May 20th, 2010 Yeah, we're still around. Lol. Summer is almost here!! The boys are still in school. They have a couple more weeks yet. :-( I bet they are wishing they didn't miss so many snow days now!! Heehee! --I have been out since the 6th. I was planning on taking a summer class, but I didn't get the financial aid I was expecting so I guess I'll just have to enjoy my summer without school. I passed all my classes! 2 years to go!! I can take the Certified Nursing Assistant test now that I've completed my 1st semester of clinicals. I just need to get the paperwork in order. I hope to get a job sometime this summer, as bad as I hate to. ;-) --Robin graduated with his Baccalaurate (Bachelor's) in Nursing degree a couple weeks ago. We are sooo proud of him. --Levi has been awesome!! The tests he took back in March turned out good. He has to go back in a couple weeks to finish some of the tests that he couldn't take in March. His labs have all been great! Still nothing to suggest why he is so downright onery. Lol. --Also, at the end of June there will be the annual Small bowel/liver picnic at Coney Island. We get to see all the staff and doctors and many other transplant recipients from Cincinnati Children's. It is a fun time. --We have been fundraising like crazy and had success at reaching our goal. Now we just wait on the Transplant Games to roll around. I am very excited about going. --We have season tickets to the local water park and I'm sure I'll be spending every spare moment there with the boys. They have been begging to go since January. --As you can tell, we've got a busy summer. I hope you all are doing great! Talk to you when I get a minute. Remember, no news is good news!! --Laurie March 1st, 2010 I am almost ashamed to be updating after this much time has passed. Sorry guys! Nothing much going on here except snow, snow, and more snow. There has been an outbreak of cabin fever here at our house in the past few weeks. My oldest 2 have missed something like 15-16 days of school the past couple months! They'll be going all summer. -Let me try to catch you all up to all the latest news in the Goff Household. Levi has been doing great is the most important thing that you all are curious about. He goes Wednesday for some of his annual tests, then again in a month or so to finish them up. This week he has a GFR test (they put dye in through your veins {so he'll have to get an IV} and take xrays of your kidneys over a period of a couple hours to see how long it takes your kidneys to filter out the dye), he has a huge list of labwork, and some xrays of his bones to check density. It's gonna be a long day. We have to be in Cincy at 8am. -We're still planning on entering Levi in the Transplant Games. I haven't gotten very active with fundraising yet and I need to get on the ball. We have to get our goal by June. If any of you are interested in helping or have any fundraising ideas, get with me. My email is llg12480@aol.com or my cell is 606-219-7826. If you would like to make a donation for Levi, you can make out your check to Team KY/National Kidney Foundation of KY and sent it to 250 East Liberty Street, Suite 710, Louisville, KY 40202. It is tax deductible and the Tax # is 61-0673518. VERY IMPORTANT: IN ORDER FOR THE MONEY TO GO TO LEVI GOFF AND NOT AS JUST A GENERAL DONATION TO TEAM KY, YOU MUST PUT HIS NAME ON THE CHECK SOMEWHERE, FOR EXAMPLE, THE "NOTE" OR "FOR" SPACE AT THE BOTTOM. If you know anyone that may want to help, please forward this information to them. -Guess what Sunday is!! Levi's 2 year anniversary of his transplant!!!! WOW! I cannot believe it has been that long. We will probably have a simple little party at home with cake and ice cream. I have contacted the local paper and the journalist that did his last story has agreed to do an update on him next week sometime. So be watching for his cute little face. Also remember the family that lost their loved one this week. This has to be a hard time of year for them. -Some other things in the works is that Levi is on the Kentucky Circuit Court Clerk's Trust for Life page. Trust for Life Stories They are compiling donor and recipient stories from around Kentucky. Levi's the only one from our county. Also the lady from KODA (Kentucky Organ Donor Affiliates) asked me if they could use Levi's picture and story in their new brochure. I'll be sure to let you know when that comes out. I think that is very exciting. :-) -Nursing school has been good, but stressful. I started my first IV a couple weeks ago. That was exciting! There is a lot of paperwork that comes with