Yeaaa!!!  I'm back home and seem to be doing well.  I have my nurse friend, Pam, back with me during the day.  And guess what?!?  I have another new nurse friend who is going to help Mommy with me in the evenings.  Her name is Miranda and she is really, really nice too.  Wow!  I can't believe how I am so blessed to have all these friends helping me.  Ooo, ooo, and guess what I am doing now??  I am sleeping like a big girl in my own crib - all by myself!   Before my surgery, Mommy & Daddy kept me close in the bassinette so they could keep their eyes and ears on me.  But now they don't have to, and we're all real happy about that . . . especially Mommy & Daddy . . . I wonder why . . . hmmm.  I also don't seem to be having problems with my feedings right now either.  I'm going back to Johns Hopkins on Thursday afternoon for an 8:00am appointment on Friday morning to do bloodwork and exam.  I've got to do this once a week for the next month until they feel I'm okay without it.  I'm sure everything is going to be okay.  After all, I have all of you praying for me, right?  Thank you so much for that.  Well, I'll let you know how my trip and doctor visit went when I get back.  Till then, know that I love you too and cherish your love and prayers.

Maggie   

Hi Everybody!

Mommy, Daddy, Grammy and I are very, very glad to be back home with you all.  We got back around 12:30am Saturday (1/10/09) morning.  I had slept all the way home, so I was wide awake to play with my toys and animal friends when I saw them again! For some reason, Mommy& Daddy weren't, and they kept yawning.  Finally at 2:00am, I fell asleep and we all went to our nice, warm, comfy beds.  That was great, but . . . when I woke up later and for the rest of the day, I had diarhhea.  Mommy got worried, so she called my doctor friends at Johns Hopkins.  They told me to go to CHKD emergency room.  After spending about 5 or 6 hours there, they decided to admit me at 2:00am Sunday morning.  Poor Mommy & Daddy - they were soooo tired.  Daddy has always had the "night shift", so he stayed with me while Mommy went home to get some rest.  She understands the funny words the doctors use about me better than Daddy, so she always is with me during the day so she can talk to them.  Well, I'm not sure how long I will be here, but I think it will be short.  I sure hope so!  So as soon as I get back home again, I'll let you know.  Meanwhile, would you please keep praying for us, especially Mommy and Daddy.  They seem so tired and worn out.  My family is worried about them too.  I love you all and thank you for all you do for us.  God bless each and every one of you.

Love,

Maggie 

Yipee!  Hurray!  Whoopee!  Elmo and I are coming home today!!!   We thought we would NEVER get back to home, and my toys, and my stuffed animal playmates, and my family and friends.  WOW!  And Mommy, Daddy, and Grammy are sooooo happy to be coming home too!  It has been 6 whole, long weeks!!!  We've missed everybody very, very much.  I finally got my staples out and I'm able to move around much better now.  They don't hurt anymore.  I was even sleeping on my tummy for the first time ever!  But now my tummy isn't doing so well and I will need your continued prayers.  Because I was so dehydrated and on IVs for so long, it has really, really shrunk.  So it's not absorbing what they are giving me now in my feeding tube and I'm not getting the nutrition that I should.  They are giving me much, much more to "eat" now, trying to force my tummy to stretch out again.  I really don't like it because what it has done is made my whole tummy area swell up like a "Budday belly"!  It really hurts and I can't sleep on my tummy anymore. The doctors say it will come back down slowly over time, but it's what they have to do to keep me from being malnourished.  Oh my gosh!  I just thought . . . I sure hope it happens by summertime before I get back into my bathing suit.  Daddy says I'm quite the bathing beauty, ya know.   I wouldn't want to disappoint him!

My family and I would also like me to take this time now to tell you something very special and important.  We are very, very blessed that I am still able to be with you all, and we give God all the praise and glory for the absolutely wonderful miracle He has given me.  We thank all of you for your prayers, your love, your genuine concern and caring, and your financial offerings that have made it all possible.  Only God can thank you enough for me for all you've done - and some of it I probably will never know about.  I ask Him with all my heart to return your blessings for me back into your lives a hundredfold.  May you be greatly and richly rewarded for your love to me and to my family.

