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. Article on Gracie titled "Mary's Baby" These are pictures taken during our visit with Gracie before her surgery on 8/31/05. Current Page Page One UPDATE: 12-16-05 Gracie is recovering from her croup...she's much better than she was when I took her to the ER. I had thought she'd be well enough to go to therapy yesterday but she wasn't so hopefully she'll be good as new next week.. Hope everyone has a very Merry Christmas and a Happy New Year! UPDATE: 12-12-05 I had to take Gracie to the ER this morning. Although she had a fever her ammonia level was great, however she has croup, so pray for our little princess, she's not feeling so well. I have a humidifier going in her room, hopefully that will help. UPDATE: 12-3-05 Gracie did really well with the sedation on Wed. they let me stay with her until she went to sleep then I had to step out. As she was going to sleep I said go night night, then just before she went to sleep she managed a little smile. She's always smiling...so happy. She woke up in a good mood too. Thanks for the continued prayers. UPDATE: 11-23-05 I've been getting so excited...Gracie is bearing more and more weight on her legs! Last night Paul stood her up, then leaned her against his legs as he was standing right behind her...she stood like such a big girl! She looks so much older standing up. At therapy they have ordered her some leg braces to help aid her in standing, once they come in they will start putting her in something they call a stander or something like that. I can't wait till my baby girl can stand all by herself...and eventually to walk! It will come to pass that Gracie will do all these things. We're already thanking God! Oh praise be to God!!! UPDATE: 11-21-05 UPDATE: 11-19-05 On Nov. 30th Gracie will be sedated and have ultrasound done on her neck, per Philadelphia's request. They thought it would just be better to know where they can access Gracie prior to going into the OR for her transplant. They will use her port but will need additional access. She has done well with being put to sleep in the past so we pray it will go as smoothly this time as well. UPDATE: 11-10-05 I took Gracie to the Dr. this morning, as she was coughing a wheezing a bit, turns out she has an ear infection, so she's now on an antibiotic for that and also medicine for the wheezing. As I've said before God sees the big picture...it was best she didn't get the transplant this go around, as all this was brewing. UPDATE: 11-7-05 The third call was another no go. Before Paul & Gracie left another offer came up but that liver also was a no go. Paul asked the surgeon how common this is (the issues we've been running into) she said very uncommon and the problem with the liver from the other call where there was an extra vein is next to unheard of. So Gracie has now had four livers that could not work for her. When I spoke to Paul this morning as they were on the way to the airport he said it was probably best as Gracie has developed a bad cough. We know God is in charge, but we need to be lifted up in prayer as well as Gracie. You know for all we know God plans on healing Gracie without a new liver. UPDATE: 11-6-05 I have just received a phone call from Julie. Gracie is once again on her way to Philadelphia for a liver transplant. Please be in prayer for safe travels for her and her parents and that this liver will be a perfect organ for Gracie. I will update you as I hear more. Thank you and God Bless, Elizabeth UPDATE: 11-4-05 I had to take Gracie yesterday to the surgeon...the one that put her G-tube (feeding tube) in. It had been causing irritation and drainage, turns out it had gotten too small for her. The same size had been in her since he put it in when she was only a couple weeks old. She did fine getting it changed out. She's doing well with her therapies. The only thing is, not with the speech because she just refuses to drink at all, and she wont eat much baby food either. I can't wait till after her transplant when all that changes. UPDATE: 11-2-05 I'm so sorry I haven't updated before now. Once again the liver was unable to be placed in Gracie. We have began to get a bit discouraged, but then we are reminded, God is in charge. He can see the big picture where we can't. Maybe he saw that these last two livers would have caused complications, so he made obvious reasons for them not to be placed in her.Amen! Please continue to pray for her, and for us as well. UPDATE: 10-28-05 Julie just called and Gracie is on her way to Philadelphia for a liver transplant. If all goes well she will be in surgery at 5:00PM Eastern time. Please keep them in special prayer as they travel and for Gracie that all will go well with this transplant. God Bless, Elizabeth UPDATE: 10-17-05 I took Gracie to the doctor yesterday, she has another full blown UTI. This is very frustrating since she had the deflux procedure done on both sides to correct the reflux and therefore preventing these infections. The pediatrician put her back on antibiotics and I'm to call the urologist on Monday. Please pray this problem resolves itself, we really can't be having her sick in anyway, so when the call comes she will be able to get the transplant. UPDATE: 10-6-05 This is a picture of Gracie's first birthday party. A big one year old! The golf tournament for Gracie was really good, and we couldn't have asked for a prettier day. Gracie even enjoyed taking a ride on the golf cart as she began to get sleepy. This picture is of most of the golfers. UPDATE: 9-27-05 Today is Gracie's 1st birthday! Amen! We celebrated Gracie's birthday on Saturday, and what a celebration it was. We would like to thank all who attended, all who could not attend but were there in thought, and gifts that were given. The following poem was wrote by Brittany (Gracie's sister) for Gracie's birthday.                                            