May 5th, 2008 8:30pm (Cinco de Mayo)
Have you missed me? It's only been a few days, but I am so used to updating much more often. I have a lot to
update so get ready. A lot has happened the last few days.
--First of all my mammaw's funeral was beautiful. There were a lot of people showed up. She touched a lot of
people's lives. She already is terribly missed. She was one strong woman that held her famliy together. My
grandpa died in '74 and she had to raise the kids on her own after that. It was good seeing all my family again.
They all said Levi looked so good. Levi didn't know what to think with all those people coming around him. At
the visitation we sat outside for the majority of the time because I didn't want him catching something. Just me
and him went with my sister. They had blankets that she had made over the pews. It looked alot like her
house. She would've loved it. I'm missing her so much.
--OK now that all the sad news is out of the way: I have quite a bit of good news.
The boys were here for the weekend. We went to the Cincinnati Zoo on Saturday. It rained that morning, but
cleared up after lunch so we decided to go. However, right before we left it started raining on us at the zoo. It
lasted just a little while though. The boys really had a good time. Jacb is really into Rhinos right now. He gets
mad and he says, he's "mad as a rhino". And he's nicknamed himself "Rhino-Charger". Who knows where
these kids get this stuff, but it sure makes life worth living. Anyway he got to see some real rhinos. They all
had fun. It was awesome having a normal family day! Levi has 4 hours off from his feeds now, so we spent
that whole time at the zoo. I can't tell you how great it feels not having to worry about cords getting hung and
making sure he has enough feeds.
--We spent yesterday afternoon at the play area outside. It was a BEAUTIFUL day. It couldn't have been more
perfect. I was really worried about Levi getting sunburnt. I had a hat on him and draped a blanket over him
and we sat in the shade under the weeping willow for a while. Unfortunately, me and Robin weren't thinking of
ourselves. We both got burnt. His was worse than mine because he sat in the sun the whole time and I was in
the shade for a while. His arms and the back of his neck were bright red. He's part albino I think. lol. He
always burns and burns bad.
--Also on Saturday, after we went to the zoo, we drove down to Lexington to visit Robin's dad (Paw). He's
looking good. I think he gets a little frustrated because he has a hard time communicating. He has been
practicing sign language. Brandon quizzed him on the colors. It was sweet. I told Brandon he would have to
learn it too so he would know what Paw was saying. He had been writing on paper, but we bought him a dry
erase board. I think that will work better for him. Robin also got him a bell. He worries he won't be able to get
Maw's attention, so I think that made him feel better. I am sure Robin's mom is really thanking Robin for that
one. lol. I really think the visit brought up his spirits. I hadn't seen either of them since before Levi had his
transplant. I was missing them. They really enjoyed seeing Levi. They hadn't seen him since the transplant
either. It was a really good day.
--Last week the doc gave Levi a window of 4 hours. It is really nice.
--He had his scope and biopsies today. Everything looked good. He also had labs this morning. At the scope,
doc seemed a little concerned. Emphasis on little. He said his labs suggested he was a little dehydrated. He
asked if he'd been pooping more or peeing. I said nothing has really changed. He wanted to give him just a
little extra fluid to be on the safe side. So we had to stay a couple of hours extra to get the bolus. No biggie. I
didn't have plans anyway. He said his tacro level (immunosuppresant) was low. He said they would probably
be upping the dose. Another good thing is that his 1 IV med goes to a pill form tomorrow. Now the only time he
will get IV meds is on scope days, he has to get an antibiotic. It will be saving me a lot of hassel.
--We get a visit from a speech therapist tomorrow. I'll let you know how that goes. I think that's all for now. I
think you're caught up. Love you all. Thanks for you prayers for my family.
--Be sure to check out the new videos I uploaded to YouTube.--Laurie
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May 7th, 2008 2pm
Hey, guys! Well the biopsies from Monday showed a small amount of rejection. She called it grade 1, whatever
that means. It apparently isn't that bad because they didn't change his steroid and his next scope is on
Monday as usual. The doc did go up on his immunosuppressant dose, but he decided that based on the level
in his blood, before he had the results of the biopsies. His range is supposed to be 12-18 and his was 7 on
Monday. It had been hovering around 12-13 area so it was probably a good decision to up the dose. He had
his renal panel (kidney test) done again yesterday to see how the bolus helped. The coordinator called and
said he still looked a little dry.She said instead of giving him the 4 hours off of his feeds, to keep them running
24 hours. I'm not sure for how long. We have clinic and labs tomorrow, so I am sure that will depend on the
results. He may go back to having a window off his feeds. Oh, yeah, I forget to tell you Monday, but we started
his feeds through the G-tube Monday evening. SO FAR, SO GOOD!!! I am very surprised. I was really afraid
he wouldn't tolerate it. I am very happy that he is. The NJ (in his nose) will probably be able to come out soon.
That's all we were using it for was feeds. I hope they let us take it out tomorrow. I will not be sad to see that
thing go. It will be so nice to see his beautiful face without the tube in his nose and tape on his cheek.
--He had a bit of blood in his diaper last night, so I put in a call to the fellow on call. I was pretty sure it was
from the biopsies, but wanted to let them know about it anyway. She said just watch it and let them know if it
continues. It hasn't, he only had the one episode last night. Like I said, I wasn't too concerned, but felt that it
was sometyhing they needed to be aware of. He's bled before after scopes and biopsies, but it's usually right
afterwards and this was the next day.
--Mother's day is coming up. I won't get to be with the boys because Robin works this weekend. I am just glad
they are well taken care of and I'll have my miracle baby here with me to keep me company.
