March 4th, 2009
Thought I would update once before next week to let you guys know the plan for next week's hospital stay (getting
ileostomy reversed!!). We are supposed to arrive on Monday the 9th and he will have his feeds stopped and have to
get "cleaned out" with a bunch of antibiotics, and then the surgery is sometime on Tuesday the 10th. I am assuming
probably in the morning, but I haven't been told exactly. The coordinator is supposed to call sometime this week to
give me some more specific details about it.
--Levi has been pretty congested for the past 3 weeks or so. Sunday night he started running a fever. I am assuming
it was from all the drainage/cold he has. He ran a fever through yesterday afternoon and hasn't had one since. I am
crossing my fingers it stays away. He hasn't thrown up except when he has gagged and coughed on the drainage.His
output hasn't changed either so I am not too worried about him getting dehydrated. He is still congested and I am
afraid it might keep him from having his surgery next week. He has another 6 or so days to get over this, just pray it
doesn't keep him from getting the surgery. I'll let you know if it is a go or no-go.
--Saturday is Levi's 1 YEAR anniversary of his transplant. PLEASE, PLEASE say a prayer for the donor family. This
time of the year has to be especially hard for them. While we are rejoicing, they will be grieving. They gave me the
greatest gift anyone could ever give: my baby boy.
--Everyone take care and I'll update again soon.
--Laurie
--------------------------------------------------------------------------
March 6th, 2009
Say a prayer for the donor family today. Today is the day they lost their little baby. They have to be hurting,
remembering what happened last year. I feel their grief and I thank them for the choice they made. Levi is alive today
because of them. We are having a small family get together tomorrow to celebrate. I ask that each of you take a
moment to remember what a gift we have received and thank God for blessing us with such a miracle.
--I do have some bad news to share. Levi's icky cold has led to his surgery getting postponed. He has a really yucky
cough and he is pretty congested. The docs felt like it was best to wait and as bad as I want him to have the surgery,
I agree with them. It will probably be rescheduled for the second week of May. That is when Robin and I get out of
school for the semester. I had planned his surgery this coming week because it is spring break. Oh well, it'll happen,
just not this soon. I am just thankful he is doing as well as he is, even if he does have a cold. He hasn't ran a fever
since Tuesday, but I have a feeling it is going to take some time for him to get over this.
--He has labs next Monday(16th) and I clinic probably on that Wednesday(18th). Thanks for stopping by. I've added
a couple more videos to my Youtube account so be sure to stop by and check them out. You won't believe how smat
he's getting. I put one of the videos at the top of this page for easy access, but you'll have to go to youtube to see
the other. We love you all. God Bless!!!
---Laurie
---------------------------------------------------------------------------
March 30th, 2009
Oh, my I am getting bad about this. Sorry guys. School and the boys keep me busy. Not to mention that Robin and I
have bought a few seasons of the X Files series and have been watching marathons every free minute we have. We
have an addiction, I'm not afraid to admit it. lol. Not to worry, everything has been going really good.
--Levi had labs a couple weeks ago. They looked good and they didn't need for him to get any more for a month. A
lump popped up on his neck last week and they wanted to do more labs just to check for viruses like CMV and EBV.
Everything came back fine and the lump has started going down. We believe it was just a swollen lymph node from
his recent cold. That cold, has since gone. If only his surgery was scheduled a week later than it was, he probably
would have been fine to have it done. Oh well, better safe than sorry. He is now scheduled for May 19th to have the
ileostomy reversal. Hopefully he won't get sick again before then.
--He also went to clinic on the 18th. They were happy with his progress and don't need to see him again until next
month. They stopped his ganciclovir which is an antiviral. They stop that one after the patient has went past 1 year.
So now Levi is only on 5 meds. That's a lot better than last year which was more like 10 or 11 meds. He still may get
rid of a couple more, but the rest he will probably be on for the rest of his life. They don't want to change anything
with his feeds until after the surgery. They said that once his ostomy is reversed, they will work towards getting him
on bolus feeds. (A large amount of feeds at one time as compared to the continuous he gets now.) I think that until
then, he's not going to eat anymore than he's eating now. He just don't feel hungry because he's getting food for the
major part of the day. He does eat about anything you give him though, just not enough.
--Levi's been talking like crazy. In the past month or so I can really tell a big difference in his mental development.
He's getting so smart. He asks for apples by saying "Ap-ple". It is so cute. He's learning a lot more too. If you get the
camera to take his picture he turns his head to the side and says "cheese!" with a big smile. Then you show him the
picture and he just laughs like it is the funniest thing in the world. He now calls Robin "Dad-dy" instead of just "dad" or
"da". It is the cutest thing when he says it. He's also been putting more than one word together. Like when Robin
goes to work he says "Bye-Bye, Dad-dy"
--On Levi's anniversary (Mar. 7th) we had cake and ice cream just for close family. Nothing outrageous. It was nice.
What a milestone!
--In a couple weeks Robin and I are going on a couple night trip for our 11th anniversary. It will be the first time I've
left Levi overnight. I hope he will do ok. I am getting nervous about it, but I'm sure he'll do fine.
--I think that's all the important stuff. I'm sure I've left out some minor stuff. It's been too long for me to remember
everything. The boys are on Spring Break this week. Hopefully it will be nice outside. We can't take a trip though
because Robin and I have school. I may be able to take them to the park a couple days if the weather is nice. Enjoy
the new pics I posted. Ain't he getting big?
