History

Friday, April 23, 2010 12:39 AM CDT

It's weird how when the month of April comes around everything outside is in full bloom and everything around me seems so full of life. The trees, the flowers, the people and the weather is all to beautiful, but for me this month sympolizes darkness. For this month is when my son Caleb flew to heaven. Maybe that's the irony of it all. Maybe instead of feeling sad on the inside, I need to look on the outside at everything around me and remind myself that Caleb is now in a place that is beautiful everyday. And maybe everytime this month comes around I should feel a sense of happiness that he is now not only pain free but he will always be watching over me. I just miss him dearly and wish he was still here so I could give him kisses and eskimo kisses and butterfly kisses.. Something that we did daily together..:~(

Please remember to wear your purple shirts in memory of Caleb on April 29th (the day of his passing) and May 4th which would have been his 8th birthday. Thank You to all of those who continue to check in on Caleb's site and thank you to those who have come upon this site by pure fate and take the time to sign his guestbook. Take Care

Sunday, November 22, 2009 6:28 PM CST

Happy Holiday's to all! I am in the process of updating Caleb's website and just wanted to let everyone know since I have had a few people ask me what happen to the slide show. I'm trying to make a book out of his site but I am having issues. All my pictures that I took of Caleb were taken with a small resolution and if I get the book printed out then all the pictures will be blurry..why does it have to be so frustrating?..Can't believe that the holidays are back yet again...Things have been going well on my end. I am going back to school and just got my Esthetician's license a few months ago..I have a wonderful boyfriend and my nephew Sasha is going to be one years old on December 10 and ooh how I wish Caleb was here to meet the Sash Man....Seems like lately I spend most of my free time shopping which I know, doesn't surprise most of you but I can't stop thinking about what Caleb would have wanted for Christmas this year. I still sometimes find myself looking down the toy aisle as if im looking for that one gift that would light up his face on Christmas day..I do dream of him often, so at least I still get to see his precious face from time to time..Well just wanted to say hi and hope that each and everyone of you have a happy and safe holiday!

Tuesday, April 22, 2008 10:08 PM CDT

Just wanted to let everyone know that today between 6-8p.m. my mom is releasing 2 butterfly's in memory of Caleb with the Grief Group at the Methodist Church in the Woodlands. Anyone is welcome..I am going to try to make it, but I have to give a presentation for school and take a test. I know.. bad day to do those things, but I know that Caleb will give me the strength to get through them. Let me know if you want to join..

Well a week from now, it is going to be the year anniversary of Caleb's passing. I am not really sure on how many people still check in for updates but I wanted to let you know that on April 29th we are all planning on wearing something purple in memory of Caleb. Also Caleb's birthday is May 4th, so that day is a purple day also. I will also be letting some purple balloons go on those days as well. Please feel free to join in on sending a purple balloon to heaven. Those of you who don't know, Caleb's favorite color was purple. He always had to carry around a purple marker or purple car where every he went. When he would color, he would never use the purple and if I tried to make him, he would get all mad. He was such a funny little boy. I think he would have grown up to become a little obsessive compulsive. Things always had to be just the way he wanted them. I remember when he would eat those mini rice cakes and if one of them was flat on one side, then he would just put it back in the bag and no way eat it. Or the time when he was so obsessive with numbers and letter. He could care less about all the cool toys he had, he just always wanted to play with letter and numbers. My mom had gotten him these flash cards with everyday things on them with the name of the object on the back and he would sit for hours just going through the cards. He could tell you what the object was just by reading the word. Not really sure if he had them memorized or could really read. But some of them where really funny to hear him say, like sushi, croissants, and pastries. We always laughed and said what 4 year old knew about sushi..These are all great memories that I will hold for as long as I live. I hope that this update finds you all doing great. PLEASE REMEMBER TO WEAR PURPLE ON APRIL 29TH AND MAY 4TH. Thank you in advance...

Wednesday, April 2, 2008 11:43 PM CDT

Caleb's year anniversary of his death is slowly creeping up on us. I can't belive that it's almost been a year since he left. You never know where time goes, it's like you blink and boom it's already been a year. Things have pretty much been the same for me since I last updated. All I do is work and go to school. I just try to keep myself busy because if I stop for one moment then I start to get pretty down. Well that's about it from me for now..

Also PLEASE keep our dear friend Tyler in your prayers, he received his gift of life and has been having a lot of complications. He is such a little fighter and I know he will pull through this hard time.

Take Care,
Korri

Monday, February 4, 2008 8:39 PM CST

Well Today is Caleb's 5th year anniversary of his small bowel, liver and pancreas transplant. I visited his grave and tied green and white balloons around the vase on his headstone and I let a green and purple balloon go up to heaven. I attached a small message to the balloons letting him know that I miss him dearly. I also sent a green balloon up to Caleb's donor and I stayed and watched the balloons until I couldn't see them anymore. It's been really hard for me lately without him here. I just miss him so much. We used to do this thing where we would give kisses, then eskimo kisses, then butterfly kisses then hugs and end it with one last kiss. The other night I was laying in bed and I was wishing that I could just do that routine one more time with him. And then my wish came true. That night after I fell asleep, Caleb came to me in my dreams and I was able to give him all those kisses. I felt much better when I woke up that morning. I think through all this, night time is the hardest for me though. Caleb used to sleep with me and would have to put his fingers through my hair in order for him to go to sleep. I can remember just loving the way the noise sounded when he had his paci in his mouth. Or the way his hand looked when he would put it in my hair. And there was always some type of pump making noises through out the night. We never had a quiet sleep. Especially through all the hospital stays. Now things just seem so quiet at night. But looking at it in a positive light, I get to see Caleb in my dreams.....

Please keep Caleb's donor family in your thoughts on this day as well. If it wasn't for them making the decision to give life, then we might not have had 4 ½ years with our bubba. So thank you to them and keep them close to your hearts...

Thursday, December 13, 2007 11:58 PM CST

Gosh, I didn't realize that it had been exactly 3 months since I last updated. Caleb's headstone finally came in yesterday. I went by there today and it looks really good. Thomas the train came out great. I wanted to ad a little Christmas touch, so I put a Christmas tree in the vase and it looks really cute. I just hope that it lasts out there in this yucky weather that we have been having. If any of you are in the area and want to stop by and see Caleb's headstone it is out there now. You can't miss it, it's the only one in the back right corner with a little Christmas tree and a train on the headstone. The address is
Forest Park the Woodlands
18000 I-45south
Conroe, Tx 77384
It was really hard when I went to the store today to get the things to decorate it. I just found myself looking at all the toys wondering what Caleb would have wanted this year. Maybe spider man, batman or would he still be loving Thomas. The holidays are always so hard, but I think Christmas is going to top them all. He loved to open presents and I think I would take about 500 pictures. Last year he got out of the hospital on Christmas eve just in time to spend it at home. And even though he didn't feel good he managed to crack a few smiles. His favorite thing was a Go Diego movie and a marble maze. I wish I was going to have this years memories as well. But I am sure that he is in a place where everyday seems like Christmas. I am sad to report that Caleb's Great Granddad passed away on November 30. He was a great man and will be forever missed. So now Caleb not only has his Grandpaw Claude watching over him, he now has his Great Grandad as well.
On another note, I just finished school for the semester and actually really enjoyed it. My professor was great and ironically he had a transplant. He gave us lots of positive outlooks on our future. Something that I really needed to hear.
Also I am moving at the end of the month, so when I get my new address I will be sure to email it to everyone. Well that’s about it for now. Take care and have a very Merry Christmas and a happy and healthy New Year.

Wednesday, September 12, 2007 10:23 PM CDT

I just wanted to update and let you all know that Caleb's headstone is finally almost done. The women that was helping us get it ordered went on a leave of absence and never bothered to tell us or never let any one else at the funeral home know what was going on with our order. So we pretty much had to start from scratch.. Very annoying.. Anyways it should be beautiful once it's finished. We decided to put the face of Thomas the train on the headstone, so we had to get the ok from Hit entertainment. Also since my mom always called him "The Sweetest boy in the world" we are putting that on there as well. Other than that things are going okay.. I am working and going to school part-time. I am leaning towards nursing so I have to take a few prerequisite classes first before I can apply for nursing school. It's pretty hard going back to school, but I know that Caleb(my angel) will pull me through it. There's not a day that goes by that I don't think of him. I am a big believer in signs and I have been noticing them a lot lately. For instance, every time I drive by Caleb grave, a song comes on the radio that we played at his funeral. Or the time that we saw Brad Paisley at Jay Leno. Which Caleb's favorite song that we used to dance to was by Brad Paisley. Or the other night I was out with friends doing Karyoke and the first song that I heard when I got there was a song that we played at the funeral. I know it is Caleb way of telling me that he is here and watching over me. I think everyone has signs, wether it is from God or a loved one from up above, it's just a matter of opening your eyes wide enough to see them. I really hope all of you are doing well and thank you so much for still checking in on our family....Take Care

Tuesday, July 17, 2007 12:51 AM CDT

We are finally almost finished with designing Caleb's headstone. Jared and I want it to be perfect and the funeral home has been so good with working with us. I think it is going to get ordered this week and it takes 3-5 weeks for it to come in. Other than that I am getting really excited for my trip to L.A. It is a much needed vacation and I hope that we all have a great time. We are going to Disney Land at some point during our vacation and I can't wait for that. I have mixed emotions about going though, because I was going to take Caleb on his Make A Wish when he was 5. But I know that he will be looking down upon us and enjoying every moment as we do...

Tuesday, July 3, 2007 12:24 AM CDT

I have been sitting here for awhile now trying to think of what I could write about since there is no more... hospital stays, central line talk, labs draws, Pittsburgh trips, surgeries, clinic appt's, and most of all no more cute things to write about that Caleb would do. My life is pretty boring now. My mom, sister and I are going to L.A to stay with my Aunt at the end of the month, so that will be fun, since I have never been. I haven't really found the path that I am suppose to be going down yet. But, I know for sure that I am going to school in the fall and try to get into the nursing program. I have been looking for a job, but since I have not worked in 5yrs, it has been difficult finding one. A lot of companies require experience, which I do not have. I would like to get my foot in the door and maybe work in a medical clinic of some sort. So hopefully something will pop up soon. Actually, if anyone knows of anyone who is hiring, please fill free to email me at the address below. Thank you all for continuing to check in on Caleb's page. Have a great 4th of July!!

Monday, July 2, 2007 6:14 PM CDT

Hello,
As you can tell I am working on Caleb's page.. Just trying out different things..So it's not really done yet. I will post more when I get it finished..

Friday, May 25, 2007 5:29 PM CDT

Well things have been pretty rough around here since the loss of our Caleb James Rasbeary. It's so quiet in the house that I can hear myself breath. I am at peace with Caleb being gone, because I NOW KNOW that he is okay. I am able to say that I NOW KNOW, because I had a dream about him a couple nights ago, we were all at Caleb's funeral and I was trying to take a photo and the lens would not focus, so I decided to walk up to the casket and when I tried again looking through the lens, it went into focus and I noticed that Caleb was breathing. He then sat up in the casket and Jared ran up to him and took him somewhere. After a minute of trying to catch my breath I looked out this window and there he was, playing with hundreds of children. So free, so happy, so normal. I can remember thinking that I had to get to him so that he wouldn't get sick from all the germs, but then I didn't care about that anymore and just watched the kids so full of life....playing! I have dreamt about my baby three times now, but that one allowed me to be at peace. And I thank Caleb for that. Also, I wanted to share with you all a small poem that I started writing from Caleb's prospective. I had started writing it before Caleb's death and now I am able to finish it.

What is normal?
I do not know
I can not taste it
I can not smell it
I can not feel it
will I ever know?
no more pain
no more tears
and most of all no more fears
happy faces, silly places
no more with the uncommon cases
what is normal?
will I ever know?
living life day by day
never knowing where my head may lay
this is a game I have to play
and just hope it will go away
so I ask again
What is normal?
I finally now know
I can taste it
I can smell it
I can feel it
I know!!!!

Thank you to everyone that continued to pray for Caleb and us during this hard 5 years. I am so greatful to have so much love and support from all of you. You made it possible for me to keep my head up and continue to be so strong. We will never forget any of you. I ask for your prayers on guiding me to the right path. I feel as if there are so many different roads in front of me and I am not sure on which one to take. Thank you again for being such special people.

Monday, April 30, 2007 7:31 PM CDT

Well I just don't know what to say. Yesterday was the toughest, saddest, and happiest day of my life. Saturday and Sunday Caleb's blood pressure had been through the roof. Of course the doctors believed it to be discomfort from pain and also the ventilator, so they kept him sedated. Sunday late morning they decided to do another CT scan for reasons I didn't know. Shortly after our return back to the room the docs came and talked to me and Michelle and told the bad news about Caleb bleeding in the brain. I guess they sugar coated it for us until Korri could make it and we could all discuss it in the "family room". Without going into all the details, Korri and I had to face the toughest decision of our lives. Fight for Caleb, or let Him be free. After a couple of hours of shock and disbelief we decided to let Caleb fly away. It was hard not to feel like we were giving up on him rather than taking all his pain and suffering away. After we told the doctors of our decision we had all the family come into the room to visit and say their good-byes to Caleb. After an hour or so we asked the family to leave so we could spend his last moments alone. We picked Caleb up out of bed and placed him in Korri's arms. She rocked him back and forth like he loved so much for about half an hour or so. Michelle then picked him up and placed him into my arms. He never looked like such a big boy. I continued to rock him for quit some time until we decided he had suffered enough. The nurse came in and with Caleb laying in my lap, Korri at his head, and Michelle at his feet, he proceeded to remove the tape holding his ventilator in place. When he asked us if we were ready and I shook my head yes, he removed Caleb's ventilator. At that moment in time I felt like my heart had been ripped out of my chest and ran over by a semi. I couldn't help but feel like this was my fault. Caleb didn't put up much of fight which made things easier, letting us know that he was tired too. Caleb flew away at 8:48PM that night. I hope as he flew away he looked back down at us and said THANK YOU! Soon our tears of sorrow turned in to happy tears knowing our little boy is no longer sick, no longer weak, and no longer hurting. A day won't go by that we won't miss our Caleb. No parent should ever have to go through this, it is the absolute hardest thing anyone could ever do. I am so very thankful that Korri was strong through this. With out her and Michelle I would not have made it through. I pray prayers of thankfulness to our God in heaven for healing Caleb his way. We thank everyone for your prayers, cares and concerns for Caleb over his nearly five years of life. He would have celebrated his 5th birthday this Friday. We also thank God for Caleb's donor who gave us over 4 years of life with our son. CALEB.... WE LOVE YOU AND MISS YOU ALREADY MORE THAN YOU CAN KNOW. RUN, PLAY, SING AND LOOK OVER YOUR PARENTS AS WE CONTINUE OUR LIFE WITHOUT OUR LITTLE ANGEL.

Caleb James Rasbeary's Funeral will be Thursday, May 3rd, 2007 at 11:30am at
Forest Park The Woodlands Funeral Home and Cemetary
18000 I-45 South
Conroe, Texas 77384
936-273-4922

His viewing will be held Wednesday May 2nd, 2007 from the hours of 7pm - 9pm.

For those of you who have asked, donations may be sent to the funeral home at the address provided above through Friday.

Monday, April 30, 2007 12:57 AM CDT

Dear Friends,

Our dear Caleb passed away on Sunday, April 29 at 8:48 pm in the arms of his loving parents. He is now playing in Heaven and free from pain. Please pray for strength for his parents during this difficult time. Details on funeral arrangements to come soon. Thank you for your prayers, support and kindness. God Bless You!

With love,

Caleb's Aunt Kristin

Monday, April 23, 2007 10:35 AM CDT

PRAYERS NEEDED NOW.........
I have felt bad that I haven't updated in a few days, but there has been just so much going on that I haven't even felt like opening up my laptop. My days are filled with talking to doctors, nurses, and family about what all is going on that I haven't even had that strength to type an update....until now....
So today we are going to try dialysis to see if we can get all the extra fluid off of Caleb's body. They are not curtain that he is in kidney failure, maybe his kidneys are in shock from all what is going on. He is going to be on it 24/7 until we can get some of this fluid off his lungs. I have already signed the consent, so it should be started with in the next few hours or so. The kidney doctors have to be here when the procedure is started so we are just waiting on them. It is really scary because they said that in some cases, patient’s blood pressure drops dramatically right when the dialysis is started and has caused them their life. So URGENT PRAYERS ARE A MUST RIGHT NOW. They do not think that will happen to Caleb because his pressures have been okay, but it is always a risk. Also, they were going to put a new iv line in his leg for the dialysis, but knowing that we need to save the viens he has left for when he gets his transplant they are just going to use the line that is in his neck and rewire it with a bigger cathater. Just got word that they are going to do the cathater change now..so I will update soon. PLEASE PRAY NOW.............

Friday, April 20, 2007 0:32 AM CDT

PRAYERS NEEDED
It was not a good day today.....
This morning Caleb was doing really well. Oxygen level good and a lot more active asking for water and ice all day..Last night he spiked a temp of 104.9 and they drew cultures. Then today the lab called and said that he had yeast growing in his central line and urine cultures and the ICU team decided to pull the line leaving him with 2 iv's in his hand. So everything seemed to be going ok and then about 5 this afternoon he awoke from a nap and was just staring straight ahead and was very unresponsive to me calling his name.. He was having a seizure..They didn't know what was going on, and wanted to take control of his breathing so they decided to intibate him. I had to leave and when I walked out into the waiting area and called Jared, I just lost it..It was probably the scariest thing I have ever seen him do. The plan was to do a ct scan of his brain to find out what was happening, but after they sent some blood down to the lab, they got their answer at what caused the seizure. It was his blood sugar. They let it drop to 6. Which is very scary because normal is 70-110. I was livid and the head ICU doctor apologized to me like 3 times. Saying that it was very preventable and that he was sorry. I knew something was wrong because earlier in the day his pressures were dropping and I told the nurse that he need to be on fluids because that helped his pressures go up before. She did tell the docs and they ordered him fluids, but not fast enough. What happened was that when they pulled his infected central line out, they stopped his tpn. So for 4 hours he wasn't on any kind of fluids and his sugars just dropped. Very preventable.....I just feel like this whole stay just gets worse and worse everyday. Like I said before, we only came into to hospital with a pulled out central line and now all this. It's really scary to watch him go down hill so fast. So he is now on the ventilator, but hopefully come off in the morning. I will update more tomorrow...Thank you for all the wonderful prayer and the kind guestbook entries. We really appreciate it....

Tuesday

We are headed down to the ICU...Caleb is needing way too much oxygen from the mask and may have to be put on the ventilator.. Update soon......MANY PRAYERS PLEASE...........

Well what can I say....Caleb is getting worse......We checked in on Tuesday with a pulled out central line and now he has pneumonia, on oxygen and all of his electrolytes are out of wack. They are trying to correct all these things, but it just seems like they are doing more harm then anything. His x-rays are getting worse everyday. Today he had an ultrasound of his lungs and it showed that he has fluid all around the outside of his lungs. They were going to give him lasics which will help him pee off some of that fluid, but now his potassium is low, so they are giving him some potassium, re-checking his labs and then probably give him the lasics. I am so tired....we didn't get one minute of sleep last night, because his oxygen kept dropping and he wouldn't leave the O2 mask on. He fought me all night and all day, so I am just exhausted. He is also very, very thirsty and is just demanding water and ice all day. Caleb is definitely off the list for now because of all that is going on... I just hope that they can correct him soon so that he can be out of the hospital for his 5th birthday which is May 4th. It would be the second birthday in a row that he was in the hospital. Please say many, many prayers for Caleb for he is in major need of them. I will update more, when I know more......

Tuesday, April 10, 2007 9:34 PM CDT

This message is from Caleb's Aunt Kristin:

Caleb is back in the hospital, as he pulled out his central line this morning. Caleb also had a collapsed lung due to his coughing and inactivity. He is receiving oxygen treatments to help. Luckily, they were able to find a vein to insert an IV, and he will have surgery to replace the central line tomorrow. Please keep Caleb in your prayers (and Mom....who is still trying to get over her sickness, as well!). If you have a moment, please sign the guestbook today with a message for Caleb. It helps to know that his angels are thinking of him. Thanks for checking in on our little Super Star today.

Tuesday, April 10, 2007 7:28 AM CDT

We are on our way back to the hospital.....
Caleb decided to pull out his central line a couple of hours ago. So not really sure how long we will be there, but just wanted to let you all know that is where and what we are doing.......

Sunday, April 8, 2007 9:23 PM CDT

Happy Easter!!!
Not sure if all of you know, but we just got out of the hospital today. Caleb spiked a temp of 104 on Thursday morning, so I immediately rushed him to the er. My first thoughts were that he had a line infection. So when we got there they drew lots of cultures and started him on antibiotics. After a 10hr wait in the er, we finally got a room on the transplant floor. Thankfully all of Calebs cultures came back negative, including the flu and RSV test they did. So we were able to break out of there this afternoon. He does however have a really bad cold. I feel so bad because I think I gave it to him. I felt really bad myself at the beginning of the week and I tried to stay away from him, but he caught the bug anyway. I am never sick and I was just miserable with a fever and very achy body on Tuesday and Thursday. My temp was only 100 and I felt so bad, so I can't even imagine how Caleb felt with 104. It's so awful to see him get hit twice as hard with these yucky germs. Anyways we are home and he is doing okay. Still has a low grade temp and just wants to sleep. I am just so glad that it wasn't a line infection. He can't afford to lose another line right now. I was finally able to go on a mini vaction last weekend with some friends to Austin. I had a blast, we got to hang out with New York firefighters all weekend and just had a blast. Tuesday is our meeting with the school district, but I am afraid that he is not going to feel like doing any kind of testing. So that ought to be fun. Well, off to bed we go....Thank you for all your prayers.

Tuesday, March 13, 2007 10:37 PM CDT

Hello....
Again, not to much to update. Just waiting and waiting and waiting some more for this call to come. Our days are still filled with gaging, fevers and throwing up. The other day he saw me pull out a bag of frozen chicken from the freezer and he thought it was chicken nuggets and he kept asking for them. It was sad..I can't let he eat anything anymore or else he will get sick. Although he could eat soft foods, but chooses not to. All he wants is water, tea, water, tea, and more water. I did contact the school district to set up some testing, so that we can get a teacher to start coming out to our house, but our apt. isn't until April 10th. I can't believe he would be starting kindergarten in the fall. Time sure does fly by when you are having fun......Today wasn't a good day, he just laid on the couch and slept with 100.8 temp. I think his stomach was bothering him. Anyways, that's about it for now...Take care and thanks for checking in on us again.

Thursday, March 1, 2007 2:25 PM CST

Hi....
Sorry it's been few weeks since I updated, but nothing has really been going on other than the same things. Caleb has good days and bad days. Still continues to vomit and gag all day. And he can chug down a lot water. The other day he drank over 4,000 cc's of water. It was crazy. The doc's think his stomach is very acidic and it probably just burns all the time. So the water relieves some of the pain. We finally heard back from Pittsburgh about those extra points the doc's were submitting for Caleb. Well thankfully he got them and now he has 55. Which is excellent. So hopefully we will be hearing something real soon. Well that's about it... Sorry so short, but that's actually a good thing....
Take care and keep all those prayers coming...

Friday, February 16, 2007 10:30 AM CST

Just wanted to update a quick note that Caleb is doing great today....We are actually at the hospital getting blood, because his level was low. So we only have to be here a couple more hours. But he has been great this week. Playing, laughing, smileing, just overall happy. So I just wanted to share that with all of you. I will update again soon. Thank you agian for all your prayers.

Sunday, February 4, 2007 11:43 PM CST

I hope you all enjoyed the slide show..I will post captions to all the pictures tomorrow, so check back..

Today is a day that we are very thankful for...Caleb's 4th transplant anniversary. Although the last year has had it's ups but way more downs, we are still very thankful that Caleb's donor family made the decision to chose organ donation at a very hard time in their life. Thank You to them and please keep them in your prayers for today is not a day for them to be celebrating.
But now we must pray, pray, pray that another family makes that same exact decision. Right NOW, TOMORROW, or The DAY AFTER. I am sure many of you can tell by the slide show I posted how orange his skin color has gotten over the last few months. That is because his liver is failing and since he is only on TPN(iv nutrition) he is getting very puffy and his liver is taking a hit. It's the look that all transplant kids seem to get. Our days have pretty much been the same around here. Caleb did stay with his dada this weekend and he seemed to feel okay. We tried not to have a big celebration today, he just helped me make brownies and got a couple presents that I think he is going to like. But keeping the receipt of course. You never know with him. Over all this week has been pretty good. We had clinic on Wednesday and they didn't make any changes. Which isn't that great of news, considering we went to see if they could give us something for his stomach pain and gaging. But of course they said that they would call Pittsburgh to see what they think. I actually emailed Pittsburgh and they said that they tried celebrex on another patient that was having the same symptoms and it seemed to help. So our coordinator was going to see if Caleb could try it. Not really sure about that, cause it's used for adults that have arthritis. But I am willing to try anything at this point. Well that's about it for now. Hopefully the next time I update Caleb will be in Pitt. getting his transplant. Take care and please, please, please say many more prayers that this CALL will be a soon.. Thank you and goodnight...

Monday, January 22, 2007 1:41 PM CST

Well things have pretty much been the same around here. Caleb continues to feel pretty yucky most days, but tries to perk up at night just when it is time for bed. His blood level has been dropping slowly over the last few weeks, so we had to go in on Friday to get a transfusion. That went well and our nurse was able to come with me, which helped out a lot. Other than that...his labs actually have been pretty good. He continues to throw up and gag all day long, which is really hard to see, but all we can do is pray and pray and pray again that his call comes soon. I was just thinking how weird it would be if he were to get the call on his first transplant date, which was Feb. 4th. It will be his 4th transplant anniversary that we will be celebrating. Well I don't know how much celebrating we can do, since things really aren't going well right now, but we are still very thankful that Caleb is still with us. I just can't believe how fast time is going, he is going to be 5 in 3 months. I hear Caleb waking up from a nap.....so I will update again soon. Thank you for Caring...Take Care.....

Sunday, January 7, 2007 4:01 PM CST

Hi...
Finally able to have some time to update on what has been going on. The move was okay, except for the part where the movers took 7 hours to move our stuff. They were trying to take their sweet time because they get paid by the hour. It was not fun and we had to tell them a few times to speed things up. Rude people... Anyways Caleb didn't feel good that day so I spent the day holding him and trying to stay out of the way from all the drama. All week he felt pretty bad with a stomach ache and then on Tuesday he spiked a temp. The doctors wanted us to come in for repeat laps on Friday and get cultures just to make sure everything was okay. His white blood count on Tuesday was 25, meaning he could have some type of infection. Well on Friday it had gone back down to 15, so we were happy about that. I guess what ever he had; his body was able to fight it off. It's just really hard watching him in chronic stomach pain every single day. I talked to our Pittsburgh coordinator and she said that the doctors are going to write a paragraph to unos explaining Caleb's condition, and hopefully he will get more points. They are asking for 10 more points, which would put him at 50. I thought that 40 was the best, but I guess in special situations, they can try to submit for more. It takes 21 days until we will know if he can get those points. He just needs this call sooooooooo bad. Our private duty nurse started and it has been going pretty good. She helps me out a lot and I am very thankfully for that. Caleb hasn't gotten used to her yet, but hopefully soon. He just hates his vitals being taken every morning, but it is only once a day so it's not to bad.
Well I hope you all had a good New Years. Take Care

Wednesday, December 27, 2006 10:00 PM CST

WE ARE HOME...
As many of you probably know we got home Friday afternoon. Just in time to spend Christmas with the family and boy was it fun. Caleb, my mom and I all stayed at my sister's house on Christmas eve and was able to have a great morning opening lots of presents. Caleb was really excited and wanted to play with all of his things right away. I was a little nervous taking him out of the hospital cause he had a little bit of a fever, but we did lots of cultures and everything was negative so I felt okay to leave. Saturday and Sunday he felt pretty yucky when he was with his dad, but Sunday night he was back to feeling well. Things have been pretty hectic around here because we switched to a new home care and all the equipment and how they do things are a lot different and a lot more work for me. But fortunately our insurance has giving the okay for us to have a private nurse in our house. Which started today, so we will give that a try. In 4 years I have done all Caleb's care and have never needed a nurse, but I just thought I would try something different and it will allow me to get out of the house from time to time and have some me time. Well, that's about it from our end. I hope everyone had a very Merry Christmas and an even better New Year... I do apologize for not getting back to those of you who have tried calling me. Things have been crazy around here with us moving this Friday, getting out of the hospital, having a new home care co., and a nurse in our house, but I will call you all as soon as things settle down. Take Care.....

Monday, December 18, 2006 8:52 PM CST

We are keeping our fingers crossed that Caleb's pic line placement tomorrow at 7:30 in the morning goes great and we are able to get out of here by Friday. He would have to go home on a couple days of IV antibiotics, but everything else is pretty much the same. I have had a long weekend with Caleb still feeling pretty yucky. His cough is slowly improving but he has not gotten his energy back yet. Today I made him walk down the hall way and he was holding on to my leg walking sideways and crying. I haven't been able to have a break from this place since last weekend and being in this place 24/7 can really get to you. It's just so hard being in here all the time and never really getting a chance to go home, which is only 30 min away. Sometimes I feel as if the world is progressing so quickly right in front of my face and my life is just standing still. Caleb is my life and I just wish he could catch a break from all this pain and go home. I did talk to one of our gi doctors this weekend and she said that Caleb has actually gotten some offers for transplant, but they haven't been a match. Guess they just want to find the perfect organs for my baby. We are for sure moving at the end of the month and I haven't really been able to pack up. Well, hope you all have a great Christmas.

Thursday, December 14, 2006 0:33 AM CST

Caleb is still suffering from the awful RSV virus. He is very congested and has a really bad cough. On Sunday he decided to spike another fever so they did blood cultures and....he has a line infection too. We found out today that he had ecoli growing in the both ports for two days now, so this morning they decided to pull the line out. He had to get poked for 2 hand IV’s this morning and he is so sick that he didn't even put up a fight to stop them. Just kind of laid there and whined. Broke my heart...Tonight he got a blood transfusion and some albumin and now he is itching his body all over. Hope it is just from the transfusion and not the yucky itching that he had to deal with a year ago. I was able to have a nice break this weekend and enjoy the cold weather we have been having. I just don't understand why every time I come back Caleb gets sick. Anyways, the plan is to get another line in and send us home. The problem is that he might have to wait till Tuesday to get a new pic line placed because they are full. Tomorrow I am going to see if can pull some strings, because I want to be out of here by next Wednesday. Well Caleb finally fell asleep so I guess I need to try to get some sleep myself since this week has been pretty stressful and I haven't gotten much sleep. Take Care.....

Monday, December 11, 2006 1:05 AM CST

Caleb has RSV....

Sunday, December 10, 2006 4:31 PM CST

Caleb has the FLU.......

Saturday, December 9, 2006 11:13 AM CST

New Pic's.
Well, I am sad to report that we did not make it home.....I knew that I shouldn't of even said anything about going home until we were actually there. Caleb has caught a bug and is coughing and sneezing. The doctors actually wanted to send us home yesterday, but I didn't feel comfortable because he had a temp of 100.4. I don't know what they were thinking wanted to send us home with him like that. He just wanted to sleep all day and I kept telling them that this was not him. I almost felt like they thought that I was stupid for wanting to stay through the weekend, so we can make sure that he is okay. I am sorry but I know my child and this was not him. They kept saying that it is just a bug that everyone on the floor has and that we need to just go home. Well I came home this weekend for a break and I just got off the phone with Jared and he said that Caleb has 102.3 fever. I am so glad that I made the decision to keep him there and I wish I was up there so I can give those annoying doctors rude looks... If we would have come home, we would of been right back up there today because of spike in temp. Jared said that they did do cultures last night, so we will see what those show. It could just be a cold bug that everyone has, but Caleb is going to get hit harder than anyone else because of his immune system. I don't feel 100% myself. But anyways I am off try and do some Christmas shopping.....Have a good week...

