Archived Updates

December 12, 2005
Trey Allen was born in Lincoln. He weighed 9 lbs 8 oz.

December 16, 2005
Trey went home for the first time.

January 23, 2006
First day of testing at Children’s Hospital in Omaha.

January 24, 2006
Second day of testing and first meeting with the Pediatric Surgeon. It was here we first received a preliminary diagnosis of Biliary Atresia.

January 27, 2006
Trey was admitted to Children’s Hospital for the Kasai Procedure.

February 4, 2006
With the surgery ruled unsuccessful, Trey got to go home again.

February 16, 2006
We first met with Doctors at UNMC and the Lied Transplant Center.

March 9, 2006
Our second meeting at UNMC. Trey was put on Pregestimil infant formula at this meeting.

March 24, 2006
Website launched.

March 29-30, 2006
What a long two days. Jackie and I spent two days in Omaha officially meeting all the members of Treys medical team. We met with everyone from lab and radiology technicians to his actual surgeon. Essentially they went through everything that could/would happen once Trey is actively listed. They were very pleased with his weight gain (about 19 oz in three weeks) which means we get to delay a feeding tube a little bit longer! We just have to closely watch his weight over the next couple of weeks and make sure he gains enough. The ideal weight the surgeon would like to have him be is around 20 lbs (he’s at 12.5 now) so we have our work cut out for us. They also told us that locally they have a relatively short list for liver transplants right now and that Trey’s would, without question, be before his first birthday. That being said, they will meet once a week from here out and make determinations as to when to make him “active” on the list. There was a lot more but that is the gist of it. We are glad to be back home and have tentatively scheduled another appointment in Omaha for a month from now but of course that hinges on his weight gain. Pray for pounds!

April 3, 2006
KLKN Channel 8 in Lincoln did a story on Trey for the news.

April 4, 2006
Tickets to the Outback Steakhouse benefit lunch are now available. They are $10 per meal and need to be purchased in advance.

April 6, 2006
UNMC called this morning to tell us they have placed Trey on the active transplant list. This means that at any time forward, if a liver becomes available, we will have 4 hours to get to the hospital in Omaha for the surgery. I will know more about his score and where he is placed on the list more later but now is the time, if anyone is considering being a donor, to call UNMCs donor program at (402) 559-4076 or 1-800-LIVER 01.

April 10, 2006
We received the official letter from UNMC telling us that Trey had been placed on the transplant waiting list. He is fairly low on the list right now, based on his PELD score, but as we go further along, that will change. We had him weighed again at his four month checkup yesterday (along with his shots) and it appears that he has but on about 18 oz over the last 3 weeks which seems to be enough to delay a feeding tube yet again. His current weight is 12 lbs 13 oz.

April 23, 2006
UNMC has contacted us and said that they would like to move on to the next step in regards to living donors. They will be taking one person at a time and advancing them. This does not mean that the individual is going to be the donor but because of the amount of testing, lab work and evaluations involved it is best to only do one at a time. If at any point in the evaluation the person is deemed ineligible, they will return to the list of candidates and contact another. They have told us that they would like to move ahead with this step by the end of this week. If you are interested in being a candidate you would need to get in touch with an Evaluation Nurse at UNMC at (402) 559-4076 or (800) 548-3701 in order to fill out the paperwork and return it to them.

April 24, 2006
KOLN/KGIN Channel 11 in Lincoln did a story on Trey for the News.

April 27, 2006
Last night was the Knights of Columbus Spaghetti Supper in Grand Island and it was an overwhelming success that went beyond everyone’s hopes.

April 27, 2006
UNMC called us today and let us know that they have received enough applications for living donors in order to move forward. They will be evaluating one candidate at a time and either disqualifying them or advancing them further. If at any point they determine someone is not a match they will go back to the list and select the next candidate. If you were wanting to send in an application UNMC has asked that you hold off for now until they are able to process the ones that they have. If none of the current candidates make it all the way through the selection process, they will again send out the call for more applications.

