GOD WHERE IS MY SON WHERE IS HE BRING HIM BACK TO ME PLEASE MY HEART IS SO EMPTY WITHOUT HIM WHY DID YOU GIVE HIM TO ME AND TAKE HIM WHY DID YOU FILL HIM WISH SUCH LOVE SUCH SWEETNESS WHY DID YOU DO THIS TO ME

I HATE THE DOCTORS IN MIAMI I HATE HOW THEY OOULD NOT SAVE MY SON WHY MY SON WHY DID HE DIE DAMN THEM DAMN THE POIITICS DAMN ALL OF THEM IF IT TAKES ME THE REST OF MY LIFE I WILL MAKE SURE THEY SHAPE UP AND DO RIGHT BY THE CHILDREN THESE ARROGANT DOCTORS THAT TREAT OUR CHILDREN LIKE CATTLE IN A MARKET WHO WRITE TEXTBOOKS THAT DICTAKE WHATS DONE I WANT TO BURN THOSE DAMN BOOKS

WHAT IS THE PURPOSE OF THIS TEST GOD WHY DO YHOU LET THEM LET MY SON DIE NO ONE CAN TELL ME WHY HE DIED AND THE WAY HE DIED STILL HAUNTS ME IF YOUR READING THIS TELL ME WHY DID MY SON DIE WHY DID YOU WAIT TILL IT WAS TOO LATE TO SAVE HIM DID YOU NOT KNOW HE WAS MY

LIFE MY SOUL ARE YOU SO CALOUS SO HARD THAT YOU DID NOT SEE YOU DID NOT JUST LET MY SON DIE YOU KILLED THE BEST PART OF ME YOU KILED A PART OF ME I CAN NOT REPLACE TERRAN LIES IN A COLD DARK TOMB ALONE AND SCAED I KNOW HE ISW WITH GOD BUT GOD DOES NOT DESERVE MY SON HE WAS TOO GOOD FOR HIM

I WAS A GOOD MOM I TOOK GOOD CARE OF TERRAN I DID EVERYTHING IF HE NEEDED ANYTING WANTED ANYTHING DESIRED ANYTING I SEARCHED HEAVEN AND EARTH JUST TO FULFIL HIS HEARTS DESIRE. SOOOOOOOO WHY DID HE LEAVE ME

I AM SORRY I CAN NOT TAKE THIS HEART ACHE THIS SADDNESS THESE EMPTY ARMS LONGING TO FEEL THAT SWEET FACE THAT WAS UNIQE TO MY SON.

i OVED EACH AND EVERY ONE OF THE FAMILYS I WAS ABLE TO HELP OVER THE YEARS BUT PLEASE IT WAS NOT ME IT WAS TERRAN IT WAS BECAUSE OF TERRAN I DID ALL I DID I AM NOTHING WITHOUT HIM.

SORRY FOR MY RAMBLING I SAY HERE WHAT I CANT SAY ANYWHERE ELSE I JUST FEEEL SO EMPTY AND NEVER NEVER WANT ANYONE TO FEEL HOW I DO TONIGHT AND IF THERE WAS ANY WAY TO SAVE TERRAN I WANT TO KNOW DMAN IT MIAMI TELL ME WHY MY SON DIED AND HOW.

KIM

Sept 29 2006



TOday was the hardest day so many people so much love sent my way jennifer amanda susan jessica sooooooooooooo many nicki terrans nurse from all childrens stayed up late with me last night late on our porch just talking and remembering this special child



today I did not cry so much i could not seeing so many wouldl look to see what happened to terran to if another mom would be allowed to do as I was. Dr Reinstein was at terrans funeral god it meant so much to me he truly cared for my son choking back the tears over come with grief so many filled those halls the room was so pretty terran would be proud of me. I hope i pray he is close by me. But

I wish so much sooooooooo much for every thing to dissapear and my son be at my side. He was my reson to breath my joy my biggest problem now is what do i do how do i bring that strenth back how when my very reason for breathing was him and his light that now is so dark



I sat with cephas to night my poor son in my grief he got left behind feeling so guilty so lost and so alone as lost and alone as I but see for years its been dennis taking care of cephas me taking care of terran our family looked broken but it was not dennis took care of cephas's needs I took care of terran so now that I no longer have terran i feel like a 5th wheel cephas felt that i did not love him as much as I loved terran but I love each of my children and mygrandchildren yes terran filled a special place in my heart not because he was sick no he needed me not just to do his feeds tpn etc he depended on me as much as i did him never in my wildest dreams did i think i would have to live without him at my side