GRACIE Gracie our shining star you are so young yet what a miracle you are. You've been with us a year now but times have fast flown by. We're thankful you are here with us. Our little miracle sent from God above. UPDATE: 9-20-05 Our precious miracle Gracie will be a big one year old on Sept. 27th, however we will be celebrating it on the 24th. Oh what a celebration! God is so good! Just to think it looked as if she wouldn't see her 1 week birthday, she's now going to be a whole year old! Praise be to God! UPDATE: 9-13-05 The "Baby Gracie" benefit golf tournament at Avalon presenting sponsor is Dixie Roofing, Inc. They are based out of Lafollette. We would like to thank this very generous company for being the presenting sponsor. The deadline for registration is quickly aproaching, which is Sept. 19th, however if you don't get it in by that date we will still accept late registrations we just want to get a feel for how many people to prepare for, we will allow for extra people, in case of late registrations. Lunch will be served prior to 1:00 shotgun start. Baby Gracie will make an appearance during lunch! Hope to see you there. UPDATE: 9-9-05 Gracie seems to have a bit of a cold or allergies or something, pray she gets over it soon, because any little thing going on, if we were to get the call for her transplant, they wouldn't be able to do it. She's still happy though. You know on days I might not be in such a good mood, one look at her changes that! She is always such a happy baby, even after all she's been through. UPDATE: 9-1-05 NOTE: We had a most wonderful visit with Julie and her husband. They are both very precious and loving parents. I have some pictures to post but haven't downloaded them yet from my camera. I will try to get them posted soon...Elizabeth Gracie's other deflux procedure went really well yesterday. She seemed a bit more fussing coming out of anesthesia this time though. Once we were at home she had some blood in her diaper and even a small blood clot in which I was concerned about, so I called the doctor, he said it was fine as long as the clots were not big. She's done fine since and hasn't had anymore. We had a wonderful visit yesterday with Elizabeth & Don (their the ones that do Gracie's web site, with Children of the Promise), they drove over an hour to meet us at the hospital. They sat with us through it all. They are really good, christian people. Please pray for them and their ministry. UPDATE: 8-26-05 The procedure to correct the kidney reflux on the other side is Wed. Aug. 31st around lunch time. Please keep her in your prayers. UPDATE: 8-23-05 Gracie had the VCUG test done yesterday. The doctor's office called today to say the procedure has in fact corrected the reflux, however she now has reflux on the other side! So she will have to have the procedure repeated to correct the other side! Pray for her. This poor little baby has been through so much in her little life. Although she's been through so much, she continues to be such a happy baby, always smiling. UPDATE: 8-22-05 We will be having The "Baby Gracie" benefit golf tournament at Avalon on Oct. 3rd. Entry fee is $125 per player and includes golf cart, driving range, a great lunch, golf shirt goody bag, plus 1st, 2nd, & 3rd place prizes. Closest to the pin winners, longest drive winners, straightest drive winners. For a registration form contact Paul at (865)389-1905 or e-mail me I can e-mail one to you. Deadline to turn in your registration form is Sept. 19th. We are also still taking sponsors at this time, contact Paul for more info. on that. UPDATE: 8-11-05 Gracie saw Dr. Riden today. He did an ultrasound and saw that the stuff he injected to correct the bladder reflux was in place. To be double certain that it's working though requires him to do that test again. So in a couple weeks he'll be doing the catheter, filling her bladder and doing the ultrasound at the same time to make sure no reflux is present. Gracie is doing really well. She's now wearing a size 3. Yes that's right a size 3! She's not even a year old yet! She looks really good though, and is such a happy baby. UPDATE: 8-2-05 The liver transplant coordinator said that they had been wondering why Gracie hasn't gotten an offer for another liver yet, so they called to check, turns out they have had several in the last week or two but they were of poor quality. So we just need to pray that a good quality liver comes along for Gracie soon. Gracie's therapy sessions are going well. She's beginning to do some sitting, although it's hard work and she doesn't sit all the way up, she's improving, and that's what counts. We've actually witnessed her bearing a little weight on her legs, although only for a few seconds, once again it's an improvement! She got a bath chair recently too, and that makes giving her a bath so much nicer, not only for her but for me as well. UPDATE: 7-29-05 Gracie 9  1/2 months old UPDATE: 7-15-05 There was some really wonderful people that came in and completely redid Gracie's room! It's like something out of a magazine! It's the most beautiful room I've ever saw! I love it, we love it, Gracie loves it! I can't name everyone because I don't know everyone's name but there were about 30 people all together, they did in only a days time! Oh God just keeps blessing us, and God will bless those who had a part in her wonderful room! We got the okay from Gracie's doctor to take her to church! So we all went for the first time two weeks ago! It felt SO good! The doctor said it would be okay as long as Gracie was kept on the one side of the nursery to herself. Our church nursery has a separate area that is divided by a half wall and half door. Things as simple as going to church we often take advantage of, until it's taken away. You see Paul & I have been taking turns going to church since Gracie couldn't go, now we both can go! Oh how good it feels! Of course we'll be back to taking turns for a while after Gracie's transplant, but after sometime we should be able to resume taking her. UPDATE: 7-7-05 Gracie had the surgery this morning, all went really well. We had to get up at 4 AM. then be there by 5:30, he wants to follow up with her in one month unless we're in Philadelphia. UPDATE: 6-30-05 We saw the urologist today, the procedure is scheduled for next Thursday. She'll have to be there at 7 then it will take place at 9. She'll have to be put to sleep but the procedure only takes about 15-20 minutes to do, then she'll be in recovery a couple hours. Pray all goes well, and this corrects the reflux problem there. UPDATE: 