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Give a gift in honor of this child.
Gracie S.
 
Article on Gracie titled "Mary's Baby"
 
 
These are pictures taken during our visit with Gracie before her surgery on 8/31/05.
UPDATE: 10-8-06
Gracie was taken to our local Children's hospital about 2:30 this morning, in which they admitted her...did labs, etc. Then at about 7:15 this morning they left with her to transport her down to Vanderbilt Children's. Don't know really what's going on aside from being dehydrated. She was a rag doll, very floppy, very pale,lethargic like and she was pooping a gray tinted poop which can be a sign of rejection, also there was blood in her stool, she was throwing up almost continuously, it later started to look like bowel. Her labs showed good liver numbers which is good, she has no fever which is good, so hopefully she has just caught a bug, and will have a short hospital stay. She's not smiling, so when Gracie's not smiling, she's definitely a sick little girl, cause all who know her know what a smiling little girl she is. Paul is with Gracie in Nashville now, I came home to try to get some sleep (was not very successful) then here shortly I will head to Nashville, then Paul will return home. Please pray in agreement with me that this is nothing and she'll be discharged soon and she'll be smiling again soon, and back to her new skill...crawling.
UPDATE: 10-6-06
I'm so very excited to announce that Gracie crawled last night! It was very slow...one arm, one leg, then the other arm, and other leg...so it was slow but she was doing it! We were celebrating pretty heavily in which Gracie loved. She's also getting herself from lying to sitting quite well. She's also doing very well with not throwing up and diarrhea being much better. She hasn't thrown up in several days! She can be very irritable at times though but I'm sure that's due to being on the steroid. She will see the Dr. again next week.
UPDATE: 9-26-06
The event in Nashville went really well. We got pictures taken with Naomi Judd, and was interviewed on video. Paul's speech went really well, he's such a pro at it!
So we got results back on Gracie's tests seems she has eosinophilic, esophagitis, & colitis. I wont even begin to try to explain it as I don't fully understand myself, so just run a check of it online cause it can explain it much better than I. The Dr. said in some individuals post transplant this is a result of being on the anti rejection medications. We will start out putting her back on the steroids for two weeks, then we'll see the Dr. in two weeks then two weeks after that she will scope Gracie again, then she will possibly have to alter her diet as well. Please pray these things help Gracie and we have a stop to ALL these problems she's having which is the throwing up, diarrhea, reflux, having blood in her stool, delayed emptying of the stomach, & anemia. All of these are symptoms of the diagnoses! This poor babe needs these things resolved so please pray for her little body. Thanks to every single one of you who continue to remember our precious little girl in your prayers. God bless to you all.
UPDATE: 9-21-06
Gracie will be having a photo shoot in the morning with the TN men's basketball coach! How exciting! She'll be decked out in TN of course! I'll be sure to post the pictures! This is all to bring awareness to organ donation! So if your not currently an organ donor I encourage you to become one! God bless to you!
UPDATE: 9-19-06
Gracie and I are still at Vanderbilt, but hope to be discharged once the Dr. comes in later this morning. Yesterday they took some biopsies, but the biopsy take a week to come back. They saw some white spots in her esophagus which the Dr. said could mean one of three things, one could be an allergy, could be from the reflux and one other possibility. Although Gracie threw up yesterday it was no where near as bad as usual. This morning twelve hours after last being fed she threw up her formula which of course should have emptied her stomach last night! She is still on the ph probe monitor, which they plan to remove sometime this morning. Please continue to lift her up in prayer.
UPDATE: 9-18-06
Just a quick e-mail to remind everyone to remember Gracie in prayer as she will be admitted to Vanderbilt and have those tests run. The plan is that she will be discharged on Tues after the tests are complete
UPDATE: 9-9-06
Gracie continues to throw up and have diarrhea daily. Her tests are still scheduled for Sept. 18th. I'm anxious for the results...hope they find the culprit and it's an easy solution. So please be much in prayer for this, I also ask for prayers for myself as I have been getting very stressed at times over it all, with the everyday cleaning Gracie up, laundry from the throwing up, etc. etc.
We have also been asked by the TN donor services to speak at an event in Oct. and to possibly have pictures taken with a TN Vols basketball player to bring awareness to it!
UPDATE: 9-3-06
Gracie was hospitalized at Vanderbilt on Friday night due to increased throwing up and increased diarrhea and blood in her stool, she was discharged late Saturday, but had two throw ups just on the way home. Several tests are scheduled for Sept. 18th, but those may be bumped up due to this increase. Please be much in prayer for her that the throwing up gets resolved...quickly.
UPDATE: 8-24-06
Gracie's appts went well today at Vanderbilt. Her anti-rejection drug level that was low and they increased it...now is high...hard to get it just right...lots of adjusting. The gastric emptying test was lengthy, but she tolerated it really well, despite being restrained the entire time. She even took a nap during the nap after about an hour and a half. We wont know the results of that for a couple days. The Dr. has set her up to have a few tests done next month, since she's still throwing up and also since she has always had diarrhea since infancy.
UPDATE: 8-19-06
We were asked from the liver foundation of America for Gracie to be a featured child who has received a liver transplant at one of their big fundraiser in Nashville, we accepted. There will be one child (Gracie) and one adult that will speak at the event, have articles run in the paper, in newsletters and possibly be on tv.
Gracie continues to throw up. It has been pretty much once a day, and either the afternoon or evening feeding. I hope this resolves, because her esophagus could get damaged from so much throwing up. Just pray for this, and for her feeding orally. She still is not crawling or pulling up or anything like that. She's getting very heavy (27 pounds) so I hope she begins to walk soon.