--We had a few visitors today. Our preacher and his wife and another lady from out church came up and
visited us for a while. I was nice to see them. They have been there for us from the day Levi was born. I really
appreciate everything they have done for us. Love you guys! Science Hill Christian Church has the most
caring people. They are like family to us. Love you all very much. I sent a pic with Charles to put on the
bulleting board of Levi and Duelly took some really good ones of Charles holding him. Levi was quite the
entertainer. He would shake his head yes or no in response to them asking him something. It was very cute.
--I guess that's all. Love ya...Laurie
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May 14th, 2008 1pm
Oh, my gosh! I just realized it's been a week since I updated last. It doesn't seem like that long. Sorry guys! No
news is good news! But quite a bit has happened since I updated last. I had to read what i wrote last to see
what all I need to update on. He had clinic last Thursday. He looked good. He's still gaining weight really good.
His labs looked a lot better. His immunosuppressant level came up(11.7)--(range 12-18) which is good. He's
had a bit of allergies/congestion and coughing, but the doc said his lungs sounded clear on Thursday. Since
then his drainage and coughing has been causing him to thow up sometimes. He also seems to be breathing
a little harder I think because of his congestion. I will be sure to mention it at clinic tomorrow. His feeds are still
going for 24 hours so we don't have a window anymore of freedom. Oh, well.
--I had a really good Mother's Day weekend. It was rainy and dreary so me and Levi laid around and slept
both days. It was a lazy weekend. Sunday evening Robin came up with the boys, well, 2 of them. Brandon still
has school and he had to stay home. They brought me white roses and a card and Brandon sent a picture
frame he made at school for me. It was so sweet. He also made me a card. I love my boys so much. They are
so sweet and loving. Robin had to go back home this morning, but he left Jacob and Toby with me. I like
having them around. Robin will be back this weekend with Brandon.
--Monday, Levi had another scope and biopsies. Everything looked good and the biopsies looked perfect. So
we went down on the steroid again. Also they took out the NJ (YEA!!!)while we were in the OR for the scope.
(Don't freak out, they do the scopes in an OR). His immunosuppressant was up even more, but the doc was
ok with the level. It was 16, so still within the range.
--Also Monday we found a park that's really close. We had to drive but it was only a few miles down the raod. It
was beautiful. There was a duck pond, a waterfall, trails to walk, a play area. I hope it's pretty this weekend so
we can take Brandon back there. He is also wanting to go back to the zoo. So say a prayer for a pretty
weekend. My brother, his wife, my nephew and my 2 sisters are also coming this weekend, so it should be fun.
I hope to get a picture of all of us.
--Levi had occupational thereapy last week. It was very helpful for me and Robin. He showed us different
things to work with Levi on to strengthen his abdominal muscles. He also said he needs to spend more time in
the floor. That it was crucial to getting to crawl and all those movements help in walking. He will have
occupational therapy once a week. He will have speech once a week and probably physical therapy once a
week as well.
--He had his second session of speech yesterday. She talkied to the doc and he only wants him trying meats
right now. And only tasting, not to try to get him to eat a large volume. She didn't have any meats yesterday
so we used carrots. He tolerated it very well. She would dip his pacifier in the carrots and then she would put it
in his mouth. He did about 5 dips. She said she would also ask about letting him try liquids like water from a
cup.
--He will have his 1st session of physical therapy on Friday. I am pretty sure they will probably do a lot of the
same things as OT. And he will have his 2nd session of Ot probably tomorrow.
--I think that's all that is new that's happened the past week. I'll try not to go as long in between updates this
time. You all were probably wondering what was up. Everyone take care. Love you all!--.Laurie
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May 15th, 2008 6:30pm
We had clinic today. We were there from 1:30 until 4:30. I had Jacob and Levi with me alone with Levi in a
small cramped room. Need I say more? They got very bored.
-- Levi has been huffing and puffing along with some runny nose and coughing for the past week or so. The
doc said it was probably asthma. He had to get a RSV test and we had to wait on a respiratory therapist to
show me how to use an inhaler. We also had to get an xray to rule out pneumonia. The results showed no
pneumonia so it is RAD(reactive airway disease) or in other words, asthma. Robin had it when he was
younger and his dad has experienced it too. Levi has to use the inhaler every 4 hours.
--Other than that the appointment went well. They said he is getting very chunky. The doc is giving him a 4
hour window off his feeds again. He is gaining more than an ounce a day! He's up to 17 pounds 10 ounces.
He just weighed 16 pounds 14 ounces last week!!! He is getting fat rolls everywhere. The doc said he just
doesn't need that many calories or fluid. He said the less fluid he will be getting should help with his blood
pressure and some of his spitting up. He said he is just getting too much volume.
--We are supposed to get physical thereapy tomorrow morning and my brother and sisters should be here in
the evening. Robin will be here sometime Saturday with my biggest baby, Brandon. So I probably won't be
back on to update for a few days unless something comes up. He will have labs again on Monday and his next
scope isn't until Wednesday and Clinic is on Thursday next week. Speech therapy will be on Tuesday.
--Love you all. Take care and wish me luck with these wild boys. They been here since Monday and I'm not
used to all their wild ways and they can get a little stir crazy in this small room (they aren't going back until
Sunday) I'll miss them when they're gone. I'm just used to me and Levi and it being quiet and calm..--Laurie
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May 19th, 2008 11:30am
What a week! The boys drained all my energy. What a blessing it was to have them here. Also my brother and
my sisters were here over the weekend. Brandon got to come too. We went to the park on Saturday and fed
the ducks and Sunday we went to the zoo. My 2 sisters came too. It was a beautiful weekend. We got lots of
pictures. They were all gone by yesterday evening. It got so quiet. I miss them already. Robin will be back
Wednesday, but I don't think any of the boys are coming.
--His breathing has been better since Thursday. He's been using the inhaler every 4 hours except at night
when he's sleeping. He's still got a bit of a cough, but hopefully that will improve. I think it was all triggered by
the allergens in the air. Me and Robin both have been fighting with stuffy noses and itchy eyes.