Nicki just left a short time ago i see she posted for some reason i was ok as long as she was here shes easy to draw strength form i went to walmart for the first time only to get his pictures developed get an album for his pictures but all i could see was terran every where his movie was out on tuesday as i glanced to the right i thought who am i going to buy for now its nto that easy terran did not ask for much mainly all he ever wanted really wanted was me at his side cuddling and watching movies so when i brought him somthing no matter what hte cost he was so excited so full of love no one else in this world ever ever was so excited and loving as terran was to me. after nicky left I cried so hard as hard as I did the night my son left me. I hated god I cursed him for having the gaul to take my beloved son from my side how dare him how dare him i M a good mom i took good care of terran HE DESERVED TO LIVE I DESERVED TO BE HIS MOM WHY THE HELL DID GOD TAKE HIM DAMN HIM DAMN HIS HEAVEN DAMN HIS ANGELS BY MY SIDE I DONT WANT TO LOOK AT THE MOON AND SEE HIM DAMN IT I WANT HIM I WANT HIM SITING NEXT TOME YELLING AT ME MOM MOM GET OFF THAT DAMN COMPUTER AND COME SNUGGLE WITH ME. I feel so empty so lost so alone at least now after a long talk wiht cephas and dennis they at last know that is not that I dont love them its that theres this void in my heart cephas cant fill because he is already in my heart no ne can fill this void this heavyness that encompasses my exisitance. What am I to do i want so very much to help others but wiht all terrans bills etc I have to work but what can I do all i have ever been was a mom terran's illness and my having to advacate for him made me someone I got to ride on his coattails on his short journey now whose going to drag this old woman around and love it/ I miss his smell i miss his smile i have no joy i DREAD EACH MORNING OPENING MY EYES WHEN WILL THIS PAIN THIS ANGQUISH LEAVE MY SOUL. WHEN WILL I FIND PEACE. I HATE IT WHEN THEY SAY HIS SUFFEING IS OVER HIS BODY IS FIXED GOD DMANIT WHY THE HELL DOES GOD GET TO ENOJY MY SON NOW FIXED IF HES SO GREAT WHY DID HE NOT FIX MY SON SO I COULD ENJOY HIM HERE WHY THE HELL DID HE LET HIM BE SICK LOVING GOD OR HEARTLESS GOD RIGHT NOW I DONT KNOW WHAT TO FEEL BECAUSE I FEEL SO MUCH PAIN SO MUCH LOSS I JUST WISH TO GO TO SLEEP AND BE WITH TERRAN BUT I CAN NOT I HAVE TO WAIT TO SEE HIM AGAIN I JUST PRAY THAT DAY COMES VERY VERY SOON .





they say it takes a villiage to raise a child well my child taught the world how can i top that. every oen says i am strong but he was my strength



Kim

Sept 28 Yesterday at 1pm men from frapul funeral home gently laid my son to rest not in a cold casket not yet not for my son but in his own bed in his own room no tubes no wires just peaceful rest and I slept on the floor by his side finally I got sleep myself. How I will let him tommorrow for his funeral i dont know i dont know if i can let him go again but know i must i still cant figure out what i am going to do what purpose I can fill my life with that will fill the void this wonderful child left in my heart.

So many people filled this house yesterday terran would have loved all the attention my heart is so sad for my son each time I look at his sweet face I think where will i find peace when he's gone again.

kim

Sept 25 11:07 pm

I dreaded this day for all terrans days i dreaded this day the most the day when i would sit in a room wihtout him at my sid e and pick that box and make arrangements to send his body home to jesus its been a hard day a few months ago we talked to terran about this first he did not want ot die in a hospial and second not in miami eh did not want to go the morgue like he had seen on tv he did nto want lots of things so i sst down and reaserched just what to do to grant terran his final wishes.



first terran did not want to be apart from me and this i wanted as well so we had intened to drive terran home ourself i found the laws etc and knew i could do it legaly but in the end i failed terran we had planned whats called a green burial terran loved this idea we take him in our own car no casket the cementary was in jacksonville in a sancuary where you bury your own dead naturaly terrna loved the idea of a apple or orange tree being his headstone he used to tease that when we visited him we woujld take an apple or orange and exclamin "hey terrans tasting good this year" but alas that was not ment to be because i am stupid. but in a vast way things worked out for the best as i have found the sometimes do see if we had done as i planned we would have had to drive terran to jacksonville and bury him right away or embalm him which i dreaded.