UPDATE: 8-12-06
 Gracie started her first day back at Children's Corner (the therapy center) yesterday, she was so excited playing in the playroom with the other children. She loves kids.
We met with the Dr. over the therapy who gave us the results of the MRI. It was abnormal, although two parts of the brain were normal. She wants to do another MRI in 6-12 months to compare the two to see if there will be an improvement. Please pray that Gracie's little brain improves...this is possible through God...pray!
UPDATE: 8-10-06
Gracie went in early Monday morning for the MRI, we do not know the results of that yet. Tuesday her eyes began to sweat, so I called her Dr. in Nashville who said go ahead and bring her down this evening, but while I was packing Gracie began acting really drunk like, and within minutes she was totally unresponsive, yelling at her or nothing helped, pulling her eyelids open didn't help, I checked for a pulse, and thank God she had one. I immediately dialed 911. Within minutes later Gracie began to come around but she was acting really drunk, and not the normal Gracie, she had poor head control she didn't look good, it was a big scare. The ambulance came and took us to Children's in Knoxville, they did tests (urine and blood), everything checked okay, they gave her a shot of antibiotic sent her home, but we were to go to Nashville the next day (Wednesday), once there they did blood work, which showed her liver enzymes elevated, her anti-rejection drug in her bloodstream was low, and she's anemic. They are not sure what happened to Gracie when she went unconscious but one of the four doctors she saw said sometimes in kids when they are sedated it could be a day or two later, something builds up then is released and it's like they are sedated again. Today Gracie is doing well, she's in good spirits, she has no fever and she's taking her morning nap now. Pray all continues to go well, and no more scary episodes like the other day.
UPDATE: 8-3-06
The doctor's don't seem to be too concerned about rash...I am though as it has yet to go completely away, although sometimes it's better than other times. She's began scratching, so I think it may itch. I believe I'll make her an appt. tomorrow with her pediatrician. We have began to switch her over to a new milk, which is new on the market...hoping it will help with the throwing up.
UPDATE: 7-31-06
Gracie got to come home today, however she still has some bumps and her stool culture showed up positive for blood. I'll be calling the Dr. in Phili and in Nashville tomorrow to see what they have to say. She continues to throw up, Vanderbilt will be doing another stomach emptying test next month, they also wont to change her from pediasure to another formula. Gracie will be having an MRI done at our local Children's hospital on Aug. 7th...pray for that procedure as she must be put to sleep for it.
UPDATE: 7-29-06
Gracie is back in the hospital, at our local Children's hosp. Two days ago she broke out in a rash on her face, I called Philadelphia which said to take her to the ER, they called ahead to let them know we were on our way, by the time I got her there the rash had spread to her legs and arms, and had started running a fever, they got us in right away, although the waiting room was packed. They still haven't figured anything out, except maybe it's just a virus, they have her on I.V. antibiotics, waiting on labs to grow...hopefully this will be a short hospital stay.
UPDATE: 7-11-06
Gracie had her appt. in Philadelphia on Friday for the feeding evaluation, they really didn't tell us anything we didn't already know, they did however make a couple suggestions. Her appt. on Monday was very pleasant they told us she could stop three of her medications! So we danced and shouted glory to that! She also will be able to transition out of home therapy next month! God's good!
UPDATE: 6-29-06
Gracie has been put on a new reflux medication, she's been on it now for about three days, she has had no throwing up in those days, however she has spitup a few times. We will be heading up to Phili soon, Gracie has appointments there. Pray for our safe trip up and back. I will update on the appts once we're back home.
UPDATE: 6-17-06
Gracie's G-tube (feeding tube) study was done today, everything looked good as far as the placement of it, however reflux was seen at first not bad, but then it went way up her esophagus, pretty badly. The Dr. at Vanderbilt said they could try putting her on a different kind of medication twice a day to see if it helps her with the throwing up. We also talked about having her stomach wrapped which prevents anything from coming back up, which is a big surgery. I told her Gracie would have to be really bad off, before we would agree to that...she agreed, and said that the doctors up in Philly would agree as well.
UPDATE: 6-15-06
Gracie's appts in Nashville yesterday went really well, although we haven't heard the lab results yet. There is concern on one of the labs that should have came down after the Dr. there at Vanderbilt put her on a medication that she was on prior to transplant...that is used for ins. for her kidneys post transplant...that number as of labs before yesterday had not came down, so we're real curious to know that lab result, and also her anti rejection medication level.
Her feeding therapy went really well there too, it had been a while since that therapist had saw her so she was real pleased with the improvements she's made.
UPDATE: 6-12-06
Gracie went to see the surgeon that put her feeding tube in. He said he will not relocate her tube, but has ordered a test to check the placement of the tube, to make sure it is where it is suppose to be.
Gracie's throwing up has for the most part stopped. She will see the Dr. in Nashville next week.
UPDATE: 5-31-06
These are pictures from Gracie's ride this year...
CLICK THE LINK TO VIEW.
UPDATE: 5-29-06
Baby Gracie got to come home today! Amen! She's still doing some throwing up though...pray that resolves itself, fast! She does have that appt. coming up on the 6th with the surgeon that put her feeding tube in...we really feel like the location of it is causing a lot of her throwing up. We really hate for her to go through another surgery...and another scare, but more than likely it will have to be relocated!
UPDATE: 5-28-06
Gracie was admitted to ETCH in Knoxville this afternoon, with I.V. fluids, is showing possible virus, also possibly something about the kidneys, but wont know for sure till all the labs are in. Hopefully she'll just need some fluids then she'll get to come home. She's definitely there for overnight though.
