January 4th, 2009
I am guessing you all have been wondering if we fell off the face of the earth. Well, not exactly. We've
just fallen into everyday life. Levi has been doing great. Our weekly trips to Cincinnati haven't been too
terrible. Well, except for the one we made on the 23rd, but that is a whole nother story--ice, rain,
accidents, Christmas traffic, need I say more. Levi and my 2 1/2 journey turned into a 6 hour
nightmare. We finally made it home and in one piece. I guess we should be thankful for that. That day
was just one of those days nuthin' goes right, ya' know? Anyway the scopes have looked good each
time and we have been slowly going down on the steroids. He has a scope Tuesday and if it still looks
good, then he should be taken completely off. Then he has one more scope scheduled next week.
Then he shouldn't have to have any more for a while. His labs have been set up for every other week
so he has been 2 weeks without getting stuck. YAY!
--The little rascal has been walking like you wouldn't believe. There ain't nothing stopping him
now...except for that darn backpack that he has to be attached to for feeds. We praise our 7-hour
window we have free from the cords and extra luggage of the backpack. Levi also has clinic this week
and I cross my fingers that he gets a little more time off the thing. He's been eating really good and
drinking at least 10 ounces a day. He is just amazing to watch. He has so much energy and he's always
happy. I think he's hitting the terrible 2's a little early though. He bites, pinches, pulls hair and wollers all
over anybody that is in his way... and sometimes just for the heck of it. I love it. Things were so different
a year ago. I continue to thank God every day for this miracle he's blessed us with. Levi turned 18
months on the 1st of this month. He will be 10 months post transplant on the 7th. Time flies. Only 2
more months until the big 1 year anniversary. This time is a blessing for us, but I can't help but wonder
about how the family of the donor is dealing with this holiday season without their little one to share it
with. Please keep that family in your prayers. Without them, our lives would be totally different.
--Levi did scare me a bit Thursday night. He got a low grade temp. I gave him some tylenol nad
watched him overnight. I called the coordinator Friday morning, but they said to just keep an eye on it.
The temp never got over 100.4 and that was Thursday night. He ran a slight temp Friday but it was
only around 99. He hasn't had one since so I guess, for once, that fever was just ...A Fever. It's nice to
say that. Especially since most fevers are just the beginning of a long hospital stay.
--I think that's all for now. I'll try to update more often, but school is starting next week..for me, that is.
Yep, for those of you who didn't know, I am starting back to school this semester. I couldn't get into the
program this semester, but should be able to in the fall. My major is nursing, of course. I am anxious
and excited. I worry about leaving Levi, but I look forward to having a life outside of this house for a
change. I have been a full time mom and caretaker of Levi for a year and a half. School life will
definitely be an adjustment, but I tell myself that if i can deal with everything God has thrown at me over
that year and a half, I can surely deal with college life.
--Everyone take care. I hope the Christmas holiday and the New Year went well for all. God bless you
guys. Love ya.----Laurie
---------------------------------------------------------------------------------------
January 16th, 2009
Everything has been going good. Levi has been getting scoped once a week and he is almost completely off the steroids. He should stop
them on the 26th then he will have one more scope on the 2nd of Feb. We have clinic next week and we are supposed to be discussing
the ostomy reversal since we are fast approaching his 1 year anniversary. I'll give you more details about that when I learn more. They
have to do some tests to make sure everything is ok in there like a barium enema and an upper GI to name a couple.
--I started school this week, for the first time in 6 years. I was so nervous, but after being in the class a couple times, the nerves have
faded. I really hated leaving Levi. I had been with him 24/7 since he was born with the exception of a few hours here and there so leaving
home at 6:30 am and not getting home until around 7pm this week (just Tues and Thur) have been the longest I've been away from him. I
only called twice to check on him and he had done fine. My sis-in-law Beth has taken on the awesome job of babysitting him. He sure
broke her in the 1st day. He pulled his ostomy bag off twice! I had a feeling he would do something like that. She handled it very well and
Levi really likes her and he loves all his cousins being around. He has arrived at the top of the mean list, though, on account of his biting,
pulling hair, pinching, etc. He works them all over a few times each. Out of 10 grandkids, he's #1 on the meanness list. Hopefully he'll get
out of this stage soon, but I guess he's making up for lost time. I sure did miss the little guy, and the other 3 for that matter, but it was
sooooo nice to have some time away from home for me.