Wednesday, December 6, 2006 9:03 PM CST

Surprise, Surprise Caleb may be able to go HOME tomorrow. We were actually supposed to go today, but we are still waiting on our insurance co. to give the ok to our home care company. He has been doing really well the past few days. No bleeding, no fevers, no nothing... We were finally able to get him off the octriotide drip that he was on for bleeding and so far so good. I am trying not to say much to him about going home, because all of us transplant people know that you never say home to the kids, because they can find a way to not make it happen. So we are just keeping our fingers crossed that we make it home and stay there for the Holidays. We are also going to be moving in a couple weeks. The new place is only 15 minutes from our house now, so it's not too bad. I know this isn't a good time to be moving around Christmas but I am actually looking forward to a change. Everyone should have a change every once in awhile. This week has been really great here at the hospital if you can imagine that.... There have been lots of companies coming by and giving the kids Christmas presents. Caleb got to see Santa and Mrs. Claus the other night. He could have cared less, but we got a really cute picture of us with them, so I will try to post it soon. Then yesterday, 7 of the Texans Football team came by to give the kids gifts and sign autographs. Caleb again could have cared less, but I was having fun. Well hope and pray that we get out tomorrow. Caleb has just been doing so well over the last week and I truly believe that his Grandpaw Claude has something to do with it. I will post more when there's more.

Thursday, November 30, 2006 1:27 PM CST

Wow! This year is almost over and sadly we have only been able to spend 6 out of 12 months at home. This year has not been good to us, but hopefully 2007 will be the answer to all our prayers. Caleb has not been having good days lately. He is in lots of pain and receives morphine at least twice a day for the last week. The bleeding from his stomach has cleared, but now it's the awful pain that no one can explain. Screaming and hitting his stomach is so hard to see. All he wants to do is drink water and lay on me. The only thing that we can think of is that Caleb's bowel is very dilated and in chronic rejection, so the pain is going to be here until his gets a new set of organs. We know that his stomach is very irritated and that probably hurts pretty badly also. We did have a repeat CT scan of his lungs to look at that nodule that was seen a couple of months ago and fortunately they didn't see anything this time. They were worried about his kidneys so decided to do a GFR, not sure what is stands for, but it's a test that they do to check kidney function. Well, sadly his kidneys are only working 50 percent at they should be. This is really scary because how are his kidneys going to hold up to another transplant? All those antibiotics and Prograf can cause kidney failure. Some of the transplant kids we know have had to have a kidney transplant after their main transplant. Gosh, the days have been going so slow around here lately. When Caleb feels good, time flies by, but when he is hurting time goes so slow. Well, that's it for now. Hope you all are getting into the holiday season, just do me one favor and celebrate for me. It's hard to get into anything under our circumstances. Take care....

I am sad to report that on Tuesday the 21st of November, Caleb's Grandpaw Claude is now in heaven pain free. Please keep Donna and the rest of the family in your thoughts and prayers. He will be greatly missed by all..........

Sunday, November 19, 2006 12:03 AM CST

Hi....
Caleb has been doing okay this past week, things are slowly getting back to NORMAL, well our NORMAL that is. We finally made it up to a regular room where he doesn't have to be on the monitor 24/7 and can be free and go on walks around the hospital. I think getting him up here has made a big difference with him wanting to get out of bed. We walk down to see the train almost everyday and he gets to go up to the pt and OT department. Which he loves. The other day they took him in the gym and he was so happy. It was really good seeing him smiling and saying "wow" instead of crying and saying "stop it". It's been really hard this hospital stay for the both of us. I have no words to explain how it feels to see your child so sick and in pain all the time. Hate to say it but it makes me start placing blame on myself...I try my best to keep him healthy, happy and pain free but things are out of my control. All I can do is have faith that this call will be soon. And have faith that this second transplant will go well and Caleb will be able to conquer the world. I just want him to be able to do things that many people take for granted like.. going to school, birthday parties, having friends, spending time with family, and most importantly sleeping in his own bed in his own home. Sorry if I seem kind of down this entry, but like I said before things have been really hard this hospital stay and the walls start to close in on you when you don't get much of a break away from here. I really thought that there would be a good chance that we would get out of here by Thanksgiving, but Caleb had other plans. On Friday night he decided to start bleeding again from his stomach. They have been going down on his bleeding medication and I guess Caleb’s stomach didn't like that we were trying to wean it off. They had to bump up the dose and he is probably going to get a transfusion today or tomorrow if he continues to bleed. Our nights here are really hard cause Caleb usually wakes up with stomach pain, but last night he actually had a good night sleep. This might explain why he feels so great today. He woke up early and is just talking, playing and singing. He is so funny. Well guess that's it for now. Hope all of you have a great Thanksgiving......

Please say lots of prayers for Caleb’s Grandpaw Claude, he is home but is not doing well right now. He needs many many prayers.........

Monday, November 6, 2006 10:51 PM CST

What a crazy weekend we had....
Caleb had been doing great all week and thought he was finally on the road to recovery and then boom we get hit again with another set back. The doctors decided to scope him on Friday and get biopsies to rule out rejection. He had been bleeding from his fistula on and off for a week and they were really concerned where the bleeding was actually coming from. So that was another reason for the scope. Well something inside of me told me that doing the scope was not a great idea. But then again he hadn't had a scope in a while and I wanted to make sure that since we already knew that he is rejecting the outside of his bowel, that the rejection had not spread to the inside. So I signed the consent and they took him back. I was able to go back with him until he fell asleep from the sedation. He was being so good and funny. Just keep repeating his colors and numbers. Since I don't get much of a break, I took advantage of the situation and ran to get lunch. By the time I came back he was done. I ran into the doctor who did the procedure and she told me that everything went okay and that Caleb was so good threw it all. Then.... she proceeds to tell me that she took a biopsy in his duodenum and that it bleed a little more then she had liked, so he was probably going to need blood and they went up on the octreotide that he was on from the bleed from his fistula a few days earlier. I hope everyone is following this, because I feel like I am just rambling on. Sorry, Anyways after hearing that, I knew that doing the scope was a bad choice. And I was right, because around 10 at night, he started tossing around in his bed like he was in pain from his belly. Then, when I unclamped his g-tube after giving him meds, the output that came out was all bloody. I was livid and so mad at my self for giving my okay for the scope. So the pain got worse through the night and he started spiking a temp. Neither of us had gotten any sleep and I was so miserable by morning. My mom came up to give me some type of break, but I couldn't leave Caleb knowing that he was in that kind of pain. You know you are supposed to help your children when they are hurting and not being able to do a thing for him is so hard. The next day was even worse. He was requiring morphine every 4 hours and it wasn't even touching him. He ended up having a blood transfusion and got an ultrasound and x-ray of the abdomen. They talked about sending us back to the ICU, but decided just to watch him very closely. The test we did didn't show much! I am so tired of him hurting and the doctors can not find what is going on. They think its one THING and then do a test for that THING and then it's not that THING. Sooooooo frustrating. Sunday was some what better for him pain wise, because they went up on his morphine dose and he just sleep all day. This was okay, because I was able to catch up on some sleep too. The doctors are now thinking that he has panceantitis. This is inflammation of the pancreas. There aren't any meds that you can do for panceantitis; it just has to resolve on its own. I did some research and he does have every symptom for it. Ya know why is it that when one issue clears up with Caleb another one appears? Today he was ok, just still in lots of pain and just wanting to sleep all day. He has had a fever all day of about 101 and Tylenol doesn't seem to help. My mom came up again tonight and I guess she brought had the magic cause Caleb is 90% better. I am crossing my fingers, but he has been lying in bed watching a movie for awhile now and his pain seems to be gone. He had another ultrasound today and all it really showed is that his belly is filled with fluid, which we know is blood. More then likely from the biopsies on Friday. The deuodenum biopsies that our doctor said bleed, is right below the stomach and the ultrasound tech said that the blood was coming up from the bowel and filling up the stomach. The doctor who did the procedure today said that she is kicking her self in the butt for doing the procedure. She could tell that I was mad too and apologized for tipping the boat. I am just praying everyday that we get the call, because things are getting worse very quickly and I don't know how much longer we have if the call doesn't come soon. And I hate to say that but I have to be honest, things are not good right now. When he feels good from the outside, he seems to be in great spirits, it's just his insides that are failing on us. Also I forgot to add that when he got a new PIC line a couple weeks ago, they had the nerve to put it in his upper right leg. I was so mad, because being right there by the diaper area is just asking for infection. Plus now he won't put any pressure on that leg and stands on his tipsy toes. He is definitely going to need physical therapy because he hasn't walked in over 4 weeks. Please everyone pray that Caleb continues to heal and get over this hurdle, gains his strength back to want to walk again, gets to spend some time at home before we go to Pitt. But if not that's okay, and most importantly get the CALL that we are longing for. Well I think that covers our fun weekend. I will update again soon

Monday, October 30, 2006 3:08 PM CST

Okay....
Where to begin....
Things seemed to be going in the right direction for us and had some hope of going home this week. Until... last Friday when I woke up at 6 am to check on Caleb and saw him laying in a puddle of blood. I thought it was coming from his g-tube, but it wasn't. It was coming from his fistula and there was a huge blood clot that was clogging the bag up and so the blood was just oozing down his sides. I can not express how it feels to see that happen to your own child. I probably would have freaked out, but I have seen this happen before in Pittsburgh right after his bowel resection. I did have to tear the bag off and saw that the outside of his fistula (bowel) was bleeding. So I put pressure on it and the bleeding stopped. He did have to have a blood transfusion that day and I was hoping that it was over. But I was wrong. Jared stayed with Caleb this weekend and said that on Saturday, the same thing happened. Then yesterday when I came back from a much needed weekend break, at 3 am I woke up to check on Caleb and I felt like I was having deja vu. There I was again cleaning up lots of blood. I don't get it. Why does he bleed and then stop? His blood level dropped to 5, which is really really low, so again he got a transfusion and some FFP (fresh frozen plasma). He is taking a nap now and is not bleeding at this moment. It's just strange, because all of his clotting factors have been okay. So we restarted him on octreotide, which is for bleeding and will just be watching and praying that this doesn't happen again. I did contact Pittsburgh and they said that Caleb is on the top of the list, so all we can do is wait…………..Well I am going to get some lunch while he is sleeping, but I will update soon. Please continue to pray that his call comes soon. Thank You!

Saturday, October 21, 2006 2:54 PM CDT

Hello all! Thanks for your prayers! They are working!

Caleb is now in the PCU (progressive care unit). He does not a have a fever and does not appear to have abdominal pain, but he is still on lite oxygen and not feeling very well. He will get a pic line on Monday, if he continues to show improvement.

Thank you for checking up on Caleb today! He is a true fighter and our little hero!

Monday, October 16, 2006 11:02 PM CDT

CALEB IN ICU! PRAYERS NEEDED!

This update comes to you via Caleb’s Aunt Kristin:

Caleb is still in ICU with fever, pain and has developed pneumonia. He is on oxygen, as well. He is finding little comfort as something is hurting his little body. The docs are still trying to figure out what is going on. Please pray for him to pull through this like the superhero he is. Many thanks for checking on Caleb tonight, as well as continuing to pray for him and his recovery.

Thursday, October 12, 2006 4:03 PM CDT

Okay, I finally found some time to update! AGAIN! The reason why I say that is because on Tuesday I spent 1 1/2 hours updating and realize that some how one of my old journal entries got posted. So I wasn't ready to update until now. This actually was a bad idea because now there is way too much for me to update today. But please bare with me and I will post more through out the week.

After spiking temps of 103-104.2, we have found the culprit. Yeast in his pic line. Monday evening we were able to come up to our own room, in a unit called the PCU. It is allot more private, but Caleb does have to be on all the monitors. Since they found yeast in the line, they ended up pulling the line out on Sat. He now had two peripheral iv's in each arm until the infection clears. He actually was supposed to get a new pic line yesterday, but his labs showed that his blood wasn't clotting as well as it should. They wanted him to get it today, but now his stomach is bleeding, so until they get his bleeding issue clearing up then it's on hold till Monday. He's been getting stuck everyday since we have been here. This is not fun and so hard to see. What makes things worse is now that he talks more. All he says all day is, "wait, stop it, no no, hold on and the worst one is "am I okay, or "your okay". It's actually all the words that we tell him all the time. Poor baby. So today he had a ct scan, which showed some type of cyst on his pancreas, but the radiologist was pretty certain they is was not an abscess. I guess this was there before when he had a ct scan a couple months ago, but it has now gotten bigger. So they are going to let Pittsburgh know. Also, they found a nodule in his left lung. This could be what is called a yeast pocket. So the plan now is that he is going to finish the course of antibiotics for 3 more days and repeat the CT scan to see if it is gone. The good news is that he hasn't had a fever for 2 days now. So hopefully the antibiotics are helping. Also Sunday night his g-tube fell out in the middle of the night and they just decided to replace it with a Mickey button, which is allot better not having to have a heavy tube hanging down all the time. Well a couple of day after they gave him the button, it has been leaking like crazy. Since his stomach is bleeding I am sure they that you can picture the big mess that I have to change at least a few times a day. Wow, I am so tired; I keep closing my eyes while I am typing this. He is unfortunately off the transplant list right now because of the line infection. But as soon as he is infection free, they will re-list him. Well that's it for now. I am off to take a nap. Keep all the prayers coming. Thank you!

Also please pray for Caleb's grandpaw Claude for is still in the hospital and just found out that he has lung cancer. They have done some rounds of chemo and he is doing okay. Caleb's great grandad is also in the hospital having complications also. So we need as many prayers that you all can give. Thank you!!

Thursday, October 12, 2006 2:43 PM CDT

Tuesday, July 25, 2006 10:38 AM CDT

Caleb has been doing okay since I last updated. Although he has come down with something called the cdiff virus. Probably picked it up in the playroom. So the fever and shakes were due to this virus. I thought for sure it was another line infection, but thankfully I was wrong. They have started him on antibiotics and are going to culture him again in a few days. The virus is kind of like the roto virus. Just a yucky bacteria that transplant kids can get easily. He hasn't shown any signs except the fever that he is even sick. He has been fairly happy, besides throwing up once a day. We are about to go down the see the dentist because his gums have been bleeding lately, so we will see what they say about that. The g-tube is scheduled for early morning on Thursday. I asked if we could be home by the weekend and they said that they didn't think that would be a problem. But we shall see what the week brings; I am not keeping my fingers crossed at all. I will update soon. Please keep our friend Nicholas in all your prayers as well for he received his second multi organ transplant yesterday and is doing really well. Hopefully Caleb's second call will come soon!

Saturday, October 7, 2006 4:34 PM CDT

Prayers needed! Caleb in the I.C.U. with a 103 temp. Waiting on cultures to see if he has a line infection. Will update soon. In the meantime, please send a prayer or good thoughts Caleb's way! Many thanks for checking up on us today.

Monday, September 25, 2006 5:56 PM CDT

Please keep Caleb's Grandpaw Claude and Great Grandad in your prayers for they are both in the hospital right now having complications!

Hello
Once again, I haven't updated in awhile sorry! Things are pretty much the same around here. Caleb's blood level has been low over the last couple of weeks so Pittsburgh wanted him to get a transfusion. So last Monday we spent the day in the hospital getting blood. It took a couple of days for him to get his energy back, but now he feels much better. He does bleed often from his stoma, g-tube and fistula and probably will continue that until he gets another transplant. He is in good spirits though. I did email our coordinator in Pittsburgh and asked her in Caleb still had 40 points meaning that he is on the top of the list, she said yes, so that was good, because for some reason I thought that if you needed a transplant and were at home rather than in the hospital then you were further down on the list. But that is not the case. Also awhile back they ran a test to see what percentage if any would Caleb reject another set of organs when he gets another transplant and I am glad to say that the test came back with a 0hance that he would reject again. Great news, but all this is so experimental that we have learned that anything can happen.
Today we went to the park for a long time, and it is the first time in a few weeks that I have seen with a smile from ear to ear. He had fun! My sister and I took Caleb to the zoo yesterday and he loved it. This was the first time that he actually enjoyed it and was able to say what every animal was. It was a beautiful day!

Thursday, September 7, 2006 10:36 AM CDT

Hi,
Sorry I haven't updated recently, but things really haven't changed. Caleb continues to do well considering all that is going on. All his labs have stayed the same over the last few weeks. We do have our rough days when he just doesn't feel good and vomits. I know when it's about to happen because he starts hitting his stomach and saying "wait, wait." It's not fun and so hard to see your child hurting. Still praying and hoping for the call soon. On another note, Caleb has been spelling like crazy. Words like..mouse, toys, bread, milk, juice. I think we have to spell those words at least 10 times a day. He is so funny he is hooked on spelling. He is sitting with me and wants me to spell B O O K, C O W, M O O N. I wish you all could hear what he is saying right now, he is talking about the cow jumping over the moon. So funny! I am going to try to get him back in the speech and the ot program that he was in before. Hopefully the wait isn't to long. This weekend should be fun. Caleb's Aunt Carla is getting married on Sat. So today I have to find Caleb a cute outfit. On the 16th Caleb has a neurological exam, it's suppose to be 4 hours of testing. Not really looking forward to that, because last time Caleb would not co-operate at all. It was so funny the other day at labs, we were on the elevator with this lady who got off on 7 and Caleb said "Bye, see you later" Everyone on the elevator started laughing. He always entertains everyone on the elevator when we go there. Talking up a storm about who knows what and counting every floor as we go up. Well Caleb wants to go down stairs now, so I will update soon. Hope all of you are doing good. Later today I am going to post new pic's from Caleb at the park. Take care.
~ K and C~

Tuesday, August 15, 2006 3:00 PM CDT

Well there really hasn't been much to update. Just that Caleb is still doing great here at home. All of labs have been looking good and we actually go for our first clinic appointment to see Dr. Karpen tomorrow at 8 am. Not looking forward to the early start, but hope everything will go smoothly. We took Caleb to the beach on Saturday. He was really scared at first but then realized that it was pretty cool to have the water splash up onto his feet. It was kinda humorous though watching him stand in one spot reaching out for me saying "ok, ok, ok" over and over. We didn't stay out there to long cause of the awful heat, but it was enough time to take lots of pictures and see Caleb enjoy himself. That's about it from our end, just still waiting on the call and hoping it will come soon. Take Care!

Also please say a few extra prayers for our friend Justin and his family, he flew to heaven on Thursday!

Thursday, August 3, 2006 12:34 PM CDT

Well all is going great being at home! Caleb is just so happy with all his toy selection! Our flight was great and he was such a good boy! He just watched his thomas the train movie the whole time. Our flight was delayed leaving Pittsburgh and we had to catch a connecting flight in Dallas, which we had to run to the gate. It was not fun running while pushing a stroller and carrying a heavy bag. We did make it just in time though, not sure what we would have done if we missed it. So this week has gone fairly smooth. Caleb had labs on Tuesday, which looked pretty good. His Bili has come down, but not enough to take away his very yellow eyes. I didn't really even realize how yellow he was until I took a picture of him and I and our skin color was very different. He did have a blood culture from last friday in Pitt that grew positive, so we are treating him with antibiotics and repeating cultures tomorrow. His cdiff culture from Friday was still positive also, so he is still on oral antibiotics for that. Other than that, he is great.......
Please keep all the prayers coming for God is truely listening!

Sunday, July 30, 2006 12:23 AM CDT

WE ARE HOME!!!!

I will update more later when things settle down!

Thank You for all your prayers!

Tuesday, July 25, 2006 10:38 AM CDT

Thursday, July 20, 2006 2:47 PM CDT

Surprise Surprise!
Caleb did not get his g-tube today! This morning he decided to spike a temp and start the trembling. Knowing that that is what he does with line infections, I quickly had them draw cultures and they cancelled the procedure. He did get Tylenol and is feeling much better. We are actually in the playroom and he is acting okay. I wished they would just do it tomorrow, but they said that it wouldn't be till early next week. So that's the news for today. Wish it would have been better. Please keep him in your prayers. Thank you!

Tuesday, July 18, 2006 8:27 PM CDT

I am sure many of you are wondering what is going on with Caleb in the great state of Pennsylvania. He has been pretty much the same as he was back home. Still throwing up at least once a day and still pretty gaggy. Since the doctors really didn't see anything that explained the cause of his vomiting, they decided to do a cat scan of the abdomen again. He did really good and was able to keep 8oz of the clear contrast down. Well today the doctors said that they did not see anything that looked to concerning, just that they think all this is happening because of his bowel rejection. The bowel is just sick and has poor motility. Not wanting to move stuff through and that is why he vomits. Anyways he is going to have a g tube placed on Thursday so we can get the tube out of his nose. I am not happy about him having another scar and another contraption on his belly, but keeping the ng tube down his nose can cause lots problems with irritation and can also be a reason why he is so gaggy. It should actually be pretty tricky how they are going to place it, because his old scar is underneath his fistula bag. So I hope they can go in a different spot, so that it doesn't interfere with bag. They tube will actually work just like the ng tube down his nose, but we will not have to suction him out all the time. They do want us to hang around for a couple of days after the tube placement just to see if he is going to be okay with it. I am hoping to be out of here by Monday. But we will see, I don't want to keep my fingers crossed. We will eventually put a button in place of the tube, so that will be more comfortable for him, but he has to wait for 3 months so that the hole forms a nice track that will not close up. Well I feel like I am rambling. I am actually really tired so I think I am going to call it a night. Please keep those prayers coming and hopefully he will get the call soon for new organs. Take care.

Saturday, July 15, 2006 10:22 AM CDT

As most of you already know, Caleb got the call for new organs Thursday morning. We had been worried and stressed about finding a flight to get him there but TCH said don't worried about it we will get him there. Shortly after the co-ordinator called Korri and told her to pack her bags, TCH called and said meet us at the airport. Korri then called me and told me the same. I wasn't planning on going until I knew it was for sure going to happen so I wouldn't miss work. Michelle and I arrived at the airport before Korri and Caleb so we waited on them. When they got there I picked Caleb up for a visit before they were off. He was hugging and squeezing me tight, not the way he ususally hugs. When i went to put him on the plane he didn't want down then gave me a look like "come on". I couldn't let him go like that so i jumped on the plane too without a single item packed but i wasn't worried about it. We had a good flight there except Caleb got a low grade fever and had started sneezing the night before. When we arrived the nurses drew a lot of blood for tests. The docs came in and accessed Caleb. We could tell they were concerned about his cold. All the doctors had a pow-wow and thought it would be best to not go through with the transplant. Before transplant they wipe out your immune system so any little thing wrong can turn into a major issue and thats not what you want to be dealing with during a transplant recovery. Later on we found out that the bowel wasn't a good organ so another child was able to recieve the liver. The docs were ready to turn us back around and go home but we decided it would be best for them to run their own tests and see why Caleb is throwing up all the time. They have done one test which they believe to see NO blockage which doesn't explaing the throwing up. Not sure whats next but I am leaving this afternoon to head back home and get back to work. Hopefully Korri and Caleb will be right behind me after they figure out whats wrong. We still believe God is in control and have faith that Caleb will get his organs very soon and will recover swiftly and return home happy. We thank everyone for their concerns and prayers. Korri should update with any new news.

Wednesday, July 12, 2006 3:52 PM CDT

HOME SWEET HOME!
Caleb is about to wake up from a nap, but just wanted to let everyone know that we are home and things are going well. It was a little overwhelming at first, but things are finally starting to fall in place and it is actually pretty easy with him being on tpn and replacement fluids at night for 12 hours. He has been a little overwhelmed also by not knowing what toy to play with or what movie he wants to watch. It is really funny to watch him run around this place. We don't have to have labs drawn until Monday, so hopefully everything will go smoothly until then. Well I think I hear him stirring, so I will update more later. I do want to thank all of you who have prayed so much for us, if it wasn't for you all we may have not gotten HOME. Thank you from the bottom of our hearts.

Tuesday, July 4, 2006 4:51 PM CDT

HAPPY 4TH OF JULY

I wanted to wish you all a great holiday and to give a quick update on Caleb's status. He is still feeling pretty yucky. We were able to get some answers as to why he feels so bad. He now has a blockage in his jejunum. This is a lower part of your small bowel. I thought that we were definitely going to be shipped off to Pittsburgh last week, but when our doc's here talked to the doc's there, and they said that it was okay for us just to stay here. I guess their reasoning is that they are not going to do a bowel resection on him if his bowel is just going to come out soon when he gets a new transplant. What my question is is how soon are we talking about? Because he can't keep going on like this. He is so gaggy and at least throws up once a day. He does still have the ng tube down his nose and when ever he starts to gag, I hook him up to suction. We try to keep him clamped most of the day and he seems to do okay with that. They are talking about sending us home soon, but of course with the ng tube with suction at night. I will have to do tpn, lipids, and replacement fluids at night. He did have a culture come back positive last week with ecoli in one port, but it has cleared with antibiotics. So he will have to be on antibiotics for a few more days. Well my mom just got here to watch the fireworks with us tonight. I think we are going to walk down to the park to watch them. Please pray that Caleb gets the call soon so that he can start to feel better and try to start a somewhat normal life again. Thank you for all your prayers, I am certain that they will be answered soon.

Wednesday, June 28, 2006 9:19 AM CDT

Well..Well...Well...Caleb continues to show no signs of improvement. He acts like he feels great, but he is still throwing up every now and then. Yesterday we tried to repeat the CT scan with clear contrast and he threw it all up after 6 oz. So the doctors talked with Pittsburgh and they wanted us to try an upper gi today. Well we did and it failed like usual. He was already throwing up this morning before we even started, so I knew that we were going to have problems. They put about 2 oz of the chalky contrast down his ng tube and they kept taking pictures about every 20 seconds. Well the doctor noticed that it was all just sitting in his stomach and not emptying out at all. They wanted him to walk around to maybe get the stuff moving, but of course right when I put him down, he threw up the contrast everywhere. So it appears to me that there is something going on where the bowel meets the stomach. This is going to require another surgery I am sure. We couldn't finish the test down stairs, so we are waiting for x-ray to come up in about an hour, just to see if any contrast was able to pass on down. I am sure that we will be spending the rest of the summer in Pittsburgh. So I have been trying to prepare myself to leave HOME AGAIN. Also his line is growing ecoli AGAIN. If the line does not clear in a couple of days then we will have to pull it out. This is all just too much, infection after infection, test after test, day after day. All I want is for him to be happy again. I remember last summer he had so much fun hanging out at the pool and going to the park and now all he can do in look out our window up here on the 12th floor and wish he could be in the free world. Well I guess I will update as soon as I know what is going on with him, but until then please double up on your prayers tonight for Caleb. Thank you and have a great day!

Monday, June 19, 2006 3:51 PM CDT

Hello All,
Finally some new pictures. The main pic was taken when I took him to ride the train that goes around the zoo a couple of weekends ago. He seemed to enjoy it and I think was just thrilled to be out of the yucky hospital for the day. But a couple of days later he got really sick with fevers nausea and vomiting. He was free of fevers since last Thursday until last night. After throwing up he spiked a temp of 100.3. But it went down fairly quickly. He hasn't been able to eat or drink for a week now and overall feels really bad. Everyday I think he is starting to feel better, because he will start to play and talk and then all of a sudden he starts to get really sick. They really haven't done anything here except for an ultrasound and x-ray of his abdomen. Which didn't show much. I did send an email to Pitt. so I am waiting on them to let me know what other tests need to be done. Actually the doctors just came by and we are going to do a ct scan of his stomach. So they want to place an ng tube down his nose so that they can put the contrast down the tube. As much as I don't want him to have a tube down his nose, it will actually make him feel better. I think! It will allow the stomach to drain so he won't throw up anymore, and also we will be able to give his meds threw the tube without worrying about him throwing up. They are also wanting to scope him, but want to make sure it is okay with Pittsburgh first. His blood level was really low today for some reason, so he is getting blood right now while he takes a nap. So I will let you all know what happens with the tests as soon as I know something. Please keep prayers coming, Caleb could really use them ALL. Thank you!
K and C

Friday, June 9, 2006 10:36 AM CDT

Let's see if I can try this today! Yesterday I wrote a long journal entry and when I went to submit it my computer shut down and I lost the whole thing. I was so frustrated that I couldn't even mess with it until today. Soooo, last weekend I got to have a break and Jared stayed with Caleb. Well Friday night, just an hour after I left. Jared called me saying that Caleb's body was trembling and he had spiked a temp of 102. I was so upset. I don't know what it is, but every time I try to have a break from this place something goes wrong. So frustrating! Anyways, they drew more cultures and started him on 3 antibiotics. We knew that he had a line infection, so the antibiotic that he was on was not killing the bacteria, which is called serratia marcescens. Another bug from the gut! It is getting really scary now. Three line infections in a month and a half. I don't think it's that the nurses aren't being sterile; it's just that his gut is very unhealthy and needs to come out. The bacteria in his gut just keeps cross contaminating into his blood stream. And since his immune system is weak he can't fight off the infection. Scarrrrry! If we get the call for transplant he won't be able to go because of having an infection. They did say that if he clinically looks good then they probably would take him. I really wanted to try and by as much time as possible before Caleb had to have another transplant, but it's time. I hope and pray that we get the call soon before we run out of line access or he is just too sick. He also started bleeding again on Friday night. The doctors say that the infection can cause the bleeding. This makes sense to me, because every time he gets a line infection he starts bleeding. I was able to get him out of the hospital yesterday for 3 hours and he had fun. I think this weekend I am going to try to take home for a little bit, since he hasn't been HOME for 5 months. I can't wait to see the look on his face. He is really doing well with his speech. My mom was working with him one day and spelled out words like... CAT, MAT, SAT, HAT and Caleb read the word. I was amazed! He even could read his name. He is so ready to learn so much it's just hard being in here. They did have to pull out his pic line on Monday because the cultures were still coming back as positive. So now he has two IV’s in his hands, which interventional radiology had to place. Because the transport team tried 3 times and couldn't get anything. I was sooooo mad. From now on I am asking to go to interventional radiology for IV placement. Thankfully Caleb has had 3 days of negative cultures so on Monday he is going to get another pic line placed. And hopefully get out of here that week, but we aren't talking about it at all. Well that's pretty much it from this end. Please just keep us in your prayers and pray that Caleb gets the call soon. Thank you!

Wednesday, May 31, 2006 11:51 AM CDT

I guess we need to stop saying the word HOME around Caleb, because every time we get close there is always a set back. He has been doing so well and then Monday he spiked a temp and started having bloody output again. My mom stayed with him on Sunday night to give me a brake and Monday she said that he wasn't acting him self and felt warm. So they took his temp and it was 101. They drew blood cultures and here we go again with another line infection. He has gram variable rods growing from just one port of his pic line. They started him on two antibiotics and so far he has not spiked another temp. He actually feels really great! Very wild. His bag keeps leaking everywhere because he is so active and it is just a mess. I was going at least 4 days with out changing it and now it last maybe 1. Needless to say it is not fun! Well Caleb needs a bath and wants to go to the playroom so I will update with more news when it comes. Thanks for checking in on us today!

Thursday, May 25, 2006 6:01 PM CDT

Still not much going on here! Hopefully if Caleb continues to do well then we will be out early next week after the holiday. Dr. Karpen wants us to be home before he has to go to Pitt. for a small bowel conference on Thursday. The plan has been going okay with cutting the time that Caleb is on the Octeitide. So far no bleeding! As long as he has no fevers and no bleeding we are out of this joint! I will update if anything changes! Also I wanted to give a congrats to our friend Olivia! She just got her stoma closed and is doing wonderful! Take Care!

Monday, May 22, 2006 6:00 PM CDT

Just wanted to let everyone know that everything has been okay! Jared was able to stay with Caleb this weekend, so I got a much needed brake. He had a pretty uneventful weekend! So that's good for a change. He did start bleeding AGAIN in the middle of the night and is getting a blood transfusion right now. He isn't bleeding anymore, but his blood level was really low, so that is why they are transfusing him. Every time they try to go down on the dose of his octreotide medicine, he starts bleeding. So we are going to stay at a high dose and just take him off of the medicine during the day. That is how they did it in Pitt. We are going to try that tomorrow. That's about it, so I will try to update again this week if there is anything to update! Take care and thank you for always checking in on us!