Gracie is still in the hospital. The Dr. here at Children's has been communicating with her Dr. in Nashville. She's had some issues with her labs, which we're confused about. The Dr. here said that she was more dehydrated than the day before, which has to be inaccurate because she was wetting diapers and has been on I.V. fluids all this time. They took more blood this morning to do more labs, hopefully everything will look okay and she can go home today. She does not do hospitals very well, but I can't blame her. Sweet little baby is so over the hospital stuff.
UPDATE: 5-19-06
Gracie and I went down to Nashville on Tues for a Tues afternoon appt. then spent the night for appts on Wed. Everything went well, however there are some adjustments to be made, one of her drugs that has been given every day now can be given every other day, and her anti-rejection drug has to be increased again, they want her to have labs done next week to see if the adjustment will be enough this time. The developmental assessment that was done on her, showed her developmental age to be as mostly between a 5-9 month old level, in one area though she scored as high as 16 months, so her overall developmental age is at about a 9 month old level......praise God for what she IS doing! Gracie has been making some improvements in the eating dept., she is putting food in her mouth, even biting it off, but will not swallow...at least she's now putting food in her mouth. Please continue those prayers...God's answering! Amen!
UPDATE: 5-14-06
Gracie's benefit ride went really well today, it was a success! We want to thank all those who attended, who helped, and those that couldn't attend but were there in thought and prayer. I will post some pictures of the event at a later date.
UPDATE: 5-7-06
Gracie will be going to Children's in Knoxville this week for labs to check her level since they increased her anti-rejection drug to see if it needs to be adjusted even more or if it's okay now.
Paul and a lady from donor services in Knoxville were on WIVK this morning on sound off to talk about organ donation, they talked about it for the whole show which is 1 1/2 hours long! They mentioned the ride we have coming up Sat. (May 13th), which will be at Loudon High School, registration begins at 9AM with the ride starting at 10:30. Donor services will be set up to encourage people to become organ donors. For more info on the ride, call Paul at (865)389-1905.
UPDATE: 5-3-06
God gave us another safe trip to/from PA. They commented on how good Gracie looks...of course she steals their heart by her charming big smile. They have, however had to increase her anti-rejection medication a bit, they also have put her on iron because she's a bit anemic. They are going to have us try something different on her feeding...we will only give her pedialyt at night instead of pediasure and have the pump go off earlier, in hopes this will help with her beginning to eat orally. Also when she's put in her highchair, rather than start the pump right away, we will first attempt oral feeding for 10-15 minutes, then turn the pump on, please pray this will be the trick that triggers her to know, this feeling I'm feeling (hunger) will go away if I eat (with my mouth). Gracie will go back to PA. on July 10th, with Nashville in between. Vanderbilt will be doing a three hour long developmental assessment on her later this month, I wonder what all that will involve, because three hours is a long time!
UPDATE: 4-24-06
Gracie's test yesterday at Vanderbilt went well, but it was lengthy, it took 2 hours and she was strapped down flat the whole time! It was during her nap time so I thought she would fall asleep but she never did. The test showed that her stomach is a bit on the slow side emptying, but not bad, so their not too concerned about that. The appt. this morning went well, but once again, the blood draw was lengthy, and they had to poke her twice. Gracie is such a trooper. The Dr. is putting Gracie back on one of the medications she was on prior to transplant that helped to control her ammonia, at this point though it will be used kinda as insurance for her kidneys, her one lab has been going up so she will check it again in one month to see if it's coming back down by being put back on the medication. Gracie will next be going back to Philadelphia the last day of this month for a May 1st appt.
UPDATE: 4-22-06
Baby Gracie "Benefit Motorcycle Ride" Saturday May 13th with a rain date of June 3rd. Loudon High School Registration starts at 9:00am ride begins at 10:30am $20 per bike. Please NO ALCOHOL! Bar-B-Q Meal plus door prizes $5 per ticket! Contact info...Paul (865)389-1905 or Patrick (865)567-4527 The DONATE LIFE organization will also be involved to help bring awareness to organ donation and also as a fundraiser for them from the proceeds of the t-shirt sales! Directions- Take I-75 to exit #72 (Loudon exit) Take hwy 72 east towards Loudon. Go approximately 2 miles and turn left at the first traffic light. Go another 1/2 mile and Loudon High School will be on your right. CAN'T WAIT TO SEE YOU THERE!
UPDATE: 4-18-06
Gracie is doing really well, and we praise God everyday for it! She continues to progress developmentally...just still working really hard on the eating orally...I know it will come, I'm just getting impatient I guess, I want her to be like other kids her age, but I often have to remind myself, most kids her age have never gone through what she has. She's such a precious child. Although she doesn't talk, her smile says a million words!
Gracie & I will be heading down to Nashville today for a two hour test this afternoon, then for an early morning appt. in the morning with the Dr. we will be spending the night in Nashville tonight.
UPDATE: 4-14-06
Gracie is continuing to do great. I've began weighing her food before and after to see exactly how much she is taking in orally, the speech therapist will be talking with the nutritionist as I will be talking to the Dr. to see if we can scale back some on her pediasure via G-tube (feeding tube) She is averaging around 22 grams per feeding, not really any fluids though, I can manage to get some bites in her, but not sips.
Although Gracie will not be attending Easter Sunday church service, I will still put her in her pretty Easter dress and pretty her up just the same (smile).
A dear friend from church has offered to watch Gracie Easter Sunday so that Paul & I both can attend church together! This is so very kind of her to do, and we are going to take her up on the offer. A part of me feels bad though because she's giving her Easter Sun. up for us.
Gracie has an appt. Tues of next week and also on Wed. at Vanderbilt in Nashville, so she & I will be spending the night down there Tues. night. Her next appt. in Philidelphia will be May 1st.