--He had labs this morning, but I just checked and not all the results are back. The CBC was about the only
thing. The one I am interested in is the Prograf level. It usually takes a little longer for that one to come back.
--He's been handling the 4 hours off really well. Hopefully he won't get dry this time and won't need any extra
fluid.
--I think that's all for now. He has speech tomorrow and physical therapy and a scope on Wednesday. Clinic
will be Thursday. So as you can see, a busy week is ahead. We have to walk over later to the hospital to pick
up a couple of refills of his meds. Love you all! Take care.-- Laurie
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May 22nd, 2008 11:45pm
Life's good here at the Ronald McDonald. We've had a busy week. Things are looking good for getting to
come home soon. The scope looked good yesterday so we went down on the steroid again. Labs from today
were good. His breathing is so much better now and Dr. Sam said he didn't think he needed to use the inhaler
anymore. Oh, the viral test they did last week said he had a form of the flu. He was really impressed at how
well he got over it. The flu was what was causing all his congestion and wheezing and stuff. He is back to
normal today except for a little cough.
squash and sweet potatoes and he didn't act like he wanted anything to do with either. Everytime she would
get close to his mouth he would squinch up his face and turn his head. It was funny to watch. Sh also does a
few sign language things when she's talking to him. I'm trying to watch close so I can do it too. I've learned
"more", "music"and "on".(I was giving him a bath today and I had Robin look up 'water' on the internet so I
could use that one when we're doing bathtime. I think I'll start studying some more signs. She does more than
try the food. She reads books and plays with toys with him. She sings to him. I guess there's a lot involved in
speech. They've told me that eating and the muscles involved play a part in our speaking.
--We had clinic today and got some encouraging news. He said they had been talking about when they
thought we could go home. He said he is still on a pretty good dose of steroid and he wants him here while
they lower it, but maybe in the next 2-4 weeks. YEA!! He said they will be taking him off the fluconazole(an
antifungal) in 2 weeks. He said when they take him off, they have to watch his Tacro/Prograf level really close
for a week or so because the Prograf level tends to go up when they are taken off the antifungal. So that will
be 3 weeks from now. That will get us home before his birthday! YEA!! Finally some idea of when we can go
home. This all depends on how well he does between now and then. I need to start planning that big
WELCOME HOME/BITHDAY PARTY!
--I tried some chicken and gravy baby food with him today and he seemed ok with it. He didn't squinch up his
face at it and he didn't gag. I guess that's a plus. BUT he made a HUGE mess! He had it everywhere. I like to
see that.
--ALSO I gave him his first haircut today. I had to. The poor little thig had a really bad comb over and it was
hanging down past his eyes. I couldn't stand it any longer. Robin OK'd it. Now he still has a comb over, but it's
just shorter. He looks like a little man. I'll get a pic posted soon.
__Talk to ya later. Love ya! --Laurie
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May 23rd, 2008 11:20pm
I just wanted to update real quick before I went to bed. I been working on his site this evening. I have found a
new guestbook to start using. I don't know if it will be better or worse than the one I am using now, but it's
worth a try. Just click the new link at the top and try it out. I really need your input, so let me know.
--Levi had physical therapy today. He did excellent. She made goals for him last week. This week she said
he's already meeting those goals and she's gonna have to make new ones. She said that's a good thing. He's
now bearing weight on his legs. It's amazing. He's just started doing this over the past week or so. I think he is
just feeling stronger and wanting to get around. He is also starting to enjoy time on his tummy which didn't
used to be something he liked at all. He sits really well and can lean and he balances his self really well. She
said just keep working on his arm and chest muscles when he is on his belly. She said, try to get him to raise
his chest and head up when he's on his belly. He wiggles all over the bed, but I'm still not comfortable letting
him play in the floor yet (maybe if it was carpet), but he's still a little wobbly when he's sitting and goes to
reach for things. In fact today when I was taking his picture he fell and bumped his head. AND this evening he
slid over the edge of the bed and hit his head on the hard floor. He has a big pump-knot on the top, but he
seems ok. I was sitting right next to him. I felt terrible, but it happens. I had 3 wiggle worms before him. He just
worries me more, I guess.
--I hope you like the new pics of his new haircut. Love you all, nitey nite, Laurie
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May 26th, 2008 10:05am
Good morning. Everything is going really good. The weekend was uneventful. Levi is doing so good. He is
acting like a usual baby. Seems like over the past couple of weeks he's making some really big strides in his
progress toward crawling. He's doing really good on his belly, in fact, he can go from sitting to on his belly with
no problem. He is even doing what the physical therapist wanted him to do. He is getting up on his hands and
knees, getting his chest off the ground. I don't think it will be much longer before he figures out how to move
those chubby little legs and go. You can just see the determination in him. He wants to do it so bad. His legs
are getting stronger and stronger every day. He can hold his weight standing as long as I am holding him
balanced. He's becoming a normal kid.(You know what I mean) I can't explain how that makes me feel. I am
just beside myself. He's finally getting to a point where he wants to do these things and feels like doing these
things. It's just amazing is all I can say.
--Something else that is awesome is that he's been taking sips from a sippy cup. Well, I shouldn't say sips, I
should say drops, but hey, it's a start. He's been having speech and she said to try water in a sippy cup. He
absolutely loves it. He's only getting a few drops, but he gets so excited when I say "drink" or "water". I've been
signing when I say them too. He gets so excited and starts shaking his hands and feet. I love it. He's not so
enthusiastic about the baby food, but we're getting there. I gave him chicken the other day and carrots the
next. He wasn't jumping out of his seat, but he got a few tastes and didn't throw up. He smacks his mouth
when he gets a taste. We got a lot of work ahead, but he's doing good.