May 1, 2006
KHGI NTV Channel 13 in Grand Island did a story on Trey for the News.

May 4, 2006
We had a Drs appointment this afternoon. Overall it was pretty good news. They are still semi-pleased with Treys weight gains. He is currently at 13 lbs 6 oz which still keeps him on the same curve. As long as we stay out of that lowest range of 5-10% we can avoid a feeding tube, although they tell us that its pretty much unavoidable at some point. His “numbers” were a little higher this week (bilirubin was 8 compared to 6 last time) and as a result they reevaluated his PELD score and he moved up just a couple of notches. As far as the transplant list is concerned, we learned today that as of right now, Trey is the only pediatric patient currently waiting on a liver-only transplant in the region. Essentially he’s both at the top and bottom of the list! What this means is that the Doctors can afford to be “choosy” when it comes to non-living donors. If one is not perfect (or nearly so) they can pass it up and wait a little longer for one that fits better. All in all it was a good visit and Trey continues to be his same happy little self.

May 5, 2006
Paper Tiger Shredding, West Gate Bank and Clocktower Shopping Center held their “Free Shred Day” to benefit Trey.

May 9, 2006
Trey weighed in today at 13 lbs 14 ozs. He will be five months old on Friday.

May 13, 2006
Firethorn golf course in Lincoln has agreed to host a 4 person scramble for Treys benefit.

May 13, 2006
Today was also Trey’s big sister Emma’s 6th Birthday. He attended her party to wish her lots of love.

May 17, 2006
Today was the Outback Steakhouse Benefit Lunch. Over 200 people came out to have lunch with Trey.

May 25, 2006
The appointment this afternoon in Omaha brought us both good and bad news. First the good. Trey is still doing OK. He is still feeling pretty good and continues to stay happy and smiling. That being said, his weight was serious concern on this visit. Right now he weighed in at 14 lbs 3 oz which is only about 5 oz in 15 days when they really want him gaining at least 6 ozs each week. The idea is that the bigger Trey is going into surgery the more healthy he is and therefore the less chance there is for complications. Although 20 lbs is not mandatory, it is a goal that the doctors are strongly aiming for. After some discussion though, the doctors agreed to keep him off the feeding tube for one more visit in hopes that we might be able to keep him gaining on his own. On Monday, Trey had his labwork done and the results were sent in to UNMC. Pretty much everything was “up”. His bilirubin numbers (which are a key indicator) went from 8 to 10.7. In light of the weight issues and the increased bilirubin levels they rescored him and his PELD score more than doubled to 13 from a 6. As a result of all this, they have decreased the time between clinic visits and now want to see him every two weeks at UNMC. One symptom that we have been asked to watch for is any fever or anything that resembles a cold, as those are early signs of more serious problems. They are still examining the initial volunteers for living donors and of course, waiting for a non-living donor.

June 8, 2006
This afternoon we had what might have been our last pre-transplant appointment. The appointment started off well with Trey tipping the scale at 15 lbs 4 oz. That’s about a pound over the last two weeks and that made his dietician (and mom and dad) very happy. From there we learned that the living-related donor that they are working with is progressing very nicely. In fact, it may be as soon as tomorrow that we hear if they are an official match. If that proves to be true then the transplant could be scheduled for as soon as two weeks. Of course if a non-living donor should become available at any time before then we would still get the call. As you might guess, there are a whole range of emotions right now. The only “negative” news we received was that Trey has developed an umbilical hernia. This is not uncommon in BA babies and its a simple procedure they will perform at the end of the transplant. So all in all, it was a good day and we’re hoping and praying that tomorrow is even better. Stay tuned to the website for more details as we get them.Also, a reminder that the folks in Columbus have planned what sounds like a fantastic event for Sunday. If you are planning on coming, we’ll see you there.

June 9, 2006
The Columbus Telegram wrote an article about Trey and the upcoming BBQ.

June 11, 2006
Today was Trey’s Benefit Bar-B-Que in Columbus. Over 350 people, including some bikers, were there for the fun.