the territory, so I have been struggling trying to get that done each week. But I am enjoying it and every day gets me closer to becoming a nurse. -Well, I know I've left out some things, but I think I've hit the most important things. Hope you all have a wonderful week. I know I say it every time, but I will try my darndest to update a little more often. God bless you all. Love ya!, -Laurie December 22nd, 2009 We made it home yesterday! Sorry I didn't update sooner. Levi was just not ready to go over the weekend. He would do fine with his feeds during the night but then of the morning he would get sick and start vomiting again. Then by afternoon he'd perk up again. He ended up getting some more fluid Saturday. Today he is pretty much back to normal now. He hasn't vomited since yesterday morning and is acting much more like himself. His stools are getting farther between and are much less like diarrhea. At the hospital he had been having bowel movements during the night, but today he didn't have one until he got up and that's the only one he's had all day. That is a good sign that the bug is finally gone. I think the bug made its rounds through the whole family. Robin's sister and her girls got sick while we were gone. I just hope it stays away from me. --Today he is just trying to make up for lost bullying time with his brothers. lol I'm glad we made it home before Christmas. That is the best Christmas present. --Speaking of Christmas presents, we adopted 2 kitties from the Lexington Humane Society on the way home last night. They are very cute. Our Kitty, KitCat, we had found over the summer snuck out last Wednesday and got backed over by Robin on his way to work. The boys took it really hard, but not as hard as Robin. They have asked for a new one. We decided to get 2 because we couldn't choose. Their names are Hannibal and Horace. Not names I would've picked out, but that was their names. They are 4 months old and have been neutered and vaccinated. This is not to replace our beloved KitCat, but hopefully it will bring the family some joy instead of so much heartache. And we gave 2 kitties a new home for Christmas. KitCat would've wanted that. We saved him and he had a good life, however, short it was and he would want us to save other kitties like we saved him. --Merry Christmas to all of you guys. Hope your holiday brings you a time of joy and love. And Happy New Year if I don't update again before then. ---- Laurie, Robin, Brandon, Jacob, Toby, and Levi December 18th, 2009 Hey guys! Hope everyone had a Happy Thanksgiving. Is everyone ready for Christmas? --Unfortunately this update is coming from the hospital (Cincinnati). Levi got dehydrated Wednesday night. The vomiting/diarrhea hit all the boys overnight. NOT a fun night to be a mommy, let me tell you. They all took turns vomiting. Levi and Toby were hit the hardest. Toby had to get fluids yesterday at the hospital and Levi did too but they brought him to Cincinnati, just because he is who he is and he needs further tests run. Still not sure what the cause is, but all of them have started feeling better. None of them have vomited since yesterday afternoon. It was only like an overnight thing. --Levi's whole sickness ordeal is a bit more complicated that the other boys. Theirs didn't start until Wednesday night. I have to back up a couple weeks to give you the entire picture on Levi. About 3 weeks ago I took Levi to the pediatrician because he had a large swollen lymph node on his neck. I also took Jacob, who ended up testing positive for Strep (something that hit all the boys and myself last week). Levi was not tested for strep, but the doc started him on an antibiotic anyway. On the last day of his antibiotic (Sunday) he broke out in a chickenpox-looking rash. We discovered at that time he had also recently been exposed to shingles (a latent form of chickenpox). [Anytime Levi is exposed to chickenpox, he has to be admitted for IV antivirals (acyclovir). He also had not had the vaccine because he cannot have live virus vaccines]. I took him Monday back to the pediatrician thinking he had for sure caught chickenpox and we'd be admitted. The doc's weren't convinced it was chickenpox because it wasn't blistered. They ruled it either a viral rash or a medication reaction from the antibiotic he just finished. However, they decided to put him on acyclovir (a med used to treat chickenpox, but orally not IV). Cincinnati agreed since he had exposure just to be safe. He started that Monday night and then had quite a bit of diarrhea overnight. Then he was still pooping like crazy