--Speaking of doing good. Robin's dad is also doing good. He finally made it back to Somerset. He's still in the
hospital, but on the rehab floor. It's so much nicer having him closer to home. Robin went to see him over the
weekend and I called while he ws there. Me and Robin hung up, but Robin's dad made Robin call me back
because he wanted to talk to me. He told me to give Levi a kiss for me(Robin had to tell me what he said), but
he also said "I love you" and I understood that. It brought tears to my eyes. It was so good to hear him talk. He
is doing really well. He still has a lot of therapy to go through as does Levi, but his determination will get him
through. They both will pull through because they are both fighters. I can't wait for him and Levi to get home.
Both of them have been through so much. They are proof that God listens to prayers if ever there was proof
to be found. So thank you all from the bottom of my heart.
--Levi had labs this morning, but I haven't looked at the results yet. They probably won't be back until later this
afternoon. He has his scope tomorrow at 12 and is supposed to have speech later in the afternoon. Physical
therapy is Wednesday and clinic and Occupational therapy is Thursday. So another busy week.
--The boys are here now. Robin drove them up last night. They are only here for the day because Brandon
has school tomorrow. He just has 2 days left. He is gonna come stay with me probably this weekend. He
should be a good little helper if he don't get too bored.
--Until later. Be sure to sign the new guestbook. If you don't think I have your email, leave it with the message.
I am working on a notification list so I can send and email when I update. I am sure you all would appreciate
that. Take care and I love you all.--Laurie
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May 28th, 2008 4pm
Hey guys! Just a quick update today. His scope was yesterday. Today they called and said that no sign of
rejection so we are going down on the steroid again. Although, they did see signs of enterocolits which is
inflamation of the bowel. They said it might be from a virus. Also this morning and yesterday I noticed him
breathing fast again. I called the office and they said to use the inhaler. I gave him a couple of puffs this
morning and he seems alot better. The office just called a few minutes ago and asked how the inhaler helped
and I said he seems better. So they said to use it 4 times a day.
--He had physical therapy this morning. He, yet again, met several of the goals she set for him last week. She
hasn't really been doing anything with him. She said she didn't want to intervene if he was making good
progress on his own. So basically all she does is watch and see what all he is able to do and recommends to
me things to be aware of and work on. And she also sets new goals to replace the ones he's met. He is able to
get on his hands and knees by himself now! It won't be long before he takes off. One of his next goals is
crawling and standing while holding on to furniture.
--Yesterday he had speech. She was also impressed. He's making the "B" sound now. He just started
yesterday morning going, "buh, buh, buh,". I was in the bathroom and had to peek around the corner at him to
make sure I heard right. He jabbered the whole time she was here and ate some chicken. He did really good.
Today he nibbled on a Townhouse cracker.I don't know if I mentioned it, but he LOVES water. He don't get
more than a few drops down, but he loves putting it in his mouth. I am so proud of him. He's doing so great in
everything!!
--We are supposed to have labs in the morning at 8:30 and occupational therapy is coming at 9:30. We also
have clinic at 1:30pm. I'm hoping that he's put on enough weight that we can increase his window off of the
feeds.
--Take care.Love ya! Thanks to everyone that's signed the guestbook. I appreciate it. I think I like this one
better. Later--Laurie
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May 30th, 2008 1:30pm
Levi is 12 weeks post-transplant today! He will be 11 months old on Sunday!!
--I have a secret. It's kind of a spur of the moment thing. Robin's driving up tonight with the boys and tomorrow
morning he's driving us back home!!! YEA! It's just for one night. The secret is I didn't tell the docs, but I'm
sure they'd be ok with it if they knew. He doesn't ever have anything going on during the weekend so it's not
like they'll miss him being gone. He's doing really good, so I know he'll be fine. It will be so good to get home
and see everybody. I don't plan on doing much visitting. I just wanna spend the time with the family and enjoy
the weekend. Maybe we can even have a cookout. Also Robin's dad is supposed to come home today!!! He is
doing really good. The docs said he is ready to come home. I can't wait to see him. It will be the first time we
have been together as a family since before Christmas. Either Levi or Robin's dad have been in and out of
the hospital since then. CAN'T WAIT!
--Levi had clinic yesterday. It went well. We now have a 6 hour window off feeds. I been working with him
eating baby food. He's diggin' the chicken pretty good. He still isn't getting much, but I think he's improving
since we started. AND he's loving the water!
--We are continuing the inhaler 4 times a day. He said it was probably asthmatic bronchitis (but everyone calls
that reactive airway disease). He sounds better, but is still breathing hard and fast. He also said the
enterocolitis (inflammation of the bowel) that showed on the biopsy looked like a virus, but all the viral tests
came back negative. The good thing is that there was no rejection. Nothing was said about going home
sooner. Just that he wants his Prograf level to be stable for a while after they take him off the fluconazole
(which will be next week) and they also want him to be almost off the steroid. So hopefully another few weeks
will be all.
---Do you like Levi's transformation over the last year? Amazing huh? What a fighter!!! He is the light in my
life....well, one of 4. Just looking at all he's been through and seeing that beautiful smile, helps me understand
how prayer works. God is truly great and Levi is definitely proof. I hope you can all take a piece of this and
gain that knowledge as well. Through heartache and tragedy, God is there. He may not give you what you
pray for, but he answers prayers. What I mean is, when we thought Levi was going to die, we prayed for him to
be all better, just to be able to keep him just a little longer, we prayed for a miracle. Our journey may not be
exactly what we had in mind, we have gotten more than we could've ever asked for. Not only have we gotten
to keep him here with us, but we've gained friends and a deep appreciation for life and what's important in it.
So when you see us, don't feel sorry for us, don't have pity for us. If anything you should be jealous of what
has come out of this whole situation. I wish you could feel the peace and happiness I feel right now. The world
would be a better place if everyone took a minute to realize that God is always there, you just have to believe
in Him.
