September 2nd, 2008
Well our coordinator couldn't get the scope rescheduled for next week so we have to be there at 6:30am on
Thursday morning. I'll have to be up by at least 3:30 to leave by 4am. URGHHH! Hopefully this will be the last
one. We also have clinic at 1pm so I don't know what we'll do in the meantime. He'll be done with his scope by
9am. I guess we'll shop around or something. It will be a loooong day, that's for sure. The driving is what I
dread. That's all today I just wanted to let you know about the scope Thursday. --Laurie
-----------------------------------------------------------------------
September 5th, 2008
What a long day yesterday was! I tried going to bed early on Wednesday, but that didn't happen. I got a few
hours sleep before I had to be up at 3:30am. We left a little after 4am. Levi and myself got there at almost 7am.
I honestly wasn't that sleepy. He got the scope and everything looked good, but as usual we have to wait on the
biopsy results to come back in a day or so. Dr Sam said if it looked ok this time, he wouldn't have to have
another one for a while. Hopefully he will continue to do good and we can get the ostomy reversed pretty soon.
--After the scope we had 4 hours to kill before clinic. I planned on sleeping in the car with him for a couple hours
so I wouldn't be sleepy on the drive home, but he was wide awake because he slept the whole way there. SOoo,
we decided to go shopping at Walmart and then get us a bite to eat before heading back to the hospital. I found
the cutest pair of shoes for him in there that I had to get. So we had a good mommy and Levi day.
--We got to clinic and there were a few changes made. First he gained weight this time. YAY! I guess the higher
calorie Elecare helped. He was 9.23kg last week and this week he was 9.56kg. That translates to about 11
ounces gained in one week. Dr Sam didn't want to change anything yet as far as increasing his window off
feeds just yet because this was the first time he'd gained in quite a while. Even though it was a significant
amount to gain. He'll probably put on a couple pounds before we have our next appointment. Doc said he may
give him a bigger window next time. We go back in 3 weeks on the 24th of this month.
--He also grew a little taller. I didn't catch how much. I just heard them say he grew a little. Which is probably
from the loss of the steroid finally catching up to him.
--Overall, the doc was very impressed. He said he'd like to give hime a Mic-Key button G tube instead of what
he has now. Basically, it just wouldn't have the tube connected like it does now. He said maybe once he has a
longer window off his feeds, then they may change it. It would be a lot nicer when he's not hooked up because
he wouldn't have the tube hanging down in the way.
--A couple other changes that were made was that they stopped his amlodipine (blood pressure med) and
Actigall (med to help keep the bile ducts from getting stopped up). They also said I could stop using the pectin
in his formula. Liquid pectin is called sure gel like you use when making jam and jelly. They added it when he
was having all the output, but said he probably doesn't need it anymore. So if anyone needs any sure gel I have
a box and a half that will go to waste. I just bought them the other day. Any of you jam or jelly makers?
--So we go back to clinic on the 24th and he has labs due next week on the 9th. Pray that we get a good lab
draw and he doesn't have to get stuck too many times.
