{\rtf1\ansi\ansicpg1252\deff0\deflang1033{\fonttbl{\f0\fswiss\fprq2\fcharset0 Arial;}{\f1\fswiss\fcharset0 Arial;}{\f2\fnil\fcharset2 Symbol;}} {\colortbl ;\red0\green0\blue255;\red128\green0\blue0;} \viewkind4\uc1\pard\sb100\sa100\f0\fs20 December 2, 2003\par Othello has physical therapy today. I am sure she will be proud of how wiggly Othello has become. He flips and turns and tangles himself. Which leads to this: We HAVE to shut off Othello's feeds at night, instead of day time. He wake up tangled in his feeding cords. He has it wrapped around his neck, arms, legs, anything and everything. \par Othello will now be on his feeds all day. No freedom during the wakign hours from tube feeding. This will be quite bothersome to me, but better than waking to a strangled baby. \par Also, he has become so wiggly that his legs get trapped, hanging out the side of the crib. He lodges his fat little legs in between the slats and cannot seem to get them out. Because of this Othello needs to go into a toddler bed. BUT, since he is sooo wiggly, he would end up face first on the ground. So, we are going to put him in a port-a-crib. The one with mesh sides that he cannot put his leg through. \par Oh the joys!!!\par ________________________________\par December 1, 2003\par This time last year, Othello was in and out of the hospital. His skin was tinted yellow, his eyes glowed like some scarey monster, and he was a month into his wait on the transplant list. \par There is a HUGE difference between last holiday season and now. This year, we are not AS fearful that Othello will not make it through. This year, we have more hope. \par Othello is still working on trying to crawl. Each day he gets closer and closer to being extremly mobile. Right now, he rolls and scoots to various places, so he does not get too far too fast. But, once he begins to crawl, it'll be all over. He will be racing around the house like the hare instead of the tortoise. \par Today, Othello and Mommy are goint to meet with Joye from the OPO here in town. We will be picking up some pins from her. She will get to meet Othello too. Othello LOVES to go out and about in the world. We try not to take him out very much. We are fearful that he will catch some bug and not be able to fight it off. \par Speaking of which, Othello STILL has a cold. He has been sneezing, coughing and slimy stuff has been ooooozing from his nostrils. He has been this way since a day or two before we left Miami (the hospital). \par I wanted to remind you all that we have 12 more days until the benefit dinner. We still have 50 tickets to go... I know it is the holiday season, and most are concerned about gifts and such...Let us take a moment to see how we can extend the Holiday spirit of giving towards Othello. \par \pard{\pntext\f2\'B7\tab}{\*\pn\pnlvlblt\pnf2\pnindent360{\pntxtb\'B7}}\fi-360\li720\sb100\sa100 If you give up Starbucks for a week (substitute it with homemade coffee) you could help Baby Othello, by purchasing a ticket to his trust fund benefit. \par {\pntext\f2\'B7\tab}If you took your lunch to work instead of plopping down a lot of cash on a daily lunch you could give a a donation to Othello's transplant fund. One week of lunches from home instead of a restauraunt means one round trip to the Transplant Center in Miami for Othello in an emergency. \par {\pntext\f2\'B7\tab}One night out at the movie theatre with popcorn and drinks could equal a months supply of one of Othello's medications.\par \pard\sb100\sa100 Do you think you could spare this to help out Baby Othello???\par If you are interested in joining us for dinner on December 13, to benefit baby Othello's transplant trust fund, please call 904-379-1320 or email \cf1\ul othelo@allothello.com \cf0\ulnone to get your tickets. Even if you cannot attend, and you would like to spread some Holiday good tidings, you can contact us about a tax deductable donation to help baby Othello...\par Thank you all very much for you ongoing love, support and prayers. \par november 28, 2003 \par the year is almost at its close. we are now in the holiday season. \par othello has been cranky for a few days. if he is not in my arms he is whining. he wants more attention than he gets already. i need to clone myself. he would love that (and daddy would too...another mommy to wash dishes, clean house, etc). \par he has not quite lost the yucki cold yet. but, it does seem to be getting better. nothing to be alarmed about!! \par december 3rd othello has a Dermatology appointment. they will look at the bumps that come and go on his body. mainly his legs. i am going to put my chips on a drug reaction. i will let you all know next week though. \par things overall are quite well..... \par please make sure you call or email about your tickets to the benefit dinner. information is in the column to the right!! \par have a great night. cover the plants, leave the faucets on drip drip drip....mr weather man says it is going to FrEeZe tonight. heater time!! \par November 26, 2003\par There are so many things we are thankful for. I say them quite often, and today I will reiterate...\par We are thankful that in a time of grief and tragedy, a family in Pennsylvania decided to give the most precious gift to our family. They gave Othello a second chance at life, through organ donation. This morning, Sebastian said : " I am thankful that my brother got his new guts and he is alive." \par We are thankful for all the family support we have recieved. The moral and emotional support has helped a great deal. \par We are thankful for the outpour of love, prayers and support from our wonderful community here in Jacksonville. \par We are thankful for every day that we are given the chance to spend with Sebastian and our little miracle baby Othello! \par Thank you everyone. A million times and more we could express our gratitude and it still would fail to be sufficient. There are not enough words to properly convey how wonderful and precious every gift we have received truly is. \par Othello is doing well. He met ALL his Physical Therapy goals for the month. He is still working on his OT goals. Ms. Mary (OT) will possibly be increasing the frequency of the sessions. This will help Othello to get up to speed quicker. \par Please, keep in mind Othello's buddy \cf1\ul CORY \cf0\ulnone had his Bone Marrow Transplant this week. His mother says he is doing quite well. They are spending the holidays in the hospital, and need all the happy thoughts they can get!!! Visit his page and leave him a message in his guest book!! \par We hope you all have a wonderful Thanksgiving!!! \par XOXOXOXOXO\par The Smith family \par november 25, 2003 \par yesterday the doctor gave us some great news. we will not have a clinic appointment for 6 weeks!! this is the LONGEST period of time the y have ever given him between appointments. i think he can make it this stretch without going into the hospital. last december, othello was inpatient for about 2 weeks. this december, it will be 0 days!!! \par his white blood cell count is also very good. so good, that the nupogen shots have been stopped! \par othello is doing well! thank you all for your kindness, love and support.. please keep othello in your thoughts. this is still a rocky road.... \par keep your eyes on channel 4 on wednesday, there MAY be a story about Othello!! \par Jennifer \par november 24, 2003\par today we awoke to a messy bed and a wimpering othello. othello had pulled off his ostomy bag sometime after 4 am. NICEEEEEE! othello required a bath, new bag, clean bedding and clothes. THAT was great, all at 7 in the morning. lucky us. \par today is sebastians birthday. the BIG guy is now 6 years old! he is a BIG OLD guy now. i asked him where were his wrinkles, he said he will get them when he is in the bathtub tonight.