--Everyone take care. Love you all.--Laurie
Have you missed me? It's only been a few days, but I am so used to updating much more often. I have a lot to
update so get ready. A lot has happened the last few days.
--First of all my mammaw's funeral was beautiful. There were a lot of people showed up. She touched a lot of
people's lives. She already is terribly missed. She was one strong woman that held her famliy together. My
grandpa died in '74 and she had to raise the kids on her own after that. It was good seeing all my family again.
They all said Levi looked so good. Levi didn't know what to think with all those people coming around him. At
the visitation we sat outside for the majority of the time because I didn't want him catching something. Just me
and him went with my sister. They had blankets that she had made over the pews. It looked alot like her
house. She would've loved it. I'm missing her so much.
--OK now that all the sad news is out of the way: I have quite a bit of good news.
The boys were here for the weekend. We went to the Cincinnati Zoo on Saturday. It rained that morning, but
cleared up after lunch so we decided to go. However, right before we left it started raining on us at the zoo. It
lasted just a little while though. The boys really had a good time. Jacb is really into Rhinos right now. He gets
mad and he says, he's "mad as a rhino". And he's nicknamed himself "Rhino-Charger". Who knows where
these kids get this stuff, but it sure makes life worth living. Anyway he got to see some real rhinos. They all
had fun. It was awesome having a normal family day! Levi has 4 hours off from his feeds now, so we spent
that whole time at the zoo. I can't tell you how great it feels not having to worry about cords getting hung and
making sure he has enough feeds.
--We spent yesterday afternoon at the play area outside. It was a BEAUTIFUL day. It couldn't have been more
perfect. I was really worried about Levi getting sunburnt. I had a hat on him and draped a blanket over him
and we sat in the shade under the weeping willow for a while. Unfortunately, me and Robin weren't thinking of
ourselves. We both got burnt. His was worse than mine because he sat in the sun the whole time and I was in
the shade for a while. His arms and the back of his neck were bright red. He's part albino I think. lol. He
always burns and burns bad.
--Also on Saturday, after we went to the zoo, we drove down to Lexington to visit Robin's dad (Paw). He's
looking good. I think he gets a little frustrated because he has a hard time communicating. He has been
practicing sign language. Brandon quizzed him on the colors. It was sweet. I told Brandon he would have to
learn it too so he would know what Paw was saying. He had been writing on paper, but we bought him a dry
erase board. I think that will work better for him. Robin also got him a bell. He worries he won't be able to get
Maw's attention, so I think that made him feel better. I am sure Robin's mom is really thanking Robin for that
one. lol. I really think the visit brought up his spirits. I hadn't seen either of them since before Levi had his
transplant. I was missing them. They really enjoyed seeing Levi. They hadn't seen him since the transplant
either. It was a really good day.
--Last week the doc gave Levi a window of 4 hours. It is really nice.
--He had his scope and biopsies today. Everything looked good. He also had labs this morning. At the scope,
doc seemed a little concerned. Emphasis on little. He said his labs suggested he was a little dehydrated. He
asked if he'd been pooping more or peeing. I said nothing has really changed. He wanted to give him just a
little extra fluid to be on the safe side. So we had to stay a couple of hours extra to get the bolus. No biggie. I
didn't have plans anyway. He said his tacro level (immunosuppresant) was low. He said they would probably
be upping the dose. Another good thing is that his 1 IV med goes to a pill form tomorrow. Now the only time he
will get IV meds is on scope days, he has to get an antibiotic. It will be saving me a lot of hassel.
--We get a visit from a speech therapist tomorrow. I'll let you know how that goes. I think that's all for now. I
think you're caught up. Love you all. Thanks for you prayers for my family.
--Be sure to check out the new videos I uploaded to YouTube.--Laurie
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May 7th, 2008 2pm
Hey, guys! Well the biopsies from Monday showed a small amount of rejection. She called it grade 1, whatever
that means. It apparently isn't that bad because they didn't change his steroid and his next scope is on
Monday as usual. The doc did go up on his immunosuppressant dose, but he decided that based on the level
in his blood, before he had the results of the biopsies. His range is supposed to be 12-18 and his was 7 on
Monday. It had been hovering around 12-13 area so it was probably a good decision to up the dose. He had
his renal panel (kidney test) done again yesterday to see how the bolus helped. The coordinator called and
said he still looked a little dry.She said instead of giving him the 4 hours off of his feeds, to keep them running
24 hours. I'm not sure for how long. We have clinic and labs tomorrow, so I am sure that will depend on the
results. He may go back to having a window off his feeds. Oh, yeah, I forget to tell you Monday, but we started
his feeds through the G-tube Monday evening. SO FAR, SO GOOD!!! I am very surprised. I was really afraid
he wouldn't tolerate it. I am very happy that he is. The NJ (in his nose) will probably be able to come out soon.
That's all we were using it for was feeds. I hope they let us take it out tomorrow. I will not be sad to see that
thing go. It will be so nice to see his beautiful face without the tube in his nose and tape on his cheek.
--He had a bit of blood in his diaper last night, so I put in a call to the fellow on call. I was pretty sure it was
from the biopsies, but wanted to let them know about it anyway. She said just watch it and let them know if it
continues. It hasn't, he only had the one episode last night. Like I said, I wasn't too concerned, but felt that it
was sometyhing they needed to be aware of. He's bled before after scopes and biopsies, but it's usually right
afterwards and this was the next day.
--Mother's day is coming up. I won't get to be with the boys because Robin works this weekend. I am just glad
they are well taken care of and I'll have my miracle baby here with me to keep me company.
--We had a few visitors today. Our preacher and his wife and another lady from out church came up and
visited us for a while. I was nice to see them. They have been there for us from the day Levi was born. I really
appreciate everything they have done for us. Love you guys! Science Hill Christian Church has the most
caring people. They are like family to us. Love you all very much. I sent a pic with Charles to put on the
bulleting board of Levi and Duelly took some really good ones of Charles holding him. Levi was quite the
entertainer. He would shake his head yes or no in response to them asking him something. It was very cute.
