Translate This Page To: Spanish German French Italian Portuguese Norwegian Brought to you From FreeTranslation.com Give a gift in honor of this child. Gracie S. Two years post transplant. Family Portrait Article on Gracie titled "Mary's Baby" Current Page Page One Page Two UPDATE: 8-8-08 I have a big, exciting praise report...Gracie has walked like 10 sps all by herself, without holding on to anything! This is just so excited! She's excited too. If she starts walking on her own more she'll be so much happier! The way she took so many steps is by being close to her but as she took a step, step farther back till before you know it she's took 10 steps!   Although she has thrown up 6 times this week, the Dr. just wants to watch her the next few weeks and see what she does. She's continuing to have the major poopy blow-outs, and doing the same when she's fed. So we're hoping this new medication will do what the Dr. thinks it will soon.   Gracie will be starting preschool on Aug. 11th. Pray that things go well with that, and that she gets a good & loving attendant to assist her. I will be going with her the first couple days of school, so I'll be able to fill her attendant in on her, as well as go over her feeding with the school nurse. UPDATE: 8-2-08 The Dr. that is over the longitude study that Gracie is in at Vanderbilt wants her to go back on a medication that she was on before transplant, he feels like her one level that this medication is for is elevated and began being pretty elevated at around the time of her stomach surgery. He feels like she will begin to see those symptoms improve after two weeks. She's also being put on a couple other new medications. She has also thrown up three different times in the last week, which she wasn't supposed to be able to do after the stomach surgery. On a happier note, her walking is getting better and better!!! She's walking faster, of course only with assistance but it's only a matter of time before she's walking on her own, without holding on to anything! UPDATE: 7-21-08 Gracie's EBV level is now down to around 200...major praise! Her white blood cell count is back down to normal. They did a chest x-ray on her because she's been coughing and gunky sounding for a while...it was clear. The scope revealed she has inflammation, colitis, gastritis and esophagitis. They have added two medications. They still don't know why she gets the way she does when she's being fed, so they want to have her blood sugar checked before, during and after a feeding,this is called a formal glucose study, although they did this once when she was in the hospital, and it was fine, they want to recheck it cause the symptoms seem as though she's having what's called dumping syndrome. UPDATE: 7-17-08 Gracie had her scope done yesterday, they did see inflammation as well as several areas that were bumpy and colored so they did several biopsies. Her blood work also shows a pretty big increase in her white blood cell count so we will be doing labs again tomorrow. They said if she runs a fever though to get her right to the ER. UPDATE: 7-3-08 Gracie's gastric emptying test went well, fortunately she fell asleep, because she had to lie flat on her back for over two hours! The test initially showed fast emptying but then slowed down, the overall result was normal. Her EBV level is now down in the 700's which is great, it's on it's way down! Her zinc is low so they have put her on zinc. She is scheduled for an upper endoscopy and colonoscopy on July 14th, in which she will need to be there very early that morning. They are waiting on several stool sample tests to come back as well. UPDATE: 6-23-08 Gracie's EBV level is now down to 1093 which is still elevated (normal is undetected) but it's WAY down from where it was which was over 7000! This of course is a major praise! They will be continuing the medication they have had her on for another month. She had a few appts at Vanderbilt this week. It's still a puzzle as far as her feedings go, and the way she does. She also continues to have lots of diarrhea. They will be doing a gastric emptying test on her on Wed. of this week. If there are no answers there they will be scoping her. UPDATE: 6-8-08 Pictures from Gracie's Disney Trip. UPDATE: 5-29-08 We are currently on Gracie's Make A Wish trip, and Gracie is truly having a blast, except of course while she's being fed and shortly after. Due to the way the feedings have been affecting her we are feeding her the first feeding early in the morning, when she's still sleeping, and the last one late at night when it's bedtime, then two other feedings during the day. One of the daytime feedings is around naptime. We hope that this passes, because feeding her really makes her feel bad, then really tired. We left for Florida on Monday afternoon, we are staying at Give Kids The World, which is just an awesome place! Then we went to Disney World yesterday. Gracie's smiles were worth a million dollars! Today I think we are going to Disney's Animal Kingdom! I will post pictures once we return home. We have only been here not quite two days and I've already taken close to 200 pictures! UPDATE: 5-23-08 Gracie's EBV level this week has actually increased a little. The Dr. here consulted with a couple hematologists who said they did not feel comfortable starting chemo since Gracie is not having symptoms, even though her EBV number is still elevated. The Dr. here also called Gracie's Dr. in Philadelphia who said to put her on an oral antibiotic, let her go home and go on her make a wish trip, then we'll check labs once we return. She is still having episodes during feedings,she does the retching, foams at the mouth, then gets lethargic, then sleeps like it exhausts her, this is very puzzling. One Dr. today said that the getting all lethargic then sleeping may be her body's reaction to all the retching. They did say if it does not get better there are medications for that, but they wouldn't want to put her on anything for that now. She will get to go home sometime tomorrow. Please continue to lift her up in prayer, and to remember us as we travel for her trip, which will be May 26-June 1st. UPDATE: 5-20-08 There is talk of doing a ph probe to rule out reflux although the recent stomach surgery should have done away with reflux, there's been talk of doing an EEG to rule out seizures, and talk of checking to make sure everything is okay with her feeding tube. We have been told that the make a wish trip must be postponed because even if her EBV level is down, they still want her monitored very closely. So please pray really hard on Thursday that her EBV level is down alot! If it's not they will start chemo, and the drug they will most likely used is called rituxan. I will update again once we get the next EBV level, on Thursday. UPDATE: 5-19-08 Most Recent: After Gracie was fed last night, she was doing the retching like she's been doing since her stomach surgery, but her body stiffened up, the nurses felt like she was having a seizure when they hooked her up to the monitors her pulse was 190, which is very high, they called in people from the intensive care unit right away, with 10 or so people in there, her pulse did come down and she slept well last night and is fine today. They want her to be monitored every time she's being fed now. It appears that during this time her heart rate increases, but not sure why. Please continue to pray and to pray hard on the EBV level being WAY down come Thursday! Previous: The doctors have said that if Gracie's EBV level hasn't came down by Thursday then they will start chemo. Please pray really hard that this level not only comes down but that it drastically comes down. This picture was taken during an I.V. infusion of Gracie's antibiotic through her Picc line today (Sunday May 18, 08) UPDATE: 5-16-08 Gracie's EBV level is still very elevated, we thought for sure it had dropped drastically, but unfortunately it has not. They will be placing a Picc line and continuing the I.V. antibiotic. She'll be in the hospital for sure another week. There is still the possibility of scoping her, drawing spinal fluid and bone marrow. Her make a wish going away party has been put off for now. We wont know more until the EBV is checked again next Thursday. This has been discouraging for us, but we realize that God will answer in his time and not ours, so we must learn to be patient, but it's so hard. Gracie has endured so much and yet continues to endure more and more. She is on isolation, so she can't even go outside her door, even just to take a walk in the hallway. She often goes to the door and starts fussing cause she wants out of that room. UPDATE: 5-14-08 Current: Gracie's PET scan and CT scan final results are in. They both show the enlarged lymph nodes in her neck (one on each side) and three in her groin area which we have known about all of these enlarged lymph nodes since the end of last summer. The main thing at this point is getting her EBV level on Thursday, which should be in by late Thursday afternoon. If the EBV level is down enough they'll switch her to oral antibiotic if they have to continue the I.V. antibiotic they will put a Picc line in. When the time comes and they switch her to the oral antibiotic and let her go home they will have to continue to monitor her labs closely. If all goes well and she's allowed to go on her make a wish trip on the 26th they said they could look into where she would obtain those while in FL. Will update once we get the EBV level and have a better understanding of where we'll go from there. Previous: Gracie has been "old Gracie" today and yesterday, although she gets to feeling bad when she's being fed. The surgeon's nurse said the wretching she's doing is part