History

Wednesday, January 19, 2005 7:30 PM CST

HAPPY NEW YEAR FROM THE MILES'
Hope this year finds you well. We are doing great! Degan is growing like a weed and getting more and more onry.
He is I guess what you'd call a "normal" 19 month old. He tests mommy and daddy to see what he can get a way with and he seems to not hear when he's told no. I said before transplant that I couldn't wait until these days, well now I'm reconsidering-HAHA. I wouldn't want him to be anything else than what he is. I got threatened by one of our friends about updating so I am going to really update.

This last year was exciting. We finally got to come home in Feb. and Degan got to meet most of his family for the first time. In March he and I came back to Duke for our 9 month studies and ended up staying for an entire month due to infections. We had great company though at the Ronald Mcdonald House because our friends Theresa, Grandma Kay, Aunt Nelli, and Daryn were there. Plus we also had Kelly and Cecelia. We had fun going out for icecream and those shortcut walks! We met some other friends that had been in contact via phone for the past several months. It was wonderful to meet and have lunch with you Lisa and Issac. Degan also got his lines taken out and a port placed.
In June and July we Partied!! We celebrated Degan's first birthday, getting off steroids, one year out from transplant on the 4th of July and Mommy and Daddy's birthdays later on in July.
In August we went back to Duke for our 1 year studies and spent time with our friends Ashleigh, Mckenzie, Michelle and Howard. Let me tell you something don't ever mess up a delivery for James and Howard.- Watch out if you do! We also had bad news come to us that our friend Daryn had went to be with Jesus. This was not only a shock to us but also a heartache. Daryn had transplanted a week after us. We met him before we went into the hospital when Degan was only a few days old.
In September we spent 4 days in the hospital here because Degan got some kind of flu bug and didn't want anything in his tummy. Mommy and Daddy got sick with it too. It was BAD!
We went to Kansas to see the Woerpel Clan in Nov. for Thanksgiving. Degan got to meet a couple more cousins. We ate too much of Aunt Donnie's mashed potatoe experiment.haha
We went to Grandpa Joe's house up in the mountains to go hunting in early December. It was cold and fun. We saw wild turkeys and had fun playing with his dogs Rummy and Copper. Then we had a wonderful Christmas here at home with Jey's family. Degan was into opening his packages and what was in them too. He thought it was funny when he ripped the paper open. He got a new toybox from Santa to hold all the new toys he got.
And finally we're to 2005!! I am recovering from gallbladder surgery that I had on the 5th of this month. Jey is still working and just signed up for a TIG welding class at the college. Degan is eating between 150 to 350 calories a day by mouth and still gets 31oz of formula through the tube a day. He's crawling all over the place. Getting into cabinets and playing with pots and pans instead of all those new toys. He is also pulling himself up and cruising along the couch and with his push walker thing. He has little ankle braces so that he doesn't roll his foot to the inside so much. He's talking quite a bit. His favorite word now is uh-oh. He throws things across the room just to say it. He loves books and dogs and anything else he is NOT suppose to be in. He gets some kind of therapy mon.-thursday and still gets his immune booster, IVIG, once a month. He will start his baby shots in late spring early summer. I am so thankful everyday for being able to spend my day with him. He is just the coolest little boy. I feel grateful to have had the chance to save his life and for all the wonderful families, nurses, doctors, and children we have met along the way. To all of you I say thank you and God Bless you.

Love,
Lori James and Degan

Thursday, September 30, 2004 5:40 PM CDT

I know I know it's been over a month since an update but we've been busy. I know always an excuse but I'm updating now. I'll let Degan talk for me.
In the beginning of this month we(Degan and Mommy) went to Kansas for a week to visit Grandpa Woerpel and some aunts and uncles. I got to meet my Aunt Bonnie for the first time. Man, does she take a lot of pictures! Everyone told me my Grandma Woerpel use to take lots of pictures too. I think Aunt Bonnie took 5 rolls of film and mostly of me. I was a little scared of my family there. I haven't been around them a whole lot so I wouldn't let my mommy get out of my sight. We had fun and I let my Grandpa hold me once while I was there. I got to play with my cousins Jenessa and Chelle too. They were funny.
Then we came home and my daddy really missed me and my mommy. He just wanted to hold me.
Last week I was really sick and I had to go to the hospital for 4 days. I got something called the flu. I didn't feel very good and I couldn't keep the milk in my tummy so I had to get iv fluids at the hospital. My doctor said I could go home the next day but my tummy still didn't want any food in it so I had to stay from Weds to Sat. I still don't feel 100etter but we're trying a different formula called neocate to help my insides heal a little bit. My doctor said my insides we're probably raw from all the diarreah and vomitting I did. This new formula is helping a little bit but I'm not sure its the cure yet. My mommy and daddy got sick too. I had it first and then my mommy and daddy. My daddy was sick longer than mommy. They were very worried about me because this is the first time I've been sick after Ms. Sue from NC said that my immune system was back. Its at 100ut now I have to build antibodies so I can fight off infections.
This week has been better. I now have speech therapy once a week instead of feeding twice a week. I'm eating a little bit with my mouth but since I've been sick I haven't really wanted too much to eat. My PT Lisa came out today and I yelled at her the whole time. I haven't seen her for almost a month so I was a little afraid of her again. I didn't feel like doing what she wanted me to do. My mommy said I threw a temper tantrum. I was a little onry today. I kept getting into things like our tape tower and my mommy would tell me NO and I would laugh and go right back to it. I knocked it over one time by kicking it. I thought it was funny, my mommy didn't. I guess its time they start to kid proof the house. I'm pretty smart though I might be able to fool the kid proofing!
I have started to get up on all fours and crawl backwards. I get mad when people try to make me go forward. I can also go from all fours to sitting all by myself. Its harder for me to go back to all fours. My one leg gets stuck under me but my mommy or daddy usually helps me out. I love to stand and walk back and forth between people, with help from mom and dad. I love to roll everywhere. I also like to scream. Its the best sound I think I've ever made. Mommy says it hurts her ears. Daddy says I scream like a girl, I don't know what that means but I think its really funny when they tell me to stop. I just scream louder and higher pitched.
Well my daddy is going to be home soon, I'm gonna watch mommy fix dinner.

Kisses and Hugs to everyone,

Degan and Mommy

Friday, August 13, 2004 0:57 AM CDT

Yes I'm finally updating. As many of you know we went back to Duke the week of Aug 1st. Degan had to go back for his 1 year post transplant studies(tests).
My little man is doing so well. All of his tests came back normal or better than last time. His Echo(looks at his heart) showed that the thickening from the steroids is gone. Its healed itself. His lungs test was normal like always. His EEG(looks at brain waves) was normal along with his Ver(looks at the impulses from his brain to his eyes) His nerve conduction was slightly better than in March. His MRI was normal, it did show that there was a small space between his brain and his skull which Dr. K and Sue said was normal for transplant kids. The only thing that hasn't really changed much is his BER(looks at impulses from brain to his ears) It still shows a hearing problem. Noone has said its bad or anything and the docs also said that he seems to hear fine so its nothing to worry about right now.
Also I can't beleive I'm announcing it here before I even tell James but he's asleep and will never know. Degan's enzyme level came back normal and and also he still has all donor cells!! We won't get our immune test results back for a few more weeks but they are guessing that his immune system should be back at 100% too. If this is the case then he will start his baby shots soon.
Dr. Kurtzberg and Sue was very pleased and surprised by how well Degan was doing. They were very surprised at his age and how far he is out that he could sit unsupported and could stand. They were impressed by how much he was talking and interacting with them while they were with us.
Dr. Escolar(developmental doc) was pleased and of course had things we should work on like tummy time and getting him off the pump feeds at night. I think our therapists are doing a great job with him here and that we'll probably just stick with thier plan of action.
We got to meet 3 other newborn transplant kids while we were there. Alyssa, Madison and Joshua are all very cute and are at different stages of their transplant. They all look so tiny now that Degan has grown so much. I think I told every one of their parents how small they looked. Jason who was another newborn transplant was there too. He is getting so big and so is his big brother Kyle. We met Jason a little bit before we left in Feb. He has changed so much since we saw him last. Kyle and I played on the computer in the fish tank(waiting room) one day while waiting to see the doc. We also got to see Ashleigh and her parents and sister while we were there. Ashleigh also has grown and is looking so different now that she has hair. She has had some bumps in the road the last month so her, her sister and her mommy is staying in Durham for a little while. We didn't get to meet Ryan who also was a Krabbe transplant child, and we saw Jhyvre(16 yrs old also transplant Krabbe)at clinic but we never really met them so we didn't talk to them.
We also got to go out to dinner with his girlfriend/primary nurse Amy while we were there too. She was surprised at how much he had changed. Degan was very interested in her and her friend Erika. Erika got a real good picture of Amy and him. He was definately being a little man in the picture.
As you can see by the pictures Degan has changed a little. He is jabbering away some days. He does say several words like dada(most the time) mama(some of the time), bye bye, I done, nanana for no, da for dog, and probably a few more we haven't figured out yet but those are easiest to figure out. He's rolling around everywhere. He's not crawling yet but he does get on all fours with help and then he'll rock like he's gonna shoot across the room any second. He can stand up with us holding on to his hands and stay up for a while until it becomes a game of standing up and falling down. He's started this biting thing here lately too. It hasn't been too much fun buthe doesn't do it to often.
See I don't update and then I have a long drawn out one. Anyway I did update.