--With the addition of school and homework to my already hectic life, updates may be scarce for a while until I get a system going. Thanks
for checking in. You know we love you all. --Laurie
-----------------------------------------------------------------------------------------
January 23rd, 2009
Levi had clinic this week instead of a scope. He didn't have to be there until 1pm so we didn't have to leave quite so early. We discussed
reversing the ostomy. They have to do those tests I talked about first, but we have a tentative date on March 10th. That is on Robin and
my spring break. They said as long as he didn't acquire an infection while he was in the hospital he would only be in about a week.
Hopefully that will be all so Robin or I won't have to miss any school. I will be so glad for him to be rid of that thing. It really bothers him and
it is frustrating to me. He has an appointment next Wednesday for those other tests. He also has labs on Monday and we can stop the
steroid on Monday.
--They said his weight gain was really good so they dropped another hour off his feeds. That means he is eating enough to gain a little on
his own. They will weight him again on the 2nd when he has his next scope to see if his weight gain is still good. If it is, then they may drop
even more off his feeds. This will also make him hungrier so he will eat more, hopefully. I would love to get rid of the g tube as well. He is
on his way to becoming self dependent!
--He's still as mean as ever, but I think it is just a phase he will grow out of. Toby went through it about this same age.
-- Levi is coming up on his 1 year post transplant anniversary. (322 days to be exact!!) Please keep the donor family in your prayers. This
time a year will always be a hard time of year for them. As we are celebrating, remember they will be grieving. Levi is alive because of
them. I am trying to work up the nerve and the thoughts to write the family. It is hard to put into words how grateful I am to them. And how
do you tell them how happy you are that your baby is alive without reminding them how sad they are because there baby is gone? It is
something I want to do, but I am still working on it.
--Everyone take care. School is going pretty good so far. Love you all. And oh yeah, it's my birthday tomorrow. My last year of 20's. I'll be
29.--Laurie
-----------------------------------------------------------------------------------------
January 31st 2009
Well, January has passed by faster than I expected. Levi has been doing excellent. He had labs on Monday and all looked good except
his prograf level was lower than they wanted it so I increased his dose from 0.7mg 2x a day to 1 mg 2 x a day. All the other labs were fine.
He was supposed to go to Cincinnati on Wednesday for an upper GI and a stomagram, but the weather encouraged us to cancel our
appointment and reschedule. He is supposed to have another scope on Monday. Hopefully the weather will cooperate and the roads will
be safe to travel. The boys only had school 2 days this week and Eastern KY University was cancelled all week so Robin and I got a break
from classes this week. We didn't get hit too hard here in Somerset, but in Richmond where EKU is, they got hit pretty hard with ice and
power outages.
--The boys got their first day to play in the snow this week in a long time. It was Levi's first time ever and I doubt Toby remembered his last
time playing in the snow. They all had a blast. We only stayed out about 45 minutes, but it was well worth the mess afterwards to see the
fun they had, especially Levi. He didn't know what to think. It was a very memorable day. We tried to make a snowman, but the snow
wasn't the kind that packs very good so that plan was aborted. Jacob and Brandon made snow angels.
--I had a very good birthday Robin and I went to Gatlinburg. We went shopping and ate at a nice restauraunt and took some pictures by
a pretty stream. They turned out nice. It was really good to be able to spend time away from the boys. A person needs "me time" every
now and then.
--Well, I'll update again when I have something to update you all on. Oh yeah. My Brandon made the honor roll this grading period. I am
so proud. Jacob is also doing better. All is well in Goff-land.