Much love and much gratefulness to you all,

Your Maggie

Hi everyone - this is Maggie's Mom, Joi. Sorry there hasn't been an entry in the journal for such a long time. With the holidays and such Aunt Peggy and Maggie have not been able to have their "special talks" so Peggy can update the journal :-) Maggie got out of the PICU the Tuesday before Christmas. She has been in the step down unit ever since. On Christmas eve Maggie got dehydrated again, but they caught it quickly and she was doing better by the day after Christmas. The doctors have decided that Maggie was getting dehydrated because the formula they were giving her was not digesting well. They slowly started her on a new formula right after Christmas and it seems to be going well. They say it will take a long time for her tummy and intestines to handle nutrition. There was some damage done to her tummy and intestines before the transplant since her liver wasn't working right. Right now her liver is doing great! They took the staples out last Monday. She has been playing some, reading lots of books, watching Elmo and playing with her new Elmo Live that her Aunt Dee Dee sent her. We had Aunt Brittany, Uncle Paul and cousin William visit the day after Christmas - that was fun. It is so nice to have people come and visit - it helps break up the monotony. The doctors are saying maybe we can go home sometime this coming week - only time will tell. Please keep praying for us an d we love the guest book entries so keep them coming!

Hi Everyone!

I'm baaaccckkk!  Sorry I haven't written, but my aunt, who is helping me write to you, has been real sick the last 3 weeks.  But, like me, she's better now and we'll be letting you know what's happening.  I'm so glad to "see" you again!

Love,

Maggie

Dear Faithful Ones,

Well, I didn't do too good in my isolation room on the 6th floor and they're taking me back to PICU.   On Friday, they were so pleased with my numbers that they said I could come home on Wednesday.  I was soooo excited!  So on Saturday they took me off my pain medication and I reaalllyyy didn't do well.  I was in pain all day long and could NOT get comfortable.  Poor Daddy - he tried so hard to make me happy.  Even Elmo could not help me!  Daddy said he was going to contact everyone until he got someone to give me something - and they did.  It was agreed by the pain management team that I need to be weaned from it.  Then I got very dehydrated and they couldn't figure out why.  I was so thirsty and just couldn't get enough to drink.  Then I started throwing up.  Well, guess what??  We ALL have the flu.  Grammy got so sick at the Ronald McDonald house last night that they rushed her in an ambulance to Mercy Hospital.  Then Mommy got sick, then Daddy, and now me.  It's been a bad two days.  So because of the flu, they have put Elmo and me back in PICU until I can get well again, come off my pain medication and be well enough for Mommy and Daddy to take me home on their own.  I think I'm supposed to have my staples taken out of my tummy area on Wednesday.  I guess by then they'll know what to do with me.  So, if you all would be praying hard for me and my family to get well VERY SOON, I sure would appreciate it.  I'm sure you have been very faithful to pray for me every day, and I thank you so much for that.  Maybe you could add a few more for everyone else too.  God bless you for that and for taking care of me in this very special way.  I'll write again when I get better to let you know what they are going to do next.  Till then, picture me blowing you a kiss.

Love,

Maggie

Guess what?! Guess What?!!!  They took me out of PICU and rolled me down to the 6th floor (Room 623).  It was so much fun going for a ride through the hospital!  "The Magster" is rollin' now!  Next move will be out of the hospital!  They've put me in an isolation room so I won't have any roommates and to make sure I don't catch anything while I'm here.  Mommy bought me an Elmo balloon for my new room and I REALLY love Elmo. 

The only bad thing right now is I'm still itching from my pain medicine.  They took me off the IV drip and are giving me most of my medicine through my feeding tube.  They are also giving me more "food" through my tube because they want to force my body to push the bile that's left in it out.  So now I only have a drainage tube at my incision site (to make sure there's no bleeding), an IV in my foot and one in my arm (for my anitbiotics).  It makes me uncomfortable and hard for Mommy to hold me, but I just know it won't be long before they take all of them out too.  I heard the doctors say they are tickled to death with my "numbers".  (Hmmm.  Could that be my girlish figure of 12-12-12?)  

So now I'm just sleeping and watching Elmo on his DVDs.  "Life is good again!", as Mommy put it.  Tomorrow, my good friend Tamara Dietrich from the Daily Press is coming to see me and take pictures.  I really like her - she is soooo nice and has helped Mommy & Daddy with many things.