Monday, May 15, 2006 10:42 AM CDT

Good morning,
This weekend went okay, except for all the poking and prodding that went on. We hoped and prayed that his two IV’s that he had in his hands would last till today. But unfortunately that was not the case. Saturday they had to pull one out and give him another one in his upper arm. Then Sunday the other one in his hand blew out so since he is such a hard stick they had to call the ICU transport team to come put an IV in. So now he has one in his leg, right above his foot. OUCH!!! My poor baby! It's so sad that he has to endure this type of pain, but he sure is one happy boy when he is not getting messed with. Now when the nurses are messing with him he says, "I sorry, I sorry ". Guess because that is what the nurses say when they are about to sick him. Well today he is suppose to get a PIC line placed, which is a line that is tunneled through a vein into his heart from the upper part of his arm. This type of line is less risk of infection, but the reason why they are doing this instead of a Central line is because his white blood cell count is up and they do not what him to get another infection. So until that number comes down, he will have a pic line. If he does okay with it, I may just see if he can just have the pic line, because he can go home with that type of line. I just don't want him to keep getting line infections. Sad, the nurse just came in to ask me something and Caleb said, "bye bye". He really can't stand anyone here, but can you blame him? Well we do not have a time for the line placement; all we know is that it is going to get done today. The surgery doctors are actually the ones who are going to do it, instead of the pic team or interventional radiology. I will try to update after the procedure. Please pray that everything goes smoothly today! Hold on................................
Gosh it is sooooooo frustrating here! Now the GI doctors are saying that they do not want him to get a pic line today if the surgery team is willing to place a central line in a few days when the white blood cell count goes down. He is at 18 and they want him to be at 12. So now everything is on hold till then. I tried to argue and say that we should just put the pic line in today, but they really don't want him having surgery twice this week. And frankly either do I. One doctor says that the pic line is less risk of infection and now another says it's not. I hate it when everyone is on a different page. His IV’s are working okay right now, so please pray that they continue to work and he does not have to get stuck at all this week.

Thank you and take care!~
~Korri~

Wednesday, May 10, 2006 7:42 PM CDT

Well where I start! Good news or bad news? Guess the good...... Caleb has not had a fever for 2 days now and his cultures have been negative the last two nights. He did spike a temp after the line was pulled but that was it. He asked for chips last night and ate some teddy grams. This is a good sign, because he hasn’t wanted anything since last Thursday. The bad news is......... his cultures have grown another type of gram negative rods, which is called klebsiella. It is a nasty bacteria that is common in people with weakened immune systems who are hospitalized, which we know Caleb is. He had all the symptoms which were fever, chills, and now coughing. When he got sick after his birthday, they automatically thought that it was just ecoli again and restarted the antibiotic that he was on before. But this Klebsiella pneumoniae can only be treated by certain antibiotics and the one he was on was not right. So as soon as they found out which stain of the bacteria he had, they started a very strong antibiotic called gentamiacin. Which given is high doses can cause hearing loss. So they are being very cautious and checking labs to make sure he does not have that much in his system. He started coughing today, which is a symptom. He is sooooo miserable, I feel so sorry for him! I try to comfort him, but it doesn't help much. Tonight he is okay, considering he just had to get poked in the foot for more blood cultures. Please pray that these are negative, since he has to have 3 negative cultures before surgery will place a new central line. Tonight would be number 3. So hopefully by Friday he can get a new line and will not have to be poked anymore. He is a lot better about them sticking him now, but it is still very painful to watch and hear him saying "real quick" and "oh no" over and over. My poor baby has gone through so much and I feel so helpless. Parents are suppose to protect there children from pain and harm and I feel so useless right now. Please pray for our strength as we try our best to get through this hard time. He is still on a little bit of oxygen, but we are trying to get him off. He is being so great through all of this. He doesn't pull at his lines and actually wants the nasal canula in his nose. If I try to take it out he gets mad and says "on no" or "wait". I don't know if I mentioned before that his new favorite word is "WAAAAIT". He has to say it with everything. This is cute but kind of sad, because that is what I tell him when the nurses are messing with him. So because he has heard it so much, he applies it with everything. Well there has just been so much that has gone on since we came back from Pittsburgh that my head is about to explode. Jared did come up tonight so I could get a short break and go out to eat with my sister. It felt great getting some fresh air and eating some good food. Caleb is on isolation, which I haven't asked if it's just till the cultures clear or will he always have to be in isolation? This just means that he can go on walks around the hospital; but he just can not go to the playroom or library. He loves to do both of those, so hopefully it is just till the infection clears up. Well time to give meds and try to get some sleep, so off to bed we go. Please just pray that we get over this hurdle quickly. Because even if he was next on the transplant list, he would not be able to get new organs because of the infection. Take Care!
~K n C~

Tuesday, May 9, 2006 1:07 AM CDT

Prayers needed........
Caleb is not doing to well right now! He is very sick and still growing ecoli from his blood cultures. Friday he spiked a temperature of 104.6 and was just shaking and throwing up. It was really scary. Jared was here and we have never seen him so sick. Saturday he acted a little better but then right when they hooked up his fluids for the night he spiked another temp. It's really strange, when ever they flush his line, he gets really sick about 30 minutes to an hour later. Jared was here on Sunday and Caleb was acting okay, running around the halls and just seemed to feel better. Then this morning he spiked a temp of 103.0, so they decided to pull the line. They took him at about 3:30 today and he was in there for about an hour. Surgery went well and he didn't have a temp afterwards but then about 7:30 he spiked one. Because they pulled the line he now has 2 peripheral iv's. One in each hand. So they needed to do cultures again because of the fever and they had to stick him. But believe me I put up a fight with the doctor. I told her that they had one shot and if they didn't get it, then they are trying from him iv's. Also I told her to find a good nurse that knows how to draw blood. She agreed and the charge nurse came into do it. Thankfully she got it in the first try and poor Caleb who usually fights the whole time, just laid there. He feels soooooo bad. We know that he is growing ecoli, but I really think that something else is going on. I did just have them do a viral culture to check for the flu and RSV, since a couple of Caleb's cousins who where at his birthday party, now have the flu. So maybe that's what is making him so sick. We will not have the results till tomorrow. We gave him Tylenol for his fever and it hasn't budged, so we gave him Motrin. I don't even want to go to sleep, his breathing is fast and his fever is just so scary. I pray that his bowel is not leaking stool into the rest of his body and just making him so sick. Please keep him in your prayers he really needs them right now. Thank you!

Friday, May 5, 2006 12:08 AM CDT

Wow,
Having a birthday party at the hospital was surprisingly a hit. This was the first year that Caleb actually had fun and was sooo excited to see his friends and family. When his two little friends Chance and Branson arrived the look on Caleb's face was so cute! He ran over to them and pushed them gently into the room, grabbed some cars and went and handed one to them. I have never seen him ever interact with kids his own age. I think we all had tears in our eyes to see him so happy. It was like he knew he had friends that he hadn't seen in awhile. And he was sharing his toys. It was just priceless! After everyone arrived we sang happy birthday and he looked so cute. He was just smiling and had both his hands on his chin. Last year he plugged his ears the whole time. We had the party in the conference room here on the floor and it was perfect. I worried about not have enough room, but it was actually great. While everyone ate pizza he opened his presents and was very excited. He got lots of Thomas things. Thank you to everyone who was able to make it and help in making Caleb's day so special. BUT........ Since there is always a BUT in our life...... After everyone left and I was getting ready to get Caleb in bed he started shaking and shivering again like he did a couple of weeks ago when he had the line infection. We took his temp and it was fine. Then about 30 minutes later we checked it again and he was 101.7. WHY...WHY...WHY! I really don't know why I even ask why anymore! Can't Caleb please just have a brake! I mean on his birthday? COME ON! They restarted his antibiotics, which were finished on Wednesday night and started him on another one just in case. They took cultures, which are still pending today. I don't know what's going on. Maybe his line infection really wasn't gone from before and then when they stopped the antibiotics it just showed up again. The antibiotics could have just been camouflaging the infection. Or maybe his bowel is leaking stool into the blood stream (which is called cross contamination). This morning he sat up in bed and wanted to play with a temp of 100 but then I guess he started feeling bad so he laid back down. He now has 101.3 and we can not get it to come down. We tried Tylenol and Motrin and it's still the same. I hate line infections, but hope it's nothing more serious than that. With his bowel being so friable and unhealthy I just pray that he is not leaking stool inside his body and that is why he is sick. I am actually supposed to go home for the weekend but now I don't know if I want to. Jared will be here, but I know when I was little and I got sick I always wanted my mom. I just know that I won't be able to relax this weekend knowing he feels so bad. Hold on....... Okay, some junior volunteers just stopped by and gave Caleb an Astro's build a bear. The little girl who made the bear brought it in here for him, but he is asleep. People here are amazing! There are always special people coming by with crafts, toys, games, blankets,etc... Well my hand is hurting from typing, but I will try to update again soon. Also, I am going to try to put new photos up of Caleb this weekend! Take care and hope you all have a great weekend. Please keep the prayers coming!

Just got word that Caleb's cultures are growing gram negative rods again. So the question is why did it come back so quickly. Was it always there? or is his bowel leaking again? They are going to talk to our pitt doc's to figure out a plan!

Tuesday, May 2, 2006 7:28 PM CDT

Hi,
Caleb is taking a really late nap, so I need to wake him up. But wanted to get an update out first. He is doing pretty well. The line infection is completely gone and he only has 2 more days of antibiotics. He stopped bleeding on Friday and then started again on Saturday. They went up again on his octriatide and left it running for 24 hours. It finally stopped yesterday and he has been fine all day today. They want to get us discharge to go home soon, but we still do not have anything lined up for transportation to Pittsburgh if he was to get the call. Texas Children's will not fly him if he is outpatient. They say that it is not there responsibility cause he wouldn't been their patient at the time. What ever! He has been there patient since he was born so that's really annoying. So now we have to come up with a plan and have something lined up for transportation. During the day wouldn't be an issue because we could probably jus hop on a commercial flight, but last time we got the call at 10:30 at night and there are not many flights that fly to Pittsburgh in the middle of the night. So we are kind of stuck here till we figure something out. Any ideas you all would have would be greatly appreciated. Please contact me by email if you know any options. Other than that it has been okay! We are going to celebrate Caleb's 4th birthday on Thursday. Any one how wants to stop by are more than welcome. It will be pretty tight if we are all in his room, so I may see if there is a conference room or something. And hopefully when ever he gets out of the hospital we can have a party that he can enjoy more. I will be going home this weekend for another much needed brake. Hope you all are doing well.

Congrats to our friend Logan and his family with the new arrival of a baby girl on April 27th. Welcome little miss Avery!

Friday, April 28, 2006 6:40 PM CDT

Hello All,
Just wanted to inform all of you what has been going on this week. Caleb's line infection is almost cleared up. They have 2 negative cultures and they need 3 in order to say it is all clear. Tuesday evening he started to bleed and had to have a blood transfusion. They went up on his octriatide (which is a medication that is used for gi bleeds or high output). Thankfully he has stopped the bleeding, but they are not sure for good. Caleb's bowel is so friable and unhealthy that it could bleed at anytime. We just have to make sure that he has a lot of antacid medication on board. He did have a biopsy yesterday of the inside of the bowel and today thankfully it showed no rejection. They wanted to do the test because he was bleeding and had high output and those are both signs of rejection. So that's about it he is sleeping right now and I have to wake him up or else I won't be going to bed tonight till about 3am. Hope you all are doing well and have a wonderful weekend. Take Care!

Tuesday, April 25, 2006 4:53 PM CDT

Caleb just fell asleep so I had a chance to update his page! Sorry it's been a few days, but it took me awhile to figure out why I couldn't log on to the internet. There was something wrong with Net zero.. Anyways, I had a great break this weekend. I got to sleep in my own bed, see my friends and the best was on Saturday when I got to have a full body massage, thanks to my friend Jessica! Caleb did fine all weekend with Jared and from what I understand he didn't even miss me that much. Hate to say it but, I think he needed a break from me as much as I did from him. Well on Sunday when I got back he spiked a temp and was vomiting. They did blood cultures and unfortunately he is growing gram negative rods in his line and his venues culture that they took from a vein in his hand. It is a type of bacteria that usually can not be cleared, so they are deciding if the line needs to come out tomorrow. Gram negative rods is something that you can get in none sterile situations, like someone not washing there hands or maybe his bag leaking on it. Not sure what happened just know that we need to be careful. This is only his second line infection his whole life and I hope it is his last. He was okay the rest of the night and then on Monday morning it started again. Except this time his temp shot up to 103.5. It was scary; he was shaking and just holding his body so tight. They actually moved us down to the PCU, which is a step above the ICU. H was fine the rest of the day and now we are back up on the floor. He is back to his normal self except for his color looks a little grey and his eyes look sunken in. Well his bag is leaking so I am going to change it while he is sleeping. Nine more days till Caleb birthay, we are counting the days I will update soon.

Friday, April 21, 2006 0:56 AM CDT

HOME SWEET HOME! Well TCH that is. We flew in last night about 10! The flight was pretty smooth and Caleb did pretty well. He didn't want to sit on the stretcher anymore so he kept saying "off, off, off" It was kind of funny watching the crew, try to entertain him. Caleb was not having it, so they let him get out and sit in my lap almost the whole flight. You could tell the Dr. was getting annoyed, because he kept asking the nurse how much longer the flight was going to be, even though he had a watch on. When we got to the hospital, we had a nice surprise with Gran waiting right outside our door. It was great seeing Caleb's face when he saw her. Thanks mom for surprising us! Then today my sister came up on her lunch brake and then dada was able to visit. Anyways, he is sleeping right now, but just wanted to say a quick hello and let you all know that we got here safely. And enjoying every minute of it! I am actually going to be going home home this weekend and get so much needed rest and visit with family and friends so can't wait for that. Good night!

Wednesday 19, 2006 @ 3:00 P.M.

The kangaroo crew from Texas children's are going to be picking us up around 5 or 6. Can't wait! See you all soon!

Wanted to let everyone know that the plans are set for our trip back to Texas. TCH is going to pick us up tomorrow. We do not know what time yet, but hopfully we will find out later today. Caleb is playing in the play room and I am about to go to the post office to mail a big suit case back, because I have way to much stuff here and I know that they will not let me bring it all back on the small jet. Caleb's feeling great and back to his normal happy self. Well gotta go, but hope to see you all real soon at HOME! Bye!

Friday, April 14, 2006 2:21 PM CDT

Just want to say hello to you all. Caleb is playing here in the playroom and just being a mess. The last couple of days he has been so hyper. The nurses were asking me what I gave him, because he has been running around like crazy. Not sure what is going on, hope it's just him feeling good and not one of his meds making him like this. It's great seeing him so happy and running around, but I am getting exhausted by the end of the day. Oh well, keeping me busy I guess. Well our doctor here finally talked to our home doctor and he said that he was okay with the idea of us coming to TCH, but he wasn't going to be on service next week so he was going to talk with the doctor that is going to be there and make sure that he feels comfortable taking care of him. So the plan is pretty much on for Tuesday or Wednesday. They are just trying to see if TCH is going to pick us up or if the transport team here will take us back. Well I hope you all have a wonderful Easter! Take Care and I will update as soon as I know something!

Tuesday, April 11, 2006 1:44 PM CDT

Today we got some pretty good news from the doctors. They are thinking about sending us to Texas Children’s for follow up care. They aren't doing anything here that we can't do at our home hospital. They are willing to send us out patient, but I think they are feeling that it will be pretty overwhelming for me not having anyone here to help. I know that I can do it, but just a little boring sitting in the hotel all day. So our head doctor here is going to send an email to our doctor in Texas to see if he feels comfortable with taking care of us. If it is okay then we will be coming home at the beginning of next week. Then hopefully they can work on getting us home home, since I have plenty of support at home. So we will know something in the next 24 hours or so. I will let you know. He is still bleeding a little bit. It's like it stops for a day and then starts again. Well we are actually in the play room right now. Caleb is playing pool with a little boy who keeps trying to talk to him and he is totally ignoring him. Caleb Caleb Caleb, what are we going to do about you ignoring people? Silly boy! Gotta go, Caleb is making a mess in here.

Friday, April 7, 2006 7:39 PM CDT

One good day, one bad day! The story of our life! Caleb started to bleed a little bit from his stoma last night. It wasn't that much blood, but just kinda odd since he hasn't bleed from there since he has had the thing. It is always the fistula that has issues. The other day they stopped one of his antacid meds that he has been on for 2 1/2 years now. So, I think that may have been the cause for the bleed. Well then about 7:00, he stopped bleeding from his stoma and is now bleeding from his fistula. Oddly, the doc's are not concerned at all. They say that this is to be expected, because of the fistulas and that his bowel is just so sensitive right now. The nurse drew an H and H to check if he needed blood and it was actually great. But I bet by morning he is going to need some, because he is putting out quite a bit. He fell asleep and hopefully for the night. My back still has been hurting pretty bad, so I think I just need some sit down time. And now is a great time. I am betting that discharge for Monday is off, but we will see. He was doing so great and I was feeling like he was on the right track for healing, but now he just can't catch a break. I am afraid that if we do get out of here then we are just going to be right back in and actually I have way too much stuff to be lugging back and forth. The hospital life sucks, but I am pretty content here in our own room. I feel comfortable and there is help here if I need it. Doesn’t look to promising that we are going to be out of here by Caleb's birthday on May 4th. Guess we are going to just have to make the best of it. Won't be the first birthday that we had to do that for. Well, I'll update later! Take Care!

Wednesday, April 5, 2006 5:55 PM CDT

Today was a better day! Although this morning Caleb vomited twice. It happened after I gave him some meds. He didn't want breakfast, so I think that him having an empty stomach just caused him to be sick. Other than having to do some dressing changes, today was actually pretty calm. He is feeling much better and even had energy to go cruzin the hallways today. The playroom was open and he wanted to go in, but they wanted him to wear a mask. And he wasn't having it. The Child life lady and my self even put one on thinking he might, but he still wouldn't go for it. So we couldn't go in. We did however go to the library, but our visit was cut short when he kept coughing and there were other kids in there and I didn't want Caleb to spread his nasty germs. Tonight we have been cruzing the halls in a fun wheelchair. Caleb loves to go riding and then he even gets out and I sit in it and he pushes me. That's about how much our fun consists of around here. It was funny though and everyone who walked by was laughing. I took some really cute picture of him and I wish I could put them on the site, but I do not have the program for my camera on this computer. Now they are saying possible discharge on Monday. Which is fine with me, I want him to be over this cough before we leave. He is on so many meds now by mouth that it takes me all day to give them and then I have to keep him up all night to give the night meds. So I complained and they took him off of three of them. One of them, he has been on for 3 years, so that's a little weird. Most of these kids have Mickey buttons (which is a little button that goes into the stomach that you feed or give meds through.) His actually fell out 2 years ago and he has done fine since, so they never wanted to give him another one. But now would actually be nice, that way we don't have to torture him with all the yucky tastes. But I just have to keep reminding my self that it's not normal to have a button, actually what is the meaning of NORMAL. I wish I knew or could remember what it's like. This actually is a life that no one should ever have to endure. But it's my LIFE, so I have to do what I have to in order to survive it! Take Care!

Also I have been meaning to put our new friend Tyler's webpage address on here. He needs a small bowel, liver transplant also, so if you would please stop by his site and add him to your prayers at night! Thank you!
www.carepages.com
sign up then his carepage name is "transplant4tyler"

Monday, April 3, 2006 7:57 PM CDT

Hi,
Today brings Caleb not feeling very well. He has had a cough since last Thursday and it has been getting worse. He is just miserable, sleeping then coughing, sleeping then coughing again over and over all weekend long. I am just really down today. I think our nurse noticed it today too, because she bought me lunch. I tried to offer her money, but she wouldn’t take it. I'm telling you the nurses here are so wonderful. They really care and make me feel like I am not alone. They have been really good to us. And I need that, ya know? I just feel as if the whole world is moving forward, while my life is staying still. I have realized how much I used to take advantage of things. For instance, fresh air, hanging out with family and friends, going out to a restaurant, working, or just being in the privacy of my own home. "When are things going to get better?" I think I ask that question everyday. And yet everyday Caleb has to endure one more test that just makes him very upset. It seems like we have a few good days and then BOOM we get hit with a set back. I am tired of set backs. I couldn't even leave this room today. I usually am able to get a little bit of a break when Caleb sleeps, but with all the coughing he closes his eyes for about 10 minutes and then is up again. So tonight my dinner consisted of a bag of chips and a snicker bar. YUMMY! Sorry I don't mean to be so negative, but today it just hit it me! The home care company came out today to show me how to work the pumps that I will be using outpatient. It was fairly easy and almost like the ones we had 3 years ago. I was just a little overwhelmed at all that I am going to have to do, since we don't have any nursing care. I know I can do it, but it's just a lot. They are also doing a 24 hour kidney work up on Caleb. Some of his numbers have gone up, so they just want to make sure that they are functioning properly and that he won't need a kidney transplant as well. Gosh, what next I ask? Please pray that his kidneys are working fine and that he starts to feel better. Well I better go, Caleb is crying for me to lay with him, so I will update soon. Take care!

Saturday, April 1, 2006 7:17 PM CST

Hello,
Well the plan is still on for discharge early next week. I still need to call the hotel to get that set up. The discharge facilitator came in yesterday and said that she was having trouble finding a home care company here who would take our insurance. One company said probably, but can not get nursing care. This is fine, because all we would need a nurse for is to draw his labs on Mondays and Thursdays, which I can actually do myself. I have done it before and it's pretty easy, but it's just that we would have to draw them up, take a shuttle to the hospital, then back to the hotel and then wait for clinic that day and then go back the hospital and so on. It's just a lot of running around to do with Caleb. But guess I will give it a try. I am looking forward to being out of the hospital; it's just going to be boring. Not having a car and trying to entertain Caleb all day, I think will be difficult. Well I guess the finally result from Caleb getting sick the other day, was that he had an illeus(not sure on the spelling) but it's where part of your bowel freezes up and there is no motility to help pass things through. So everything just backs up and you eventually throw up. Makes sense, but he had a fever with all that as well, so I think it was some type of virus. Well that's it for now! Thank you again for all your prayers.

Wednesday, March 29, 2006 12:29 AM CST

What fun today brings! This morning at 7:00am Caleb decided to spice a temp. Last night before bed his output changed to a maroon color, meaning that there was blood in it. Then it got better through the night, but I could tell that something was starting to brew because he kept tossing and turning and acting like something was bothering him. They decided to do an x-ray, to check his lungs and abdomen. They all looked good except his stomach was a little distended. The x-ray techs were so annoying today. They had to come in 3 times, because they couldn't get a good picture. I was so mad! After the second time Caleb was so upset that he threw up. Then it happened again the third time they came. And the girl had the nerve to say "is he okay". Uhhh, does he look okay, I wanted to say. But I just went with "NO"! Anyways, we just got back from having a scope. It looked good, but we will see tomorrow what the biopsies show. They are thinking it may just be a stomach bug, because that is going around up here. They did have to give him another ng tube down his nose to help drain all the bile in his stomach. It was awful having to hold him down for that. I wouldn't watch, but the sound sounded like he was drowning. Just awful. He is supposed to get a central line placed tomorrow, but that may be cancelled. Well he is asleep right now, so I am going to try and jump in the shower. Just please say some extra prayers today that my baby gets better. It is so heartbreaking how fast things can take a turn for the worse. For the last week he has looked great and in such a great mood. Well just keep praying for him, that is all I can ask. Thank you!

Tuesday, March 28, 2006 4:14 PM CST

Hey there,
Not too much to update about! Just that the plan is for Caleb to get a central line on Thursday. For those of you who do not remember a central line is a permanent IV line in his chest that is in one of his main veins going to the heart. He needs this since he will be on TPN every night and for all the labs draws he will need weekly. I am very bummed about this, just because it seems like we are taking so many steps backwards. But he is in good spirits. He looks great and his bili is coming down nicely. The bili is a liver function and when the number is high then he looks very yellow. Normal is 0 and he is 2 so his color looks good. When he was transplanted 3 years ago his was 20. So you can imagine, he looked like a little chubby pumpkin. They wanted to send us out on Friday to the hotel, but the discharge facilitator has gotten nothing ready, so I don't see that happening. I told them Monday would be better anyway. I am excited to be out after almost 2 months, but not looking forward to all the pumps, meds, dressing supplies and changes. Our hotel is going to be its own little hospital with all the med supplies. I think the first week is going to be hard. Jared and I never had to take care of Caleb before transplant, because he was in the hospital. So doing TPN at home is going to be a challenge. But I'll do anything for my baby. He was so cute today. He was playing on the other side of the room and I was leaning over in the closet to get something and he came running over to me and hugged me so hard and gave me a kiss. I was just in heaven. All the hard work I do to take care of him pays off when he does something like that. I have been in a lot of pain lately with my back. I leaned over to pick him up the other day and my back just gave out. It went away for a few days and now the pain is back. I can hardly do anything. He always wants me to pick him up, so it is going to hard not being able to do much for awhile. Then the other day, my knee popped and I had to fall down on to the bed. My bore body is falling apart and I feel like an 80 year old women. Guess that is what happens when you don't get much exercise.. Well I am going to take him for a walk around this great resort. I'll update later. Take care and keep praying for us!

Thursday, March 23, 2006 9:37 AM CST

Hi,
We are actually about to leave on pass to go shopping at the waterfront with Lisa, our new friend we met at the hospital. Hope I don't spoil Caleb to much on our trip, but if I do, owell he deserves it. He is in a good mood today. Full of energy and he looks great. For awhile there he was starting to look like he was shriviling up to nothing. Also I want to thank all the nurses up here in Pittsburgh on 7north. They have just been great to us and I can not thank them enough. The other night one of our favorite nurses Alice, brought in bags of groceries for us. To nice and we are forever greatful. Then today another favorite of ours brought Caleb a Thomas the Train roundhouse playset and a new purple train named Culdee. He is in heaven right now. He has all of his 8 trains lined up on the track and keeps going round and round with them. He is starting to get a little frustrated though because there is too many to stay connected when they go around on the track. He keeps saying "OH NO"! Well we better go now, cause we have to be back by 8. Bye for now and hope you all have a great weekend.

Finally I can get an update out! Caleb is off of TPN for 12hours a day so it isn't always easy to have time to sit down and type an update. I would do it if or when he takes a nap, but that time is for me to take a shower, or go get something to eat. So please bare with me with getting journal updates out to everyone.
Caleb is doing pretty well. He is officially on the transplant list. The test they did to check for line placement looks good. All of his veins are open. This is a good thing, because a lot of these kids have issues with no line access. He is free from 10 to 10 so we try to keep our self busy. He loves to go into the play room, but I have been trying to stay clear from there, because I heard that a few kids here have the lovely ROTO virus, which is very nasty. We both caught it after his transplant 3 years ago and I was soooo sick, couldn't even get out of bed. So I am just praying that we do not come into contact with it. I really don't know how I would be able to take care of Caleb if that happened. Anyways let's stop talking about that. Yesterday was a pretty good day for us. Caleb got the ng tube out of his nose, so now he has to take all his meds by mouth. He is doing okay considering he hasn't taken them like that for over a month. They did start him on potassium, because he level has been low. Mainly because he is putting out so much out of his fistula bag. He eats and drinks and it all just comes out the bag. Not really sure if he is absorbing anything at this point. I am going to talk to them today about that. He is so cute he loves to do dot to dots now and he is sitting up in bed doing them and eating French toast sticks. His speech is just progressing so nicely. He gets speech everyday now and PT works with him as well. I am going to try to get OT for him as well. I like him getting all this therapy, but sometimes they come at bad times and he doesn't want to do anything. He is finished with his IV antibiotics at the end of this month. Also we finally were able to get out on pass yesterday thanks to Cindy and Makenzie. They picked us up last night and we got to have an exciting evening going to Target. I got Caleb some new things and Cindy and Mak got him this really cute play do set. Thank you guys soooo much we both need to get out of this place for a little while. AHHHHHH, I am going crazy here. Since I have started typing this we have had 6 different people come in here. Guess that's the hospital for ya, no privacy at all. Caleb did just get some pictures taken for a brochure for the hospital. Wait let me say, 7 people now. Just crazy! Anyways, some people just came in and took some pic's of him, it was kind of like a photo shoot, they were just taken all kinds of pictures of him sitting on his bed. It was funny; when I told him to say cheese he looked at the camera and gave this really funny cheesy smile. I am not sure if they captured it, but everyone laughed. Also the nurse practioner just came in and said that if he continues to do well then we can be out patient as soon as early next week. That sounds great and all but very stressful for me. Being here by my self is just going to be hard. Cause they want to send him out on TPN and lipids with extra fluids at night. Now he has two bags that leak and I will have to change the dressing every couple of days. He will have a central line that the dressing will have to be changed once a week and he wouldn't be able to take baths anymore because it can't get wet. I know I could do it, but I just know it will be very hard and stressful. Not having anyone out here to help me scares me to death. No body wants to be stuck in the hospital, but it is much easier for me. If I need help it's right here. Or if I need to get food or go to the store, some one is here to watch him. Not having a car here would be really hard. If I stayed at the Residence Inn
then I have a shuttle that will bring me places, just in the area but there isn't any families there we know. Everyone we know has apartments at Ronald Macdonald, but that's kind of far from here and they only have shuttle at 8am and 8pm that only takes you to the hospital. Hold on.......Okay now let's make it 8 people that have come in here now. They are having a big child life celebration with dinner and stuff in the cafeteria so I think we'll go to that. Anyways, I am going to try to get Caleb's hair cut today, he definitely needs it. Well I better go take a shower cause I feel like a bum, I will update when I can. Thanks for checking in on us and please keep the prayers coming.
P.S. Forgot to add that our address is at the bottom of this website for those of you who have been asking me! Take Care!

Wednesday, March 15, 2006 3:14 PM CST

While Caleb's takes a nap, I thought it was a good idea to get in a quick update. He had his scope this morning at 8:00am and all went well. It is really sad when you go to the pre OP area and the recovery area and everyone in there knows you. Like the nurses, anesthesiologist, doctors, and the admission ladies. It's feels good that everyone knows who we are but very very sad. I waited up in my room while Caleb was having the procedure and the doctor came up and said that everything looks good. Which it always does on the inside of the bowel. Anyways, they took biopsies and hopefully they will have them back tomorrow afternoon. Caleb has always been sleeping after a procedure in the past, so this time I took my time and finished eating my bagel before I went down to recovery. Well when I got there and walked in the door, he was sitting up in bed very wide eyed and just looking around at all the kids and people in there. It was very loud with kids crying and Caleb was just watching everyone. He looked cute. With all the other procedures in the past he has always just been sleeping when I get in there. So I actually felt bad when I decided to finish my bagel instead of rush right in there. Just a minute.......... Okay the nurse practitioner just came in and filled me on what was discussed in rounds, since we were downstairs getting Caleb's hearing test done. Which was great by the way? His ears are OK! Yeah!!! So all those times when people try to talk to him and he doesn't respond it's just him ignoring, just like all men do so well! Just kidding! Anyways, she said that they are going to get all the blood work they need in order for him to be re-listed. Yes, I said RE-LISTED! His Chronic rejection may never go away and the bowel that they resected is just so thin that it just keeps bleeding. He will for sure be listed for small bowel and liver, but they are starting to think that it may be better to list him for a stomach also. His stomach is fine right now, but if he has another transplant they may find that where his stomach and intestine are connected that there might be to much scar tissue to connect him again. But they won't know for sure until they go in, so they are listing him for the whole package just in case. I didn't like it when they told me that, but some of the kids I know here who have had the stomach also, are doing pretty good. And for some more exciting news, they are going to start feeding him as soon as he wakes up from his nap. I am going to start with clears for right now and then later tonight try to give him some milk. I guess also we will see if he starts to itch like before. I hope not because he loves his pediasure and I know all the other milk like that, taste really yucky. PT came to work with him today and of course he wouldn't do anything with her except cry and try to get in his stroller. I think he was just really tired from the scope so early this morning. Alright his dinner tray just came up. Yummy, it consists of cold chicken broth, blue Jell-O, apple juice, and ginger ale. He won't eat any of that, I don't blame him really. Also, the speech therapist came up yesterday and Caleb wouldn't perform for her either. It bothers me because he can say a lot of words, but when they try to get him to talk he won't and I feel like they think I am lying. Anyways, they want to work with him everyday if possible, so I am happy about that. I can't wait till I hear him use sentences. Oh yeah, they also have him on the schedule for a liver biopsies on Friday morning. They may do it, they may not just depending on his liver numbers on that day. Also he is going to have another Echo Cardiogram done just to make sure everything looks good and while he is in the IR for his liver biopsies they are going to do an ultrasound to look at his open veins, to make sure that there is plenty of IV access left. That is a problem with a lot of these transplant kids. He should be okay, because he has only had 2 central lines and that is great. Well, I think that's about it from this fun place. I will update tomorrow and let you all know how his feeds went Take care and God Bless!