6-27-05 The Galloways benefit singing last night raised over $2000 for Gracie. The singing was such a blessing! If you have never been to a Galloways singing, your missing out, cause they are awesome and on fire for God! We owe a HUGE THANK YOU to The Galloways for being so thoughtful to drive all the way here to sing for Gracie's cause. Gracie's pediatrician called this morning. He said Gracie has a grade 2 reflux (kidney) and has set her up an appt. with a urologist for Wed. afternoon. He said that more than likely the doctors up in Philadelphia are going to want to have this corrected prior to transplant because of the increased risk of infection, so for now she's being put on an antibiotic then on Wed. we'll talk about doing the procedure to correct this. Please pray for this precious child she's been through so much. UPDATE: 6-24-05 Gracie had her VCUG test done to check to see if she has that kidney reflux. She does! I haven't spoke with the doctor yet, but the man that did the test said that 80% of the time it goes away on it's on the other 20% of the time it requires surgery to correct it. He said they usually repeat the test in a year. The doctor that ordered the test should have the results by Mon. so I'll find more out then. I'm so thankful for such wonderful doctors God has provided to care for Gracie. So, please pray that this resolves on its own. UPDATE: 6-20-05 Paul & I have SO many people to thank, we've neglected to get appropriate thank you cards out, please forgive us. There's way too many people to mention by name, but you know who you are, and so does God. So a very heartfelt THANK YOU, and may God bless you all! UPDATE: 6-14-05 Gracie 8 months old UPDATE: 6-10-05 I took Gracie to the pediatrician who rechecked her urine, that urine did not grow anything so looks like the antibiotic is working well. He's a bit concerned that she has gotten a UTI so young. Sometimes there can be a problem with the kidneys so on June 24th she'll have a VCUG (Voiding Cystourethrogram) at Children's Hospital. Pray that goes well, and there are no problems there. Her throwing up has improved drastically, so my prayer is another day or two of the increased Zantac she'll be doing NO more throwing up. This precious child has been through so much in less than a year than most of us go through in a lifetime. UPDATE: 6-7-05 Gracie began running a fever yesterday afternoon, it was 102.9 rectal, so I called the Dr. who said take her to the ER. They of course checked her ammonia level, which turned out to be fine, they did an x-ray which also turned out fine, they checked her urine out which they think she may have a urinary tract infection so they put her on an antibiotic to treat that, also one of her ears looked a little red. The Dr. wanted her back in today to recheck the ammonia level, which was for the first time ever low, but the Dr. said everything was okay as long as she didn't begin to act differently. She's been doing a lot of spitting up, or really I should call it throwing up, so that's a concern, so the Dr. has increased her zantac, in hopes that will improve. She's such a little trooper. Please pray that these things resolve quickly so if we get another call, she'll be able to go, cause if she's sick she wont be able to have the transplant. UPDATE: 6-6-05 Well, Gracie is back home now. Turned out there was some problems with the arteries and veins and such of the donor liver, if they attempted to separate it into two sections there would have been a high chance of clotting, or other complications, so instead the entire liver went to an adult. I guess we're looking at this in a positive note...it was a good practice run. Please continue to remember that family that lost the 17 year old. UPDATE: 6-5-05 Update: 8:15PM Well, Gracie is back home now. Turned out there was some problems with the arteries and veins and such of the donor liver, if they attempted to separate it into two sections there would have been a high chance of clotting, or other complications, so instead the entire liver went to an adult. I guess we're looking at this in a positive note...it was a good practice run. Please continue to remember that family that lost the 17 year old. Update: 6:30PM I just heard from the team "spokeswoman" that after Paul and Gracie arrived in Philadelphia the dr's determined that the liver wasn't viable for transplant. Something about the arteries in the wrong place. I know this is a blow to their spirits and they will need much prayer and support. Wow! What an update I have today...First the speech this morning went really well! The second HUGE news is...Paul & Gracie just arrived via the chartered flight at Philadelphia because we got a call today that they had a donor for Gracie, however it's not for sure it will be a match, they know the blood type and all is a match the question is wether it will be the right size, Gracie will get the left lobe as this is the smaller size if it will fit. They are opening the donor at 11 PM. EST if it's a good fit then they will begin the transplant at 1 AM. EST. The donor is a 17 year old so please remember this family in prayer as I'm sure their going through a very hard time right now. Please pray that it's a good fit and things go super with the surgery and in about a month or two Gracie will be good as new! UPDATE: 6-4-05 Update: 9PM We just got the call that they have a liver en route to the hospital where Gracie will have her transplant and that they are on their way to the airport to go to Pennsylvania for the transplant. Please keep this little miracle in your prayers. I just heard from the transplant coordinator today. Gracie has now moved up to the first spot on the list! Please everyone continue to pray for our precious little girl, in all areas. God has such a big plan for our miracle baby! Amen! I will be going tomorrow to give that speech about Gracie and how God has blessed us through her, I pray he'll give me the right words to say. UPDATE: 5-23-05 There will be a benefit singing for Gracie At our church, featuring, The Galloways... Prospect Baptist Church in Loudon on Sunday June 26th at 6:00 PM. Hope to see you there. UPDATE: 5-10-05 Benefit Pictures: UPDATE: 5-9-05 The benefit ride on Sat was a complete