UPDATE: 4-3-06
Gracie & I made it up to Philadelphia okay...but I must admit I was a nervous wreck, the first plane was small (seated 6 people) but the second one was very tiny (only seated 4 people) When we hit bad turbulance I was really a wreck but Gracie was just smiling this huge smile as if to be laughing at me.
Her appt. this morning went really well, the lab techs here are awesome, so they got the blood without any problems (as they usually do here). The Dr. was pleased with how well Gracie is doing. Gracie has taken to bruising really bad, which they feel is a result of the blood thinner so they have stopped that for 1 week then when we resume it, it will only be three times a day instead of everyday. We will return back here to Philadelphia in exactly one month, with Vanderbilt following in between. Please continue the prayers for our lil miracle girl, cause you know we shouldn't just seek God out in the troubled times, but in the good times as well. We thank God for ALL that he has done...and will do!
Gracie & I will be returning back home tomorrow (Tues the 4th) please pray for our safe return.
UPDATE: 3-25-06
I feel just awful. Gracie's feeding tube got accidentaly pulled out last night! I mean the whole thing! Evidentaly her tube was between me and the crib as I put her in bed and it got pulled right out! I can't believe she didn't cry any more than she did. There is a water filled balloon on the inside of her belly that holds it in place, so that came out through the small hole in her belly! Talk about feeling just awful, awful! I kept telling her I was sorry over and over.
As for a praise...yesterday evening, Gracie ate so very well! Well enough that I stopped her tube feeding short because she had ate enough at that feeding orally not to need the tube feeding! I kept saying over and over, "Gracie say ah" I guess she got tired of hearing me say that so she said, "ah" She has been doing a lot of babbling which she hasn't done any at all in many months. Last night, Paul & Robert said she even said, "daddy" Paul has been working very hard at getting her to say that, he thought he had imagined it, but Robert confirmed what he thought she had said. Needless to say, Paul is on cloud 9 (since she has now said daddy very clearly).
UPDATE: 3-22-06
We got a call from PA today, Gracie's labs look GREAT! Everything is in the normal range but one but it's came down alot! Things look so good that one of her anti rejection drugs can now be stopped! Praise God! The Dr. said there could be a time in the future that it has to be restarted but at this time it's okay to stop! That drug causes diarrhea so it's nice to be able to stop it! Gracie went to the pediatrician today, that visit went really good, he went ahead and did her 18 month well baby visit today since she will be 18 months in only 5 days. She's a little over 27 pounds...around the 85% for weight.
UPDATE: 3-19-06
Gracie's appt. at Vanderbilt was good, they put her on a stronger stomach medication in hopes it would help with her throwing up. Her little bottom is so raw, due to all the diarrhea from the medications, I got some new medicine for that, so hopefully it will help her. We saw a feeding therapist while in Nashville, it was a VERY beneficial visit, we will be seeing this therapist again when we go back to see the Dr. there. Gracie is so happy to be home, playing and being with her brothers and sister.
UPDATE: 3-14-06
Gracie is home!!! She slept really well last night, goes to show this baby loves being at home, in her own bed! She will be on an oral antibiotic for three times a day for five days, it is a fairly new drug, it was real expensive and insurance did not pay for it...not sure why, but the doctor said there was no choice when it came to Gracie it was the only one she could have. She will have her appt. in Nashville tomorrow, pray for our safety while traveling to/from there.
UPDATE: 3-12-06
Gracie has now tested positive for CMV, prior to her transplant she tested negative but the liver she received tested positive, so I'm assuming this has been the whole culprit for this weeks problems with Gracie, of course we haven't spoke with the doctors on the subject yet, the nurse just brought in the news on that. Her I.V also has came out, which means they have to put another one in, I hope they get one in without any problems, as she'll be awake this time.
UPDATE: 3-10-06
Gracie had a catheter put in to do a urine test last night along with another throat culture, they took the port out close to noon today, that went well and a lot quicker than anticipated. At this point they are now saying they will continue I. V. antibiotics for a couple more days, in which she'll still be in the hospital then she will be able to go home on oral antibiotics for a week, so potentially get to go home on Sun. Since Gracie's port is now gone, she'll have to get poked a lot. They did place an I. V. in the OR while she was still asleep, they must have had a hard time getting one in though as I saw three other places they attempted to place it, they ended putting it in her little foot.
UPDATE: 3-9-06
Julie called this morning. I was on the road so I am just now getting this out.
Gracie had a fever this morning and has been throwing up. They are removing her port to elimiate it as a source of infection. Her blood counts are low and she will be receiving a transfusion today. Please continue to keep her in your prayers. She gets upset when a nurse even enters the room as if to say, no don't hurt me. Pray for mommy and daddy to as they care for her. Please God, we ask you to heal her in Jesus name…Amen.
UPDATE: 3-8-06
Currently:
We have a praise report!...Gracie's port is NOT infected, her numbers are beginning to come back down, but since her immune system is so low they will be treating her for 14 more days with I.V. antibiotics, so she'll definitely be in the hospital a couple more days then they will let us go home with her and just have home health come out, until we feel comfortable doing everything ourselves. She has been put back on pediasure and she's tolerating that well, and she has not had a fever today! The doctors in Philly have said once she comes off the I.V antibiotic if this were to happen again, then they will definatly want the port to be taken out.
