So they took new counts and things are still looking good. They have 3 different measurements when they look at the immune system: t-cells, b-cells and monocytes.
Max is 100% Sam on the t-cells and monocytes and 99% Sam with the b-cells. They want it to be 100% Sam, but 99% at this stage is not a problem.
Otherwise things are going well. Kidney tests are not great, just a little out of the normal peramiters. So they took him off a med.
All else is still good. We're starting to wrestle again, and getting more and more active- and less and less pampered. So that is good.
Football starts next week. Should be a very exciting season. First home game is Friday September 11th vs Brookside. JV will face Del Oro JV. That may be a doozy.
Thursday, August 13, 2009
Monday, August 10, 2009
From Davis?
I knew a Sarah Simpson at Davis. I have a sarah simpson 'follower' on the blog. Are you the same? Can't figure out how to contact you to ask without using the blog. Sorry everyone.
Where have I been?
OK OK. So we got out of the hospital, and I just stopped logging in. I say fair enough- give the guy (me) a break. I just was happy to be home, and when I've had free time at the end of the night between kids going to bed and Jamie and I going to sleep- I've been able to hang out with Jamie!
That's been nice. We didn't spend a night together for 5 weeks.
So I saw Jenny at the store in town and she got after me for not posting any more updates. I said I would and she threatened to hold me to that. So here are updates.
Coming home has been real real cool. The folks around town have worked so hard to make our house ready for Max to come home. We have a lawn for crying out loud! And Sprinklers!
Max is doing better and better just being home and moving around. His numbers keep doing great. His blood draw this morning shows that his platelets have actually reached the level where he is allowed to ride his bike or scooter, so that is a nice step.
He has tons of meds every day. Like 7 pills in the morning, 2 in the afternoon, 5 at dinner, then 2 at 1:30 in the morning. Yep. but hey.
A big step was this past Thursday (I think)- Max got his pick line out of his arm. He had the tubes in there and Jamie and I were doing the blood draws every Monday and Thursday mornings then driving the vials of blood down to roseville. We also had to hook him up to IV fluids at night. A bit of an inconvenience, but that is gone now. That night Max said the dinner prayer and he thanked God for "the best- ... one of the best days of my life" for getting it out.
People have asked about Sam- He is fine. Literally nothing slowed him down after that day. And Baylor is good, we've all settled into our home routine. We have to stay home way more than we normally would, but that is about it. Max wears a mask when he goes outside. We play soccer in the front yard. Max feels as if he is the best goalie in the world.
Ill be doing football updates on a regular basis now. Right now I'm in desperate need for coaches. If anyone out there would be able to help or know someone who could. please have them call me on my cell: 530-613-1054. We start practice Monday the 17th.
Talk to you soon.
That's been nice. We didn't spend a night together for 5 weeks.
So I saw Jenny at the store in town and she got after me for not posting any more updates. I said I would and she threatened to hold me to that. So here are updates.
Coming home has been real real cool. The folks around town have worked so hard to make our house ready for Max to come home. We have a lawn for crying out loud! And Sprinklers!
Max is doing better and better just being home and moving around. His numbers keep doing great. His blood draw this morning shows that his platelets have actually reached the level where he is allowed to ride his bike or scooter, so that is a nice step.
He has tons of meds every day. Like 7 pills in the morning, 2 in the afternoon, 5 at dinner, then 2 at 1:30 in the morning. Yep. but hey.
A big step was this past Thursday (I think)- Max got his pick line out of his arm. He had the tubes in there and Jamie and I were doing the blood draws every Monday and Thursday mornings then driving the vials of blood down to roseville. We also had to hook him up to IV fluids at night. A bit of an inconvenience, but that is gone now. That night Max said the dinner prayer and he thanked God for "the best- ... one of the best days of my life" for getting it out.
People have asked about Sam- He is fine. Literally nothing slowed him down after that day. And Baylor is good, we've all settled into our home routine. We have to stay home way more than we normally would, but that is about it. Max wears a mask when he goes outside. We play soccer in the front yard. Max feels as if he is the best goalie in the world.
Ill be doing football updates on a regular basis now. Right now I'm in desperate need for coaches. If anyone out there would be able to help or know someone who could. please have them call me on my cell: 530-613-1054. We start practice Monday the 17th.
Talk to you soon.
Sunday, July 19, 2009
Going Home
It will be an even 5 weeks. We're going home tomorrow- Monday July 20th. That's 35 days and 34 nights down here.