success! Thanks to everyone's hard work in planning this big event. It was an emotional event to see so many people come out to support our little girl, some of whom we had never met, nor did they know anyone of us there. Complete strangers coming out just for Gracie. God gave us a beautiful day too, I said he made it that way just for Gracie. We know there were people there without the Lord, so we planted a seed, in hopes that they too would find the Lord. UPDATE: 5-5-05 Just a reminder that Gracie's benefit will be this Sat. (May 7th) Registration starts at 9 AM. and the bikes leave out at 10:30. There will be food, door prizes and live music. The weather is suppose to be beautiful. So everyone come out and join us! If you need directions call (865)389-1905 UPDATE: 4-27-05 Picture of Gracie...6 months. UPDATE: 4-26-05 Today or tomorrow there will be two billboards put up. One will be At Dixie Lee near Subway, the other one will be on Kingston Pike between Concord and Lovell Rd. On Sat. April 30th Paul, Gracie & I will be on channel 10 at 8:00 AM.! So if you can be sure to watch. Gracie had her appt. with the doctor over therapy. She wants to reintroduce occupational and speech therapy. She will begin doing the inpatient therapy again twice a week. So basically when she goes she'll be there all day long. The Dr. feels like at this point all of Gracie's problems are sensory, and that we need to take care of it now, early on. I expect this therapy will start next week. So pray that therapy will go well, and Gracie will begin to improve on the areas she's behind in. UPDATE: 4-17-05 The rummage / bake sale was a big success! We raised over $900! Thanks to everyone who helped and donated. My mom even made a sign and went down to a nearby busy intersection to draw people to the sale, which I believe is why today we made more money than yesterday! Because of all these wonderful people we are able to start building Gracie's fund. THANK YOU! AND MAY GOD BLESS YOU! UPDATE: 4-13-05 There will be a benefit rummage sale Fri. & Sat. April 15th & 16th From 8 AM till ? It will be at Cedar Bluff Baptist Church fellowship hall, which is on the corner of Cedar Bluff Rd. & Dutchtown Rd. It's up just a short distance from Cedar Bluff. There will be a little bit of everything. We will also be doing a bake sale on both days and hotdogs on Sat. UPDATE: 4-12-05 Gracie's baby dedication and Andrea singing Gracie's song (Saving Grace) UPDATE: 4-10-05 Today was the baby dedication and oh what an emotional ceremony it was. Andrea sang Gracie's song (Saving Grace) just awesome. We are so very thankful for her doing that for us. Gracie was so cute in her little yellow dress and frilly socks and of course a bow in her hair. As soon as we get some pictures of the ceremony I'll be sure to post one or two. UPDATE: 4-8-05 I spoke with the liver transplant coordinator today. Gracie is the second on the list at CHOP (children's hospital of Philadelphia)! So we could basically get a phone call anytime! She said we needed to have bags packed and ready to go for when we get the call. Paul & I need to take a practice run to the airport to make sure we know exsactly how to get there. More than likely Paul & Gracie will fly and I'll drive. They have ordered an EKG for Gracie, so we will be getting that done soon. I guess it's something they need prior to the transplantation. Please pray that Gracie has no illness, fever or anything leading up to the call, because if she has they'll have to go to the next person on the list. I have now been asked to speak at a big meeting of my MOPS (Mother's of preschoolers) group. This is where the church I go to for the meetings is hosting all the MOPS groups. This will be a much larger group than my sister's group was, but of course I gladly accepted, how could I turn down another offer to share such an incredible story as Gracie's... well I just can't. So once again I'll get to talk about how good our awesome God is and what a healer he is, and what an incredible miracle he has done in our lil Gracie's life! UPDATE: 3-28-05 New Picture... UPDATE: 3-26-05 There will be a baby dedication at our church Sun. April 10th. We will be dedicating Gracie. We know this will be a very emotional ceremony, as we're so lucky to have our little precious girl in our lives. We are hoping to have "Gracie's song" sung on that morning. Saving Grace by The Galloways. We have always thought we'd love to have that song sang the first time we bring Gracie to church. So this day will be her very first day in church. I'm going to dress her in the cutest dress ever! UPDATE: 3-20-05 This picture was taken at 5 1/2 months old. This is also the picture that will be in the magazine article she will be featured in! There will be a "Benefit Ride" for Gracie on May 7th at the Loudon High school, all proceeds go to benefit Gracie. Registration starts at 9 AM. and the first bike out will be at 10:30 AM. $15 per bike. Please NO ALCOLHOL! There will be a Bar-B-Q meal plus door prizes $5 per ticket. And live music. 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! Contact info. Paul (865)389-1905 or Patrick (865)567-4527 UPDATE: 3-19-05 Gracie is now on the liver transplant list! So now we wait! Our prayer at this point is that Gracie remain stable leading up to the transplant and that everything go smoothly, from the getting her there till well forever. I know God has been, is and will be with her through it all. The article that will be in the magazine Children's Hospital's TODAY sounds really good and the pictures the photographer took are just too cute, the one their using for the article she has the biggest smile, it's just priceless. I was asked to speak at my sister, Laura's church recently for the women's group that meets once a month, although I am not a speaker I was willing to accept the invitation because I love sharing Gracie's awesome story. So I went this past week, and spoke. I thank God for his miracles! I will be posting soon on a benefit motorcycle run that is set for May 7th at Loudon High School to raise money for Gracie. UPDATE: 3-10-05 The ins. has approved Gracie's transplant! So when she goes to clinic next week she'll be having extra labs drawn that are needed for the transplant