Earlier:
Gracie has been very unhappy in the hospital, as a matter of fact she started fussing as soon as they put us in a room in the ER, poor baby she's so tired of being in the hospital. Okay so, what we know so far is that some of her labs have to "grow" which means we wont know about them until sometime tomorrow. Late last night the one result came back showing an infection in her port, so today they retook the labs in her port and also took some from her arm, to make sure that she does in fact have an infection there, if she does then the port would need to come out right away then continue with I.V. antibiotics for a week, which would also mean being in the hospital during that time. Her liver enzymes were elevated yesterday, and had gone up even more today, but as the people in Philly have said...any normal person that's sick will also have elevated liver enzymes. The Physicians asst. said once we know more will determine if they can continue to treat her or if she'll have to return to PA. Her blood level is getting low so there's the chance of needing a transfusion, but hopefully they will go back up, like how they did in PA.She didn't sleep well at all last night, and threw up quite a few times, and having diarrhea, they have also tested her for roto virus...don't know the result yet. I am extremely exhausted as I only got about 30 minutes sleep. Paul & I had a change of "duties" this evening, my parents came to the hospital to sit with Gracie then I came home, once I got here Paul left, at about 7:10, to be sure to be there by 8 for her meds...it's very important we make sure she gets all the meds she needs. Needless to say she wont be going to her first follow up appt. in Nashville tomorrow.
UPDATE: 3-6-06
Dear Friends,
Gracie is on her way to Children's Hospital. She has a fever and as this is
a possible sign of rejection they will admit her and treat her as though she
were rejecting her liver until they know the source of the fever. Please
pray this is nothing serious and I will update as soon as I know more.
God Bless,
Elizabeth
UPDATE: 3-5-06
Day after surgery...........................................................Equipment used after transplant.
 
UPDATE: 3-4-06
Things continue to be great! Gracie slept really well again last night, which in turn means mom & dad did as well (smile). I'd like to ask that everyone pray hard on Gracie's appetite, and beginning to eat orally...if she can begin to do that and eventually very well, then her G-tube (feeding tube) can be removed. Although we already have the okay to have her port removed, we want her to recover from her surgery before putting her through that.
My mom is coming down shortly to watch Gracie so we can take the boys out to see a movie. I'm so very thankful to have my mother help out as she does, not just anyone can watch Gracie, since she has the special needs.
UPDATE: 3-3-06
We got home around 11 PM. last night, Gracie traveled quite well. She was SO happy to be home, when I walked in her room she just looked around and smiled as if to say, all right I'm back home! She slept SO good too, she didn't fuss at all when I put her in her crib and she didn't make a sound all night long as a matter fact she was still sleeping at 8:30 this morning, but I decided to go on in and wake her up so I could give her medicine to her, turned out she was already awake but just lying there looking around.
The radio thon went well, we actually didn't go on air till like 11:30 or so, Gracie kept grabbing the microphone and trying to "talk."
UPDATE: 3-1-06
Gracie's labs from Mon. look great! One is all the way down where it needs to be and the other number came down by half! Things are definitely going in the right direction! We have been reintroduction the pediasure, gradually giving more pediasure and less similac, so far she's tolerating it really well, we're hoping to be full strength by tomorrow! We are 99% sure we will get the okay to head home after tomorrow's appt. so that will put us getting home late tomorrow night...pray for our safe return home. They are calling for snow here so I really hope it holds off till we get out of here.
Don't forget to tune in to FM 102.1 on Fri morning at or close to 10AM as Paul & I will be on the radio thon to support our local chuldren's hospital!
UPDATE: 2-27-06
LATEST:
Gracie had her appt. this morning, they drew blood from her arm not her port, so she didn't like that, but she tolerated it alot better than Paul & I thought she would. We haven't heard the results from todays labs yet. If all goes well at Thursdays appt. we should be home late Thursday night!
If we are back by Thursday, we will be live on Knoxville's local radio station 102.1 at 10:00AM. Friday morning, Mar. 3rd for the Children's Hospital radiothon, tune in and listen if you can.
Gracie's first night out of the hospital was wonderful! She slept SO well! She went to bed at about 9:30 and slept straight through till 8:00, in which she probably would have slept longer but Paul woke her up to give her medicine to her! She slept well last night too, except she was ready to get up at 5:30 this morning, which means Paul & I have been up that long as well, needless to say...I'm sleepy right now. She has only taken two very short naps today, one for about 5 minutes the other for maybe 20 minutes. Everything is going well. She's cutting more teeth so that's been causing her pain, so I'm giving her tylenol and baby oragel for that. We so can't wait to get back home, and back into a routine.
UPDATE: 2-24-06
8:30PM
Gracie is officially discharged, as of around 7 or so this evening!!! We praise you Jesus! There was a delay because Gracie had been having some leaking around her G-tube (feeding tube) so after putting a different size in didn't help the problem, they completly took it out and left it out for a couple hours, in which Paul or I neither one was fond of the idea, because the body will begin to close a hole fairly quickly...which that was their plan, for the hole in her belly to get smaller, but 2 hours is a bit much, I might have been for 15-20 minutes or so...anyway, what I had said would happen, did...the hole closed up too much! I wasn't there but Paul said they put her through so much trying to force it back in, causing her to bleed and all, in which they still didn't get it in, they wanted to go ahead and discharge her with this little temporary one they put in that had a tube you could not take off, until Mon and then they would fix it, but Paul refused, said to fix it today. They sedated her a bit, Paul said she was sleeping until they began trying to dialate the hole, then she cryed and fussed and fought. They did finally get it back in. Had that not happened she would have been discharged probably around 2 or 3 today.
The plan is to bring her back on Mon. then again on Thurs. then more than likely after Thurs. visit we will be able to head home! Oh I can't wait to be back home, in our own place, and our own bed!
THANK YOU JESUS!!! Gracie's numbers are continueing to drop! They are even going to discharge her today,later this afternoon to the Ronald McDonald House! We will bring her back for clinic on Mon in which they will do labs again, then again on Thurs. then more than likely after clinic on Thurs. we can head home! We talked about once back home, Gracie's port could be removed, so we will have to get with the surgeon at ETCH to do that. She still has some wheezing like stuff going on, in which the Dr. has recommended we take her to see an ENT (Ear, Nose & Throat) Dr. As I've mentioned before...just because Gracie is now doing well...don't let up on praying for her...she will continue to need your prayers from now on. Thank you all for everything!