But i did not relise just how many people loved him and wanted to say goodbye to him as well so the next best thing i wanted since was to do this the old way so this is whats going to happen in the next few days



Tomorrow terran will again be in the st pete times honoring him sptimes.com



second i was so blessed at finding a funeral home that would allow me to bring terran home for a few days thats all i wanted a few days where those who cant attend terrans funeral on friday can come here and spend private time with my son i did now know that a feat that would be but thanks to josh at funeral consumers alliance I was able to get my wish terran will be brought to my home on Wedesday sept 27 where he will be placed in his own bed no tubes no wires no suction pump just sleepig tendarly i can be with him for the wededay and thursday we can all grieve with him with no time limits placed on our grief. Then on friday morning terran again will be taken from my arms and taken back to the funeral home where he will be placed in his casket i picked for him today and we will have a memorial service for eveyone who wants to attend



Wedesday-friday you can visit terran at

11514 zimmerman road

port richey florida

we dont care what time of day you wish to come just call us and we will make sure you are given as much time as you need



friday 1 pm

terrans memorial service will be at

Faupel Funeral home

7524 Ridge Road

Port Richey Fl



following the service he will be taken to Trinity Memorial gardesn where he be buried

I cant express how much I loved this child he was my life he taught me more in his short life he gave me life before he came to us i was just a mommie a good one yes but just a mom with terran I was forced to learn things god most of the time i cant spell much less pronouce whats being told me it took me months to learn the proper way to spell hirschsprungs disease. then when i did understand all the doctors were telling me i made lots and lots of mistakes i trusted so doctors too much doubting my own gut feelings and if i can pass any wisdom at all to new moms it would be to trust your gut listen to that inner voice when making desions regarding your child. WIth terran I learned how to do so much that now i am not sure whats left for me what am I to do now that I dont have my son at myside its so hard to wake up in the morning when i hear his tendar cries in the night i picture him sitting on jesus lap crying for me I smell him ever so often that smell that all terran i cant explain it. I dont know how i am going to make it in this world with out terran right now i cant even bear to be in my car wihtout him in the back seat i look back to that empty seat that empty bed his toys his clothes he is every where.

I screwed up major when i set up terrans trust fund so many years ago forgetting to make sure to add final expenses to his trust and since i did that i can no use his trust fund to pay for his funeral I was so upset when I found out its not the banks fault its mine and my stupidity that cost my son as usual but tommorrow i have to find a lawyer or judge who can court order them to give the funeral home money to bury him right now so far I owe about 5 thousand but have not bought the plot in trinity yet so have no idea how much thats going to cost but i Know it will work out but am so frusted my heart is so broken and as usual i question god for giving me terran but not the means to take care of him.

Sept 25 2:30 am

12 hours and 30 mins ago my husband took my son from my arms to hand to strangers so he could fly home he died 18 hours and 30 mins ago my life ended I am so empty and so sad terran was my life my soul. After terran left me i could not bear being in miami anymore my older children had driven down to be with us to help bring terran home i had so wanted to drive him myself not wanting to have those awful empty arms and leave with out him but again i failed him i forgot to check laws and such so he had to go with a funeral home I was able to spear him the autopsy. We got home a few hours ago the girls went to pick up there children who were left with baby sitters. then it hit I am here in my home in my own bed but my son is not. HIs bed is cold and empty no more suggling in the morning or yelling at him when he forgets to change before climbing in to bed with me. It was strange terran fit perfect at my sid e since he has not grown for so long he was always a perfect fit. I thought i could go home but this house is too empty and my heart too broken to stay here much longer.