of the recovery process, and gave me some suggestions to try to help her. The Dr. said her liver function continues to do well, and the other labs do too. She is now on her third I.V. because the antibiotic, called gangcyclovir they have her on is strong stuff so it's hard on I.V's. He said if she has to continue on this I.V. drug then they will probably put a PIC line in. This drug can effect the kidneys and blood cell counts so they are checking on that daily as well. We will know on her EBV level Thurs afternoon. If her stools continue to be the way they are they said they may scope her later this week, as PTLD can get in that area as well. The PET scan report says she has the two lymph nodes in her neck, which she has had since the end of summer last year, that her feeding tube site (on the inside) shows inflammation, and something about the spleen is greater than that of a liver which is uncertain significance. Once we get the CT scan report (that was done late this afternoon), we will want them to go over in full detail exactly what the reports mean, because this report is very hard for us to understand. We're still praying, believing that all is well, so please continue to agree with us and pray in the same way. UPDATE: 5-11-08 The initial PET scan results, shows the two enlarged lymph nodes in her neck which have been there since the end of last summer, and some issues in the sinus area, but the Dr. said that would make since because the PTLD was found in the adenoids. I'm not sure when the final report will be completed. The Dr. also said, if her stools continue like they are they will probably scope her to look for PTLD there because it can get in that area as well. Her CT scan is set for 2:30 EST on Monday. Although she has been off her anti-rejection drug now for two days, her liver function is great! A big amen to that! Please continue to pray that her liver continues to function well without the immunosuppresive drug and that this allows her PTLD to clear and therefor not progress into lymphoma. Her EBV level I'm sure is coming down, because today for about two hours now she's been acting like "old Gracie". UPDATE: 5-9-08 The hematologist came in late yesterday evening, he said that PTLD has three stages there is polymorphic, then monomorphic then the actual lymphoma she has polymorphic which is less aggressive. If the PET scan shows cells or tumors or anything anywhere else in her body she would have to start chemo and would go on three different drugs, but w're praying against that! Getting ready to go for the PET scan now, will update later. UPDATE: 5-8-08 2:46 PM So the plan right now is to stop Gracie's anti-rejection drug, but keep a close eye on her liver numbers to make sure she doesn't go into rejection. They are doing a PET scan tomorrow to check for any possible tumors, then on Mon. they are doing a CT scan. There is the possibility that they will do a spinal tape to look at cells in the fluid and also possibly doing a bone marrow extraction. They are starting her on an I.V. anti-viral antibiotic called gangcyclovir, but it is powerful and can possibly cause problems with the kidneys, etc. so they'll keep a close eye on her blood work. The Dr. said I would probably know before they would if stopping the anti-rejection drug is working with getting the PTLD under control because I'd be able to tell by the way she's acting, in other words if she begins to get active and get her energy back, because all she does is sleep or just lie around. I'll update as I know more. 10:41AM The nurse just came in and told me that she just found out they may be doing some procedures on Gracie today, so not to feed her anymore. I asked the nurse, "so it would be a procedure and not a test" she said "yes", I asked her "what could it possibly be", she said "it's possible they are going to draw off bone marrow to see if it has spread to her bones". They also have scheduled a PET scan to be done in the morning, I guess this would be to check for tumors. Please everyone pray rlly had for Gracie, thtns no tumorshing hssrednea h wlllb ae genrol just by lowering her ant-rejection drug. UPDATE: 5-7-08 Urgent Today: Julie called to say they were on their way back to Vanderbilt with Gracie. She has requested urgent and immediate prayers for Gracie. The test results indicate that she does have PTLD but not full blown lymphoma. They will be taking her off the immune suppressants because they can cause the numbers to rise and they must be stopped to get the PTLD under control. This is an effort to prevent Gracie from needing chemo treatments. Taking her off the suppressants could lead to rejection of her liver. Julie is asking that everyone please pray against these things and call for total healing for Gracie. Also, please pray for Julie and the entire family as they walk these dark valleys that they will know they do not walk alone. You will receive updates as they are available….God Bless…Elizabeth for Julie Earlier: The pathology tests on Gracie's adenoids are not fully complete yet, but there is some concerns about the B cells. The final results should be ready sometime today. Also her EBV count is now up to over 8000, which is very very high and the highest it has ever been for Gracie. This of course is a huge concern especially for someone like Gracie who is immune suppressed. They have had us cut her anti-rejection drug back, because this is what can possibly help to bring that EBV level down. EBV in a worse case scenario can cause cancer if I understand correctly. You can research B cells as well as EBV on line to get a better understanding of it. Yesterday evening and also today, Gracie has had next to no energy, she's just been lying around, not wanting to get up, play or anything. I question wether the elevated EBV is the culprit or if it has something to do with her feedings. Please pray hard for her. It seems as though when she gets over one hurdle another comes along. UPDATE: 5-2-08 Gracie got to come home late yesterday. She's on an oral antibiotic and an ear drop antibiotic. I have to take her tomorrow to get labs done locally. We are having to feed her a lot of smaller feedings until she heals and can tolerate it better. She has several follow up appts over the next month. She's doing a lot better, but tires easily and sometimes her pain can't be helped with Tylenol. Pray she heals up quickly, and be ready for her make a wish trip to Disney on May 26th. UPDATE: 4-25-08 Gracie came through her surgery great! The stomach surgery was able to be done laproscopic with only a total of three incisions, one through her belly button then two others. The surgeon had to relocated the hole on the inside that goes into her stomach for her feeding tube but the hole on the outside is still the same. The surgery with her adenoids being removed and the tubes put in her ears went well, as well. He did say her adenoids were very large and that there was fluid in both ears. The surgeon said they wouldn't even begin to put anything into her stomach until tomorrow and they'll start out with clear fluids, then they'll monitor her output, if she does well, they will slowly work up to her full, regular feeds. We want to emphasize that we are giving God ALL the glory for answering our prayers!!! Thanks to everyone for sending all those prayers up. Now for Gracie's recovery and a life now without throwing up being a big part of her life, carrying bags around to catch it in, no more pain from the bad reflux, and no more aspirating and causing the frequent pneumonias. Thank you Lord for our answered prayers! God is SO good! Amen! Previous: Gracie started running a fever yesterday, so I had to take her to ETCH (East Tn. Children's hospital) everything checked out okay, but today she continued to be very fussy no matter what, even while swinging, which Gracie loves to do. So her Dr. at Vanderbilt wanted me to go ahead and bring her to Nashville, to admit her and run some tests, such as her EBV (Epstein Barr Virus) as long as she is fever free, and they don't find any reason not to, the surgery will probably go on as planned on Fri at 9 EST. She's been acting like she may be having some sinus issues because she's been breathing through her mouth most the time, she's also drooling a whole lot. The Dr. did say she has fluid on both ears. Please keep her in your prayers. Thanks so very much. UPDATE: 4-22-08 We will be heading to Nashville on Thursday evening (April 24th) so we will be there to get to the hospital very early Friday morning. If the surgery starts on time it will be at 9 am EST. The ENT Dr is going to be coming in after the surgeon is done, so everything will be getting done on Friday...the stomach surgery, tubes in her ears and adenoids removed. Her hospital stay will be about 4 days if the surgeon can do the surgery laproscopic, if not he'll have to fully open her up, therefor her stay will be longer. Please pray the surgery can be done laproscopicly, that there are no complications and things go great, that her feeding tube does not have to be relocated, and things go well with removing her adenoids and placing the tubes in her ears. I will update sometime after the surgery. Thanks to ALL of Gracie's prayer warriors!!! UPDATE: 4-12-08 We were at Vanderbilt all day yesterday with Gracie for appointments. The first was the ENT (Ear nose & throat) Dr. He wants to put tubes in her ears to stop the ear infections and take her adenoids out to stop the sinus infections. We then had labs drawn, which her anti-rejection drug was undetected (way low) so they have increased that drug, which we will get rechecked in Knox. next week. Finally we saw the surgeon, and talked intensely about the fundoplication (nissen), which is the stomach