process. Some are needed just to put her on the list while others are for the surgery itself. I hope her port gives blood okay since their going to need the blood they normally draw plus all the extra blood for the transplant process. Often for whatever reason they have a hard time getting blood from her, so hopefully it will give with no problem. She got her picture taken by a photographer from Children's Hospital for the magazine she'll be in called Children's Hospitals TODAY. This publication goes to all of the Children's Hospital's and even to some government officials! We're having to get records from the surgeon that put Gracie's Mic-Key button (feeding tube) and port a cath in and who put in the broviac and some other things while she was in the PICU, because the surgeons would like to know if they'll be able to gain access these areas during the transplant. Several people from our church is going to have a meeting tonight to discuss fundraising ideas. We are so grateful to them for stepping up and taking action in helping us with this. The youth leader has even talked about the youth doing things to help raise money as well. We have a lot of really good people at our church. UPDATE: 3-4-05 Well Paul & I were on the radio yesterday for the radiothon to raise money for the Children's Hospital. It went really well. There was so much more we were wanting to say, but she was signing us off, but could see that we really wanted to thank a few people so she let us have a bit more time. We felt bad though because we later realized we failed to mention several people. I know they understand though and know we thank them all. I talked with the coordinater up at Philadelphia yesterday who said that once they get the ins. approval they will place Gracie on the list. They will then need to draw some labs, which can be done at our local Children's hospital, it's routine stuff going into a transplantation. UPDATE: 3-3-05 Some History on Gracie: Gracie Lynn Schommer Born: Sept. 27, 2004 Diagnosis: Urea cycle disorder (Citrullinemia) What is it? Citrullinemia stems from a deficiency of argininosuccinic acid synthetase. Inheritance: It is suspected that the gene defect for citruliinemia is an autosomal recessive genetic trait and is unknowingly passed down from generation to generation. This faulty gene only emerges when two carriers have children together and pass it to their offspring. Signs & Symptoms: Symptoms are hyperammonia accompanied by lack of appetite, vomiting, listlessness, seizures, and coma. Onset is usually at birth, but symptoms may not be noticeable for days or weeks. Long term effects: When left untreated, brain damage, coma, and death will occur. Treatment: Treatment may include a high-caloric, protein-restricted diet, arginine supplementation, administration of sodium benzoate and sodium phenylacetate. Dialysis may be necessary in some affected individuals. There is no cure for this except for a liver transplant, which we have decided to do for Gracie, as this would greatly improve her quality of life, and possibly give her a longer lifespan. We ask that you help us by praying for her, as that's the only reason she's still with us and is doing as well as she is. When Gracie was at her worst she had fixed pupils so they were not responding to light, and they had declared her brain dead! Her ammonia level got as high as over 500 when normal is between 9-33. She was on dialysis, she had blood transfusions, plasma, she was on life support, and had lines going in and out of her little body all over, but praise God he answered our prayers and brought our little girl through it all! She's far from brain dead and is improving daily. She currently is receiving physical therapy, and they feel like she will catch up in the areas she's behind. After getting the liver transplant Gracie can lead a normal life, where now she has to be on a very strict diet and has to be isolated cause if she gets sick that in itself can cause the ammonia to build up which would put her back in the hospital, and with each high ammonia episode more brain damage tends to occur, our wish is to do the liver transplant as soon as possible to preserve what is still there mentally. The Dr. said if we just continue to treat her condition there could easily come a time where she might stop responding to the medication, then it would be an emergency transplant, and if you wait till that point the success rate is much lower where going in well, and stable the success rate is 95%. Gracie's transplant will take place in Philadelphia, we imagine sometime this year. You may keep updated by going to Gracie's website. If you would like to help with Gracie's expenses, please send your gifts to Children of the Promise, 405 Shady Pine Lane, Newcomb, TN 37819 and mark it for Gracie S. or you may deposit at one of the banks below: For anyone who wishes to contribute to Gracie's cause you can do so at First National Bank (East Tn.) Below are the address and phone numbers of the banks you can deposit into, you just need to give Gracie's name (Gracie Schommer) *200 East Broadway Lenoir City, Tn. 37771 (865)986-3546 *16239 Hwy. 70E (DixieLee) Lenoir City, Tn. 37772 (865) 988-2160 *5235 Hwy. 321N. (Eaton Crossroads) Lenoir City, Tn. 37771 (865)988-2180 *10514 Kingston Pike (West Knox.) Knox. Tn. 37922 (865)988-2210 *1708 West Broadway Maryville, Tn. 37801 (865) 982-9191 *817 Mulberry St. Loudon, Tn. 37774 (865)988-2220 *290 Village Square (Tellico Village) Loudon, Tn. 37774 (865)458-2824 UPDATE: 3-2-05 We are safely back home from our trip to Philadelphia. Gracie's appointments went really well. We have to work out some details on how she will get there when a donor liver is available due to the distance involved. It would have to be a flight. So our best bet is to find a pilot who is willing to donate his time and plane to fly her there. The doctors said if all goes well (and it will) Gracie would be in the hospital 2-3 weeks then we would remain local for another week, then she would make weekly visits to Vanderbilt for follow up then once a month for a year to a year and a half she would go back up to Philadelphia. It will be a lot of time and driving for the first 1 - 1 1/2 years, but it will all be worth