Tuesday and Wednesday. Then the boys started vomiting Wednesday night. Levi started vomiting about 5am Thursday morning. --Levi and Toby, both looked awful Thursday morning. Robin took all the boys (except Levi) to After Hours to be checked. I called Cincinnati and they wanted me to take Levi to the ER to get some labs and be evaluated. They called our ER ahead of time and told them we were on our way, that Levi didn't tolerate dehydration well, and ordered labs. I am very upset with our ER! We waited 5 hours before Levi even got an IV started. They didn't check a Blood pressure until a couple of hours before we left. (We got there about 9:30am and left at 4pm.) I was talking back and forth with Cincy updating, and they had their attending call the ER and they (our Somerset ER) told him that not only did Levi have IV access, but he had received a bolus of fluid!!! Can you believe that?! I am so upset. They told us they were waiting for labs before they started an IV because they had tried twice and had no luck. Last time I checked, labs don't take 4 hours for results. The nurse said she was trying and calling different areas to get someone to start one, but she never came and told me and besides, "calling" is not "trying". We sat in that ER from 9:30 am until about 3:00 before he got an IV and fluids going. And that was only after Cincy had called them and Robin had called and complained to the house supervisor. That is totally unacceptable! You could tell by looking at the poor thing that he needed fluid. His eyes were sunken and he was lethargic. He was throwing up everything going in. They rarely came in to check on us. They did however put a urine bag on him to get a urine sample. How dumb! HE WAS DEHYDRATED, he's not going to be peeing! We finally got outta there and hit the road in the ambulance with sirens blazing all the way.(Toby had to get fluids too. His was started at around 12 and he was almost finished before Levi even had an IV. But he was in ambulatory care, not the ER) Needless to say, we are very upset with that ER!! --We are now in good hands! Levi finally got his fluid and perked up. He hasn't thrown up since we left Somerset. They held his feeds last night to be safe, but allowed him to drink small amounts. He still doesn't have much of an appetite, but has eaten a few chips, a piece of bologna, and a tater tot. He still isn't drinking much at all other than a few ice chips. They just now stopped his fluids (11pm Friday) and started his feeds back at half the home rate. If he tolerates that after a couple hours, they will bump it up to his normal rate. His labs improved and they said that if he tolerates his feeds tonight, and his labs look good in the morning, then we might be able to go home tomorrow. Yay! --Back to the rash. He still has it. It looks different now and has everyone baffled. It looks better but instead of raised bumps, it is now flat red spots. I think they have finally come to the conclusion that it is something viral and harmless. Something else strange about my little monkey is that they did a chickenpox titer (test to see if Levi had antibodies to chickenpox-to see if he has had contact with it before). He had antibodies! That means he had been exposed at some point in his life (other than this time). Who knew? I sure didn't. STRANGE. --I think that is about it, OH, WAIT, 1 more thing: -- Levi is going to play in the 2010 Transplant Games in Madison, WI in July!! We are excited. If you've never heard of the games. They are a lot like the Olympics, only for transplant recipients. We have to raise enough funds for Levi to go. Our goal is $1500 so I will probably be asking for lots of help with fundraising in the next several months. There is a site to make online donations, but it is not fully functional right now. If you wanna go there and read more about the games and see his page here is the link: http://donate.kidney.org/goto/levishawn The "SUPPORT" button doesn't go to the correct page so donations can't be made at this time. I will let you know when that's working properly. Also if you know of any businesses that would like to sponsor TEAM KENTUCKY, they can do so and the donations they make can be applied towards Levi's goal and they will receive some benefits (for example: have their name on the back of the team's official shirt). There is a minimum donation and I can get that info for you if you need it. --That's it, I think, this time. I will update maybe tomorrow after rounds when I know how the night goes. Take care everyone. Good nite.---Laurie November 2nd, 2009 Wow, I think this is a record. 