--One other thing and I'm gonna get off here. I don't know if you remember or not when I mentioned that a few
from our church--the ones on the board of directors and a couple deacons-- were trying to get a non-profit
foundation set up for Levi to help cover medical expenses and other expenses related to Levi's transplant. Well
it was approved a while back, but we had been waiting on the final word that it was going to be tax exempt. Well,
we just got that it was a "YES" a few days ago. YAY! For a while we thought it might not happen, but the Lord
was in our favor and it finally went through. The way it is set up now is that not only will the funds be available
for Levi, but if another child comes up in our region that is dealing with the same stuff we have went through,
the funds would be available for them as well. Right now it is set up personally for Levi. I think that it would be
amazing to help someone else like ourselves. So many people have already reached out and helped us so
much this past year, I would only love to return the favor to someone else in need. The funds that will be in the
foundation will be dispersed at the discretion of the board members. It will help pay our gas to the hospital and
to doctors appointments, pay for us to eat while we are there, pay for any medical bills that might not get
covered, just about anything that has to do with Levi's well being. That really makes me feel good because
when Levi grows up, he won't be able to stay on our insurance forever and I would worry that he would worry
about how to pay for his medicines or if he would have to be hospitilized. I don't know how hard it will be for him
to get insurance on his own with the medical history he has. So flyers are in the works and there is already a
website with donation information, it just hasn't been updated yet. I'll update as soon as I know more. Hopefully
we will do good with it. Love you all--Laurie
----------------------------------------------------------------------
September 11th, 2008
Levi had labs Tuesday. Everything looked good except his BUN and potassium were slightly elevated so we had
to have some of the labs repeated today. They had come down somewhat, but they were still elevated. The
coordiinator called and said Dr Sam said it was probably from him being off of the steroid. His potassium and
sodium had become off balance. So they started him on a new medicine to help balance things out. It is called
Florinef, the generic is called Fludrocort. I'd never heard of it, but maybe it'll help. They want to do labs again
on Monday to make sure it's helping. Other than that there is nothing really going on. He's been crawling
everywhere. I love it. He's also been eating a little more. Everybody take care. Love you all.--Laurie
-------------------------------------------------------------------------
September 15th, 2008
Levi had his labs repeated again today. Poor little guy. Thank goodness they are always able to get it with the
first stick. Hopefully he won't have to get any more for 2 weeks so his veins start to heal or he may be getting
stuck more than once to get blood. My sis-in-law called me with the results earlier. She said the BUN had come
down a little more but the potassium was back where it was on Tuesday. She said the blood had started to
hemolize (clot) so that may be the reason for the high potassium. (They got blood when they first stuck him, but
it was really slow coming out so I guess it started to clot.) I haven't gotten a call yet from the coordinator so I
don't know if they'll want it drawn again or not. I really hope not.--Hey, the coordinator just called and said they
want to repeat the kidney numbers on Wednesday to see if it is still high. If it is, then they may need to increase
the dose of the new medicine they started. Urghh..
--We go back to Cincinnati next Thursday for clinic at 1pm. (By the way a friend of our's sister lives in Cincinnati
and said gas was a little over $6 a gallon there!! That was Saturday so I don't know if it has come back down
any or not. I'll have to be sure to gas up before I go. Our gas here is $4.09 hopefully it won't go any higher.) I
hope they change his feeds around some so that he gets a larger window. 5 hours is just not enough for a
crawling baby boy that likes to get into stuff. He should have gained plenty of weight this time. He'll drink some
of the formula each day. He's been drinking at least an ounce, but one day this week he chugged almost 4
ounces. I couldn't believe it. I wish he'd do that everyday because that is over 2 hours of feeds worth.
--Jacob is doing better in school. Brandon on the other hand surprised me with his midterm grades. He had a
69% in Reading. I was so surprised. He has a 15 min reading assignment to do each night after school and a
log to show he's done it. I have to sign it and he turns it in on Fridays. So I was shocked to see that grade
because he has always read and I've signed it each week. I couldn't get a straight answer why he got such a low
grade so I emailed his teacher. She told me he had only turned in 1 reading log all year so he was getting zeros
for those not turned in. I can't understand why he wouldn't turn them in. She also said he doesn't finish his work
in class and that was why he was bringing so much homework home. Brandon has always done great in school
and I thought he was doing great this year until I saw the grade. We had a long talk with him and I really hope
he's able to bring up his grade by report card time. He's much smarter than that. The only reason for it that I
could come up with was that this is his way of dealing with me being away for so long. Toby and Jacob have
both been dealing with it in thier own way. Toby refuses to be potty trained and has no problem being called a
baby and not a big boy. I guess it's his way of staying a baby. Jacob has had a really hard time going to school
and is just now getting used to it. I thought Brandon had been handling it really maturely, but Idsdddddsesddsaa
guess he had a really hard time too and this is his way of getting attention. I really hope Levi stays well so I don't
have to leave them anymore. This past year has been very hard on them not having their mommy. They are
dealing with it the best they know how.