June 12, 2006
It’s official! Trey’s aunt Christa is a match for Trey and has volunteered to be his angel. Unless a non-living donor should become available before then, the transplant is scheduled for July 6th. That’s only 3½ weeks from now.

June 13, 2006 At 6 months old, Trey weighed in at 15 lbs 7 ozs which is actually upward movement.

June 28, 2006 Colleen Kenney with the Lincoln Journal Star wrote a fantastic article about Trey for the paper. You can read it here.

June 28, 2006 UNMC informed us today that Christa’s surgery will be at 7:30 a.m. and Trey’s will be at 10 a.m. on Thursday the 6th. They project it to take about ten hours for both. After coming out of surgery both of them will be in intensive care for “a couple of days” for recovery.

June 29, 2006
KHGI NTV Channel 13 in Grand Island did an update on Trey for the 6:00 News.

July 5, 2006
One more day to go. We are heading to Omaha today for all the pre-transplant testing. We’ll be there all day and I’ll update this space tonight with the “final” word. They can still call this off and/or postpone it if conditions aren’t exactly as they want them to be. They will even call it off during surgery if they come across something unexpected, either with Christa or in Trey. If all goes well, Christa’s surgery will begin at 7:30am tomorrow and Trey’s will start at 10:00. If there are no complications, it will last about 10 hours and so we hope to know something by 5:00pm or so. Thank you all for your well-wishes and prayers. We are about to put them to use.

July 5, 2006 5:00 p.m.
Well, so far so good. Both Trey and Christa checked out OK today so the surgery is going as scheduled. Unless they uncover something during surgery tomorrow of course. First appointment today was a blood draw and I think the little guy is getting to be an old pro at it already since it only took a couple of minutes. After that he had a chest X-Ray. Then we met the transplant nurse who explained more to us about what tomorrow would be like. Then we were able to check into the hotel here at the hospital. The room information is listed below. The last stop of the day was at anesthesiology where they gave us more information concerning timelines and what not. It wasn’t until this appointment that it really sank in and seemed real. Tomorrow will be a very different day. Well, that’s it for tonight. I will update this space tomorrow as I can. At a very minimum I will update tomorrow night with results.

July 5, 2006 10:50 p.m.
We just received a call from the transplant coordinator that Trey’s transplant has been “bumped”. Apparently, three adult cadavric donors came available today and, for obvious reasons, those take priority over living related donors. They told us that they are going to try to reschedule for Friday (same time, same place) but no guarantees. They told Christa that even if it isn’t Friday that it would definitely be this weekend. So, for now, we are going to stay put in Omaha, now we just have an extra day to spend with Trey and the girls doing something fun.

July 6, 2006 10:45 a.m.
We are on for tomorrow, the 7th, same time – same place.

July 6, 2006 6:00 p.m.
KOLN KGIN Channel 11 had an update on Trey and Christa on the 6:00 News.

July 7, 2006 8:15a.m.
Christa went onto surgery about 30 minutes ago and we are headed to the operating room now. So far so good.

July 7, 2006 11:00 a.m.
Everything got off to a bit of a late start this morning but the Doctors just took Trey back in for surgery. Everything is going very well with Christa and her surgery is progressing perfectly. Sometime in the next hour they will actually transfer the portion of her liver into Trey. They will update us every “couple of hours” to let us know it’s going OK. I will get as many of them here as I can.

July 7, 2006 12:35 p.m.
Dr. Sudan just let us know that Christa is out of surgery and has been moved to recovery. She’ll be there for a couple of hours before moving to intensive care. Her side of the surgery went very well with no complications. She also let us know that they just made the initial incision in Trey and would be transplanting the liver soon. Everyone is still doing well.

July 7, 2006 2:00 p.m.
We just got a call from the operating room to tell us that they are presently sewing in Trey’s new liver. All is going well. Christa is still sleeping in the recovery room and waiting to get a room in ICU.