--Love you all. Take care. *HUGS*---Laurie
Thought I would update once before next week to let you guys know the plan for next week's hospital stay (getting
ileostomy reversed!!). We are supposed to arrive on Monday the 9th and he will have his feeds stopped and have to
get "cleaned out" with a bunch of antibiotics, and then the surgery is sometime on Tuesday the 10th. I am assuming
probably in the morning, but I haven't been told exactly. The coordinator is supposed to call sometime this week to
give me some more specific details about it.
--Levi has been pretty congested for the past 3 weeks or so. Sunday night he started running a fever. I am assuming
it was from all the drainage/cold he has. He ran a fever through yesterday afternoon and hasn't had one since. I am
crossing my fingers it stays away. He hasn't thrown up except when he has gagged and coughed on the drainage.His
output hasn't changed either so I am not too worried about him getting dehydrated. He is still congested and I am
afraid it might keep him from having his surgery next week. He has another 6 or so days to get over this, just pray it
doesn't keep him from getting the surgery. I'll let you know if it is a go or no-go.
--Saturday is Levi's 1 YEAR anniversary of his transplant. PLEASE, PLEASE say a prayer for the donor family. This
time of the year has to be especially hard for them. While we are rejoicing, they will be grieving. They gave me the
greatest gift anyone could ever give: my baby boy.
--Everyone take care and I'll update again soon.
--Laurie
--------------------------------------------------------------------------
March 6th, 2009
Say a prayer for the donor family today. Today is the day they lost their little baby. They have to be hurting,
remembering what happened last year. I feel their grief and I thank them for the choice they made. Levi is alive today
because of them. We are having a small family get together tomorrow to celebrate. I ask that each of you take a
moment to remember what a gift we have received and thank God for blessing us with such a miracle.
--I do have some bad news to share. Levi's icky cold has led to his surgery getting postponed. He has a really yucky
cough and he is pretty congested. The docs felt like it was best to wait and as bad as I want him to have the surgery,
I agree with them. It will probably be rescheduled for the second week of May. That is when Robin and I get out of
school for the semester. I had planned his surgery this coming week because it is spring break. Oh well, it'll happen,
just not this soon. I am just thankful he is doing as well as he is, even if he does have a cold. He hasn't ran a fever
since Tuesday, but I have a feeling it is going to take some time for him to get over this.
--He has labs next Monday(16th) and I clinic probably on that Wednesday(18th). Thanks for stopping by. I've added
a couple more videos to my Youtube account so be sure to stop by and check them out. You won't believe how smat
he's getting. I put one of the videos at the top of this page for easy access, but you'll have to go to youtube to see
the other. We love you all. God Bless!!!
---Laurie
---------------------------------------------------------------------------
March 30th, 2009
Oh, my I am getting bad about this. Sorry guys. School and the boys keep me busy. Not to mention that Robin and I
have bought a few seasons of the X Files series and have been watching marathons every free minute we have. We
have an addiction, I'm not afraid to admit it. lol. Not to worry, everything has been going really good.
--Levi had labs a couple weeks ago. They looked good and they didn't need for him to get any more for a month. A
lump popped up on his neck last week and they wanted to do more labs just to check for viruses like CMV and EBV.
Everything came back fine and the lump has started going down. We believe it was just a swollen lymph node from
his recent cold. That cold, has since gone. If only his surgery was scheduled a week later than it was, he probably
would have been fine to have it done. Oh well, better safe than sorry. He is now scheduled for May 19th to have the
ileostomy reversal. Hopefully he won't get sick again before then.
--He also went to clinic on the 18th. They were happy with his progress and don't need to see him again until next
month. They stopped his ganciclovir which is an antiviral. They stop that one after the patient has went past 1 year.
So now Levi is only on 5 meds. That's a lot better than last year which was more like 10 or 11 meds. He still may get
rid of a couple more, but the rest he will probably be on for the rest of his life. They don't want to change anything
with his feeds until after the surgery. They said that once his ostomy is reversed, they will work towards getting him
on bolus feeds. (A large amount of feeds at one time as compared to the continuous he gets now.) I think that until
then, he's not going to eat anymore than he's eating now. He just don't feel hungry because he's getting food for the
major part of the day. He does eat about anything you give him though, just not enough.
--Levi's been talking like crazy. In the past month or so I can really tell a big difference in his mental development.
He's getting so smart. He asks for apples by saying "Ap-ple". It is so cute. He's learning a lot more too. If you get the
camera to take his picture he turns his head to the side and says "cheese!" with a big smile. Then you show him the
picture and he just laughs like it is the funniest thing in the world. He now calls Robin "Dad-dy" instead of just "dad" or
"da". It is the cutest thing when he says it. He's also been putting more than one word together. Like when Robin
goes to work he says "Bye-Bye, Dad-dy"
--On Levi's anniversary (Mar. 7th) we had cake and ice cream just for close family. Nothing outrageous. It was nice.
What a milestone!
--In a couple weeks Robin and I are going on a couple night trip for our 11th anniversary. It will be the first time I've
left Levi overnight. I hope he will do ok. I am getting nervous about it, but I'm sure he'll do fine.
--I think that's all the important stuff. I'm sure I've left out some minor stuff. It's been too long for me to remember
everything. The boys are on Spring Break this week. Hopefully it will be nice outside. We can't take a trip though
because Robin and I have school. I may be able to take them to the park a couple days if the weather is nice. Enjoy
the new pics I posted. Ain't he getting big?
--Love you all. Take care. *HUGS*---Laurie
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