There's one more thing that's important.  One of the other children in PICU was a little 15 month old boy had suffered a brain injury.  When we were leaving, we found out that they were taking him off of his life support and his family was having to say good-bye to him.  It was really, really hard for them.  I don't know his name, but God does.  Would you all please be praying for his family?  I know how much prayer helps - because of how yours have helped me - and I think they could really use them.  Thanks for being so loving and giving - to everyone.

Love,

The Magster   

YEA!!!! They took the "fem line" that was in my leg out today (Monday) and moved it.  Now Mommy, Daddy and Grammy can hold me!  I am sooooo happy to have them hold me again!  I missed them very, very much.  I seem to be doing better too.  My Bilirubin count is down to 1.8 (normal is .3 - .6).  It was 23.5 when I came into the hospital before the transplant.  My pneumonia also seems to be getting better and they're hoping to stop the Albuterol treatments soon.  I hope so because I hate that mask on my face.  I put up with it - but I don't like it.   It seems I've stopped the bleeding inside too because (ahem) my diapers are showing that.  They can also tell by my diapers that my new liver is doing a great job getting rid of the bile out of my body.  The only problem, and I hate to complain, is that I itch, itch, itch.  It's because of one of the medicines I'm taking - something called a "side effect".  I seem to be scratching my face in my sleep, so they're going to put mittens on me when I do.  But the good thing about it is everybody plays with me to keep my mind off of it. Mommy plays "Peek -a-Boo" with me, which I just love!  And Daddy says and does funny things that makes me laugh and kick my legs.  They are my fun-est playmates.  But my best friend right now is the Elmo that Grammy bought me.  I keep him in my arms hugging him close all the time.  He makes me feel better, especially when Mommy and Daddy aren't there.  And, oh yeah!  They moved me to another room - in the the PICU Annex.  There are so many sick children where I was that they were afraid I would catch something they had - and we sure don't want that!!!   Now I have a private room, which is nice.  They are hoping I will be able to move to the "step-down" unit on Wednesday or Thursday.  When I do, my sweet friend, Tamara Dietrich, will come to visit me.  Remember her?  She wrote that really nice article in the Daily Press about me.  In fact she wrote another one yesterday (Sunday) which made me feel so special.  I've got a feeling, like Elmo, she will be a wonderful friend for a long time.  I hope so!

Well, that's all I have to tell today.  I'll try to write you again soon.  Till then, I ask that God bless and keep you and thank you for your prayers.

Love,

Maggie 

Hi Everybody!

Whew!  We had a little scare on Saturday and Sunday.  I was vomitting blood and they didn't know why.  The doctors did an Endoscopy on me and found out it was because I had developed gastritis.  You see, the feeding tube they put down to my tummy was bigger and harder than the one I used to have.  They had to do that because they needed it that big to do other tests through it.  But it irritated my esophagus and tummy linings and caused them to bleed.  Because my platelet count is so low, I bleed easily and it's hard to stop (my blood doesn't clot quickly).  So they've now given me the same size tube I had before.  I'm also getting special medicine to heal the irritated linings and to coat my tummy so I don't get an ulcer.  The doctors who did my Endoscopy told my mommy how beautiful I was and that they can't believe how mature I am for my age.   While they were suctioning the blood out of my mouth, I just laid there watching Elmo on my DVD.  (I mean it's THE Elmo, for heaven's sake!  I just love my Elmo!!!)  They also said how brave and calm I was for being so small.  One nurse told my Grammy that our family is just unbelievable in how we're all dealing with this.  Another nurse asked my Mommy, "How do you do it!?"  Mommy told her that 2 days after I was born she found out about all my problems.  She determined then that my journey is in God's hands and at the end of the day, His will will be done.  Shes' turned my life over to Him.  Isn't she the greatest Mommy in the world?!?!?!?!  What more could I ask of my parents than that?

Well, thank you again for all your prayers.  It's been real hard for me, but I just know I'm going to be well one day.  And it's all because you care and pray for me.  I love you all very much, even though I don't know a lot of you.  But we all have the same Father and He knows what you've done for me.  I'll just ask Him to thank you for me.  That would be the best way there is!!

Love,
Maggie