July 7, 2006 3:15 p.m.
Dr. Langnas just came out and told us that the transplant is done! Everything went very well and Trey should be in a room within the hour. As you might guess we are amazed that it only took 4 hours compared to the 10 they told us. He said everything fit very well and there were no complications.

July 7, 2006 11:30 p.m.
Everyone is doing well. Christa is in a fair amount of pain but has some good drugs to help cope. They hope to have her up and walking tomorrow. Trey is still on heavy sedatives. The nurses want him to sleep really well tonight and they will take him off of the ventilator and sedatives tomorrow – hopefully. I have a ton of pictures to post but no way to get them off the camera just yet. I hope to have them up here by Sunday.

July 8, 2006
Everyone is doing very well. Christa has been up out of bed moving around a little. They have taken out the tube in her nose although she is still in a pretty fair amount of pain. Trey is also doing well. Around noon the nurses removed his ventilator tube and he is breathing normally and on his own. We are very happy to report that his toes and feet are already pink and the whites of his eyes are considerably more white today than they were yesterday. Special thanks to Laurie from Liver Families for spending the day with us and showing us all the ropes.

July 9, 2006
Everything moved ahead nicely for both Christa and Trey today. Christa was up moving around more although she is still in a lot of pain. Trey was more awake today although very uncomfortable. He cries a lot but seems to settle down when Jackie is holding him. He did get both IV’s taken out of his arms today and the catheter removed as well so those are very good steps. His “liver numbers” are stable and they hope to see them start to drop tomorrow. His bilirubin is waaaay down to a 2. The highlight of his day came late this afternoon when the nurses wheeled his aunt Christa into the PICU for a visit.

July 10, 2006
Good steps forward today. Christa continues to improve and was in less pain today than yesterday. Mashed potatoes were the first real food in her diet since Thursday night. Trey also keeps making improvements. He was cleared today to have a bottle of Pedialyte but wasn’t too interested in it yet. His liver numbers keep heading downward and his bilirubin clocked in at 1.5. He has begun to swell quite a bit and his pink little toes are puffy pink toes now. There is talk that he may start some medication tomorrow to help reduce that but we’ll see how it goes. In a nutshell, I asked the surgeon, who was on rounds this morning, of all the things that concerned him, what was his biggest concern in regards to Trey right now. His response…“I don’t really have any concerns at this point, he’s doing very well”

July 11, 2006
More improvement for both donor and recipient today. Christa’s pain is finally lessening and there is talk that she may be dismissed tomorrow. Trey had both the tube in his nose and the drain in his side pulled today. The swelling from yesterday has gone down but with the drain removed they do expect it to go back up. The Pedialyte did not go over well and after many unsuccessful tries they decided to let us feed him the way he is used to. That went over like gangbusters and we haven’t hardly been able to keep his bottle full enough since. At this point everything is going absolutely perfectly and we could not have asked for better successes.

July 12, 2006
Great news! Christa was released from the hospital today! She decided to head back to Lincoln and will be at our house for more recovery. Trey is also doing well with one small concern. His breathing is a little irregular so they took a chest X-Ray today to see if there is any fluid in his lungs. We hope to hear something tomorrow but if they find any the they will give him some breathing treatments to clear them up. We are still in the PICU until it gets to normal. Other than that his liver numbers continue to fall and his bilirubin is down to 1.2.

July 13, 2006 3:00 p.m.
We have run into our first bump in the recovery road. The X-ray from yesterday revealed a “bulge” in Trey’s intestine. The Drs are not sure exactly what is causing it so they are going to take him back into surgery to check it out. It may be something as simple as gas or fluid or something as major as an infection or perforated small bowel. They won’t know until they get in to look around. The surgery is scheduled for today at 5:00 p.m. We have been told that it should take around an hour to complete the examination and presumably a bit longer to fix it…if they find something to fix. We will try to keep everyone posted as we know more.

July 13, 2006 6:00 p.m.
About 15 minutes ago Trey went into surgery. It is still projected to take about an hour.