Tuesday, March 14, 2006 10:15 PM CST

Hi,
Wow has it really been 5 days since I last updated? I am very sorry, but honestly with this computer acting up and my mom here I was trying to focus on having some ME time. Which I was able to accomplish yesterday. Having my mom here was just great, but unfortunately she left today. Caleb cried when she walked out the door, it was sad. Her visit didn't start out the best with Caleb having to have surgery again on Wednesday but overall it went well. Caleb got some much needed Gran time that's for sure. They colored Thomas the train coloring books, did puzzles, watched movies, and went on fun walks in this exciting hospital. It's starting to seem like he is bleeding every 3-4 days. He bled last Wednesday, then Saturday, and now unfortunately today. Saturday he bled a lot, but I just kept packing the site with gauze and putting lots of pressure and it finally stopped. I was actually able to get out of the hospital for awhile on Saturday night with another mom I met here, whose little boy is waiting for a small bowel liver transplant. It was her birthday so we celebrated as best as we could. Today Caleb has been okay! He was fine this morning and then this afternoon, he started bleeding again. Thankfully it only lasted for a little bit and now he is fine. He gets to be off of TPN for 6 hours now, so I was able to take him around for awhile. The gift shop is our first destination everyday and believe me I think Caleb has almost everything in there. Today he walked more then he usually does and actually seems to feel pretty good. Tomorrow at 7:30am he has an upper scope with biopsies, so I just pray that he doesn't bleed afterwards. He is now going to get speech and physical therapy while he is here, so that should be good for him to get out of the room for awhile. Speech said they want to try and work with him everyday during the week, which will be great. Now Caleb is going through his fake basket of fruit and vegetables and saying everything in the basket. He is so smart! Of course when the speech therapist came by to work with him he just cried and then fell asleep. Guess it's his way of blocking people out! Also if the scope goes well tomorrow, then they are going to start feeding him clears. He has had his ng tube clamped all day today and seems to be tolerating it okay. Well guess I should get Caleb in to bed and ready for his early morning. Take care and please keep praying for my baby!

Thursday, March 9, 2006 6:25 PM CST

I am so sorry that I have not been able to get an update out sooner. There has been something wrong with this computer. I was almost done writing an entry and the computer just went black, so I didn't feeling like writing it all over again until now. Well today was a good day. My mom and I were able to take Caleb to the playroom for about an hour, go down to see the train exhibit, went to the gift shop and even took him outside for some fresh air, which he enjoyed. I am sure many of you know that Caleb had surgery again for the 5th time in 3 weeks on Sat. He started bleeding again after the wound care nurse changed the dressing. He was bleeding all through the night and by morning his hemoglobin was 6, normal being 10. He had the biggest blood clots I have ever seen inside his bag. The wound care nurse was not here yesterday, so I had to take the dressing off myself. I have seen a lot of things that are not very pleasant, but this was probably the worst ever. They started blood and took him to the OR again. He was in there for about 2 hours. We were upset, because Caleb had been in recovery for 40 minutes and no one bothered to call us to come down. Rude! Anyways, the doctor found 3 small holes that were bleeding, so he decided to make one big hole almost like his stoma. We did take down the dressing today and it looked pretty good. Hopefully from now on he can just continue to heal and get better. The doctors came in the room and explained to us that Caleb had a type of chronic rejection where the outside of the bowel rejects instead of the inside and that it may never get better. So we had a long talk about re listing him for a second transplant. They feel that is a good choice to put him on the list but try to continue to heal him and hopefully when they start feed him his intestines will adsorb the food. With all the surgeries that he has had on his bowel over the last few weeks, it can cause them not to absorb food. Well I have to run and get our dinner before it is to late, so I will update soon! Till then, Goodnight!

Monday, March 6, 2006 10:58 PM CST

Today wasn't as great as yesterday! The doctors rounded pretty early, we had to change Caleb's dressing so that the doctor could see how the fistula site is healing. Well it looked okay, but when the wound care nurse started messing with it, it started bleeding again. Not as bad as Saturday, but still a scary site. We had to give him morphine to keep him calm, so Caleb basically slept most of the day. My plan to keep him off of IV fluids for 6 hours failed. His Bun (which is a kidney function) was up to 50, normal is 15-20. So that means that Caleb is dry and not peeing. So he now gets a bolus of fluids daily and is on TPN 24hours as well as normal IV fluids for 12hours. Being hooked up is going to be hard on him as well as my self. It was fun taking him out for a while yesterday and I was looking forward to my mom being here and getting to spend some time out of the hospital room. I did talk to the nurse practiconer and she said that we could probably just disconnect him for a little bit each day in order for him to get out of here. He is going for another liver biopsy at 8:00am since some of his liver numbers are high. Well I need to eat my dinner and go to bed now, so I will try and update again tomorrow. Goodnight and God Bless!

Sunday, March 5, 2006 11:07 PM CST

Finally a day with out any bleeding, surgeries, leaking bags, or cranky Caleb. Today was good; I talked the doctors into taking him off his IV fluids for 6 hours during the day. This was very nice, for the first time in over two weeks Caleb was able to get out of his bed. I pulled him in the wagon and we went down to the gift shop and stopped to watch the train exhibit, which Caleb loves. The only thing he is aloud to have is suckers, so we had to buy one in each color. I myself stocked up on some yummy snacks. Not really sure what this week will hold, hopefully nothing except Caleb getting better. I did make him walk a little tonight. He took about 10 steps and then he was done and wanted me to hold him. That's okay, one day at a time right? I pray that this week will be better then the last for everyone here. There has just been too many tears and sadness around here. I am happy to say that my mom is coming to visit on Tuesday and staying a week with us. Caleb is going to be so excited to see her. With everything that has been going over the last few weeks, Caleb hasn't let his speech delay worsen by not getting therapy. He actually has been repeating everything I say lately, it is so cute. Last night he really interacted with his nurse. They were going over letters, colors, and trains. It was so great to see them interacting together. Because that is just something that Caleb doesn't do. Well I need to get some laundry done, so blessing to you all and I will update soon. Take care!

Saturday, March 4, 2006 7:14 AM CST

So much for an uneventful weekend! We had an awful wake up call when the nurse came in saying that Caleb was bleeding from his fistula! She was in drawing his daily labs and looked down and saw lots of blood in his bag. She said that at 5am when she was in she did not see anything in the bag. There was a pretty good amount in the bag about 100cc's. They had to call Dr. Sindi in from home to look at it. Caleb was scared, which I was too, when 7 nurses came rushing in here. We did have to give him morphine in order to calm him down. So glad that Patty the wound care nurse found a bag yesterday that will work for Caleb, so that he does not leek everywhere from the fistula site. Because if not then today he would have been covered in blood. Not sure what is going to happen today. Dr. Sindi thinks that he is bleeding from where his bowel is stitched to the skin. And the stitch just pulled and came loose. I am guessing that this happened because of yesterdays scope. Forgot to metion that yesterday he had a big blood clot coming out of is stoma bag, so they decided to scope him, which was a big mistake. When ever you get a scope, the bowel fills up with lots of air, so I am sure that all that pressure just caused the stitches to pop. The scope from yesterday looked good, there was no sign of blood anywhere. Which is so odd. I am very upset and starting to lose hope with some of these doctors here. Anyways, they ended up putting a vaseline gauze around it and wrapped Caleb's stomach with a bind (like a big ache bandage) to see if it will stop any. But that is not helping, we just took the bandage off to take a look and all the quaze is just soaked with blood and lots of big blood clots. Which it is good that he is clotting, but why is he bleeding? Unfortuatly, we can not see an actual place for all of this bleeding. Dr. Sindi is going to come up in a little bit and decide what to do. He may have to just put a stitch in it, but if this does not work, he will have to go to the OR for the 4th time in 2 weeks to explore the problem. I just wanted to get an update out for all of you who are checking in on us this weekend and please say some extra prayers that this bleeding isn't anything major and a quick stitch will solve the problem. Thank you and take care.

Wednesday, March 1, 2006 4:20 PM CST

Caleb has been sleeping most of the day today, which is okay with me. This morning was a little hard on him so we had to give him morphine in order to calm him down for his dressing changes. Patty the wound care nurse came to change his dressing and we noticed that more stitches have come loose. I can't even start to describe how awful and horrifying it is to see this type of thing happen to your own child. I mean, we have been through so much and have seen a lot of scary things over the last 3 1/2 years but the site of his bowel poking out of his stomach is just heart wrenching. Most of the time when I look at it, I just want to brake down, but I know I need to stay strong for Caleb and I know if he sees me upset then he will get upset and scared. He does try to take a peek when I am changing the dressing and I can tell that the site terrifies him. His eyes get all big and he tries to feel what all the stuff is on his belly. The doc's and nurses know that I am getting frustrated so our nurse practitioner just came in and talked to me for a good 30 minutes. I do feel some what better getting some answers, but some of the things she could not answer and was going to ask the doctor tomorrow on rounds. It also seems like the doc's aren't all on the same page. Today when the doc who was rounding saw his belly, he immediately said that Caleb needed to go back to the OR and to get him morphine and adivan in order to keep him calm so that the pressure of him crying does not cause anymore damage to the bowel. For instance, another hole from all the pressure. When we told him that it has always looked that way, he changed his mind and decided there was nothing emergent. The doctor who rounded over the weekend saw the horrifying site and said that it looked fine and that is actually how he wanted it. Soooo frustrating. They did get an echo cardiogram today to check for any infection around his heart, since the pic line they pulled out was infected that went to a vein by the heart. I have not heard the results from that yet. There main goal right now is just to keep him covered on antibiotics and keep his TPN (IV food) going in order for his bowel to heal. They went up on the zinc in the tpn, because zinc helps the healing process. I asked them when we can start feeds and they said not until his ng (tube in his nose to his stomach) slows down. They do not want to feed him and have another fistula (hole in the bowel) occur again. Well I think that is all the fun that happened here today medically. On a happier note, we had some special visitors come by to see us today. A little over 3 years ago, when Caleb's pawpaw was on the airplane coming to be here with us for Caleb transplant, he met a man who lives here in Pennsylvania and they have stayed in touch ever since. Well today he and his wife stopped by to visit us and they brought Caleb an oversized beanie baby bunny and me a yummy dessert. Which I devoured the minute they left. Thank you both for being so kind to us and taking time out of your day to stop in to visit. That means a lot to us. It is also kind of funny because there last name is the same as our home town and what are the odds of that. Out of all the people in Pennsylvania. Pawpaw met a couple with our home town name. Caleb looks so cute right now, he is watching Nemo sitting up in bed eating the only thing he is aloud to eat, which is a sucker. A purple one to be exact. I had all different colors and he of course picked the purple one. He is talking some what through out the day but over all I think he is depressed with all that is going on. Like I said before he sleeps most of the day, I guess just trying to block all of this out. I don't blame him one bit. I would probably do the same. It is getting really boring around here, because a lot of the family's that we know have gotten to go home, so now there isn't anyone to chat and vent with. I am happy they have gotten to leave this sad place, but just wish there were more things for parents to do around here to keep them from going insane. I am very thankful to have this computer; I don't know what I would do without having any contact with family, friends and just the outside world. Well as you can see I felt like venting today, but my fingers are starting to cramp up from typing. So thank you all for listening and checking in on our life. Which let me tell ya, "It's a life" that no one should have to experience. Take care!
Korri

Monday, February 27, 2006 1:49 PM CST

Finally some time to sit down and update! Caleb just got back from having a CT scan on his belly to rule out an abscess and he fell asleep. The infectious disease doctors wanted him to have the test. He has been fever free since they pulled out the pic line yesterday. The doc's also said that Caleb will have to be on antibiotics for at least 28 days. So I am guessing that he has to be inpatient for that. Which is very upsetting, but what ever is best for Caleb I will do. Jared had to leave today, which is going to be hard not being able to just take a brake to get food or even a quick breather. Caleb was supposed to have a new pic line placed today, but they cancelled that till tomorrow. Which is okay, because I don't think he feels good today. He doesn't have a fever, so not really sure what is going on with him. This morning he was okay, sitting up and coloring in his Thomas the train coloring book that was just one of the many presents that our good friends Kara, Grant and Logan gave him. I was able to visit with them last night for dinner. Which was really nice not only spending time with them, but also just getting a little brake. They are so sweet; they also brought me three bags of goodies filled with snacks and drinks. I couldn't ask for better friends than that. Thank you guys again. I also got to visit with our other transplant friends Cindy and Makenzie. It was amazing to see Logan and Makenzie so grown up and doing so great. Well, it's snowing here today, which stops the idea of me running to blockbuster to rent some movies. The doc's also stopped two of Caleb's antibiotics because they think that is the reason why he is not peeing. I personally think he is just dry, so we are also giving him a bolus of fluids to see if that helps. I have been a little overwhelmed after coming up to the floor yesterday. It's just that down in the ICU you have your own nurse, and up here the nurses have 3-4 patients. Well Caleb just woke up so I will update again soon. All the encouraging words that you all have been sending us have just been a blessing. That is the highlight of my day to see the kind words that are being sent. God bless you all!!!

Saturday, February 25, 2006 0:11 AM CST

Once again I find myself updating a little after 1am. It's hard to sleep here. We did get a sleep room tonight. Not saying that these beds here make you sleep better but it sure beats the chairs by his bedside. Today was pretty uneventful as far as his health issues are concerned. We have been told that Caleb will go up to the floor tomorrow. This will be much more relaxing than the icu. Caleb has been battling a fever on and off all day. Korri just sent me a text message saying he now has a 102 fever. It seems they always want to jack with him while he is trying to go to sleep or early in the morning. So annoying! We found his bed to be soaking wet earlier. The culprit was a leaking catheter. Somehow it managed to get a hole. Not sure as of right now if they had to shove another one in. Korri made it to the sleep room to get some rest today but I managed to tough it out and stay with him all day. After all she needs it since I will be heading back home to work on Monday if all goes well. Its heart wrenching to see him pick at his stiches. He pulls his gown up and looks at it in what i would fear. Now that he is older he realizes it but just doesn't understand why. One day he is running around laughing and playing, then the next he is stuck in a bed with all these stiches and contraptions on him. Seeing this is the hardest part. He is really weak now. Not even stable sitting up by himself. He's a strong boy though and we all know he'll bounce right back. Transplant friends of ours are heading to Pitts(i feel the abbreviation is fitting) this weekend. It will be a good reunion.
P.S. Korri just texted (is that a word) me back and said that she talked the docs out of putting another catheter in so know we will be back to changing diapers. Thank God! Love you all. Good Night!

Friday, February 24, 2006 8:51 AM CST

Yesterday was pretty uneventful until around midnight last night. Caleb's heart was doing weird things on the monitor so they ordered an ekg and a x-ray. Come to find out, his pic line in his arm was migrating into one of his ventricles of his heart. But not to worry, it was easily fixed by pulling it out some. We are both pretty exhausted since we didn't get any rooms to sleep in last night. Instead we just sat in chairs by his bedside all night. No need in telling you all how fun and comfortable that was! Hopefully we can get to the floor today or at least that was the plan, and get some sleep. Caleb seems to be doing okay this morning other than his normal twiching. Not sure if thats because of pain or fever. It comes and goes but right now he doesn't seem to be in any pain. He's just laid up watching Thomas. He also has had a fever some time now. The docs keep sending blood cultures but we haven't heard anything back about those. That about wraps it up for now, hopefully today will be great!

Thursday, February 23, 2006 0:34 AM CST

Well I left Korri and Caleb in the ICU because I told her i will take the early shift with him so she can get some extra needed rest, however now i'm stuck in this little closet for a room and can't go to sleep so i decided i'll give her another break and update the journal since it's been some time since i have. As many of you already know, Caleb had his 3rd surgery in a week. I arrived at the hospital sometime around midnight last night. To my surprise Caleb looked "ok" until Korri pulled back his covers and showed me his belly. Boy did that bring back some awful memories. Most of the day he was in much pain and in and out of sleep do to the morphine. This morning i awoke early to be with Caleb and let Korri sleep in. He seemed to be more comfortable through the day. It wasn't until around 2pm when K noticed that his incision was leaking stool again. By 6pm he was in surgery once again. (wednesday) This surgery only lasted a litle over an hour but gave us enough time to get out and have dinner. When we returned Caleb was already waking up. Not long after he awoke Caleb was acting great. I mean like he didn't even know he had surgery. He was talking and being very alert for someone who had just had a surgery. We are praying that he continues to improve. Sure makes it easier on K and me. As far as his bowels go... the docs just don't seem to be too sure. They tell us of past cases similar to his with not so possitive results. We pray God just takes care of this. He does now have 2 stomas. We are hoping that the one he recieved today will be here only until the bowel heals. I guess Caleb thinks his belly is healed because Mr. Picky is steadily trying to yank his staples out. I guess i better get some sleep since i need to be up in 5 hours. We should be able to get another update out tomorrow so stay tuned for the latest even though grandma usually beats us to it in the guestbook. THANK YOU ALL FOR YOUR PRAYERS.

Saturday, February 18, 2006 2:31 AM CST

Well, Caleb is doing okay down in the ICU. The transplant floor are letting me stay up here for tonight and get some sleep, but before I do that I just wanted to update on his status. I am just going to be brief because I want some sleep, but he said that they did have to take out about 40cm of small bowel. Which is quite a bit. The bowel that was removed just did not look healthy. Very red irritated and very hard. They have not seen this sort of thing happen since 2001. May be from chronic rejection, so they took lots of biopsy's to tell for sure. They did give him another iliostomy bag in order to let the bowel rest, so hopefully they will be able to reconnect him soon after that. They say his large intestine is fine meaning that he will be able to be connected again, but they just don't know when. I do have to say the site of him when I walked into the ICU was very frightful. He almost looks like he did after transplant but this time he only has 6 pumps running and his belly is closed. He is still pretty out of it but they say that he is doing well and may be able to come off the vent tomorrow. They have him very sedated, but when I walked up and talked to him and held his hand, he squeezed it and wouldn't let go. Then when they had to suction out his vent tube he woke up for a second and saw me there. His nurse is one that we had 3 years ago after transplant and she is wonderful. It was funny because she has a son that loves Thomas the train like Caleb so she and I were talking about all the trains and names and stuff and Caleb's pressures kept going up. So the nurse was saying that all our talk about Thomas was getting him excited. Funny! Well I will update soon! Goodnight to all of you and thank you all for the kind words and all the prayers.

Thursday, February 16, 2006 4:48 PM CST

Prayers Needed
Okay, I just got the results back from the CT scan and now there is definitely a blockage. I didn’t get much information from the on call fellow, but hope to find out more soon. They said if he throws up through the night then they will have to put an ng tube down his nose again. My mind is just racing right now, not knowing what to expect. Not sure if he will have surgery tomorrow or what. I need to give him the rest of his meds now, so I will update as soon as I know more. Please pray!

Well, I am trying to think what all has happened here this week. All of the days are starting to run into each other. Caleb is doing okay. Late Sunday night he had a diaper that had some blood in it. His h and h had been dropping and we didn't know why, but after that we figured it out. Thankfully we doubled up on his antacid medication and he hasn't had a bleed since. When ever he is on steroids, he tends to bleed some, so we weren't to surprised. They have done some more tests and still have no idea what is causing his hardening of his abdomen. There are no apparent blockages, so they just want watch him for awhile. He ate really well yesterday and by the end of the night his belly was hard as a rock. I also could tell the he was very uncomfortable in the middle of the night. And then when the nurse came in to check his vitals he threw up everywhere. He is acting okay today, just not wanting to eat a whole lot. We are actually about to go down for him to have a cat scan of his abdomen. The doc's just want to compare it with the CT scan that was done in Texas. Jared had to go back to Texas yesterday, so today was a little hard for me. Just not having somebody to talk to and give me a brake if needed, is what is going to be hard. We did talk to the main transplant Dr. here and basically said that there are only about 100 kids transplanted a year and that they are learning new things all the time. He really didn't know what to tell us. All the tests and scopes appear to look fine. It's really strange. Tomorrow he goes for a liver biopsy at 4 o'clock. Anyways I better go for now so that I can get him ready for his test, but thank all of you who check in on us daily and please keep all of the prayers coming. THANK YOU!

Friday, February 10, 2006 3:49 PM CST

Hello,
I don't have much time to update cause the library is about to close. But I just wanted to let everyone know, if you haven't checked our quest book already, that we are in Pittsburgh. Caleb and I were set here on Tuesday night at 7:30. We arrived at 10:45. They have done lots of tests and many of them are inconclusive. They do know that he has some dilation of the small bowel and there are some narrow parts as well. Not to sure what they are going to do at this moment, but exploratory surgery is an option. That of course is their last option if necessary. He just got a pik line placed in is left arm so that they don't have to stick him anymore for labs. He is going to start on some tpn tonight and they just gave us the okay to feed him some clears. It is awful, because he just cries for food and says "drink" all day long. He is sleeping right now, but over all taking all of the pretty well. It is 5 now, so the library is closing, but I will update soon. Thank you for all of your prayers and please keep them coming. Thank you Grandma trying to keep everyone updated on Caleb’s guestbook page. And to my cousin Jackie, thank you so much for the plane ticket that you gave to Jared so that he could come up here to be with Caleb. Also, Caleb's aunt Janet is in the hospital right now having her baby, so congrats

Sunday, February 5, 2006 10:59 PM CST

Hello,
Just wanted to let everyone know that Caleb was admitted into the hospital on Tuesday with a very distended abdomen. After an x-ray and a 24hour stay in the er they decided that he just had a lot of air in his stomach and intestines. That is caused by a intestinal virus. They held his food for two days and so then we had to play catch up with all of his labs. His mag, potassium, iron, blood level and his prograf level were all messed up. His liver numbers are 60, and 80 which is the best they have been in a while. After fixing all that they decided to discharge us last night. Just in time to celebrate a little for Caleb's 3 year transplant anniversary. Thank you to everyone who came by to celebrate with Caleb and I. Today, Caleb is still feeling very yucky. He has a low grade temp and his belly is still bothering him. It isn't as distended as it was, but now he keeps grabbing at one spot and crying. So I am going to bring him back into the er. I am not buying the whole intestinal virus. There is something more going on. So I just wanted to let everyone know to please pray for him and that this will just pass and it is nothing major. We are suppose to go to Pitt at the end of this month, but we may be making the trip sooner then we expected. My lab top is not working right now, but I will try and update when I can. Take care and please keep the prayers coming.

Monday, January 23, 2006 1:48 PM CST

New Pic's!

Things are still pretty much the same around here. Since we stopped the medication that Caleb was on for the itching, his numbers have continued to drop to where they need to be. But now he has started itching again. It isn't as bad as it was before, but still very bothersome for him. I feel like it is torture, cause nobody seems to know why he is doing it. He scratches his whole body and now his hands and feet are getting red and itchy at night again, just like before. I don't know what to make of it. My sister and I took Caleb to the Children's museum yesterday to meet some friends and there kids. He really enjoyed it, so thank you Grandmaw for getting him a membership for Christmas. It was a little over whelming at first but then he started exploring the whole place. He didn't even care if we were behind him, I guess he was on a mission. He went shopping at the pretend grocery store, was on a play kid t.v. show, and the highlight of the day was when he got to go into the kid café and have a cherry slush, popcorn and his favorite thing skittles. What a healthy snack, right? Well he has labs tomorrow so hopefully they are still continuing to go down. Hope all of you are doing well and thank you again for checking in on us! Take Care!

Thursday, December 29, 2005 5:34 PM CST

Hello All,
Finally got the computer up and running now so I just wanted to post new pic's and give a short update on Caleb. We had a wonderful Christmas and Caleb got lots of fun things from Santa. His favorite thing is his new bike. He can actually ride it pretty good. He loves to go up and down everybody's drive way on our street. It's funny! He has just been keeping himself so busy with all of his new things. Health wise he is doing about the same as my last update. His numbers are still high and his prograf level is still low. So we went up on his antirejection med again and stopped one of his meds that can make his level low. The med was for the horrible itching that he was have a few weeks back, so I am praying that by stopping the medicine will not trigger the itching to come back. Next week I am going to call Pitt. and try to set up an appointment for us to go there and get checked out for Caleb's yearly apt. They will probably do a scope of his bowel and another liver biopsy. Not looking forward the cold weather up there, but it actually might be nice for a change since the weather here can't make up it's mind between cold and hot. Anyways hope you all had a great Christmas and an even better new year. I just pray the this year will be better for Caleb and he won't have to go the hospital so frequently. Take care and thanks for checking in!

Tuesday, December 13, 2005 5:01 PM CST

Hello

Hope everyone is enjoying the Christmas season so far! Unfortunately I haven't even started shopping. I tried last weekend and every place was packed, so I gave up. But hopefully this weekend I can get it all done. Well late last week our coordinator called us and said that after the doc's from Pitt and our doc's here reviewed the biopsy slides again, it did look like a little bit of rejection. So we started Caleb on a low dose of prednisone and so far so good. He had labs today and his liver numbers are coming down. His prograf level was still pretty low so we are going up on the dose and hopefully with doing that and the steroids on board his numbers will come down to where they need to be. I would love to see that, I can't even remember when Caleb's liver numbers were normal. He did have an abdominal MRI on Friday which was a lot of fun let me tell ya. First of all it was in the late afternoon on Friday and he had to be sedated for the procedure, meaning he had to have an IV and had to get poked again. Thankfully the nurse was good and got it in the first try. They wouldn't let us go home until he woke up after sedation, which I was a little worried about cause usually he likes to sleep all day and night after procedures, but I think he was ready cause he was awake when I went into recovery. I have not heard anything back yet on that. Even though the biopsy showed some rejection they still wanted us to have this done so they could check his bile ducks and see if any of them are clogged. I will update as soon as I hear something. Well I finally got my new computer, but my DSL is not working properly, so just bare with me for a little longer and I will post some new pic's. Take care and enjoy this season! Thanks for checking in.

Tuesday, December 13, 2005 5:01 PM CST

Friday, December 2, 2005 9:28 AM CST

Noooooo Rejection! Yeah!!!! We are actually on our way out the door; I just wanted to let everyone know that before the weekend. Of course, we are thrilled that there is no rejection, but again what is causing the elevated liver numbers. I think there is definitely going to be a trip to Pitt. after the holidays to figure some things out. Since nothing is happening here. Have a great weekend and thank all of you who have been praying so hard for us.

Just wanted to let everyone know that Caleb had a liver biopsy yesterday! We are in the hospital until we find out the results from the biopsy. Hopefully it will be early this afternoon. But it's pretty slow around here on Fridays. If it does show rejection then we will have to be here for a 7 day course of steroids. Not fun at all. Yesterday was pretty stressful. Caleb had to get stuck 6 times. Two in the lab for blood work and it took them 4 times to get an IV in. I was livid. They finally had to call in the anesthesiologist to come and she got it in the first try. They gave him a little more sedation then usual, so when he woke up he vomited a few times. He is feeling okay now and just finished scarfing down 3 french toast sticks and 3 waffle sticks. He was starving from yesterday. They are about to stop his IV fluids and then he will be a free boy. I brought his bike up here so I am sure we will be cursing the hospital for the rest of the day. Well that’s about it from here. I just want to ask all of you to please pray today that the results are not rejection. Thank you for always checking in on us and hope you all are doing well. Take Care!

P.S. New pic's coming soon!
*k*

Tuesday, November 22, 2005 12:20 AM CST

Wow I didn't realize that it has been over a month since I last updated. Sorry! Time has just been flying by; I can't believe that Thanksgiving is in two days. We are still dealing with our same issues, but have a lot to be thankful for this year. Although, Caleb still continues to have the elevated liver numbers, his itching has gotten much better over the last week. Last night was the first night that he actually didn't wake up itching like crazy. It was nice, let me tell ya! He has had a cold for the last week and last night he was running a low grade temp. so today I am taking him to see the doctor and hopefully get some medicine to get rid of this yucky bug. He also has developed a rash on his body that looks like he has the chill bumps all over his body, it's weird. I am going to show the doctor that today also. Caleb's speech therapy is going really well. He is repeating lots of things and has started saying more and doing the sign language for it when he wants something. He has an evaluation for OT in December that I think he is going to love. I am going to be getting a new computer soon, so I will be able to put new pictures up soon. Hopefully Caleb will cooperate for me when we go and get his pictures done next week. I have been trying to teach him to smile, but it's not going so well. I am also going to take him to get his hair cut at the mall today, so that should be fun! Ya right! He has labs on Monday and I think the doc's have decided to do another liver biopsy that same week also. We are long due for our yearly trip to Pittsburgh, so I think I am going try and set something up for after the holidays. Some of our transplant friends are going to be there in Feb. so maybe we can plan a reunion. That would be fun.
Well I hope you all have a really good Thanksgiving! Take care and thank you for checking in on us!

Monday, October 17, 2005 12:39 AM CDT

Hello Everyone,
So sorry the updates aren't coming as often as usual, but the computer I have right now is really slow and I get very frustrated with it. So until I am able to get another one things will continue to be slow. Also I can't add new pictures for awhile either, but hopefully soon. Caleb is doing great. Although he is still having this itchy rash. I have taken him to the doctor twice and they still don't know. We said if it wasn't better by today then he needed to get a skin biopsy, well last night was actually not bad at all. He usually wakes up 3 times a night itching and last night he didn't wake up at all. So I hope and pray that it is going away. We had a week off of labs, which was nice, but are getting them drawn tomorrow. I hope they look good. They were starting to trend down so hopefully we are still moving in that direction. We are getting excited for trick or treat time. I think I am going to take Caleb to our local zoo next weekend. They are having this big Halloween festival for kids. Not really sure what Caleb's costume is going to be yet. I am thinking either an Astro player or a cowboy. Caleb starts his speech therepy next Thursday! I had a little break this weekend and got to got the new casino in Louisiana. It was a lot of fun, even if I didn't win. It was sad seeing for my own eyes some of the damage hurricane Katrina left behind in the area. Well, I think that is all for now. Hope all of you have a fun and safe Halloween

Monday, September 26, 2005 10:50 PM CDT

Wow, what a crazy week! I am very sorry that I have not been able to update about the biopsy results from Monday. There have been a lot of things going on around here. Good news though, there were no signs of rejection. Just a little inflammation, meaning that Caleb could have a virus or something. Also last week he broke out in weird itchy rash and it still has not gone away. I have been giving him benadryl, but it is not helping. I have used cream after cream and nothing seems to help. The other night at about 5 am I had to put him in the bath thinking that it might help the itching. I think it helped some, but he was still miserable. I feel so sorry for him. Since it happens more at night, he doesn't get good sleep so during the day he looks like a zombie and acts as if he doesn't feel good. He is eating and drinking fine and no fever so I don't know what to make of it. Since the biopsy showed no rejection they discharged us on Tuesday night. We just stayed at my sisters, because we had to be back up at the hospital the next morning for Caleb Speech and dentist appt. Which both went well. The speech therapist wants Caleb to have intense therapy twice a week. So we will hopefully get that started soon. Well since many of you know hurricane Rita was headed our way, we decided to try and leave town on Thursday. Well the night before Caleb had an awful itching attack and the next morning he was acting very strange. Very lethargic and just acting like he didn't feel good. So back to the hospital we went. I was very scared this time, because it thought we were going to be stuck in the hospital when the hurricane hit. All of Caleb's labs looked okay so they just wanted to watch him over night and discharge us in the morning. They actually were leaving the decision up to us. If we felt comfortable leaving that night we could or just see how he was in the morning. So we decided to stay the night. Well the next morning he was fine. Didn't itch all night and had energy the next day. So we left there and headed to Caleb's Pawpaw and Nana's house about 2 hours away from us. Since everyone was trying the escape the storm, the freeways on Thursday were just packed and it was taking people 2 hours just to go a few miles. It was awful 100's of cars were just over heating and running out of gas on the freeway. In away we think that Caleb saved us from all that. Because if he wouldn't of been sick then we would have been in that traffic trying to get out town with all those other people. It was a miracle in disguise. It was really weird because Thursday the freeway was packed and on Friday, there was no body on the road. Strange feeling seeing all the stalled cars on the side of the road and the poor people just waiting from someone to come and help them. It was really sad! We got lucky and made it to Jared's dads in 2 hours, Thursday it would have taken us 24 hours to get there. Thankfully the hurricane turned its direction and we barely got any rain. We ended up coming home on Saturday to a house with no power, but it did come back on that night. Not a lot of damage around our house, just a lot of tree branches everywhere. Which I am very thankful for, because I really thought we were going to get hit hard. Anyways Caleb is still suffering from this itchy rash, so we are going to get labs on Wednesday. They are going to draw some extra blood to see if he is having an allergic reaction or something. Well I better go to bed, but hopefully all of you are doing well and thank you for the thinking of us! Take care!
~K~

Saturday, September 17, 2005 2:27 PM CDT

Hello,
Well Caleb is scheduled to have a liver biopsy on Monday AGAIN! His numbers are still way to high and they really don't know what else to do except for the biopsy. This is coming from Pittsburgh. They are the ones who want another one. Just very frustrating not knowing what is going on. So on Monday at 11:30 you know where we will be. I am not sure how long we have to stay; I guess it just depends on the results. Also on Friday, Caleb got this red itchy rash on his back and neck. It was the weirdest thing. I did call the doc and they said to give him benadryl. Which I did and it went away for a little while but then came back. I almost brought him into the er, because it was making him so miserable. He didn't get a good night sleep cause he was itching all night, but then this morning his was fine and has been fine ever since. Strange! Not sure what is could be. Now he has scratch marks all on his back and bottom it looks awful! Well just keep us in your prayers and hope all of you are doing well and enjoying the weekend. Take Care!
~K~

Tuesday, September 13, 2005 10:59 PM CDT

Hello All,
Just wanted to say hi and let you all that everything has been fine. There's not much to journal about except that we have labs on Thursday. Our coordinator did call earlier today and said that Caleb’s numbers are still elevated, so on Thursday if they are still high, then Pittsburgh wants Caleb to have another liver biopsy. Gosh it is soooooooooo frustrating. He just had a biopsy what about a month ago? It showed no signs of rejection or infection so why does he have to have one so soon if the numbers are still up? They haven't gone down from before, so what do they think it will show now. We did go to one a day prograf (antirejection drug). Which I am a little nervous about, but hopefully it will work out great. Because being this fair out of transplant he should be at one a day anyways. Caleb does have an appt. with the learning support center on Thursday also, which will be really interesting. They are doing a neurological exam and will be testing him for about 2 hours. That should be fun! Thankfully my mom is going to go with me to help out with wild man! Well off to bed, I will update soon. Take care!