\par we got theCBC results from friday back. othello's nutrophils are looking great. he will not need the nupogen shots now. good thing too, he HATES the shots. \par today we have to drop off the checks from the art show into the COTA account at the bank. thank you for those who showed up!! we still have some art that i will be auctioning off VIA ebay this week. look for a link later on. \par othello has a GI appointment at 2. this look good overall, but he STILL has sniffles. i will ask what i can give him for this lil cold. \par hmmm. also, wednesday we will be doing a news story for channel 4. to give everyone a visual update on othello. yea!! \par and we are selling tickets for the dinner still. please get in contact with me soon. december 13 is the event. othello will be there to meet people!! (health permitting) \par november 22, 2003 \par sorry for the lack of updates. the server has been experiences trouble. \par last night, not as many people showed up to the art show that said they would =-( we were there for a while and OTHELLO was there too. you missed your chance to meet the seldom out of confnement othello. \par lets make the benefit dinner a BIGGER success. come on, it is christmas time.....a season for giving. and what better way to make a tax deductable donation?! \par well, overall othello is doing good. he has a tad case of sniffles, but that is it. YEAH!! he is still getting in that i wanna crawl but i am not sure position. toooo cute. \par well, Sebastians birthday party is today. so othello and i have to go pick him out a present. \par november 18, 2003 \par othello seems to have a bit of a cold still. he seems under the weather. we will keep a close eye on him and make sure he gets better. \par othello did well with physical therapy today. in the morning he has occupational therapy. thursday othello has labs and a scope to have done. \par we are preparing for friday's art sale. we hope all of you can come and help support othello!!! \par also, we have a limited # of tickets left for the benefit dinner. please email me asap for your tickets. \cf2\ul othello@allothello.com \cf0\ulnone \par .November 17, 2003 \par Othello had a finger stick today for labs. Not a fullblown needle to the arm. This seems to make him a little happier. Less time to be held down, which is the part he HATES. \par Othello is looking good. Except for a minor case of the sniffles he is doing well. \par Right now, the lil bugger is playing with his toys inside of his baby jail. He did not want to be held. So, I oblidged and sat him down. Good thing for me. I get a few moments to do something other than hold a baby. Don;t get me wrong...I LOVE holding my spoiled lil Othello, but I do need time to myself. November 14, 2003.. \par Today starts the donor sabbath. Remeber all of the organ donors. The ones who have passed and the living donors! They have given us all a wonderful gift....They have given us more smiles, more time, laughter, joy, a second chance at life!! \par Thank you Othello's Angel. Thank you Stormy's Angel. Thank you Amanda's Angels. Thank you to ALL of the angels who gave us hope. Those who allowed us another moment with those we love and cherish. You will always be a part of our families now. We love you!! \par -Othello is well. He is VERY active. EXTREMELY active...Thank you all for the concern, care and love you have shown us. Othello is an inspiration. \par Love you Othello!!\par ! \par November 13, 2003\par The last few days have been undoubtedly unnerving. But, I feel better now. I believe that Othello feels better also. He seems to get whiny when I get sad. So, I have regained composure and Othello is getting Chipper again.\par Othello has taken to scooting backwards. I am sure he wll be crawling in no time. He is eating by moth daily and he even seems to like the bottle. He has never drank from a bottle before.\par Tomorrow starts donor sabbath. We will be going to Trinity Lutheran on PArk and McDuff to honor those who have given a second chance to others like Othello. The gathering will be at 6:30 PM. \par Next week if Art for Othello. YEAH!!! I hope all goes good. \par Next week Othello has GI scope and Labs as well as therapy. \par I will update more later on. \par November 12, 2003 \par First, I would like to thank the many of you you sent me emails of encouragement and kind words. I realize that it was out of character for me to write what I did. But, I am human..I do feel pain. I am not ALWAYS Super Woman. (Even though I do a pretty darn good impersonation if I do say so myself) \par Secondly, the meat and potatos. Othello has a case of the snotty nose. We are going to hawk eye the boy.. Watch closely to make sure he progresses to nothing else. I have put Saline Drops into his nostrils (with a lot of reisistance) to clear up the I mean mucous. \i (Sorry Dr. George...I cannot help but call it Snot even though I kow It's not snot)\i0 \par Things went well today in therapy. Othello has been excelling during therapy. He continues to amaze the therapists, me and everyone else. He is such a strong little guy. I am sure if my tummy had been cut open and I was given new guts...I would just want to SLEEP! (But, I just want to sleep now....ahhh sleep...what a treat that would be) \par Othello has become Sebastians side kick. It was SOOOOO cute yesterday. Sebastian was watching the baby einstein with othello and Othello leaned over and put his head on Sebastians shoulder. Well, Sebastian promptly pushed him off and sat him up. Tooooo cute. \par Monday we have labs, to check Othello's WBC count. If all looks good, the Dr will discontinue the nupogen shots each week. I am sure Othello would very much apreciate that. No shot = no sore thigh. \par Cat in the Hat will be out soon. Othello cannot go to the theatre, so we are goint toplan a trip to the Drive in!! I LOVE the drive in. You can take your own snacks, load the kids in the car. If the baby cries, only you are disturbed. No one hurls popcorn boxes at your head, etc. \par Well, I must go now.. Othello is napping that means I have a small pocket of time to get somethings accomplished... \par OHHHH dont forget ART for OThello....one and a half weeks to go. In addition to selling outright some paintings, prints, etc. We will be selling tickets at 1$ a piece for a chance to win a signed original piece. \par No\par November 11, 2003\par Othello went to GI today as well as