--I guess that's all. Love ya...Laurie
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May 14th, 2008 1pm
Oh, my gosh! I just realized it's been a week since I updated last. It doesn't seem like that long. Sorry guys! No
news is good news! But quite a bit has happened since I updated last. I had to read what i wrote last to see
what all I need to update on. He had clinic last Thursday. He looked good. He's still gaining weight really good.
His labs looked a lot better. His immunosuppressant level came up(11.7)--(range 12-18) which is good. He's
had a bit of allergies/congestion and coughing, but the doc said his lungs sounded clear on Thursday. Since
then his drainage and coughing has been causing him to thow up sometimes. He also seems to be breathing
a little harder I think because of his congestion. I will be sure to mention it at clinic tomorrow. His feeds are still
going for 24 hours so we don't have a window anymore of freedom. Oh, well.
--I had a really good Mother's Day weekend. It was rainy and dreary so me and Levi laid around and slept
both days. It was a lazy weekend. Sunday evening Robin came up with the boys, well, 2 of them. Brandon still
has school and he had to stay home. They brought me white roses and a card and Brandon sent a picture
frame he made at school for me. It was so sweet. He also made me a card. I love my boys so much. They are
so sweet and loving. Robin had to go back home this morning, but he left Jacob and Toby with me. I like
having them around. Robin will be back this weekend with Brandon.
--Monday, Levi had another scope and biopsies. Everything looked good and the biopsies looked perfect. So
we went down on the steroid again. Also they took out the NJ (YEA!!!)while we were in the OR for the scope.
(Don't freak out, they do the scopes in an OR). His immunosuppressant was up even more, but the doc was
ok with the level. It was 16, so still within the range.
--Also Monday we found a park that's really close. We had to drive but it was only a few miles down the raod. It
was beautiful. There was a duck pond, a waterfall, trails to walk, a play area. I hope it's pretty this weekend so
we can take Brandon back there. He is also wanting to go back to the zoo. So say a prayer for a pretty
weekend. My brother, his wife, my nephew and my 2 sisters are also coming this weekend, so it should be fun.
I hope to get a picture of all of us.
--Levi had occupational thereapy last week. It was very helpful for me and Robin. He showed us different
things to work with Levi on to strengthen his abdominal muscles. He also said he needs to spend more time in
the floor. That it was crucial to getting to crawl and all those movements help in walking. He will have
occupational therapy once a week. He will have speech once a week and probably physical therapy once a
week as well.
--He had his second session of speech yesterday. She talkied to the doc and he only wants him trying meats
right now. And only tasting, not to try to get him to eat a large volume. She didn't have any meats yesterday
so we used carrots. He tolerated it very well. She would dip his pacifier in the carrots and then she would put it
in his mouth. He did about 5 dips. She said she would also ask about letting him try liquids like water from a
cup.
--He will have his 1st session of physical therapy on Friday. I am pretty sure they will probably do a lot of the
same things as OT. And he will have his 2nd session of Ot probably tomorrow.
--I think that's all that is new that's happened the past week. I'll try not to go as long in between updates this
time. You all were probably wondering what was up. Everyone take care. Love you all!--.Laurie
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May 15th, 2008 6:30pm
We had clinic today. We were there from 1:30 until 4:30. I had Jacob and Levi with me alone with Levi in a
small cramped room. Need I say more? They got very bored.
-- Levi has been huffing and puffing along with some runny nose and coughing for the past week or so. The
doc said it was probably asthma. He had to get a RSV test and we had to wait on a respiratory therapist to
show me how to use an inhaler. We also had to get an xray to rule out pneumonia. The results showed no
pneumonia so it is RAD(reactive airway disease) or in other words, asthma. Robin had it when he was
younger and his dad has experienced it too. Levi has to use the inhaler every 4 hours.
--Other than that the appointment went well. They said he is getting very chunky. The doc is giving him a 4
hour window off his feeds again. He is gaining more than an ounce a day! He's up to 17 pounds 10 ounces.
He just weighed 16 pounds 14 ounces last week!!! He is getting fat rolls everywhere. The doc said he just
doesn't need that many calories or fluid. He said the less fluid he will be getting should help with his blood
pressure and some of his spitting up. He said he is just getting too much volume.
--We are supposed to get physical thereapy tomorrow morning and my brother and sisters should be here in
the evening. Robin will be here sometime Saturday with my biggest baby, Brandon. So I probably won't be
back on to update for a few days unless something comes up. He will have labs again on Monday and his next
scope isn't until Wednesday and Clinic is on Thursday next week. Speech therapy will be on Tuesday.
--Love you all. Take care and wish me luck with these wild boys. They been here since Monday and I'm not
used to all their wild ways and they can get a little stir crazy in this small room (they aren't going back until
Sunday) I'll miss them when they're gone. I'm just used to me and Levi and it being quiet and calm..--Laurie
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May 19th, 2008 11:30am
What a week! The boys drained all my energy. What a blessing it was to have them here. Also my brother and
my sisters were here over the weekend. Brandon got to come too. We went to the park on Saturday and fed
the ducks and Sunday we went to the zoo. My 2 sisters came too. It was a beautiful weekend. We got lots of
pictures. They were all gone by yesterday evening. It got so quiet. I miss them already. Robin will be back
Wednesday, but I don't think any of the boys are coming.
--His breathing has been better since Thursday. He's been using the inhaler every 4 hours except at night
when he's sleeping. He's still got a bit of a cough, but hopefully that will improve. I think it was all triggered by
the allergens in the air. Me and Robin both have been fighting with stuffy noses and itchy eyes.