Sunday, August 28, 2005 3:56 PM CDT

Good news! Caleb's ultrasound looked with in normal range, and his labs are looking a little better also. They are thinking he just has some type of virus, but I don't know what to think about that cause he is acting fine. We just want to thank everyone who has been praying for Caleb, God is defiantly listening to all of you. So keep the prayers coming PLEASE! Other than that good news, our weekend has been HOT and boring! Caleb doesn't have to get labs until Sept. 6th so I am very happy about that! Take care and I will update soon!

Wednesday, August 24, 2005 10:56 AM CDT

New Pic's!

Hello All,
Just wanted to fill you in on what's going on in our life this week. Tuesday Caleb had labs and yes his liver numbers are still pretty high. So our doc finally talked to Pitt. and they want Caleb to have an abdominal ultrasound the check for any vascular blockages. It just doesn't make sense to me. His numbers were fine and then all of a sudden after he got that stomach bug about a month and a half ago, they haven't been normal since. They also gave him IV iron and that made his numbers all out of wack. I don't think they know what to make of it either. It's not rejection so what is it? It's getting really hard on me to drive down there so often. As for Caleb it seems as if it is getting easier on him. He just walks into the lab, sits down and proceeds to put the rubber band around his arm so that they can draw his labs. It's really heartbreaking to see. Also Caleb's prograf level keeps staying on the high side, even when we dropped his dose. So they may change him to once a day instead of two, which would be nice, cause then I could give Calebs night time meds earlier. So the ultrasound is tomorrow at 8:00am and then we have labs after that, so as soon as I know something I will update the journal. I hope they find something that will give us an explanation, so that we can start treating the problem. It's getting really hard on all of us! Please say some extra prayers tonight for Caleb! Take care and God bless!

Monday, August 15, 2005 5:47 PM CDT

Just forgot to let you all know that we are home and Caleb is doing well. We did have labs today and yes the liver numbers are still high. They are thinking he is over medicated and that is the reason for the jump in numbers, so we are going down on some of his meds and see if it helps. They are going to talk to Pitt. to come up with a plan of action. Caleb's blood pressure is still high, even with going up on the dose of medicine. So I mentioned it and they are going to see what to do. Not real sure why it is so high, but I think it might have something to do with all the medications he is on. Anyways, we had a good weekend. Caleb went to his cousin Sara's birthday party and had a blast. It was at a place called pump it up and it was just a bunch of moonwalks, slides, mazes that were blown up. It was fun, Jared and I couldn't resist so we had to go buy socks next-door so that we could join the fun. I will be posting pictures soon. Hope all of you are doing well. We have labs Friday. Take care and thanks for checking in on us.

Wednesday, August 10, 2005 2:22 PM CDT

Good news! Noooo rejection! The doc's came in pretty late this afternoon and told us that his biopsy did not show rejection or traces of a viral infection. They think that it might be a drug toxicity. So they are going to do some more tests in the morning and then hopefully we can get out of here. He is still having some blood pressure issues. It is really high, so I think that we are going to go up on his dose of medication. Well off to bed, just wanted to let you all know the good news!

Hello everyone,
Just wanted to give you all a quick update on what has been going on. Well last Thursday Caleb had labs and of course his liver numbers were still elevated, so our doc's here talked to Pitt. doc's and they decided to have us come in yesterday for a liver biopsy. Soooooo that is what we have been up to. I am getting very frustrated on this whole liver issue. Not real sure if it is rejection yet, but think it is a good chance. Because Caleb has not been sick or anything, so I don't know what to make of it. We had to cancel his speech evaluation yesterday that we have been waiting for, for 2 months and now all they have available is not until the end of Oct. I was not happy, but of course Caleb's health comes first. His numbers today were still high and we will find out the biopsy results this afternoon. I will post when I know more. Please keep Caleb in your prayers that this will not be rejection and we will be home soon. Also don't for get to stop by our transplant friends Destiny's website and wish her a happy 3rd birthday. Take care and God bless you all.

Monday, August 1, 2005 9:55 AM CDT

New Pic's!

Good Morning!
We just got back from getting labs, so I will update later with those. Last Tuesday Caleb's liver numbers had come down some, so we were happy about that. His prograf level on the other hand was way too high again. So we went down on the dose and they wanted us to go back on Friday. Well getting labs twice a week is just way to hard on Caleb. He has gotten better about going and doesn't cry as much when we pull up at the hospital, but it's just to much!!! So I asked if we could go today and they said that was fine. Oh, I never told all of you about the circus last Wednesday. Caleb did okay, he wasn't on his best behavior and feel asleep in the middle of the show. I tried to give him a nap earlier that day, but he just wasn't having it. I guess he wasn't ready this year. Me and my mom enjoyed it though. It was a lot smaller then what I remember as a kid, but they put on a good show. Friday I am taking him to the see the wiggles with his twin friends Cody and Cameron, so hopefully he will have fun. On Thursday I took him to the Children's museum and he loved it. We went with my mom's school, so Caleb just had a blast. I was pretty nervous about the germs, so it seemed like every few minutes I was wiping his hands. I thought I was doing good until I saw him but a plastic fork in his mouth. I almost had a heart attack. He hasn't been acting any different so I am very thankful about that. On Friday I took him swimming with his Aunts and cousins. They had a nice splash area for the kids and Caleb just loved it. When we got ready to leave, Caleb threw a fit and his Aunt Carrie and I had to carry him out. It was sad, but hopefully we will go back soon. That's about it from here, just trying to keep this boy busy. We have his speech evaluation on the 9th, so hopefully that will go well. Hope you all are having a good summer, take care and I will update soon. Thanks for checking in on us.

Monday, July 25, 2005 2:54 PM CDT

Sorry I didn't update on Thursday, but our coordinator didn't call me with the lab results until Friday afternoon. The liver levels are still elevated and now his prograf(antirejection med) level is way too low at 4. I think what happened was when he had that stomach bug, he wasn't able to absorb his meds, so that made his level go sky high. And now that the bug is gone, he is absorbing fine and that's why his level dropped. He was suppose to have labs this morning, but I had to take Jared to the Doctor. We are going tomorrow though and I pray that everything is back to normal. It seems like when ever he gets any kind of bug or has a bleeding episode, his levels go all out of wack. I am very tired today, I guess cause we did alot running around this weekend. I will update with tomorrows labs. Yeah, we go to the circus Wednesday night and I hope Caleb enjoys it. Well hope all of you are enjoying your summer. Stay cool and take care!

Tuesday, July 19, 2005 6:42 PM CDT

Just wanted to update and let you all know that Caleb had labs today! His liver numbers are up a little and his prograf level is 20, which is too high. They what him around 10. So we have to go back on Thursday to repeat labs. I am not at all surprised that his labs are like this, cause over the weekend he came down with a stomach bug. Thought we were going to have to take him to the hospital, but Sunday he was okay. And now Jared and my mother have the same symtoms, so that's why i didn't get to concerned. I was scared he was going to get dehydrated, so I just forced him to drink, drink, drink. He didn't eat that great while he was sick, so that could be why his prograf(antirejection drug) level is high. Other than that, things have been okay! We are suppose to go see the circus next week and then on the 5th we go to the wiggles concert again. Hope he likes it this year! Well I will update again on Thursday with his lab results! Take care and God Bless!

Thursday, July 7, 2005 11:57 AM CDT

New Pictures!

Hi everyone,
Hope all of you had a great holiday! Caleb loved the fireworks! I thought that he would actually be scared and plug his ears the whole time, but he was so excited and just tossing and jumping around. We bumped into Jared's sister and her family, so I think Caleb was excited to be with his cousin's. We had a long wait, but the show was definately worth it. Too bad I forgot my camera, I wish I could have captured the look on his face when the fire works went off. Other than that, things have been going great. Just trying to say cool in this awful heat. I think the high the other day was close to 110 degrees. Caleb doesn't really like to be outside when it's like this so we just stay in and try to keep ourselves busy. We have gone to the big pool a few times and Caleb just loves it. We did have clinic yesterday and it went good. I haven't heard back on his labs, so I assume that the were good. Last weeks liver numbers were in the 30's so that is great. Dr. Karpen thinks Caleb looks wonderful and is over all doing great. He also said that he couldn't make Caleb look better even if he tried. Caleb kept grabbing his hand and wanting him to do something. I think he wanted him to sit on the floor and play with him. It was so funny. Even when we were leaving he turned around and went to find Dr. Karpen and wanted him to go with us, I guess. Oh and earlier Caleb was playing in the waiting area and I was waiting for him to come down the slide and when he didn't come, I peeked around the corner and Caleb was putting some kids pacifier in his mouth. I could have died. So if Caleb gets sick we will know why. Today he is acting fine and I finally took Caleb to get his hair cut. He also rode the carousal and loved it. Well that's it for now, so I will update soon. Take care and hope you all are doing good. Bye for now!

Thursday, June 16, 2005 10:41 AM CDT

New pic's!
Hi,
Not much has been going on this week! Caleb did have labs on Monday and his liver numbers were still elevated so they started him back on a low dose of steroids. Hopefully the numbers will come down, but if they don't then Pitt. wants a liver biopsy done to figure out if it is still rejection or what. Caleb did have labs today to see if the numbers have gone down, so we are waiting to hear what those are. I was so mad on Monday when he got labs because the lady who drew them had to be new, cause she poked Caleb 2 times in the same spot and still could not get it. She obviously did not know what she was doing, cause they always get it in the first try. She had to call someone else to do it. So he had to get poked 3 times Monday, I was so mad and so was he. Today I requested our favorite guy to do it and of course he got it in the first try. I will be asking for him every time. Other than that drama, it's been pretty boring around here, but that's the way we like it.

Also I do want to ask all of you to please pray for our friend Georgia in Pittsburgh for she just lost her beautiful son Louie. He was an amazing little fighter and touched everyone with his addicting smile. We will miss you Louie and hope you are dancing in heaven! His funeral is today so please say some extra prayers! Please visit his web page at www.caringbridge.org/pa/louis

Thank you all and God Bless!

Sunday, June 12, 2005 4:12 PM CDT

Just wanted to say that Caleb is home and doing well. We got out on Friday afternoon. Yesterday he was acting a little punky, but today he is fine. His liver numbers went down by half, so the doc's just think that he had an allergic reaction from the IV iron. Caleb has labs tomorrow. Well Jared is back in town so we are going out to eat now. Just wanted to let you all know what was going on. I'll update more later!

Thursday, June 9, 2005 11:59 AM CDT

Just wanted to give a short update on Caleb's condition! Our doctors ended up admitting us on Tuesday and got another set of labs to see what Caleb's H and H was. Well the plan was to just give him 3 doses of IV iron over 3 days and send us home on Friday. We did stop the 2 blood thinners and steroids, because like I said before we are sure that combination is not good for Caleb. They didn't not want to transfuse him, but when they got the labs back his hemoglobin was 5.9 which is way to low. So they went ahead and gave him blood. Wednesday morning they drew more labs and they all looked really good. His hemoglobin was up to 11.1 and his liver numbers looked good also. Thinking they would have just sent us home after that, Dr. Karpen still wanted Caleb to get the Iron. Which he did yesterday after noon and they told me just to watch him for any side affects. Well last night his wasn't acting right. Just not wanting to eat or drink and acting tired. So then, through the night he kept waking up and itching his body and this morning he now has a red rash all over and he is just acting like he doesn't feel good. We did give him benadryl, but it didn't seem to help the itching. I am very upset, because it seems like every time we come to the hospital Caleb gets sicker. He was fine yesterday and now this. This happened last time we were here too. When are they going to learn to just give him a transfusion and send us home, we know when it is necessary to bring him back. Well he is starting to cry, so I will update later. Please pray that this is nothing viral and we will get to go home tomorrow. Also I think many of you know our friend Olivia? Well we found out that she got her second transplant on Friday. We are so happy for her! So please keep her in your prayers as well. Take care and God Bless you all!

Tuesday, June 7, 2005 11:57 AM CDT

All the fun must come to a end! Caleb got labs yesterday and his H and H was still low, but staying stable. His liver numbers took a little jump and his iron was low. They just wanted to have me watch him for any blood in his stool and get labs on the 20th. Well this morning he had a dark maroon color stool and I am off to take him to the hospital. All this doesn't surprise me because he is on 2 blood thinners and steroids. All this can make him bleed. He was doing so good with the low dose of steroids, they should have been more careful about putting him on 2 blood thinners to help his high platelet count. Well we are off, so please keep us in your prayers. Hopefully this trip will be a fast one, cause Jared is out of town and it is going to be hard being there all day by myself. Take care!

Wednesday, June 1, 2005 9:47 AM CDT

New Pictures!!!!
Hello,
We hope you all had a great Memorial Day! We didn't really do much. We wanted to take Caleb swimming in a big pool for the first time, but the weather wasn't all that great. Everything else is going pretty good. Caleb did get labs drawn yesterday and his liver numbers look beautiful, but his platelet count is way up. The number is in the millions and normal is like 400,000. Which means that his blood could clot very easy. So they are starting him back on baby Aspin and another med that I am actually waiting on to be delivered at our house any minute. They want to monitor him more closely, so we have to get labs again tomorrow. Which I am nervous about, because poor Caleb just hates going there. Yesterday when they called his name and we started walking into the lab, he grabbed the door and would not let go. I had to literally pry his hands off of it. It was really sad! No child should have to go through this kind of stuff. They should be out playing at the park and having fun with friends. Not going to the hospital for labs all the time. Please pray that this new medicine helps and his platelet count starts to go down. Take care and I will update when I know more.

Friday, May 20, 2005 10:11 AM CDT

New pictures!

Hello,
Caleb is great! He had labs on Monday and they looked good so we went down on his steriod dose and dropped one of him meds. We don't have to get labs till the 31st. Which is great, because poor Caleb starts whining now when we pull up into the parking lot. He knows what he is there for and it's really sad. There is a gift shop right next door to the blood lab and pretty soon I am going to have to start taking him in there for being such a big boy. Other than that, he has been enjoying playing with all of his new toys and looks just so handsome in all his clothes from his birthday. Thank you everyone who helped make his day special! Thank you grandpaw for buying him a new swimming pool. I let him play in it yesterday and he just had a blast. I will post those pictures soon! The Wiggles are comeing here again and we are going to try and buy tickets with some friends of ours. Maybe this year Caleb will watch them on the stage instead of the big screens they had up last year. Well hope you all are doing great! Take care and thanks for always checking in on us! Love to you all!

Tuesday, May 10, 2005 4:41 PM CDT

New Pictures!!!

I finally got around to putting new pictures on Calebs site! Hope you all like them. He is turning into such a big boy and I still can't believe his is 3 years old. Things are continueing to go well with him and we hope it stays that way. We get to skip a week without labs, which is just fine for me and I am sure Caleb likes it too. Monday we will get our next set and I pray that those look great, so we can go down on his steriod dose. That's pretty much it for now. Take care and thanks for checking in!

Wednesday, May 4, 2005 0:22 AM CDT

HAPPY 3rd BIRTHDAY CALEB!

WOW, I can't believe 3 years have already gone by since Caleb came into this world. You would never know by looking at him now, just how sick he was when he was born. Fortunately God has helped us down the path that has given us 3 special years with Caleb. Yes, we have had our ups and downs, but seeing him grow up right before our eyes is a miracle in itself. Thank you to Caleb's donor family for making the decision to help others in need. Without their unselfish act, Caleb may not be here today. I hope they have some peace in their hearts. Also we want to say a big THANK YOU to the ones who have been there for us since the beginning when our journey began. I don't know what we would do without your love and support. Well I gotta go wrap some presents, but just know that you all mean the world to us. Thank you for your kindness and have a great week!

Thursday, April 28, 2005 12:39 AM CDT

Hello
Things have been continuing to go well with us! Caleb's last day of Speech Therapy through ECI was today. It was kinda sad, cause we have been with them almost 2 years now. But I think Caleb got a lot out of it, especially when our speech therapist would bring over her big bag of goodies. Today she brought him some spider man cupcakes and a cap and gown for graduating. We took some pictures so I will try to post them soon. Jared bought a new computer, so we do not have the program for my camera installed yet. We have been trying to plan Caleb's birthday party, but are not getting very far. I think we are going to have it at a park that Caleb enjoys to go to, but things are still up in the air. I am very thankful that, that is the only thing I have to worry about right now. Also Caleb's great grandad had to go back in hospital, please pray that he continues to get better and that he is home soon. Well, we hope you all enjoy your weekend! Thanks for checking in on us!

Wednesday, April 20, 2005 11:29 PM CDT

WE ARE HOME!!!!!!!!!!

Just wanted to let everyone know that we finally made it home Tuesday night! They were going to let us out today, but at the last minute they said that we really didn't need to be there and that we could leave. I was so happy and thankful that my mom had taken off yesterday to come visit Caleb, because she was able to help me pack up and get out of there. We do have labs on Friday, and Caleb is now on 3 other medications. Including steroids, which makes me a little nervous, but so far he is doing great and just praying every night that it stays that way. All his labs looked great before we left, so they pulled the pic line out. Very happy about that, cause I was worried that he wouldn't get to go swimming this summer for the first time. He does have to get stuck on Friday, but they are usually pretty quick. Well I am going to bed, I am exhausted. Thank you to all our prayer worriers, you are all the best.

Saturday, April 16, 2005 10:09 PM CDT

Well Caleb's liver just wasn't ready to corroperate without steroids. We tried stopping them on Wednesday and his liver numbers shot up to the 400's. So I am sure you can guess what the doctors wanted to do. Restart the yucky steroids, but this time at a low dose and wean him down each day depending on his numbers. So far the plan has been working. His numbers are almost perfect now, but his blood pressure is still really high. I don't think they really know what to do either. He is on 2 different kinds of medicine and either of them seem to help. We are all just hoping that it's just the steroids that are causing this. Also to add to this fun journey we are having, Caleb now has a line infection in one of his pic ports. It just makes me mad; cause for 2 years Caleb had a central line that never got infected and now only having the pic for a week it gets infected. So he is now on 7 days of IV antibiotics, which will be till Wednesday. The good news is that they have been drawing cultures each day to make sure it is not still growing and so far they have all be negative, so it looks like we caught it early. I am just praying that his numbers come down and stay down in order for us to get out of here next week. Don't these people know I have a birthday party to plan? Gosh, I can't believe Caleb is almost three. Well that is it for now! We hope you all have a great rest of the weekend. Thanks for checking in us.

Tuesday, April 12, 2005 6:06 PM CDT

Hey everyone,
Just want to type a quick update on our strong little boy!
He is do great today! He has one small dose of the steriods tomorrow and then his is done. Yesterday he was still acting like he felt bad, but today he woke up a new boy or shall I say back to his old self. It was so great to see him sit up in bed and eat his waffles. He has even been playing in his bed all day and watching movies. This is such a relief for me because for almost a week now, all he has wanted to do is sit in my lap and sleep. His levels have been staple, so we have orders to go up to our own room today, but they say there is nothing avaliable so it might be tomorrow. His pressure is still very high, but it shall start improving now that he is going to be off steriods. We are hopeing to be out of here by this weekend. Nemo on ice is here and we really want to take him. The last day is Sunday so we shall see. Although I think they are all sold out, but if anyone knows where or how we could get tickets please let us know. I think Caleb would love it. That's it for now! Thank you for all the continued prayers, as we all know it is the best medicine! Our thanks to all!

Also our transplant buddy Logan just celebrated his 2 year trasplant anniversary! You go Logan! Please keep him and his donor family in your prayers as well.

FAMILY UPDATE: Grandpaw Glaude is recovering nicely after his surgery and is now home!
Grandad is still in the hospital, but is getting stonger each day
Pawpaw Ronny got good test results from his test last week

Friday, April 8, 2005 10:36 AM CDT

Well where do I begin,
I think the best way will be just to give you all a time line!

Monday--- Liver biopsy, admitted until we get results back

Tuesday--- found out the the biopsy did show moderate rejection, started him on something called a pulse, which is a cycle of steriods for 7 days! And just prayed prayed prayed that he wouldn't bleed from the steriods, which he had in the past.

Wednesday--- enjoyed playing in the play room and loved running around the floor and pointing at every color and number for me to say it. He would always go by the play room and wait for it to be open. Eating well also! About 8:30 he had a dark black stool, which we knew was old . The resident on call was rude and treated Jared and I like we were stupid and didn't know anything! Well he quickly found out that he was messing with the wrong parents. They also made him NPO, which means no food.

Thursday--- The liver team thought that it was better to transfer us to the ICU just so they could keep a better eye on him. Well he was himself until last night. He had been stuck so much for labs that he is terrified when anyone walks in the door. It's really sad and I was sick of it, so we wanted them to put a line in to ease his pain. They were going to scope him to find the source of the bleeding, even though it seemed to of stopped. We had to argue with them for ever about waiting to see if it would stop, until they jump in and scope, which could cause more damage. They finally listened and decided to wait on the scope. He did not have any diapers today! Thankyou God!

Friday--- Just had a pik line placed and is still in a deep sleep, so I wanted to update you all! The line is in the upper part of his right arm. As much as I him having lines in him, this makes me feel some relief knowing that he does not have to be poked anymore. Texas Children's has disappointed me once again.They are cycling his steroids down quicker now. I have the doctors in Pitt. saying one thing and these doctors here doing another. I think they don't like being told what to do, but they need to understand that his doc's in pitt are his main doc's and they always will be.

That's all the drama so far, but I will try to update again soon! Thanks for the continued prayers and checking in on us daily! We love you all!!

Thursday, March 31, 2005 3:30 PM CST

God must have been listening!
The doctors office just called and cancelled the biopsy till Monday! That makes me feel so much better.

Hi everyone,
Just wanted to let you all know what has been going on this week. Well on Monday we had labs and they weren’t so good. His liver numbers jumped up again. Which I think it was just from his stomach bug he had the week prior. Well we had to have labs again yesterday and they said that if they were still elevated then he would have to have a liver biopsy Thursday or Friday. Well they were actually much better, back to were they usually are, but the doctor still wanted to do a biopsy because his numbers haven't been normal in so long. Well it really makes me mad, because now we have to go Friday at noon and stay for 23 hours, which really that never happens, we usually stay for longer.I mean we just got out of the the hospital and Caleb has started to know what that place is all about. When we go for his labs he starts whineing when we get off the elevator. It's sad. Anyways, I tried to get them to just wait till next week, but they said that Pitt. wanted them to do it as soon as possible. Dr. Karpen said that he would make sure that we get out Saturday afternoon, but I don't believe it. I don't know what is going on with Caleb's liver, but it is starting to get really frustrating. Every week I worry about what the labs are going to be and I hate feeling like that 2 years out to transplant. Being this far out we should be going once a month for labs. I guess I can't really complain, because he his at home and doing well otherwise. He has started saying words like moon and stars. Well that is it for now, I will update after this weekend. Have a good one and take care!

Friday, March 25, 2005 2:07 PM CST

Just wanted to let everyone know that we did end up going to the hospital Sunday morning. Caleb had a low-grade temp and was just not acting himself. We thought that it would pass, but he just couldn't shake it. Anyways, the doctors put him on two antibiotics and did all kinds of blood, urine and stool cultures, but thankfully everything was negative. It seems as if he just caught the stomach bug that is going around here. After he got some fluids he perked up some. All his labs look good and he is feeling great now. He was very happy to be home and was so excited to be out of the hospital. After they unhooked him from his IV he ran out the door and feel down on his face. He was fine, but it just shows you how happy he was. We have labs on Monday and hopefully those will be great. I had a chance to meet a mom on Tuesday who's little girl needs a small bowel and liver transplant. Our doctors are sending her to Pitt. this week for an evaluation. The social worker at the hospital had asked me if it was okay that I tell her a little bit about the whole process and what we all went through. It felt good being able to help somebody in her situation, cause we all know I know exactly how she feels. I just hope I was able to help her out some. Please keep this little girl in your prayers that she is put on the list and gets her second chance at life soon. I am also happy to know that Texas Children's is now referring children to Pittsburgh, because when they decided that Caleb needed a transplant they just told us that they didn't really know much about any of the three centers and it was just up to us. It seems as if Caleb is now a role model for others. I am very thankful to have been asked twice now to talk with families that need answers about transplantation and to tell them our story. Well that's about it for now. Caleb and I are off to go shopping for him an Easter outfit. Also I just got an email that Caleb's great Granddad is in the hospital with severe stomach pains. Please keep him in your prayers that everything will be fine and he will be out of there quickly. Hope you all have a wonderful weekend and fun filled Easter. Thanks for checking in on us.

Friday, March 18, 2005 11:29 PM CST

Hi,
Just wanted to say hello and let everyone know that Caleb hasn't been feeling very well this week. On Wednesday, he started looking a little dehydrated so I pumped him up with lots of fluids. He looked better Thursday, but started acting like he just didn't feel good. Today was the same, just real clingy and not a lot of energy. Not really sure what is going on, but we might be visiting the yucky hospital this weekend if he doesn't start to feel better. We just wanted to get an update out, incase that happens and we are not able to. We were around a lot of friends and family this weekend, so maybe he just picked up a nasty bug. But please keep him in your prayers and hope that things start to turn around for him and he starts to feel like the happy, funny Caleb that he is everyday. That's about it for now! Hope all of you have a great weekend! Thanks for checking in on us!

Tuesday, March 8, 2005 11:02 PM CST

Finally we have access to the Internet! I have been going crazy not being able to check email, update Caleb's journal, check his guest book to see all the kind words, and check in on all our transplant friends. Thank you everyone who has continued to sign Caleb's guest book throughout our journey. It means allot to know that you all still check in on us daily. That is why I have felt bad not being able to update often, but now we can!! Things are still continuing to go great here. Caleb is feeling great and has even started saying some of his letters in the alphabet. He can say the sounds of B M P Q V and W. He is absolutely obsessed with the alphabet right now. When we go anywhere and he sees letters he has to point them out and look at me to tell him what they are. Whether it is a license plate, store signs or if you have on a shirt with letters he has to touch each one until you tell him what it is. It's getting a little out of control, but very cute I must say. He knows all of his letters, cause we have been trying to trick him when he points to a letter, we say it's a different one and he knows cause he will not take his hand off of the letter until you say the right one. He does this with shapes also. I love that he is doing this, cause it is showing us that he is learning and hopefully he will be talking soon. He can say bye, bye while he waives his hand and he can say ME when he sees himself in the mirror. He has started singing the alphabet, but he just uses one sound and it is bbbbbbbbbbbbb, it's to cute. On the medical side of Caleb's life, he is doing great, he doesn't have to have labs until March 23. Our new house is finally starting to feel like a home. We still have some boxes, but it will take time to get everything settled. Poor Jared has had a tooth that has been bothering him for a long time now and he finally had to go to the dentist cause he was in allot of pain. Well when he got there on Monday they told him that he had a major infection and that the tooth had to be taken out immediately. He is not a dentist person, so he was pretty nervous. His poor face in all swollen on one side and had to go back today for another procedure. He is going to try and go back to work tomorrow, so please keep him in your prayers that he starts to feel better soon. Also please continue to pray for Caleb's Grandpaw Claude. He was suppose to have surgery to remove a tumor today, but due to him having a fever this weekend I think it was postponed to next week. He needs lots of prayers right now! That's about it for now, just living life one day a time and enjoying every moment of it with Caleb! Take care and God bless you all!!!!!!!!!!!!

Monday, February 28, 2005 4:21 PM CST

Hello everyone, we are very sorry for the delay in updates but we have been really busy moving into our new house. Our DSL service will not be hookup until the 3rd, so I am at a friends house. Caleb has been doing great, although he did have a little set back with elevated liver numbers last Monday. We did have them repeated on Friday and they are back down. Still not in the normal range, but we are happy with them. The doctors are happy with his progress so we do not have to have labs until March 23. Caleb had his yearly scope on the 10th and everything looks fine. I will try to post new pictures soon. And we are very sorry for the delay in updating. Hope all is well with all of you. Take Care.

Friday, February 4, 2005 5:17 PM CST

New Pictures! We are very sorry that the pic's are very, very large, but I thought I put my camera on the right setting, but I guess not. I was going to try and fix them tonight, but didn't have time. Enjoy!

Wow, were do I begin! Two years ago on this very day, Caleb received his second chance at life. It is a day that we are so thankful to have had and a day that will always be imbedded in our hearts and minds. We had no idea what the road was going to hold ahead of us, when Caleb got his second chance, but we were willing to move forward and find out what this new world was going to be about. So here we are two years later and happy to say that Caleb has been doing great. Yes, he did have some set backs during the first year, but it was nothing that our little man could not conquer. This year we have been blessed with overcoming two obstacles that Caleb has had since he was born, and that was the removal of his central line and his feeding tube miraculously falling out in the middle of the night. He has been doing awesome without either of them and we are ecstatic to finally look at our son without any lines or tubes on his body. Tonight we are going to celebrate this special day over at Grandmaw Donna's house! I know I write this allot, but I just want to say THANK YOU to all of you again for your generous prayers and everything that you do. Please keep Caleb's donor and his family in your prayers also, for I am sure that they are going though a hard time right now. We are so very blessed for they unselfish gift of life.

Tuesday, February 1, 2005 12:22 AM CST

Hi,
I am sure many of you noticed that the pictures I put on the site are way to big. I had the wrong setting on my camera, but I will fix them soon. Anyways, I just wanted to let everyone know that Caleb has been doing great. We were happy about his labs on Friday, cause his liver numbers are coming down slowly but surely. He still has a little cough but overall feels great. Caleb's yearly ultrasound and chest x-ray looked good also. We have a scope scheduled for Feb. 10th and he will have labs that day as well. That's about it from our end. Hope all of you are doing great and thank you for checking in on us.

Please say many prayers for our transplant friend Destiny, she had a kidney transplant last week and is having some problems. Thank You!

