August 2nd, 2008 3:00pm
Guess where we are!! HOME!! HOME!! HOME!! We made it in at about midnight last night. Somerset never looked so
good. The coordinator was able to get everything situated by yesterday morning. I called Robin and expected to be
home today, but Robin was able to get off from work yesterday evening. He drove up and got us about 8pm. It took me
all day to pack. I started yesterday morning and didn't finish until Robin got there. You just don't realize how much you
can accumulate in a few months time. All the stuff filled our van to the top. It'll take a week to get everything situated
where I want it.
--He is doing good. Keep up the prayers that he won't get sick and have to go back. He has a scope and clinic
appointment Thursday.
--We are planning to have his welcome home party next Sunday at 3pm. It will be at our church. (Science Hill Christian
Church) I'll make up directions and get them posted on here ASAP. I want everyone to come that can. Everyone is
welcome. It'll be a good time. I request only one thing. Please, if you think you may be sick, wait until you feel better and
visit Levi another time. It would be a terrible shame for him to catch something and have to go back. I will have masks
and hand cleaner available at the party. The masks will only have to be worn if you are very close to Levi. EVERYONE
will have to use the hand cleaner. It's only a small thing to have to do to keep him healthy. I really appreciate your help
in keeping Levi healthy and at home. I love you all and can't wait to see you.
--There will be cake, ice cream, chips, drinks, and maybe a few other refreshments. If you have any food that you want
to share, you are more than welcome, but please don't feel like you have to. There will be plenty of stuff there already. I
will send out invitations via email and of course through this site. Please spread it by word of mouth to anyone you think
may want to come. I don't have everyone's email and there's not enough time to send anything snail mail. I'll try to have
directions on here by tomorrow.
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August 9th, 2008 2:15pm
Wow! It's been a week already! I can't believe it. It has been so nice.
--We went to Cincinnati on Thursday. We had to be there at 7am for the scope. We left home at 4:30am. Ughhhhh! It
was a very long day. The scope looked good and he shouldn't have to get another one unless he gets sick. Dr. Sam is
on vacation for the next 2 weeks. He said he was ok with not seeing Levi until he got back. So we don't have to go back
to Cincinnati for 3 weeks. We go back on the 28th. He said he looked good and we can start increasing his rate of
feeds and making his window longer. He should be back to where he was before he got sick by the time we go back.
--Did you all see the paper today? Levi was on the front page. I didn't see the story on their website or I would give you
a link. I'll watch for it the next couple of days that way some of you can see it that aren't local.
--We took the boys to SomerSplash water park today. They had a really good time. Robin said, "Now this is what
summer is supposed to be like." I couldn't agree more.
--Don't forget the party tomorrow. Can't wait to see you all. Everybody take care. Love you.
--Laurie and Levi
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August 11th, 2008
Well, Levi's party went very well. We had a turnout of about 55 or so. Levi had his cake. He maybe got a taste of it, but
he didn't eat any. He made a mess regardless.That's the point of a 1st birthday anyway. The church had a sign out
front welcoming our Levi home. It was really nice. He got LOTS and LOTS of clothes. He should be set for winter. I just
hope he grows a bit longer because he is so short, I will have to get 6 months pants or roll up the legs. The shirts fit just
fine, but if he wears shorts in a 12 months, they come to his ankles almost. The doctor said he should have a growth
spurt soon since he is now off the steroids. I sure hope so. The clothes were beautiful and he got a few toys. I think he
had a really good time, but he was exhausted by the time we got home. I am putting what pictures I took on the same
page I had the invitation and directions. The link is at the bottom of this page. If any of you got pictures, please send
me a copy via email. My address is llg12480@aol.com. I would really appreciate it. I videoed most of the party, but I
didn't get many pictures. I got some of him and the cake and some of the decorations, but I got busy with other things
and didn't get pictures of opening gifts. Also I know a couple people took a family picture of all the family that was there.
I would also like a copy of that.
--Thanks to all of you that came. It really means a lot to us that we have such wonderful people in our life that support
us. I can honestly tell you that without you all, it would've been a much more difficult year. So thank you, and God Bless
you.
--I put a link to Levi's story that was in the Commonwealth Journal at the top of this update. Just click the 'Strongest Boy
I Know" link and it will take you to their site where the story is.