surgery. The surgery is scheduled for Fri. Apr. 25th, and if the ENT Dr. can arrange it he will do her ears and adenoids at the same time, that way she's just put to sleep once. Her expected hospital stay will be about four days. There is a chance that her feeding tube will have to be relocated, which we really hope they don't have to, but considering where it is currently located, there's a big chance it will have to be. The Dr. said he will first look inside with a camera (through an incision in her belly button) to see if he can do the surgery laproscopicly, but if there is too much scar tissue and adhesions, then he would have to open her up completely, which would mean longer in the hospital and a longer recovery time. Please pray that the surgery goes GREAT, with NO complications, that the feeding tube does NOT have to be relocated, and that this surgery makes a huge difference for the better for her. Thank you all for your continued prayers and thoughts. UPDATE: 4-5-08 We are very pleased to announce that Miss. Gracie is now home! Although several of her labs are still off they let her come home, but we must take her locally on Monday as well as Wednesday and have labs done. They had talked about sending her home with her I.V. to continue I.V. antibiotics but instead sent her home on two oral antibiotics. Her stomach surgery will be scheduled soon. Her blood has to all be at a good level before surgery can be done. Please pray she doesn't get pneumonia, which would set the surgery back. She's happy to be home, as we all are happy to have her home. UPDATE: 3-29-08 Gracie was getting worse instead of better, and continued to run a fever even while on an antibiotic, wasn't holding much of anything down, to include straight pedialyte, was having diareah and crying alot as well as keeping her legs up next to her belly as if she was having belly pains, so her Dr. at Vanderbilt wanted her brought down to Nashville to be admitted into Vanderbilt, to run a bunch of tests. So Gracie & I (mom) are at Vanderbilt children's now, they started three different I.V. antibiotics on her, as well as fluids. All the tests are not back yet, and there's other tests she wants done that they haven't performed yet. The chest x-ray shows pneumonia in both lungs. It is currently 11:00 AM EST on Saturday morning, and already she's acting a lot better. I have just started a feeding, hopefully she'll tolerate it. It is half formula/half pedialyte. If she tolerates it I'll slowly work back up to full strength. Several doctors have been in to see her already, but her main Dr. here is due to come in later. Please pray very hard for Gracie, my heart gets so heavy for her for all that she has endured and continues to endure. She's only three but yet her little body has gone through so much, and continues to. I pray that all her medical issues would resolve and stay resolved. Her liver has worked so well for her, I just pray everything else would go as well. UPDATE: 3-28-08 We got Gracie's bronchoscopy test result back... It showed she is refluxing, although we already knew that, she is aspirating, and she has some bacteria in there. I had to take her to the ER today, in which the chest x-ray looked like possibly the early signs of pneumonia. They would have admitted her, but decided not to, since sometimes being in the hospital you can catch other things, and so they are trying to prevent that since it looks like she will definitely need the fundoplication not. This is the major stomach surgery where it is wrapped as to prevent anything from coming back up the esophagus. Please pray for Gracie. My heart gets so heavy for her, as she continues to have to endure more and more. UPDATE: 3-8-08 Gracie got to come home late Wed. evening. She's on oral antibiotic for eight days. She's sees the pulmonologist on Mon and will have the chest x-rayed Mon as well. On Wed. she'll have more labs done, because a few things were low while in the hospital. At the pulmonologist appt. we will discuss the bronchoscopy that will test her lungs to see if in fact she is aspirating. Please continue the prayers for her. UPDATE: 3-5-08 Gracie is in ETCH (East TN. Children's Hospital) right now due to pneumonia. They are also talking about the possibility of doing the fundoplication (not sure on spelling)on her stomach, because they feel her pneumonias' are due to aspirating and this surgery would prevent that from happening. Please pray for her, and for us to have the wisdom to do what's right for Gracie. UPDATE: 2-9-08 Today is the 2nd anniversary of Gracie's liver transplant! We continue to give God all the glory for all he's done for her and for her liver continuing to work great! The two pictures are from today, she's wearing her "special day shirt". We have a special cake for the occasion, flowers and even a balloon. Although this day is very special for us, we realize there's another family who is grieving the lose of their son, grandson and little brother. Please lift this family up in prayer as this is I'm sure an especially tough time for them. We just sent the family another letter with personal info. in it, hopefully the gift of life program will let it through to them since both parties now agree to take things farther. UPDATE: 2-5-08 I had to take Gracie to the ER very early Sat morning because she had a fever. Turns out she has strep throat and an ear infection. Then I had to take her back to the ER yesterday evening because she was having a lot of phlem which was causing her to have a hard time breathing at times. They checked her out good and sent us home, with a couple more prescriptions. She's doing a lot better this morning, but at times she's in a lot of pain and is very fussy. UPDATE: 1-19-08 Gracie's allergy blood work is back...it's negative! She must have grown out of her food allergies! Amen! So what did we give her back?...Her favorite thing, cheese-puffs! So no more eggs, wheat & milk allergies! Yah! She's been doing really well the last few days, and therapy continues to be going well. UPDATE: 1-3-08 Gracie is coming home today! Please pray she stays well, and therefor stays out of the hospital! UPDATE: 1-1-08 Gracie started running a fever yesterday, so the doctor's at Vanderbilt wanted me to bring her to Nashville, but I convinced them to let me take her to Knoxville. She has been admitted, this time with pneumonia. The doctor said she's be in there at least a few days, and it would just depend on when her white blood cell count comes down, it was 19000 yesterday, and they consider anything above 10000 to be out of range. So pray she has a quick recovery. Paul & I are taking turns staying with her, which is a big reason why it's more convenient for her to be in Knoxville instead of Nashville. UPDATE: 12-28-07 Gracie & I went to Vanderbilt today for her two appointments. The pulmonolagist has put her on an inhaler that is a steroid, but it can possibly cause thrash, so I have to clean her mouth after she breathes it. She hates it too...it will be a big job to do by myself! He also wants to do another CT scan of her lungs, he feels she should have a pulmonolagist closer to us, so he's referring her to a Dr. he knows at ETCH (East TN Children's Hospital). This medication will take about a week to take effect, so hopefully it will help her with this ongoing coughing and wheezing. He said the real Christmas tree we have had could be why her symptoms have gotten worse recently, since we now know she has tree allergies...and mold. The allergist and this pulmonolagist said it's ideal to have no carpet in the house, with the bare minimum being at least her bedroom. So Paul & I are talking of removing it in the rooms she's in the most, which would of course be her bedroom, and then the living room and sitting room. Her growth rate is going well, which is a plus especially considering she's been back to throwing up again. She's been having diarrhea which is a result of the antibiotic she's on...which can cause c-diff, so we did a stool sample, but we don't know the result of that yet. The labs that are back so far is all good, except her anti-rejection drug is too high, which can cause other problems, so we're decreasing her dose, then we'll recheck that locally next Friday. Please continue to lift her up in prayer. Thank you all for all your prayers! On a high note...Gracie enjoyed her Christmas, she actually got into opening her gifts this year! UPDATE: 12-24-07 They will be sending Gracie home today, she's responded really well to the I.V. antibiotics. They'll send her home on 14 day oral antibiotics, then we'll see her two doctor's at Vanderbilt on the 27th. So she WILL be home for Christmas! Amen! Yesterday: I had to take Gracie to the ER this morning, because the side of her neck, jaw, and back behind her right ear was really swollen and tender, and it appeared in only 45 minutes! So she had to be sedated and have a CT scan, it revealed she has parotidis, which is an infection in the parotid gland. She's being treated with I.V. antibiotics. They have done a lot of blood work which is not all back. There is a concern for the EBV (Epstein Bar Virus) that she has. She's still due to go to Vanderbilt on the 27th. If all goes well she'll only be in the hospital for a couple days. Please pray this is a short lived hospital stay. She's home for Christmas and all will be well. For now she is at ETCH (East TN. Children's Hospital). UPDATE: 12-22-07 I had to take Gracie to the ER this morning, because the side of her neck, jaw, and back behind her right ear was really swollen and tender, and it appeared in only 45 minutes! So she had to be sedated and have a CT scan, it revealed she has parotidis, which is an infection in the parotid gland. She's being