it. Gracie would initially be on a lot of meds (about 7) but by the 1 - 1 1/2 year mark she would be down to only 2. She could be a "normal" child after the initial recovery time (about a month or so), she could go to church, go to play with other children, go shopping with mommy! Our God is so good! I know my daughter will live to have the most awesome testimony! Please continue to pray for our little precious one. We will begin doing some fundraising soon, so pray for us as we do this. UPDATED: 2-26-05 Well, tomorrow is the big day! We head up to Philadelphia! We're going to leave out about 6 AM. It's about a 10-11 hour drive but with the stopped for Gracie to feed her, medicate her & change her I figure about 13 hours or so. Once we return we'll probably begin doing some fundraising. I thought I would go ahead and open Gracie a bank acct. at our bank (First National), for those who wish to contribute straight into her acct. The bank said that would be no problem, whoever wishes to contribute will just come in and give Gracie's name, but they would not give out her acct. #. I know everything will be fine and those dreams people have had of Gracie being older and perfectly fine will come to pass, cause I KNOW Gracie will be perfectly fine when this is all over. We're so very thankful to God for all that he's done, is doing and will do in our little Gracie's life! Amen! UPDATE: 2-22-05 We got good news from the ins. co. today! They approved Gracie's appt. at CHOP (Children's Hospital of Philadelphia) on Feb 28th. So we'll be heading there early Sun. 27th, then depending on how late we're at the appointments' we may not head back till the next day (Mar. 1st). Please remember us in prayer as we travel. Gracie's cold is just about gone, so she's feeling much better. Her Mic-Key button (feeding tube) was leaking around the base quite a bit and causing her skin to get all irritated so Paul & I changed it yesterday, it was the first time we changed it ourselves, it went really well. Paul actually did the "hard" work, I just assisted. He's such a good dad! The new button is doing very well...no leaks. We haven't heard anything back from the ins. co. so Paul is going to call them back today. I forgot to mention in my earlier update, that I have been asked to speak during our upcoming Children's Miracle Network Telethon! I'm very excited and honored to be asked to do this. I accepted the offer but I know I'll be nervous, cause it's live! For those who are local it will be on radio station 102 at 5 PM. on Thursday Mar. 3rd. It will be held at the West Town Mall outside of Profit's. They asked that I bring Gracie, but I told them with her condition we can only get her out to go to the Dr. or to therapy, so they asked me to bring pictures. UPDATE: 2-16-05 Gracie had her labs repeated yesterday which everything was perfect! Amen! The Dr. also wanted to see her. He seems to think she just has a bad cold that needs to run its course. Since he saw her yesterday he said she wont have to come to clinic tomorrow, so that will save a trip. We are beginning to have a lot of heartache with the insurance co. now, so please pray for that situation that it clears itself up...quickly! UPDATE: 2-15-04 Well, we took Gracie down to Vanderbilt today. It was a very long time spent there and a very long day. We left our house at 7 am this morning and didn't get back till almost 8 PM. Gracie's liver ultrasound went well, she actually fell asleep while they were doing it. They did the ultrasound for like an hour or longer. The result from that was that her liver ultrasound overall was good, and it showed mild enlargement. The biopsy was probably harder on me than her. They put some numbing cream on first, then used a needle to numb it real good, then took the small biopsy. They made us step out during this procedure. Gracie has had a cold the past week, that seems to be getting worse. While on our way to Nashville, she didn't have a fever but it was close to being one. Once we got there I retook it and it was then a fever, so the Dr. did blood work on her as well, cause it's very important to keep an eye on her blood when she gets sick with a fever. She did a rush on the ammonia while we waited it came back 50, which is higher than normal but not high enough to worry about. Once we got back home however she had called to say her chloride was up and her bicarbonates were down (not sure on the spelling of that). So the labs would need to be repeated tonight or first thing in the morning. So I called her specialist here in Knox. and he said continue giving her Tylenol and to give her pedialyte in with her formula in the pump tonight then be up there first thing in the morning to do labs. Please pray everything is just fine tomorrow. She had such a long rough day today. I don't wont her going through much tomorrow. Pray that her port gives blood well in the morning too, because today it didn't do well at all. They had to poke her twice, plus both times worked the needle around and worked on it to give the blood they needed. Another prayer is the insurance co. The Dr. said they have put a hold on the visit at Philadelphia at the end of the month. I'm calling them tomorrow and hopefully get things worked out. We hope to get some fundraising started soon as well, pray that everything with that goes well. UPDATE: 2-11-05 Gracie is 4 1/2 months in these pictures'. She has her "Daddy's little girl" outfit on. UPDATE: 2-8-05 Gracie had a very intense hearing test today at U.T. medical center, and the Dr. said it looked great! I was pretty sure it was though cause she acts like she hears well. The Dr. down at Vanderbilt wanted to have it done, since what all she went through while in the hospital the first time. It wont be much longer now till we'll be heading back down there (to Vanderbilt) to get that skin biopsy and liver ultrasound done. UPDATE: 2-4-05 The liver transplant coordinator from Philadelphia called today. Gracie has an appt. up there at CHOP (Children's hospital of Philadelphia) on Feb. 28th. So we will travel up there early Sun. cause it's about a 10-11 hour drive. We will be meeting with two surgeons, the liver transplant coordinator, and the liver transplant social worker. It will be a very