--Love you all and thanks again. We love you all with all our hearts. --Laurie, Robin, Brandon, Jacob, Toby, and of
course, LEVI!!
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August 15th, 2008
Hope everyone is doing good. Levi is doing pretty good. His output is on the rise again so I have called our coordinator
in Cincinnati to see what I need to do. She hasn't called me back yet. It's not as bad as last time, but it still has me a bit
worried. I just went up on his feeds Tuesday night, so I am hoping that is all it is. I just don't want him to get dehydrated
again. Yesterday it was up, but just steadily going up. Today it was more like a big leap and he is already at the same
output that he had all day yesterday and it has only been about 12 hours. Hopefully it will slow down. He hasn't had his
window yet and he usually slows down a lot when he is unhooked from his feeds. We'll just have to see. I have extra IV
fluids if he needs it. Hopefully he is just getting used to the new rate. Maybe we may just have to back off a bit.
--I haven't been on in a while so I don't think I've mentioned this yet. The coordinator called me about his labs on
Monday and told me that the labs looked good. She said that his biopsies from last week's scope showed a little
inflammation. It was nothing to be concerned about, but it did prompt Dr Sam to want another scope. We have clinic on
the 28th and then the scope will be the following week. I hope it's nothing, but with today's increased output, it kinda
makes me wonder. It's hard for your mind not to run wild when you know all the things that it could be. The good thing is
he is still acting like his normal self.
--He hates his PICC and I will be glad when it goes. He scares me to death digging at it. I think he may be developing an
allergy to the Versaderm (the tape we use to cover the site). I really hope not, because I have no idea what we will use
if he is. He wakes up in the middle of the night digging for all it's worth. Then that wakes me up in a panic that he's
gonna pull it out or get germs in there and get in infected. I've tried everything to cover it up so he can't get to it, but
he's smarter than I give him credit for. He still manages to get to it when it is really bothering him.
--My sisters and I got tattoos yesterday (just one each). It was all 3 of our 1st tattoo. We wanted to get the same thing
and in the same spot so we would match. We decided on a green ribbon for Levi and in honor of the donor. I wasn't too
worried about how bad it would hurt --I've had 4 kids, it couldn't be any worse than that. But they were really worked up
(neither has any kids and are a lot younger than me-18 and 20). It was funny seeing them squirm. It really didn't hurt
that bad. It felt about like I expected it to.Today it feels like I scraped my shoulder, but nothing terrible. I think it turned
out really nice and it means a lot to me. Now, there will be no question as to whether I want to donate my organs or not.
lol
--Love you all lots. I'll let you know what happens with the output. Pray we don't have to truck it back to Cincinnati so
soon.--Laurie
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August 16th, 2008
I got a call back yesterday from the coordinator. Dr Sam is on vacation so she asked the attending on call. She asked if
I felt comfortable staying home and just giving him extra IV fluids at night. I said that he was acting fine, so I was ok with
that. She told me to call the fellow on call today if his output continued to be high. It ended up being over 600ml and he
had been running about 350ml. So far today he is only about 160ml. The day is half over so even if he doubles that, he
will be doing really good. Hopefully it was just a fluke. I gave him the whole 500ml of fluid last night instead of th 250ml
that I had been giving. That should have caught him up. I may give him another 500 tonight just to make sure he is
good on fluid.
--Just wanted to let you know how he was. Cross your fingers that he will get it together so we don't have to go back.
--Laurie
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August 21st, 2008
No news is usually good news. Sorry I haven't updated, but it's pretty hectic around here. I've had to become a mommy
to 4 boys again, not just one. It's been an adjustment. Brandon and Jacob are back in school and have been for the
past couple weeks. Jacob is still adjusting. He's nothing like Brandon was. We always took Brandon. We walked
Brandon to his classroom door for a week or so, then he wanted to walk by himself from the front entrance of the
school. Then within another week or so, he said just drop me off at the door. I about cried. He was growing up so fast. I
wasn't ready to drop him off at the door. Now, Jacob is a totally different story. I am still walking him to class. Some
mornings he cries because he doesn't want to go. 2 days this week I ate breakfast with him just so he would be ok with
staying. He is so pitiful. I think it's been a big adjustment for him. I've been gone for a better part of the past year and
when I finally get home he has to go to school. The other three boys have really had it rough the past year. Hopefully
this next year will be better for all of us.