had labs drawn. He did rather well. Not a lot was done. Just a consult to dermatology and a reorder of his RSV shot. \par Othello is progressing very well with physical therapy. He seems to like Side Sitting and attempting to crawl. (He scoots backwards) \par I am sorry the update was late and short.. There is not much to report. \par I am kind of all upset over Amanda, Stormy, Caleb, and the others that have passed this year. I just want to squeeze Othello and never ever let him go. I am so scared that everyday will be his last....So, I spend as much times with him in my arms and talking to him, singing to him, playing with him. I do not want to lose my lil fat man. I love him so much. He is my world and I do not know how I would survive without his sweet little face. His cute little bubble blowing, and rasperry noises. His stinky poop and his fighting when i try to feed him. The way he grabs my face and headbutts me. The raised arms to me when he wants to be held (All the time). \par It is hard facing the inevitable mortality of a child. Every time we go to the doctors office, we pass a cemetary. I have driven into it and wandered around with Othello a few times. Crying the whole time. I know, I probably shouldnt. I know you will all say..dont think about it..cherish each day like it is your last.Well, I cannot NOT think about ut and I do cherish each day. Not many realize what it is like to TRULY treat each day with your child as if they will not be there tomorrow. \par The harsh reality is that he may never get to wreck the car while trying to learn to drive. Othello may not ever know how it feels to fall in love. He may never get to go hiking for days on the Appalacian trail. Othello may never get to graduate college. He may not have to deal with the trials of teenage years. \par I know-I know. Yu can tell me a thousand times. To be positive. And for the most part I am. I know Othello is a fighter and that he has proven MANY people wrong MANY times over. I hope he continues. I hope I am writing these updates to you for another 80 years. \par I used to be a dreamer. I lived in the fantasy world, I was carefree and spontaneous. Now I am a realist. I am afraid to leave Othello for 5 minutes, for fear I will never hold him again. For fear I will never hear his laugh again. \par I have to go for now, I am getting all worked up.....Sorry. Talk to you all soon...\par Jennifer \par vember 10, 2003 \par Othello and Sebastian are keeping each other occupied very well. I am able to get things done around the house when they are together. Othello watches Sebastian run around-Sebastian picks on Othello for being a baby. \par Tomorrow Othello has Labs, GI appt and Physical therapy. Sebastian will be tagging along, since it is Vetrans Day. Fun Fun Fun!!! \par Sebastian will be 6 this month. On Nov 24!!! He wanted me to tell you all that! \par We are going to have a pretty laid back day. Darin has school, the boys and I have veg time. \par Again...We have 11 days until Art for Othello. We need a few more pieces of Art. Paintings, photography, drawings, sculpture...etc. Please email me ASAP if you can help!!! All donations are tax deductable!! \par November 9, 2003 \par Sunday already...The weather is starting to resemble fall instead of summer time. That is the odd thing about Florida, you cannot really tell when the seasons change. We may just have to move North to notice the difference. (Then again-maybe we will avoid the drastic temp changes.) \par Othello has had a pretty laid back weekend. We have sat around the house. Othello has watched Sebastian and I clean. We have all played games and watched Finding Nemo and Baby Einstein. \par Last night, Jaden - Othello's cousin, stayed the night. Sebastian and Jaden had a good time. They played sword fight and play-doh, as well as other kid games. \par Othello....slept and woke up a few times. I TRIED to sleep. But, I have not been able to shake this sore throat and cough at night (it came when we were in the hospital last week.) \par Othello has a couple of Dr. visits this week, as well as labs and therapy. Fun stuff. \par We are still preparing for the Art Show. If anyone has some pieces they still want to donate to help out Othello.....Let me know ASAP. \par Also...Friday is the beginning of Donor Sabbath. If you would like more information you can go to \cf2\ul www.organdonor.gov \cf0\ulnone , or email me and I will send you information!! \par Have a good rest of the weekend!!\par November 7, 2003 \par Othello is doing well today. He is very happy to be home. Hospitals take something out of him. He does not get as active as he gets at home. \par Today, Othello keeps wrapping his feding tube around his body and neck. He does this because he likes to spin around and see what is going on. He has been clapping his hands a lot more too. \par I enjoy these updates where I fill it with a bunch of fluff. Nothing of any major concern. Those days are very very nice. \par Mommy is not feeling well today.. She has a sore throat and is all stuffed up. She got that way at the nice hospital (note sarcasm) in Miami. So, this means, mommy compulsively washes her hands (even more so that before) and she onyl goes by the baby if she HAS to. Daddy has to work, so it is all mommy!! That makes it hard to take care of a baby who cant really be around SICK people. \par The lil guy has been coughing too. Just a tad. I hope his poor little throat doesnt feel as bad as mine. \par Well, more to come.... \par Hope you all like the festive look to the site. \par Nov 6, 2003\par We left Miami at 1 P.M. yesterday. Othello and I (mommy) drove the 6 hours home. IT was quite peaceful . Othello slept for the first 3 hours and tlkaed for an hour, then he whined for about 2 hours. \par As soon as we arrived home and walked into the house, Othello was happy. He knew he was home. He started looking every which way, then went to Daddy, then back to mommy then to his toys!! HE got SO excited over his toys. It was like he had not seen his best friend in years and just was reintroduced. He shook and laughed and smiled. Too cute. \par Daddy made mommy REAL food and drew her a bath. But, daddys do not understand the concept of housekeeping...because mommy has a day filled with housework to do now!! \par Othello's labs all showed up yesterday. He is not in graft rejection or GVHD. The ulcer I saw on his stoma was from irritation. Cleaning the site daily causes the bowel to get very angry!!! But, when he pulls off his ostomy bag every day-you have to do SOMETHING. \par I wanted to send a BIG THANK YOU!!!! to Kim, Terrans mom. She introduced me to Ostomy Deoderant. A few drops and your house does not reek of baby poo for an hour after emptying the bag!! YEAHH! \par Othello's medication has not changed much, a couple of the meds went up on the amt to be given. No biggie, the reason-he is gaining weight. 22 pounds of Othello!! \par Well, I will update more later. Do not forget Nov. 21 at 6 PM the Cool Moose Cafe. Art for OThello\par !!November 5, 2003 \par 10:42 A.M.