--Well, that's all for now. i may update again after we get the kidney numbers Wednesday.
--Love you all. --Laurie
---------------------------------------------------------------------
September 25th, 2008
Oh, my, has it been 10 days since I last updated? Time flies when you're busy as a bee and enjoying life. OK let
me think of anything new that has happened over the past week and a half. Saturday was Toby's 3rd birthday.
We didn't do anything exciting, just had a good day with the family. We took the boys to the park to play and
had cake and ice cream later in the evening. Toby got a birthday surprise that made us all happy. Robin's dad
had been back in the hospital almost a month and he was discharged Saturday. We were really glad to get him
and Maw home.
--Monday Jacob "fell" off the picnic table in the back yard and hurt his arm. (When I say "fell", that means
pushed by an older brother) He kept complaining of it hurting so we stopped by After Hours and he didn't act
like it was hurting anymore when we got there so the doc said it was probably just a little tendonitis. He was fine
the rest of the evening, but he woke up at 4am crying that it hurt really bad and couldn't go back to sleep for 2
hours. He asked me to take him to the doc again so I got up and took a shower, but by the time I got out he had
fallen asleep---I guess the motrin and tylenol finally kicked in. I decided to let him sleep and then I took him back
to After Hours about 10:30am Tuesday morning. They xrayed it and only found something "questionable" on
one of the xrays. She said to wait until the radiologist looked at it to see for sure if it was broke. They gave him a
sling to wear his arm in. He hasn't complained anymore of it hurting unless you turn it a certain way since
Monday night, so we figured it wasn't broke....until yesterday. The radiologist's report came back and said that
there was a large amount of soft tissue swelling and a large amount of fluid around his elbow. They could not
see a fracture line, but with the swelling and the fluid there was a good chance it was an "occupational fracture".
I'm not sure what that means, but the radiologist recommended he see a orthopedic doc. So Robin is going to
get that set up for him. I don't know if they'll cast it or not since it seems not to be bothering him. I sent him to
school yesterday without the sling, but since it's broke, I sent him with it on today. I told his teacher that he could
take it off to write if he needed to (it's his right arm), but he definitely needed it on the playground to keep him
from doing something to hurt it worse. He's been climbing and I don't know what all outside since he hurt it. You
would never know it was broke.
--Tuesday was 200 days post transplant!!! YAY! We have come so far! I can't believe how well he is
doing. Keep up the good work Levi!
--Levi, Toby and I went to Cincinnati yesterday for Levi's clinic appointment. They said he looked GREAT! He
was gaining weight good. In fact he'd gained a pound since the last appointment 3 weeks ago. He weighs 22
pounds now! lol. They only made a couple changes to his feeds. He now gets 2 more hours off his feeds for a
total of 7 hours off. We had to go up by 2ml/hr on his rate and he has to drink at least 50ml by mouth to get the
additional 2 hours. He drinks at least 30ml a day anyway and I think with the extra time off an additional 20mls
won't be a big issue considering that he dinks that sometimes anyway. I am hoping he will get more hungry and
start eating more. They said now is the time we really have to push him to eat. They are going to get him set up
with speech to help him a push him a little in that area. Dr Sam said his platelets have finally dropped below
500,00 so if they consistently stay around 400,000-500,000 then we will be able to stop the baby aspirin. That's
all that happened at clinic. They all were impressed at how big he is getting--not just in weight, but that he's
growing up into a little man.
--Everyone take care. Hope it's not another 10 days before I update again. I will probably update Monday or
Tuesday after I get his lab results. We don't go back to Cincy until Oct 15th.
-------------------------------------------------------------------------
September 29th, 2008
Levi had to get his labs this morning. He had to get stuck twice, but we got it. The coordinator called and said
everything looked good except that darn potassium again. It was high again. She said Dr. Sam wasn't too
concerned because the result can be off if the blood started to hemolize(clot), but he does want the renal panel
repeated in one week just to be sure. So we are good until Monday.