--Levi has been doing really good. His output is back to normal. Well, his new normal. I'm not sure if it'll get back to what
it was before he got sick or not. I've been increasing his feeds each week (we are at 50ml/hr) so maybe once we get at
our goal (52ml/hr), his output may come down. We will be at our goal next week before we have clinic. I don't know if
they'll change anything or not. He's still getting fluid at night. I hope he is good enough to get rid of that. Our
appointment is Thursday at 1pm. His labs from this week were good.
--He has been doing so well eating. He's still not eating much, but he's putting a lot more in his mouth. Any kind of
finger food that he can put in his mouth himself, he will try to eat. He still doesn't like me coming toward him with a
spoon. I think it's the spoon itself. If I dip a biter biscuit in his baby food, he'll eat it. He's been nibbling on french fries,
thin pretzel sticks, wagon wheels and he even took a piece of my pizza crust and chewed on it a while. He's been
sipping on water and I got him some gatorade today for some flavor. He really likes it. I will try to get some of the vanilla
flavored formula when we go to clinic next week. It would be awesome if he would drink enough of that to get rid of the
G-tube, but I believe we are still a few months from that. Don't tell, but I've also found that he likes DumDum lollipops. I
love it that he's finally taken an interest in eating. WE ARE MAKING PROGRESS!!
--He's still not crawling, but he's getting down on all fours and up-and down-and up and down. So he travels a little bit.
He can stand on his own with a little support. He's still afraid for you to let him go. If he wasn't afraid, I think he could
stand on his own.
--Robin starts school next week. Pray that he stays safe on his trips back and forth. He has class in Richmond Mon and
Wed and clinicals in London on Tues and Thurs.
--Love you all.--Laurie
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August 24th, 2008
Well Levi's PICC is out! Dr. Levi decided it was time this morning about 6am. What a night last night. Well, it started
yesterday evening. Robin and I left Levi with Robin's mom and aunt while we went to clean our car. While we were
gone, Levi pulled his ostomy bag loose and made a huge mess. I fixed it once we got home. Then last night about 2am,
Levi fell out of the bed. Then about 6am he woke me crying and I saw that he had pulled out his PICC. After getting all
the tape off, he scratched and scratched his poor little arm until he drew blood. It really bothered him. He wakes up
almost every night scratching his arm and I figured it was only a matter of time before he managed to pull it out. Then
his G-tube came loose and leaked all over our bed.
--I haven't made any calls yet to Cincy about the PICC. I knew they wouldn't do anything today anyway. The coordinator
will be in tomorrow and we'll see what happens. I really hope we don't have to go back to get one placed. He has clinic
Thursday and I'm hoping that maybe they can schedule him to get one that day while we are up there. He still is getting
fluids at night, but I think his output is good enough that he may not need the fluid anymore anyway. The only thing that
he will need the PICC for would be labs. He is getting them once a week. If we could get a nurse that could poke him
and get blood pretty easy, I think I would rather him get poked once a week, than have that dreadful PICC line
bothering him every day. The only other thing I worry about that he would still need his PICC would be for his antibiotic
he has to get next week when he has the scope. I would love it if we could leave it out, but I think they will probably want
to put it back. I just pray they can wait until Thursday so we don't have to make 2 trips this week. He does have labs
scheduled in the morning. Boy, the nurse will have a surprise when she gets here.
--That's all for now. Oh, yeah, happy birthday, Jessica.--Laurie
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August 25th, 2008
Here's what happened about the PICC. The nurse came out to get labs. She tried twice to stick him to get blood, but
didn't have any luck .We called Cincy. The verdict is to leave it out and see how he does. YAY!! Although, now I have
to try to find a lab that won't use him as a pin cushion. My sister-in-law works at the lab where Robin works and they are
going to try in the morning. I hope they have good luck. They have to get his Prograf level so we will be there before 9
in the morning. I was told just to watch his intake and Output to make sure he stayed positive (keeping more in than
out) and that he didn't start showing any signs of getting dehydrated.
