Today was the first major headache free day Corbyn has had! This morning he only had a minor headache but nothing to really bother him.
It has taken nearly a week since he got the concussion to really start feeling better. This has been a long hard recovery for him. Due to his platelet disorder a minor concussion is not a simple matter, nor a short quick recovery like with most children.
We are all relieved that he is finally showing signs of full recovery.
Sunday, December 21, 2014
Friday, December 19, 2014
Going back home!
Well this was a fairly short ER stay tonight!
Thank goodness everything checked out okay tonight! Looks like the headache is a combination of the concussion that Corbyn sustained on Tuesday when he got into a fight at school and was knocked out.
He simply needs more time to heal. To complicate matters he appears to have had a slight reaction to the IVIg causing the headache to become worse and last longer. The ER staff is sure the dizziness and vomiting is from the concussion and increased from the headache.
The good news is that the head CT came back clean. There is no sign of cerebral hemorrhaging (brain bleeding), also his platelet count is up to 130k. Not as high as his last IVIg count of 170k but we are still thrilled with the 130k count.
We are just about to head back home. He is still on concussion restrictions. No active activities. No biking, running, jumping, (fighting) or similar activities. Not that he is interested in these activities anyway. LOL he just told the Dr. that he never wants a headache, vomiting, or dizziness like what he has experienced today. So time will tell if he has truly learned from this experience.
I think he has.
Thank goodness everything checked out okay tonight! Looks like the headache is a combination of the concussion that Corbyn sustained on Tuesday when he got into a fight at school and was knocked out.
He simply needs more time to heal. To complicate matters he appears to have had a slight reaction to the IVIg causing the headache to become worse and last longer. The ER staff is sure the dizziness and vomiting is from the concussion and increased from the headache.
The good news is that the head CT came back clean. There is no sign of cerebral hemorrhaging (brain bleeding), also his platelet count is up to 130k. Not as high as his last IVIg count of 170k but we are still thrilled with the 130k count.
We are just about to head back home. He is still on concussion restrictions. No active activities. No biking, running, jumping, (fighting) or similar activities. Not that he is interested in these activities anyway. LOL he just told the Dr. that he never wants a headache, vomiting, or dizziness like what he has experienced today. So time will tell if he has truly learned from this experience.
I think he has.
Back at the ER
Well we are back at the ER with Corbyn. Since he came home on Wednesday he has continued to have a bad headache that has required round the clock tylonel. Well this afternoon I pulled him out of school early because he needed additional blood work drawn to check his platelet levels. By the time I got him home around 2-2:30 he was not only dealing with a horrid headache, but dizziness, and vomiting.
After multiple calls back and forth with the johns Hopkins Peds Hematology team it was decided we needed to bring him back immediately and have another CT-scan run before anything was decided. So now here we sit and wait for test results.
After multiple calls back and forth with the johns Hopkins Peds Hematology team it was decided we needed to bring him back immediately and have another CT-scan run before anything was decided. So now here we sit and wait for test results.
Wednesday, December 17, 2014
Jade is 16!
This year as a family we celebrated Jade's birthday early. Since her dad was going to be leaving town before her birthday and missing her concert, we wanted her to get her gift while he was still here.
Jade's main gift is a new intermediate flute that will convert to open holes.
This was the best gift of all. When she first start to open it she looked at her new flute speechless and in awe not wanting to touch it. Finally, after being told to she gently touched her flute, let out a little squeal of delight, and gently picked it up. Very carefully and gingerly she put her new flute together and gasped in awe and delight with how easily it went together.
Then with the flute in her hands, she felt the weight, and informed up not only had she been oogling over the very same flute, but loved how light it was. After some coaxing she gently placed her new friend to her lips and began to let the melodies to flow. As the beautiful melodies left her fingers and flute she melted into her chair and squealed with delight again. This was a sign of true love at first sight, tough, and playing.