-- I am trying to get in touch of the Children's Clinic to get him scheduled for his 1 year shots, but getting them
to answer their phone is like pulling teeth. I stayed on hold today for over 10 minutes and finally hung up. I have
a life and can't spend my whole day on hold.(The other day I spent 20 minutes without an answer.) Maybe I'll
have better luck tomorrow. It's not an emergency or anything so I'll just keep trying. He'll also have to get a flu
shot as soon as they become available and so will the rest of the family so we don't catch it and give it to him. I
really dread this upcoming cold and flu season. I am really scared he'll catch something and end up back in the
hospital. We really need your prayers to keep away all the bugs that'll be floating around.
--Levi's been getting braver everyday. He has been letting go of whatever he's holding onto and standing for a
little longer each day. We've been trying to get him to walk, but he won't hardly let go of whoever is holding him,
but.... TODAY he actually took about 3 steps by his self. YAY!! He did it when Beth (my sis-in-law) was
working with him. He did it about 4-5 times today. I was so proud. It won't be much longer before he's running all
over the place.
-- He's getting so big. You all should see him. He's developing his own little personality. He's very loving. When
he's around Beth's little girl, Maddi, he loves her to death. He lays his head on her and says, "Awwwww..."
--He's also learned to bite, so you have to watch yourself around him. He also likes to head-butt you if he's
close to your face .Toby used to be really bad to bite and it looks like Levi is taking after him. He actually bit
Toby last night and Toby said "NO! LEVI!" and I told Toby that it was payback for all the times he bit other
people.
--I am really enjoying watching him get stronger and stronger every day. It is a miracle he's even here and if you
didn't know his medical history, you'd never know he had anything so terrible happen to him. He's my angel and
the light in my life. He really puts my life into perspective. I appreciate the little things more. Not just with Levi but
with my other boys as well and also with anyone else that I care about. I read something on the internet the
other day and it really stood out to me because of the truth that was in it. It said "If God brings you to it, He'll get
you through it." AMEN! There's nothing more true. Love you all. Until next time.--Laurie and Levi
Well our coordinator couldn't get the scope rescheduled for next week so we have to be there at 6:30am on
Thursday morning. I'll have to be up by at least 3:30 to leave by 4am. URGHHH! Hopefully this will be the last
one. We also have clinic at 1pm so I don't know what we'll do in the meantime. He'll be done with his scope by
9am. I guess we'll shop around or something. It will be a loooong day, that's for sure. The driving is what I
dread. That's all today I just wanted to let you know about the scope Thursday. --Laurie
-----------------------------------------------------------------------
September 5th, 2008
What a long day yesterday was! I tried going to bed early on Wednesday, but that didn't happen. I got a few
hours sleep before I had to be up at 3:30am. We left a little after 4am. Levi and myself got there at almost 7am.
I honestly wasn't that sleepy. He got the scope and everything looked good, but as usual we have to wait on the
biopsy results to come back in a day or so. Dr Sam said if it looked ok this time, he wouldn't have to have
another one for a while. Hopefully he will continue to do good and we can get the ostomy reversed pretty soon.
--After the scope we had 4 hours to kill before clinic. I planned on sleeping in the car with him for a couple hours
so I wouldn't be sleepy on the drive home, but he was wide awake because he slept the whole way there. SOoo,
we decided to go shopping at Walmart and then get us a bite to eat before heading back to the hospital. I found
the cutest pair of shoes for him in there that I had to get. So we had a good mommy and Levi day.
--We got to clinic and there were a few changes made. First he gained weight this time. YAY! I guess the higher
calorie Elecare helped. He was 9.23kg last week and this week he was 9.56kg. That translates to about 11
ounces gained in one week. Dr Sam didn't want to change anything yet as far as increasing his window off
feeds just yet because this was the first time he'd gained in quite a while. Even though it was a significant
amount to gain. He'll probably put on a couple pounds before we have our next appointment. Doc said he may
give him a bigger window next time. We go back in 3 weeks on the 24th of this month.