Thursday, January 27, 2005 4:41 PM CST

Hi,
Just wanted to update that Caleb has been doing okay. The day he got his central line out, he developed a cold, which he hasn't been able to shake. I actually had to take him to his new pediatricians office yesterday to get some medicine that would help him get over this horrible cough. Tomorrow we have labs, a yearly abdominal ultrasound, and a chest x-ray scheduled. I hope he coroperates with them and me tomorrow. Also, since he has been sick, his appetite hasn't been all that great, so it is a struggle everyday to get him to eat and drink. But hopefully when this virus passes, he will do okay. Cause we don't want any more lines or tubes on this boy. It is so weird to think that I don't have to flush his line, do dressing changes, worry about his line getting wet in the bath, or hook him up to his milk at night. It is a really treat to see my boy have some normalcy in his life. He loves taking a bath now that he can splash around. He actually cries every time I try to take him out. The pediatrician thought he looked really good, for what all he has been through. She expected him to be very tiny and thin. But he is actually right on target for his age group. Well that is about it for now, I will update later with his lab results. And Grandmaw I will post new pictures soon, I promise!

Saturday, January 22, 2005 11:27 AM CST

YEAH!!!!

Just wanted to let everyone know that Caleb's labs yesterday looked much better! His liver numbers have come back down the 100's and we are very happy about that. I just want to take a moment to say thank you, thank you, thank you, and I think one more will do, so THANK YOU to everyone who prayed hard for Caleb over last few days. God have truly heard all of us. I know I say this allot, but you are all so special to us and thank you for joining us on this journey with Caleb. He still has a cough and a little runny nose, but other than that he is feeling just fine. Looking forward to celebrating his 2-year transplant anniversary in a couple of weeks. Can't wait! Well hope you all have a great weekend; I know we will!

Wednesday, January 19, 2005 11:45 PM CST

Hi everyone,
This may be a long entry so be prepared to be here for a while. Yesterday morning we ventured off to the hospital to get Caleb central line out of his chest, which he has had his whole life. Well we arrived at 8:30 for labs in clinic and I told the nurse to have our coordinator call me with the results of the liver numbers. Because I just had a feeling that they were going to be high. Well after saying that she would have her call us we proceeded to go check in for the surgery at 9:00. Poor Caleb could not eat anything until after the surgery, which was scheduled at 11:00am. Well my phone had died and Jamie didn't have Jared's cell so I never heard from her. Well at 10:00 they finally brought us back to talk to the nurse practitioner and I then asked her to check the computer to see if Caleb labs had come back yet, which they hadn't, so she said that she would keep checking and would print us out a copy and bring it to us in the waiting room. Well we never saw here again. So we figured that they were okay and since I hadn't heard and seen Jamie then we thought the numbers were okay. Well when the anesthesiologist came to take Caleb out of my arms without even giving him some separation medicine, which was very sad, I asked her again about his labs and she said that they would check and print us out a copy and give it to us in the recovery room. Well at that point again we figured everything looked good and it was a go for the surgery. Jared and I were mad, because the surgery was suppose to be at 11:00, and they didn't take him back till 12:45 and since Jared had an interview with Kimball Hill Homes, he had to leave right when they took him back. I went and ate lunch and we I got back Dr. Wesson was already waiting on me. That was the quickest surgery Caleb has ever had. The Dr. said everything went great and that Caleb had two stitches, one in his neck and the other on his chest. When I got back to see him he was still very much out of it. I then asked the recovery nurse if I could see his labs and she said sure and went and printed them out for me. Well let me just tell you when I saw his liver numbers I almost fainted. They are very high and haven't been like this in awhile. Normal is 20-60 and his are 297 and 435. Some of his other labs were elevated also, so I immediately had Jamie paged. Well, when I talked to her she said, yes that she saw Caleb labs and that they were horrible. And asked me if I wanted to keep his line in cause we were just going to have to get labs on Friday. I said in a very mad voice. "JAMIE THE LINE IS ALREADY OUT"! She said, "don't panic it was time for line to come out anyway and hopefully he just has a virus or something." Well it is so easy for her to say, she doesn't have to see her child get stuck with needles constantly. I was very angry with my self for not going on my gut feeling and demanding to see the numbers before they took him from us. Well after that we stayed for about 45 min. and went home. Caleb was pretty much out of it all night. I think they gave him way to much sedation, and it was starting to worry Jared and I how he was acting. He actually threw up twice, which is very unlike him. All the surgeries that he has been through, he had never acted like this. All he wanted to do was drink sprite and sleep. Finally at about 9:00pm, he perked up a bit and I was able to get some of his meds down. He did well over night, but we he woke up I noticed that the stitch on his neck had come loose and he had blood on his shirt and the pillow. I cleaned the sight and put a new piece of gauze and taped it down. He seems to be acting fine today, thank God and managed to eat his waffles this morning. He is watching blues clues right now and is about to take a nap. I just wanted to let everyone know about our wonderful experience yesterday and to just ask all of you to pray that his levels go down. We have to get labs on Friday, so please pray hard for him over the next couple of days. I know we can not thank all of you personally for all that you do, but just know that you mean the world to us! THANK YOU!

Wednesday, January 12, 2005 3:40 PM CST

Hi All,
Welcome Home Grandpaw! Well he finally made it home on Monday! He is doing great and when we went to their house to welcome him home, he was in good spirits. Grandmaw seemed a little overwhelmed at all the new meds and making sure that Grandpaw does everything he needs to do. But Jared and I quickly explained that, that's how it is at first and once you do it for a couple of days and get a schedule down, you turn into a pro. She will do great!

Caleb had labs drawn yesterday and they all look about the same as last week. Still elevated, but thankful that the liver numbers didn't go up any more. His anti rejection med level was a little high, so we went down on the dose. He has been doing great with taking his meds by mouth. Today was the first day that he didn't scream! So hopefully he is getting use to the fact that he has to do this. I did talk to Pitt. and they are allowing us to go down on some meds, to make it easier on Caleb. Also, our doctor here doesn't think Caleb still needs his central line anymore. He feels that it is to much of a risk for infection. They did talk to Pitt and they felt the same way, so our coordinator is scheduling a day to take it OUT and will call me back later this week. Can't wait for that, but we just pray that Caleb will do just fine and will not have to get stuck to often for labs. Well that's about it for now! Hope you all have a great week and thanks for checking in on us!

Please continue to pray for ALL of our transplant friends!

Saturday January 8, 2004 @6:45p.m.

Caleb and I just got back from our friend Branson's second birthday party! Caleb had fun and even ate some ice cream. He was very tired though and fell asleep in my arms while we were watching Branson open his gifts. I wanted to tell you all what happened this morning with Caleb's feeding tube. To make a long story short, it fell out through the night. When I got up this morning I noticed that it wasn't in his stomach anymore. After calmly freaking out, I opened up a new kit and preceded to put another one back in, but it just would not go in. After trying a few times and Caleb crying in pain, I decided that it wasn't going back in. He got his 11:00 meds last night, so it had to have happened sometime after that. The hole just closed up fast. Jared and I have wanted that thing out for a long time, but it is good for all his meds and serves as a back up if Caleb does not eat well, then I can give him some milk through the night. I did call the coordinator in Pittsburgh this morning and she said that is was up to me. I could either leave it out and see how he does or take him to the hospital and get a smaller one placed. I chose to leave it out and see what happens. Caleb has never had to take his meds by mouth until today. And believe me it was a struggle getting them down. Something that used to take 5 seconds to give, now takes at least an hour. I had to dilute the meds and put them in his sippy cup. I know it is going to be hard for a while, but hopefully it will get better. Caleb has had a g-tube since he was born so it is really weird not to see him with one. Please pray that things will go great, and that he will be able to get all his nutrients by mouth. Also Caleb's liver levels are up again, so we are going up on his med Thank you and God bless you all!

On another note, Grandpaw Claude was supposed to come home today, but had a little set back. His is retaining fluid and the doc's do not know why. I will post more as soon as I hear it!

Please continue to keep Makenzie, Destiny,Olivia, Logan, and all of our transplant friends in your prayers!

Thursday, December 23, 2004 10:14 AM CST

Hello all,
Just wanted to give a quick update and let you all know that Caleb is still doing good. We did have labs yesterday and his liver numbers went up just a little bit. Caleb does have a cold, so hopefully that could be the reason for the jump. On Monday the transplant center at Texas Children's held a dinner for all the children who have had transplants. It was fun. Caleb's Gran and Grandmaw got to go with me, but poor dad had to work out of town and could not make it. Caleb had a good time and even got a special visit from Santa. The kids all got to sit on Santa’s lap and got some really nice gifts. Thank you TCH for you kindness! Also last weekend we spent an early Christmas at Caleb's Nana a Papaw’s farm! Thank you you two for a good time and great gifts! Other than that we have just be doing lots of Christmas shopping and Caleb has actually done really well going with me to all the 100 stores I drag him too. Yesterday we got his hair cut at this cute hair cut place for kids. He did so well and didn't even cry. He made my day! Today we are going to Caleb's Aunt Janet's house to make cookies with Granny so that should be fun! Well that's all for now, but I do want to thank all of you who have sent us gifts and cards this holiday season, for you all are so special to us and we love you all. Well hope you all have a very Merry Christmas!

LOVE TO YOU ALL!
Korri, Jared and Caleb

Friday, December 10, 2004 10:44 AM CST

New Pictures!

Hello All,
Just wanted to write a quick update and let you all know that Caleb is doing great! We are going to go Christmas shopping tonight and I know Caleb will love doing that just as much as I do! Ya right! Anyways, we don't have labs till the 21st, but I think I am going to see if we can get them drawn after the holidays. The reason being, is that we are going to a Christmas dinner that the transplant group are putting on down in the med center and I don't want to have to turn around the next morning and drive back down there. It's just too much! Other than that we have all been doing good! We are going to go to my sister house this weekend for a holiday parade and party. That should be fun for Caleb, cause the whole street will be decorated with lights. This weekend we are going to Nana and Papaw’s house for an early Christmas. Thank you to our prayer warrior Myriam for the gift we received in the mail a few days ago. Caleb is enjoying it! Well we are off to the park since the weather is beautiful. Take care and hope you all have a great weekend!

Tuesday, November 30, 2004 10:41 PM CST

Just wanted to update and let you all know what has been going on in our lives the last few days. Lets see on Friday, Caleb gave us a scare. We thought we were going to have to bring him to the hospital, cause he was running a low-grade temp. Well right before he went to bed, I checked it again and it was like 101.3. He was acting a little fussy but still wanting to eat and drink, so I just decided to watch him and see how he was on Sat. Well it was a miracle, cause when he woke up his fever had gone down a lot and by night time, he was back to his old happy self. He has been fine ever since so I guess it was just a 24hour thing or there must have been a lot of people praying for him to have good health that night. I'm not sure if I told you all that we don't have to see our doctor here for 4 months, so we are thrilled about that. Caleb did have labs this morning and they were perfect. His liver numbers are normal and it looks like they are staying that way. WE HOPE! Since they were all good, we don't have to have labs for a month. YEAH!!!! No more driving all the way down to Texas Children's for a while. I think I am going to take Caleb to go see Santa tomorrow with some friends of ours and I hope he does okay and smiles for the camera yeah right! Caleb helped me decorate the tree last night and he actually didn't mess with any of the ornaments today! Oh yea, we had the pleasure of talking to our dear friend Bill, baby Olivia's dad tonight, and it was amazing to hear her little voice in the background just talking away. I guess we are going to have to fly Caleb up to New York so that he can take some lessons from her. She is just doing so great and we are praying everyday that she gets the call for new organs soon, so that she can open a new chapter in her life. As for Makenzie, she is doing okay but is still in the hospital. If you haven't checked out her web page, her mom managed to get her out of the hospital for a while and take some Christmas pictures, so make sure you check those out. Well that is about it for now I will update if there is any news. Also we are going to be making some changes to the website soon! Take care and thank you for everything!

Friday, November 26, 2004 12:06 AM CST

Well I was going to update yesterday, but didn't have a chance! We hope you all had a great thanksgiving! I just wanted to say a few things that we have been thankful for this year: first and foremost, Caleb's donor and his family, with out them making the decision to donate, Caleb probably would not of gotten his second chance at life. We are thankful that Caleb is home and doing well. Thanks to all of our friends and family out there that have done so much for us, we cannot express how we feel about all of you. Thanks to all the nurses and doctors that have continued to care for Caleb through out his little life. A big thank you goes out to Caleb's great Aunt Janet for having all the family over for Thanksgiving dinner. There are many more thanks to give, but Caleb's gran and I are going to take him to the park now. Jared is off at the deer lease with his family, so we are hoping that he is having a great time. Have a great weekend and I am going to try and post new pictures soon. Please don't forget to say a few prayers for our dear friends Makenzie and Destiny, who are still in the hospital.
Love to you ALL!

Wednesday, November 17, 2004 11:40 AM CST

Hi All,
Just wanted to post a quick update! Caleb had labs yesterday and they all look good! His liver numbers have even come down some, thanks to all the prayer warriors out there. He is doing great and just amazes us everyday. He is eating great and trying new things all the time. We are hoping that speech therapy pays off soon, cause we can't wait to hear his little voice. Speaking of speech therapy, the teacher comes tomorrow. It is going to be every Thursday until he turns three. We are going to be attending a meeting in the spring about placing him in a special needs preschool class through the public school. I get nervous just thinking about it, so I don't know how I am going to be when that day comes. We are getting excited for the holidays though, and just hope and pray that Caleb continues to stay healthy. Last weekend was busy but fun. We took Caleb to the Galleria, which for those of you who don't know is a huge 4-story mall with a big ice-skating rink in the middle. He got to see the Christmas ice-skating show and the 4 story Christmas tree being lit. He had a blast watching the kids skate, but me on the other hand was about to fall over from holding him for one-hour straight. You see it gets really crowded, so we had to get our spots early, but apparently it wasn't early enough cause we still couldn't see that great. My mom, sister and I, were laughing so hard at all the people that were breathing down our necks, just to see. My mom and sister wanted to leave about 30 minutes into the show, but there was no way that I was going to lose my spot, especially since I wait an hour for the show. Anyways enough about that, on Sunday it was Caleb's Nana's birthday. We went to Teague for her birthday party and Caleb got to play with all his cousins. He had so much fun and I got some great pictures that I will post soon. This week we have been looking for a new place to live, cause this area isn't all that great. There aren’t any nice parks in walking distance and the public pool is old and disgusting. Also there aren't any little kids around here. Well, just praying that we find a place soon. That's all for now! We see the doc in clinic next Wednesday, so I probably won't update till then. Thanks again for all the wonderful prayers and hope you all have a great week and weekend!

Wednesday, November 10, 2004 11:25 AM CST

New Pictures!
Enjoy!

I just wanted to let you all know how Caleb's labs were yesterday! His liver numbers are slowly creeping back up again. One of them is 100 and the other is 80. Keep in mind that 40-60 is normal. But all his other labs looked good of course. We still have not heard from Pitt. but they are keeping in touch with our Doctors here. Speaking of our doctors here, they want to go up on the dose of Caleb's Imuran. Imuran in another antirejection med that Caleb is on. But we need to talk to Pitt first. So other than that, Caleb is doing great! Jared bought him a gym with a slide and on one side; it has these little steps to climb up. Well of course Caleb has figured out how to do that, so when he reaches the top he just thinks he is on top of the world. It's funny! The speech therapist is coming tomorrow, so hopefully we will start seeing some results over the next few months. We hope you all have a great week and keep in mind that November 12th-14th is The National Donor Sabbath weekend. Please remember to talk to your family about organ donation. And as the saying goes "Don't take your organs to Heaven, for Heaven knows we need them here." Thanks for everything you all do! Take Care!

Sunday October 7, 2004

New Pic's!
Enjoy!
I will update after labs on Tuesday! Have a great week!

Good Afternoon everyone!

Just wanted you all to know that Caleb had a blast last weekend all the Halloween carnivals. He got lots of candy and even participated in doing some of the games. We got pictures so I will post them soon. I think his favorite thing was the hayride at the Bridgestone Baptist Church. He didn't want to get off that thing. We were happy also cause right when we got there we won a gift certificate to a restaurant near our house, so that was nice.
Well there hasn't been much going on since then, just trying to pace myself on eating Caleb's candy. But someone’s gotta eat it, right? Jared and I did manage to go out to dinner and to a movie last night for my birthday. Thank you Grandmaw and Aunt Carrie for watching Caleb last night for us. I know he had fun! Well we don't have labs till next Tuesday, so I probably won't update till then. Take care and hope you all have a great week!

P.S. Please continue to pray for our dear friend Makenzie, for she is in rejection again. And our friend Destiny also needs your prayers as well. We love you guys and miss you dearly.

Thursday, October 28, 2004 10:21 AM CDT

Just wanted to let you all that we had clinic and labs yesterday and thankfully Caleb's liver numbers are still on the lower side. Since our GI doctor left to go to a different hospital, we saw Dr. Karpen, our new GI. He is really nice and he explains things a lot better. He did tell me that a lot of the blood test that they did, all looked pretty normal. There was one thing called the soft muscle antibody and that one was borderline high. Because of that, our doctor wants to do a couple more test that have to do with the liver, just to make sure that we are not missing anything. He did say that if it turns out that Caleb does have this autoimmune hepatitis, then the way to treat it is with steroids. Well as many of you know Caleb's little body cannot handle steroids cause they make him bleed. I did talk to the doctor about that and he said that all that bleeding he was having before may have been because of his spleen being enlarged and not letting the blood flow correctly. So now that the spleen in out, Caleb may not bleed with steroids. I don't think I am buying that because I know how sensitive Caleb intestines and stomach are to any type of change. On another note, our doctor was also getting on to me about putting Caleb in school or a playgroup. He said that he thinks I need a break and that it was time to let go and let Caleb be normal. I want to, I really do, but I just worry about all the germs especially now that the flu season is almost here. I know I have to let him be socialize with other children, but I just worry about his central line being pulled out. Maybe if we can ever get that thing out, I would feel much better. Well I can't wait for this weekend. Tomorrow is that carnival at my mom's school, so I hope Caleb's has fun. Well that's all for now, hope you all have a great weekend and a safe Halloween!
Take Care!

Monday, October 25, 2004 11:34 AM CDT

Hello,
Not to much has been going on here. I did talk to out coordinator on Friday and she said that allot of the blood test that they had drawn on Tuesday, still had not grown anything and some have even come back negative. Which is good news, but she said that Pitt. did call her and said that they wanted allot more blood test this Wednesday at clinic. I still have not personally talked to Pitt. so, I am going to call one more time today, before I really get mad. Caleb had fun yesterday at the ECI carnival. It was a little overwhelming, but it was cute watching Caleb go from booth to booth playing the games and reaching in the goody bags for treats. We took lots of pictures, so I posted a couple on the picture page. Then after the carnival we stopped off at Grandmaw house for dinner. Thanks Grandmaw!

We are going to be pretty busy this weekend. Friday I am going to take Caleb to the Halloween Carnival at my mom's school and then that night Jared and I have a party to go to also. We are also going to celebrate my birthday that night with my friends, so it should be fun. We are dressing up for Halloween, which is something that I haven't done in years. Saturday we have cousin Cullen's birthday party to go to and then that night we are probably going to another party. Lastly on Sunday we are going Trick or Treating with Caleb's cousins in Grandmaw's neighborhood.

I will update if anything changes this week and we hope you all have a fun and safe Halloween. Take care and God bless you all.

Please remember to keep our friend Makenzie in your prayers, for she is still in the hospital, but is improving! Thank You!

New Pic's added, Enjoy!

Friday, October 22, 2004 0:43 AM CDT

Hey everyone,
It's pretty late, but I haven't really had time to update! So I will make this quick so I can get some sleep. We did get labs drawn on Tuesday and thankfully all the numbers looked really well. His liver numbers are almost down to normal range, which is very exciting for us. They did draw all these other labs on Tuesday also, because they are thinking he might have some type of autoimmune disease. I looked it up on the computer tonight and I found something that is called autoimmune hepatitis and I am wondering if that is what they think he may have. The definition I got was that: it occurs when the body's immune system attacks it's own liver cells. What ever that means. I did call and leave a message on our coordinator phone again and I still haven't heard back. I may try to email her. I know they are really busy down there doing allot of transplants this month, but a quick call would be nice. Also our doc's here just sent all the slides to Pitt. yesterday so they should be calling us anyways to tell us what they think. We have labs and clinic again next Wednesday and they are going to do allot more blood test. Caleb's teacher from ECI came and worked with him today and she said that he was just AMAZING! That makes me feel so good. She loves the way that he can problem solve so nicely with things and he has wonderful concentration. We are supposed to see a speech therapist tomorrow at 3:00. so that should be interesting. I can't wait to hear his little voice. My friend is having a garage sell tomorrow and Sat. and I put allot of Caleb's old clothes and toys in it, and let me tell you it wasn't easy. I love to hang on to things waaaaaaaaaay to long! ECI is having a carnival this Sunday, so I think we are going to bring Caleb. Hope Gran is having fun in L.A. visiting her sister, she needed the break, but Caleb misses he dearly. Other than that our weekend should be pretty calm. I will update if anything changes! Thank you for caring and all your precious prayers. From the bottom of our heart: thank you, thank you, and thank you! Goodnight and God bless!

Thursday, October 14, 2004 11:36 AM CDT

Okay lets try this again! I had just typed almost the whole journal entry and Caleb just came over and put a puzzle on the keyboard and it deleted everything. I think it is his way of telling me to get of the computer. So I will try and make this short.

As many as you know we had clinic yesterday. They did not draw labs since he just had them on Monday. So, right when Dr. Quiros walked into the room I was pounding him with the results from the biopsy and I was not that happy with the news. There was some good news and some bad news. The good news first is that there is no rejection. The bad news is that they saw some type of hepatitis, which is caused by an infection or toxins in the liver. Dr. Quiros seemed as if he was reading my mind, cause everytime my face expression would change he would know what I was about to say. They are going to do a whole bunch of blood tests next Tuesday and talk to Pittsburgh about a plan. I myself called our coordinator in Pitt and of course I have not heard back. Dr. Quiros did tell us that they sometimes see this happen in transplant patients. He mentioned something about changing Caleb antirejection medicine, but needs to talk to Pitt. That's all he really told us, so please, I am asking you right now to stop reading and say a prayer for Caleb, that his liver heals and gets rid of what ever is going on inside his little body.

Also we think we know why Caleb has been having those maroon looking stools every so often. Since his platelet count is still really high, he has to take baby aspirin. Well the aspirin is irritating the lining of his stomach and is making him have some bleeding. So we went up on the dose of his antacid medication and started him on some iron. Then Dr. Quiros proceeds to tell us that he will be leaving and going to a different hospital. You could tell that he was nervous to tell me; I guess cause he knows that we just lost our best transplant doctor in Pittsburgh. We are okay with it, cause the doctor who we will see now is very nice and you can tell he loves kids. He is actually the one who is always there, when we get admitted, so he knows allot about Caleb.

Okay, since we had 3 hours until Caleb dentist appointment yesterday, my mom and I went to meet my sister Kristin for lunch. It was nice, but poor Caleb feel asleep in my arms at the lunch table. I just want to say thank you right now for my mom being able to go with me to all Caleb's appointments yesterday. THANK YOU VERY MUCH! She helped me out allot.

So 2:00 finally roles around and we go to the appointment and we were there for like 5 min. The dentist came in and looked and said a few things and that was it. Caleb did pretty well, but what the dentist said was not all that great. Now before, he told us that Caleb's adult teeth would be white and look normal, well now he is saying that he thinks that Caleb's adult teeth will still be discolored, because your adult teeth start forming when you are born and since Caleb had liver disease up until he was 8mos old, he thinks that there was probably some damage to those teeth. He did mention that we could get them bonded, capped or crowned, but not until he is much older. From working in a school, I just know how cruel kids can be and I just worry about him being embarrassed about the way he looks. We will just have to teach him to tell people that he is a miracle. Also the dentist said that Caleb's teeth in the back are not formed right and that they do not have enamel on them, so they are very prone to cavities, which means we have to make sure that we brush them twice a day.

So that's it in a nutshell. Not the best news, but at least his is feeling great and running about here like crazy. I am going to take him out to swing now, because this weather today is gorgeous. Please keep all of us in your prayers so that we have the strength to keep on going. Life is never guarantied, so we all try to live life day-by-day, moment-to-moment and to the fullest of our ability. God bless you all and thank you for joining us on our journey.

Monday, October 11, 2004 2:58 PM CDT

Hi All,
We just got a call from our coordinator about Caleb's labs this morning and they all look pretty good. His liver numbers are coming down nicely. One of them is under 100, which is great, cause just two weeks ago they were in the 200's. We still have no results on the biopsies yet. The coordinator said that she talked to Dr. Quiros and he said that he would call the pathologist him self and find out the results. He also said that he sent the biopsies for allot more tests then usual and that may be the hold up. I don't know, that's kind of weird, cause they should at least know if it's rejection by now. In Pittsburgh we find out the next day.

Other than that, we really didn't do much over the weekend. Caleb got to spend time with his Aunt Kristin and Grandpaw yesterday, but he wasn't on the best behavior. He was kind of acting a little punky and I was worried he may be coming down with something. Today he is acting fine, so I don't know. I am just praying that everything is okay. I think he may need blood. His blood levels are a little low, but they are not concerned, because he doesn't seem to have any bleeding going on. His level was the same last Tuesday, so it is a little concerning why it hasn't gone up.

We really don't have much going on this week, just clinic and a dentist appointment on Wednesday. So that should be fun being at the med center all day. Caleb doesn't have a Halloween costume yet, so I think we are going to do that this week also. Very sad that the Texan and Astro's both lost their games on Sunday, it was a sad day. But the Astro's have one more game tonight to try and go to the national championships. Good luck Astro's!

Well that's all for now! Just know that we are so thankful to have all of you checking in on us daily and praying so hard for Caleb. We love you all! And please continue to keep our friends Makenzie and Destiny in your players also. They are both doing better, but still need lots of prayers. I am sure many of you check in on Makenzies website often, but little Destiny has a website also. It is www.caringbridge.org/tx/destiny

Have a great week and I will update soon!

Tuesday, October 5, 2004 4:43 PM CDT

We are Home! I am so thankful right now to be able to update from my own computer. I thought I was going to have to update from the hospital today, but thankfully we got out of there. Well I am sure you are all anxiously waiting to read this update, so here it is:

Caleb is doing really well. His liver biopsy went well yesterday, but we do not have the results yet. His liver numbers have come down by 100 points. Thank you Lord! They think he may have gotten a little bug and that is why his numbers went up so quickly, but nobody knows for sure. We don't have to have labs till Monday and we don't have to see our doctor till the 13th. So as you all can tell, your prayers were definitely heard and we are very thankful for all of you who took the time to talk to God! Caleb is very happy to be home and is pulling on me right now to take him outside to swing. Thank you for everything and I will update as soon as I know more.

Please be sure to keep our friends Makenzie and Destiny in your prayers also, for they are going through a hard time right now. Stay strong you two! We love and miss you both!

Have a great week and I will update you all soon. Thank you again for all your prayers!

Friday, October 1, 2004 1:23 PM CDT

Just wanted to let all of you know we are still waiting on lab results from this morning and that we are still on for the biopsy on Monday. Praying that we will be able to get out of the hospital on Tuesday. I just have a feeling that they will try to keep us there until they talk to Pitt. ,and who knows when that will be, since they are so hard to get in touch with up there. On a much happier note, Caleb hasn't had any maroon looking stools for a couple of days now, so we are very thankful about that. Not really sure what it was, but just glad it's gone. God defiantly heard all your prayers. I will keep you all updated later about his labs. Take Care!

Tuesday, September 28, 2004 8:10 P.M.

Friends and Family,
Well here we are again back to square one with Caleb's liver numbers. They have taken a big jump and he is scheduled to have a liver biopsy on Monday at 8:00am. What's new there, I think it will be Caleb's 5th biopsy. We have to be admitted for 23 hours. Sounds a little strange to us, because in the past when he had a liver biopsy we only had to hang around for 4 hours afterwards to make sure that he wasn't bleeding. Please pray that everything goes well and that we don't have to spend any additional nights there. Caleb has labs on Friday again to check all his levels to make sure he is okay to have the biopsy Monday. We also have come into another issue. Last night his stool output has changed in color. Looks as if there might be some bleeding going on AGAIN. Please pray that all this gets better for him, so he can continue to have a normal life as best as we can. All I keep saying is "how do we move on with our lives, when we never know what tomorrow will bring." Thank you for all your prayers and taking the time to care. We love you all! Goodnight

Friday September 24, 2004

Just wanted to let everyone know that Caleb's liver levels went up again. We have to have labs again on Monday and if they are still elevated then Caleb will have another liver biopsy. His prograf level was good this time so we did not have to go up on the dose. They think he may have a bug or somthing, but he is acting fine. We are getting really frustrated about this liver thing. Being this far out of transplant you don't usually have elevated liver numbers. I think we are going to really talk to Pitt. about changeing his antirejection drug. Other than that all his labs looked good. We have not heard anything yet about the ct scan, but I am going to call today. Have a great weekend and be safe. Thanks for checking in on us and all your prayers.

Wednesday September 22, 2004
Hi everyone,
Well let's see where do I begin? Last Friday after the ultrasound we got a call from our coordinator here and she said that Caleb's ultrasound pictures were no good because he was moving around to much and they couldn't see the veins very well. Well I wasn't here when she called and told Jared that, but if I was, I would have been really mad because yes he was a little wiggle worm, but at the end he fell asleep and the doc and tech looked at the pictures and said everything looked fine. Anyways since they couldn't see anything we had to go Monday and have an IV CT scan to check the veins and arteries that way. I still haven't heard anything from that test and we pray that everything looks okay. Since we had just been to Texas children's Thursday and Monday I was pretty worn out of that place and asked if we could have labs this morning instead of Tues. Which that was fine, so we are still waiting on those results also. Caleb is doing well through all the testing and labs. Unfortunately I think he is just used to it. Other than that everything is going pretty good. Jared is still out of work, but continues to do side jobs. He has sent his resume into some homebuilder companies, so we hope to hear something soon. I hate to ask this because you all have done so much for our family, but if any one knows anything or anyone in the homebuilding or electrical business who is hiring, we would really appreciate it. If you do, please email me at the address below. Thank you for taking the time to check in on our family and all your prayers.

Wednesday September 16, 2004

Just wanted to let you all know what has been going on over the last few days. Yesterday our coordinator called and said that Pittsburgh wanted Caleb to have an ultrasound of his belly as soon as possiable. Well the coordinator took it upon herself and scheduled us an appointment this morning at 8:00am. I was kinda upset, because she didn't even as me what day would be good for us or if we had plans this morning or anything. Anyways, we did go down to Texas Children's this morning, but we were about 15 minutes late. Owell they should of given us more time to plan. The doctors just wanted to make sure that the cluster of vessels that were in his intestines a month ago were gone. The ultrasounds techs didn't say anything so I guess everything looked okay. I am suppose to find out tomorrow the final results. Please pray that everything looks okay with the tests. Also today I took Caleb up to his Grans school and he got to play with other kids his age. They were just loveing the new boy in class. It was so funny to watch him with children his age. I want to start bring him up there at least once or twice a week just to get that experience. Well that's all for now!

September 14, 2004
Well we just got a call from our coordinator here about Caleb's labs. Seems as if the perfect liver numbers have gone up again. All of the other labs look great, except the two numbers that took a jump. His prograf (antirejection) level was a little low, so that may be why his numbers bumped up. Please pray that these numbers go down again. It felt so good, to know that everything was perfect for a while and we would love to feel that again. I guess God is just keeping us on our toes!

This weekend was pretty low key, but fun! Saturday we went and watched Caleb's cousin's Matthew and Emily play soccer. It was so funny cause all Caleb cared about doing was to try and run on the field as fast as he could. I guess when he gets older; we may have to put him in soccer.

Sunday we were able to finally meet Myriam, one of our prayer warrior's from Las Vegas. It was so great to put a face on just one of our special friends, whom we have never met. Thank you Myriam for all that you have done for our family. You're truly amazing and we hope you have a safe trip back to Las Vegas.

We have to get labs next Tuesday, so until then, take care and remember God is always listening!

Monday September 13, 2004 @4:10p.m.

One New Picture!

Well I don't really have much to journal about today! I guess no news is good news, but I just wanted to let all of our dear friends and family know that everything is still going great! Caleb has been doing wonderful and we are just enjoying our time at home. We have to give a big THANKYOU to Caleb's Gran and Grandmaw for watching Caleb last weekend, so that Jared and I could have some fun time with friends. We really appreciate all they do for us! Caleb does not have labs till the 14th, so until then I probably won't update. Unless something exciting happens or I post new pictures or something. Well thanks for checking in on us and know that you are all so special to us.

