to kick the soccer ball” (ah ha moment)
“sometimes we get in a big crowd everyone trying to kick the ball and he kicks me”
“I like my shoes because they help me move really fast from the back of the crowd to the front where the ball is, and we all kick and get kicked”
At this point I started to laugh and told him if anyone is getting bullied it is the soccer ball with everyone trying to make a goal.
We have a misunderstanding about what bullying is and is not. This is an issue I do need to bring to the principal so this can be addressed. If he is confused then I know others are too.
I then called Jairon in showed him Jairon’s forehead when just last week he had a huge goose egg due to running right into the wall. Yes, the darn kid ran and did not stop till the wall stopped him knocking him on his butt. I asked Corbyn where the bruise was (gone of course). Then had him show me his leg where he hit the monkey bars and asked what the difference is. We talked about the fact that the dr needs to help us find out why he has so many bruises that are not leaving.
We also talked about bullying and his version. Turns out he is getting “bullied” when playing soccer. The conversation we had follows.
Me pushing him: I do not like you
Me pushing him: get away from me
Is this child doing this to you?
Corbyn “no”
Has he pushed you down on the playground when playing “no”
Has he pushed you out of line? “no”
Has he pushed you off the playground equipment? “no”
Has he pushed you since he got suspended (he was suspended for pushing another child a while back) “no”
Has he tripped you when you are running? “yes, when we are trying to kick the soccer ball” (ah ha moment)
“sometimes we get in a big crowd everyone trying to kick the ball and he kicks me”
“I like my shoes because they help me move really fast from the back of the crowd to the front where the ball is, and we all kick and get kicked”
At this point I started to laugh and told him if anyone is getting bullied it is the soccer ball with everyone trying to make a goal.
We have a misunderstanding about what bullying is and is not. This is an issue I do need to bring to the principal so this can be addressed. If he is confused then I know others are too.
Totally Confused now...
Wow what a morning I have had. I have had many replies to the emails I sent out with some very good responses and now I am really confused.
Last night when I took the pictures of my sons bruises he had one on his forehead that was barely visible, yet today it is bigger, darker and shows up much better on the camera. He had no clue what happened and our 7 yr old said "remember you bumped your head on the door?"
After describing this situation on one of my special needs boards some of the advice I have received is to make sure we are seen by the dr and ASAP tomorrow. After having watched the one bruise go from barely there to dark and bigger I am really wondering if I was right to get so worked about the bullying. Is this really bullying, just normal 8 yr old boys playing, just one who normal rough housing suddenly is getting bad bruises.
I still am working on not kicking myself for not seeing the bruises before now. My husband said he has been watching the one from the monkey bar and is concerned by it not healing yet and I guess it is over a week old, so far it shows no sign of the swelling going down or healing according to my husband.
Why does parenting have to be so hard sometimes?
Last night when I took the pictures of my sons bruises he had one on his forehead that was barely visible, yet today it is bigger, darker and shows up much better on the camera. He had no clue what happened and our 7 yr old said "remember you bumped your head on the door?"
After describing this situation on one of my special needs boards some of the advice I have received is to make sure we are seen by the dr and ASAP tomorrow. After having watched the one bruise go from barely there to dark and bigger I am really wondering if I was right to get so worked about the bullying. Is this really bullying, just normal 8 yr old boys playing, just one who normal rough housing suddenly is getting bad bruises.
I still am working on not kicking myself for not seeing the bruises before now. My husband said he has been watching the one from the monkey bar and is concerned by it not healing yet and I guess it is over a week old, so far it shows no sign of the swelling going down or healing according to my husband.
Why does parenting have to be so hard sometimes?
Saturday, November 22, 2008
What the ????
Hey guys I need advice on the best approach for a serious issue we just discovered. The other day when our 8 yr old had dance I noticed he had many dark spots on his legs and kinda brushed it off as him being dirty from playing outside and not having had a bath. Well today at dance camp I realized he had bruises. Not only did he have bruises, but he had more bruises then he had a few days ago. To make sure they were what I thought I called him off the dance floor and was horrified and shocked that his legs are COVERED in huge and small bruises. The front, back, sides, everywhere. When I mentioned this to the director she mentioned something about being bullied at school. At first I defended the school as our principal is an anal micro-managing gotta know everything kind of person and figured that if it really were happening like she said I hopefully would know something about this.
After his class I pulled him into the office had him remove his shirt and he not only has bruises on his legs but back, hip, arms, and one on his face. HOW could I not notice??? It does help me to know that the PTA treasure has not noticed him being covered in bruises either and she has been at my house or seen the children everyday for the past couple weeks. But still regardless of how crazy busy I have been as his mother I should have known. Also it should not matter that this child has a difficult time expressing his thoughts, one would think if a child is getting bruises at school one would investigate.
Right now I am really torn between anger between the school and myself for not seeing any signs before now. I have emailed the principal requesting a meeting with her concerning this matter on Monday and will not accept her delaying meeting with me as this is NOT a PTA but a parent/student/safety matter. Is there anything else I need to do. The pictures I have taken show just a few of the bruises. He has over a dozen bruises on his body and has a very difficult time expressing himself especially when frustrated.
I know I need to come across as assertive, but not obnoxious as I am the PTA president. But most important I am the parent of a child very close to being placed on an IEP. What else do I need to do, not do, make sure I do? Does that make sense? Right now I am just so ticked off that this has happened to my son.
Most of the bruises are shown in these pictures.
This picture the swollen bruise can be seen (apparently that one is from a monkey bar?) but there are many other small bruises inclucing around the ankles.
After his class I pulled him into the office had him remove his shirt and he not only has bruises on his legs but back, hip, arms, and one on his face. HOW could I not notice??? It does help me to know that the PTA treasure has not noticed him being covered in bruises either and she has been at my house or seen the children everyday for the past couple weeks. But still regardless of how crazy busy I have been as his mother I should have known. Also it should not matter that this child has a difficult time expressing his thoughts, one would think if a child is getting bruises at school one would investigate.
Right now I am really torn between anger between the school and myself for not seeing any signs before now. I have emailed the principal requesting a meeting with her concerning this matter on Monday and will not accept her delaying meeting with me as this is NOT a PTA but a parent/student/safety matter. Is there anything else I need to do. The pictures I have taken show just a few of the bruises. He has over a dozen bruises on his body and has a very difficult time expressing himself especially when frustrated.
I know I need to come across as assertive, but not obnoxious as I am the PTA president. But most important I am the parent of a child very close to being placed on an IEP. What else do I need to do, not do, make sure I do? Does that make sense? Right now I am just so ticked off that this has happened to my son.
Most of the bruises are shown in these pictures.
This picture the swollen bruise can be seen (apparently that one is from a monkey bar?) but there are many other small bruises inclucing around the ankles.
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