--Also when the nurse weighed him, he had lost 3 oz. The week before he had lost 3 oz. It may be from being off the
steroids. When I go up on his feeds this week I am not supposed to add an hour to his window. This way he will get
extra fluid and extra calories. The coordinator said they would reevaluate his calories more when we go to clinic
Thursday.
--So I am excited. I really hope that they can get the blood tomorrow. I think Levi will be happy to have rid of that awful
PICC. His arm is broken out where the dressing was. I think he was developing an allergy to the new kind we were
using. I don't know what else we would use if they had to put another one in. He's been allergic to 2 other kinds besides
this. He's dug at his poor little arm so much he has drawn blood. I'll be glad to get it healed up.
--Oh, yeah, I was so excited about the PICC incident yesterday that I forgot to say that he crawled a little yesterday!!!
YAY!YAY!YAY!
--Love ya lots. --Laurie
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August 26th, 2008
Just a quick update. My sister-in-law, Jessica got blood on the first stick. She got plenty of blood to do the tests! YAY!
We were worried that we wouldn't get blood at all or if we did, it wouldn't be enough. BUT that wasn't an issue. I was so
happy. So thank you very much Jessica and Christy.
-----I just got a call from our coordinator with Levi's lab results. She said everything looks stable. He looks well
hydrated.She asked how the blood draw went today and said she was pleased it went so well. She was afraid it would
be a nightmare getting blood from him. She said she did schedule him another PICC placement for Thursday, but she's
going to talk to Levi's doctor tomorrow when he's back in town and see what he thinks. She said she would call
tomorrow and see how his fluid balance is--to see how positive he is(more in than out). I really hope we get to do
without the PICC.
--Love ya--Laurie
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August 31st, 2008
Sorry I haven't updated in a few days especially since he had a clinic appointment. He had clinic on Thursday. The
verdict is to leave the PICC out!! YAY! He's doing really well without the extra fluid. They changed his labs from every
week to every other week so he won't have to get stuck as often. He seems to like the freedom of his arm. Hey, he
started crawling the day he pulled it out, does that say something?
--His ostomy output is right back where it was before he got sick in June. They didn't make any major changes. Actually
the only change I can think of was that they increased his calorie concentration from 27cal/oz to 30 cal/oz. He had lost
a tiny bit of weight since last time, but they didn't seem at all concerned about it. Surely the higher calories in his
formula will help in that department. I'm not sure when we go back. He was scheduled for a scope next week on the 4th I
think, but it was at 8am. URGHH! So we would have to be there at 6:30 and leave home by 4am. The coordinator was
going to see if she could get him on the schedule for the following week when he has clinic again, but she hasn't gotten
back to me yet. I really hope we don't have to be there that early.
--They also gave me some vanilla flavored formula to ry for him to drink when he's off the feeds. He's not digging it too
much, but he did sip on it a little. Now gatorade on the other hand has become his new favorite drink. He drank 3 oz of
it yesterday.
--He's been crawling all over the place now. It was like as soon as he figured it out, he really liked being able to go
where he wanted. It's ok when he's off his feeds, but it scares me a little when he's hooked up. I am afraid he'll pull his
g-tube out. He gets away from his backpack and I have to keep moving it closer so he don't stretch the cord. Oh, my, I
don't know what I'll do when he starts walking. He'll just have to wear the pack and take it with him. I love seeing him
crawl. I've waited almost 14 months to see it. I was so excited when he started crawling the other day, I squealed at
Robin, "Look!! He's crawling!!" I got a lump in my throat. He's come really far. He'll be walking soon. He can pull up to
some furniture now and can stand as long as he has support. It doesn't take much to support him though. I think he's
more scared than anything. If he wasn't scared, he could stand alone. He's also been getting into stuff with his newly
found travelling method. He's gonna get himself into trouble. He found the corner behind the garbage can where we
store the mop and broom. He likes to get into that. He also found our DVD shelf behind the door in the bedroom and
pulled several off the shelf. Instead of getting on to him, I just laughed to see him getting into meanness. He is going to
be sooooo rotten.