--He also grew a little taller. I didn't catch how much. I just heard them say he grew a little. Which is probably
from the loss of the steroid finally catching up to him.
--Overall, the doc was very impressed. He said he'd like to give hime a Mic-Key button G tube instead of what
he has now. Basically, it just wouldn't have the tube connected like it does now. He said maybe once he has a
longer window off his feeds, then they may change it. It would be a lot nicer when he's not hooked up because
he wouldn't have the tube hanging down in the way.
--A couple other changes that were made was that they stopped his amlodipine (blood pressure med) and
Actigall (med to help keep the bile ducts from getting stopped up). They also said I could stop using the pectin
in his formula. Liquid pectin is called sure gel like you use when making jam and jelly. They added it when he
was having all the output, but said he probably doesn't need it anymore. So if anyone needs any sure gel I have
a box and a half that will go to waste. I just bought them the other day. Any of you jam or jelly makers?
--So we go back to clinic on the 24th and he has labs due next week on the 9th. Pray that we get a good lab
draw and he doesn't have to get stuck too many times.
--One other thing and I'm gonna get off here. I don't know if you remember or not when I mentioned that a few
from our church--the ones on the board of directors and a couple deacons-- were trying to get a non-profit
foundation set up for Levi to help cover medical expenses and other expenses related to Levi's transplant. Well
it was approved a while back, but we had been waiting on the final word that it was going to be tax exempt. Well,
we just got that it was a "YES" a few days ago. YAY! For a while we thought it might not happen, but the Lord
was in our favor and it finally went through. The way it is set up now is that not only will the funds be available
for Levi, but if another child comes up in our region that is dealing with the same stuff we have went through,
the funds would be available for them as well. Right now it is set up personally for Levi. I think that it would be
amazing to help someone else like ourselves. So many people have already reached out and helped us so
much this past year, I would only love to return the favor to someone else in need. The funds that will be in the
foundation will be dispersed at the discretion of the board members. It will help pay our gas to the hospital and
to doctors appointments, pay for us to eat while we are there, pay for any medical bills that might not get
covered, just about anything that has to do with Levi's well being. That really makes me feel good because
when Levi grows up, he won't be able to stay on our insurance forever and I would worry that he would worry
about how to pay for his medicines or if he would have to be hospitilized. I don't know how hard it will be for him
to get insurance on his own with the medical history he has. So flyers are in the works and there is already a
website with donation information, it just hasn't been updated yet. I'll update as soon as I know more. Hopefully
we will do good with it. Love you all--Laurie
----------------------------------------------------------------------
September 11th, 2008
Levi had labs Tuesday. Everything looked good except his BUN and potassium were slightly elevated so we had
to have some of the labs repeated today. They had come down somewhat, but they were still elevated. The
coordiinator called and said Dr Sam said it was probably from him being off of the steroid. His potassium and
sodium had become off balance. So they started him on a new medicine to help balance things out. It is called
Florinef, the generic is called Fludrocort. I'd never heard of it, but maybe it'll help. They want to do labs again
on Monday to make sure it's helping. Other than that there is nothing really going on. He's been crawling
everywhere. I love it. He's also been eating a little more. Everybody take care. Love you all.--Laurie
-------------------------------------------------------------------------
September 15th, 2008
Levi had his labs repeated again today. Poor little guy. Thank goodness they are always able to get it with the
first stick. Hopefully he won't have to get any more for 2 weeks so his veins start to heal or he may be getting
stuck more than once to get blood. My sis-in-law called me with the results earlier. She said the BUN had come
down a little more but the potassium was back where it was on Tuesday. She said the blood had started to
hemolize (clot) so that may be the reason for the high potassium. (They got blood when they first stuck him, but
it was really slow coming out so I guess it started to clot.) I haven't gotten a call yet from the coordinator so I
don't know if they'll want it drawn again or not. I really hope not.--Hey, the coordinator just called and said they
want to repeat the kidney numbers on Wednesday to see if it is still high. If it is, then they may need to increase
the dose of the new medicine they started. Urghh..