--He had labs this morning, but I just checked and not all the results are back. The CBC was about the only
thing. The one I am interested in is the Prograf level. It usually takes a little longer for that one to come back.
--He's been handling the 4 hours off really well. Hopefully he won't get dry this time and won't need any extra
fluid.
--I think that's all for now. He has speech tomorrow and physical therapy and a scope on Wednesday. Clinic
will be Thursday. So as you can see, a busy week is ahead. We have to walk over later to the hospital to pick
up a couple of refills of his meds. Love you all! Take care.-- Laurie
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May 22nd, 2008 11:45pm
Life's good here at the Ronald McDonald. We've had a busy week. Things are looking good for getting to
come home soon. The scope looked good yesterday so we went down on the steroid again. Labs from today
were good. His breathing is so much better now and Dr. Sam said he didn't think he needed to use the inhaler
anymore. Oh, the viral test they did last week said he had a form of the flu. He was really impressed at how
well he got over it. The flu was what was causing all his congestion and wheezing and stuff. He is back to
normal today except for a little cough.
squash and sweet potatoes and he didn't act like he wanted anything to do with either. Everytime she would
get close to his mouth he would squinch up his face and turn his head. It was funny to watch. Sh also does a
few sign language things when she's talking to him. I'm trying to watch close so I can do it too. I've learned
"more", "music"and "on".(I was giving him a bath today and I had Robin look up 'water' on the internet so I
could use that one when we're doing bathtime. I think I'll start studying some more signs. She does more than
try the food. She reads books and plays with toys with him. She sings to him. I guess there's a lot involved in
speech. They've told me that eating and the muscles involved play a part in our speaking.
--We had clinic today and got some encouraging news. He said they had been talking about when they
thought we could go home. He said he is still on a pretty good dose of steroid and he wants him here while
they lower it, but maybe in the next 2-4 weeks. YEA!! He said they will be taking him off the fluconazole(an
antifungal) in 2 weeks. He said when they take him off, they have to watch his Tacro/Prograf level really close
for a week or so because the Prograf level tends to go up when they are taken off the antifungal. So that will
be 3 weeks from now. That will get us home before his birthday! YEA!! Finally some idea of when we can go
home. This all depends on how well he does between now and then. I need to start planning that big
WELCOME HOME/BITHDAY PARTY!
--I tried some chicken and gravy baby food with him today and he seemed ok with it. He didn't squinch up his
face at it and he didn't gag. I guess that's a plus. BUT he made a HUGE mess! He had it everywhere. I like to
see that.
--ALSO I gave him his first haircut today. I had to. The poor little thig had a really bad comb over and it was
hanging down past his eyes. I couldn't stand it any longer. Robin OK'd it. Now he still has a comb over, but it's
just shorter. He looks like a little man. I'll get a pic posted soon.
__Talk to ya later. Love ya! --Laurie
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May 23rd, 2008 11:20pm
I just wanted to update real quick before I went to bed. I been working on his site this evening. I have found a
new guestbook to start using. I don't know if it will be better or worse than the one I am using now, but it's
worth a try. Just click the new link at the top and try it out. I really need your input, so let me know.
--Levi had physical therapy today. He did excellent. She made goals for him last week. This week she said
he's already meeting those goals and she's gonna have to make new ones. She said that's a good thing. He's
now bearing weight on his legs. It's amazing. He's just started doing this over the past week or so. I think he is
just feeling stronger and wanting to get around. He is also starting to enjoy time on his tummy which didn't
used to be something he liked at all. He sits really well and can lean and he balances his self really well. She
said just keep working on his arm and chest muscles when he is on his belly. She said, try to get him to raise
his chest and head up when he's on his belly. He wiggles all over the bed, but I'm still not comfortable letting
him play in the floor yet (maybe if it was carpet), but he's still a little wobbly when he's sitting and goes to
reach for things. In fact today when I was taking his picture he fell and bumped his head. AND this evening he
slid over the edge of the bed and hit his head on the hard floor. He has a big pump-knot on the top, but he
seems ok. I was sitting right next to him. I felt terrible, but it happens. I had 3 wiggle worms before him. He just
worries me more, I guess.
--I hope you like the new pics of his new haircut. Love you all, nitey nite, Laurie
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May 26th, 2008 10:05am
Good morning. Everything is going really good. The weekend was uneventful. Levi is doing so good. He is
acting like a usual baby. Seems like over the past couple of weeks he's making some really big strides in his
progress toward crawling. He's doing really good on his belly, in fact, he can go from sitting to on his belly with
no problem. He is even doing what the physical therapist wanted him to do. He is getting up on his hands and
knees, getting his chest off the ground. I don't think it will be much longer before he figures out how to move
those chubby little legs and go. You can just see the determination in him. He wants to do it so bad. His legs
are getting stronger and stronger every day. He can hold his weight standing as long as I am holding him
balanced. He's becoming a normal kid.(You know what I mean) I can't explain how that makes me feel. I am
just beside myself. He's finally getting to a point where he wants to do these things and feels like doing these
things. It's just amazing is all I can say.
--Something else that is awesome is that he's been taking sips from a sippy cup. Well, I shouldn't say sips, I
should say drops, but hey, it's a start. He's been having speech and she said to try water in a sippy cup. He
absolutely loves it. He's only getting a few drops, but he gets so excited when I say "drink" or "water". I've been
signing when I say them too. He gets so excited and starts shaking his hands and feet. I love it. He's not so
enthusiastic about the baby food, but we're getting there. I gave him chicken the other day and carrots the
next. He wasn't jumping out of his seat, but he got a few tastes and didn't throw up. He smacks his mouth
when he gets a taste. We got a lot of work ahead, but he's doing good.