--I'll update when I get another chance. Love you all. Please keep Robin's dad in your prayers. He had surgery again
on his stomach on Thursday and is still in the hospital. I won't go into details, but please remember to pray for him and
my mother-in-law who is by his side 24/7
--Have a happy Labor Day!. --Laurie
Guess where we are!! HOME!! HOME!! HOME!! We made it in at about midnight last night. Somerset never looked so
good. The coordinator was able to get everything situated by yesterday morning. I called Robin and expected to be
home today, but Robin was able to get off from work yesterday evening. He drove up and got us about 8pm. It took me
all day to pack. I started yesterday morning and didn't finish until Robin got there. You just don't realize how much you
can accumulate in a few months time. All the stuff filled our van to the top. It'll take a week to get everything situated
where I want it.
--He is doing good. Keep up the prayers that he won't get sick and have to go back. He has a scope and clinic
appointment Thursday.
--We are planning to have his welcome home party next Sunday at 3pm. It will be at our church. (Science Hill Christian
Church) I'll make up directions and get them posted on here ASAP. I want everyone to come that can. Everyone is
welcome. It'll be a good time. I request only one thing. Please, if you think you may be sick, wait until you feel better and
visit Levi another time. It would be a terrible shame for him to catch something and have to go back. I will have masks
and hand cleaner available at the party. The masks will only have to be worn if you are very close to Levi. EVERYONE
will have to use the hand cleaner. It's only a small thing to have to do to keep him healthy. I really appreciate your help
in keeping Levi healthy and at home. I love you all and can't wait to see you.
--There will be cake, ice cream, chips, drinks, and maybe a few other refreshments. If you have any food that you want
to share, you are more than welcome, but please don't feel like you have to. There will be plenty of stuff there already. I
will send out invitations via email and of course through this site. Please spread it by word of mouth to anyone you think
may want to come. I don't have everyone's email and there's not enough time to send anything snail mail. I'll try to have
directions on here by tomorrow.
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August 9th, 2008 2:15pm
Wow! It's been a week already! I can't believe it. It has been so nice.
--We went to Cincinnati on Thursday. We had to be there at 7am for the scope. We left home at 4:30am. Ughhhhh! It
was a very long day. The scope looked good and he shouldn't have to get another one unless he gets sick. Dr. Sam is
on vacation for the next 2 weeks. He said he was ok with not seeing Levi until he got back. So we don't have to go back
to Cincinnati for 3 weeks. We go back on the 28th. He said he looked good and we can start increasing his rate of
feeds and making his window longer. He should be back to where he was before he got sick by the time we go back.
--Did you all see the paper today? Levi was on the front page. I didn't see the story on their website or I would give you
a link. I'll watch for it the next couple of days that way some of you can see it that aren't local.
--We took the boys to SomerSplash water park today. They had a really good time. Robin said, "Now this is what
summer is supposed to be like." I couldn't agree more.
--Don't forget the party tomorrow. Can't wait to see you all. Everybody take care. Love you.
--Laurie and Levi
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August 11th, 2008
Well, Levi's party went very well. We had a turnout of about 55 or so. Levi had his cake. He maybe got a taste of it, but
he didn't eat any. He made a mess regardless.That's the point of a 1st birthday anyway. The church had a sign out
front welcoming our Levi home. It was really nice. He got LOTS and LOTS of clothes. He should be set for winter. I just
hope he grows a bit longer because he is so short, I will have to get 6 months pants or roll up the legs. The shirts fit just
fine, but if he wears shorts in a 12 months, they come to his ankles almost. The doctor said he should have a growth
spurt soon since he is now off the steroids. I sure hope so. The clothes were beautiful and he got a few toys. I think he
had a really good time, but he was exhausted by the time we got home. I am putting what pictures I took on the same
page I had the invitation and directions. The link is at the bottom of this page. If any of you got pictures, please send
me a copy via email. My address is llg12480@aol.com. I would really appreciate it. I videoed most of the party, but I
didn't get many pictures. I got some of him and the cake and some of the decorations, but I got busy with other things
and didn't get pictures of opening gifts. Also I know a couple people took a family picture of all the family that was there.
I would also like a copy of that.
--Thanks to all of you that came. It really means a lot to us that we have such wonderful people in our life that support
us. I can honestly tell you that without you all, it would've been a much more difficult year. So thank you, and God Bless
you.
--I put a link to Levi's story that was in the Commonwealth Journal at the top of this update. Just click the 'Strongest Boy
I Know" link and it will take you to their site where the story is.