Love to you all,
Lori

PS Jey and I are doing fine too if anyone wants to know.-haha

Tuesday, July 6, 2004 11:05 PM CDT

Well another month has gone by it's time to update again. We celebrated 1 year post transplant on the fourth of July. We had a BBQ here at the house with family and friends. Not as many people showed up as we expected so we will be eating potato salad and baked beans for the next month but I guess at least we'll have something to eat!-haha We missed the fireworks, Degan was exhausted as were we so we stayed home after dark and watched the fireworks in the neighborhood. It was such a great day to be celebrating our son's "new life" and independence from this horrible disease.
Degan is doing awesome. He is so cute. I really will get pictures up soon-I promise. He continues to get feeding therapy 2 times a week and is making some progress. We are half way there with him being fed only by bolus feeds. Bolus feedings are where he gets his milk through the tube by gravity 4-5 times aday and in larger amounts so he doesn't have to be hooked up to his feeding pump all the time. Right now we are at 5 feedings a day of 3 oz each feeding. Then he is on the pump from 9pm to around 5 or 6 am. Like I said we are almost there. He gets 30 oz. a day of milk and we are at 15 of those by bolus feeds. With him not being on the pump constantly he is starting to actually have a small appetite. He is eating pretty well by mouth but still not enough yet to really count toward his calories for the day. He is finally swallowing the food though instead of spitting it out so I have to remember small steps. Our therapist tells us to be patient. He also is getting physical therapy 1 time a week and occupational therapy 1 time a week. That's when they come out and make him move in ways he doesn't always like. We are working on the crawling position and also the standing position. He dislikes them both very much. Unfortunately mommy can't "save" him because I know he has to do it. Usually by the time he likes the position they've been working on for a few weeks its time to work on something else.
He is off steroids until we hear from Duke. YEAH!!! He had some labs drawn today to see if he can stay off. We are praying that the numbers are where they want them so he can stay off the steroids and his little muscles can get stronger. He's doing so good though. We could tell a difference in his strength when we were weaning them so I hope he can stay off and we see a big improvement in the next few weeks.
Nothing else is new. James is still working at Spendrup building mine fans and I'm still staying home with Degan and doing Pampered Chef.
Until next time.
hugs and kisses,

Lori, James, and Degan

Thursday, June 10, 2004 1:44 PM CDT

Degan had a great birthday on Tuesday. James took off for the day and we tried to spend the day together but we were too busy trying to get ready for the party that we really didn't get to spend too much time together at all.
We did have fun though. The night before his birthday we got his hair cut. I had attempted this a couple weeks ago but he freaked out when the guy got out the clippers. So we tried again and the lady cut it as short as she could with sissors. I was hesitant to get his hair cut but it did turn out very cute. First thing in the morning on his birthday, we went and got Degan's pictures taken for the first time professionally. They turned out so cute. I will put some on once I figure out how to scan them and get them on here. Also I will put some pictures of him at his birthday party. After pictures we came home and I started decorating his cake. He had a green star cake with a big # 1 on it. I always had a homemade cake when I was growing up so I have to do the same for my kids. Degan had therapy early in the afternoon and then took his nap so he would be ready for his party. James finished cleaning the house.
We had a small family birthday party. We decided we are going to have a big bash for his 1 year post transplant day on July 4th. Hopefully he's not as shy as he was at his birthday. There were about 12 people here and he just wasn't sure why. He just kept staring at his Grandpa Steve and his cousins Alex and Victoria. He was tired again before we got all his presents opened. We did the traditional let the baby attack the cake. He got frosting on his fingers and got the silliest face and flapped his hand around until it fell off. He did taste his cake and icecream. He wasn't too impressed with his homemade birthday cake but he did like the icecream a little bit. He made out like a bandit with all his presents which included a Tonka frontend loader, his very own remote control, and a big boy bike plus lots of bubbles and books which are his favorite. He also got a real nice bookcase to put all his new books on. He had a good time and was exhausted when it came time to go to bed.I will update pictures soon. He has changed alot again. He's getting so big even if the scale isn't showing it.
This birthday was so different than his sister's first. Both had the excitement but Megan's was just a little sad too because she didn't respond to her toys and she didn't get to attack her cake. It was strange for me to go shopping for Degan, actually it made me emotional. I remember buying for Megan thinking she'll never play with any of the things we buy her but with Degan I had to get that thought out of my head. He WILL play with this Tonka truck and he WILL play on this rocking trike. It was almost like even though Degan is "normal" I still had the thought that he wouldn't play with these things but he will and that is the greatest feeling that I could feel right now. It made me realize that even though we went through the transplant and he is doing great, I was still comparing him to his sister, when he is and never will be anything like her. If it wasn't for her he would of never had the chance to live a "normal" life. I miss her so but I also say thank you Megan and thank you God for giving us this with Degan.

PS Happy birthday Grandpa Woerpel

Saturday, June 5, 2004 1:01 AM CDT

Hey aren't you proud of me? I have updated what 2 times now since we've gotten home.
We have been busy this week trying to get plans made for Degan's 1st birthday coming up this next Tuesday. I'm so excited.
Degan amazes me everyday. The other day I was playing with him. I put his slipper on top of his head and then he'd shake his head no and it would fall off and he'd laugh. Well I did this like 3 or 4 times and then the last time it fell of HE reached for it and tried to put it on his head. It was the first time he's really initiated play. It was pretty cool. He thought it was really funny when Mommy put his slipper on her head. Also the same day I apparently had something with putting things on his head, because I took his pants and put them on his head and then showed him his reflection in the mirror- he laughed and laughed and then of course pulled them off and laughed some more. It was pretty funny too.
Medically speaking we are still doing labs every other week, this last week everything looked great still. He wieghed 16 lbs 5.75 oz, he's still not to the 5le yet but we're headed in the right direction. We are slowly introducing him to bolus feeds instead of continuios-YEAH!!He's getting weaned off his steroids, we should be off them by next month. Today was his last day of his antifungal antibiotic, diflucan-YEAH!! He stopped his septra last week-YEAH!! So now his only meds are predlisone(steroids), prilosec(for acid reflux) and a multivitamin. He does still have his monthly IVIG also through his port but that's it. I'm so excited to get off some meds. I really can't wait until he is completely off his steroids. He is gaining alot of strength since weaning him so I'm anxious to see when he is completly off.
He still is not extremely fond of being on his tummy but when he rolls over by himself we clap and make a big deal out of it so then its not as bad and he actually lifts his head and pushes up with his arms a little. He rolls back over to his back again but since we make it so fun when he's on his tummy he has started to roll again back onto his front. If we try and make him roll over -WATCH OUT he gets outragiously ticked. One of our therapists told us just let him do it on his own, even if its for a second and make a huge deal about it and maybe he will eventually like hanging out on his front just to get the cheering section going.
Well you all should be proud of me because I did update without a whole heck of a lot going on. I'll update after his birthday and get some new pics on here.

Love,
Lori, James and Degan

Monday, May 24, 2004 10:35 PM CDT

WOW! Can you believe I'm finally updating! You all thought I was bad before, its getting worse-ha-ha. Sorry no updates but just remember no news is good news. Since we got home, our computer took its last breath, our internet provider wasn't working and I've just been so damn busy I haven't gotten on here to update. We have gotten a new computer so hopefully I will be able to update more. I just can't see updating when not much is going on.
We finally returned home in the last part of April. He got rid of all his infections and in the mean time got a port put in. Degan is still doing well. He is finally 16 pounds! He's still working on eating a little but that's gonna be awhile. He has started to sit on his own for 3-4 minutes unassisted. He likes to play with his toys while doing this but sometimes he forgets he has to hold himself up. He is also waving bye bye(half the time anyways) and jabbering up a storm.
He has his first birthday to celebrate here in 15 days! Its been a long year but it has went so fast. We are so thankful to have our son here with us for this wonderful occasion. It definately will be a new experience for us on his birthday. He will be digging into his cake and opening his presents. Although we learned with Christmas that he is like his big sister when it comes to the end of the presents being opened. They both go to sleep once all the excitement is over. We are truely grateful to the family who donated thier baby's cord blood so we could have our beautiful, happy,and don't forget onry, little boy.
Medically Degan is doing really well. All his blood work is staying very stable and we are finally going down on steroids!! YEAH!! We are slowly- VERY slowly decreasing his dose and hopefully in a month we will be completely off of them. We are also only drawing labs every other week now so maybe those counts will have a chance to keep going up.
James still continues to work his butt off everday so I can stay home with Degan. Right now he is working 56 hours a week so he has been very tired in the evenings. He is such a dedicated husband and father. I am eternally thankful for such a wonderful man in my life. I am enjoying staying at home and watching all the things that so many parents take for granted. We always tell people they have no idea how important the little things really are when it comes to your child. Something as simple as a smile or a giggle to a funny sound means all the world to us. Ever since we had Megan and I had missed these things with her, my favorite thing to listen to has been children laughing. Its the little simple things that makes life worth so much more than what most make of it.