July 13, 2006 6:45 p.m.
Dr. Botha just met us in the waiting room to give us the good news that Trey is already done. Once they got a look inside it was determined that it was fluid that is causing the swelling. Unfortunately for his comfort level, other than a “washout”, there isn’t much they can do except give him a diuretic which will help him “pee it off” – so tonight will be a long one. They did take a culture of the fluid to see if it was infected and they started him on a couple of antibiotics just in case. He did tell us that if the swelling sticks around that he may do another “washout” in a couple of days. The silver lining in all this is that Dr. Botha got to take a first hand look at how the transplanted liver was doing and he said it looks fantastic. The liver is doing well and the small perforation in his intestine is not leaking and looks great as well.

July 14, 2006
Last night was a long one. Trey was very fussy and crabby all night. It seems like he would sleep for 2 minutes and suddenly startle awake and cry for 30 seconds then fall back asleep for 2 minutes. Not much seemed to make him happy and we weren’t sure what exactly was causing the problems. Fortunately, we found out this morning during Rounds. Every patients need for anti-rejection medication is different. The only way to know how much someone needs is literally by trial and error. Consider last night an error. Trey’s Prograf (medication) level was at 37. One of the side effects of too much Prograf is irritability. They have since skipped tonight’s dose (and tomorrow mornings as well) and he is much much calmer. They also started him on a diuretic today to help with the swelling. So far that is going well but it will probably take several days to see a noticeable difference. Additionally, the culture from the fluid removed during surgery did not “grow” anything so the worry about an infection is drastically decreased at this time. The highlight to Trey’s day was getting a new view. Around 8:00 they decided to move him to a quieter part of PICU and so he got a new – much improved – room. Christa also got to make a return appearance today to see the Dr. and spent the afternoon resting in the hotel. She is doing better and will likely head back to Lincoln tomorrow.

July 16, 2006
We’re back after a brief outage. It appears that there are so many folks out there checking in on Trey that we went over our bandwidth limit but thanks to the good folks at Nebraska Digital , we are back up with some room to spare.

Trey’s condition is still improving in areas and remains a concern in others. His liver numbers continue to decrease (bilirubin is now below 1) but his white blood cell count is slightly elevated. This can be caused by some of the medications he takes or it could be caused by an infection. Coupled with that, Trey has been running a slight fever today. That is never a good thing as it is also a sign of possible infection. The next day or two should tell us more. His high heart rate and extremely rapid breathing also remain a concern. His FK level (Prograf) is down around 11 but he is still pretty testy so it’s likely going to need to come down a bit further yet before he really gets comfortable.

July 16, 2006
Trey’s Benefit Golf Tournament was held last Monday.

July 18, 2006
Good news to report today. Trey is eating much better and has been switched from that nasty Pregestimil to Enfamil with Iron. As you might guess, he is a big fan of that change. He has also been more alert last night and today a has been smiling (first times since transplant) all the time while playing with his toys. He is also being weaned off of the pain medication he was on so we hope that has something to do with his alertness as well. The breathing and heart rate are still high but as he eats and plays more, they expect to see that come down. His fever has not returned and they are treating his staph infection with antibiotics. As for us, we have made the move to the Ronald McDonald House just a couple blocks away in hopes that it’s more fun for the girls. There are all kinds of toys and playground kinds of things for them to do there.

July 19, 2006
Not much to report today. Trey’s WBC dropped to normal levels with this mornings lab results. The fever has not returned. Dr. Langnas told us that Trey’s liver is functioning perfectly and acts exactly as a liver should.

July 22, 2006
Big news!!!!!
We found out yesterday that technically Trey is no longer in PICU. He is listed as “overflow” which means that the hospital is full on the general pediatric floor and so we stay in our current room but not with all the “stuff” that goes along with being in intensive care. Probably one of the biggest things was the fact that he is no longer connected full time to any machine. That means we are able to walk the halls at will. Trey even got to go outside today for the first time in over two weeks!

