Friday, November 28, 2008
Whew, Thanksgiving is over and way too many calorie's were consumed =} It was so nice though. No hussle bussle, dressing the kids in there Sunday best, just us, Football and yummy food.
We have made some wonderful strides these past few days, well since our last hospital stay, yes we were in the hospital last week for a few says. Alec spiked a fever and was going through steroid withdrawls so Dr. Atlas felt it was best to put him back on Decadrone for the time being. The radiation necrosis concern is still on the table so for now, we have to keep the steroids on board.
The really good news is Alec's counts really went up, not talking about just the white blood count which will go up with the steroids alone but his lymphocytes is at 1.01 the highest its been EVER!! The steroids wouldn't effect that well it would but heading in the opposite direction. Thank you holistic medicine!!
Other than that we are doing ALOT more walking. He walked all the way into clinic today with his walker, and with help. But we did it, he did it! And today he ate lunch unpureed. straight turkey and cheese rolls, chewed and swallowed, YAY!!! He is amazing and getting better and better everyday, it's like he's coming back. It's really hard to put into words; but it's truly breath taking.
The count down is on, he is schedule for the port to come out Dec. 8th, yay!!!! which means what you ask, when Alec spikes a fever no more running into New Hyde Park, not that I mind, I would rather; but he can just be a kid sick.
Well as always things to do. Keep praying, your prayers and mine are being answered.
xoxox Amy
We have made some wonderful strides these past few days, well since our last hospital stay, yes we were in the hospital last week for a few says. Alec spiked a fever and was going through steroid withdrawls so Dr. Atlas felt it was best to put him back on Decadrone for the time being. The radiation necrosis concern is still on the table so for now, we have to keep the steroids on board.
The really good news is Alec's counts really went up, not talking about just the white blood count which will go up with the steroids alone but his lymphocytes is at 1.01 the highest its been EVER!! The steroids wouldn't effect that well it would but heading in the opposite direction. Thank you holistic medicine!!
Other than that we are doing ALOT more walking. He walked all the way into clinic today with his walker, and with help. But we did it, he did it! And today he ate lunch unpureed. straight turkey and cheese rolls, chewed and swallowed, YAY!!! He is amazing and getting better and better everyday, it's like he's coming back. It's really hard to put into words; but it's truly breath taking.
The count down is on, he is schedule for the port to come out Dec. 8th, yay!!!! which means what you ask, when Alec spikes a fever no more running into New Hyde Park, not that I mind, I would rather; but he can just be a kid sick.
Well as always things to do. Keep praying, your prayers and mine are being answered.
xoxox Amy
Wednesday, November 12, 2008
TV Debut
Just got word Alec will be making his TV debut on NewYork TV55 at 11am this Saturday. Other than that we are doing well, school is setting in. Well mornings are crazy trying to get the boys already and of course I am driving him. He gets tired easily but today he really perked up =) Well hope all is well.
xoxox
Amy
xoxox
Amy
Tuesday, November 4, 2008
Some recent pictures
Of course we have Halloween in there, can you guess who Alec was, LOL A picture of Dr. Hynes and Ms. Moran making a visit to our house to say hi to Alec. This was Dr.Hynes day as our school principal and he wanted to say goodbye to Alec. Our school, Clayton Huey is amazing and we have been so lucky to live in a district with caring and loving teachers and school personnel. Alec's teacher this year is Ms. Buccos, aka Ms. B Alec has a hard time pronouncing her name. She is warm and gentle and caters to Alec. She understands him pretty well even considering his speech impairment.
I am working closely with Ms. Henninger to get Alec a communications device for school. So far it's down to the Tango, I think it is the best for him. He actually was talking about in all night. It will take time for him to learn how to use it, but I feel it's the best choice.
Other pictures of course is Kevin making pumpkin pie with his classmates. And then you see our hospital friends from a couple of weeks ago, Ms. Alyssa, Jan and Ms. Meg talking to Alec's classmates about Alec returning to school and how he is just like them.
Alec has a modified day, he is only in school a short time and gets all his pt/pt/speech at home still. His immune system is still low and he is fatigued alot so this is best for him right now.
He is doing well on his bipap machine. That took alot of tweking fitting that in his day. His pulmonary Dr. recommended it over night, well he hydrates overnight so no good, so when he naps during the day and at night for a couple of hours before I drop the ng tube he is on it. His diaphramn is pushing up into his lungs so the bipap machine pushes pressure in while he is breathing to exercise the diaphram so to speak. He still needs hydration over night his recent MBS showed he does aspirate thin liquids still but his swallowing is improving everyday. I even stopped his robinal, drooling medicine and he is doing well. Occasional drool drips but so much better.
Well I gotta run ENT and then off to swallow therapy.
Keep the faith,
Love,
Amy
I am working closely with Ms. Henninger to get Alec a communications device for school. So far it's down to the Tango, I think it is the best for him. He actually was talking about in all night. It will take time for him to learn how to use it, but I feel it's the best choice.
Other pictures of course is Kevin making pumpkin pie with his classmates. And then you see our hospital friends from a couple of weeks ago, Ms. Alyssa, Jan and Ms. Meg talking to Alec's classmates about Alec returning to school and how he is just like them.
Alec has a modified day, he is only in school a short time and gets all his pt/pt/speech at home still. His immune system is still low and he is fatigued alot so this is best for him right now.
He is doing well on his bipap machine. That took alot of tweking fitting that in his day. His pulmonary Dr. recommended it over night, well he hydrates overnight so no good, so when he naps during the day and at night for a couple of hours before I drop the ng tube he is on it. His diaphramn is pushing up into his lungs so the bipap machine pushes pressure in while he is breathing to exercise the diaphram so to speak. He still needs hydration over night his recent MBS showed he does aspirate thin liquids still but his swallowing is improving everyday. I even stopped his robinal, drooling medicine and he is doing well. Occasional drool drips but so much better.
Well I gotta run ENT and then off to swallow therapy.
Keep the faith,
Love,
Amy
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