Love,

Lori,Jey and Degan

Wednesday, April 21, 2004 6:28 PM CDT

We're still at Duke. Since I last updated Degan got his port put in and then developed 2 different infections, C-diff and the Roda virus. The C- diff is from being on antibiotics for the staph infection he had around his old line site. The roda virus is just a virus he caught while here. Dr K said that its everywhere right now and he could of got it at the RMD house or even at clinic. He got severely dehydrated from having diarreah. He was on iv fluids up until yesterday. He is now over that and we are planning to come home on Saturday. Its been a long 1 week trip here(ha its turned into a month) We have gotten to see almost all our transplant friends while we've been here though. We are very excited to come home as well as James is about us getting home.

I will update later.

Love
Lori and Degan

Sunday, April 4, 2004 12:38 AM CDT

Finally an update!! Well Degan and I came to Duke on the 20th of March for his 9 month studies. They found that he had a staph infection around his central line site and in his lines. They ended up taking out his line and putting in a temporary line. This one is a big pain in the butt. The surgeon put in what's called a cook catheter and it right under Degan's collar bone. He sweats way too much and his dressing doesn't like to stay on so for right now he's getting his dressing changed about every day. On this Thursday April 8th he will be getting whats called a port put in. He will still be able to get his iv meds and labs drawn this way but there is a less risk for infection. We will change labs draws to every other week and he will still get his iv meds once a month.
Degan is doing great otherwise. He's been happy and playful. He's taken a while getting use to his mask again since at home we don't go anywhere where he has to wear it wxcept to the doctor every week. Here he has to wear it going thru the house and at clinic.
He is having a fit while I sit and type so I will update more later.

Love,
Lori and Degan

Monday, March 8, 2004 11:36 PM CST

Yes I am finally updating!! Degan is doing very well. He's finally over 13 pounds!! Actually last week he was 13lbs 11oz. We don't know yet about this week. His platelets continue to grow- up 166 last week, and his hemoglobin went down a little but nothing to concerning at 11 instead of 12.5.
We started feeding therapy a couple weeks ago and he is doing quite well with that also. James and I both got him to eat a couple teaspoons of food from a spoon on 2 separate occasions. Missy and Irene, his feeding therapists, think he'll be eating in no time. Still nothing from the bottle but they said they will probably bypass the bottle and begin on the sippe cup when they think he's ready.
He also started physical therapy last week. He didn't like that to well but he's slowly, very slowly getting use to being on his tummy again. Its going to take some time. I did get him to at least tolerate being on his tummy a couple days ago, he wouldn't lift up his head but he didn't freak out so we are making some progress. His therapist, Lisa, is sick this week so we will be completely responsible for doing all the hard work with him.
He had his iv meds today here at the house. He didn't have any problems with those and he's starting to trust a few of the "strangers" that come into our house every week.
His new game is fake coughing. Last week he started "coughing" and we got a little concerned until one evening we were sitting there and James or I cleared our throat and then he started "coughing" We played the little back and forth game for a while, I'd "cough" and then he'd smile and "cough". He's so stinkin onry.
We are getting ready to go back to Duke the week of the 22nd. James has decided to stay here and work so it'll be just Degan and I. I'm so excited to see everyone there. Although I don't think Degan's gonna make the goal I set for him. I was hoping we could surprise his favorite nurse/girlfriend by getting him to say Amy but he's not saying alot of anything lately. He's gotten a little more quiet. For a week or so I wasn't even hearing momma but he has started again this last weekend. Tonight he was just babbling on and on-kinda like his mother does sometimes.
With that I should go. I miss everyone at Duke and can't wait to see all of you soon!

Lori, James and Degan

Friday, February 20, 2004 9:46 PM CST

Hi All! Thought I better do my updating before I get in trouble with a few people. Degan is doing real well. His labs this week was hemoglobin at 12.5 and platelets at 137.
He hasn't gained any weight or grown but we figured he probably wouldn't in a week.
He got his button switched to a mickey today. His bard button just kept leaking just as bad as when we first got it. It was horrible. He's too handsey to have a bard. We'd wake up in the morning to him soaking wet because sometime during the night he pulled the tubing out and it ran all night all over him. The mickey button tubing locks in so we like it much better. His big sis Megan had a mickey.
Degan is still saying mama and dada. He got a couple balloons this last week and he started saying ba when he wanted to play with them. We are trying to get him to say dog or mucho(Sam,his dog we call him mucho) I guess we'll have to replace his pictures in his book to pictures of people at Duke so he can say Sue, Amy and Dr. K.-haha

Degan is getting use to us leaving his sight,much better than last week.I think he's finally realizing that this is home. He likes his dog Sam. Degan and I went and watched Dad throw the ball for Sam the other day and Degan thought it was so funny that Sam came running back with the ball in his mouth. Everytime Jey would throw the ball Degan would turn his head and watch Sam run after it and come back and then just laugh and kick his legs. Sam is getting use to the baby getting most of the attention he use to get. He is protective and curious though. When Degan cries, Sam comes running to see whats going on with him. I'm sure they will become very good friends in the future.
We are learning new ways of doing things here. They have showed us a different way of drawing labs but I still would much rather do it the way we learned at Duke. It frustrates me when I'm comfortable doing something(We HAVE been doing it for 8 months) and then someone tries to show us a "better" or "easier" way of doing them. Its easier for me to continue to do it the way I have been for 8 months. I guess people told us we wouldn't know how good we had it at Duke til we came home. We've found this out a few times already.
My first and last week of work will be this next one. I can't see risking my child getting sick because I'm too attached to my job. I love the kids I work with but I have to live by my priorities right now. My job is VERY supportive of this decision so it made it a little easier.
We will be pinching pennies for a while until we learn how to manage but I also see the possibility of getting a night job or working from home as an option.
Other than all of this nothing is really going on. We miss all our friends in NC and those we have met there that have come and gone. We can't wait to see all of them in March. So Amy, you better be taking the week of the 22nd off so you can spend time with your boyfriend.

Love,
Lori Jey and Degan

Tuesday, February 17, 2004 11:50 PM CST

Hi all!! We are doing great. Its nice to be home again. We've been cleaning and trying to regroup since our trip home. Degan had his first doctors appointment last week. He seemed to like Dr. Spoering. He just stared at him at first but then he smiled when the doc started to examine him. His platelets went up to 93 Yeah!!! He's getting closer to where he is suppose to be. His weight was 12lbs and 14.75 oz. We say he might just get to 13 yet before he's 9 months old.
He has had a busy week this last week. We got home on Sunday. Our new nurse came out on Mon., we saw Dr. Spoering on Weds. Mom and Dad tried to clean and unpack a little bit in between holding me and chasing after therapists. We still haven't started therapy but hopefully maybe before this week is up. We had Christmas on Valentines day with James family. Degan got to meet some of his other cousins and his aunts and uncles.
Degan is getting use to the bigger place. He's starting to realize that just because he can't see us doesn't mean we left him, and that when people go thru the white door here it means that they are gone not just going to the bathroom.
I was suppose to return to work today but I took another week off so I could try and get therapy set up and get the house together, which I'm still working on both. I'm going back next week. James went back yesterday at Spendrup, where he was working before we left. The evenings go so fast anymore. Before we know it its 11:00 and we should be in bed so we can start the next day all over again. Its amazing how busy you are when you get back to your own home.
We see the doc again tomorrow. I'll update again soon.

Love,
Lori, James and Degan

Wednesday, February 11, 2004 11:31 PM CST

Hello All!! Sorry its been so long but we were so busy packing and getting ready to go home that we just didn't have time to update. Now we are finally home!! We left on the 5th of Feb. It took us 4 days to get home. Degan was so good in the car. The first day we drove 12 hours. We stoppped every 4 and let him out of his car seat and he was ok with that. The rest of the trip was shorter days. We spent the night with Degan's uncle Scott on Friday night in KC. Then he got to meet the rest of Mommy's side of the family on Saturday. All except Grandpa Woerpel but he'll meet him later this month. We pulled into Grand Junction on Sunday evening about 7. It was so nice to be home-home. We miss all our friends we've made at Duke but we will see them all again soon.
Degan doesn't quite know what to think of his "new" house. He can't see mommy and daddy all the time and he's not sure he likes that. If he's in our room and we're gone in another for too long he starts crying his sad little cry and yells for "mama". His dog Sam (Mucho is what we actually call him most of the time) is very interesting to Degan. He just watches every time Mucho is close. Mucho isn't very interested in Degan, he sniffs at him every once and a great while but he's more excited that James and I are back.
We have started all of the care here already. Our nurse,Barb, is the same home health nurse we had with Megan so its really nice to be able to share Degan with her too. We are still working on therapy. Dr. K and Sue recommended that we have physical therapy 3x's and feeding therapy 2x's a week. We would really like to have the same therapists also as Megan had but I'm not sure that's going to happen due to insurance. We already have an relationship with them and they've been here for us through everything. I guess we will have to cross that bridge when we get there.
James and I will be going back to work next week. I'm not estatic about that but I am looking forward to seeing the kids I work with. I went to work today to see them but half of the class was gone. I love my school and the people I work with its just going to be really really hard to leave Degan. James' grandma will be watching Degan for us but it still is hard for both of us. Degan is leary of strangers as it is and he only really knows us. Everyone keeps saying he'll get use to it but I feel like he shouldn't have to yet. I feel like its really unfair have a child and then dump them off at someone elses house for them to raise them while your working. Right now we're checking into options. Degan has his first appointment with his new doctor tomorrow. He had labs drawn today so I'll let you know how that all goes.
I just want to take a minute to thank you all for your love and support through this whole transplant process. Some of you we knew before we went and other we met while in NC. Some of you were there the minute we found out that Degan had Krabbe and helped us get to where we needed to be to save his life. For that no words could thank you enough. We made some friends for life while we were there and it was really hard for us to leave even though we were coming home. We will keep all of the kids and their parents in our thoughts and prayers. We met some very special people and they have changed our lives forever.
Now that we're home I will try and update a little more often. I get such a hard time for not updating but hopefully now that we're home and we get settled a little bit, I'll be better.