Max will still have his share of upheaval and uncomfort- but at least we'll have it at home.
I hope to continue to post things but it may not interest many of you any more. I was wanting to do another movie with Max, but it looks like that won't happen down here today.
Thanks to everyone for their help, their prayers, their time and their love for our family.
We will never forget any of it. I will never forget.
Max will still have his share of upheaval and uncomfort- but at least we'll have it at home.
I hope to continue to post things but it may not interest many of you any more. I was wanting to do another movie with Max, but it looks like that won't happen down here today.
Thanks to everyone for their help, their prayers, their time and their love for our family.
We will never forget any of it. I will never forget.
Sunday, July 12, 2009
First Movie
This has been something that I have been wanting to do with Max for a while- then especially during our hospital stay.
Of course the quality is low, and the final movie is near totally pointless, but that was the fun of it. I tried to talk him into making a movie with the 'guys' playing a football play. But he was having none of that. Here it is. I really like the credits and just watching Max watch himself in the webcam, more than the movie itself.
Of course the quality is low, and the final movie is near totally pointless, but that was the fun of it. I tried to talk him into making a movie with the 'guys' playing a football play. But he was having none of that. Here it is. I really like the credits and just watching Max watch himself in the webcam, more than the movie itself.
setting a go home date
Dr Horne says everything is going great. Max needs to start moving around and eating. His oxygen is great. She thinks that we could be going home as early as thursday or Friday- as late as Monday or Tuesday.
Kevin Haycraft has brought his tractor over to level out the yard for Max's arrival home. There is a small army of helpers. Jenni Fawcettt and the boys (Zac and Chris), Dillon Potter and his mom Stevie, Tyler Furness and Super Dave, Gage and Middleton are there.
Pretty cool.
I may have them dig me a pool while they are there. At least a small football shaped jacuzi.
Kevin Haycraft has brought his tractor over to level out the yard for Max's arrival home. There is a small army of helpers. Jenni Fawcettt and the boys (Zac and Chris), Dillon Potter and his mom Stevie, Tyler Furness and Super Dave, Gage and Middleton are there.
Pretty cool.
I may have them dig me a pool while they are there. At least a small football shaped jacuzi.
Saturday, July 11, 2009
come home prep
well, we really still don't know when exactly we'll be coming home, but they've started talking to us about discharge. leaving the hospital kind of discharge. It may be a week, it may be two weeks, but it's in the conversation- and that's nice.
Sunday they'll do a Gaft analysis to see how many of Sammy's cells are in there. If his white cells are half as intrusive as that child is- then we're golden.
So Discharge Stuf:
Max will have to wear a mask whenever he goes outside for the next 6 months or more. We have to steam clean our carpets, and any place he would want to go would have to have just steam cleaned their carpets. Limits the choices.
No swimming for 6 months to a year.
Also, dust is bad for him- real bad. And if you've seen our "yard" you would see the problem at hand. It's all dirt. We've been working this summer to pull up all the weeds in order to seed, but now we have to go sod. I think we'll throw gravel down on the side of the house to keep the dust down. We'll see, and we'll figure it out.
Right now it's 11:52 PM. Max just got up feeling bad, and we rushed to the bathroom. His blood pressure is good and he has no fever right now, and we'll try to tuck back to sleep.
I think he'll be feeling better tomorrow. One nurse said she often notices an every other day pattern with BMT kids in the recovery process.
Still, I'm happy to be dealing with all these issues. It's really a good thing.
Sunday they'll do a Gaft analysis to see how many of Sammy's cells are in there. If his white cells are half as intrusive as that child is- then we're golden.
So Discharge Stuf:
Max will have to wear a mask whenever he goes outside for the next 6 months or more. We have to steam clean our carpets, and any place he would want to go would have to have just steam cleaned their carpets. Limits the choices.
No swimming for 6 months to a year.
Also, dust is bad for him- real bad. And if you've seen our "yard" you would see the problem at hand. It's all dirt. We've been working this summer to pull up all the weeds in order to seed, but now we have to go sod. I think we'll throw gravel down on the side of the house to keep the dust down. We'll see, and we'll figure it out.
Right now it's 11:52 PM. Max just got up feeling bad, and we rushed to the bathroom. His blood pressure is good and he has no fever right now, and we'll try to tuck back to sleep.
I think he'll be feeling better tomorrow. One nurse said she often notices an every other day pattern with BMT kids in the recovery process.
Still, I'm happy to be dealing with all these issues. It's really a good thing.
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