UPDATE: 2-23-06
Gracie's numbers have came down! One has came down quite a bit while the other hasn't come down as much. One of her numbers continues to rise but their not too concerned about it. She has been in better spirits, and looks better. If things continue to go okay, then they may discharge her on Sat. then maybe get to go home next Mon. or so. Keep sending those prayers up, and continue to keep her in your prayers as this will be a life long thing for Gracie. We will always have to be on the lookout for possible rejection.
UPDATE: 2-22-06
There was a misunderstanding earlier today....thank the Lord above Gracie's numbers have came down not just a little but quite a bit! Thank you JESUS! They are monitoring her closely because (this will be hard to explain, although I understand it, it is hard to explain it) the donor liver was positive for something most of us have, the test for to see if Gracie had ever had it was negative, which means they must monitor her closely. Like I said I really can't explain it like the Dr. did...so hope you somewhat understand. Okay prayer warriers, those prayers are paying off...keep it up!
1:42PM
Gracie's numbers have came down although only slightly. Her ultrasound they did this morning, still shows everything okay there. They just gave her another dose of steriods although beforehand they were only going to do it 3 days they wanted to do it one more day, as I said before they can't do it too long because it can cause damage to the kidneys. She has also been spitting up a bit and throwing up some again. Our God is a powerful God and all things are possible through him! Please continue to pray hard for our precious little girl. I have tons of pictures but no way to post them as we don't have a scanner on these computers at the hospital and Ronald McDonald House. We haven't spoke with the doctor yet today, as we do, I'll post the update.
UPDATE: 2-21-06
URGENT!!!
The labs this morning, show that Gracie is not responding to the medications....please pray hard that she begin to respond. Her numbers have gone up even more. The high dose of steroids is causing her to feel bad, she fusses alot and has an I don't feel good look to her. Please everyone get on your knees and pray hard for her...thank God for pulling he4r through this, as this is what God would want for his child. They will be doing another ultrasound tomorrow to check once more for any clots or anything, then if need be another biopsy on Thursday, if she will need another biopsy the Dr. said they more than likely would go ahead and give her blood as she's already on the low end. Thank you all for being Gracie prayer warriers.
UPDATE: 2-20-06
Gracie's numbers have gone up even more today. The results of the liver biopsy are that she is in fact in acute rejection. They will continue with the higher dose of steroids for a total of 3 days they can't do that long term because it can cause kidney damage, they will however continue with the anti rejection med that she's been on and continue with the additional anti rejection med. The side effect of this new anti rejection med is stomach cramps and diarrhea. The surgeon said that this happens to about 50% of kids (rejection) at 7-10 days post transplant. Please pray Gracie responds well with the medication and she doesn't have any pain of her stomach. I'll update more as we know more.
UPDATE: 2-19-06
Julie just called. Gracie's numbers are up and they getting her ready as I type this to go in for a biopsy. They think she is either in acute rejection of the liver or has an infection. Bleeding could be a problem with this procedure so they have a blood supply on standby. They will go ahead and begin to treat her as though she is rejecting the liver instead of waiting for the biopsy to come back and will check her labs again tomorrow. Please focus your prayers accordingly rebuking the negatives and claiming healing for Gracie. I will update again as soon as I have more news.
As always your prayers and dedication on appreciated as they are the wings that carry miracles....Elizabeth
UPDATE: 2-18-06
3PM:
The transplant team ordered an ultrasound stat on Gracie's liver due to elevated numbers in her labs. The ultrasound was at around 1:30 or so, they were looking for a clot or anything like that...the result was everything looked good, good flow, no clots. So they said they will wait to see what her levels show tomorrow, if they haven't come down they will do a liver biopsyin the morning. So they will stop feeding her around 2AM. because if they have to do a biopsy in the morning, her stomach will have to be empty. Pray that her levels will come back down, and all is/will be fine.
12 NOON:
Gracie has been holding down fer feedings...praise God. Her numbers are going up, numbers that can possibly show signs of rejection, but it could just mean they have to adjust her medications in which they have already done a few times. They don't seem too concerned, but Paul and I are a bit. Pray that her numbers come back down and continue to come all the way down to normal and all is well, and will continue to be well. Yesterday and this morning, she hasn't been acting like she feels well, she even appeared a bit pale to Paul & I yesterday. There is no talk of discharging.
I may take the boys on a tour later today to see the liberty bell and some other sights. They have been very good. They ask questions about Gracie. We've been able to stuff pillows and blankets in a wagon and pull Gracie in that, she seems to like it and the boys enjoy doing something nice for her. Robert is painting her a picture right now.
I will update once we know more to update on.
UPDATE: 2-17-06
Latest:
Gracie had the upper GI test done and cryed through the whole thing, not that it was painful because it is not, she was just extra tired and was in the middle of napping when they came to get her for the test so she was just mad. The results showed nothing, everything was good to go...so the doctor said we will just press on with the similac at the rate we usually do her feedings at home and hope that it will simply just resolve itself. She said she would let the others know if Gracie's doing well, it will be okay to discharge her over the weekend. Pray things go well, and Gracie's belly begins to do okay with getting filled.
Earlier today:
Gracie threw up again at 5 this morning. They have her stomach empty so at 1:30 today they will be doing an upper GI test to check things out to see if they see any problems. One thing that was said might be the problem is if the liver is a little bigger than her old liver it could be pushing on her stomach so if that's it they'll slow her feeds down, they'll check to see if she's having a problem emptying her stomach, they'll check to see if she has reflux...just a bunch of different things they'll look for. She WILL NOT be getting discharged today, if we can get things resolved with her belly then possibly this weekend.