--Love you guys......Laurie
I am guessing you all have been wondering if we fell off the face of the earth. Well, not exactly. We've
just fallen into everyday life. Levi has been doing great. Our weekly trips to Cincinnati haven't been too
terrible. Well, except for the one we made on the 23rd, but that is a whole nother story--ice, rain,
accidents, Christmas traffic, need I say more. Levi and my 2 1/2 journey turned into a 6 hour
nightmare. We finally made it home and in one piece. I guess we should be thankful for that. That day
was just one of those days nuthin' goes right, ya' know? Anyway the scopes have looked good each
time and we have been slowly going down on the steroids. He has a scope Tuesday and if it still looks
good, then he should be taken completely off. Then he has one more scope scheduled next week.
Then he shouldn't have to have any more for a while. His labs have been set up for every other week
so he has been 2 weeks without getting stuck. YAY!
--The little rascal has been walking like you wouldn't believe. There ain't nothing stopping him
now...except for that darn backpack that he has to be attached to for feeds. We praise our 7-hour
window we have free from the cords and extra luggage of the backpack. Levi also has clinic this week
and I cross my fingers that he gets a little more time off the thing. He's been eating really good and
drinking at least 10 ounces a day. He is just amazing to watch. He has so much energy and he's always
happy. I think he's hitting the terrible 2's a little early though. He bites, pinches, pulls hair and wollers all
over anybody that is in his way... and sometimes just for the heck of it. I love it. Things were so different
a year ago. I continue to thank God every day for this miracle he's blessed us with. Levi turned 18
months on the 1st of this month. He will be 10 months post transplant on the 7th. Time flies. Only 2
more months until the big 1 year anniversary. This time is a blessing for us, but I can't help but wonder
about how the family of the donor is dealing with this holiday season without their little one to share it
with. Please keep that family in your prayers. Without them, our lives would be totally different.
--Levi did scare me a bit Thursday night. He got a low grade temp. I gave him some tylenol nad
watched him overnight. I called the coordinator Friday morning, but they said to just keep an eye on it.
The temp never got over 100.4 and that was Thursday night. He ran a slight temp Friday but it was
only around 99. He hasn't had one since so I guess, for once, that fever was just ...A Fever. It's nice to
say that. Especially since most fevers are just the beginning of a long hospital stay.
--I think that's all for now. I'll try to update more often, but school is starting next week..for me, that is.
Yep, for those of you who didn't know, I am starting back to school this semester. I couldn't get into the
program this semester, but should be able to in the fall. My major is nursing, of course. I am anxious
and excited. I worry about leaving Levi, but I look forward to having a life outside of this house for a
change. I have been a full time mom and caretaker of Levi for a year and a half. School life will
definitely be an adjustment, but I tell myself that if i can deal with everything God has thrown at me over
that year and a half, I can surely deal with college life.
--Everyone take care. I hope the Christmas holiday and the New Year went well for all. God bless you
guys. Love ya.----Laurie
---------------------------------------------------------------------------------------
January 16th, 2009
Everything has been going good. Levi has been getting scoped once a week and he is almost completely off the steroids. He should stop
them on the 26th then he will have one more scope on the 2nd of Feb. We have clinic next week and we are supposed to be discussing
the ostomy reversal since we are fast approaching his 1 year anniversary. I'll give you more details about that when I learn more. They
have to do some tests to make sure everything is ok in there like a barium enema and an upper GI to name a couple.
--I started school this week, for the first time in 6 years. I was so nervous, but after being in the class a couple times, the nerves have
faded. I really hated leaving Levi. I had been with him 24/7 since he was born with the exception of a few hours here and there so leaving
home at 6:30 am and not getting home until around 7pm this week (just Tues and Thur) have been the longest I've been away from him. I
only called twice to check on him and he had done fine. My sis-in-law Beth has taken on the awesome job of babysitting him. He sure
broke her in the 1st day. He pulled his ostomy bag off twice! I had a feeling he would do something like that. She handled it very well and
Levi really likes her and he loves all his cousins being around. He has arrived at the top of the mean list, though, on account of his biting,
pulling hair, pinching, etc. He works them all over a few times each. Out of 10 grandkids, he's #1 on the meanness list. Hopefully he'll get
out of this stage soon, but I guess he's making up for lost time. I sure did miss the little guy, and the other 3 for that matter, but it was
sooooo nice to have some time away from home for me.