\par The doctors just rounded. Othello's donor cell went from 0.24 to 0.26. He looks good. There is no rejection of the organs. \par All this means. We are packing up to leave Miami. Othello is doing great. \par We will leave a noonish...Talk to you all sooon!!\par _________\par Appanretly there is a vampire loose in Miami. Othello's blood keeps disspearing from the labs. \par I do not want to wait around for weeks on end, hoping the lab does not lose the blood. We need these results. \par Othelo also needs to be home. I have noticed he is more active and tried to do more physically when he is in his own territory.\par Today, during rounds, I will let them know that we are going home if there is no medical reason to stay. Othello needs to be outta the hospital and back home.\par More after rounds...\par Jennifer\par November 4, 2003 \par Seems like going home will never ever happen sometimes. We are STILL waiting on lab results. Today is Tuesday, the results SHOULD be here today. \par If we get word before 2 that everything is A-Okay...Othello and I will journey home this afternoon. If it is after 2, we may just wait until tomorrow to drive. There is something not very fun about night time driving. Especially when you are sleeping on a chair. \par We miss Daddy and Bastian terribly. We wanna go home and all pile into a REAL bed and snuggle to sleep. Sleep, home and REAL food. Yes, that would be nice. \par Othello looks great. He is very active and is enjoying throwing his binky every which way. \par Hmm. In other news.. Othello's feeds have been increased to 55/hr for 18 hours. So, he now has a 6 hour OFF the feeding pump time. I am trying to get him to be hungry enoought to WANT to eat more by mouth. \par We just have to wait on results. Good thing he is not in any life-threatening situation, right?!? Hurry up and wait. \par The story of our lives. \par Jennifer & Othello \par November 3, 2003 8:00 P.M. \par The doctors did rounds a bit late this evening. Dr. Tzakis and Kato looked at Othello. Kato says that the Chemeric studies have not gotten back yet. But, Othello's Lymphocyte count is in the 700 range. \par Morning rounds will be maybe 9-10..ish. When they do the rounds I am going to request all the lab results, biopsy results, and chemeric study results. Once we have those, we will know wheteher or not we can return home. We may (small chance) need to stay in Miami for another dose of Campath. We hope not though. \par I am also going to ask about Othello's feeding. I would like to see him at 12 hours a day on the feeding tube instead of 20. I KNOW this is a HUGE difference. But, Othello will not eat any more by mouth, unless we make him hungry. \par More tomorrow. Check back around noonish, there should be an update. Hopefully saying we are headed home to Jacksonville!! \par Thanks to the Mette Family for the haunted trail event, they raised a couple hundred dollars for Othello. Also, thank you to the Chase in Maitland Florida (Friends of Tiffany PAte) Chase raised 750$ for COTA for Othello S. \par P.S. Baby Einstein is the most WONDERFUL creation ever!!!! \par November 3, 2003\par P.M.\par And we still wait...for test results. It is after 2 p.m., so I will not be driving to Jacksonville tonight,even if they do release Othello. I do not want to drive 6 hours through the dark with Othello. \par I will let you all know soon.\par Monday....Monday....\par Othello was visited by the doctors, coordinators and the others from the transplant team this morning. \par We are still waiting for the Chemeric Studies. The results should be here sometime today. The results will indicate whetther Othello needs another dose of Campath. From his CBC, we know that his lymphocytes are increasing. That is a good thing for his immune system. Now it is time to find the balance between too much and not enough immunosuppression.\par Dr. KAto has requested that another biopsy be taken from Othello's ileostomy. They will biopsy his "ulcer" on the stoma. The scope looked good yesterday, we will await the official results sometime today.\par I have to call Othello's therapists and put his at home therapy on hold for this week. We MAY be leaving today, possibly tomorrow. \par Please be patient and understanding about the time it takes me to update. I will let you all know as soon as I do. \par Jennifer signin off from Miami\par November 2, 2003\par Othello had his scope this a.m. Things look a little irritated close to the stoma. There are villi in teh intestine still, so that is a good sign. The biopsies were taken, and we will know results tomorrow. Things look good so far. \par Othello has been perky and playful. Moving around in his hospital prison crib.\par He seems to enjoy babbling to the nurses and sitting in my lap.. Just like at home..Lap Baby.\par The plan is to return home warly this week. As long as Othello's labs tomorrow indicate nothing is amiss. \par ___\par Michelle is back here with her mommy May. Michelle has a little touch of rejection, but since she is 7 months post transplant, it is not AS worrysome. Still unsettling, but nothing that cannot be fixed. \par Sarah is in the room next door. She is waiting on 2nd transplant. She is two and needs an intestine and pancreas. Her first set have been in rejection for quite a while. They have been here 8 months....\par Kim and her son Terran will be here tomorrow. Terran has to get his Stoma operated on. It keeps going in and out. \par I will be adding pictures later on..as soon as I get some batteries for the camera.\par November 1....10:00 PM \par Othello and Mommy are in Miami. Othello gave us a scare with wha appeared to be an ulcer on his stoma (his poopy hole on his side). He also had some blood from it. The Dr looked at it and thinks it may be irritated. \par Scope will be done tomorrow, biopsies taken and labs drawn. Monday we will have tcell subset results from last week. If all looks well on the scope and labs, we will return to Jacksonville Monday-tuesdayish.... \par Let Daddy know we MISS him bunches. Give him LOTS of hugs from us, til we get back. Also, give Bastian kisses and tell him Mommy and Smellio will return soon!! \par More tomorrow.... \par Jennifer and Othello \par It is now November 1, 2003\par Count down...23 more days until Sebastian's Birthday! He will be 6!!! Time DOES fly. \par Othello had a GREAT time last night. I was not going to take him trick or treating...So, we went to see the grandparents. He saw Gramma Helen and Darlin', Gramma Teri and Granpa Charlie and Mr. Akers and Mrs. Akers and aunt Niiiiiiiiiiiiiiiiiiinaaaaaaaaaaaaaaa. He also saw his friend Summer! Summer is 4 months younger than Othello. AND Summer is WALKING!!! Soooo cute. Check the NEw pictures page to see a picture of the two of them!!