I have no reason to wake in the morning no smile no laugh no reason to go on with my life as he was my life while I have other children terran was special soooooooooo special I hate god for taking him from me. I was a good mom to him i made each day special i was blessed to have dr Reinstein to help back us up so even school was not a problem and i could keep him with me. what am i going to do with myself my life for 10 years has been all him all for him so much so there has been no me for a long time. I breathed to see him smile at a speical gift i gave him to see him light up with taht special smile when he got excited.. I cant bear to make arrangements for him I spoke to terran quite often terran did not want to go to a funeral home like mikey did he wanted to be at home in his bed I am working on makeing that happen so for the next three days i can sit by his side his daddy brothers and sisters all can be wiht him NO tubes NO tpn NO wires NO NOTHING then when i have to let him go again my heart will break a second time

Sept 24, 2006



Its the saddest day of my life terran xavyer zacarya tymothy edward dean robinstein died suddenly at 5 am in miami florida





Kim and terran

Well they say a picture is worth a thousand words I let this picture tell his story of a boy with such courage and such gumption that after a mear two weeks post transplant plus major sugery 8 days ago today my son walked on his own out of ICU while he is still a patient in icu its only because they dont have room for him on transplant floor maybe tomorrow this took such effort on terrans part seeing his incison is still open and only covered by a bandage and now an abdominal binder to help as well terran is well on his way to recovery



and the best part yet i bet your on pins and needles about my next set of news well you ready "TERRAN GOT TO EAT ICE CHIPS TODAY " YEP THATS RIGHT LADIES AND GENTLEMEN WE ARE ONE STEP CLOSER TO THAT GOAL OF LOBSTER DINNER WAHHHHHHHHHH HOOOOOOOOOOOO



KIM AND TERRAN Sunday Sept 17, 2006 11:30 am

Well sorry for not posting been a long few days. Terran for the most part doing well will having problems with fevers which we expected since he his wound culture came back postive for 3 nasty bugs. He is finaly off the vent but last night started to have alot of problems with oxygen sats this am we found out that his left lung has collasped and his right lung is threatening to follow suit. SO today we are being very agressive with cpt and oxygen and generous Alberol and pulmacort. They put terran on a Morphine PCA pump to better control his pain which has been a problem in getting terran to move more and with is huge incision that makes it even more difficult to move or be moved this should help alot now that terran will be allowed to control his morphine doseage.

We are very pleased with terrans care here in jackson lately the ICU and transplant team have been on top of every little bump we could encounter. I am so sad today because terrans daddy has to go home today and return to work he is so upset he does not want to leave terran right now he is over with terran in the icu he was crying so hard i had to leave. Its been wonderful having the whole family here (well cephas and dennis) but we have bills that need paying and that takes work on dennis part so we can have a home to go to when terran is fianly well enough to come home. He will be coming only on the weekends now so at least we are lucky in that aspect that we had transplant here in miami at least dennis and cephas can come down in pittsuburg that would have been impossible

Yesterday we got some more packages for terran as well as several cards one from Mason Dixon and Pat Crawford from Q105 in the tampa baby area Mason has an foundation called Mason Dixon's christmas wish fund inc. The Card had a check in it to help with day to day living expenses not covered by terrans transplant fund. I can not state how much we are apprciate all the cards letters money and such that have been blessed on our family we would not have made it this time if not for the generous support of people like all who have donated to terrans transplant fund and to our family. We are truly blessed by god and feel his presence all around us.

In christian love and support thank you for all who read these words and find it in their heart to fall in love with this awsome child who we call Terran

Kim and family

Sept 14 2006

long day terran is doing better today while he ran a low grade fever and selvaggi said if it goes up he will have to take terran back to surgery to wash out his abdomen again thankfully he only ran it a short time today and was fine the rest of the day. He was extubated late tonight at last he was so happy to get it out Dr Macky was there and terran called him over Dr M leaning close to hear what terran had to say and in a small whisper terran asked "dr macky can i go on pass to target" what a kid the whole team broke up and said "yep he's better barely of the vent and already wanting to go on pass" my son is so special in so many ways while he is in alot of pain and pretty quiet we are hoping its the versed they are weaning him from thats making him so cranky. Today he got two more packages and 5 cards each day i bring them to the icu his shelves in his room is full of boxes of presents from his friends he tells every one of his friends who send him presents he loves telling them (ok he points and i explain since his voice is very weak from being vented so much in the last ten days) HIs bed is full of power rangers (he even finaly got a pink ranger from one of his friends on the internet pink is his favorite because other then red) so keep praying things are looking up.

much love to those who call write and email and send terran cards and letters he looks forward each and every one and i am so appreciative of all the love the world has put on my small son. I can never thank every one enough for all that has been done for my son.

