| June 09 |
June 5th, 2009
Levi has been doing really well except for his little raw hiney. I've been doing my best to keep it under
control, but it's a task. They gave us some new cream at clinic Wednesday and it seems to be improving a
little.
--We went to clinic Wednesday. They think he's doing really well. I had written down everything he's eaten
in the past week and gave that to them. He had lost weight since the last visit so they want to wait until we
come back next time before they start working on the bolus feeds. They think the weight loss is just from
the surgery and some of the loose stools he's been having. We are supposed to go back in 3 weeks. The
surgeon said his staples could come out next week, but we wouldn't have to come back up there for it.
They said we could find someone around here to take them out. Robin said he takes them out all the time
at work, so Tuesday he is going to take them out.
--That's about it. We've been enjoying the wonderful weather. Robin got a new job and he's been having
weeknights off, which has been nice. He is still working at the same place, but he is now the Occupational
Medicine Supervisor/Director (I'm not sure what the exact title is --They do drug screens and stuff like
that). He is still working some doing old job, but when they get a replacement for him, he will work Mon-Fri
8:30-5:30, off holidays and weekends. That's much better than his schedule before. He worked 12 hour
shifts which left little time to spend with me and the kids.
--Everyone take care. Happy early birthday to my baby sister, Rachel. She'll be 19 on Tuesday.
--Laurie
-------------------------------------------------------------------
June 16th, 2009
Everything's still going good around here. Robin has started his new job, so we've been enjoying our
evenings with daddy home. He has been working more hours lately, though until his replacement is
trained. This past weekend was his first days off in over a week. So we made it extra special. We went to
Cumberland Falls, and to Laurel Lake, just travelling everywhere. It was so much fun for all of us to be out
as a family. We took soooo many pictures, I am going to post a separate page for you guys to see. I
couldn't pick just a few to post on this page alone.
--We've got a lot going on this months and next. This weekend (Sat) is Jacob's 6th Birthday! (Happy
Birthday Jake!) We are taking him to a Dinosaur somewhere over next to Mammoth Cave. His party will be
Friday evening when Robin gets off with cake and ice cream.
-- Next weekend we are going to Cincinnati's Coney Island. They have an annual picnic for the small bowel
and liver recipients and those on the waiting list. It will be cool to meet some other families like ourselves. It
is a small amusement park with fair rides so the boys should have a good time.
--Then, the following week is Levi's 2nd birthday!!! Wow! It's hard to believe it's been that long. He has
come so far! God has truly blessed our family! All I can say is WOW!
--Then, toward the end of July (about the 20th), we are going to head to Florida to stay about a week!
THAT will be AWESOME! I am totally stoked about it. I love the beach and I am sure Levi and the other
boys will too. It's been over 2 years since we've been able to take a family vacation anywhere. We need
and deserve it!
--We have a clinic appointment next week on Wednesday and he has labs on the 1st (his birthday :-( so I
am taking him a day early- the 30th-so he don't have to get poked on his birthday).
--That's about it. Everyone take care.
--HUGS~ Laurie
--------------------------------------------------------------------------
June 25th, 2009
Levi had an awesome clinic visit yesterday. He had gained 10-11oz and grew about 2 inches since 2
months ago. WOW! They almost didn't believe the height growth. Me either! They want him to start trying
to drink Pediasure. Until they know for sure if he's gonna like it, they want to leave the Elecare running
through his feeds. They cut another 2 hours off his feeding schedule because they figured he is getting
about 450 calories from eating. So now he is off from his feeds 10 hrs instead of 8, which is GREAT! They
also replaced his G-tube with a much better one. He had what's called a Mic. It has a tube that hangs
down about a half of a foot even when he's not hooked up. This one is called a Mic-Key Button. It looks
like, well, a button. It just barely sticks out when he's not hooked up. It will be much nicer for him. It won't be
hanging down in his way and I won't have to be sticking it down in his pants. I'll get a picture of it later and
post it on here sometime in the near future.
--The doc said if he does really good drinking the Pediasure, then he may be getting rid of the G-tube all
together before long. Then we will have to figure out how to give his meds orally. They did say that when
they do remove it, because his stomach is a little prolapsed (sticking out) of the skin, he will have to have
a small surgical procedure to fix it. He said it was nothing major, just a little outpatient type thing. They also
cut one of his meds in half because his electrolytes have been so good.