2 months without an update! I am getting awful. Where to start? Well, we took a trip to Washington DC around the second week in October. We went on the boys' fall break. We spent about 5-6 days there. It was really nice. The older boys had been wanting to go since Night at the Museum 2 came out earlier this year. I think Jacob truly believes that all that stuff comes to life at night. lol. We went to Arlington, the Money Factory (aka Bureau of Engraving and Printing), the National Zoo, the National Cathedral, the Air and Space Museum, and a lot of the memorials and monuments. The weather was perfect and we all had a really good time. --Levi has been great. I can't think of anything that has come up in the last 2 months that is worth mentioning. He hasn't been back to Cincy since my last update, but he has an appointment this Thursday. I am anxious to see if he has gained any weight. He seems o have grown a bit taller. A few pair of pants that fit him a few months ago are getting short. I was beginning to think he was gonna be a shorty forever, but it seems he has hit a growth spurt. --He is still mean as ever. He is talking more an more all the time. His favorite song was Jesus Loves me, but he has found a new favorite recently. He REALLY likes the song about the monkeys jumping on the bed. He goes around singing it all the time and holding up his fingers. It is really cute. He can now show and tell you how old he is. He will hold up 2 fingers and say "two". My little boy is growing up and getting so smart. --Another BIG accomplishment we have made since we got back from DC is that we got rid of the pacifier. I think it was harder for me than him. He asked for it a few times each day for about a week and now he'll only ask for it every other day or so. I'll tell him big boys don't suck paci's and then he's fine. I should've done that a long time ago. I was the one holding him back. I didn't want to admit that he had gotten big enough to get rid of it. For so long, when he couldn't or wouldn't take a bottle or eat, that was his only comfort. I just really dreaded taking that from him. BUT I guess he was ready because it has not been bad at all. --He has learned to jump off of furniture now. Kinda scary. He has no fear! He loves to jump and do flips. His girl cousins have started gymnastics so he has picked up on doing flips and cart wheels. He does a run and flip that is quite impressive. He says, "Watch me!" --The kids has a blast Trick-or-Treating this past weekend. This was Levi's 1st Halloween at home so it was extra special for all of us. We'll be eating candy until next Halloween. There was a block party down town and there was a christian group singing. We stopped to listen awhile. Levi danced all over the place. A man standing next to me smiled and said, "I don't think he needs anymore candy tonight." I smiled back and politely informed him that Levi had only had one M & M." I thought that it was funny. Levi is that rowdy all the time. I bet that man was thinking that he'd hate to see that child hyped up on a whole bag of M & M's. Lol. --School has been keeping me busy ,that's part of the reason I haven't updated. I've been doing ok so far this semester. I turned in my application on Friday for the Nursing program. I won't know if I get in until January, though. I'm gonna be chomping at the bit until I know if I got accepted or not. Keep sending positive thoughts my way about that. --In a couple weeks Robin and I are going on a fall retreat to Gatlinburg with the young adult class at church. I am very excited but also nervous about leaving Levi all night for the first time. We will be gone 2 nights. We are leaving on a Friday evening and returning the following Sunday evening. I am looking forward to it and I am sure Levi will be fine, I just get anxious thinking about leaving him all night. --I think that's about it. You know we love you all. Thanks for checking in on us. Levi will be 20 months post transplant on the 7th. GLORY HALLELUJAH!! God has surely kept his healing hand over Levi. I thank him every day as well as the donor family. I recently sent a letter to them. I have had it written for a long time, but just hadn't gotten the nerve to send it. Well, I finally did it. I know they needed to hear how thankful we are for their choice. I hope to hear back from them, but I am just glad that I let them know how grateful we are to have our little boy here. I at least know that I have thanked them for the greatest gift of all. --I'll try to update again sometime after we go to clinic this week if they