--We go back to Cincinnati next Thursday for clinic at 1pm. (By the way a friend of our's sister lives in Cincinnati
and said gas was a little over $6 a gallon there!! That was Saturday so I don't know if it has come back down
any or not. I'll have to be sure to gas up before I go. Our gas here is $4.09 hopefully it won't go any higher.) I
hope they change his feeds around some so that he gets a larger window. 5 hours is just not enough for a
crawling baby boy that likes to get into stuff. He should have gained plenty of weight this time. He'll drink some
of the formula each day. He's been drinking at least an ounce, but one day this week he chugged almost 4
ounces. I couldn't believe it. I wish he'd do that everyday because that is over 2 hours of feeds worth.
--Jacob is doing better in school. Brandon on the other hand surprised me with his midterm grades. He had a
69% in Reading. I was so surprised. He has a 15 min reading assignment to do each night after school and a
log to show he's done it. I have to sign it and he turns it in on Fridays. So I was shocked to see that grade
because he has always read and I've signed it each week. I couldn't get a straight answer why he got such a low
grade so I emailed his teacher. She told me he had only turned in 1 reading log all year so he was getting zeros
for those not turned in. I can't understand why he wouldn't turn them in. She also said he doesn't finish his work
in class and that was why he was bringing so much homework home. Brandon has always done great in school
and I thought he was doing great this year until I saw the grade. We had a long talk with him and I really hope
he's able to bring up his grade by report card time. He's much smarter than that. The only reason for it that I
could come up with was that this is his way of dealing with me being away for so long. Toby and Jacob have
both been dealing with it in thier own way. Toby refuses to be potty trained and has no problem being called a
baby and not a big boy. I guess it's his way of staying a baby. Jacob has had a really hard time going to school
and is just now getting used to it. I thought Brandon had been handling it really maturely, but Idsdddddsesddsaa
guess he had a really hard time too and this is his way of getting attention. I really hope Levi stays well so I don't
have to leave them anymore. This past year has been very hard on them not having their mommy. They are
dealing with it the best they know how.
--Well, that's all for now. i may update again after we get the kidney numbers Wednesday.
--Love you all. --Laurie
---------------------------------------------------------------------
September 25th, 2008
Oh, my, has it been 10 days since I last updated? Time flies when you're busy as a bee and enjoying life. OK let
me think of anything new that has happened over the past week and a half. Saturday was Toby's 3rd birthday.
We didn't do anything exciting, just had a good day with the family. We took the boys to the park to play and
had cake and ice cream later in the evening. Toby got a birthday surprise that made us all happy. Robin's dad
had been back in the hospital almost a month and he was discharged Saturday. We were really glad to get him
and Maw home.
--Monday Jacob "fell" off the picnic table in the back yard and hurt his arm. (When I say "fell", that means
pushed by an older brother) He kept complaining of it hurting so we stopped by After Hours and he didn't act
like it was hurting anymore when we got there so the doc said it was probably just a little tendonitis. He was fine
the rest of the evening, but he woke up at 4am crying that it hurt really bad and couldn't go back to sleep for 2
hours. He asked me to take him to the doc again so I got up and took a shower, but by the time I got out he had
fallen asleep---I guess the motrin and tylenol finally kicked in. I decided to let him sleep and then I took him back
to After Hours about 10:30am Tuesday morning. They xrayed it and only found something "questionable" on
one of the xrays. She said to wait until the radiologist looked at it to see for sure if it was broke. They gave him a
sling to wear his arm in. He hasn't complained anymore of it hurting unless you turn it a certain way since
Monday night, so we figured it wasn't broke....until yesterday. The radiologist's report came back and said that
there was a large amount of soft tissue swelling and a large amount of fluid around his elbow. They could not
see a fracture line, but with the swelling and the fluid there was a good chance it was an "occupational fracture".