But wait, that’s not all, on this mornings rounds Dr. Sudan made the decision to release us to “Cooperative Care”. What this means is that Trey will still be considered an in-patient of the hospital but that we will all be staying in the Lied Center (the hotel that’s part of the hospital) as a family. The Drs. will still make their daily rounds and nurses will still come by to check vitals every four hours but all his medications will be up to us. It’s kind of a middle ground between being in the hospital and being sent home. She made even more allusions but we’ll save those for another day. At this time, the nurses put us on the list to move tomorrow afternoon. I’ll let you all know more as I find out.

It kind of goes without saying that Trey is doing very very well. His liver numbers are all normal and he doesn’t seem to mind all the meds that we have to give him (8 of them). He smiles more than he cries and can’t seem to eat enough. While he is still very much underweight, they tell us that it will come along just fine. One other thing that we have found out, fortunately NOT the hard way, is that because of all the medications and whatnot, Trey’s bones are very fragile and can easily break. This too will pass but for now we are being extra careful.

July 24, 2006
We made it. After a short delay of a day we are in the Lied Center. Trey had a rough night Saturday night with little sleep and general fussiness so the Drs. decided to keep him a day longer and watch over him. They drew some blood for cultures and took a scan of his abdomen. Fortunately everything appeared ok and we got the green light to move so we spent today moving. Tonight we got our first taste of what home life is going to be like. We are now responsible for monitoring everything he takes in and puts out. We administer all of his medications. We record his blood pressure, respiratory rate, heart rate, etc etc. Thankfully that stuff (except the meds) will only last as long we are here.

July 26, 2006
Wow! What a difference a week makes! Believe it or not, after only three weeks, we are going HOME! The Drs. decided that his liver numbers have been stable for all three weeks and we have spent a couple of nights in Co-op so it was time to dismiss us from the hospital. Up to this point we had been told that we would not be allowed to leave Omaha and to plan on at least a month here but, after some deliberations, they decided that Lincoln was close enough in the event of an emergency and that the benefits Trey would get from just being home outweighed the risks. One other factor was that we would be staying at the RMH along with 19 other families and the possibility for exposure to viruses would be higher. Now, that doesn’t mean we are done here. One of the many requirements for our parole is that we have to return to Omaha for weekly clinic visits and have labs drawn three times per week. An easy trade in our opinion.

July 27, 2006
Our first day home. Everyone has been on such a high today. The girls haven’t hardly left their rooms in an attempt to play with every toy they own. Trey has smiled more today than he ever has and is rolling over and over the living room (something he wouldn’t do for the physical therapists at the hospital) and acting like nothing ever happened. Mom and dad haven’t been so lucky. After taking Trey to his first lab visit this morning it has been a non-stop job to unload the vehicles and get everything unpacked. It seems like we came home with about double what we went with and that’s not even counting all the stuffed bears, frogs, giraffes and other assorted zoo animals. One thing we did not come home with is Trey’s weight. He went into surgery weighing a bit over 16 lbs and came home at 13.6 lbs. That’s only about 4 lbs over his birth weight. Fortunately, he had a great day eating and we hope to see some weight gains in the near future.

Quinn Schuler with KOLN/KGIN Channel 10/11 called us this morning and asked to come do a follow up at home. We would like to thank Quinn for doing such an excellent job of getting Trey’s story out and staying in touch with us from start to finish.

August 3, 2006
Today was Trey’s first post transplant clinic visit. We went in with a little apprehension because we were slightly concerned about what we saw as an upswing in his “liver numbers”. In the end we worried ourselves over nothing. Dr. Botha saw Trey and said that he could not possibly be doing any better than he is. He had absolutely no concerns. His weight was gaining, his numbers were good and his incision was healing. All-in-all Trey received a gold star for his one month post transplant check up.