Not only did she have her flute for her concert, but she has been loving this special tool just for her. Now for her Masquerade Ball themed party!
Jade's main gift is a new intermediate flute that will convert to open holes.
This was the best gift of all. When she first start to open it she looked at her new flute speechless and in awe not wanting to touch it. Finally, after being told to she gently touched her flute, let out a little squeal of delight, and gently picked it up. Very carefully and gingerly she put her new flute together and gasped in awe and delight with how easily it went together.
Then with the flute in her hands, she felt the weight, and informed up not only had she been oogling over the very same flute, but loved how light it was. After some coaxing she gently placed her new friend to her lips and began to let the melodies to flow. As the beautiful melodies left her fingers and flute she melted into her chair and squealed with delight again. This was a sign of true love at first sight, tough, and playing.
Not only did she have her flute for her concert, but she has been loving this special tool just for her. Now for her Masquerade Ball themed party!
Kids Concerts and Performances!
This month has been very busy with the kids Holiday concerts and musical performances. The high school started the month off with the concert on December 1st (Yes Jade's 16th birthday). They changed the format this year and did a variety show style. This allowed for the band, orchestra, concert band, marching band, choirs, symphonic band, chamber orchestra, jazz band, and a variety of others to all perform together. The final part of the concert was the marching band all on stage, about 120 kids, playing their marching band songs for all their family members that came. Jade is in Marching and Concert band. She was glad when this week was over.
Personally, I loved the format and being able to see everyone perform together.
December 5th Fame performed
December 6th, the Marching Band marched in 2 local parades. All the kids were able to play in the morning parade, however, the afternoon parade, only the brass instruments played as it was raining to hard for the woodwinds to be in the rain. Poor Jade was so wet and cold when the afternoon parade was over.
Then that even the kids wrapped up their final Fame performance. They had some great singers this year and we could really hear them all way to the back of the stage.
The 10th gave way to the elementary kids concert. The 4th and 5th grade choir, band and orchestra. Zach is in both orchestra and choir. He is with the sopranos and plays the violin. Ellie can't wait until next year when she can join orchestra and choir.
Then tonight the middle school had their band concert for 6th grade and concert bands. Jairon had a blast on stage, but Corbyn was missing from tonight performance. Sadly even if he had not gotten in a fight and been suspended, having needed IVIg today, he would have had to miss the concert tonight anyway. However, dangerously low platelet count and emergency infusion is a much better reason to miss a concert than, suspension, emergency infusion, and head trauma observation due to starting a fight. Oh well... What can you do?
Personally, I loved the format and being able to see everyone perform together.
December 5th Fame performed
December 6th, the Marching Band marched in 2 local parades. All the kids were able to play in the morning parade, however, the afternoon parade, only the brass instruments played as it was raining to hard for the woodwinds to be in the rain. Poor Jade was so wet and cold when the afternoon parade was over.
Then that even the kids wrapped up their final Fame performance. They had some great singers this year and we could really hear them all way to the back of the stage.
The 10th gave way to the elementary kids concert. The 4th and 5th grade choir, band and orchestra. Zach is in both orchestra and choir. He is with the sopranos and plays the violin. Ellie can't wait until next year when she can join orchestra and choir.
Then tonight the middle school had their band concert for 6th grade and concert bands. Jairon had a blast on stage, but Corbyn was missing from tonight performance. Sadly even if he had not gotten in a fight and been suspended, having needed IVIg today, he would have had to miss the concert tonight anyway. However, dangerously low platelet count and emergency infusion is a much better reason to miss a concert than, suspension, emergency infusion, and head trauma observation due to starting a fight. Oh well... What can you do?
Dr Who Scarf Fight????
Yes You read that right... There was a fight between TWO teenage boys over a Dr Who scarf at the middle school yesterday. The end results were far from desirable and we can ONLY hope the primary party in this situation not only realizes the severity of the situation, but also learned a valuable lesson.