Take care,

Lori, James and Degan

Friday, January 23, 2004 8:22 PM CST

We had our last 180 day studies today. Degan had his echo and his lung function test today. Lung function was great and we won't know his echo for a little while. I'm hoping on Tuesday. His platlets were down to 58 today. We were really hoping that maybe since he was off his gvh med that they would go up but its still nothing that will keep us here longer. Hopefully on Tuesday they will be on their way back up.
We have changed insurance through my job and we're having some issues with that. I just found out the doctor we want to follow Degan when we get home is not a preferred provider so I'm not real sure what that means. The doctors that are I refuse to have due to past experience.
Degan is doing well otherwise. We started physical therapy on Tuesday again. We will be seeing them 2 days a week until we go home. Sue is still looking into feeding therapy. It seems pointless to me since we are going home in 2 weeks. We will only see her once if we even do but Sue thought she might have some input for us. We are packing to go home still. We sent 10 boxes home last week and I think we're gonna have about that many again soon.
Nothing else going on just thought I'd update and let everyone know we're ok and that we are still here.
Love
Degan, Mommy and Daddy

Monday, January 19, 2004 9:23 PM CST

****NEW PICTURES ADDED JAN. 22****

Just a quick and exciting update. Degan has 2 teeth that have broke through. He's been a little more grouchy the last few days but over all doing well. He just wants to chew on everything.
We will have the rest of our 180 studies this week. As far as we know we're still looking at going home around the 1st of February. We are very excited about getting home, a little nervous and uncertain about things but still excited. We are trying to get therapies and other things set up at home before we leave so we won't have as much to do when we get home. I'm just hoping we get home in enough time for us to get settled a little before I have to go back to work which is on the 17th. Jey's plan to work with a friend trucking has fallen through so we're looking into our options of what to do with Degan. Jey's nana has offered to watch him but we feel that its unfair to have a child and then have someone else raise him for 40 hours a week. I would really love to stay home but I love my job and the school that I'm working at plus Degan is under my insurance. I guess we'll have to figure that out soon enough. We are not the first people to have to figure this out.
Our friend Ashleigh is going home to New Jersey this Friday. She also had Krabbe, had a transplant and is doing very well. We will miss her and her family- Mommy Michelle, Daddy Howard and big sis Mckenzie. I will especially miss the long shopping trips with her mommy and her crazy driving.-hahaha We wish them well and hope to see him when we are back in March.
Dylan is doing very well also. He is doing his 100 day studies this month and next. He has had a hard time but finally everything is going well for him and his family. They are so far away from home and I know they are anxious to get home to Holland.
Another krabbe kiddo, Daryn, who was transplanted about a week after us needs some extra prayers. He went home to Michigan in December and has been in and out of the hospital since. They are suppose to be back here at Duke in February also but I'm not sure now that he's in the hospital again. Please pray for him and his mommy Theresa. She is so strong and Daryn is such a fighter.

Other than that I'm not sure about any one else that we've met here. I finally got our laptop to work here at the house so this is the first time I'm using it. I'm going to check on everyone else after I get finished here. Take care and I hope to see everyone soon.

Love,
Lori,James and Degan

Thursday, January 15, 2004 6:31 PM CST

Ok I tried to update and somehow I erased my whole entry so once again I will try. Sorry its been so long the computers at the house are still not fixed. I'm updating because I'm babysitting Dylan.
As you might have guessed Degan is out of the hospital. He is doing well with his feeding tube. We've had to play around with the feeds a little but he's tolerating them now. He is now on continuious feeds over 20 hour period. We hope we can slowly increase his amount per hour so that he's not on for 20 hours a day but that will be something we work on even after getting home-home. He has taken a little by mouth but we're not pushing him too much yet. He also had whats called a full floppy wrap. We are letting it heal more first. This is where the doctors took part of his stomach and wrapped it around his esophagus so that his acid reflux wouldn't come up. It also stops him from throwing up. We are concerned about this wrap for later when he no longer has his feeding button and he actually needs to throw up from getting sick or something. I guess the docs are not so concerned with this. Dr K hopes he will only have it for 6-9 months. We are guessing more like a year.
Degan has started his 180 day post transplant studies. We have had our MRI which came back great. It shows there is no deterioration and normal amounts of myelin. Also we have had our Dr. Escolar appointment. She told us what we already knew. He needs physical and feeding therapies. He has lost some of his skills from all these surgeries. He doesn't tolerate his tummy too well anymore. I tried to put him on his tummy yesterday and he just was not having that. Once again we will have to start over with that. We will have to put him on his tummy for short amounts of time until he likes it again. Being on his tummy will also develop his back muscles so he will be able to sit up on his own.
Also on Tuesday, Dr K took Degan off his med for graft vs host. We thought maybe it was contributing to the gas issue since that was one of the side effects. She said we'd see how he does and if it helps he will no longer be on anything for gvh. Sue(our nurse practitioner) said that alot of times when a baby hasn't had any issues with gvh that they will start to wean them off around now so I guess we might just be finished with it. We will also be coming home with his central lines in instead of a port for now. Dr. K and we agreed that he really doesn't need to be put through another surgery. We hopefully will be headed home the first part of Feb. I'm a little scared to say anything because everytime I do we end up not coming home but hopefully this time it will be different.
Oh yeah his biopsy of his stomach he had done came back neg for gvh as you might of guessed from my prior The doc said that his esophagus was ate up a little from his reflux though. Hopefully this wrap will stop that. I think thats it for now. We will continue to have our studies this next week and maybe the week after. Hopefully our computers will be fixed at the house so I can keep everyone updated.

bye for now,

Lori,James and Degan

Sunday, January 4, 2004 9:35 PM CST

Just a quick note to say hey! We are still in the hospital but hope to be leaving tomorrow. Degan is tolerating his feeds pretty well. We started on Friday at 20cc every 3 hours and have slowly went up. He is now up to 60cc/ml (2 oz.)every three hours. I think we'll be at this amount for a while he seems a little uncomfortable after he gets finished. Our ultimate goal right now is 90cc's (3 oz) every 3. Hopefully this time when we get outpatient we will have a pump at night instead of having to get up in the middle of the night to feed him. I'm really hoping anyways.
We also start our 180 day post transplant studies tomorrow. He has his MRI and his spinal tap tomorrow morning. Poor baby can't get a rest from poking and proding. Tuesday we have our long day at clinic and Wedsnesday we see Dr. Escolar. I'm not really looking too forward to seeing Dr. Escolar, I feel Degan has gotten a little behind because of all of his surgeries in the last month. I'm hoping she'll take that into consideration when evaluating him. He hasn't had therapy since before his gall bladder surgery a month ago. I hope he can get caught up when we get out of the hospital this time. Hopefully we will be headed home soon to start therapy with our old pros there. He will hopefully(insurance depending) be having the same therapists as Megan, his big sister, had.
I can't believe we've been here already 7 months. It seems in one way so long yet in another such a short time. We want to thank you all for your support you have given us. It means more to us than any single one of you can imagine. We wish everyone a great new year.
One more thing, thing it may be a while before our next update, since we are getting out tomorrow. I'm not sure if the computers at the RMD house are fixed yet or not. I know how upset some of you get when we haven't updated for a while so I thought I better give my excuse now.

Love,
Degan, Mommy and Daddy

Wednesday, December 31, 2003 6:48 PM CST

Happy New Years Eve!!! Degan had his surgery today. Everything went well. He's in quite alot of pain but its being eliminated by some pain meds. He's doing ok. The surgeon said he'll be able to eat in the next 2 days or so. We won't have results from his biopsy until Monday. They took a biopsy of his stomach to rule out if he has GVH in his stomach. This way we won't have a guessing game any more.
Other than that not much else going on I'll update as I know something.
We had a wonderful Christmas. We had several people adopt us and Degan got lots and lots of new toys and cute clothes. We want to thank everyone for your gifts and cards. Sorry we couldn't wish you a Merry Christmas but all our computers were broke at the RMD house. We're wishing you all a very happy new year full of love and peace.

Lori

PS this picture is from Christmas- He's in his Christmas outfit. I hope to get some other pictures up soon.