\par This morning, when he woke, I noticed 3 small bumps on him. One is on his neck, one on his arm, one on his back. I will keep an eye on them. MAke sure they go away and not spread. They do not look like measles, mumps, chikin pox, or anything I have seen. Just little bumps, like ant bites with no puss. So, I will keep a hawk eye on Othello. \par Well, we are going to go play in the living room now. HAve a good weekend. We may not update until Monday at noonish... \par ~Jenn\par Hal o weeeen \par Oktoburr 31, 2003 \par Momi hurt her nek las nite when she piked up sebastin at the carnivul. I told her it waz cuz she didnt take me. So I hav to type the update tuday. \par I am dorable in my clown suit. Ant Jenny (Yeah I though she be a lil inseck tu, but she is a tall lady) gave it tu me. \par We R not goin trik n treatin cuz I kant go out in tha werld. But, Sbastin is going with hiz friends and wif dady. So he may bring me kandy. I sure hope so. \par I feel gud tuday. I may not giv momy a fuss. But.Who knowz..she didnt tak me to tha carnival. \par _Luv\line Otello \par october 30-2003 \par othello had a pretty swell day, yesterday. he played a lot. babbled even more. \par he got some presents in the mail... \par Melissa V.- Thank you for the Imodium and the CUTE talking animal! Othello is playing with it still. \line Valeria J. - Lots of BIG HUGS from Othello. He is mezmerized by the Baby Einstein tapes. ( I am actually able to type this sans lap baby!) \par Angela S. and The MEtte family of Maclenney are doing a GREAT job hostinmg the 5th annual haunted trail! Sebastian went out there and got SPOOKED out. Then he gathered his marbles, and became a scarer instead of a scareee!So, don't miss it! You have three night left. Tomorrow- candy candy candy on Halloween. Why not take the kids for a fun filled night of spooks and candy? Plus you get to help lil Othello!! YEAAA... \par Yesterday O.T. was cancelled. Ms. Mary was sick. =-( Get well soon Ms. MAry!!! Today is speech therapy day. Othello will have the nice lady come and tick him off like mommy does, by feeding him!! (How DARE Them..Food in a mouth...So wrong.) \par The little guys looks good. HE sounds good. And I am optimistic that the labs we shipped to Miami on Tuesday (again) will not indicate we need to take a trip south. \line October 29, 2003 \par Othello had a great time at ohysical therapy yesterday. He did not get too upset with her. He is able to hold himself up a little more steady. HE is also scooting around and trying to grab things. \par Tomorrow is Occupational therapy. I am sure that Othello will enjoy that too. He gets nice therapists to come in and play with him. A break from the mommy. I know he loves me, but he sees me ALL day ALL night. I am sure he likes a new face every so often.\par Othello had labs drawn yesterday. These labs will be sent to Miami to be tested. They are for the T-Cell subsets and a chemeric study. These will let us know where the donor cell and host cell levels are. Hopefully this indicates that he does not need more campath. This Friday, they will draw another set of labs. (For the normal CBC, FK, PT, PTT, etc.-Basically to watch his levels.) \par If anyone has any art they would like to donate to Art for Othello, please contact us this week. We need to get a few more pieces to sell for Othello. \par Dont forget..Haunted Trail!! On Halloween night, you can even get candy!!! A family event, to help OThello!\par Talk to you all later today!!!\par ~\par October 28, 2003 \par Sadly, Othello had to get labs drawn this morning. The lab in Miami has misplaced the last two sets we sent them. The coordinator in Miami, the nurses up here, and myself are very upset. I am sure Othello is upset too. He seemed to not like the sticking of the needle much today. (Who would?)\par Today we have Physical Therapy. Othello enjoys the visits from the therapists. Hopefully he will be a bit active for her today. Show her all the neat tricks he has been doing.\par Last night, Daddy saw Othello trying to reach up onto the coffee table. We had set him down a few feet away from it. HE somehow got over there and wanted something that was on it. But,Daddy stopped him just in time. HE WPULD have been wearing water! \par Othello LOOKS good today. He is not as whiney either. HE actually let mommy get some things accomplished. \par Check out our friend Terran's New website. Mommy set it up for him and Ms. Kim (his mommy). \cf2\ul www.terranstransplant.tk \cf0\ulnone Terran had a Multi-Visceral transplant too! In September of 2002.. \par Dont forget to go to the haunted trail. Sebastian says it is SCARYYYYYYY!!! BOO!\line More later. \par \line Hmmm..New NEWS: Cookin for Othello is D-O-N-E ..Finished. If you wouldlike to purchase a copy of "cookin for Othello" cookbook then email us at \cf2\ul othello@allothello.com \cf0\ulnone . This is a 60 page booklet of recipes submitted by some nice people. Over 50 recipes: from Cajun Spagetti to Kahlua Chocolate Cheesecake! \line $10 + $2.50 S/H All proceeds to benefit Baby Othello's transplant fund! \line For now you can send your order and payment to:\par Othello Smith/ Cook-Book\line PMB 127\line 3832-010 Baymeadows Rd.\line Jacksonville, Fl 32217\par October 27-2003 \par Today we will find out if the labs have been misplaced or if they have results. Hopefully they have some results. With any luck, Othello will not have to go to Miami, or get stuck for 20 cc's of blood again. \par This weekend Othello showed his SPOILED rotten side again. It is alright, when you first wake up, to hold a baby for long periods of time. \par Here is how it goes: \par Othello wakes...must be held. \par If you set him down for a second (literally) he cries. Even if you are right next to him, playing with his toys-he cries. \par I have to keep him quiet, because Daddy works 12 hr shifts at night! So, daytime is daddy's sleep time. Which makes it even tougher. I cannot just let Othello whine for a few moments while I go to the lil girls room, or cook breakfast, or get meds ready. \line Othello HAS to be attached to my person, or he cries..LOUDLY! \par Now, you would think that woul dbe easy. Hold the baby for 8 hours straight. No problem. BUT, he get bored. OThello HAS to have a different view every 5 minutes, or he CRIES! \par So, I hold him: walk outside, walk inside, sit on the rocking chair, sit on the floor with toys, watch the cartoons, take othello to his room, go back outside, walk around the yard..etc. every 5 minutes another change of venue. \line This is TAXING! \par As I type to you all. He is in my lap, batting at the keys. Cute you say? Well, it takes twice as long. \par Yes, I know, I am grateful he is here...Should not complain. But I am sure EVERY parent gets a case of the: "Please entertain your self for a moment kid." \par If you say it is not so, you are a big fibber!! \par \line Anyhow. Othello's lab results SHOULD be here today. I will let you all know something as soon as I do. \par ~Jennifer \par October 24, 2003 \par Hush little baby don't say a word....Shhhhh. \par Tha widdle baybey is sweeeeping. \line Othello is napping. IT is 10:30 a.m. WOW. the last 3 hours have been an event. Othello has been talking and whining and bonking himself with his toys. HE even scratched my nose innerds when he grabbed me. WOW..Othello gave me a bloody nose (again). \par Othello is now taking 50CC of formula through his G-Tube. We are going to increase his baby food feeding to 2 jars a day. Reasoning here?? Othello has not gained weight in about 2 months. He is Mr. I weigh 21 lbs and I refuse to get any bigger. \par I am STILL awaiting lab results from Miami. I will be calling AGAIN today. Hopefully I can get SOME answers. It is frustrating to know that there are lab results you NEED and you have waited 2.5 weeks for and have gotten NO information. (Had to vent..sorry) \par Hmmm..New NEWS: Cookin for Othello is D-O-N-E ..Finished. If you wouldlike to purchase a copy of "cookin for Othello" cookbook then email us at \cf2\ul othello@allothello.com \cf0\ulnone . This is a 60 page booklet of recipes submitted by some nice people. Over 50 recipes: from Cajun Spagetti to Kahlua Chocolate Cheesecake! \line $10 + $2.50 S/H All proceeds to benefit Baby Othello's transplant fund! \line For now you can send your order and payment to: \par Othello Smith/ Cook-Book\line PMB 127\line 3832-010 Baymeadows Rd.