treated with I.V. antibiotics. They have done a lot of blood work which is not all back. There is a concern for the EBV (Epstein Bar Virus) that she has. She's still due to go to Vanderbilt on the 27th. If all goes well she'll only be in the hospital for a couple days. Please pray this is a short lived hospital stay. She's home for Christmas and all will be well. For now she is at ETCH (East TN. Children's Hospital). UPDATE: 12-20-07 Gracie saw an ear nose & throat Dr. which referred her to an allergist. She saw the allergy Dr yesterday, which the testing revealed she's allergic to some trees, and to mold. The Dr. also spoke of the possibility of cystic fibrosis. I'm assuming we'll talk more about it the next appt. which will be in two months. She will also see the ear nose & throat Dr. in another couple months or so. Last night as Gracie was bunny hopping (crawling) around, she made her way over to the gifts under the tree, I had to scurry over really fast because she was just about to tear into them (smile). This Christmas I think she'll really get into it. We wish you all a very Merry Christmas and a Happy New Year! Remember...Jesus IS the reason for the season! UPDATE:12-6-07 We received letters from Gracie's donor family today! They are from the mother and grandmother. As I had sensed all along, the child was a boy and his name was Derek. He died two days after a house fire. Both letters were hard to read, but I'm glad they have now replied. They would both like to see pictures and to someday meet. They are from Kansas. Please continue to remember this family, especially during this time of year, as Derek would be even more missed. UPDATE: 11-27-07 Gracie's x-ray done yesterday showed that the pneumonia is gone but the Dr. said it showed something else, he told what but I don't remember but that it can be present when there's a cold and such but that it's no big deal. She will see her Dr. at Vanderbilt and also see the pulmonolagist on Dec. 27th, but before that she will see an ENT (ear, nose & throat Dr.) here at ETCH (East Tn Children's Hospital) UPDATE: 11-20-07 I had Gracie back to the Dr. today, because her coughing and wheezing has continued, although I'm still giving her breathing treatments and antibiotics. They did a chest x-ray, and as I feared, she has pneumonia again. They have increased the antibiotic, and as long as she doesn't get worse or start running a fever (a sign the pneumonia is getting worse) then we'll just repeat the x-ray on Mon to check on it. Pray it goes away with the oral antibiotic. It is low in the lung, so her Dr. at Vanderbilt is consulting with the pulmonologist about that. UPDATE: 11-13-07 Gracie was scoped again, and there was very few eosinophils present, she has gastritis again and she had a strange red area in the figure X so the Dr. took a biopsy of that area, which we are still waiting on. They are keeping her immunosuppresant at a low dose due to the EBV (Epstein Barr Virus) She is back to throwing up yet again. to the Dr today because she's been wheezing. She put her on breathing treatments, and on an antibiotic. She has started getting therapy now through our school system, which it is going well. She has some very good therapists there (thankfully). They are using a regular walker with her. I had her 3 year pictures taken recently, so I'll post those soon. UPDATE: 10-8-07 Gracie's Dr. discontinued one of her medications and since doing so Gracie hasn't thrown up at all, and that's been about a month or so now, also her mood has improved since stopping the drug. We're hoping she wont have to go back on it. On Friday we went down to Vanderbilt because they had asked if we would allow Gracie to be in a study, they are studying urea cycle disorders, and they wanted someone who has had the disorder then had a transplant. They will follow her for years. They did an intense developmental assessment, which they rank her from 6 months to something like 15 months, but other recent assessment local have her from 9-18 months, I think she ranked lower there because she wasn't in a very good mood. She has also been cruising a little more! So she continues to improve. Sorry this update was delayed but life gets busy, so I'll try to post sooner next time. UPDATE: 9-12-07 I haven't spoken to the Dr. about the results yet, but have spoke to the nurse practitioner, she said that the enlarged lymph nodes in her neck are the same size, she has some issues going on with her sinuses and she said that reflux can be bad enough to get up into the sinuses so that could be the cause for that. She also said that in Gracie's lower left lung there was some collapsed air sacs, when I asked what we do for that she said as long as she's not having any trouble breathing we do nothing. During the PH probe test she had thirty something reflux episodes with the longest lasting 4 minutes. Hopefully the Dr. will call soon to give her take on all these results. UPDATE: 8-26-07 Gracie is scheduled to have a PH probe done on Sept 6th as well as another CT scan to check on the masses in her neck. Her EBV levels are back up again. UPDATE: 8-24-07 Gracie's appt at Vanderbilt on Tues went well, but the Dr. is some concerned that Gracie continues to get a fever every 1-2 weeks for no apparent reason so she had us take her down for a chest and stomach x-ray just to check on things there, it checked out fine, it just showed on the right middle lung a tiny nodule (lymph node) that she said was probably left over from a past pneumonia. Her labs show the anti-rejection level a bit on the low end but they are going to leave it be for now, her EBV level is back up to 773! We were hoping it would be back down at the normal range but it has gone back up instead. She will be doing another CT scan to check on those masses around the first week of Sept. and at the same time they will place a PH probe which will have to stay in place for 24 hours, which will log any refluxing and how bad and long it lasts. The appt with the surgeon was lengthy as we had lots to talk about concerning the fundoplication. Although the Dr. is comfortable proceeding on with the tests/results he already is, Paul felt better about having another PH probe done. The Galloways will be at our church (Prospect Baptist) this Sun (Aug. 26th) at 10:30, we're looking forward to hearing them sing, and as always just seeing them! UPDATE: 8-14-07 The G.I. doctor at Vanderbilt just called, Gracie's rectum showed a little inflammation, her esophagus was normal, her stomach has gastritis, the pulmonolagist is concerned that her airway showed inflammation and that he feels she's probably having bad aspiration, her intestines is inflamed, she has lymphocyte cells which could mean she does in fact have PTLD (what we've been strongly praying against), they are still waiting on the biopsy results (not biopsy of the masses in her neck) which is checking it for EBV. Although the Dr. hadn't planned on doing another CT scan for 4-6 weeks from the last one, she mentioned she may do one sooner. Please continue to pray against Gracie having this EBV or the PTLD. Will update when I know more. Thanks! UPDATE: 8-8-07 We're SO excited! Gracie pulled to standing three times yesterday! Then today she did two times, and the last time, she stood for a whole 15 minutes!!! This is such a major celebration for us! The tests that were done yesterday at Vanderbilt will take a while to get back, I will update when we get those. We did learn that her anti-rejection drug is now too low, so we have raised the dose, we will get that checked as well as the EBV and several other tests done Tues of next week locally. She will be having an MRI done at ETCH (East TN Children's Hospital) in the morning, this is to check her brain to see if there has been improvement over the past year. Please pray not only that there has been improvement, but that there has been big improvements! UPDATE: 8-2-07 Gracie saw the Dr. at Vanderbilt on Tues in which she did more labs. Her EBV (Ebstein Barr Virus) level from earlier in July was 808, then we got last Thurs and this past Tues levels today which last Thurs was 920 and Tues this week was 925, the nurse said the Dr. would be calling us, I guess she'll be discussing things with the Dr. in Philadelphia, so since the numbers have gone up instead of down, this may mean they'll do a biopsy. On a good note her anti-rejection level is at a better place, and all her other liver functions are great. God is good, and we ask you pray in favor of Gracie's numbers coming down and that if they do a biopsy, it will reveal a negative reading. Thanks everyone. I'll update more when we hear from the Dr. UPDATE: 7-27-07 LATEST: I received another call from Gracie's Dr. at Vanderbilt, who finished up talking with her Dr. in Philadelphia, who said considering Gracie has no symptoms (mostly fever), then we watch & wait, if there is a fever we are to get to Vanderbilt, which labs will be done and possibly admitted. If there is an uneventful weekend (pray there is no symptoms) then she will see her Tues or Wed. and she will probably be scoped again. The pulmonolagist said that the masses could simply be an onset of infection, which could be pneumonia because the scope showed that possibility. The labs for the EBV (Epstein Barr Visus) wont be back till Thurs of next week. Her anti-rejection drug is still higher than they'd like so we are decreasing that even more. There is still the possibility of needed to do a biopsy, which it will be discussed if that's the case wether it will be at Vandy or at Philadelphia. The masses measure 2cm and 2 1/2 cm, the talk was mentioned of the posibility of post transplant lympho proliferative disorder. We are praying against this and that the