Paul and the boys made it safely here, they did stop to sleep for a couple hours. Paul is very tired though, so I left him & Gracie sleeping in the room, and the boys and I are now in the playroom.
UPDATE: 2-16-06
6PM
The doctors' pulled Gracie's last drain out today, they gave her morphine before they did it to help ease the pain. I was surprised though that they took it out today because I thought it would be in for another week or so...not complaining though. The only tube now is the I.V. line that is hooked up to her port. The doctor also said she probably wont get discharged till Sat. or Sun. now, they have to resolve the throwing up first. She has done fine with the pedialyt. So her next feeding they have decided to put her on similac (baby milk) since her formula recipe prior to transplant had a little of that in it, they think maybe that will work, but the goal would be to get back to the pediasure as it has more of the nutriants a child her age needs, since she's no longer a baby and similac is designed for babies.
Previously
Gracie is still throwing up during her feedings, so they have switched her back to only pedialyt. If the throwing up doesn't get resolved...she will not get discharged tomorrow. Pray that they can put her back on the pediasure..without any throwing up. The Ronald McDonald house has approved us staying there, due to Gracie having had a transplant...thank God for that, it's much cheaper at only $15 per night instead of the cheapest motel here at $80 per night! Gracie continues to smile her smile that lights the whole entire room up. I've had the opportunity to share God's wonderful work on Gracie with lots of people, I never fail to lift his name up in the work he's done on her and continues to do. Paul has spoke with the principle at the school and he has agreed to give the boys all their school work for the next week, so Paul and the boys will head up here this evening, putting them getting here very early in the morning...pray for their safe trip. So we will all be here together until we take Gracie home.
If anyone would like to send Gracie an e-card go to www.chop.edu/ecards her room is 4S21 once a day the hospital prints them off and delivers them
UPDATE: 2-15-06
Lots to update on...They have started Gracie on Pediasure so far she has thrown up every time, except this last feeding she has so far done well with....we think the trick is to first start her pump off at a slower rate then gradually increase it. So hopefully that will do the trick, since this is the first "solid" stuff she's gotten in a week. She now has ALL I.Vs out, her port is still accessed but nothing is hooked up to it. I can actually pick her up with more ease now without a bunch attached to her. She does still have the one drain tube coming out of her belly and she'll still have that for a while. They started therapy on her yesterday evening. I spoke with the therapy Dr. back home today, everything will be ready to go for home therapy for Gracie, I just need to call her when I get a better idea of the time frame. There is talk of possibly discharging her on Fri.! That's right Fri. which would only be 9 days post op!!!! God is so good. Once discharged she'll be here another 1 1/2 weeks to possibly 2 weeks. The social worker is checking with the Ronald McDonald house to see if they will make an exception for us to continue to stay there, because she said generally the child would have to have daily appts to stay there at the house. I sure hope they approve it. It only costs $15 to stay at the Ronald McDonald house.
Paul is talking about possibly heading back up here on Thursday if not definatly by Fri. pray for his safe trip back up.
Thanks for everything everyone. I will update when I can. God bless!
UPDATE: 2-13-06
Gracie had a decent day yesterday. Once she begins to hurt bad, and they give her the morphine she calms down then usually goes to sleep. They have already cut her morphine back...to try to begin weaning her off of it. I got to hold her real good yesterday, so that made me feel so happy. In the late night, close to 11 they moved her to a floor, that is for patients who have had transplants and other type surgeries. She also had her first BM last night which is really good, this means they should be taking out the tube that runs down her nose and into her stomach to keep it drained out. Just so you will know the changes...her new room # is 4South21 and the phone number to her room is (267)426-5669 If you wish to send her anything at this point it is perfectly fine to do so....the address is
Gracie Lynn Schommer Rm# 4S21
The Children's Hospital Of Philadelphia
34th St. and Civic Center Blvd.
Phil, PA. 19104-4399
Paul and the boys arrived home about 3AM. this morning. Paul was going to take the boys into school 30 minutes or so late this morning, to allow them to get a little more sleep.
UPDATE: 2-12-06
I didn't get a chance to update yesterday...sorry. Night before last she had a rough night, didn't sleep too well, but once she got another dose of morphine from about 6AM. on she was doing good. Once Paul got back to the hospital we had a changing of the guards (smile) and I went back to the Ronald McDonald house to rest a bit. Paul was with her last night and said she had a couple episodes of being in pain but all in all she had a good night, once I got back to the hospital this morning, in which I thought me & the boys were going to have to walk due to the shuttles being canceled because of the ton of snow that fell overnight, but the hospital security came and picked us up. Anyway once I got to the hosp. this morning, Gracie was smiling her huge, beautiful smile that you can't help but fall in love with. Oh she's so pretty...thank you God for getting our baby through everything! This morning Dr. rounds meeting, they said if Gracie can come off one of her meds, and the nurse said if she has a bowel movement...which will also mean they can begin feeding her, then they'll move her to a floor...and out of ICU!!! So I'll update on that when the time comes...once she's on the floor anyone who wishes to then send flowers and such may do so...I'll post the room number and address then. If you send balloons they can ONLY be mylar NO latex balloons are allowed. Keep it up prayer warriers, your prayers are paying off!
UPDATE: 2-10-06
Paul stayed with Gracie again last night...he said she was actually smiling, so she seems to be more comfortable since they upped the morphine. I haven't seen her smile yet, so needless to say, I'm gelous. I will stay with her tonight, so Paul can go to the Ronald McDonald house. They are expecting snow here tomorrow so, hopefully Paul wont run into any problems leaving on Sunday. The nurse and I are going to give Gracie a bath later. I so want to hold Gracie but we still can't. I know I'll cry when I finally get to.