\line Jacksonville, Fl 32217\par October 23, 2003 \par I am STILL awaiting an answer as to what Othello's two weeks ago, sent off to Miami labs came back as. We do not know yet what his donor cell to host cell ratio is. We are not sure when/if he will need Campath again. \par I am sorry I cannot answer your questions everyone. We are not sure if or when Othello and mommy will venture back to Miami. Which is very unsettling. Our lives are -hurry up and wait- . It has been like this since the beginning of Othello's in-utero diagnosis of gastroschisis. You get this knot in your tummy and it is so hard to get rid of. Even after you get an "all clear". \par I will update you all as soon as I can. \par As for today: Othello seems to be doing well. He is happy and playful. He saw Aunt April and Great Aunt Sheryl for a couple of minutes. He HAD to be held. He did not want to just sit in the car and watch us grown people blab! \par Check out the Fundraiser page...Right now...until Nov 1...The HAUNTED TRAIL is every night (except the 26th). ALL the proceeds go to Othello!! \par __Check back soon__Hopefully I will have some actual news to report. \par october 22, 2003\line today starts the Haunted Trail to help benefit Othello!! \par Please check the fundraiser page for information and directions. \par I wanted to extend a special thanks to Tiffany Pate and her friends in Maitland Florida. These wonderful people learned about Othello through Tiffnay. They have since said many a prayer for Othello and now they are holding a month long bake sale to benefit Cota for Othello S. They also are holding a Hot Dog Sale this friday.THANKS!!!! \par Othello had a good time during Occupational therapy today. HE clapped, played with bubbles and looked at himself in the mirror. \par Overall, Othello seems to be doing well. No vomitting, no fevers, a little blotchiness to his skin, his food has increased, and we are trying to chunk him up!! \par Also, coming in November is the Donor Sabbath. Please go to \cf2\ul \cf0\ulnone to find out more! \par Save a life...become an organ donor! \par October 21, 2003 \par *****Important***** If you have gotten the FloMist Flue vaccine, you CANNOT be around Othello for at least 3 weeks post vaccine. It is a LIVE vaccine and "cooties" can be spread from you to Othello for up to 3 weeks!!! \line Please keep this in mind when you get your Flu Vaccine this year. If you plan on seeing Othello or any other Transplant recipient...Get the SHOT not the LIVE nasal spray vaccine!! Thanks.. \par \line Tuesday.. Busy early day today. \par Othello had about 20 CC's of blood drawn today for lab work. They are checking his WBC count, his lymphocytes, donor cells, etc. etc. etc. Too many to name. We will see how he is responding to the neupogen shots. We will also see how his Liver function is going. \par I suspoect all looks well. Othello seems to be doing better than I expected. HE has stopped vomitting all together. \par During his GI appointment, it was decided that we should increase Othello's feeding rate by a few CC's an hour. He has not gained any weight in over a month. This would seem odd to anyone who has seen him, he is so FAT! he just looks and feels bigger every few days. \par His is "modeling", which means his skin is splotchy...Where the GVHD rash used to be. We asre unsure if it is the GVHD returning or if he is just splotchy for no good reason. Labs have been sent off to determine if we indeed need to go to Miami for another dose of Campath. We will now know this for a few days, at least. \par This afternoon, Othello had his P.T. The therapist worked with him despite his annoyance with the waking world. He had to get up from his LATE nap to have physical therapy. HE did not like that one bit... \par Thanks all for your concern, patience and love!! Talk to you soon. \par ~The Smith's \par October 20, 2003 \par Today will be uneventful. Othello's speech therapy has been moved to Thursday this week. No labs, no doctors, no therapy. Zero Zilch Notta!!! YEAAAA. We have the daily numerous medication and baby play time. \par Othello does not like to be alone for any amount of time. He whines until someone picks him up or plays with him. He has even take to raising his arms when you come close to him. As if to say "Pick me up!!!" \par His skin does not look as red and splotchy this morning. Hopefully it is not GVHD and just a minor skin irritation. We are not using anything new, soaps, detergent etc...So, I will continue to keep an eye out. \par Tomorrow Othello has labs drawn. OUCHIE! He also has his GI appointment and physical therapy. I am sure the therapist will be happy when she seems him clapping so well!! \par Rmeber the Haunted Trail begins on Wednesday!! BE THERE and GET SCARED to help Othello! \par Well, nothing exciting to report. Any questions? Comments? \par Bye bye! \par october 18, 2003 \par othello is playful and well. he has been batting around toys all morning long. clapping seems to be his new favorite pass time. he gets so very excited and laughs while he is clapping. \par his skin is still blotchy. luckily there are still no fevers, vomitting or other indications that there is something wrong. i will keep a close eye on othello and make sure the splotchines s does not persist. if the skin does not clear up soon, we will take a little trip to miami for some tests. we do not want to battle acute gvhd again. \par tonight is the country boil at the tip top tavern. remember it is a donation of 5 $ for all you can eat shrimp and more. there will be an auction, food and kareoke. please attend. tip top tavern is on main street towards the trout river..hope you all can make it. \par October 17, 2003 \par This morning, Othello had to go get labs drawn. This is for his White Blood Cell count and his Prograf level. Just to explain: The WBC count will determine how often/how much neupogen Othello will receive. We may not know this until LATE this afternoon or EARLY monday. Therfore, I will probably not be posting any lab results today. Please be patient. \par I told you all earlier on that he was becoming splotchy again. I will be keeping an eye on this very closely. His skin is NOT alligatory or peeling or raised in any way. Even