busy day. Hopefully we'll be able to stay at their Ronald McDonald house, cause it only cost $15 per night, and the fully stocked kitchen is free, so that would help ease the cost of the trip. We really need to get our fundraising started soon. UPDATE: 2-1-05 New Update: I spoke with the doctor's office from Vanderbilt this morning. Gracie's skin biopsy has been scheduled for the morning of Feb. 14th. The Dr. is going to go ahead and do the liver ultrasound while we're there, so I'll have to cancel the one that was scheduled here in Knoxville. It was scheduled for the same day, so now it will be nice to get both things done while we're in Nashville. Gracie's therapy has been coming along very well. The therapist has shown me things that I can also do with Gracie at home, as has the lady that comes to our home once a week from TIPS (Tennessee infant parent services). My main concern right now is that Gracie hasn't been doing any weight bearing on her legs. However she is beginning to do a very small amount. They said they wont get too concerned until Gracie gets to be 5 months. If she's not progressing then they'll get concerned. I spoke with Gracie's specialist the other day. It looks like insurance is going to pay to do the skin biopsy, but not to process it, and it seems that is the most expensive part of it. We had thought that UT. would be able to take the biopsy and process it, but it turns out they don't process them anymore, instead they send them down to Baylor. I spoke with the Dr. down at Vanderbilt, and she said she could do the biopsy and process it, so we've decided to take Gracie back down there for that, since it would be safer to have them process it at the same location the biopsy is taken. So I guess we'll be returning to Nashville again here real soon. The Dr. is going to get back with us, with a time to come. I pray the procedure wont be too traumatic on lil Gracie. From what her Dr. here at Children's said, they numb it first with a needle, then take the biopsy. More than likely it will be taken from her leg. UPDATE: 1-31-05 Taken Dec. 04.The individual picture I sent of Gracie she was 2 1/2 months in it, she was 3 months in the family picture. UPDATE: 1-28-05 We have decided to go with CHOP (Children's Hospital of Philadelphia) for Gracie's transplant. I spoke with the Dr. from Vanderbilt yesterday, she has been talking with the Dr. at Philadelphia about Gracie, it seems she thinks it would be best to wait till Gracie is about 10 months old, which would put us at the end of July. That would give Gracie time to grow and to put more weight on. I also talked with U.T. Genetics yesterday, they are just waiting on the supplies needed to do the biopsy on Gracie. Once the biopsy is taken, it takes like 4-6 weeks to grow. We're hoping they can get the confirmation needed this way, so as to not have to do the liver biopsy. Gracie's hearing will also be getting rechecked at U.T. Medical center in Feb. Then the liver ultrasound will be done at Children's here in Knoxville. Gracie started a new program just this week called TIPS (Tennessee infant parent services), it's more working with us to teach us how to help Gracie, like therapy and things like that. Also TEIS (Tennessee early intervention services) will be reimbursing our mileage to take Gracie to therapy, so that will come in handy. We are beginning to think about fundraising ideas to help raise money for all the transplant related expenses we will incur. The Dr. from Vanderbilt said that a social worker from Philadelphia will be contacting us to help us with fundraising. We know we have a long road ahead of us, but God will lead us right through it! I wrote a letter of thanks to the Children's hospital here in Knoxville and a lady contacted me wanting to know if they could publish the letter along with a picture of Gracie in their next publication of their magazine called, "It's about Children", of course I said, "yes". UPDATE: 1-18-05 We got wonderful news today. The first good news of the day, was that Gracie is doing so well at the inpatient therapy that she can now graduate to outpatient, for an hour once a week, for physical therapy! She doesn't even need speech or occupational therapy anymore cause she's doing so well! The second VERY big news is that her last EEG (brain scan) was NORMAL! Yes, you read correctly, it was NORMAL! Oh! God is SO good! UPDATE: 1-11-05 We went down to Vanderbilt Children's hospital in Nashville yesterday for Gracie's appt. with the specialist there. We talked in depth about the liver transplant. The Dr. said that Gracie is a good candidate. Our homework is to decide where we would want to go...either Cincinnati or Philadelphia. She said, considering Gracie's condition, she would get a letter of exemption, therefor she wouldn't have to go on a long waiting list, so therefor she would only be waiting a matter of months. The Dr. checked her over really good, did blood work, urine, measured her liver (which is larger than normal), Checked her out to see what she was capable of doing, like lifting her head, things like that. She wants to get an ultrasound of her liver, another hearing test, and also do a skin biopsy just to double confirm she actually has citrullinemia. She said we would have to have a cell phone on us at all times, so when the time comes Gracie would be medically airlifted immediately to where the transplant would take place. This is a huge step, but I know with God on our side, Gracie will be just fine. The Dr. said after the surgery, we could expect her to be in the hospital for 2-3 weeks. Please continue to pray for our precious lil Gracie. She's such a little miracle. I feel strongly that she will grow to be an old, healthy lady, an oh what a testamony she will have! To tell others what God has brought her through! Amen! UPDATE: 1-4-05 Gracie saw the neurologist yesterday, although he wasn't very positive, he said she would be retarded, although I hate that word, I prefer the word mentally handicapped or delayed. I know through God ALL things are possible! Amen! He will be doing another EEG (brain scan) on Jan 12th, then we'll see him again in several months. Gracie will be seeing a specialist (endocrinologist) down at Vanderbilt Children's