--Speaking of doing good. Robin's dad is also doing good. He finally made it back to Somerset. He's still in the
hospital, but on the rehab floor. It's so much nicer having him closer to home. Robin went to see him over the
weekend and I called while he ws there. Me and Robin hung up, but Robin's dad made Robin call me back
because he wanted to talk to me. He told me to give Levi a kiss for me(Robin had to tell me what he said), but
he also said "I love you" and I understood that. It brought tears to my eyes. It was so good to hear him talk. He
is doing really well. He still has a lot of therapy to go through as does Levi, but his determination will get him
through. They both will pull through because they are both fighters. I can't wait for him and Levi to get home.
Both of them have been through so much. They are proof that God listens to prayers if ever there was proof
to be found. So thank you all from the bottom of my heart.
--Levi had labs this morning, but I haven't looked at the results yet. They probably won't be back until later this
afternoon. He has his scope tomorrow at 12 and is supposed to have speech later in the afternoon. Physical
therapy is Wednesday and clinic and Occupational therapy is Thursday. So another busy week.
--The boys are here now. Robin drove them up last night. They are only here for the day because Brandon
has school tomorrow. He just has 2 days left. He is gonna come stay with me probably this weekend. He
should be a good little helper if he don't get too bored.
--Until later. Be sure to sign the new guestbook. If you don't think I have your email, leave it with the message.
I am working on a notification list so I can send and email when I update. I am sure you all would appreciate
that. Take care and I love you all.--Laurie
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May 28th, 2008 4pm
Hey guys! Just a quick update today. His scope was yesterday. Today they called and said that no sign of
rejection so we are going down on the steroid again. Although, they did see signs of enterocolits which is
inflamation of the bowel. They said it might be from a virus. Also this morning and yesterday I noticed him
breathing fast again. I called the office and they said to use the inhaler. I gave him a couple of puffs this
morning and he seems alot better. The office just called a few minutes ago and asked how the inhaler helped
and I said he seems better. So they said to use it 4 times a day.
--He had physical therapy this morning. He, yet again, met several of the goals she set for him last week. She
hasn't really been doing anything with him. She said she didn't want to intervene if he was making good
progress on his own. So basically all she does is watch and see what all he is able to do and recommends to
me things to be aware of and work on. And she also sets new goals to replace the ones he's met. He is able to
get on his hands and knees by himself now! It won't be long before he takes off. One of his next goals is
crawling and standing while holding on to furniture.
--Yesterday he had speech. She was also impressed. He's making the "B" sound now. He just started
yesterday morning going, "buh, buh, buh,". I was in the bathroom and had to peek around the corner at him to
make sure I heard right. He jabbered the whole time she was here and ate some chicken. He did really good.
Today he nibbled on a Townhouse cracker.I don't know if I mentioned it, but he LOVES water. He don't get
more than a few drops down, but he loves putting it in his mouth. I am so proud of him. He's doing so great in
everything!!
--We are supposed to have labs in the morning at 8:30 and occupational therapy is coming at 9:30. We also
have clinic at 1:30pm. I'm hoping that he's put on enough weight that we can increase his window off of the
feeds.
--Take care.Love ya! Thanks to everyone that's signed the guestbook. I appreciate it. I think I like this one
better. Later--Laurie
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May 30th, 2008 1:30pm
Levi is 12 weeks post-transplant today! He will be 11 months old on Sunday!!
--I have a secret. It's kind of a spur of the moment thing. Robin's driving up tonight with the boys and tomorrow
morning he's driving us back home!!! YEA! It's just for one night. The secret is I didn't tell the docs, but I'm
sure they'd be ok with it if they knew. He doesn't ever have anything going on during the weekend so it's not
like they'll miss him being gone. He's doing really good, so I know he'll be fine. It will be so good to get home
and see everybody. I don't plan on doing much visitting. I just wanna spend the time with the family and enjoy
the weekend. Maybe we can even have a cookout. Also Robin's dad is supposed to come home today!!! He is
doing really good. The docs said he is ready to come home. I can't wait to see him. It will be the first time we
have been together as a family since before Christmas. Either Levi or Robin's dad have been in and out of
the hospital since then. CAN'T WAIT!
--Levi had clinic yesterday. It went well. We now have a 6 hour window off feeds. I been working with him
eating baby food. He's diggin' the chicken pretty good. He still isn't getting much, but I think he's improving
since we started. AND he's loving the water!
--We are continuing the inhaler 4 times a day. He said it was probably asthmatic bronchitis (but everyone calls
that reactive airway disease). He sounds better, but is still breathing hard and fast. He also said the
enterocolitis (inflammation of the bowel) that showed on the biopsy looked like a virus, but all the viral tests
came back negative. The good thing is that there was no rejection. Nothing was said about going home
sooner. Just that he wants his Prograf level to be stable for a while after they take him off the fluconazole
(which will be next week) and they also want him to be almost off the steroid. So hopefully another few weeks
will be all.
---Do you like Levi's transformation over the last year? Amazing huh? What a fighter!!! He is the light in my
life....well, one of 4. Just looking at all he's been through and seeing that beautiful smile, helps me understand
how prayer works. God is truly great and Levi is definitely proof. I hope you can all take a piece of this and
gain that knowledge as well. Through heartache and tragedy, God is there. He may not give you what you
pray for, but he answers prayers. What I mean is, when we thought Levi was going to die, we prayed for him to
be all better, just to be able to keep him just a little longer, we prayed for a miracle. Our journey may not be
exactly what we had in mind, we have gotten more than we could've ever asked for. Not only have we gotten
to keep him here with us, but we've gained friends and a deep appreciation for life and what's important in it.
So when you see us, don't feel sorry for us, don't have pity for us. If anything you should be jealous of what
has come out of this whole situation. I wish you could feel the peace and happiness I feel right now. The world
would be a better place if everyone took a minute to realize that God is always there, you just have to believe
in Him.
--Everyone take care. Love you all.--Laurie
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