so, this is how the GVHD presented before (at the beginning.) I will let you all know something as things get better/worse. I am not saying it IS GVHD and not saying it IS NOT GVHD. \par Please understand: If Darin and I do not give you an answer or explaination right away, it is because we do not yet have one. We do not withold information. We want to keep everyone informed about Othello. Especially those who are going through/about to go through similar situations. Please understand and be patient. \par October 16, 2003\par OThello is doing well today. All the therapies went well this week. He is doing a LOT more than I expected, or anyone did for that matter. \par Othello does not sleep as much as he used to. He now refuses daily naps, which puts a strain on me. I need SOME down time..ARRRGH. I am sure you know the feelign if you are in a similar situation. \par Tommorrow night is Amanda's viewing. I hope that her parents and sisters are well. I know how hard it is to watch a child slowly deteriorate. But, I cannot imagine the pain they must feel from losing their precious Amanda. Please let them know you care and are thinking about them. \cf2\ul www.buddemeyerfamily.com \cf0\ulnone is her website. \par Othello is good. But, there are some people out there that are not doing so well. I am not one to bring my opinion on others lives to the forefront, so I will let you all read and make your own decision. Keep in mind, we do not have all of the information, but what we do have you can find here: \cf2\ul www.terrisfight.org \cf0\ulnone . This is about the 39 y/o woman who has just had her feeding tube removed per Dr/Husband/Court orders. She will basically starve to death w/in about 10 days. \par Othello is sustained by a feeding tube. We all know he was kept alive by IV nutrition before. I know that I could never withhold food from him to kill him. If I did, or any of the other parents who have similar situations, we would be sent to prison I am sure! Please read Terri's site and see for yourself how this plays out. Hopefully a life will not be lost. \par October 15, 2003 \par Othello is doing wonderfully today. He has been "side sitting" and playing with toys. His Occupational Therapist was here for about an hour, working with him on things. \par Othello seems to enjoy all the attention. When he is overworked though, he will let you know. \par Things have been pretty good for OThello this past week. He has been more active than ever. Now he enjoyus banging on his new drum. It is so adorable. He even tries to EAT the drum sticks. \par Each day he gets a little stronger. He learns to do a few more things. Babbles different sounds. It is amazing watching any baby grow up...But, even more so when you "techinically" were not suppose to see him live to see his first birthday! \par GO OTHELLO!!!\par Monday October 13, 2003 \par Othello had a fairly quiet weekend. He played some games and watched his brother run around. \par OThello has been talking a lot more lately. He also seems to respond to certain words. If I call for "Othello" he does not look towards me, but if I say "OSmellio", he turns and faces me. (Osmellio is his nickname from Sebastian) When I say "Sebastian", Othello smiles really BIG. \par Speech therapy is today. Tomorrow. Othello has Ot and Wednesday PT. Tomorrow, he also has lab work to be drawn. Poor little guy, has to get stuck in the arm. \par Well, we are going to play with elmo now. Bye. \par Hugs from Othello... \par __fundraiser__Benefit for Othello___ \par If you have anything you would like to donate to be auctioned off at The Benefit for Othello, please contact me @ \cf2\ul othello@allothello.com \cf0\ulnone . We are in need of items like a weekend getaway at a B&B, Dinners for two at a nice restaurant, etc. If you have these or any other item you would like to donate, let me know. All contributions are tax deductable. \par October 11, 2003\par Let me begin by saying...Othello is doing great. He had a little sniffly nose for an hour or so..But, he is doing well now. No fevers, no anything abnormal. \par I was not going to even update today...because it was so uneventful...\par But....little did I know....At our home away from home..JAckson Memorial...Something was happening.....\par Amanda Buddemeyer passed ay today, October 11, 2003, at 7:30 p.m. Her parents are heartbroken...As I am know we all are..... \par Please, keep them in your thoughts. Monica and Mike are wonderful people and gave Amanda everything they could. They fought for her, cared for her and loved her very dearly. \par She is now at peace..\par Amanda, and her family are part of our "transplant family" and it is so very hard to read these words. I cannot hold back the tears. \par If you would like to read more about this wonderful precious little girl Amanda, her website is \cf2\ul www.buddemeyerfamily.com \cf0\ulnone\par Thank you to everyone for prayers and well wishes. We all need to direct them to monica, mike and their family right now. Amanda is at peace now. It is the families time to grieve and start the healing process. \par ___\par It is shocking. Heartbreaking and thought provoking. We have lost so many of Othello's fellow M-V transplant "siblings" over the past few months. It is hard. Difficult. Painful. \par I am successful at blocking out Othello's mortality most of the time. But, each time one of the childnre passes, I wonder..."Is my Othello next?" \par I know I am usually very positive. But, it can be hard at times. I am only human. \par Note to "Grampa" Charlie: Othello's does smell like hot chocolate!! \par October 10, 2003 Welcome to the NEW site. I hope you all like the new format, with all the flashy things. You will still be able to access the old site too. I have left it up for those of you who cannot use flash or just plain prefer the old site. On to Othello: Othello is doing very well. Nothing really to report. Othello is starting to grab for things more often. He wraps his little hands around a toy and gives it a good yank. Othello seems to enjoy throwing things to the floor also. The lil guy enjoys looking around people, things to see what is actually of intrest to him on the other side of them. HE is beginning to realise things do not just dissapear when he cannot see them. Well, I will update you all more later. Jennifer......... \par October 8, 2003 Othello had physical therapy this a.m. He seemed to be a little cranky, So after Ms. Mary left, I attempted to put him to bed for nap. He refused the nap and got really loud in protest. This afternoon he has Occupational Therapy. Hopefully, he will have napped before then. I am sure she doesnt need a cranky baby too!!! =-) Things seem to be going well. He looks good. Othello has a bunch of baby energy and is babbling like crazy. He has taken to picking up and throwing golf balls. More later.....Time to go play. __ \par October 7, 2003 3:44 p.m. and finally Othello and I are home after a long day of doctor visits. We began the day with blood work. 20 cc's of blood were drawn. WOW. The off to GI, where Othello was weighed, measured and given the