Tuesday, December 30, 2003 11:14 PM CST

Sorry the computers have been broken. We are now back in the hospital. Degan has not been eating by mouth even with the ng tube. Since the ng tube has come out and stayed out he has been eating about 3 oz a day. Tomorrow he will be getting a feeding tube. It will eventually be what's called a mickey button. Its the same thing as his older sister had. This will allow him to get the nutrition he needs and hopefully eventually he will start to eat by mouth. Its a temporary thing, it can be taken out when he eats enough by mouth. I'll update more later, its late and I'm tired.

Lori

Tuesday, December 9, 2003 3:45 PM CST

We're off TPN!!!!!! Degan ate 6 oz yesterday and today Dr. Driscol said we could take him off tpn. He has to start eating obviously a lot more but if he doesn't I guess we're gonna put in the ng tube. We'll see how Degan does tonight and tomorrow. I'm so happy they are at least giving him a chance with no tpn. The doc also said that if he didn't eat what he should that we could always put a bag of fluids up at night to make sure he doesn't get dehydrated. Other than that not much else going on. I'll update later tonight if anything else comes up.

Lori, James, and Degan

Sunday, December 7, 2003 11:49 PM CST

Since the last entry Degan has poohed and poohed and poohed. I'm sure that's too much information for all of you but it did make the nurses happy the first time. They came in on the 4th and did a happy you poohed dance. Yes really, it was quite comical. Anyway Degan has started to eat slowly, very slowly. He is progressivly getting better though. He's back down to his 3 to 3.5 oz a day but at least he's taking that. The docs are talking about putting in a ng tube to get him to eat more. Thats a tube that goes into his nose and down into his stomach. I'm not real excited to do that but James thinks maybe we should to at least get his bowels moving again. It would only be temporary but I know he'll just ripped it out like before. We think his whole gut may still be a little sleepy from the surgery. It hasn't even been a week yet. He weighed 5.8 kg yesterday. That's about 12 lbs 7 oz. Not sure today James couldn't remember. He is staying about the same weight as he has been so I guess thats good that he's not losing any but we really want him to gain.
I guess we'll see. We are getting him to drink milk through a syringe and also a small medicine cup. James isn't too keen on using them. I'm happy to just get something into him without him fighting for 45 minutes. He's starting to get an adversion to the bottle. He will suck on his pacifier but once he sees the bottle coming toward him he starts crying and throwing his head every which way. I'm not sure if he's just not ready or if he's getting lazy and don't want to have to work to get milk out of the bottle.-ha The docs are pushing us to get him to eat but he's just not to excited about it. So if anyone has had this happen to thier kids please any ideas are welcome. We've tried just about everything.
Our friends Theresa and Daryn are going home tommorrow. All the Krabbe moms(Angelique,Michelle,Theresa, Kelly B. and myself) went out to lunch today to say bye to Theresa. Daryn was transplanted about 1 week after Degan. We will miss them so very much and hope they have a very Merry Christmas and hopefully we won't still be here when they come back for their 6 month studies in 6 weeks! We love you guys but we really want to go home too!!
Also Degan has a new healthy baby cousin. Alex Christopher was born today back in Colorado. James' aunt Chris and her hubby Jason had thier first child today. We are so happy for them and can't wait to meet and greet the new babe.
Nothing else is really new here. Its cold but not as cold as home I'm sure. All the leaves have fallen off the trees and now you can actually see in front of you. There are so many trees here. It was really beautiful when the leaves changed but now-not so much. Any way we can't wait til we can come home. Now if we could just convince Degan that this isn't home. _HAHA

Love
Lori, James and Degan

Wednesday, December 3, 2003 5:47 PM CST

****NEW PHOTOS ADDED 12-7****

Just a quick note on Degan. HE is doing pretty well today. We ended up having to up his morphine a little last night and it seemed to let him rest comfortably through the night. He hasn't needed anymore since 2am. We did get a few smiles out of him today. He's still not ready to move a whole lot. James and I both held him for a little while today but he was happier laying on his bed. He didn't get to eat yet today, they are waiting for a dirty diaper or to hear some good bowel sounds. Neither have happened yet but they said it should any time now. Hopefully tomorrow he will be able to start eating. NOthing else is new so I'll update later if anything happens.

Lori

Tuesday, December 2, 2003 6:43 PM CST

Degan had his galllbaldder surgery today. He seems ok. He wakes up and cries for a few seconds and goes back to sleep. He's on morphine for pain and can have a very small dose every 2 hours if needed. The surgery was only about 2 hours long. That was including going under anthesia and coming out. We did get in a little early so we were back here by 2 or 3. The surgeon said that his gallbladder was very inflamed so it was good that we got it taken out. He won't be able to eat now for at least 24 hours. They said that they need to hear bowel sounds first. Hopefully we'll be on the way to eating a bunch soon. Thats all for now. I'll let you know how he's doing tomorrow.

Lori

Monday, December 1, 2003 11:19 PM CST

Newest news- Degan is having surgery tomorrow. He will be getting his gallbladder out. He's been on meds to try and disolve the stones but the docs think that the stones will probably come back anyways, so surgery is best. Also they said his gallbladder is inflamed. They are saying there are many reasons why a baby his age would have gall stones. Obviously a "normal" baby wouldn't but with everything his body has been through..... One was because when he was very young he was on antiboitics(we think they are talking about when he had that really bad butt break down during transplant), also the prolong use of his TPN could be a factor and his not eating like he should so all these put together means not such a great gall baldder. Hopefully this will be all the surgerys he needs for a LONG time.
He is scheduled for noon but they are hoping maybe sooner. The surgery itself will last about 1 hour plus a couple hours in recovery so we should be back up on the unit by 4 or 5 I'm guessing. His surgeon said he's never taken a gallbladder out before on someone so young so to me - thats a little scary. The surgeon (Dr. Skinner) said that he probably won't be able to eat for a couple days so he'll be on more iv fluids and tpn to keep him from getting dehydrated. This is a little disappointnig to us considering he's been eating pretty well now for the last few days. He ate 10 1/2 oz yesterday. We're hopeful that this will solve the whole eating problem though and that he'll be on his way up to 16 oz soon so we can come home.
Tonight we got a pass to go out of the hospital with Degan for a litttle while. We had a Christmas celebration with the other Krabbe families. We all got together to visit, eat and of course open presents. It was really fun except we had to leave early because we had to get back to 5200 so Degan could get platlets before surgery tomorrow. Getting together with our "Krabbe family" sure makes it a little easier to be away from our families at home. Don't get me wrong we still miss everyone at home but its different. We all can talk about our kids and what we're all feeling and every single one of us actually understands what the other one is going through and can relate. Its like that with all the transplant families we've met since we've been here but we mostly know just the Krabbe families so that's why its so special. Who knew such a horrible disease could make such a special bond with so many wonderful people.
Please continue to pray for all of us here. Dylan will be having surgery Weds. Daryn will be going home next week to Michigan YEAH!! and Ashleigh will find out for sure when she is going home tomorrow. - Thats all I know on the Krabbe kids. There are so many other kids here that we have met also. Just since we've been on the unit this time there have been 2 kids earn their angel wings and I think 3 go home. Mr. Blue hair is going home tomorrow.Yeah!!!
Well I'll sign off for now and update more later.

Love,
Lori, James and Degan

Wednesday, November 26, 2003 7:05 PM CST

Just letting you know we are still here at 5205. Dr Martin said that they still want to watch him and have some questions they need answers to so we will be here til next Monday or Tuesday.
Degan is still happy and playful. He's ate about 8 oz two days in a row now. YEah!!! We might be started in the right direction but we've learned not to count our chickens til they hatch so we'll see. Happy Thanksgiving to everyone. I'll update later when I know more.

Lori

Tuesday, November 25, 2003 7:48 PM CST

Just a quick update. Degan had his second ultrasound today to look closer at his gallbladder. It showed that there is no blockage but still some stones so we will continue on the actigal to get rid of them. He gets that med 3 times a day and we're told it should disolve them pretty quickly. He ended up eating 8 oz yesterday, although today only 2 so far. He didn't get to eat for 14 hours today due to the ultrasound. First he slept in til 10:00 and then they were suppose to come get him for his ultrasound at 10:30 but of course didn't until like 11:30. Then what they wanted to see didn't show up right away so we had to come back at 4:30 for them to check again. Of course, he couldn't eat until after that. They said he could have juice or water. He wasn't impressed by water at all. Oh well the test is over and all is well. Last night he didn't start to eat til later too.
We're looking at getting out possibly tomorrow. We've been told not to rush getting out,(yeah right) because I guess a church comes in and makes a really good Thanksgiving dinner for everyone up on the unit. I'm sure Ronald Mcdonald house has something plus we've had an invite to go to Daryn and Teresa's too for several weeks now. I doubt if we'll go there but who knows. We haven't really discussed it since we came in here.
I did ask about his spleen and Dr. Martin said it wasn't anything to worry about. It's probably from something with transplant.
I'm suppose to update if we do get out of here tomorrow as asked by Amy so if we do I will sure try. Her mom, Loretta should be so proud of me and my updates this last week along with any one else who is checking in on him.(I know I'm horrible at keeping it updated)
Nothing else is going on so I'll talk later.