masses are simply due to an infection which can be treated by a simple antibiotic. This has all gotten me very uptight, the devil is really getting on my nerves! PRAY! Thanks everyone! I received a call from Julie. Gracie's CT scan revealed two masses in her neck. They think it is Post Transplant Oympho Proliseratizp Disorder (hopefully I spelled it correctly) and if so would have been caused by the DVB. They will possibly do a biopsy to confirm either in Vanderbilt or Philadelphia, and if it is confirmed, her anti-rejection drugs will have to be discontinued and she would need to undergo chemo. She said it wasn't cancer but it is treated in the same way as cancer. This will all need to be done quickly and they will most likely be in route today. Gracie and her family need your continued prayers and support. Please lift them up in prayer. I will update when I know more...Elizabeth UPDATE: 7-24-07 Gracie's recent labs from Vanderbilt have come back and her EBV lab showed the numbers elevated, so her Dr. at Vanderbilt and her Dr. at Philadelphia discussed it...she will be getting sedated and having a CT scan done of her head all the way down to her belly at Vanderbilt on Thurs (July 26th) in the morning. EBV (Epstein-Barr Virus) can be caused from being on the anti-rejection drug, so they have decreased her dose in half, they will also be drawing labs on Thurs morning to check these levels again. Please pray that Gracie is clear and DOES NOT HAVE EBV, because if she had that it would not be good. You may research this on line for a description of EBV. Her scan is planned to begin at 11:30 EST. PRAY UPDATE: 6-30-07 Gracie & I made it safely home yesterday around 2:00 pm It's so nice to be back home, we missed everyone so much, and sleeping in our own beds...there's no place like home! So Gracie is allergic to eggs, wheat and milk. They have us starting out with only fruits & vegs, introducing only one at a time and a week apart, we are to make note of any changes such as throwing up or a rash. Once she has been given 5 different foods the Dr. at Vandy will re-scope her...this is the plan after every 5 new foods have been added. This morning is the first time in about a year that we have fed her orally, and she actually did quite well! Every time she would take a bite, or even just kiss the spoon, Paul would reward her with blowing bubbles (she loves bubbles). They have also suggested we consider Gracie going to the aggressive feeding therapy program they have there at CHOP (Children's Hospital of Philadelphia) It is for 4 or 5 weeks and your there everyday all day for three meals, so basically we would have to live there in Philly during the program. They said that they have a good outcome even with children like Gracie, who have been tube fed for so long, and really could care less for food. Our prayer is that Gracie will someday eat enough by mouth to have the feeding tube removed. This will be a long road, that will require lots of patience, so please continue to keep Gracie & us in your prayers. UPDATE: 6-25-07 Gracie's first allergy appt. on Tues. showed no allergies to the things they tested for that day...which consisted of like 22 needle pricks. This mornings appt. with the liver Dr. went well (it's always nice to see these wonderful people) they took a stool sample to check for c-diff, the nurse said it even had that c-diff look to it. If it's possitive that could also be a big part of her pain episodes. We are now killing time till her next allergy appt. which is in a little over an hour from now. I'll update later in the week. She has one more allergy appt. at 2:30 Thursday, then we'll begin heading home. I'll drive for several hours then stop, and drive the renmainder on Fri. Pray for our safe travels back home. UPDATE: 6-21-07 Gracie & I made it safely to Philadelphia, although it was a long drive because I ran into some really bad traffic so it took like 13 or so hours. Gracie has continued to be in pain since stopping some of her medications. I will find out today how long she will need to be off it. I'm really hoping not until late next week, she'll just be miserable! We are at the hospital library now, killing time till her first appt. UPDATE: 6-19-07 Gracie & I will be driving to Philadelphia early in the morning, please pray for our safe travels especially for me on driving (I'm not use to driving that far on my own) We will be there till Fri of next week. Pray for the tests she will have to do. We have had to stop a couple of her medications to prepare for the tests, and she's definatly been feeling the pain, especially from stopping the zantac. She's also back to throwing up...which may be a result of stopping the zantac. I will update when I know more. UPDATE: 6-7-07 We got Gracie's lung CT scan results today...it shows she has some asthma, but not enough to do anything about. The sinus CT scan showed sinus disease on the right side so they will treat that with augmentin for three weeks and see if there is improvement in her chronic cough, if there is then great, if not then they will look at what else they will do. So pray this medication works and that the asthma doesn't get worse. UPDATE: 6-5-07 Gracie has done something VERY exciting for us! She stood up all by herself!!! She pulled herself up to her feet at her picnic table with her hands on the bench then put her hands on the table and stood there for about two minutes!!! We're so excited for her...I can't wait for the day she's walking! Oh what rejoicing we'll do!   She has continued doing pretty well without any throwing up, she occasionally has been but not a huge amount. UPDATE: 5-25-07 Gracie saw her GI Dr. at Vanderbilt yesterday and that visit went well. Today she had the CT scan of her lungs and that went well, she woke up from the sedation really well...no fussing, no throwing up, as she often does. There was two very nice volunteers with the Make a Wish that came out to our house on Tues evening to talk about Gracie's wish! It was all very exciting. They even brought all the children a gift when they came which was so very thoughtful! They said it could take 6 months before the wish could actually be granted and that when the time comes, they'll come back out and give us a going away party! How exciting it all is! I can't wait to see Gracie's face when she meets Mickey! Gracie's throwing up has continued to be going well, she has only thrown up three times in the past two weeks, and those weren't huge! UPDATE: 5-17-07 Gracie's throwing up has improved over the past five days...pray it continues! Her appts for this week at Vanderbilt had to be postponed till next week due to the pneumonia. The 3rd annual "Baby Gracie" Ride was once again a huge success...we thank EVERYONE involved very much...God bless you all! If Gracie could talk she's say, "Thank You" as well. UPDATE: 5-11-07 Gracie has the pneumonia...please pray she's well soon. She has a shot of antibiotic and now on 10 days of oral antibiotics. UPDATE: 5-9-07 Just a reminder that the "Baby Gracie" Ride is Sat May 12th Registration begins at 10 with the first bike out at noon, once the riders return we'll do lunch and door prizes! From Knox take 75 South, exit Loudon (exit #72) take a left, follow till you come to the red light (couple miles), go left at the light, then follow till you come to Loudon High School on the right (about a mile or so) Pray for a beautiful day! NO rain! UPDATE: 4-11-07 Gracie is once again back to throwing up, and the diarrhea has gotten worse, but I'm sure that the diarrhea is due to the antibiotic she's on. My prayer is that all of these issues Gracie continually has seems to be having will cease to exist and never return! She will be having a CT scan next month at Vanderbilt because the pulmonolagist did not like what he saw on her x-ray that was done there last week.   I try hard to be strong, and usually I am, but I admit I'm human and I sometimes grow weary of all of Gracie's problems, and think...how much more must she have to endure...? It hurts to see her in pain...and yet she continues to smile that beautiful, big smile of hers that lights up any room. I ask that each of you reading this pray fervently for Gracie that she get better and remain better, that all these problems she seems to be having will cease to exist, never to return...and give thanksgiving for her liver continuing to work so greatly! UPDATE: 4-9-07 Over the weekend Gracie had a big boil like thing come up next to her g-tube (feeding tube) I called the Dr. he said as long as she doesn't run a fever or her pain gets any worse it could wait till today...I took her to the surgeon today...the boil had popped and it left a hole. They did a test to make sure the hole didn't lead to her stomach, so they put dye in her and checked for leakage, there was none. They also did a culture in which it will have to have 24-48 hours to see if it grows anything. In the meantime they have put her on a 10 day round of antibiotics. This place is causing her pain, so pray it heals quickly. Her throwing up is some better. I picked up the new med the GI Dr. is putting her on (for reflux) and the zyrtec (for seasonal allergies). Thanks everyone for all your continued prayers for Gracie! UPDATE: 4-4-07 Gracie saw her GI Dr. and a pulmonary Dr at Vanderbilt today. The GI Dr is going to try another reflux medication on Gracie to see if that will help with her throwing up. She did labs but don't know any results yet. She sees her again in six weeks. As for the lung Dr he asked lots of questions, he thinks she may have seasonal allergies, he gave me a prescription for her but said not to fill it till we get the okay, that it's okay post liver transplant to take. Her also did a chest x-ray, and depending