I'm not sure what that means, but the radiologist recommended he see a orthopedic doc. So Robin is going to
get that set up for him. I don't know if they'll cast it or not since it seems not to be bothering him. I sent him to
school yesterday without the sling, but since it's broke, I sent him with it on today. I told his teacher that he could
take it off to write if he needed to (it's his right arm), but he definitely needed it on the playground to keep him
from doing something to hurt it worse. He's been climbing and I don't know what all outside since he hurt it. You
would never know it was broke.
--Tuesday was 200 days post transplant!!! YAY! We have come so far! I can't believe how well he is
doing. Keep up the good work Levi!
--Levi, Toby and I went to Cincinnati yesterday for Levi's clinic appointment. They said he looked GREAT! He
was gaining weight good. In fact he'd gained a pound since the last appointment 3 weeks ago. He weighs 22
pounds now! lol. They only made a couple changes to his feeds. He now gets 2 more hours off his feeds for a
total of 7 hours off. We had to go up by 2ml/hr on his rate and he has to drink at least 50ml by mouth to get the
additional 2 hours. He drinks at least 30ml a day anyway and I think with the extra time off an additional 20mls
won't be a big issue considering that he dinks that sometimes anyway. I am hoping he will get more hungry and
start eating more. They said now is the time we really have to push him to eat. They are going to get him set up
with speech to help him a push him a little in that area. Dr Sam said his platelets have finally dropped below
500,00 so if they consistently stay around 400,000-500,000 then we will be able to stop the baby aspirin. That's
all that happened at clinic. They all were impressed at how big he is getting--not just in weight, but that he's
growing up into a little man.
--Everyone take care. Hope it's not another 10 days before I update again. I will probably update Monday or
Tuesday after I get his lab results. We don't go back to Cincy until Oct 15th.
-------------------------------------------------------------------------
September 29th, 2008
Levi had to get his labs this morning. He had to get stuck twice, but we got it. The coordinator called and said
everything looked good except that darn potassium again. It was high again. She said Dr. Sam wasn't too
concerned because the result can be off if the blood started to hemolize(clot), but he does want the renal panel
repeated in one week just to be sure. So we are good until Monday.
-- I am trying to get in touch of the Children's Clinic to get him scheduled for his 1 year shots, but getting them
to answer their phone is like pulling teeth. I stayed on hold today for over 10 minutes and finally hung up. I have
a life and can't spend my whole day on hold.(The other day I spent 20 minutes without an answer.) Maybe I'll
have better luck tomorrow. It's not an emergency or anything so I'll just keep trying. He'll also have to get a flu
shot as soon as they become available and so will the rest of the family so we don't catch it and give it to him. I
really dread this upcoming cold and flu season. I am really scared he'll catch something and end up back in the
hospital. We really need your prayers to keep away all the bugs that'll be floating around.
--Levi's been getting braver everyday. He has been letting go of whatever he's holding onto and standing for a
little longer each day. We've been trying to get him to walk, but he won't hardly let go of whoever is holding him,
but.... TODAY he actually took about 3 steps by his self. YAY!! He did it when Beth (my sis-in-law) was
working with him. He did it about 4-5 times today. I was so proud. It won't be much longer before he's running all
over the place.
-- He's getting so big. You all should see him. He's developing his own little personality. He's very loving. When
he's around Beth's little girl, Maddi, he loves her to death. He lays his head on her and says, "Awwwww..."
--He's also learned to bite, so you have to watch yourself around him. He also likes to head-butt you if he's
close to your face .Toby used to be really bad to bite and it looks like Levi is taking after him. He actually bit
Toby last night and Toby said "NO! LEVI!" and I told Toby that it was payback for all the times he bit other
people.
--I am really enjoying watching him get stronger and stronger every day. It is a miracle he's even here and if you
didn't know his medical history, you'd never know he had anything so terrible happen to him. He's my angel and
the light in my life. He really puts my life into perspective. I appreciate the little things more. Not just with Levi but
with my other boys as well and also with anyone else that I care about. I read something on the internet the
other day and it really stood out to me because of the truth that was in it. It said "If God brings you to it, He'll get
you through it." AMEN! There's nothing more true. Love you all. Until next time.--Laurie and Levi
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