Keep those prayers rolling...praise be to God!
UPDATE: 2-9-06
7:30PM
Gracie is doing extremly well! Praise his glorious name! If anyone would like to mail a card or anything the address is...
Philadelphia Ronald McDonald House
3921-3925 Chestnut St.
Schommer Room #40
Philadelphia, PA. 19104
The phone number is (215)387-8406 You can call between 9AM. and 9PM. just tell them to put you through to room #40. Also her phone number in her room is (267)426-5669 room 4S21
Please continue to uplift Gracie in prayer...that's why she's doing so well, so keep those prayers going. Thanks everyone for everything. Paul and the boys will head back to Tennessee on Sunday sometime, so pray for their safety. I will remain here with Gracie till she can go home. Once they discharge her from the hospital she has to stay here till about a week, then we'll begin the weekly trips to Nashville and the monthly trips back here to Phili. Thanks everyone!
7AM:
Julie called this morning and Gracie is doing great! Her doctor said she has done better than anyone he has seen. Praise the Lord! She is in a lot of pain, understandably, so please keep her covered as it will take time before they know for sure that she is not rejecting her new liver. Also, pray for the child's family who are grieving the loss of their little one. We appreciate your faithfulness to pray and will keep you updated.....Elizabeth
UPDATE: 2-8-06
9:00PM:
I have just received a call from Julie. Gracie's surgery went very well and without complication. The next few days will of course be a critical time for her. She wanted to thank you for your prayers and asks you to keep praying. Praising God for this good report and trusting Him to keep them coming…Elizabeth
1:00 PM:
Julie just called. Graice's surgery is a go. She will be headed to surgery in the next few minutes. The liver transplant will take approximately 6 hours and I will update you as soon I get an update. They ask that you keep Graice and all the care givers covered in prayer during this next 6-8 hours especially. Thank you for always being there to pray...Elizabeth
9:30 AM:
We got another call for Gracie's transplant very early this morning, Gracie and Paul are now In Philadelphia. The surgeons are pretty sure this liver will be a size match, meaning Gracie would get the entire liver, the donor is a three year old, so please pray for this family who have lost such a precious young life, I can only imagine the pain they must be feeling. The child is in Kansas so the surgeons should be there now harvesting the liver (9:30 AM EST) If all is well, then Gracie's surgery is scheduled to start at noon today, however the coordinator feels it will be later than that. Please pray that this time everything is a go, Gracie does excellent through the surgery and after and that there be absolutely no complications, and she recover well, and gets on the road to her life with a new, healthy liver. Thanks to everyone for your continued prayers for our baby.
UPDATE: 1-24-06
Gracie was fitted today for dafos (leg/foot braces), it will take a couple weeks for those to come in. I'm excited for this, as they say this will help assist Gracie while standing/bearing weight.
UPDATE: 1-23-06
At Gracie's clinic visit on Thursday with the specialist, we talked about how Gracie has only been hospitalized once since the initial hospitalization, so that means over a year now Gracie has not had a high ammonia episode! He said that was very uncommon. I feel that Gracie is so covered in prayer that's the reason...Amen! God is so good! Please keep up those prayers!
UPDATE: 1-20-06
I inquired into a living donor for Gracie, I was told anyone 40 or younger is preferred for Gracie, with no problems, with A+, A-, O+ or O- blood type with a preference of an A type. We talked about possible risks, the recovery time, etc. I feel if Gracie does not receive a liver fairly soon, I want to go through the work-up procedures to see if I could possibly give Gracie part of my liver. I have been talking with a woman in Canada who's daughter had what Gracie did, and she gave her daughter part of her liver. Their both doing great!
On another note I'd like to share the following poem. I hope your inspired by it as much as I......
WHY ME, LORD?
Once I prayed, "Why me, Lord? Look what I'm going through." Now I pray, "Why not me, Lord, if I can uplift you?"
Once I prayed, "Why me, Lord?" That was my constant plea. Now I pray, "Why not me, Lord if that's how you'd use me?"
Once I prayed, "Why me, Lord? why all this hurt and loss?" Now I pray, "Why not me, Lord?" your work was on a cross."
Christ said, "If you will bear your cross as I bore mine, your life will count, my child. Through you my love will shine."
UPDATE: 1-9-06
Gracie still has some wheezing going on, so pray that it goes away. We're giving her three breathing treatments per day but it really hasn't seemed to help.
We recently got a copy of the last therapy assessment, and they have Gracie at a 4-5 month old level, so she is doing what a 4 or 5 month old would do. While reading that it made me a bit sad, but then I reminded myself....it could be worse. I continue to thank God for Gracie catching up to her peers and being perfectly "normal." I ask that you all pray in agreement with me.
We are beginning to plan another benefit motorcycle run, to be in May again, with a rain date in June. I hope everyone that can attend will. Last years was a big success, which brought me to tears seeing all those people come out to support our baby.
I wanted to post this saying as it is so true...
“We don't always have a choice of what happens to us, but we always have a choice in how we respond.”
UPDATE: 1-2-06
I took Gracie to the Dr. today as she still is wheezing a bit and coughing occasionally. He gave her a breathing treatment and had home health care deliver the machine so we could give her treatments at home.
We had a good Christmas. Gracie was much more interested in the wrapping paper than her gifts. God continues to bless us.
Added: 10-29-04
Gracie is 4 weeks of age.
Child's condition:Citrullinemia (urea cycle disorder)
Comments: Please always pray for her, as there is no cure
 
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