Love,
Lori,James and Degan

Monday, November 24, 2003 8:33 PM CST

Today we got some answers. Degan's liver functions were quite high today. He got an ultrasound of his belly, which included his kidneys,liver,spleen and gallbladder. It showed that he has some gall stones and that his spleen was enlarged a bit. The doc said that maybe that's why he hasn't been eating. He didn't say anything about why his spleen was enlarged but we're speculating that its from the steroids. One of his heart ventricles is enlarged from them so maybe its the same reasoning. We'll ask tomorrow. Tomorrow we will get another ultrasound to look closer at his gall bladder to make sure there isn't any blockage from the stones. We are suppose to start on actigall tomorrow to try and disolve the stones. The doc also said if there was blockage we would look into surgery. I'm confused about surgery because if actigall will disolve them why would we need surgery? It probably depends on how big they are and what all they are blocking. I'm glad that they found out something anyways. Dr. Martin started Degan back on megace at a half of the dose he was getting before. I'm really hoping that it doesn't feel his tummy up with gas again. I guess they won't know if thats why he was full of gas unless they try.
Degan continues to be happy and playful. He has ate about 5.5 oz today although yesterday only about 2.5. Dr. Martin said we should hopefully be out by Thanksgiving so we'll see. We were hoping to go home today or tomorrow so I'm not real sure anymore. He wants him to be eating more first. He said if he would eat at least half of what he was eating before than we could get out. I'm not sure what half he's looking at because the last week or so he's only been eating about 4 oz day. He hasn't ate 8 or 9 oz since Sept. I'm sure he would like a few days of consistincy before letting us go. It makes perfect sense to me.
James and I are doing fine. We're still anxious to go home home(CO) but we feel fortune it to be here when things like this come up. We miss everyone tremondously and are very thankful this year for our beautiful son.

Hugs and Kisses

Lori, James and Degan

Saturday, November 22, 2003 4:51 PM CST

HI all!!
Just thought I'd write a quick note and let you know whats going on. We're still here in the hospital. We are actually in the same room as we were when he had his transplant. (5205)
All tests so far have come back fine. We're looking at possibly getting out Monday or Tuesday. Of course that's when his favorite nurse/girlfriend is working.-(Amy)
He's alot happier. He's smiling and even laughing a little bit again. He's still not eating much but that's been our battle any way. Today he's ate 2.25 oz. He still has a few more feeding though. He's been keeping everything down except for a few spit-ups. Since we've been in here he's been on iv meds but Jey said he got his blood pressure med today by mouth. The doc today said that maybe tomorrow we'd just his oral blood pressure med instead of iv AND oral. He kept his med down today so I hope he'll continue to do so on his other oral meds. As far as we know he will NOT be going back on megace(appetite smimulate) which they think is why he had so much gas in his stomach. Its one of the side effects from the drug. Other than that nothing else is new. I'll keep you posted if anything should change.

Love,
Lori, James and Degan

Thursday, November 20, 2003 4:03 PM CST

Sorry once again its been so long but the computers at the house have had viruses on them a few times now. Well lets see where do I begin.
Degan had his hernia surgery 11-10. He also got one of his central lines taken out. He did really well and is fine from that. We were hoping that he would pick up on eating. Unfortunatly he did not. On Friday the docs decided we would try a new med called megace. This med is an appetite stimulate. He really had went down. He was at 8 oz and had went down to 3 or 4 oz a day.We were hoping that this would get him eating again. Saturday and Sunday looked promising and on Monday he was up to 7 oz. We said ok here we go!!
Tuesday we saw Dr. K and she thought he may have whats called GVH in his stomach. GVH is graft vs. host which is when the donor cells sees the body as a foriegn place and try to attack it. She came to this conclusion because he still wasn't eating a tremendous amount and his platelets we staying about the same. He was holding his platelets which is good but they just wouldn't go much higher than between 30 and 50 thousand. She decided we would switch one of his meds to an oral one instead of a iv. So we are off cyclosporin which gave him all the hair and we're now on FK50?. We did that and was suppose to come back on Friday.
Wedsnesday morning Degan woke up about 6am breathing kinda hard. He usually does this when he's in pain. He got his pants changed and acted like he wanted to go back to sleep so I decided I would give him 2 of his meds before he did that. I gave him the meds and within 20 minutes he was crying. Not just a normal cry but a screaming pain cry. I thought maybe he was hungry but he had to wait an hour after I gave him his meds. We got thru the hour and it was time to eat. He ate about an ounce and then once again started his screaming crying. I tried to burp him with no prevail. He continued until about 9:30 when we decided to take him into clinic. Well at clinic they decided to take an x-ray to make sure they're were no obstructions. The x-ray came back with his stomach full of gas. In the mean time our labs had came back. His white count was up to 17 which was almost double the amount from Tuesday. His bilirubin was up also. The white count being so high meant the body was trying to fight some kind of infection off. The doctor decided to give him some iv fluids since he had only ate 1 oz since 7:30 that morning and it was now 2pm. Degan wanted nothing to do with eating. He wouldn't even take a pacifier. Also they started a general antibiotic. After that was done they decided start on an antibiotic regimen for a couple days. He got his first dose at clinic. Once his iv fluids was done he started vomiting. We went home and he continued vomiting and so we decided to page our primary nurse practioner. She told us she would feel more comfortable with us going to 5200.
So here we are. He continued to vomit through the night. His stomach has settled down a bit today. The docs said that he may be actually getting some of the gas out of his stomach by vomitting. They took blood cultures yesterday but no news yet. They also sent a stool sample today to check for different infections and viruses. He also got another x-ray to see about the gas and to make sure they're are still no obstructions. We have no news yet on any of the tests but I will surely keep you updated now that I have access to a reliable computer again.
He seems to be a little bit more comfortable but he wants to be left alone. He is in no mood to be snuggled or to smile. He will let you know that when you try to do either one with him. He's at his happiest being on his tummy with a pillow propping up his belly.
James and I are doing ok. Its just a little discouraging but we look at this as just a small bump in the road. There's not much they can do for the gas but they are treating him for GVH just in case. We just have to wait and see what happens. This nothing compared to what some families have been through.
I promise we will keep you updated.

Love,
Lori James and Degan

Saturday, November 1, 2003 9:44 AM CST

****Friday, November 7- New pictures added****

Sorry its been so long since an update. Not a whole lot going on though. We did see Dr. Rice (the surgeon) a couple Fridays ago. Degan will be getting his hernia and his single central line out on Nov. 10. We were hoping for sooner but I guess its not an emergency so we'll have to wait.
Degan had a Happy Halloween. He dressed up as a pumpkin or a jack-o- lantern I guess it was. He was the cutest pumpkin I've ever seen. I guess I may be a little biased though. I'm hoping to get some pictures of him up in his outfit. I realized we have some very old pictures of him. He has so much more hair now. We do at least have one new picture. Its in the photo album. We took it up on 5200 on Dylan's birthday. He turned 1 and he had a great big party in the family lounge up on the floor.
We all(Krabbe family) met at clinic yesterday so we could see each other and take pictures of each other's kids. We had Degan as the pumpkin, Ashleigh as a bunny, her sister Mckenzie as sleeping beauty?, I think, Daryn as a skunk and his mommy Theresa as strawberry shortcake. Then we went up to 5200 and saw Dylan, the star. They all looked so cute all dressed up. To think, I wasn't even going to get Degan an outfit. Thank you Kelly and Debbie for convincing me I needed to.
We're still waiting on Degan to eat so we can go home. He's still eating only about half of what Dr. K wants him to. She said we might try a medication to get him to eat but she wants to wait unti after the surgery. She's hoping maybe the hernia is stopping him from eating. I guess we'll wait and see.
I'm not as good at writing as James is but I thought if we waited for him to update it may be awhile. He's not a big fan of the computer. You'll just have to deal with me and Jey's entries will be a special treat from time to time.
We miss you all and love you so very much. Have a great weekend and we'll talk later.

