Tonight was a great game and the band played great! I also got some awesome pictures. Some to share here are:
Oh yeah and AHS is still undefeated!!!
Oh yeah and AHS is still undefeated!!!
playing around a bit with the pictures from last night
10/24
Tonight we had plans suddenly changed on us. Both Corbyn and Jairon excitedly packed for their scout camp out this weekend. I got the trailer and readied everything to first drop Jade off at marching band practice, drop the boys and the trailer off for the camp out. Then just as we were about to leave, I got a 3rd call from the heme team letting me know they had been discussing Corbyn's platelet drop and they had been debating whether to let him wait till Monday or to bring him in today.
My heart sank when I was asked what his plans for the weekend were because I knew that he was not going camping. When heard "scout camp" the next question was, "does he have petechei rashes or are they worse?" After calling Corbyn over and having him lift his shirt, I was not happy to see his chest covered. I was asked how soon I could get him in. With a time frame given, I was told the ER would be expecting him. Well not only was the ER waiting, so was the admitting team.
As soon as the team tooked look and saw that not only was his chest, but arms, and legs covered in the rash, he was given no choice about being admitted, getting ivig, and missing the corn maze scout camp tonight and tomorrow. At this point I am not sure he realizes he will not be going, but he sure will once he wakes in the morning.
Huge thanks to my friends who are helping get Jade home from the game, and with the kids at the house.
My heart sank when I was asked what his plans for the weekend were because I knew that he was not going camping. When heard "scout camp" the next question was, "does he have petechei rashes or are they worse?" After calling Corbyn over and having him lift his shirt, I was not happy to see his chest covered. I was asked how soon I could get him in. With a time frame given, I was told the ER would be expecting him. Well not only was the ER waiting, so was the admitting team.
As soon as the team tooked look and saw that not only was his chest, but arms, and legs covered in the rash, he was given no choice about being admitted, getting ivig, and missing the corn maze scout camp tonight and tomorrow. At this point I am not sure he realizes he will not be going, but he sure will once he wakes in the morning.
Huge thanks to my friends who are helping get Jade home from the game, and with the kids at the house.
10/25
We are home! This was a very good and interesting stay for us at Hopkins with Corbyn. We have discovered several wonderful things we did not expect at all.
First off, several days ago we saw Dr M, here on base for a routine follow up, blood work, and paperwork for the school to verify Corbyn's ITP or his platelet disorder. What we did NOT expect was to discover that his platelets had plummeted.
About 8pm last night we made our way up to 10S in the Children's center. Funny how Corbyn and Ellie have very differing opinions about the floor, play room and what is available. Once he was fully admitted on the floor we waited for the final orders and meds.
Finally, about 9 they start the pre-med infusion, then about 10:30 the ivig infusion began. This time the ivig was scheduled to run for 8 hours. Between the length of time and the pre-meds he was given, (and maybe the fact that he is older) he did not have any side effects at all. Best of all, Corbyn was able to avoid using the Lasix treatments!
This morning blood draw shows he had an immediate response to the infusion. This is a 1st for him the entire time he has had ITP! Oh and his platelets are now at 40K!!!
Plan of action, more blood work on Thursday here with Dr M. I get to talk to the school about his PE restrictions. Basically they do not want him doing anything until he is followed with his heme team (appt will be made on Mon.) LOL this did not make Corbyn happy.
The good news? Well, we may be out of the refractory phase! What is the refractory phase? Well, refractory in the medical world is non-responsive to medications. Because he responded to the ivig last night, we may have new (maybe even old) meds available for him if we are once entering the count roller coaster.
First off, several days ago we saw Dr M, here on base for a routine follow up, blood work, and paperwork for the school to verify Corbyn's ITP or his platelet disorder. What we did NOT expect was to discover that his platelets had plummeted.
About 8pm last night we made our way up to 10S in the Children's center. Funny how Corbyn and Ellie have very differing opinions about the floor, play room and what is available. Once he was fully admitted on the floor we waited for the final orders and meds.
Finally, about 9 they start the pre-med infusion, then about 10:30 the ivig infusion began. This time the ivig was scheduled to run for 8 hours. Between the length of time and the pre-meds he was given, (and maybe the fact that he is older) he did not have any side effects at all. Best of all, Corbyn was able to avoid using the Lasix treatments!
This morning blood draw shows he had an immediate response to the infusion. This is a 1st for him the entire time he has had ITP! Oh and his platelets are now at 40K!!!
Plan of action, more blood work on Thursday here with Dr M. I get to talk to the school about his PE restrictions. Basically they do not want him doing anything until he is followed with his heme team (appt will be made on Mon.) LOL this did not make Corbyn happy.
The good news? Well, we may be out of the refractory phase! What is the refractory phase? Well, refractory in the medical world is non-responsive to medications. Because he responded to the ivig last night, we may have new (maybe even old) meds available for him if we are once entering the count roller coaster.
10/31
Well tonight's Halloween party seems to have been a success. The kids played the minute to win it games very well and we had to break the kids into 4 teams. We had a LOT of kids show up this year!
The games we played:
Eyeball super ball toss into the cauldron- yes bouncing super balls across the room into a small black plastic cauldron
Bat toss into a bucket-tossing plastic bats into a bucket across the room
Vampire Pie (chocolate pudding with whipped cream) eating race. The kids had to eat their pie the fastest with vampire teeth in and using no hands.
Spider toss-plastic spider toss into a formula can
Mummy bugger movers- moving mini marshmallows with a straw from a plate into a small cup
I think that is all we did. The pictures will tell for sure once I get them uploaded.
The games we played:
Eyeball super ball toss into the cauldron- yes bouncing super balls across the room into a small black plastic cauldron
Bat toss into a bucket-tossing plastic bats into a bucket across the room
Vampire Pie (chocolate pudding with whipped cream) eating race. The kids had to eat their pie the fastest with vampire teeth in and using no hands.
Spider toss-plastic spider toss into a formula can
Mummy bugger movers- moving mini marshmallows with a straw from a plate into a small cup
I think that is all we did. The pictures will tell for sure once I get them uploaded.
No comments:
Post a Comment