hospital in Nashville on Jan 10th, We will be traveling down the evening before and hopefully staying at the Ronald McDonald house if there is a room available because her appt. is real early morning. We will be getting a lot of our questions answered about the liver transplant. From what I understand the closest place to do it is in Ohio. I had asked Gracie's specialist here what would be the best choice for her, continue to treat her or go with a liver transplant, he said definatly the transplant. My pastor had a dream with Gracie in it a while back, and in the dream Gracie was about 18, and beautiful and seemed fine. I feel like Gracie will/is living proof that God DOES do miracles, and what an awesome testimony she will have. To know that at one point they had declared her brain dead, and now she's far from that! If you didn't know she was a sick baby, you wouldn't think there was a thing wrong with her! God is good! UPDATE: 12-20-04 Gracie got to come home today! Her last ammonia check was 31. The Dr. wants her back on Tues. to recheck the level. So let's pray it stays down. He has added a couple new meds and has changed the dose on a couple of her other meds. We had to have the home health care nurse come out today because Gracie's Mic-key button was leaking from the valve, and we did'nt have any replacements. Julie UPDATE: 12-17-04 Well, Gracie's ammonia level has gone back up! When she was admitted today it was 210, then after being on the i.v. meds a couple hours it was 75, then it was 390, and last checked it was 290. The crazy thing is at an ammonia level this high she should be in a coma, but she's not, and she's acting perfectly normal. So we're now questioning, if the lab is getting acurate results. Please pray for her that her results will acuratly be low and stay low. Thank, Julie UPDATE: 12-16-04 Please pray for Gracie, when she had her blood work done today, her ammonia level is 150, which normal is between 9-30. The Dr. upped her two meds that control the ammonia, and changed her formula recipe, he wants us back to the hospital first thing in the morning to repeat it, then he wants us to stay till the results come back. Pray that it not only comes down but stays down. Thanks so much, Julie UPDATE: 12-15-04 Gracie is doing very well. She got a new feeding tube in (Mic-Key button), it's a lot different than the one she had, but we'll get use to it. Her appt. at Vanderbilt is coming up real soon (Jan 10th). Please continue to pray for oor lil girl. She'll be 3 months old the 27th, which will also be her big sisters 19th birthday! Julie UPDATE: 11-23-04 Gracie's amino acids dropped so they changed her formula recipe, then last week her ammonia went up so they changed the formula recipe again. They upped the medication dose because she's now over 12 pounds. She has an appt. with a specialist at Vanderbilt in Jan. It's looking like the best option for her would be a liver transplant, because the Dr. said as she gets older often she may not respond to the midication, and if that happened she would surely die. And each time the ammonia level goes up, often more brain damage takes place. A liver transplant is such a big thing, but I know God can lead her through that. Julie UPDATE: 11-10-04 I thought I'd give a quick update on Gracie. I haven't been able to get online much, as taking care of her consumes alot of time, but I'm certainly not complaining. She's doing so well, and we give God all the glory. She's getting her blood drawn every Wed. to check her ammonia levels, amino acids and a couple other things. Her amino acids was a little low last week so her formula recipe has changed along with a higher volume. She'll be getting her blood drawn again tomorrow. I've been a bit worried about insurance as they are not sure she'll be able to stay on it. If she didn't have insurance, we would not be able to feed and medicate her and without it she'd definatly die. So please pray that she'll always have insurance. Thanks, Julie UPDATE: 10-30-04 Gracie seems to be doing very well, since she's been home from the hospital. God has been so good. I realize that her name isn't Gracie for nothing. She is on four different medications and will definatly be on two of them for the rest of her life. She has to be fed at certain times a day, and what she doesn't take by mouth we then have to feed her via her G-tube (feeding tube), she also has a port a cath, which is like an internal ready access for an i.v. in case she needed quick medical attention. She has to be on a special formula, which has four ingredients in it. Her formula recipe comes from the pharmacy. All her meds and formula is all very expensive. Insurance and WIC are paying for it, thank God. If it wasn't for that we wouldn't be able to afford to feed her and medicate her, and without these things she would die. Gracie is truly a miracle! At one point her ammonia level was over 500, God brought that down, working through the Dr's by doing blood tranfusions, dialasis, life support, and lines running in and out of her little body everywhere imaginable, once the ammonia came down, we then had to focus our prayers on her liver, cause it was not functioning, the Dr's thought they would have to do at least three rounds of plasma just to boost her liver well after only one round it was fully functioning, she was also having seizures in the beginning, but hasn't had any since. With her ammonia being so high, there';s a great risk of brain damage, the EEGs did show abnormal, but the last one showed improvement. They will do another one on Jan 3rd. God has already made a miracle out of her, there's no reason to dought that he can heal her little brain, and make her be 100% normal. The people who have worked with her...the nurses, drs and anyone else know that there is no medical explanation for her being here, and doing as well as she is, we know the explanation, and his name is Jesus, amen! Gracie will be having, speech, occupational, and physical therapy. There is no cure for what little Gracie has, except a liver transplant, which we will consider, but that in itself has risks, even possible death. Please always remember in prayer our sweet little Gracie girl. 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