--They went over some of his annual labs that they got last time and they seemed really impressed at how
great they were.
--I had to take him to the pediatrician this past Monday. His G-Tube has been really sensitive and over the
weekend it started having pus-like drainage coming from around it. He started him on another antibiotic
and gave him some ointment to put on it. It looks a little better, but it's still hurting him. I can barely get
close enough to put the ointment on. He's only been on the antibiotic for a couple days, though, so maybe
it will start improving more in the next few days.
--I was so happy to start some changes with his feeds. It's about time. He eats like a little pig all the time. I
will be so glad when the tube is gone. Then the only thing that we have to worry about is his medicine and
he's down to only 5 now.
--He's starting to talk a lot more now. He has a big ol' tale he says about getting his staples out. When you
ask him about his belly, he gives this big ol' long speech about "daddy" and staples and "out" ,"on bed".
Then he does this fake cry to show you it made him cry. I'll have to get it on video. It will crack you up.
-- He's still being a bully, of course. Now, little Maddi drops the toy she has and runs whenever she sees
him coming toward her. I'm hoping it's just a phase and he gets better. They're all afraid of him. I'm afraid
he'll get worse before he gets better, though. He turns 2 next week and you know what that means!
Terrible 2s!! Pray for me. lol
--I believe that's all. Wish Levi a Happy Birthday. He'll be 2 on the 1st of July! We are just having a small
party with cake and ice cream next Wednesday for close family. This will be his 1st birthday not in the
hospital and his first that he can eat his cake. We didn't even get one last year, but he got one for his
Welcome home party last August. So it will be a milestone, for sure. I'll try to be back on and update before
then. We are supposed to go to Coney Island Saturday for the transplant picnic, so I'll try to let you all
know how that goes. Take care. We love you all.
--God Bless every one of you. Without you love, support and prayers, Levi may not be where he is today.
God has kept Levi in his care and saved him for some reason. I hope he is able to use his story to help
others find God or get through a tough time. There has to be some reason for the journey we've been on.
I think we are just yet to find out what that is. Love you guys. Thanks for being apart of our journey. Great
things are yet to come.
---Laurie :-)
Levi has been doing really well except for his little raw hiney. I've been doing my best to keep it under
control, but it's a task. They gave us some new cream at clinic Wednesday and it seems to be improving a
little.
--We went to clinic Wednesday. They think he's doing really well. I had written down everything he's eaten
in the past week and gave that to them. He had lost weight since the last visit so they want to wait until we
come back next time before they start working on the bolus feeds. They think the weight loss is just from
the surgery and some of the loose stools he's been having. We are supposed to go back in 3 weeks. The
surgeon said his staples could come out next week, but we wouldn't have to come back up there for it.
They said we could find someone around here to take them out. Robin said he takes them out all the time
at work, so Tuesday he is going to take them out.
--That's about it. We've been enjoying the wonderful weather. Robin got a new job and he's been having
weeknights off, which has been nice. He is still working at the same place, but he is now the Occupational
Medicine Supervisor/Director (I'm not sure what the exact title is --They do drug screens and stuff like
that). He is still working some doing old job, but when they get a replacement for him, he will work Mon-Fri
8:30-5:30, off holidays and weekends. That's much better than his schedule before. He worked 12 hour
shifts which left little time to spend with me and the kids.
--Everyone take care. Happy early birthday to my baby sister, Rachel. She'll be 19 on Tuesday.
--Laurie
-------------------------------------------------------------------
June 16th, 2009
Everything's still going good around here. Robin has started his new job, so we've been enjoying our
evenings with daddy home. He has been working more hours lately, though until his replacement is
trained. This past weekend was his first days off in over a week. So we made it extra special. We went to
Cumberland Falls, and to Laurel Lake, just travelling everywhere. It was so much fun for all of us to be out
as a family. We took soooo many pictures, I am going to post a separate page for you guys to see. I
couldn't pick just a few to post on this page alone.
--We've got a lot going on this months and next. This weekend (Sat) is Jacob's 6th Birthday! (Happy
Birthday Jake!) We are taking him to a Dinosaur somewhere over next to Mammoth Cave. His party will be
Friday evening when Robin gets off with cake and ice cream.