--Love you all and thanks again. We love you all with all our hearts. --Laurie, Robin, Brandon, Jacob, Toby, and of
course, LEVI!!
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August 15th, 2008
Hope everyone is doing good. Levi is doing pretty good. His output is on the rise again so I have called our coordinator
in Cincinnati to see what I need to do. She hasn't called me back yet. It's not as bad as last time, but it still has me a bit
worried. I just went up on his feeds Tuesday night, so I am hoping that is all it is. I just don't want him to get dehydrated
again. Yesterday it was up, but just steadily going up. Today it was more like a big leap and he is already at the same
output that he had all day yesterday and it has only been about 12 hours. Hopefully it will slow down. He hasn't had his
window yet and he usually slows down a lot when he is unhooked from his feeds. We'll just have to see. I have extra IV
fluids if he needs it. Hopefully he is just getting used to the new rate. Maybe we may just have to back off a bit.
--I haven't been on in a while so I don't think I've mentioned this yet. The coordinator called me about his labs on
Monday and told me that the labs looked good. She said that his biopsies from last week's scope showed a little
inflammation. It was nothing to be concerned about, but it did prompt Dr Sam to want another scope. We have clinic on
the 28th and then the scope will be the following week. I hope it's nothing, but with today's increased output, it kinda
makes me wonder. It's hard for your mind not to run wild when you know all the things that it could be. The good thing is
he is still acting like his normal self.
--He hates his PICC and I will be glad when it goes. He scares me to death digging at it. I think he may be developing an
allergy to the Versaderm (the tape we use to cover the site). I really hope not, because I have no idea what we will use
if he is. He wakes up in the middle of the night digging for all it's worth. Then that wakes me up in a panic that he's
gonna pull it out or get germs in there and get in infected. I've tried everything to cover it up so he can't get to it, but
he's smarter than I give him credit for. He still manages to get to it when it is really bothering him.
--My sisters and I got tattoos yesterday (just one each). It was all 3 of our 1st tattoo. We wanted to get the same thing
and in the same spot so we would match. We decided on a green ribbon for Levi and in honor of the donor. I wasn't too
worried about how bad it would hurt --I've had 4 kids, it couldn't be any worse than that. But they were really worked up
(neither has any kids and are a lot younger than me-18 and 20). It was funny seeing them squirm. It really didn't hurt
that bad. It felt about like I expected it to.Today it feels like I scraped my shoulder, but nothing terrible. I think it turned
out really nice and it means a lot to me. Now, there will be no question as to whether I want to donate my organs or not.
lol
--Love you all lots. I'll let you know what happens with the output. Pray we don't have to truck it back to Cincinnati so
soon.--Laurie
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August 16th, 2008
I got a call back yesterday from the coordinator. Dr Sam is on vacation so she asked the attending on call. She asked if
I felt comfortable staying home and just giving him extra IV fluids at night. I said that he was acting fine, so I was ok with
that. She told me to call the fellow on call today if his output continued to be high. It ended up being over 600ml and he
had been running about 350ml. So far today he is only about 160ml. The day is half over so even if he doubles that, he
will be doing really good. Hopefully it was just a fluke. I gave him the whole 500ml of fluid last night instead of th 250ml
that I had been giving. That should have caught him up. I may give him another 500 tonight just to make sure he is
good on fluid.
--Just wanted to let you know how he was. Cross your fingers that he will get it together so we don't have to go back.
--Laurie
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August 21st, 2008
No news is usually good news. Sorry I haven't updated, but it's pretty hectic around here. I've had to become a mommy
to 4 boys again, not just one. It's been an adjustment. Brandon and Jacob are back in school and have been for the
past couple weeks. Jacob is still adjusting. He's nothing like Brandon was. We always took Brandon. We walked
Brandon to his classroom door for a week or so, then he wanted to walk by himself from the front entrance of the
school. Then within another week or so, he said just drop me off at the door. I about cried. He was growing up so fast. I
wasn't ready to drop him off at the door. Now, Jacob is a totally different story. I am still walking him to class. Some
mornings he cries because he doesn't want to go. 2 days this week I ate breakfast with him just so he would be ok with
staying. He is so pitiful. I think it's been a big adjustment for him. I've been gone for a better part of the past year and
when I finally get home he has to go to school. The other three boys have really had it rough the past year. Hopefully
this next year will be better for all of us.