Love,
Lori,Jey, and Degan

Tuesday, October 14, 2003 7:50 PM CDT

Whew! Another long day in clinic. Days like today seem far more tiresome than a ten hour day in the welding shop! These days though, I will look back on as the greatest days of my life. What an opportunity, to spend every day with my son. His first smile, first laugh, every single milestone, a gift to us.
Almost every day I long for Colorado. The seasons pass while I dream of them. I think of the trout I didn't catch, the leaves I can't see change and fall, and of the elk I will not chase. I wish to play with my dog in my yard. I miss family and friends. Sometimes I just want to put in a hard day's work building a fan.
Then I think of Degan. I think of going home and getting back to life. Will I miss his first word?.. his first step? Will I be to busy with the rest of my life. I pray not.
Thinking about this really makes me feel like society has it all wrong. We're such a busy people. How are you supposed to know your child when you're only with them during evenings and weekends? When did "parent" turn into "provider"?
I suppose all of this rambling is coming from someone given way too much time to contemplate. I just want everyone to know that we are far from miserable bieng out here. Even though we miss our home, we're going to love every moment of every day spent here with God's little gift. Like I was saying, soon we will be back to our lives and we will miss these times with Degan.
Moving on to the actual reason you are all reading... Degan continues to do fine. He has been acting a little punky the past couple of days and we continue trying EVERYTHING we can dream up to get him eating. Dr. K. is very pleased with his progress and overall condition. She has a couple of tricks up her sleave yet and we will spend the next week trying them. First we will up his steroids for a few days and see if that makes him hungery, if not he will try a med. that should increase his appetite. This med. seems to be a last ditch effort on her part. We walked out of clinic today saying, "Why didn't we try this first?" But hey, she is Dr.K. and she knows what is best. Re-reading that sounded to me like I was being sarcastic.
No way! To us she is the best Dr. in the world. If only the world was full of people like her... it would be a different place altogether. Sometimes your logic will try to second guess her but her knowlege is always the high card. Degan also has a small hernia (hope I spelled that right). We will most likely visit the surgeon on friday to see about fixing him up.
Before I wrap up I want to take a moment. You should take one to. Remember little Noah. To all of you who know of him through us, he went to Heaven on Oct. 7. To the rest of you, especially our Krabbe transplant family that has gathered here in Durham...take a moment. Keep him in your hearts forever. He was like the little godfather of the transplant kids. His parents helping to guide us with tips and a whole lot of forsight on this experience. They will be going home soon and let me tell you, it won't be the same without the Prichard's here. We love you Noah. Fly free little Buddy.

Monday, October 6, 2003 8:23 PM CDT

Just wanted to let you all know what's new so far- not a whole lot. We go see Dr. Escolar tomorrow along with going to clinic. On Weds. we see the eye doctor and then I think that's it for the week.
I'm writing to ask that everyone prays for little Noah tonight before you go to bed. He is having an awful time and his family needs all the support and love that all of you send to us. Please stop by thier website www.caringbridge.org.hi/noah and give them some support. We want to thank you all for all your love and support through our journey here. You have no idea how much your kind words mean to us. It may mean a smile on day when we really need one or just added support when we feel like we can't go on. We miss being home but yet we look around and realize we're going through nothing compared to some of these transplant families and those we've met here at RMD. We love all of you and kiss all your kids tonight from us.

Love,
Lori,James, and Degan

Friday, October 3, 2003 2:11 PM CDT

We got our MRI results back today. Everything looks good and Degan's mylinating. I'm not sure if that's how you spell it or not. Never was a great speller. Anyway we had our nerve conduction test today and we'll see what that means. He's still not eating well but he's up to 12 lbs now and he laughed again last night. He laughed for the first time earlier this week. Last night we put him on his tummy and he just started laughing. We weren't even doing anything. Once we started laughing he started laughing some more. It was really great to hear laughter. I remember we only had a few weeks of laughs with Megan and then she stopped laughing and smiling. You don't realize how important children's laughter is until you don't have any.
Please pray for little Noah and his family. They are still in the PICU and it doesn't sound like things are going well at all. I just pray that he will pull out of this one. He is so strong. He has fought so much. It said on the website that he is getting tired. They have been here since January. My heart goes out to him and his family. I wish there was something we could do but its hard when you can't go out and about like you normally would with a child. I thought we'd do dinner for them or something but I don't know when their home and what they'd like. They can't stay at the hospital which is really hard for them, as well as it would be me if in that situation. Of course they say they don't know what they need. I wish I knew what I could do. I just offer me. If they need anyone to hit or cry too-anything. Sometimes I still don't understand God and his ways.

Lori

Wednesday, October 1, 2003 7:51 PM CDT

********NEW UPDATE******
Well we have some new news. We have been doing our 100 day studies this week and we saw Dr. K yesterday. We had our ber(hearing) and ver(eye) test and our eeg last week. All came back fine. His ber test showed that his hearing wasn't as good in one ear as the other one but I think it was because they didn't have the thing in his ear all the way the entire test. Yesterday we had our Echocardiogram and our pulmunary function test. These pretty much check his heart and his lung function. His Echo came back pretty good. His left ventricle is slightly larger than it should be but they said that its nothing major and that its pretty normal for being on steroids. His lung function was fine, he passed with flying colors. Today we had his MRI and his spinal tap. We don't know anything about them yet but I'm sure when we go to clinic on Friday we will. He didn very well with both of them. He was sedated for his MRI. We saw Dr. K yesterday and she was still pleased with his progress. He got off actigall and again they went down on his steroids. We also got the news that we probably will not be coming home as soon as we would of liked. It was suppose to be here in the next couple weeks but it looks like we'll be here longer. Dr. K said she wanted him eating 16 oz before she would even consider it. He's still only eating around 8-9 oz aday. He also gets his TPN at night so he's getting all his nutrition but we really don't want to go home on it. I tried to pin her down on a date;she said she didn't want to make any promises she couldn't keep, but she figured it would be at least another month. I told her I understood and appreciated that she didn't give us a specific date for that very reason. So it looks like we'll be here for another month at least. It really depends on how long it takes Degan to get up to 16 oz. We've tried feeding him every hour, every 3 hours, it really doesn't matter. He only eats what he wants and if we try to push him a little bit more he ends up just throwing it up. I guess it's gonna take time and we have plenty of it so...oh well. We had planned on being here until Christmas or longer so I guess if we get to go home in another month we'll still be home before we were expecting it. It's not that bad here anyways. It's getting a little chilly here in the mornings but still nice in the afternoons. We're starting the fall weather now.
Other than that not much else going on. I got an email from I guess a distant cousin that lives around here that I need to get ahold of and we've also met(well over the phone) a wonderful family that got a hold of us from a friend of my cousin,Becky in Ks.
Nothing else new so I will type later when I know of something. Like I said earlier we go to clinic on Friday and we also have our nerve conduction test on Friday. So maybe Sat or Sun I can update again.
Love to you all,
Lori, James and Degan

Wednesday, October 1, 2003 7:51 PM CDT

Sunday, September 28, 2003 6:44 PM CDT

I know I know it's been forever since we updated again. But not a whole lot going on. I tried to update last Tuesday but after I had typed a very nice updated page the computer froze up and it wouldn't post it so I gave up.
I can update you all on our entire week this way.
Tuesday we saw Dr. K and Sue. His platelets were at 64 and his Hemoglobin at 11 I think. He still wasn't eating exactly what they wanted so we ended up going down on TPN and on steroids. We're now at 250 ml on TPN and at 1.5 on Solumedrol(one of his steroids). We also got to go down to once a day on another med called actigall. He weighed 11 lbs 15.9oz. Also today we had a couple of other things happen. Ashleigh got to go outpatient. Yeaaaah!!!caringbridge.org/nj/ashleigh.ryann Also Noah was back in the hospital. He had gotten sick over the weekend and was in PICU on Saturday. I went to visit them and they were getting out that afternoon.
Wedsnesday we went out to eat with our favorite nurse, Amy and her lovely mom. Forgive me for not remembering her name. I feel really bad but I'm horrible with names. She was so nice, come to find out the fruit didn't fall far from the tree at all. We're all trying to find Amy that perfect man. Hopefully one of these days. Kelly Brown babysat our little man.
Thursday, we had our first 100 day study test. It was his bear and ver test. These tests are to see if the electrical impulses are getting from his eyes and ears to his brain. Also we ended up having his eeg which we weren't scheduled for until the 8th of October. Luckily they had time to do it along with the other 2. We haven't heard any other news from them yet. Maybe on Tuesday if we're lucky.
Friday- We went to clinic like usual. Platelets-51 hemoglobin was at 10 something. (My memory just keeps getting worse) Degan wasn't eating very much at all. We were lucky to get 7-8 oz a day in him since Tuesday. His weight was 11lbs 8oz. A little loss but they weren't too worried about it. Noah was again admitted into the hospital. We got some company on Friday night. Kelly and and old friend Micki and by old I mean someone who we met when Megan was around. A little inside joke there. Anyway we had a nice visit with them. Micki is so funny and made us all laugh. She got lots of smiles out of Degan. Micki was here for a conference with Dr. K and some of the other doctors for Hunters Hope.
Saturday was pretty uneventful. We sat around the house most of the day. Then Degan and I took a walk to Duke gardens. I needed to get out of our room for a while, and I thought Degan might like a change of scenery. He ended up falling asleep before we got to the end of the block. Jey stayed home and watched boxing and did laundry.
And now we're to Sunday. Another nice relaxing lazy day. We were going to go to the zoo but by the time we thought about it, it was getting a little late. So maybe sometime this week we'll go.
I would again like to thank anyone and everyone who has been here for us since we started this journey. There are so many. There are people we don't even know who have reached out thier hand to help us. Also I would ask that you pray for all of the children here especially Noah caringbridge.org/hi/noah and Dylan, caringbridge.org/europe/dylan (who still has yet to start Chemo). These children are so strong. They keep fighting when I think some of us adults would of gave up so long ago. Them and their parents have been through so much. Please stop by thier websites and give an encouraging word. You don't realize how much they mean to us all.
Remember to thank God for your children because they are so precious. Every minute, every second that you have to spend with them is a blessing from above. We didn't realize just how precious life was until Megan. Again we thank you and love all of you very much!