-- Next weekend we are going to Cincinnati's Coney Island. They have an annual picnic for the small bowel
and liver recipients and those on the waiting list. It will be cool to meet some other families like ourselves. It
is a small amusement park with fair rides so the boys should have a good time.
--Then, the following week is Levi's 2nd birthday!!! Wow! It's hard to believe it's been that long. He has
come so far! God has truly blessed our family! All I can say is WOW!
--Then, toward the end of July (about the 20th), we are going to head to Florida to stay about a week!
THAT will be AWESOME! I am totally stoked about it. I love the beach and I am sure Levi and the other
boys will too. It's been over 2 years since we've been able to take a family vacation anywhere. We need
and deserve it!
--We have a clinic appointment next week on Wednesday and he has labs on the 1st (his birthday :-( so I
am taking him a day early- the 30th-so he don't have to get poked on his birthday).
--That's about it. Everyone take care.
--HUGS~ Laurie
--------------------------------------------------------------------------
June 25th, 2009
Levi had an awesome clinic visit yesterday. He had gained 10-11oz and grew about 2 inches since 2
months ago. WOW! They almost didn't believe the height growth. Me either! They want him to start trying
to drink Pediasure. Until they know for sure if he's gonna like it, they want to leave the Elecare running
through his feeds. They cut another 2 hours off his feeding schedule because they figured he is getting
about 450 calories from eating. So now he is off from his feeds 10 hrs instead of 8, which is GREAT! They
also replaced his G-tube with a much better one. He had what's called a Mic. It has a tube that hangs
down about a half of a foot even when he's not hooked up. This one is called a Mic-Key Button. It looks
like, well, a button. It just barely sticks out when he's not hooked up. It will be much nicer for him. It won't be
hanging down in his way and I won't have to be sticking it down in his pants. I'll get a picture of it later and
post it on here sometime in the near future.
--The doc said if he does really good drinking the Pediasure, then he may be getting rid of the G-tube all
together before long. Then we will have to figure out how to give his meds orally. They did say that when
they do remove it, because his stomach is a little prolapsed (sticking out) of the skin, he will have to have
a small surgical procedure to fix it. He said it was nothing major, just a little outpatient type thing. They also
cut one of his meds in half because his electrolytes have been so good.
--They went over some of his annual labs that they got last time and they seemed really impressed at how
great they were.
--I had to take him to the pediatrician this past Monday. His G-Tube has been really sensitive and over the
weekend it started having pus-like drainage coming from around it. He started him on another antibiotic
and gave him some ointment to put on it. It looks a little better, but it's still hurting him. I can barely get
close enough to put the ointment on. He's only been on the antibiotic for a couple days, though, so maybe
it will start improving more in the next few days.
--I was so happy to start some changes with his feeds. It's about time. He eats like a little pig all the time. I
will be so glad when the tube is gone. Then the only thing that we have to worry about is his medicine and
he's down to only 5 now.
--He's starting to talk a lot more now. He has a big ol' tale he says about getting his staples out. When you
ask him about his belly, he gives this big ol' long speech about "daddy" and staples and "out" ,"on bed".
Then he does this fake cry to show you it made him cry. I'll have to get it on video. It will crack you up.
-- He's still being a bully, of course. Now, little Maddi drops the toy she has and runs whenever she sees
him coming toward her. I'm hoping it's just a phase and he gets better. They're all afraid of him. I'm afraid
he'll get worse before he gets better, though. He turns 2 next week and you know what that means!
Terrible 2s!! Pray for me. lol
--I believe that's all. Wish Levi a Happy Birthday. He'll be 2 on the 1st of July! We are just having a small
party with cake and ice cream next Wednesday for close family. This will be his 1st birthday not in the
hospital and his first that he can eat his cake. We didn't even get one last year, but he got one for his
Welcome home party last August. So it will be a milestone, for sure. I'll try to be back on and update before
then. We are supposed to go to Coney Island Saturday for the transplant picnic, so I'll try to let you all
know how that goes. Take care. We love you all.
--God Bless every one of you. Without you love, support and prayers, Levi may not be where he is today.
God has kept Levi in his care and saved him for some reason. I hope he is able to use his story to help
others find God or get through a tough time. There has to be some reason for the journey we've been on.
I think we are just yet to find out what that is. Love you guys. Thanks for being apart of our journey. Great
things are yet to come.
---Laurie :-)
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