on what it looks like will depend if he does a cat scan on her in 6 weeks when she sees the GI Dr. again. UPDATE: 3-28-07 Gracie threw up twice today, once yesterday...you just never know when she will or wont throw up, but it is always during or shortly after a feeding. We finally have an allergy appt. up at CHOP (Children's Hospital of Philadelphia) it's not until June though, and she'll have to be there a week. She sees the Dr. at Vanderbilt next week, and will also see a pulmonary (I think that's what you call them/lung Dr) to check her because for months she's been rattly, but once she coughs it goes away. UPDATE: 3-20-07 We're going home!!! The Dr. said if once we're home she runs a fever of 100.5 or higher go to her pediatrician for him to do a blood culture, and to allow her to remain on half and half the rest of the day and increase it after that as she tolerates it. The impetigo is already looking much better and she can resume therapy once we return home. Thanks for all the thoughts and prayers and pray the fever does not return and she begins to tolerate full feeds. Earlier Gracie does have impetigo (not sure on spelling) so they are treating it with a topical antibiotic 4 x's a day, she's now back on isolation due to this, which means no more walks in the hall, which she enjoys (as do I). She threw up her last feeding yesterday which was full strength, so this morning it was back to half & half. So far every single test done has been negative...maybe the fever and such was because this impetigo was brewing??? However I don't think that causes throwing up. Yesterday evening the doctors' thought they were going to let us go home till they saw her face, with the blisters on it, which is caused by the impetigo. We started the antibiotic ointment last night, and it already looks some better. It itches so she wants to scatch on it...but this can cause it to spread, so we're having to sterilize her pacifier frequently and clean her and my hands. Her moods switch from whiny to playing, and she has been this way ever since we got here. UPDATE: 3-19-07 Gracie threw up quite a bit after her 1:00 feeding. She now has blisters all around her nose, and several on her face and one on her neck. The Dr. that looked at her a little while ago, feels it is impetigo, but she is having another Dr. that is over her come look at it. If in fact she has this she will have to go on antibiotics. I'm not very familiar with this, so it's best to read about it online...it will explain it much better than I. Earlier: Gracie threw up her full strength yesterday evening, and she also ran a fever again, so they did a belly x-ray. Her anti-rejection drug is a little on the low side, which is expected with throwing up but the Dr. doesn't want to adjust it at this time. She wants to do more labs in the morning. We went back to half strength on her formula which she spit up a bit after her first feeding and she just finished her second feeding. She hasn't had a fever since last night, but she continues to be fussy off and on. The c-diff test was negative so now she will be off of restriction, therefor I can take her out of her room, so I'll take her for a walk later, hopefully that will help her. Depending on how she does today and tonight...maybe go home tomorrow. 19 Mar Gracie began running a fever again yesterday evening (102), she tolerated full strength feeds, although a few times she has acted like she was going to, but didn't. They did a blood culture while she had the fever, but that takes two days to grow, but so far nothing has grown. She is beginning to get really tired of being in that room, so she & I have started taking walks...which seems to help. She napping now. The doctor's said we'd wait to see what the labs say (they took more blood this morning). I fully expected we would only be here one night, so I only packed one change of clothing...I'm wairing a St. Patrick's day shirt today, although it has passed...I guess I need to do some laundry. Please pray they figure things out so we can get back home where Gracie is always her happiest at. UPDATE: 3-17-07 Gracie continued to throw up this week, but yesterday she also began running a fever...a call to the Dr. and she said to bring her to Vanderbilt, to be admitted. So far all the tests that have been run looks good, we are still waiting on a c-diff result, and her anti rejection drug level. She has kept down pedialyt, and just recently I fed her half firmula half pedialyt and she has kept that down. If all continues going well...no more throwing up, no more bad diareah and no more fever then she may go home tomorrow. Pray this will happen and she just has/had a bug. UPDATE: 3-14-07 The 3rd annual "Baby Gracie Ride" is set for May 12th with a rain date on June 2nd. Registration starts at 10:00 am and ride begins at 12:00 noon. Contact info. Paul(865)389-1095 or Jason (865)250-3496. We will be having a raffle for a VERY nice "mini" chopper! With a custom paint job! The ride once again will kick off at the Loudon High School, in Loudon, TN. Hope to see you all there! UPDATE: 3-3-07 Gracie has been having the best of days, she seems to be without pain and in a great mood! She can now wave "bye" with her hand if you stabilize her arm for her!!! We're so excited about this, as Paul & I have wanted her to wave goodbye for a really long time! Such little things that we use to take for granted, we no longer do! Keep up those prayers, cause there working! Amen! UPDATE: 2-26-07 Gracie's doctor's nurse called on Friday and said that the biopsy results are that it showed decreased eosenophils (not sure on the correct spelling) and mild gastritis. Considering there has been this big improvement leads us to believe she could have a food allergy since she has been on 100% elemental diet since the last scope. Will update when there's more info. UPDATE: 2-20-07 Gracie did well with getting sedated for the scope today. She did the same as usual coming out of it...very fussy, doing a lot of dry heaving. She eventually did throw up, which included a couple blood clots but they said it was normal, they gave her stuff in her I.V. to help with the nausea, which helped and allowed her to get a 45 min nap. She slept very little on the way home, but has looked very sleepy all day. As a matter of fact she played while lying down. The initial results for the most part looked normal. There was an area that was red, in which the Dr. didn't have an explanation for, she said we'd have to wait and see what the biopsies show, which she said should be back by the end of the week. She's resting well in daddy's arms right now. UPDATE: 2-17-07 Above is Gracie in her new pony walker and asleep in her high chair and Gracie's one year post transplant celebration! UPDATE: 2-8-07 Gracie's appt. in Philadelphia has been postponed until sometime in March due to Gracie's Dr. having cancer (please remember her in your prayers) also they are trying to coordinate her allergy appt. and liver appt. to be close together (therefor one trip for both). They are comfortable doing this only because her Dr. at Vanderbilt has been seeing her closely, also she use to work with the doctors' in Philadelphia. Gracie had a stool test done which was negative for c-diff, but since she's having symptoms the Dr. has ordered a retest, which was dropped off today...should know that result tomorrow sometime. Gracie continues to throw up and acts like she's in pain several times a day. Tomorrow (Feb. 8th) is Gracie's BIG one year anniversary!!! Her liver continues to work terrifically! Although this is an exciting celebration day for us, we realize it is the opposite for another family who this will be a one year memorial day. Please remember Gracie's donor family during this time. UPDATE: 2-5-07 Gracie is yet again back to throwing up again, her stools have been having a real foul smell, and she's been fussing alot. Paul called the Dr. today, and she wants to retest her stool because she's afraid she has c-diff yet again, although she's still being treated for it currently. The dosing on the antibiotic started out more frequently then we slowly taper off, we noticed a change in her with the first tapering. The Dr. said if she does test positive she will talk to the infectious control folks about it. The antibiotic that she's currently on is very strong, I'm not sure what they would do if it is positive, I'd imagine they would admit her and do I.V. antibiotic. Please pray for her that she get over all these problems permanently. UPDATE: 1-31-07 As of right now the only appt. Gracie has in Philadelphia is on the 12th with the transplant folks...they are working on the allergy appt., due to this it's possible the 12th appt. may change. She's still set to be re-scoped on Feb. 19th at Vanderbilt. She's been doing well with not throwing up, just an occasional spit up for the most part. She's really been enjoying her new freedom on her walker, as a matter of fact if your close by she'll run you over (smile). We are beginning to plan another motorcycle ride, to be held on May 12th with a rain date of June 2nd. Will post more info. on that as the date draws nearer. UPDATE: 1-19-07 The people from the allergy clinic at CHOP (Children's Hospital of Philadelphia) called today, said that the appt we got (Feb 8th) has to be rescheduled due to an overbooking on that day, should be able to let us know of another date in a week or two. So the transplant Dr. appt. on the 12th may be changed as well...to only have to go up once, to do both. We would be there for about one week, to do all the testing they will do. Gracie will be going to Vanderbilt on Wed. the 24th due to some lab results they got from last time she was there. They will do more labs and do an