Thursday, September 2, 2004 11:07 AM CDT

GREAT NEWS!

Yesterday's labs looked wonderful! Thanks to all of the wonderful people who have been praying like crazy for Caleb throughout his journey. Your voice is definitely being heard high above the clouds. All of his labs were in normal range, except for his platelet count, which is why we are giving him the baby aspirin. The level did come down a little bit so we know that the aspirin is working. We are hoping that Caleb's central line can finally come out in a couple weeks. We don't have labs till the 14th, so we are going to try and schedule to remove the line around then. Caleb had this teacher from ECI come this morning and he worked with her so nicely. She was very pleased on how well he is doing. Caleb can draw a circle on his magna doodle and we think he is trying to say some words like: apple, circle, blue, and baby. We think he is going to be a perfectionist, cause he likes to organize things all in a straight line or place them all in one spot. He is so funny! Well we think the terrible twos have finally arrived. Yesterday at clinic Caleb was not on his best behavior! We also got brave and took him to get his pictures made, which was an absolute nightmare! Caleb did not what to be there at all. I tried everything like peek-a-boo, singing songs, making funny noises and nothing was working. As you can tell the girl who was taking the pictures did not know how to make kids smile, so I had to make myself look ridiculous. I hate to admit this, but can you believe that I even got down on the floor and was tiring to play peek-a-boo with him. All that did was make him mad, cause his couldn't be down on the floor as well. Anyways, after being there an hour, we finally only got two shots that were okay. I don't think I will be doing that anytime soon. Well we don't really have any plans for this weekend, just relaxing at our HOME sweet HOME! Thanks again for checking in on us and taking time to pray for our family!

Sunday, August 29, 2004 9:24 AM CDT

New Pictures!

Hooray!!!!!!
We finally made it home on Friday afternoon and things have been going great. The minute we walked in the door, Caleb started running around to all his toys and the look on his face was priceless. He was so happy to be home and so are we. Caleb has clinic on Wednesday so hopefully everything will look great. His labs have been good for a while now and we just hope that they stay that way. We weren't happy that we had to venture all the way to Pittsburgh, but hopefully by taking Caleb's spleen out was the answer to all the problems. We did enjoy spending time with Logan, Makenzie, Destiny, and our new friend Alli and her mom Amy. We are so thankfully to have friends that know what we are going through. We also had a great time with Grandmaw and Granny and are so thankful that they were able to drive across the country to see us. We hope they had a fun time seeing all the different states and spending time with each other. We actually are a little jealous for they got to go to New York City and see the statue of Liberty, then venture down to Washington D.C. we hope they had a fun time and are so happy that they got to have this opportunity. Well that is all for now, but I will try and update after clinic on Wednesday. Thank you for all of your prayers for they are what has gotten Caleb home and doing so well. Just know, that you are all very special to us and can not thank you enough. Take Care!!!!!!!!!!

Thursday, August 26, 2004 2:49 PM CDT

Clinic went well this afternoon. All labs looked good except for his clotting factors which is easily fixed with childrens aspirin. All is in line for our flight tomorrow back home. Please pray for a safe trip. Thanks.

Tuesday, August 24, 2004 12:59 AM CDT
We finally got discharged after a 6 hour wait at the hospital on Monday and are now back at the Residence Inn. Clinic is on Thursday and we see no reason why anything should hold us up for returning home on Friday. Caleb is doing great, he seems to be his normal self again. Every trip to we make to Pitts gets shorter and shorter but every trip makes us miss home that much quicker. Guess we were getting use to a normal life and can't wait to get home to continue with our normal life. Grandmaw and Great Granny left this morning after a nice visit but I think i was getting ganged up on with 3 women around. Not much else on news so hope to see some of you this weekend. (especially ones with boats) :)

Friday, August 20, 2004 12:18 AM CDT
I'm not sure what is going on but I already updated once and it's not there so here we go again. Caleb is doing better and better everyday. He is eating well and doesn't seem to be in any discomfort. He actually walked last night a little bit with me and stood up by himself in his bed this morning. Docs came by this morning with good news. Discharge on Monday.... clinic on Thursday.... then home!!! Korri left with our friends to an outlet mall about an hour and a half away so Caleb and I have the whole day to ourselves again. Please stop reading and say a prayer that she doesn't spend the money we don't have. On another note, Caleb can't wait to get home so his daddy can go fishing and catch some 'Stros games. (hint hint Jeff) We just got back from going out and picking up lunch so it's time to eat. Caleb says for Grandmaw and Great Granny to hurry up and quit with all the potty breaks. Also can't wait to see to see Aunt Carla tomorrow. Take care everyone and pray us home. :)

Friday, August 20, 2004 11:26 AM CDT
Caleb is feeling better and better everyday. Korri has left to go with our friends to an outlet mall about an hour and a half away so Caleb and I will have the day all to ourselves again. He is eating good and doesn't seem to be hurting much. He actually walked some last night and stood up by himself this morning. Doc's are here now so we will see what they say. Ok, they say discharge on Monday... clinic on Thursday.... then back home after that. Caleb can't wait to get home so daddy can go fishing some more and catch a few 'Stros games. I am starving so we are going to run across the street and grab some lunch.

Wednesday, August 18, 2004 2:21 PM CDT
Ok this is the third time now I have wrote this so it is going to be even shorter than the second time. Caleb slept most of yesterday. Woke up about 8pm wimpering until 2am. Korri climbed in the bed with him and stayed the night. He was recieving pain meds every 2 hours or as we saw fit but hasn't had a dose since 7am this morning. Caleb feels much better today and is looking forward to eating tomorrow. We will let you all know how that goes. Thanks again for everyone's prayers. Sorry so short but I feel like I just wrote a 10 page essay.

Monday, August 16, 2004 10:21 AM CDT
Surgery rescheduled until Tuesday at noon. It is rescheduled due to the shortage of beds in the ICU. However, this boy is eating everything. He had half of mom's Taco Bell bean burrito last night(as if his diapers don't stink enough already) and potatos with ketchup and a side of sausage for breakfast. Not everyone knows but we swear Caleb always says Abigail. We say it's his Angel or imaginary friend he always laughs at. Anyways, we have another roommate today and Caleb started saying Abigail again. A few minutes later I hear the mom talking to her daughter named....... you guessed it...... Abigail. How weird is that. Other than that there isn't any new news. I know everyone prayed for Caleb and his surgery today and i'm sure once everyone finds out that it isn't until tomorrow, they will pray again. How lucky is he to get double!?! We will update tomorrow as soon as we give all the freaking out grandparent's a call.

Saturday, August 14, 2004 7:54 PM CDT
Caleb is really enjoying his food again. He will eat just about anything you shove in his face.(as long as it is what he likes) We ran out of Dum Dums so we bought him some blow pops. Thought they would be too big but he already has it down to the stick. Still NO bleeding. Caleb's surgery is scheduled for Monday at 9:30am. Estimated time is 3 hours with about a week and a half of recovery. Please keep praying that the spleenectomy goes smoothly and that it was indeed the source of his problems. Probably won't be an update tomorrow unless something happens or he just does something funny enough I have to tell. Hope to see you all in 2 weeks!!

Friday, August 13, 2004 5:37 PM CDT
Well the scopes today went fine. He had one down his throat and the other up his bum so you just imagine all the air coming out of this boy. The upper showed the ulcerations but they seem to look better since last Saturday and looks to be the area of the cluster of vessels seen on other tests. The lower scope was our first look at his bowel where his take down stoma closure was performed and looked great. I am sure everyone has heard by now that Caleb is scheduled to have his spleen removed on either Monday or Tuesday. We are told that the surgery should take about 3 hours. They are expecting his recovery to last approximately a week and a half. Without his spleen, Caleb will need to be on penicillan for life. Whats one more med anyways? All in all Caleb's numbers look good. He finally got of his iv fluids today and is a MESS. We took him for a walk and he is all over the place. Everyone here says he has gotten HUGE. Thats about it for now. We will update with any new info.

Wednesday, August 11, 2004 9:11 AM CDT
Hello everyone. It's been a long time since dad did an update. We were just commenting on how hot and humid it was here, so Caleb booked us a personal jet to Pittsburgh. I have not made it to the hospital yet this morning due to packing so I do not know all the details. Apparently what they found from the catscan is why we are going. I'm thinking it is because they found a cluster of veins piled up in one spot in his intestine. This is probably the source of his bleeding. Like I said, I am not positive and will have to get the low down as soon as i get back. I will try to update with detail later as i must hurry back so that Korri may return home and get her stuff packed. No need to tell anyone to pray because you all have been so faithful to do so without asking. Thank you so much for that. Oh I think Caleb jsut really wanted to see his pals Logan and Mak. Hopefully somehow maybe he can visit Ms. Olivia too. Turn in later for more Caleb updates.

Saturday, August 7, 2004 12:40 AM CDT

Where Shall I begin?,
Well, I finally was able to get away from all the busy stuff down in the room and run up to the library to update. I first just want to say a big THANK YOU to everyone who has been praying and praying for us these few days. All of your encouraging words help us immensely with copping through all of this. Caleb is actually doing really well. The Doc's did a scope down his throat this morning to see if they could find a source of any active bleeding and to take biopsies to check for rejection! Thankfully they did not see any active bleeding, but did see some old ulcers that could have been the cause of all this bleeding. We are a little confused at why he is getting ulcers if he is not on steroids anymore and also he has been on meds to prevent him from getting ulcers. They also saw some bumps inside his intestines around where they connected his own intestine to the donor intestine. Many of you probably do not understand any of this I am saying, but I know some of you do, so I am trying to explain it the best I can. Anyways, they are not really sure what these humps or bumps are so they took biopsies of them and we won't have the results back till Monday or Tuesday. They did mention something called EBV or PTLD, but he was tested for all of those during his last scope in April and everything was negative. So it is hard to say what these bumps are. We do know one thing though. If it is this PTLD, then we will not be staying here at Texas Children's, we will be flying out to Pittsburgh. Not that this hospital isn't great and all, but we just want to be with doctors that are around this kind of thing all the time. Also Caleb's liver numbers are normal today, it is so strange because every time he is in the hospital his numbers always become normal. If it is not one thing, it is another with him. Silly boy! Caleb’s white blood count is dangerously low right now, so the doc’s and nurses have to take special precautions with him so that he does not catch any nasty germs. Our GI doc’s called hematology to try and figure out why his white blood count is so low. Oddly, the doctor who came by to see us, used to be Caleb ICU resident doctor is Pittsburgh right after his transplant. Funny! It’s such a small world, but it was nice to see a familiar face. There has been two doctors that we now know of so far that have chosen to come here from Pittsburgh, so that make us feel good I guess. Many of you ask how we are doing; well we are doing pretty good. Just very bored and almost movied out! Having a life like ours may be hard to imagine for many of you, but we have gotten used to it and there is nothing that we cannot handle. All we can really do is Thank God, live life to the fullest, and take everything day by day. So that is everything in a nutshell. I will try to update again as soon as I can! Thank you all again for you continuous prayers and take care!