Kim and family

Wedesday sept 13, 2:30 am

after what was supposed to be a 2 hour surgery turned in to 6 and in a way it was blessed that terran did have the infection and they had to go in because they found two problems one potentially deadly problem

1st problem his jtube the limb of the jtube had come apart and died it was leaking in to his abdomen as well as his gtube had also come loose so both had to be removed so terran no longer has any tubes for feeds

2nd and most dangerous problem. when they were immobilizing terran's stomach Selvaggi looked behind his stomach and noticed saliva terran had a potentially deadly leak of his anastomosis this caused a more experienced surgeon to be called in to help dr selvaggi fix his throat Dr tzakis was in surgery himself so another was brought in to fix the anastomosis

its going to be a rough few days Dr Selvaggi said terran has a 50/50 chance of making it as of right now he is back on the vent they will try again to extubate him in the am but want him quiet for the night

he will not be able to have a feeding tube for a while the tubes he has in his nose will have to remain for several weeks he does have a feeding tube in his nose that goes to his jejeum for future feeds but will not be able to have a gtube or jtube placed for quite a while Selvaggi said that maybe terran will be able to eat enough I pray that happens.

Kim and family

Sept 12 2006 7:30 pm

terran is taken to emergency surgery due to a leak in his abdomen please keep him in prayer its going ot mean a long dangerous night for terran

To all

a special update a dear friend has set up an online auctionto benefits terrans transplant fund please visit the auction page where you will find links to the various auction items donated for terran. Please contact Johanna johannastp@gmail.com if you wish to donate other items for auction in support of terrans transplant fund.

Tuesday sept 12

aw memories it was 4 years ago today that i sat in this same room with terran that time it was waiting for him to come back from transplant today its looking in to his eyes and hearing his voice for the first time in a week, This am terran looks so much better while he still needs oxygen and has some nasty bugs in his wound he's acting like terran even demanding this am when i walked in to the icu "where have you been mommie" ah music to my ears his wounds are very leaky requiring lots of dressing changes to keep them clean and dry his nurse today is kim and she is great we also have a student nurse to keep on her toes they are doing ultrasonds of his adbomen to check for fluid pockets that maybe infected in this adbomen. He is still requiring lots of pain meds but if it were me and i had those huge incisions I would need a morphine drip not prn so my guy is just a wee bit more brave than his chicken mom. any how things are looking up getting better day by day i can almost see that light at the end of that long long tunnel

Kim and terran

Monday Sept 11, 2006 Terrans 4 year transplant anniversery

Today the icu team was successful at getting terran extubated and back on oxygen while his lungs are not the best this is a huge step forward. Dr. Selvaggi from pedi transplant team rounded this am and told me some of what to expect from terrans wound infection he's was going to preform terrans first scope this afternoon to make sure terran is not rejecting his new graft. IF all goes well he maybe going to the step down unit or floor in the next few days w
we still have a long way to go still on tpn and fluid but well on our way to recovery. The local bishop came by last night and gave terran much needed blessing its good to know when they are here to do such things for terran he even said that they maybe able to visit terran when he is back on the floor. I am forever grateful to all those who have had a hand in helping us though this difficult time.

kim and family

UPdate Sunday sept 10 2006 3 pm

Terran is doing better we had a talk with terrans surgeon this after noon who was able to answer alot of our lingering questions, we are so grateful to the transplant surgeon for working so hard to make the donor graft work seems there was a question but since terrans need was so desprite the doctor worked extra hard to try and make the donor graft work.

The reason terran has done so poorly since his surgery on friday was really a simple one they told me today that unknown to them terran had a severe wound infection and by opening him up again to fix his gtube and closing his abdomen caused that infection to become systmatic flooding terrans system with toxins.. that the reason he is on several powerful antibitoics to help control the infection.

The ICU team has been working hard all day yesterday and last night to get terrans lungs better and they have been successful at getting terrans satuations better they are doing albuerol and pulmacort via nebulizer as well as vigous cpt therepy on his chest and back to help loossen up the stuff stuck in his lungs so today he is much much better thanks to all their hard work

Thank you for all the prayers and calls i do appreciate all the efforts and all the prayers on behalf of my son, I cant wait for him to wake up its been a week and i really miss his voice mostly i miss him.