--Levi has been doing really good. His output is back to normal. Well, his new normal. I'm not sure if it'll get back to what
it was before he got sick or not. I've been increasing his feeds each week (we are at 50ml/hr) so maybe once we get at
our goal (52ml/hr), his output may come down. We will be at our goal next week before we have clinic. I don't know if
they'll change anything or not. He's still getting fluid at night. I hope he is good enough to get rid of that. Our
appointment is Thursday at 1pm. His labs from this week were good.
--He has been doing so well eating. He's still not eating much, but he's putting a lot more in his mouth. Any kind of
finger food that he can put in his mouth himself, he will try to eat. He still doesn't like me coming toward him with a
spoon. I think it's the spoon itself. If I dip a biter biscuit in his baby food, he'll eat it. He's been nibbling on french fries,
thin pretzel sticks, wagon wheels and he even took a piece of my pizza crust and chewed on it a while. He's been
sipping on water and I got him some gatorade today for some flavor. He really likes it. I will try to get some of the vanilla
flavored formula when we go to clinic next week. It would be awesome if he would drink enough of that to get rid of the
G-tube, but I believe we are still a few months from that. Don't tell, but I've also found that he likes DumDum lollipops. I
love it that he's finally taken an interest in eating. WE ARE MAKING PROGRESS!!
--He's still not crawling, but he's getting down on all fours and up-and down-and up and down. So he travels a little bit.
He can stand on his own with a little support. He's still afraid for you to let him go. If he wasn't afraid, I think he could
stand on his own.
--Robin starts school next week. Pray that he stays safe on his trips back and forth. He has class in Richmond Mon and
Wed and clinicals in London on Tues and Thurs.
--Love you all.--Laurie
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August 24th, 2008
Well Levi's PICC is out! Dr. Levi decided it was time this morning about 6am. What a night last night. Well, it started
yesterday evening. Robin and I left Levi with Robin's mom and aunt while we went to clean our car. While we were
gone, Levi pulled his ostomy bag loose and made a huge mess. I fixed it once we got home. Then last night about 2am,
Levi fell out of the bed. Then about 6am he woke me crying and I saw that he had pulled out his PICC. After getting all
the tape off, he scratched and scratched his poor little arm until he drew blood. It really bothered him. He wakes up
almost every night scratching his arm and I figured it was only a matter of time before he managed to pull it out. Then
his G-tube came loose and leaked all over our bed.
--I haven't made any calls yet to Cincy about the PICC. I knew they wouldn't do anything today anyway. The coordinator
will be in tomorrow and we'll see what happens. I really hope we don't have to go back to get one placed. He has clinic
Thursday and I'm hoping that maybe they can schedule him to get one that day while we are up there. He still is getting
fluids at night, but I think his output is good enough that he may not need the fluid anymore anyway. The only thing that
he will need the PICC for would be labs. He is getting them once a week. If we could get a nurse that could poke him
and get blood pretty easy, I think I would rather him get poked once a week, than have that dreadful PICC line
bothering him every day. The only other thing I worry about that he would still need his PICC would be for his antibiotic
he has to get next week when he has the scope. I would love it if we could leave it out, but I think they will probably want
to put it back. I just pray they can wait until Thursday so we don't have to make 2 trips this week. He does have labs
scheduled in the morning. Boy, the nurse will have a surprise when she gets here.
--That's all for now. Oh, yeah, happy birthday, Jessica.--Laurie
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August 25th, 2008
Here's what happened about the PICC. The nurse came out to get labs. She tried twice to stick him to get blood, but
didn't have any luck .We called Cincy. The verdict is to leave it out and see how he does. YAY!! Although, now I have
to try to find a lab that won't use him as a pin cushion. My sister-in-law works at the lab where Robin works and they are
going to try in the morning. I hope they have good luck. They have to get his Prograf level so we will be there before 9
in the morning. I was told just to watch his intake and Output to make sure he stayed positive (keeping more in than
out) and that he didn't start showing any signs of getting dehydrated.