Wednesday August 4, 2004
~~~New Pictures~~~

Hi!
Well, we are Wiggled out! We went to the concert today and Caleb had a blast. He didn't really know what to think at first and just wanted to watch them on the big screen TV, but after a few songs he was watching them on the stage. It was funny, we had got a big tub of popcorn and Caleb probably ate half of it. Piggy! Anyways we are very thankful that Caleb was able to experience this.

But as always, fun things must come to an end and Caleb has decided that he hasn't been sick in a while and now has a fever! He actually had a low grade one last night and I just gave him a little Tylenol. We thought it did the trick, but we were wrong. The low grade fever came back when we got home from the concert. He is sleeping right now and if he still has the fever in the morning, then we are off to the hospital. Please, I am asking all of you to pray that this is nothing major and if we do go to the hospital then it will be a short stay! Our friend Peyton is turning 4 this Saturday and we don't want to miss her party! Well, God Bless you all and please continue to pray! The story of our life, is a never ending one!

July 30, 2004
Everything is pretty much the same here! Caleb had clinic on Wednesday and all the labs looked pretty good. One of his liver numbers came down 30 points and the other stayed the same. So we are very happy about that. We do not have labs again till Aug. 10th and we don't have to go back to clinic for a month. We did talk about getting Caleb's line out again and we all agree here that it should come out, but we just have to convince Pittsburgh. Caleb is now the master at throwing the cushions and pillows off the furniture so that he can climb and stand up on them. It's to funny! Last night he used his muscles to push the ottoman right up against the T.V. and climbed up on it to watch Blue's Clues. I tried to get a picture to share with all of you, but as soon as he saw what I was about to do, he got down. He continues to have ECI come over to our house twice a month. Which isn't a lot, but he enjoys it when his teacher is here. He still isn't saying any words, but makes lots of noises, like he is trying so hard to say something. I may bring him up to my mother's Montessori school this week, so that he can interact with children his own age. I am a little afraid about the germs, but I will just have to wipe down things before he touches them and make sure he isn't around any sneezing, snotty nose, or coughing kids. Which will be hard, but I think it will be okay. I cannot keep Caleb in bubble all his life. He will never develop social skills, friends or anything. Well there's not much going on; just trying live life one day at a time and thanking GOD everyday that Caleb is doing so well and that we are home enjoying life as a family. Thank you for all of your continued prayers for God is truly listening! Take Care!

Tuesday, July 20, 2004 9:28 AM CDT
New Pictures!!!!

Hi everyone
Caleb got to experience his first time at the beach this weekend and he absolutely loved it! It's not white sand and blue water or anything, but he didn't care. At first his walked right into the water kicking the waves and then he decided that he had had enough and started walking toward our beach chairs. We played in the sand, while dad went looking for seashells. The boys next to us were feeding the seagulls, so Caleb enjoyed watching them fly over our heads. Dad took Caleb out into the water, holding him of course, and he really liked it when the waves rolled up and they had to jump up so that Caleb's line didn't get wet. We are so happy that Caleb loved his experience at the beach and we hope to go again soon.

Everything else is going great here and since Caleb's labs were pretty much the same as last time, we don't have to have labs till next Tuesday. Yeah! We hope that we can continue this trend, so that Caleb can get his line out. The doctors here are ready to take it out, but we still have to talk to Pitt. I think they are thinking that we should come out there for a scope and biopsies so that they can figure out why Caleb's liver numbers are not going down, but we can do all that from here, so we will see what happens in the next few weeks. Please pray with us that we don't have to go out there anytime soon. Also, since work is slow at the union for Jared, he has decided to start up his own electrical company. I just want to ask all of you to please pray that this is a good step and he is successful with this.

We officially are taking Caleb to the Wiggles on Aug. 4th. We can't wait, we have 4th row, and we hope that Caleb has a blast. It should be interesting to see how he acts, when they are up close in person, rather then him baring his face into the TV. Screen. Funny! Well we hope everyone is doing great and thank you for caring! Take Care!
Love
Korri, Caleb and Jared

Monday, July 12, 2004 11:29 AM CDT
New Pictures!!!

Hi All,
Sorry I don't update as often as I used to, but life is being pretty good to us these days. Caleb is just growing up more and more everyday and we can't wait till he starts talking! We have labs tomorrow, so we are still praying that everything looks good, so we can get his central line out! Congrats to our friend Logan for getting his line out last week. Good job Logan we are proud of you and we miss you guys! We hope everyone is doing good and thanks for your continued prayers! Have a good week!

Saturday, July 3, 2004 11:38 AM CDT
Hello All,
Things are still going good here at home! We are about to go to a friends surprise birthday party, but I wanted to let you all know that Caleb's labs last week were really good. Both of his liver numbers have come down 30 points! Yeaaaaaa! The doctors were pleased, so we do not have to go back for 2 weeks now for labs. Caleb has always gotten labs drawn once a week, so this is a big deal for us! We just pray that the labs look good again, so we can continue this path. We did talk to the doctors about removing Caleb's central line and they think if he can go every two weeks with labs then we can get it out. Yeaaaaaaaaa! Please join us in praying that this happens!

On another note, Caleb has mastered crawling up on the furniture and standing up! It's scary! Last night his Gran was watching him in his room and she went into the kitchen to get a drink and when she came back, Caleb was standing in the rocking chair trying hard to pull down the blinds. Did I mention before that he is getting so smart! He can also put and match colored objects to the right places and knows how to do the wooden puzzles correctly. He just amazes us everyday.

Well we have to go, but we hope you all have a great 4th of July! Thank you for your prayers and taking the time to check in on us! Bye

Tuesday, June 29, 2004 9:56 AM CDT
Hello,
Well all is still doing great! We did have labs drawn this morning, so as many of you know, will not know the results till this afternoon. Caleb is doing well though, just being his smart and silly self. He has started doing so many great things, that we just always say, "Caleb's so smart." He absolutely loves to stack things, so you will catch him stacking different types of things throughout the house. We had a great weekend just spending some time with Nana and Papaw up at their farm. Caleb got to ride their horse Tom and even go swimming in an even bigger swimming pool then the one we have at home. He had fun, but he was so tired that he was trying to lay his head down on the raft and go to sleep. Poor Boy! I did get a message from our coordinator in Pitt. and she said that she had talked to our doctor there and that he wanted us to consider coming there this summer, so they could figure out what is going on with Caleb's liver numbers. Well, we are going to ask them if we could please just try some different things here for awhile before we head back up there. Especically when Caleb is doing and acting so great! Other than that not much is going on! Thank you for all your prayers. Also please pray for all our friends in Pitt. We hope you all have a wonderful Forth of July and thanks for checking in on us!

Tuesday, June 22, 2004 11:35 AM CDT
New Pictures!!!
Well everything is still going good! We have Clinic tomorrow so we just pray that everything still looks great! We had a good Father's day down at the Bay House with Family! Caleb started doing the motions for the Itsy bitsy spider, it is so cute! Other than that, not much has been happening! Just trying to live life to the fullest! Thanks for all your prayers and checking in on us!

Wednesday, June 16, 2004 9:14 AM CDT
God is so great!!!!
Caleb has been doing really well and loves the swimming pool in the back yard. He is not scared of water anymore and is always going into the bathroom and actually trying to get in the tub when there is not even any water in it. It is so funny. It was Jared's niece Alicia's 16th birthday this weekend and Caleb had a blast running all over the dance floor with all the other little kids. It was great being able to meet so many people there that have been praying for Caleb since our journey began. I just want to thank all of you again for all your precious prayers and all you have done for our family. We are going to go out to eat tomorrow with our dear friends Shelly and Rachel. They are the two nurses who took such good care of Caleb in Texas Children's. Can't wait! Please continue to pray for Jared, for he has not had any luck on a job yet. We did have labs yesterday and they all look pretty good. Since we went up on one of his antirejection meds, his liver levels have actually come down some. So we just pray that they continue to tread down. There hasn't been to much going on here, just trying to live life like normal people. Friday night our friends are throwing a big birthday bash for like 5 of our friends, so that should be fun. Other than that, our weekend should be pretty calm. Well take care and thank you for your continued prayers.

Friday, June 11, 2004 6:35 PM CDT
Hello All,
Sorry for the delay in updates, but there hasn't been to much going on! We did have labs last Tuesday and everything looked about the same as the week before. Our coordinator in Pitt. finally called us and said that they want to leave his prograf level alone for now and go up on his Imuran, which is the other antirejection drug he is on. So hopefully this will help his liver numbers go down. Other than that he is doing pretty good. We got brave and bought him a little 6ft pool. I thought he would hate it, being that has never been in a lot of water before. But I was wrong, he absolutely loves it and he even cried when it was time to go in. We put him in it again today and he was in the pool for almost 2 hrs. His poor feet looked like a 90 yr.old mans. I will post so new pictures soon. Hope all is well with everyone and thanks for stopping in. Take Care!

Tuesday, June 1, 2004 11:16 AM CDT
New Pictures!!!!!!!!!

Hello,
Hope you all had a great weekend and a fun Memorial Day! Our weekend was pretty busy, but went smoothly just hanging out with friends and family. We do not have labs until Thursday. So we are still praying that Caleb's liver numbers are staying stable and haven't jumped up again. He is feeling great and walking so much better. He does fall often, but that is because he thinks it's funny to spin around in circles and get dizzy. We are trying to get him used to being in the bathtub, so this weekend we tried it again, and it worked. He loved being in there and didn't want to get out. He thought the bubbles tasted good and wanted to eat them! Yuck! Jared's Graduation was on Friday night; it was great to see him up on that stage getting his diploma. He has had a hard last 2 yrs. struggling to get to the end, because of all the trips to Pittsburgh. Thankfully the union and all the teachers, where so nice to let him make up all the lost classes and he was able to walk across the stage. Thanks to all your prayers and Gods way it was possible. Now all we have to do it pray that Jared gets a job soon. Since he took a voluntary lay off in March, when we went to Pittsburgh, there has been no work for him. His name is on the books at the union, so as soon as a job comes available they will call. But it has been 3 months and we haven't heard anything. So please keep Jared in your prayers, that he gets a call soon. Although he is staying busy with side jobs, a more stable one would be nice. Thanks to Gran, who babysat Caleb yesterday so Jared and I could have some fun at the lake! We really do appreciate it! We love you all and thanks for checking in on us!

Wednesday, May 26, 2004 3:07 PM CDT
Hi All,
We had clinic this morning and everything looked fine! Caleb's labs all look good! His liver numbers are still high, but they are okay with the numbers. We just have to continue to watch them weekly. We do not have to go back to see our GI doc for a month. We talked a little about Caleb's central line coming out this summer, that way he could go swimming and actually enjoy being in the bathtub with no worries of water getting in the line and getting an infection. The viral cultures they took from the liver biopsy, where all negative. Which is great! The doctors still are going to have the head pathologist look at them just to see what he thinks. Have not heard anything from Pittsburgh about this issue. Caleb is feeling fine and eating really good! He now has his own teacher that comes out to our house. She works on everything with him. Hopefully we will start hearing some words soon. They say he is on a 12 to 15 month range, but catching up quickly. He is in the 95% percentile for his age and height. Not to much going on this week, but I will update soon. Please keep all the prayers coming for Caleb, for you all have helped us get this far. Please also save some prayers for our friends Makenzie, Olivia, and Destiny for they are having hard times right now. We love you guys!!! Thank you for everything

Friday, May 21, 2004 10:49 AM CDT
WE ARE HOME!!!!!!!!!!!!

We have to first start by saying thank you God for listening to all the prayers that come to you daily from all the awesome friends and family that we have! Your prayers mean the world to us and we may not get a chance to tell you all that, but just know that you all have a special place in our heart always and forever.

We are home and Caleb is doing well. Yeah, we got sleep in our own bed last night. I can not explain how cozy it was, we did not want to get out of bed this morning to get Caleb's labs drawn again, but you gotta do what you have to do. Caleb is scarffing waffles down this morning and laughing at Blues Clues. He is so happy because he has not had his waffles all week.

Anyways about Caleb's biopsy. It did show mild rejection, which is not a surprise to us at all. He has been battling this liver ever since transplant. The doctors did a viral culture from the liver also and that is showing that there is something going on. He may have a virus as well as rejection. The finally results will be back this afternoon about what kind of virus it is. The doctors did not what to send us home until they got the results back today, but after convincing them they agreed with us that there isn't anything that we can't do from home, that they would do there. Also we are waiting on Pittsburgh to make a decision on what do to with Caleb. You see it's a difficult situation, in order to treat rejection they would give steroids, well Caleb can't have them because his ulcers may bleed again. So all they can do is go up on his immunosupression drug, which lowers his immune system and he could get sick very easily. Well when transplant kids get a virus, they usually drop their immunosupression so that their immune system goes up and they can fight it off. We are pretty worried, because we are in the middle here, what do we do, is the question for the doctors. I don't even think they know, they try all kinds of new stuff on these kids all the time. Well that is all for now, I will keep you all up to date as soon as we here something! Thank you again for all your prayers and please keep them all coming. Have a great weekend!!!!!!!!!!!!

Monday, May 17, 2004 1:44 PM CDT
Hello,
HI just ran home to get some things, while Jared is with Caleb at the hospital. We may not update as often this time in the hospital, because we do not have the same access to a computer. So I we will do our best to keep everyone informed, try to check in the guest book for resent updates from Caleb's Grandmaw! As of right now, Caleb is doing great. He is back to his funny self and wants to walk around everywhere. They had started him on fluids yesterday for the dehydration, but today he is already off of them. We do not know what the plan is yet for the elevated liver numbers, but I am guessing a liver biopsy! I will try to let you all know the plan soon. Thank you for your prayers, God is listening!

Thursday, May 13, 2004 10:31 AM CDT
NEW PICTURES!!
Hello Everyone,
So sorry for the delay, but it has been pretty busy around here. Between Caleb's great-grandmothers funeral, the family reunion, Daddy's birthday, Mother's day, and ECI coming over to evaluate Caleb's progress we haven't had much time to spare. Although, we have been busy, we are very thankful to say that we have now met more of the wonderful friends and family that have prayed so generously for Caleb as well as ourselves. We are so blessed to have met you all and thank you again for your kindness.

On another note, Caleb had labs drawn on Tuesday and they are still showing that his liver numbers are elevated. They are now in the 200's which they have not been that high in a long, long time. The plan is to go up on his antirejection drug AGAIN, and check labs next Wednesday. If no change, then we will go up on another med he is on, and if that doesn't do anything then probably he will have to have a liver biopsy. Please pray that the numbers start to go down, because we do not what to have to put Caleb through another liver biopsy. Also a few days ago, the coordinator here at Texas Children's, called the other day and said that a stool test for the adno virus they did on Caleb when he was in the hospital in April, has come back positive. That may be our answer why he had gotten sick that time. We had to go down on his antirejection drug, so that the virus would clear, but now we are battling high liver numbers. It's crazy. We did have to give them another stool culture on Tuesday to make sure the virus is gone.

Caleb has been great among all this busyness and drama; we did get to d/c (discontinue) his physical therapy! They think he is doing wonderfully. He now has his own teacher that is going to work on a little bit of everything. Well I think that is all for now, we will update soon. Take Care and please keep the prayers coming!

Tuesday, May 4, 2004 1:50 PM CDT
Happy Birthday to you!
Happy Birthday to you!
Happy Birthday dear Caleb!
Happy Birthday to you!
And Many More!!!!!!!!!!!!!!!!!!

Well, where do we begin? Last week at this time we were frantically trying to plan Caleb's Birthday party and now we are glad to say that we can finally relax. The Party turned out great and we hope that everyone enjoyed themselves. God answered our prayers for so many things. Our most important prayer was that Caleb was home for his birthday. Last year we had to spend it at the hotel. You cannot imagine the feeling of normalcy for us at this moment. As I look at Caleb right now and think back at his life and what all he has had to go through, it is just an absolute miracle to see him right now in his new surf shirt and khaki shorts playing with all his new toys that his just adores. We are also thankful for Caleb's donor family to have given Caleb a second chance at life. As we sent up balloons to heaven for donor Kaleb, our hearts filled with emotion. Hoping one day to meet the family that made Caleb's life better. We were also thankful for the beautiful weather, the amazing help from family and friends, Grandmaw and Grandpaw for letting us have the party at their house, our friends Eric and Amanda for letting us borrow the snow cone and popcorn machines from their Aunt and mostly that all of our family and friends were able to come celebrate this amazing time in Caleb's life as well as ours. God is awesome to have granted us all these great memories. THANKYOU GOD! Please pray for Jared's dad's side of the family for Caleb's great Grandmother Vi passed away Monday morning. We will be heading up to Teague, Tx tomorrow for the funeral and coming back Thursday night. Saturday we have a family reunion to attend and Jared's birthday is that same day. Then hopefully Mother's day will be pretty relaxed. We did have labs this morning so we will see later what those show. Love to all.

Monday, April 19, 2004 10:20 AM CDT
New Pictures!!!Things here have been going great! Caleb has been so happy now that he can goof around with his cousins. We went to Grandmaw's house last night for dinner and Caleb played pretty hard with his cousins. Thank you Grandmaw for having us over. Nothing else has been going on here, just trying to get ready for Caleb's 2nd birthday party. We have labs tomorrow, so hopefully his liver numbers are still good. Caleb is managing quite well without being on fluid, so if his liver numbers continue to stay down, then in a month we are hoping to pull his central line. Just in time for summer and swimming in the pool. Well hope this journal entry finds all of you doing well. Thank you for everything you all have done for our family, for we are just starting to feel normal. Whatever normal may be. Have a great week and God Bless!

Monday, April 12, 2004 10:14 PM CDT
Hello,
Caleb had a great Easter! We spent the day at his Grandmaw and Grandpaw's house and had a yummy meal! Caleb finally was able to follow his cousin's around for the first time. His cousin Cullen loves him so much, the minute we got over there he ran up to Caleb and was so excited to see him. He was bringing Caleb a bunch of his toys to play with. So sweet! Caleb was so pooped, that he took a nap in the middle of all the kids wrestling in the den. Funny! After that we had dinner with his gran and ate more yummy food. Other than that, he had labs done today and they all look pretty good. His liver numbers have went up a little bit, but are still in normal range. His anirejection drug level is low, so we may have to go up on the dose. We are trying to plan his 2nd birthday party. We had fun at the party store today, picking out decorations for a circus theme. Well that's all for now. Take care and thank you for caring!

Thursday, April 8, 2004 2:28 PM CDT
Praise God we are breaking out of the hospital as I type. All numbers good. Still feels like crud for the most part. Asking for urgent prayers for our friend Olivia. She is back in the NICU in Pittsburgh with bleeding issues. This puts her top of the list for transplant so pray that she gets a donor and please do not forget that donors come the loss of a loved one. We love you O, stay strong.

Tuesday April 6, 2004 @11:00 P.M
Well we are still here in Texas Children’s and Caleb has only had Tylenol 2 times today and he seems like he is feeling much better. The doctors stopped his antibiotics, because they were not doing anything anyways. They think that this is just a viral infection and that it will pass as soon as we back off of his anti rejection drug. He is standing up in his crib right now playing and eating a rice crispy treat. His poor nose is so stuffy he can hardly take a bite big enough to enjoy. The docs feel that we may be able to escape here tomorrow and just come to clinic on Friday to get labs checked. We hope this is soon, because I don’t know if we can stand all the people here that give you no privacy. Just to let some of you know, hospital life sucks. Today we had nurses, doctors, residents, speech therapist, occupational therapist, nurses aides, cafeteria people, a library lady, volunteers and oh yeah we can’t forget the lovely cleaning people come barging into our room. Half of the time Caleb was sleeping and they were talking all loud. Rude! No wonder why Caleb ignores people around him a lot. Thanks to all of your prayers, his liver numbers are 30 and 40 which are PERFECT! We have family coming in tomorrow for a few days, so I hope they will be able to meet Caleb for the first time outside the hospital. We will update tomorrow to let you all know if we are getting out of here, but until then take care and please keep you fingers crossed for us.

As of today we are not going home yet for some strange reason, Caleb’s H&H (blood level) is dropping. We do not know why, because he is not bleeding from anywhere. His stools look fine, but they are testing positive for blood, by stupid test that they do. Caleb's stool probably always tests positive for blood, because he does have ulcers and they probably just get irritated once in awhile. At 2 am we are going to repeat some lab work to check on his h & h, hopefully if it is fine, then we are out of here tomorrow for sure. Caleb is doing okay otherwise, just has the bad cough Please Pray for our transplant friend Olivia, for she is in the ICU right now waiting on another transplant. Thank you Grand maw for babysitting Caleb while I went out to eat with family, and Daddy went to the Astros game. We really appreciate everything that you do.

Monday, March 29, 2004 8:44 AM CST
Well all fun must come to an end! We are about to leave to take Caleb to Texas Children's Hospital! Last night he started acting like he didn't feel good! We took his temp. and it was 100.2. He had been crying and all upset because he hates getting his temp taken, so we thought that might be why his he was hot. Well we decided to give him tylenol anyways and he slept most of the night. This morning he is still acting like he doesn't feel good and still has a low grade temp. So we are on our way. Could be a line infection, so we need to get labs and cultures done. We will update as soon as we are able to. Please keep us in your prayers. We want to be home for Easter!

Thursday, March 25, 2004 2:51 PM CST
I am off to pick up our rental car but Enterprise doesn't have any more cars that I reserved so the guy tells me he will upgrade us to an SUV, a $200 upgrade. Labs came down a bit but still a little up, however Caleb is still hanging on to his cough some. Labs again on Monday then home if all is well. Pizza party was nice but Caleb kept trying to sneak off down the hall and on the elevator. Looking forward to going to Logan's but not looking forward to packing. We can't wait to see how Caleb reacts with Logan now that they can both walk. Ok i need to go pick the car up so we will update tomorrow before we leave for Ohio. Oh yeah, there are couple new pics.

Tuesday, March 23, 2004 8:41 PM CST
It's finally starting to warm up here but I can still forcast a inch of snow at my feet.... when I brush my hair. The weather is sooo dry and my skin is taking a beating. It's amazing how Caleb is getting around, now he let's go with no destination in mind and gets to where he wants to go without falling. (for the most part) Brandon is over here and we are about to spend the rest of the night playing on his playstation. Tomorrow a bunch of transplant families are getting together and ordering pizza for lunch in the lobby so that should be good times. Caleb is so funny, his favorite thing to carry around this week is a baby bottle of shampoo and a bottle of cream for his bum. He just walked into the bathroom, opened up the bottom drawer got those two things out then walked over to the window and set them standing up on the window seal. Smart boy! We have clinic and labs on Thursday, hope all is well. Have a great week!

Monday, March 22, 2004 12:40 AM CST
Korri drew Caleb's blood for the first time today. We had to drop it off early so the results would be there by clinic time. Because we had so much time before clinic we went and had breakfast with Brande and Brandon. Brandon had a small bowel transplant 8 years ago and i think they put a motor in his mouth while they were at it. (haha just kidding Brandon) He's not afraid to say whats on his mind. Brande is the founder of www.giftsfromheaven.org Check it out... Caleb is on there too. Our little friend Meagan and her parents Juan and Beth are here also for her stoma closure. She looks really great and i would have never recognized her from only 4 and half months ago. Needless to say, it's has been a breathe of fresh air being able to talk to somebody else besides each other. Labs were ok today, not much change. Liver #'s still a little up but the cough isn't completey gone yet. We have clinic again on Thursday. And for all your prayers....

Sunday, March 21, 2004 10:57 AM CST
Caleb is on his way to kick this cough!!!! Right now he is finishing off a whole Eggo and three french toast sticks. This is probably the most he has ever eaten except maybe his pudding. Not a whole lot going on here. Caleb is getting better walking everyday. He would spend all day walking up and down the hotel hall if you let him. It's snowing outside and Caleb just walked over to the window and is now just starring out it. Well we have clinic and labs tomorrow so pray all goes well and we will update with all the results tomorrow.

Friday, March 19, 2004 6:08 PM CST
We are back at the hotel now and Caleb is all over the place and in to everything and we couldn't be happier about it. Korri went shopping with some friends so Caleb and I went downstairs to the lobby and I turned him loose. He gets all excited when he lets go and targets his next leaning post. It's been awhile but Caleb shared some laughs with his angels during his lobby getaway. That just puts a smile on my face. Caleb's 2nd cousing Scott called me today and told me that he had seen a shooting star last night and made a personal wish. Then he thought about it and decided to add Caleb to his wish but before he finished another star shot across the sky. Guess God thought Caleb deserved his own star. Now for the medical news. There is no medical news! Isn't that great?!?! His cough is still here but he only has a couple attacks a day usually resulting from a crying fit because he has to lay down and have his diaper changed. He thinks he can do what ever he wants to do.... and for the most part its true. haha We have some more friends coming up tomorrow so we shouldn't be too bored here. Keep the prayers coming because God is answering. We really need to kick this cough so Caleb can play with his buddy Logan next weekend.

Thursday, March 18, 2004 3:56 PM CST
We are awaiting his magnesium test to come back so we can bust out of here. His cough is a little progressed but we started an antibiotic to make sure it doesn't worsen. Calebs liver numbers are a little up but that is expected when you get a little bug. We have clinic on Monday so we might know a little more about coming home. Our friends from Ohio (Logan's family) are planning on visiting next weekend if Caleb gets rid of this cough (yes i know i misspelled cough yesterday), so we will be here til then for sure. Oh yeah, Logan is doing great. His numbers were up due to his bug and required no biopsy. Way to go Logan!!! I'm sure we will have an update tomorrow about how Caleb banged his head at the hotel. He forgets that he hasn't practiced walking alone this past week. Thank you again and again for all the prayers. God has blessed!

Wednesday, March 17, 2004 1:17 PM CST
Happy St. Patricks Day!!! Caleb got to go out and play in the snow this morning. He was having a blast until he fell down in it. Caleb has had two good, non diahrea poops today so far, however he has started caughing this morning so lets all switch our prayers from less pooping to no caughing. His liver numbers are still coming down, both numbers are under 100 now!!!! If all goes well we will be at the hotel tomorrow.

Tuesday, March 16, 2004 6:25 PM CST
Scope looked good and better yet........ NO REJECTION!!! It showed signs of maybe an allergy so we will have a panel of blood work done. He had one before and it showed nothing. Liver numbers came down a hair since yesterday but we are happy with every little strand. We are going to push to get back to the hotel tomorrow. We need not ask for prayer because a blind man could see that no one has forgotten to ask the Lord to bless Caleb. We thank you beyond belief!! More good news to come.

Monday, March 15, 2004 8:43 PM CST
Today we decided to scope Caleb in the morning. Now that Caleb is closed he must be put under and scoped through his bum. With this scope we will have a better understanding of why he is dumping, whethere it is rejection, irritation, etc. Caleb is like a new boy tonight, he has been laughing and playing ever since he and I painted mommy a picture while she was at the hotel. His liver numbers are actually lower today than they have been in months. Praise God for that!!! We pray that they are even lower tomorrow. We are suppose to get a couple inches of snow tonight so we hope to take Caleb out in the morning for some pictures. P.S. Maybe we should all pray for less poop now.

Sunday, March 14, 2004 11:10 AM CST
Well all the days seem to be running together here, but we just have to keep reminding ourselves that God has a plan for Caleb and he will get us through this. The weekend is pretty boring, not allot of traffic through the unit. This is nice in a way because we were able to get Caleb out in a wagon and go to the cafeteria. I wish I could post new pictures of Caleb, but this computer is not compatible with my camera. Anyways, not much has changed. His output is still up as well as his liver numbers. The doctors just want to watch him for awhile before we come home to Texas. When ever that may be. Caleb's white blood count has been low, so he has had to get two shots in order to bring the count up. He is pretty weak and tired right now because all his food just seems to go through him. We are starting to give him tube feeds again to see if that will help his output. Nothing like starting from scratch, but he needs food in his system. Please keep all the prayers coming for we definitely need them.

Thursday, March 11, 2004 3:26 PM CST
Well all good things must come to an end. Yesterday around lunch time Caleb began to have diarhea. We thought we could keep him hydrated with pedialyte but that only seemed to make him go more. By night time his eyes had black circles and looked like they started sinking in so we called our transplant coordinator and told her we are going to the emergency room (11:00pm). They pumped him up with fluids. Even though by this time it was 2am we could tell he felt better. We finally made it back up to the floor around 4am. We just received news that his stool cultures tested negative for the roto virus which is a little scary even though we don't want him to have it because that leaves the chance of rejection. His liver is already in rejection and we don't need his bowel also. Thank you all for your prayers and please keep them coming!!!

Tuesday, March 9, 2004 5:51 PM CST
Well we got the results back from the biopsy and it showed mild to modedrate rejection so we upped his fk and hope that and the new med will take care of it. We will get another biopsy in a week or two to check on it's condition. We aren't sure if we are going to wait here or net yet. On a brighter note, we are back at the hotel and Caleb is thrilled to get out of that crib. It's probably going to take him a day or two to get brave enough to let go and walk all by himself again. Korri just walked in with grocerys so I need to go through them now and let her know everything that we didn't need. Please continue to pray because Caleb's liver needs it.

Monday, March 8, 2004 1:41 PM CST
Caleb's biopsy went well, we should get the results back tomorrow. Dr. Reyes doesn't feel too concerned about it. We get discharged in the morning. We are back to total normal feeds. Other than that theres not much else happening. Oh yeah, it's snowing. Go figure, it was 70 a few days ago. And you thought Texas weather was tough.

Sunday, March 7, 2004 12:08 AM CST
Sorry no update yesterday..... but thats a good thing. I'm starting to think the poo bag wasn't so bad. Yeah Right! I'm just not used to all the grunting and squeeshy noises. If you know me i always make the sound "ugh burrr" when something kinda grosses me out. Well i let one of those out when Caleb let one of his out and he said "ugh burrr" right after me. Sooo funny. We get off fluids today and get back on "normal" feeds again. Oh yeah, everyone says Caleb may have set a new record for quickest poop! That's my boy! We also started a new med that i can't think of now. It's an older weaker immunosuppresent just to see if this little extra agrees with his liver. If no change i'm sure we will discontinue it. Liver biopsy still scheduled for tomorrow so pray all goes well with that. We are taking the bandage off his belly today. Not sure where grandmaw got only 4 staples from but it's more like 10. Just wouldn't be normal for grandmaw to get all the numbers right in her update. haha That's for you mom. :P Well Korri is back from cleaning up and i have to go shave this grizzly adams. Don't forget about Logan too, if his numbers are still up he gets a biopsy tomorrow also.

Friday, March 5, 2004 11:42 AM CST
God must have thought we were all crazy praying for poop, but boy did he ever answer! He just about overflowed his diaper this morning and did his second #2 while i was going for lunch. Caleb's LFT's (liver function test) are a little more elavated, but doc's say that could be from the anesthia so we'll pray that that is it.(does it make sense to put 2 thats next to each other... always wondered)Korri and I just read it aloud 5 times and couldn't come up with an answer. haha They are thinking about a liver biopsy on Monday so when we do go home we can rule out rejection for these stubborn numbers. I think Caleb is feeling the effects of the surgery a little more today but he is still in good spirits. Caleb's good friend Logan's LFT's are up too so add him in your prayers for Caleb please. Thank you. We love you all!!!!!

Thursday, March 4, 2004 4:16 PM CST
The surgery went smoothly. NO MORE POO POO BAG!!!!!! Dr. Reyes was very pleased. He thought he was in the wrong operating room when he walked in and saw Caleb on the bed because he said he has gotten so huge. That was the first time he saw him since October. Caleb was trying to sit up already in the recovery room. I'm sure he will think differntly tomorrow when he has less pain med and is much more sore. Now we wait for him to poop. They said 2 to 4 days but maybe sooner. Just when you thought you would never have to pray for poop again. haha He and his mom are resting now while i play on the computer. We thank you all for the many prayers. We will keep you all posted. (now you all can sit on the edge of your seats for the first sign of poop) :D

Wednesday, March 3, 2004 6:09 PM CST
Hello,
Well we got admitted today at noon. Caleb is doing well, but doesn't quite understand why he has to stay in his bed. They have him on a clear fluid called politely and it is suppose to flush out his system. If his output is not clear by 9:00pm tonight then he has to have an enema. Let’s just pray that he is. I took him on a walk around our room and he kept trying to go out the door, but we don't want him to be exposed to anything at all. We are warned by many that the Rota virus is going around all on this floor. It is like a stomach bug (severe diarrhea). The surgery should take place sometime in the afternoon. He had labs drawn today and his liver levels are still up. A normal level is around 40 and he is in the upper 100's. The doc's do not want to do a liver biopsy, so we don't know what will happen with that. We will update tomorrow after the sugary. That you everyone who has been praying for us, we love you all. Take care.

Monday March 1, 2004 @ 3:00pm
We had a scope and it looked good, but we won't get the biopies back until tomorrow.

Well we finally made it to Pittsburgh and are staying at the Residence Inn again. It kind of feels like we never left because, our room is set up like our last one so it feels weird. Caleb seemed excited when we got to the hotel; he immediately started playing with his toys. He is getting allot better at taking more steps each day. The poor boy was playing with his ball and was rolling on it and slipped off and hit his head on the box spring of the bed. He has a big knot and it is bruised. Figures!!!! We are looking forward to seeing everyone that we have missed here. Anyways, tomorrow we have to be at the hospital at 8:00am for a scope. Caleb is already asleep and I am exhausted. Please pray that the scope looks good, so we can go ahead with the surgery. Thanks again for all your prayers!

Our address here is: Residence Inn
3896 Bigelow Blvd.
Pittsburgh, PA 15213
Room 213

Friday, February 27, 2004 9:57 AM CST
Well God has done it again. He has heard all our prayers and our flight has been scheduled for Sunday the 29th. Thankfully Jared and I both are able to fly with Caleb. I had to go through allot of phone calls to get this done, but it all paid off in the end. The thing is that Caleb is in a health plan through Medicaid, and they had to get a medical approval for the surgery, before we could go. Sending us there was no big deal; it was just making sure that the surgery was going to be paid for. It was a big mess, but I think I handled it well. Anyways Caleb is doing well, just watching Blues Clues and laughing. I probably will not update before we leave, but I will let you know when we arrive in Pitt. Take Care!

Wednesday February 25, 2003 @7:30p.m.
Thank you Hello everyone, Caleb had a great weekend. Thank you cousins Nicholas and Jacqueline for inviting us to your 4th and 1st birthday parties. Caleb had so much fun. He got to eat cake and ice cream and go down a big bouncy slide. Even mommy, daddy and Grandmaw went down it a time or two. Caleb also started taking steps all by himself over the weekend. He can walk 3 to 5 steps by himself. It is so cute to watch him go. His physical therapist is great with him and I can already see a difference. She brought him a shopping cart to walk with and he is all over the place with that thing. Flight arrangements are being made today for our trip to Pitt. We are not sure yet if daddy will get a ticket with us, but hopefully he can come on another flight. Caleb is doing so good, I just wanted to ask everyone if you all would please pray that this surgery will not hold him back much from all the catching up he has been doing and also he has been off of iv fluids now for over a month and hopefully after the sugery he can get his central line out. Thank you everyone for your continued prayers, by watching Caleb, it is clear that God is listening! Thank you!

Wednesday February 19, 2004 @ 11:50p.m.
Caleb had labs drawn today and they look pretty good. His liver levels still are elevated, but they seem to be staying in the same place for weeks now. The doctors do not seem to concerened. We are still planning on leaving for Pitt. on January 29th for Caleb's stoma closure. We are nervous, but anxious to get this over with. Overall he has had a good week. We went to a really big park yesterday with some friends and Caleb had fun feeding the ducks. Well, I will update later. Please pray for our friend Cindy "Makenzie's mom" for she had surgery a couple of days ago. And also our friend Hanna, who just recieved her gift of Life. We love and miss you guys. Bye for now.

Monday Feburary 9, 2004 @ 2:15p.m.
Hello,
Caleb has been doing great. Thank you everyone, who was there with us celebrating his one-year transplant anniversary. We had fun spending time with all of you. Caleb had physical therapy last week and she was very impressed at all that he is doing. She is pretty confident that he will be walking by his 2nd birthday in May. As long as he can stay healthy and out of the hospital. I am still waiting on a date for Caleb's closure surgery in March. We are hoping for the first week, but who knows what they have open. The dietician came today to evaluate Caleb and she is going to get the Occupational Therapist to start working with him. She weighed him and his is 28 pounds, which according to the growth charts, he is above normal for his age. Everything else was 95 percent on target. We have labs on Wednesday so I will update then. Thanks again for caring.

Wednesday January 27, 2004 @11:00p.m.

New Pictures!!!
Hello, Well surprise, surprise one of Caleb's liver levels went up and the other went down. The numbers aren't too bad, but his Prograf(anti-rejection med) is way to low. Even after we went up on the dose. I think it is just because he is eating a lot more and his absorbtion is changeing. We went out to eat tonight and Caleb was such a mess. We do not have labs till Monday. Caleb has his first dental appt. on Monday as well. Take care and once again THANK YOU for CARING!!

Thursday, January 8, 2004 4:38 PM CST
Hello all,
Well as most of you all know, Caleb is in Texas Children's hospital. He got admitted on Monday with blood from his ostomy. Thankfully the bleeding has stopped. They still are not feeding him though and want to wait until tomorrow. He has to have at least 24 to 48 hours of no bleeding until they feed him. He still wants to play and stand up and try to get out of bed, but he is still hooked up to iv's so he can't really go anywhere. The doctors did a scope yesterday and said that everything looked great. The olcers that they thought were bleeding, actually looked good, so there may be more olcers deeper in the intestines. They took biopsy to rule out regection. We will get the results today. This is a pretty short entry, compaired to everything that has happend this week, but I am in the library and I have to get back down to Caleb's room. I will update later. Please contiune to pray for us and thank you all for caring.

Monday December 22, 2003 @12:05a.m.
Well so far our new year has been okay. Caleb is still coughing and just acts like he doesn't feel that great. He has been sleeping more, but I think he just wants to escape his yucky cough. All the cultures that we took on Wednesday, all came back negative. Thank God! So I guess he just has a virus. I will be calling the doctor tomorrow though because Caleb's output in his ostomy bag is very dark and that could mean old blood. It may be that the low dose of steroids is finally taking a toll on his ulcers. Please pray that this dark output stops. We will be going to clinic on Wednesday for labs and to see the Doctor. We have not seen him in over a month and it has been great. We actually feel a little normal. I will be contacting our coordinator in Pitt. this week to try to set a date for Caleb's closer surgery. Hopefully the first week of Feb. but after the 4th, because that is Caleb's one-year transplant date and we want to have a celebration or something. Well we hope that you all have a wonderful 2004. I will update soon.

Thursday, December 25, 2003
Merry Christmas! As the night comes to an end, we are happy but sad to see it go. This time last year Caleb was in the hospital and we had to make the best out of Christmas with him in a nursery filled with crying babies, nurses and doctors. We are so very thankful that this year we are home to spend this special day with him and our family. Last night we spent Christmas eve at Caleb's Grandma and Grandpa's house and all the kids were running around with so much excitment, Caleb was trying to keep up with them. We posted some new pictures. We ask everyone to please say a prayer for Caleb's donor and his family, for holidays must be very hard for them. Happy Holiday's and Goodnight!

Monday, December 15, 2003 3:15 PM CST
Well we had labs today and Caleb's liver levels went up just a little bit. He is coughing a lot and through the night his nose is stuffy, so he may be coming down with a cold, which could make you levels elevate. His (Prograf) antirejection drug level was low at 9.5 and they want him around 12. So we are changing the dose. Having a low level can make you go into rejection and that could be the cause of why his liver levels are going up. Other than that, Dr. Reyes just said leave him alone and get labs next week. So if everything goes as planned then we are off to Caleb's Grandpaw's house in the country this weekend to celebrate Christmas with them. Please continue to pray and thank you for caring.

Thursday, December ,11 2003
Good morning,
We are happy to announce that Caleb liver counts are going down. They are not normal, but at least they are going in the right direction. Thank you everyone who is praying, for it is truely helping. The Doc's here do not want to make any changes, but tomorrow I will see if Pitt. wants to doing anything. He is a happy boy and he helped decorate his grandma's (Donna) Christmas tree last night. He had so much fun playing and laughing with his cousin Cullen. Thank you all again for praying. We will update later!

Saturday, December 6, 2003 10:15 AM CST
Hello, well we had clinic yesterday and Caleb's liver levels are on the higher side. Last week they were going down and this week they have almost doubled. He could have a little bug, but he hasn't had a fever or a runny nose or anything. Still waiting to here what Pittsburgh wants to do. We hope to hear from them soon, because they have not been good about getting back to us lately. I am not quite sure what they will say, probably a liver biobsy or go up on the steriods. But we are scared about that because if we go up on the steriods, then he could bleed AGAIN. Other than that he is a happy boy this morning. He is just bouncing in his bouncer and watching the wiggles. Anyways please pray that these levels go down on Monday. Thankyou. Take care!

Monday, December 1, 2003 10:29 PM CST
Hello,
Well today has been another good day! Caleb is eating a lot more and started waiving bye bye! We are not 100he waiving bye thing, but last night was his Aunt Kristin's birthday and when we all left the restaurant and were saying bye, we looked at Caleb and he was waiving his hand up and down. We were all amazed and we kept saying it, just to see if it was true. Well it was. Thank you God! We all just get so excited when we see Caleb do something new. Tonight we went to a mexican restaurant and Caleb ate the entire time. He had rice and beans, a flouta, cheetos, and drank some of my ice tea. He also ate some dip and dots ice cream at the mall. We were so excited, but we were trying not to make it a big deal. We did not want to distract him. Well our week should hopefully be pretty uneventful. We do not have labs or clinic until Friday. Well we hope you all have a good week. Take care!

Thursday, November 27, 2003 4:30 PM CST
Happy Thanksgiving everyone,
We just got home from Caleb's Aunts house and he had so mucn fun seeing and meeting his FAMILY. There are many, many things that we have to be thankful for today and just some of them are that: Caleb was able to share this wonderful day with all of us, a family decided to give Caleb a second chance at life, and all the love, support and prayers that you all have given us. We can not tell you all how much that means to us. Your prayers are what has kept us strong and gotten us through this hard time. Caleb is growing and getting better and better everyday because of one word GOD! Thank you everyone and we hope your Thanksgiving was as good as ours. Take care.
Love
Jared, Korri and Caleb

Monday, November 24, 2003 2:08 PM CST
Well we finally posted some new pictures up of Caleb, so don't forget to check those out. Our weekend was pretty boring, but fun for us because we are still HOME. We got Caleb's Christmas pictures done yesterday and we are not happy how they turned out. I may get them redone. We had to wait 2 hours and when we got there Caleb was in a good mood and at the end he wasn't. Then the machine with all the backgroundsalmost fell on the family of 15 before us so that took up one of those hours. It was horriable. Well we still have not heard from Pitt on Caleb's labs so I guess everything is okay. We are going to Caleb's great Aunt Janet's house for Thanksgiving, so that will be fun. Well if I don't have time to post another update, I just want to say that we hope you all have a wonderful Thanksgiving. Bye for now and thank you for caring!

Thursday, November 20, 2003 1:31 PM CST
Hello everyone,
Today is going good, Caleb is taking a nap and therefore I am able to do things around the house. We went to clinic yesterday and Caleb's liver levels went up a little bit. We are still waiting on the word from Pitts. doctors on what to do. He does have a little bit of a cough, so that could be why they went up. Other then that, he is doing really well. We have been making plans for Thanksgiving and are getting excited about Christmas. Jared started back at school two nights a week, which is great that they let him pick up from where he left off. We hope that everyone is doing good and thank you all for caring.

Sunday, November 16, 2003 11:33 PM CST
Hello Everyone,
Well, our weekend that we prayed so hard for is now over. We are so thankful that we All were able to attend our friends Eric and Amanda's wedding. We will try to post pictures as soon as we can. Caleb looked so handsome in his little tuxedo. His is doing so great at home, it is amazing to see him change in so many ways. His is a wiggle worm that wants to start crawling, but hasn't figured out that he can go forward instead of backwards. We hope that all of you are doing good and we will update soon. Please continue to pray that nothing gets in the way of us spending the holidays at HOME with our family. Take Care!

Tuesday, November 11, 2003 11:53 PM CST
Hello All,
Just wanted to let everyone know that Caleb started sitting up from a laying position on Saturday. He is getting pretty fast at doing it too. He is all over the place now. Not completely crawling yet, but almost there. The poor boy feel today and hit his face on the legs of the iv pole. It seemed like it hurt, but he only whined for a minute and then was back to rolling and getting into everything. Strong boy! I have to watch him like a hawk. Well we go to clinic tomorrow and we pray that everything goes great. Caleb's Aunt Carrie babysat him on Sat. night while Jared and I went out with our friends. We had fun, but it was hard to leave him that long. We finally got Caleb's tux, but it is being altered for the wedding on Saturday. Well we will update later. Take Care and we hope you all are doing good. Bye!

Thursday, November 6, 2003 2:06 PM CST
Hello,
Caleb has been very happy since we have been at home. We celebrated my birthday on Sunday and our family just came over and we cooked steaks and had cake and ice cream. On Tuesday we all went to a surprise birthday party for Caleb's Aunt Janet. He got to meet some of his family that he has never met before and he got to see all of his cousins. He was having fun watching all the kids run around the house chasing balloons, he wanted to do what they were doing. Yesterday he had clinic and it went well. All his lab work looked good and Dr. Quiros does not want to see him for another 2 weeks. Then last night we went to a pediatric small bowel transplant conference and our transplant doctor from Pittsburgh, Dr. Reyes was the guest speaker. It was at a really nice resturant in the Med center. He talked a little bit about Caleb and at the end everybody clapped for him. He got really embarrased and hurry and lied his head on my shoulder. It was exciting to see Dr. Reyes here in Houston. Our GI Dr. here, was at the dinner too and it was good, because the two doctors were able to finally meet. We are all going to get our flu shots today and Caleb gets to get fitted for a tux for his Uncle Eric's wedding. Well we hope you all are doing good and we will update in a few days. Take Care! Korri

Friday, October 31, 2003 11:43 PM CST
Hello,
We just wanted to let everyone know that we are HOME!!!! We arrived today at about 2:30p.m. Caleb's grandmaw (Donna) picked us up dressed like an old lady with signs taped to her front and back that said (Caleb I am your Grandmaw). It was so funny. Caleb went trick or treating tonight with his cousins, Matthew, Emily, and Micheal. We had fun, but Caleb feel asleep in the car on the way home. He was Cat in the Hat for Halloween. Anyways it will take us awhile to get used to being back, but we are looking forward to it. The Doctors in Pitt, said we don't have to see them till after the holidays, so please pray that nothing will get in the way of that plan. We just want to thank all of you who have prayed so hard for us, for it is truely helping. Thank you and Happy Halloween!

Wednesday, October 29, 2003 4:53 PM CST
GOOD NEWS! Thank you everyone for praying!!! We know you all did because right now we are waiting for a phone call with our flight arrangments. We called the doctor today for the results and.........NO REJECTION. We are soooo excited however Korri is scared to death. There are still a few things to worry about but we try not to think of them right now. If we have to come back, so what. No need sitting here waiting for something bad to happen.... we can do just fine at home. :-) The best part of all will be getting home and buying Caleb a suit for his Uncle Eric's wedding!

ANY FAMILY OR FRIENDS PLANNING TO VISIT US PLEASE GET YOUR FLU SHOT. CALEB WILL LOVE YOU FOR IT. {do not get the new flu "mist" because it contains live a live virus and he won't be seeing you for 3 weeks and he doesn't want to wait.}

Wednesday, October 29, 2003 2:18 PM CST
GOOD NEWS! Thank you everyone for praying!!! We know you all did because right now we are waiting for a phone call with our flight arrangments. We called the doctor today for the resultS and.........NO REJECTION. We are soooo excited however Korri is scared to death. There are are still a few things to worry about but we try not to think of them right now. If we have to come back, so what. No need sitting here waiting for something bad to happen.... we can do just fine at hOme. :-) The best part of all will be getting home and buying Caleb a suit for his Uncle Eric's wedding!

Tuesday, October 28, 2003 2:59 PM CST
Hello,
Yesterday we had clinic and Dr. Reyes said that if Caleb's scope looked better or the same then we can go home. Well we just had the scope and it "looked good," but it all depends on the biopsy. Please pray that the rejection has not gotten worse. Caleb is a happy boy today, we where up early so he is taking a nap right now. Our friend Makenzie went home so we are going to be bored. Caleb and her like eachother alot. Makenzie would always cry if she had to leave him. But we are happy that she got to go home. Well we will let you all know when we find out the results. Take care!

Sunday, October 26, 2003 2:18 PM CST
Hello everyone,
Today is going okay. The weather here is rainy and cold, so we decided to make it a bummy movie day. Caleb is watching Blue's Clues right now and he keeps laughing. Well tomorrow we have clinic so we will update then. Take care and thank you all for caring.

Friday, October 24, 2003 3:27 PM CDT
Hello,
Well today is going good. I went shopping with a friend and bought Caleb some cars that make noise and he just loves them, he has not put them down all day. The minute we got back to the hotel last night we put Caleb on the floor and he just started rolling everywhere. He is so much happier here. We hope everyone has a great weekend and thank you all for caring. We have clinic on Monday so we will update then.
Love US!

Thursday, October 23, 2003 11:31 AM CDT
Today the doctor told us we could go home (hotel) tomorrow but we were not having that. We are going home today. They wanted us to stay another day just for an OT (feeding)consult but we choose to take a visit to The Childrens Institute where they help Caleb before. He has started eating again. It's not much but one bite is better than what he was eating. Yesterday he had about 5 of his favorite cheese puffs and will eat ice chips all day! They are saying no matter what they will have us home for his Uncle Eric's wedding. We have another biopsy Monday to see if the rejection is gone. Pray that it is.

Wednesday, October 22, 2003 7:21 PM CDT
Well today was a good day. Caleb is feeling much better and he is eating good. He is back to eating his cheese puffs again. For breakfast, he ate some coco puffs. It was so cute. I think they are going to let us go to the hotel tomorrow. They are just keeping us here so they can balance out his fluids and get a good level on his antirejection drug. Well I am going to try and feed him dinner. We'll update later, take care.

Tuesday, October 21, 2003 12:34 AM CDT
Today we found out that the steroids that Caleb recieved did not have an effect. His biopsy still showed mild rejection. We have increased his anti-rejection drug which means he will be more immunosuppressed and more supceptable to getting sick. His feeds are slowly being increased everyday. This morning he had several bites of eggs and a few bites of a grill cheese and peaches for lunch. His is still in good spirits and just smiles at everyone who looks at him.

Monday, October 20, 2003 1:46 PM CDT
Hello,
Well today has been going good. We finally made it out of the ICU and are back up on the floor. Caleb had a scope today to see if the rejection is gone. Please pray that it is.We will get the biopsy results later today. He is much happier and almost back to his normal self. We restarted his feeds and he is eating ice like crazy. That is all for now, we will update later. Thank you all for signing the guestbook. Caleb says HI!

Saturday, October 18, 2003 6:34 PM CDT
Caleb was admitted to ICU 2:00 PM today. He showed signs of mild rejection of his bowels earlier in the week and he began IV steroids (which is heavy duty)on Friday. The steroids irritated his ulcers which has already caused him to bleed. He appears to be in pain. He is crying and he rarely cries. His blood counts are low and he will be receiving transfusions shortly. PLEASE, PLEASE have everyone praying for Caleb. Dr Reyes is hoping that the three doses of steroids will stop the rejection so hopefully, he will not have to continue on steroids. We are counting our blessings... he had a drink of water today! There is not a room available for us tonight so please pray that Caleb will sleep well and have a good night while we go to the hotel for a nap much later. Thank you all so much for your prayers!

Friday, October 17, 2003 3:12 PM CDT
Today we get a call from our transplant coordinator with some not so good news. Caleb is showing signs of mild rejection from his last biopsy. We are now back at the hospital and aren't sure how long this stay will be. Please pray that Caleb will turn things around and be able to make his Uncle Eric's wedding in November.

Thursday, October 16, 2003 1:57 PM CDT
Monday after clinic Caleb's output has nearly quadrupled in amount. We called the doctors to let them know and they recommended bringing him to the ER to have labs draw to make sure he isn't getting dehydrated and then go back to the hotel. Well they decided to admit him and have kept us here for two days now. His liver numbers are slightly elavated so we are now back on a low dose of steroids. We are waiting for papers to go home now and hopefully sometime next weeek we can go home home.

Monday, October 13, 2003 6:20 PM CDT
Hello,
Well today we went to clinic and the gastic scan and all his labs looked good. We have an appointment at the feeding institute on Wednesday, so I hope that they can give us some good pointers on how to get this silly boy to eat. We will update later. Take care and Caleb says HI!

Sunday, October 12, 2003 9:08 AM CDT
Hello Everyone,
Well this morning Caleb is watching the wiggles and is very intersted in them. Tomorrow we have clinic and hopefully we will find out the results from the gastric scan. We are also going to find out if we can bump the surgery back some, or if we can go home and come back after the holidays. We will keep you all updated! Have a great day and don't forget to sign Caleb's guestbook!

Thursday October 9, 2003 6:54 P.M.
Hello,
Well we found out good news, there is no sign of obstruction with the upper gi. Today I had a test called a gastric emptying scan. They just want to see how well my stomach empties. No word yet on that. Thank you all for checking my updates, but please be sure to sign my guestbook, so my mommy and daddy can read them to me.
Love
Caleb

Friday, October 3, 2003 11:04 AM CDT
HI,
I have been throwing up alot, so today I had an upper gi to see how things flow through my intestines. Everything seemed to go fine, but no word from the Dr. yet. We will update later. Love Caleb

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