x-ray as well. Gracie got a new pony walker (a high tech walker to assist with walking) once I get a picture of her on it, I'll post it. She loves being in it! She looks like such a big girl. Gracie WILL walk someday independent though! UPDATE: 1-15-07 This picture was taken in Minn. early Jan. Gracie's first big snow and sledding experience! UPDATE: 1-13-07 Gracie is back to throwing up...and she has tested positive yet again for c-diff! They are putting her on an antibiotic this time that is normally given via i.v. but they are compounding a drug to be given orally. It will be given for 6 weeks. Since she has the c-diff they will not be able to scope her on Mon. it has been rescheduled for Feb. 19th. Her appt. for Philadelphia has been scheduled for Feb. 8th she will see the allergy people then probably on the 12th the transplant people. UPDATE: 1-6-07 Gracie has been tolerating her feedings lately. We have been doing five feedings per day for a while, which was doing the trick, so yesterday I went back to just the four feedings and she did well with that. Hopefully she'll continue tolerating it well. She's finished the antibiotics for the c-diff, and she's doing much better now (no more pain). She'll see the Dr. at Vanderbilt on Wed. (jan 10th) then on the 15th she'll be sedated and be scoped again. UPDATE: 12-25-06 Gracie's Feb 8th appts up in Philadelphia need to be changed. The transplant coordinator said the allergy folks called saying that date wouldn't work after all, but they would look into another date, she told them that later wouldn't work...only earlier. Gracie has started to lose some weight, not a whole lot, maybe two pounds over the past couple months. I'm continuing to give her less than full strength formula, as she can't tolerate it. I'm working on adding a little more formula. I have added another feeding to try to get all her calories in that she needs. It's stressful, I know Gracie's very tired of it. Often before throwing up she crys, so it must be hurting, but after she has thrown up she's perfectly fine. The throwing up has definitely declined since I've been giving her less than full strength, I just make up the difference with pedialyt. Continue to pray that her belly issues resolve, never to return. Hope you all have a very Merry Christmas and a Happy New Year! Gracie has again tested positive for the c-diff, so the Dr. has called in antibiotics for her today. Please pray it once again clears itself and STAYS away! When she had it before I had a couple women e-mail me, telling me they once had it and it is very painful. This sweet little babe just can't seem to get better and stay better. UPDATE: 12-11-06 Gracie will not be going to Philadelphia until Feb 8th, in which she will see the transplant Dr. and the allergy Dr as well. The allergy Dr will be doing allergy testing, in which they will want her there for a week, so she & I will be there the week of the 8th (of Feb) and Paul will stay home with the children. Pray for Gracie and these tests they will do. She continues to throw up at least one good time per day. UPDATE: 11-30-06 Gracie's appt yesterday went well, although we haven't gotten all the labs back yet. The Dr. said it's possible Gracie's throwing up again due to coming off the steroids. The only other change that was made was her arginine (another medication) was increased two week ago. She will see her again Jan 10th and will re-scope her on Jan 15th. Her appt. at CHOP will tentatively be Jan 8th, and we're hoping to coordinate her allergy testing while she's at CHOP as well. The Dr. also wants to put her back on prevacid to see if that will help her tummy, she said it would take a good three weeks before it would start working if it's going to. UPDATE: 11-24-06 Gracie has begun throwing up again, there for a few days it was just once a day, but yesterday it was four times. It seems as though when she's put on a new formula things get really great for a while then she gradually begins it again. Please pray that the throwing up and diarrhea not only stop but doesn't come back.   Hope everyone had a very Happy Thanksgiving. UPDATE: 11-15-06 Gracie's appt. today went well. The ammonia level the Dr. ordered was at a good level, the x-ray the Dr. ordered showed everything continues to be cleared up...Amen! Her anti-rejection drug level is still a bit on the low end so she's done a small increase, just trying to come up with a good level. Gracie's allergy appt. that was scheduled for Fri. was changed to today, but the Dr. couldn't do the needle prick test due to Gracie being on steroids. The allergy Dr. suggested when she goes to CHOP (children's hospital of Philadelphia) that she see a Dr. there that does what is called patch testing, so we may do that instead. She's due to go there sometime in Jan. Meanwhile he said continue offering her nothing by mouth until two weeks after she's been off the steroids then offer one thing at a time no closer than one week apart and note any changes, such as throwing up, diarrhea etc. UPDATE: 11-11-06 Gracie's doctor in Nashville called yesterday evening. We talked extensively about Gracie's labs. She said they are kinda wacky, they almost look as if she has a urea cycle disorder, which the liver transplant took away, she's puzzled about it and will consult another doctor. Due to these labs she wants to see her again next week, in which she will also do an ammonia level. Her ammonia has never been checked since just after transplant, as there hasn't been a reason to, since she no longer has citrullinemia. We did talk briefly about the donor liver possibly being a carrier, just as Paul & I are. She said if she were to start acting funny or get lethargic or anything then of course she would need to be seen right away, if not she'll see her on Wed. morning. Gracie has actually been doing remarkably well, she's only occasionally spitting up, no more throwing up, she's not had any pain spells, she's been playing well, and being happy, and of course smiling alot...that's our Gracie! Please pray for Gracie that ALL these issues would resolve and resolve permanently, so she can go on being her happy little go lucky self.  UPDATE: 11-8-06 Gracie's appt. went well today. The Dr. gave us directions on weaning her off the steroids, which will take a total of one month to get her completely off of it. Her anti rejection drug level is still a little on the high side so she's decreased the medication even more, and wants her to get it checked locally on Fri. The x-ray today checked by the radiologist said that she is now free of the pneumatosis intestinosis! A BIG amen to that! She's starting to get a little cough, pray that it doesn't end up being a big deal. She will go back to the Dr. in three weeks unless the cold symptoms get worse, then she would go back next week. UPDATE: 11-6-06 Gracie got discharged today so we are now safely back home...a BIG amen to that! Her x-ray that they did before they discharged her looked much better than previous ones. She will go back down on Wed. in which they will do another x-ray then as well. The c-diff was negative every time they repeated it, so she's no longer on the antibiotic for that, they also cut her steroids in half, but hope to soon stop it all together, right now she's on 2ml of anti-rejection in the morning and 4ml at night. Gracie continues to do well. They are giving her half her normal dose of antirejection medication in the morning and her normal dose at night. Yesterday it was just a tiny bit on the low end. She is being fed now and will be going down for another xray shortly, I assume if it looks okay they'll let her go home, I am specualting on this. Will update more later. UPDATE: 11-4-06 Gracie's antirejection drug level was still elevated yesterday so we held her medication last night and this morning, pending the level from this morning, we haven't gotten todays level back yet. The Dr. said that being on the antibiotic she's been on for c-diff could be the cause, today is the last day on that so they said once it's stopped the level of the antirejection drug may come down. Her first feeding today was the full amount, she did fine as well as the two feeding yesterday at half the normal amount. They said if she continues to do well, she can go home tomorrow, but they would do another xray before releasing her, then she would come back down to see the Dr. on Wed. and do another xray then as well. They said as the pain episodes stop that's a sign this is resolving! She hasn't had a pain episode since they did the stat xray. Praise be to God! UPDATE: 11-3-06 They did an x-ray last night in the middle of her pain episode, although once they were doing it, she was about over her pain, that result looks the same as the x-ray without being in pain. She had a very good night last night, she slept very well. Paul left late yesterday evening and arrived safely back home. He brought and left his laptop computer, so I'll be able to update right here in Gracie's room. They drew labs this morning to check her anti-rejection level again, we probably wont know that result till sometime this afternoon. The CT scan last night basicly was a good report everything looked good, just confirmed she has this, but there was no risk seen to call for surgery (pray, believing and thou shall receive...Gracie will not need surgery amen!) UPDATE: 11-2-06 6:08 PM Gracie is in now having a CT scan done. She has had to be sedated as she will have to be still! The doctors' came in this afternoon while Paul has been down with Gracie, I remained here in the room and spoke with them about her...they are interested in doing an xray in the middle of one of her pain spells so they want me to have the nurse page them right away if she has a pain episode. She hasn't had one since yesterday morning. Their a little concerned that she has had no poopy, nor have I heard her passing gas. So I'm to keep an ear out for that. If the CT scan looks okay they will probably start her feeds back fairly soon, slowly and on yet another formula one that is even more broken down than the one she's on now. There's a chance they may chance the type of antirejection drug she's on as well. Her antirejection drug level is beginning to go up again, so they want to hold off on that drug tonight and give it to her in the morning at half the dose. Keep praying! 