once over. He is on the verge of 21 lbs and 2'-3". Othello had an upper GI done today in Xray also. We wanted to insure his G-tube was in the proper place. It is!! Liver functions tests are normal, WBC count looks good, nutrophils are a-okay, and we will know the prograf level later on. Have a good evening... Jennifer \par October 6, 2003 (Sing to the tune of the barney intro song) "Barney is a dinosuar that I would like to mute, but every time othello watches he just has a hoot...Barney bothers me a lot, so much i want to scream...maybe i will wake up and it will all be a bad dream." Anyhow...Othello seems happy to watch Barney, he even talks to the BIG, PURPLE, annoying, walking costume. Our Schedule this week so far: Monday: Pick up Meds Tuesday: P-U formula, GI appt, Hematology appt, Labs Wednesday: PT, OT, Thursday: Friday: Othello's doing well. No fever. His output looks good. Hopefully we will be home for a while...But, probably not. Knowing his love for nurses!! More later on!!! ____ \par October 5, 2003 ~The day starts out eventful. Othello pulled outhis G-tube (again) and yanked off his ostomy bag. Nice!!! Daddy and Mommy tried to put the G-tube button back in, with no luck! So, at 645ish, we were rushing BACK to Wolfosons ER. Dr. Dokler was called and she put the button back in. (With the help of metal tapers). Othello HATED it. But he set an Othello record. We were home at 8:30. So about 2 hours from leaving home to the Returning home. That was the shortest hospital visit Othello has EVER had!!! YIPPPPIE!!!! ~From what her website says: Amanda is out of the O.R. and doing good. I hope things travel a better course this time for her!!! ~Sebastian is ill today. So, he has to stay away from Othello. This makes him sad. I know he missed his brother and wants to come home and play with all of us!!! \par October 4, 2003 Othello was released at 1:30 p.m. He is now home and loving it!! Playing in his swing is always exciting!! Now to get the prescription filled!! NO ONE seems to have Cipro!!! AKKK! The latest update on Amanda is that she is about 4 hours from end of surgery. From the updates, all seems to be going well. Bye \par October 3, 2003 Dear Daddy's Nurse friends at work: Tell Daddy I said Happy Anniversary!! Love, Othello. ______ Friday afternoon. I am sure you were all waiting on an update today. Sorry for the delay. I have been busy busy busy. We did a whole lot of sitting and watching cartoons today. The only event: Othello pulled out his G-Tube. He just put his little hand around the Mickey Button and yanked it right out of his stomach. Usualy, we just pop it right back in place. This time, however, I could not get it in. The nurse had to call in the Surgeon. Dr. D popped the Button back in, after a little bit of work. It is back in place, not problems. Othelo is playing in the walker. He seems to be havng fun. Well, we hope to go home tomorrow. Othello's White Blood Count has been dropping again. His prograf level fluctuating too. So, we may have to wait and see what the "plan" is. I will update later on. Also, there is a potential donor for Amanda in West Palm Beach. Please pray and hope for the best this time. The last few have fallen through. Maybe this is her chance!! Jennifer \par October 2, 2003 After Rounds: Dr. Taufiq came to see Othello today. He says that Othello is looking good. They are concerned with his White Blood Cell count fluctuating. They are also concerned that his FK (Prograf) level is all over the place. From levels of 2 up to 44. The norm for him right now is 5-6. Some calls and research will be done, and we will get his level back to normal. Othello still has a tad bit of spit up. Mostly secretions (What we like to refer to as Snot...Or the P.C. way mucous.) Lil fat boy wants to go home and relax. So does Mommy. We should be released this weekend!!! YEAAAA!! ______ Darin and I know what it is like to watch your child slip further anf ruther away from you. The only thing sustaining life being constant blood transfusions, Ivs and Tubes. We know what it is like to wait and wait and hope that a donor is found soon. We waited for 5 months, we waited for a month and a half in a critical status. Amanda is waiting. She is deteriorating day after day. She is in pain, and so are her parents. We cannot do anything to help ease the suffereing of this family. Well, that hurts!! They are like a family to us...They are our "transplant family". I am asking all of you now to stop and think. Think about what you would do if presented with the choice to donate your loved ones organs. Would you say "No". Why? There are many reasons families say no, and mainly they are not educated on the benefits of organ donation and they have misconceptions. If you have some hesitation..Please read the organ donation information page...It is on the left in the navigation bar. Now, I am asking...If you are presneted with that choice in the next few days ask a few questions. This may not be appropriate, but I am begging of you all. If your loved one has type O blood,Please specify that you want the donation to be "directed" to Amanda Buddemeyer. This may just save her life. It is not guarenteed that they will be a match, but every effort gets us closer. If you have time and are in the Miami/Dade area and have O blood, please go donate some blood to Amanda Buddemeyer. You have to designate the donation for her. So, just say...Id like to designate my donation for Amanda Buddemeyer. Thannk you all for listening. __about the fundraising ball__ The benefit ball is in the planning stages. December 13 is the tentative date...Please make a mark on your calendar! This will be a HUGE event to benefit Othello. We have decided to also include 2 year old toddler Emma in this event. We met Emma and her parents during the most recent trip to the hospital. She was given a new heart 2 years ago!!!! Please visit her site for more information www.Emmas2Hearts.com \par October 1, 2003 The month of Halloween. Autumn begins, pretty leaves, cool crisp air. Ahhh. Othello has decided to spend the first few days of Octobeer at Wolfson's. His fevers have not come back!!! Yesterday, he had an upper GI study. The new transit time of an hour and 45 is great! This is a good thing, that means he is absorbing his formula, and does not have diarreah 24-7. Today, the doctors will do rounds and look at OThello. The plan of action is: Give him the last 2.5 days worth of IV antibiotics and then release him to go home!!! This is great! By week's end Othello will be sleeping in his own bed again and mommy will be able to relax a tad bit. Daddy and Sebastian will actually get to see us. (Well, Daddy stops by for an hour or so here and there and stays over night sometimes.) Please don't forget about the great fundraising events we have planned this month. The 18th is the Country Slow Boil at the TIP TOP. Oct 22-31 is the Haunted Trail (take the kiddies). Have fun, have food, and help Baby Othello!!! I will be discussing the Art show/Sale this friday with the owner of a cafe in riverside. More information wil be coming soon!! \par \par \pard\f1\par }