So what happened?
Well yesterday morning just before 9am I received a call from the middle school letting me know that Corbyn had been beat up. Initially, the school thought that we should press charges because there was no way he could have been involved in the situation. However, more pressing was the fact that we needed to get him to the ER immediately for a concussion evaluation and make sure there was cerebral hemorrhaging due to Corbyn being punched multiple times in the face, knocked out, and swelling already occurring.
With this being said my mind was racing a million miles. I called the peds and hematology offices and asked about which ER to take him. Both said the nearest local ER. I then called and cancelled my physical therapy appointments, Frank called work and was told to deal with the situation. We left for the school. The next call from the school was the assistant principal who informed us he was a partial instigator in the situation and she needed to talk with us as soon as we arrived.
Corbyn was already in her office and not looking happy at all. She informed us what she had already told us over the phone right in front of Corbyn and let us know she had to suspend him as well as the other child. The poor child when we agreed with her that he deserved the suspension. He had a look of horror and she (the assistant principal) had a look of relief.
That was totally not fair or right, mom and dad sided with the principal this time. Sorry kid, start a fight and you lose any chance for argument.
How did the fight start?
The kids were waiting for the 6th grader band and choir to finish practicing and got bored so they started bugging each other. Several kids thought it would be funny to poke Corbyn's Dr Who scarf. Well, Corbyn decided to tell the kids "touch my scarf again and I'll punch you in the face." After he said this, the kids took his "dare" to heart and decided to touch to see what would happen. Corbyn swung and missed the 1st boy, they kept on, so now this became a game to the others until he actually struck one of the kids. This child fought back. He fought back hard. Hard enough in fact to knock him out. Oh and he just happened to get the tallest kid in school too...
Normally, boys getting into a fight is not that big a deal. Well, that is when you have to medically normal teens. For 7 years now, as much as he wishes he were normal he is not. Corbyn has a platelet disorder called Chronic Refractive Immune Thromocytopenic Purpura or a bleeding/platelet disorder where the body kills the platelets before they can enter the bloodstream. A healthy person requires a 350,000 platelet count per unit of blood. During the time of the fight we thought Corbyn's platelet count was 33,000-44,000, however blood work proved his count was 12,000. Yes, that is only 0.03% of the required healthy count. Even at 33k-44k that is only 0.09%-0.1%. So even at 44k he would still not have 1% of the required platelets needed for clotting.
When the local ER saw the blood count of 12k, they freaked out and arranged for immediate PICU medivac to Johns Hopkins Children's Center Shock Trauma. He was transported for head trauma observation, emergency IVIg infusion, and PICU care if needed. Thank goodness the PICU care was not needed.
Yes, he is now home, exhausted, frustrated, tired from having to retell his story a millions times over, not happy about being chewed out. He is still suspended through tomorrow but hopefully having learned a lesson.
Although just because he is home, does not mean all is well. We have to watch him still due to the concussion he sustained. If his headache does not go away he have to call his hematologist back and he may still have to have another round of CT or MRI scans to check for micro-cerebral hemorrhaging. If he becomes dizzy or nauseous then we are to call the hematologist and peds dr right away and take him back to the ER. If he begins seeing spots, vomiting, and becomes dizzy, then we are not to wait, but to call 911 immediately. We are to inform them he has a platelet disorder, a recent concussion, and possible cerebral hemorrhaging combined with dangerously low platelets and that he needs immediate transport letting them know his hematology team is at Johns Hopkins.
All of this over a scarf....
So what happened?
Well yesterday morning just before 9am I received a call from the middle school letting me know that Corbyn had been beat up. Initially, the school thought that we should press charges because there was no way he could have been involved in the situation. However, more pressing was the fact that we needed to get him to the ER immediately for a concussion evaluation and make sure there was cerebral hemorrhaging due to Corbyn being punched multiple times in the face, knocked out, and swelling already occurring.