--With the addition of school and homework to my already hectic life, updates may be scarce for a while until I get a system going. Thanks
for checking in. You know we love you all. --Laurie
-----------------------------------------------------------------------------------------
January 23rd, 2009
Levi had clinic this week instead of a scope. He didn't have to be there until 1pm so we didn't have to leave quite so early. We discussed
reversing the ostomy. They have to do those tests I talked about first, but we have a tentative date on March 10th. That is on Robin and
my spring break. They said as long as he didn't acquire an infection while he was in the hospital he would only be in about a week.
Hopefully that will be all so Robin or I won't have to miss any school. I will be so glad for him to be rid of that thing. It really bothers him and
it is frustrating to me. He has an appointment next Wednesday for those other tests. He also has labs on Monday and we can stop the
steroid on Monday.
--They said his weight gain was really good so they dropped another hour off his feeds. That means he is eating enough to gain a little on
his own. They will weight him again on the 2nd when he has his next scope to see if his weight gain is still good. If it is, then they may drop
even more off his feeds. This will also make him hungrier so he will eat more, hopefully. I would love to get rid of the g tube as well. He is
on his way to becoming self dependent!
--He's still as mean as ever, but I think it is just a phase he will grow out of. Toby went through it about this same age.
-- Levi is coming up on his 1 year post transplant anniversary. (322 days to be exact!!) Please keep the donor family in your prayers. This
time a year will always be a hard time of year for them. As we are celebrating, remember they will be grieving. Levi is alive because of
them. I am trying to work up the nerve and the thoughts to write the family. It is hard to put into words how grateful I am to them. And how
do you tell them how happy you are that your baby is alive without reminding them how sad they are because there baby is gone? It is
something I want to do, but I am still working on it.
--Everyone take care. School is going pretty good so far. Love you all. And oh yeah, it's my birthday tomorrow. My last year of 20's. I'll be
29.--Laurie
-----------------------------------------------------------------------------------------
January 31st 2009
Well, January has passed by faster than I expected. Levi has been doing excellent. He had labs on Monday and all looked good except
his prograf level was lower than they wanted it so I increased his dose from 0.7mg 2x a day to 1 mg 2 x a day. All the other labs were fine.
He was supposed to go to Cincinnati on Wednesday for an upper GI and a stomagram, but the weather encouraged us to cancel our
appointment and reschedule. He is supposed to have another scope on Monday. Hopefully the weather will cooperate and the roads will
be safe to travel. The boys only had school 2 days this week and Eastern KY University was cancelled all week so Robin and I got a break
from classes this week. We didn't get hit too hard here in Somerset, but in Richmond where EKU is, they got hit pretty hard with ice and
power outages.
--The boys got their first day to play in the snow this week in a long time. It was Levi's first time ever and I doubt Toby remembered his last
time playing in the snow. They all had a blast. We only stayed out about 45 minutes, but it was well worth the mess afterwards to see the
fun they had, especially Levi. He didn't know what to think. It was a very memorable day. We tried to make a snowman, but the snow
wasn't the kind that packs very good so that plan was aborted. Jacob and Brandon made snow angels.
--I had a very good birthday Robin and I went to Gatlinburg. We went shopping and ate at a nice restauraunt and took some pictures by
a pretty stream. They turned out nice. It was really good to be able to spend time away from the boys. A person needs "me time" every
now and then.
--Well, I'll update again when I have something to update you all on. Oh yeah. My Brandon made the honor roll this grading period. I am
so proud. Jacob is also doing better. All is well in Goff-land.
--Love you guys......Laurie
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