--Also when the nurse weighed him, he had lost 3 oz. The week before he had lost 3 oz. It may be from being off the
steroids. When I go up on his feeds this week I am not supposed to add an hour to his window. This way he will get
extra fluid and extra calories. The coordinator said they would reevaluate his calories more when we go to clinic
Thursday.
--So I am excited. I really hope that they can get the blood tomorrow. I think Levi will be happy to have rid of that awful
PICC. His arm is broken out where the dressing was. I think he was developing an allergy to the new kind we were
using. I don't know what else we would use if they had to put another one in. He's been allergic to 2 other kinds besides
this. He's dug at his poor little arm so much he has drawn blood. I'll be glad to get it healed up.
--Oh, yeah, I was so excited about the PICC incident yesterday that I forgot to say that he crawled a little yesterday!!!
YAY!YAY!YAY!
--Love ya lots. --Laurie
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August 26th, 2008
Just a quick update. My sister-in-law, Jessica got blood on the first stick. She got plenty of blood to do the tests! YAY!
We were worried that we wouldn't get blood at all or if we did, it wouldn't be enough. BUT that wasn't an issue. I was so
happy. So thank you very much Jessica and Christy.
-----I just got a call from our coordinator with Levi's lab results. She said everything looks stable. He looks well
hydrated.She asked how the blood draw went today and said she was pleased it went so well. She was afraid it would
be a nightmare getting blood from him. She said she did schedule him another PICC placement for Thursday, but she's
going to talk to Levi's doctor tomorrow when he's back in town and see what he thinks. She said she would call
tomorrow and see how his fluid balance is--to see how positive he is(more in than out). I really hope we get to do
without the PICC.
--Love ya--Laurie
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August 31st, 2008
Sorry I haven't updated in a few days especially since he had a clinic appointment. He had clinic on Thursday. The
verdict is to leave the PICC out!! YAY! He's doing really well without the extra fluid. They changed his labs from every
week to every other week so he won't have to get stuck as often. He seems to like the freedom of his arm. Hey, he
started crawling the day he pulled it out, does that say something?
--His ostomy output is right back where it was before he got sick in June. They didn't make any major changes. Actually
the only change I can think of was that they increased his calorie concentration from 27cal/oz to 30 cal/oz. He had lost
a tiny bit of weight since last time, but they didn't seem at all concerned about it. Surely the higher calories in his
formula will help in that department. I'm not sure when we go back. He was scheduled for a scope next week on the 4th I
think, but it was at 8am. URGHH! So we would have to be there at 6:30 and leave home by 4am. The coordinator was
going to see if she could get him on the schedule for the following week when he has clinic again, but she hasn't gotten
back to me yet. I really hope we don't have to be there that early.
--They also gave me some vanilla flavored formula to ry for him to drink when he's off the feeds. He's not digging it too
much, but he did sip on it a little. Now gatorade on the other hand has become his new favorite drink. He drank 3 oz of
it yesterday.
--He's been crawling all over the place now. It was like as soon as he figured it out, he really liked being able to go
where he wanted. It's ok when he's off his feeds, but it scares me a little when he's hooked up. I am afraid he'll pull his
g-tube out. He gets away from his backpack and I have to keep moving it closer so he don't stretch the cord. Oh, my, I
don't know what I'll do when he starts walking. He'll just have to wear the pack and take it with him. I love seeing him
crawl. I've waited almost 14 months to see it. I was so excited when he started crawling the other day, I squealed at
Robin, "Look!! He's crawling!!" I got a lump in my throat. He's come really far. He'll be walking soon. He can pull up to
some furniture now and can stand as long as he has support. It doesn't take much to support him though. I think he's
more scared than anything. If he wasn't scared, he could stand alone. He's also been getting into stuff with his newly
found travelling method. He's gonna get himself into trouble. He found the corner behind the garbage can where we
store the mop and broom. He likes to get into that. He also found our DVD shelf behind the door in the bedroom and
pulled several off the shelf. Instead of getting on to him, I just laughed to see him getting into meanness. He is going to
be sooooo rotten.
--I'll update when I get another chance. Love you all. Please keep Robin's dad in your prayers. He had surgery again
on his stomach on Thursday and is still in the hospital. I won't go into details, but please remember to pray for him and
my mother-in-law who is by his side 24/7
--Have a happy Labor Day!. --Laurie
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