make any significant changes. God bless you all and we love ya!! ~Hugs and love~ ---Laurie September 7th, 2009 Happy Labor Day! I am taking today and trying to catch up on things. On my list of things to do was to definitely update Levi's page. Can you believe I went a whole month without updating?!! There is no August 2009 journal. I am sorry, but you can look at it as a good thing. Fewer updates just mean that we're busy leading normal lives, and that is definitely a good thing. I'll try to back up and fill you in on the latest happenings in the Goff household. --Medically, Levi is great. He had a virus or something this past week which caused him to run a fever for a couple days, but he was over it pretty quick. Jacob had it the week before and Toby had it a few days before so I knew what to expect. They just ran a fever and that's about it. I took him to the pediatrician anyway because that is pretty much protocol whenever Levi runs a fever, for whatever reason. I also called and let them know in Cincinnati. Levi got worked over. He had to get his finger pricked, his throat swabbed and worst of all they had to cath him to get a urine sample. Everything was normal except his white count was elevated. Levi's white count runs higher than a normal person, but this was just a bit higher than his normal. The doc started him on Augmentin and away we went. That was on Monday. On Wednesday, he started crying with his belly. He would hold his belly and cry "Ow'Ow'Ow..." It was pitiful. He didn't have any vomiting or diarrhea so I was beginning to panic, because he NEVER cries like that for anything. He was in pain, I could tell. So I took him back to the doc and he just ruled that he was just getting over something. I knew it had to be more than that and he just kept crying and I had to do something. So I called Cincy back and filled them in. We came to the conclusion that it was probably the Augmentin causing his stomach to be upset. They told me to stop it and give him a Tum to help settle his belly. I gave him the Tum and hooked him up to his feeds early because he hadn't eaten much that day. He took a nap and was feeling better in a few hours. I was very relieved. He had me worried. Since it was his belly, I was especially concerned, but thankfully it was just stomach upset. --He had clinic last week and they said anytime Levi runs a fever that is unexplained, he needs to be put on an antibiotic, but a shot of Rocephin would be more suitable for Levi. They were very happy with how Levi looked. He looked so good, we don't have to go back for 2 MONTHS! They asked about his eating which really hasn't changed any in the last couple months. He is now on the Pediasure instead of Elecare. He tolerates it really well, but he refuses to drink it. He'll take a couple sips and that's about it. In order to get rid of the gtube, he has to drink more of it or at least something like it. He will drink other things like kool-aid or gatorade, but doesn't have a taste for the milk. So they gave him something else to try to drink instead of koolaid and gatorade which just has simple sugars and empty calories. It is something like Perdiasure. It has vitamins and protein and stuff in it, but it is more like a koolaid flavored drink. He drinks it a lot better, so maybe we'll get somewhere with that. One other thing that I had them look at is his belly button. I have noticed in the last month or so that his belly button is an outtie, but looking back it was an innie. They said it was a very small umbilical hernia and was nothing to worry about. --School has started back for me and Robin as well as the boys. I really like it so far. I am in the prenursing classes now. I have to apply by October 31st to get into the clinicals which start in January. I am a little worried. There are 120 in my class and they only admit 60. They had previously admitted based on GPA. You have to have a minimum of 2.5, but it is competitive and in previous years a 3.0 GPA was the cut-off. I have a 3.09. That's cutting it close. And if that's not bad enough, they have just started this year a different admission rubric that gives points for not only your GPA, but points for the grades earned in other science courses like Anatomy, Microbiology and Nutrition and the pre-nursing classes I am in now. I just hope I get into the clinicals. I will be so devastated if I don't. Pray for me that I will do good in these classes and I at least make it into the top half of the class. --I guess that's about it. Thanks for checking in to make sure we're still kickin'. ~Hugs and Love~ Laurie