11:57 AM Gracie only slept for maybe three hours last night, but the time she was awake she was in a good mood. I've already thanked God for her being okay, wether it be by surgery, or without...she will be alright, so everyone pray in agreement with me! Thank you God for Gracie being okay, for giving the answers on that xray, thank you Lord for leading the doctors' as they care for her, and Lord help us to have patience. They repeated Gracie's chest xrays last night just to confirm it. They have her on several I.V. antibiotics, and are giving her nothing on her stomach aside from medications. Paul & I assume this is in case of the need for surgery. Please pray with us that this will be worked out with medication and this baby will not have to have yet another surgery. God placed a very loving nurse in care of Gracie last night, who knew our situation so knew that I had nothing, before she left lastnight she brought me a t-shirt, shorts, paper scrubs, toiletries and other things. This lady did not have to do this, she said she buys things at Sams...such little things but it meant so much to me...when you don't have a toothbrush, it really does mean a whole lot. Paul is on his way now to bring me some stuff, to include the airmattress which is a Godsend in these times. There are two nurse students sitting with Gracie so I could run down to do this update. I must get back upstairs now. Will update when I can. UPDATE: 11-1-06 I have just received a call from Julie she was on her back to Vanderbilt with Gracie. They doing some tests for one thing and in the process found something else and called her in route and asked her to get Gracie back as quickly as possible. It is something called Tneumatosis Intestinosis. That's all Julie really knew when she called other than it is a 3 out of 10 mortality rate. This is very serious and she doesn't know just what the treatment will be, possibly surgery. Please life Gracie up in prayer for healing and we do praise God that they found this. I will update you as soon I know anything new. UPDATE: 10-20-06 The test that Vanderbilt did on Gracie's stool when we were there on Thursday tested positive for C. Diff (clostridium difficile) so they will be putting her on an antibiotic for 14 days. This can cause stomach cramps so the liver transplant coordinator is checking to see if there is anything we can give her to help ease her pain. I will be going to get the antibiotic shortly, so I can get it going for her. They said after taking it for 24-48 hours she should get a lot of relief. UPDATE: 10-18-06 Gracie had her appt. back down at Vanderbilt today. The results from the allergy blood test was that she's not allergic to the things they tested her for, but the Dr. said that being immunosuppressed can cause that result to be inaccurate. The one test she was running on her that was suppose to have gotten processed last Thursday and didn't for whatever reason wont get run until tomorrow now (cause it's only done on Thursdays). The Dr. said she is real curious to see that result because it can cause diarrhea and throwing up. I asked if it's positive, how do you treat it, she said first thing would be to lower her anti-rejection medication. For now she wants to keep her on the steroids and on the new formula, she will see her again in two weeks then two weeks after that she will scope her again (the date to re scope her last time got put off due to her getting hospitalized). She did give me the okay to give Gracie cheese puffs although she said the allergy Dr. would probably frown at that, but it's the one thing Gracie LOVES to eat! So once we were home and I gave her the cheese puffs her eyes lite up and she smiled! The nice thing about when Gracie has these early appts in Nashville is, I can see the kids off to school then be back before they get home, so it's as if I was home all day. Please continue the prayers for her problem to reveal itself to the Dr's so a solution can be found. UPDATE: 10-16-06 Yesterday Paul said as he and Gracie left the hospital she kept smiling the biggest smile as if to say, "Yah. we're going home!" She has been having a blast on the floor playing...still working on crawling...getting a little faster. She has pretty much mastered going from lying down to sitting up. Her little world is opening up to her with these new skills! She has had no throwing up, aside from a couple tiny spit-ups, and very little diarrhea! Keep praying! The Galloways were at our church this morning, as always I get such a blessing listening to them! UPDATE: 10-14-06 Gracie will be getting discharged shortly, and Paul will be bringing her home. A couple of her labs were off a little but their still letting her come home. She will have an appt. back down at Vanderbilt on Wed. Hopefully we will get those allergy test results back soon. UPDATE: 10-13-06 Gracie seems to be doing quite well. She had a fairly good day yesterday, she did not have any poopy diapers and no throwing up. The Dr. this morning said depending on how she does today will depend on if she gets to go home tomorrow or not. This morning she started having diareah again oncew the Dr. left...so not sure if that will cause her to stay past tomorrow or not. We're real anxious to get those tests back that will tell us about the food allergy...this could be a somewhat easy fix, espesially now that she's mostly tube fed...however it could be challenging for when she begins to explore more foods orally. With God's help though we can master what we're given. Just pray for our patients through it all. Paul is at the event now that Gracie would have attended had she not been in the hospital. Paul will stay with Gracie and the other children and I are going to do some things in Nashville today (fun stuff) then head home. The Galloways will be at our church (Prospect Baptist, in Loudon) this Sun. at 10:30. tHE CHILDREN and I will attend. I get such a blessing out of them. UPDATE: 10-12-06 Gracie had a fairly good day yesterday, she didn't throw up at all, only a small spit up last night. The diarrhea was better as well. Today she's been in a really good mood, so far so good on no throwing up, and very minimal diarrhea. They stopped her IV fluids late this morning, but still has the IV in. Her GI Dr. said that if she's still in the hospital on Monday then she will scope her again then. Her prograf level yesterday was much better, they have resumed her anti-rejection medication but the dose is now half as much as before. For now we have been advised to cut out all dairy, soy and eggs in her diet, although she takes very little in by mouth they said if you have an allergy even just one bite can make a difference! The nutritionist is suppose to come by today so we could talk about what she can't have. Please continue those prayers and I'll update as I know more. UPDATE: 10-10-06 Gracie was actually laughing a bit this morning, but shortly after started having her pain, fighting episode that lasted about 30-45 minutes. They had to take the two IV's that were in and relocate one of them because one wasn't working anymore and one was beginning to bleed and was in a bad spot (in her foot), the first attempt did not work, but the second time they finally got it to work. She's finally resting now so I thought I'd take a quick walk and also update her site. They want to change her formula, and they have put a request in for allergy testing. The TN donor services event is coming up Fri. morning, I hope she will be able to attend and not still here in the hospital. Keep praying! They changed Gracie's formula...but the first feeding of it...she threw all but a half ounce of it up soon after the feeding was over, and it was only half strength (half formula / half pedealyt). The second feeding of it will be here shortly. They want me to hold off on giving her the prograf (anti-rejection medication) because her level in her bloodstream is very high. There was two allergy doctor's that came in today and we talked extensively about Gracie. They are ordering her bloodwork to check for food allergies, but they take 7-10 days to get back, depending on those results will depend on if they do the skin prick allergy testing or not, if they do this it will be an outpatient thing, as they don't do it while they are in the hospital. They will also recheck her prograf level in the morning. UPDATE: 10-9-06 Gracie is acting and looking much better today, however she's still having boughts where she acts like she in alot of pain. The labs that were done this morning were for the most part in normal range, there are a couple that were a little on the low end, but the nurse said this was normal due to her throwing up and diarrhea. She is napping now which gave me the opportunity to come get on the computer to do an update. Please continue your prayers that she gets stronger, & feeling back to normal...she did smile at me this morning so my old Gracie is trying to come back out. 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. These are pictures taken during our visit with Gracie before her surgery on 8/31/05. 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