With this being said my mind was racing a million miles. I called the peds and hematology offices and asked about which ER to take him. Both said the nearest local ER. I then called and cancelled my physical therapy appointments, Frank called work and was told to deal with the situation. We left for the school. The next call from the school was the assistant principal who informed us he was a partial instigator in the situation and she needed to talk with us as soon as we arrived.
Corbyn was already in her office and not looking happy at all. She informed us what she had already told us over the phone right in front of Corbyn and let us know she had to suspend him as well as the other child. The poor child when we agreed with her that he deserved the suspension. He had a look of horror and she (the assistant principal) had a look of relief.
That was totally not fair or right, mom and dad sided with the principal this time. Sorry kid, start a fight and you lose any chance for argument.
How did the fight start?
The kids were waiting for the 6th grader band and choir to finish practicing and got bored so they started bugging each other. Several kids thought it would be funny to poke Corbyn's Dr Who scarf. Well, Corbyn decided to tell the kids "touch my scarf again and I'll punch you in the face." After he said this, the kids took his "dare" to heart and decided to touch to see what would happen. Corbyn swung and missed the 1st boy, they kept on, so now this became a game to the others until he actually struck one of the kids. This child fought back. He fought back hard. Hard enough in fact to knock him out. Oh and he just happened to get the tallest kid in school too...
Normally, boys getting into a fight is not that big a deal. Well, that is when you have to medically normal teens. For 7 years now, as much as he wishes he were normal he is not. Corbyn has a platelet disorder called Chronic Refractive Immune Thromocytopenic Purpura or a bleeding/platelet disorder where the body kills the platelets before they can enter the bloodstream. A healthy person requires a 350,000 platelet count per unit of blood. During the time of the fight we thought Corbyn's platelet count was 33,000-44,000, however blood work proved his count was 12,000. Yes, that is only 0.03% of the required healthy count. Even at 33k-44k that is only 0.09%-0.1%. So even at 44k he would still not have 1% of the required platelets needed for clotting.
When the local ER saw the blood count of 12k, they freaked out and arranged for immediate PICU medivac to Johns Hopkins Children's Center Shock Trauma. He was transported for head trauma observation, emergency IVIg infusion, and PICU care if needed. Thank goodness the PICU care was not needed.
Yes, he is now home, exhausted, frustrated, tired from having to retell his story a millions times over, not happy about being chewed out. He is still suspended through tomorrow but hopefully having learned a lesson.
Although just because he is home, does not mean all is well. We have to watch him still due to the concussion he sustained. If his headache does not go away he have to call his hematologist back and he may still have to have another round of CT or MRI scans to check for micro-cerebral hemorrhaging. If he becomes dizzy or nauseous then we are to call the hematologist and peds dr right away and take him back to the ER. If he begins seeing spots, vomiting, and becomes dizzy, then we are not to wait, but to call 911 immediately. We are to inform them he has a platelet disorder, a recent concussion, and possible cerebral hemorrhaging combined with dangerously low platelets and that he needs immediate transport letting them know his hematology team is at Johns Hopkins.
All of this over a scarf....
November/December Catch-Up
Seems I have posted very little these two months. I am going to copy from Facebook first them go back through the pictures and see what I have missed posting.
11/21
Oh my goodness! Ellie just came running out of her room telling me
"Mom! Zach is pretending to be a Weeping Angel on me!"
ROFL she was totally annoyed when I told her to just "ignore him" and go to bed.
"but mom, you can't just ignore weeping angels"
LOL yes you can if the weeping angel is your brother... (sigh)
11/21
Oh my goodness! Ellie just came running out of her room telling me
"Mom! Zach is pretending to be a Weeping Angel on me!"
ROFL she was totally annoyed when I told her to just "ignore him" and go to bed.
"but mom, you can't just ignore weeping angels"
LOL yes you can if the weeping angel is your brother... (sigh)
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