August 6, 2006
We had a bit of a nervous weekend. Friday afternoon we got a call from the Coordinator at UNMC who told us that, after re-looking at Trey’s lab’s from Thursday (the one’s that Jackie and I were worried about), they were concerned. It seems that his “liver numbers” were steadily creeping up and they wanted to do a biopsy to be sure it wasn’t rejection. Doing a biopsy would have required us to go back to Omaha on Sunday, check into the PICU, and spend the night – which was something none of us looked forward to. Before taking that step however, they wanted us to do one more lab on Saturday morning and take a look at it. Fortunately, his ALT, AST, and GGT numbers all dropped. Two of them dropped down to where they were on last Monday and the other fell about halfway to that point. Either way, the decrease was enough to keep him out of the hospital. We have labs drawn again on Monday morning and they’ll examine those closely again to be sure, but for now it looks like they are falling back into place.

So, instead of the hospital for Trey we were able to make the trip up to Norfolk to visit Trey’s newest cousin Nathanial Hayes Buettner in the hospital. He was born to proud parents, Daren and Tracy, around 11:00 Friday morning and weighed exactly 7 lbs. Both he and his mother are doing well and everyone went home on Sunday happy and healthy.

August 12, 2006
Well, no news is good news, right? This week has gone largely uneventful. I have never been more grateful for nothing than we are this week. All of Trey’s liver numbers continue to drop. No fevers. Gaining weight. Other than some difficulty with teething, he has been the model of health this whole week. Here’s to hoping it is only the beginning.

August 29, 2006
We’re back! After a rather lengthy shutdown thanks to spammers, we are back up and running. Thanks to Nebraska Digital for all their hard work.

Our clinic visit a week and a half ago went exceptionally well. Trey is continuing to make improvements and his liver numbers are stable. He is gaining weight and now weighs more than he ever has. At last check he tipped the scales at 16 lbs 14 oz. The nutritionist even called him a little piggy! He has developed very well and while he isn’t crawling yet he does “scoot” everywhere and is getting tougher to keep up with all the time.

In another matter, Trey has another new cousin. His name is Carter James and he was born today at 12:30 to very happy parents Uncle Rob and Aunt Kelli and sister Mya. Carter weighed 7 lbs 15 oz and is doing very well.

September 7, 2006 Today marks exactly two months since Trey had his transplant. Wow. Where has the time gone already? Today was also his clinic visit in Omaha. Nothing but good news to report. He weighed 17 lbs 11 oz and is in the 10th percentile for weight. His height is moving along but much slower because of the Pednisolone medication (a steroid) which has a side effect of slowing growth. The good news is that when they take him off of it at 6 months he should catch up over time. All of his liver numbers remain stable and they are constantly amazed at how well he has done in the five short weeks since we left the hospital. So well in fact that they have not scheduled his next clinic visit until a month away.

Another thing to note is that sometime in the next week, we will be taking down the Guestbook portion of this website. The spam is just coming in too fast to stay on top of and it has a tendency to lock me out.

So, if you haven’t signed it and would like to, (we’ll save this whole site for Trey to read someday) you will have to do it soon.

September 19, 2006
Trey had his 9 month checkup last week and got high marks from his pediatrician. He weighed a whopping 18 pounds and is in the 25th percentile for height. Once he gets off the steroid at about 6 months post transplant his height should shoot up quite a bit.

October 6, 2006
Wow. So much has happened in the last two weeks that I don’t know where to start. Trey is now pulling himself up on his own and we are just waiting and watching for him to take his first real step. He finally cut his first tooth and is working on a second one. Today was his clinic visit day as well and we got all kinds of great news. For starters he weighed in at 19 lbs 6 ozs which is a full 6 lbs more than he weighed just two months ago. In fact, he actually fell below the growth chart in August and has since moved back to 50% on height and 25% on weight. We met with Dr. Grant again this time and she seemed very pleased with his progress. We have been OK’d to stop two of his medications and scale back another by half. Additionally, she sees no need to have us come back to clinic for TWO months! Obviously, we are very pleased about that. The only word of caution we got was that, as we move into flu season, we be very careful about where we take him and who he comes into contact with. So much so that our whole family has to go get flu shots at the end of the month for a little added protection.

December 12, 2006
In honor of Trey’s first birthday (today) the new redesigned website was launched.

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