Kim and terran

to all sept 9th 10:50 am

just a quick update on terran who at this moment is not doing so hot, he is having major problems on the vent and both lungs have collapsed on the bottom. They are working hard on getting him better ventilated but so far the pressure of his abdomen being closed yesterday was just to much for his lungs Please keep him in prayer Its going to be a long day again.

Kim and terran

Friday Sept 8th 8:40 pm



Well its been a hard fought 48 hours terran has made alot of progress even gracing his face with a wee smile last night. Yesterday off the vent at last he was able to get up in a chair for a time while he slept most of the time in the chair at least it did wonders for his lungs. Our biggest concerns right now is terrans high blood pressure and sugar as well as platlet problem both they are working on to control. At least he gave me that bit of a smile last night. OUr next concern has been terran's sleeping alot and being very sad his doctors rounded this am and we discussed that terran is slipping in to a depression due to all these months he has been sick he has been so postive and upbeat but things may have been just too much for him and sleeping seems to be how he is coping with all that is going on.



Today he has surgery again to close his abdomen doctors were able to finaly close a huge gap in terrans abdomen while he is again on the vent tonight and his lungs are having alot of problems he receieved blood palatlets again today so far he has gotten 6 units since transplant almost every night he is requireing blood (so please if you can donate to your local blood bank we would be most appreciative if not to terran then just to restock supplies my son has used.) We are hoping to get him back off the vent in the morning if his lungs are better. THen we can work on helping terran deal with all that is going on around him. Its pretty scary for me I am worried its even more so for my wee son. But he's got lots postive going on for him as well when he finaly wakes up and gets going he has lots of presents sent to him from loving people so far we have recieved 5 packages from our friends at Guardian Society who have done a state by state package campain for terran as well has a few cards from his many new friends from around the world later this weekend i will be adding names to the card web site so if you sent a card or package you will know he got it. Thanks again this package and letters and cards will make him smile even if its just a wee bit

Wedesday Sept 6th 8:40 pm

Forgive me for not updating sooner. Dennis and cephas got here late last night I feel so much better with them here it allows me time to spend wiht cephas and dennis can sit with terran for a few hours so i can get some sleep we switch off now i stay mornings he gets afternoons and we are together with him at night. He's had a rough 24 hours lots of problems with blood pressure which he is on meds for now as well as very low heart rate. but today he finaly got extubated and is breathing on his own. Now we are struggling to keep him off the resperator he refuses to take deep breaths and is at great risk of collasping his lungs if he does not so now i get to bug him (see if i bug him he cries or yells at me forcing him to take a deep breath.) Tommorrow he is going to be in the st petersbug times again pasco section http://www.sptimes.com look under the pasco section it should be online after midnight tonight and for 24 hours after wards.

our next big day will be friday when they attempt to close terrans skin as you know terran is open right now due to swelling the doctors will attempt to close his skin then we can get terran up and moving better (right now he is very scared everything will fall out he is open from his nipple area to his pubic bone so its huge) any how I will try to update tommorrow as well.

keep us in prayer god is listening

kim and family

Sept 5 3pm

God is good terran is fighting he is still intubated and sedated but he knows I am near we can tell because he will squeeze my hand as well as his blood pressure and heart rate tells me he knows i am near. Terran has so much fighting to do but looks so much better this afternoon the doctors in the ICU at jackson memorial are right on top of every problem that pops up we feel so comfortable this afternoon i am back in tranplant house taking a long needed nap and catching up on email and phone calls. Most of the day I am with him its there i feel my best.

Kim and terran Click on these words till we return please enjoy this wonderful video made by omar aka merrick of the disney mgm power rangers in honor of terran his fellow ranger

Several people have asked to send terran a birthday cards and letters of encouragement here is the address where he can get them



terrans address for the next several weeks Since we will be
So far from home we will be staying at

Terran Robinstein in care of
Transplant House
room 717
1500 NW 12th Ave
Miami, FL 33136

Phone: 305-585-1500 Ask for room 717
Fax: 305-585-1501

if you cant wait to hear or read it here i can be reached via cell phone 727-237-6603