Lori, James and Degan

Tuesday, September 16, 2003 3:48 PM CDT

Yes I am FINALLY updating the page! Nothing too exciting going on.We saw Dr. K today. He's doing as she wants him to do except for eating still. Last week he started a stomach med called Reglan. He started Wednesday and by Saurday he was no longer taking it. It made him extremely fussy and his feedings went from 7 oz to less than 6 in a 24 hour period. On Sunday we went back up on his steriods. He had been down to 1ml but we went back up to 2 hoping to increase his appetite and it worked -he has gotten up to eating 10 oz a day. Dr K said today that if we can get him up to 12 oz a day for a couple days in a row, we may be able to go down on the TPN again. They are going to keep steroids up for a while. They thought maybe they just tried to wean him off too fast. The steroids are what makes him so hungry but they try to wean babies off sooner than other kids because they also make them weak. HOpefully next week we'll be eating more and can go down on both TPN and steroids. He weighed 11 pounds 8 oz today!! Yeah!!! He's finally gaining some weight.
Other than that not a whole lot going on. We'll be starting all our 100 day test in a couple weeks. Still no word on when exactly we'll be going home but I guessed by Degan's big sis's b-day(10-28) and Sue(Dr. K's NP) said yes. I'm not getting my hopes up yet because they haven't said "Go Home". I told her last week I'm not even asking when we get to go home because there are so many families still here after 100 days. Now that I asked though I'm really hoping. I sure would like to be home for what would of been Megan's 6th birthday.
Our friends Shea and Ellis left Thursday to go home. We will miss them greatly. Ellis is a 6 year old boy with a brain tumor and was here getting radiation. They were the only people here at RMD that I got to really know except Carolin and Elijah. He's doing awesome and hopefully some day will get to go home soon. I know mom and him both are ready to get back home.
No more exciting news except we sneaked to Noah's 1st birtday party Sat and had a great time. SHHHHH. There was 8 Krabbe families there. Today is actually Noah's birthday and the Prichards have asked that we pass along to say a extra special prayer for Noah and for the healing of his little body. He's been through so much. We saw him today at clinic and he's not feeling to well today. Hopefully he'll feel better soon. Stop by and tell him happy b-day at www.caringbridge.org/hi/noah Also Greg and Erika Sears came and it was wonderful to see them again. We hadn't seen them since we went to the HH symposium 3 years ago. They had a daughter, Haley, with krabbe that passed about 5 years ago. They lived in Denver when she was diagnosed. We got in contact with them when Megan was first showing symptoms.
Hopefully Dylan (from Netherlands) will start chemo this week. That poor boy has been through enough already and he hasn't even started transplant stuff yet. They've been here 6.5 weeks already.
Ashley has gotten out of PICU as of Saturday night and I haven't heard how everything is going yet. I hope great!
We saw Daryn Saturday along with his mom and aunt and soon to be uncle. He's soo cute. I'll have to double check some website names and let you know on them so you can check on all the other Krabbe families here.
Thank you all for all of your thoughts and prayers for us and everyone else here. Please continue to pray for all of us here. We all need some extra stregth and prayers.

Love ya all
Lori, Jey and Degan

Thursday, September 4, 2003 7:37 PM CDT

Well yesterday we got the nd tube put in. It was very tramatic for both Degan and Mom. He didn't like it at all. Finally we got home and he ate 2 oz.by mouth before home health could send out the pump. We were so excited but it didn't last. He ended up crying and screaming most of the night. Usually he would cry until he wore himself out and then he'd fall asleep. As soon as he woke up again he would start crying. This morning he was getting his diaper changed when HE decided he had had enough of the tube and perceded to pull it out. We called Dr K and they have decided to wait until Tues to reacess him. Hopefully he'll be eating more by then and maybe he won't get it put back in. Daddy pushed him a little more tonight and he is doing a little better. We let him eat whatever he wants out of the bottle and then we fill a syringe and slowly give him more. Jey got him to eat a whole other oz that way tonight. So keep praying that he'll eat more.
I was disappointed to hear that we missed his girlfriend Amy Tuesday. We had just left at 12:30. Hopefully tomorrow maybe? Maybe we'll see if she's working and go to 5200 to see her.
Nothing else new so we'll update Tuesday unless something else comes up sooner.

Lori

Tuesday, September 2, 2003 12:19 AM CDT

Fast day at clinic!!!! We went at 8:30 and we're home by 1:00!!!!
Degan isn't eating as well as they would like him too so tomorrow morning he'll have a nd tube put in. Thats a tube that goes through his nose and goes down into his small intestine. Hopefully with him digesting more, his appetite will go up. He'll probably have that for about 2-4 weeks. Anything he'll eat by mouth will be a plus and he also will continue with TPN at night. They are actually uping his TPN to 400 cc a night instead of 264. He IS eating by mouth but he's only taking in about 6 oz a day instead of the 12-18 they'd like to see. They want this baby to beef up! He hasn't lost any wieght but he hasn't gained any either which they said he should be for as young as he is. He weighed 10lbs 4.6 oz today.
He's doing really well with platlets. He was at 65 Sunday and today he is at 59. His cut off point is 15, which means that is when he has to get tranfused. (more platelets) Its been a week ago today since he has had to have platelets. His hemoglobin is holding real well too. He hasn't had red blood for 2.5 weeks now. His count today was 8.3 and he gets a transfusion when his count is 8. His white blood count was 11.3 today which is good, it was 10.6 on Sunday.
Dr K. said he is doing what he should be actually alittle better than some because with his platlet counts staying that means he is producing platelets which some older kids don't produce for a while.
Jey and I are doing well. Its so nice having a car here now. I had to go to Walmart yesterday and get us some more junk food and diapers. I was a little scared the first time I went but I had no problem finding my way back. Now its no problem. Now if someone asked me for directions, that would be a little different. I couldn't tell them how to get there but I could take them there. I'm slowly learning my way around. I'm not as adventurous as Jey is. I get paniced when I get lost. I know the main things though, Walmart, the grocery store and most importantly,one of the malls.
I miss all my family and friends back home, sometimes more than other. We got new pictures developed and there were some that Jey had taken before we left home. I didn't realize how much I do miss home until I look at those pictures. I even miss work- actually not work itself but the special kids that I work with. Anyway I hope everyone that reads this knows how much I love you and how much I appreciate each and every one of you and thank you for all your kind words and prayers. I can't wait to see you all again soon!!

Saturday, August 23, 2003 12:03 AM CDT

**NEW PICTURES AS OF AUGUST 27TH**

Hi All!!

Degan is doing pretty well. His bilirubin went up so we are giving actigall twice a day again instead of once. His white count dropped so he got gcsf on Thursday and its up again today. He was having a pms day yesterday and the docs said it was probably the cells growing from the gcsf. He was smiling and cooing one minute and screaming the next. It made me remember the days and nights of screaming and crying with his big sis Megan. He saw Dr. K on Tuesday and she said things are going the direction they are suppose to be so we doing good. He's holding on to his platelets and his hemoglobin is staying up nicely too. We have some new pics we just have to get Kelly's camera back to her so she can put them on here. Also I really hope she is saving them to a disk so we can get them printed off when we get home. I wish we had a digital camera and a decent computer so we would know we got good pictures and then we could print them off. Oh well someday.
James is on his way back here. When I talked to him earlier today he was about 180 miles from Louisville KY. He figured he'd be here by midnight if not earlier.
I want to say hi to everyone at Orchard Avenue and sorry you have to go back to work. I'm missing you all, well sorta-hahaha. I've really enjoyed having the time off that I have had. I just wish we wouldn't of had to go through this to get it!
News on our friend Daryn Jackson.-He has engrafted!!!! Yeah!! Can't wait to see him at clinic. We haven't seen Noah lately so I have no news on him but hopefully Mom and Dad are getting a little more sleep. I wish the same for Ashleigh's mom. Last I knew she wasn't having the greatest of times up on 5200. Please continue to pray for everyone here on 5200 as well as us folks who are outpatient.

Love,
Lori

Thursday, August 14, 2003 12:36 AM CDT

We just got back from clinic. We found out that we have >(greater than) 99onor cells growing. YEAH!!!!!!! I have been waiting for this test since the new cells went into him. He is doing as well as expected. He still doesn't like his oral meds but he's slowly getting better with them. Same goes for his green mask he has to wear whenever we go out of our RMD room. He's not back to his regular eating habit,(3 oz every feeding) but he is still eating so that's a plus. Its taking him about 24 hours to eat his 3 oz now but soon enough he'll be chuggin' that bottle down.
We saw Dr. Kurtzberg on Tuesday and she said he looked good. He got taken off his gcsf(helps the white blood cells grow) since his count was so high. He will get it when his blood count goes down to 5.0. He got taken off his lasics, another med got reduced to a smaller dose and one of his oral meds got dropped to once a day instead of twice. So Tuesdays will be our major medication changes, that's the only day we see Dr. K.
Daddy(Jey) flew home today to get the car. Degan was not to happy when dad told him this but daddy promised he would be back. It seemed to calm him a little. His Nana is still here and I'm sure he'll be spoiled even more by the time she leaves.
We've seen a lot of our new friends since we started going to clinic. I saw Dylan and Daryn today up at 5200. Noah yesterday at clinic along with Cody who we haven't seen forever. I always see Ashleigh's mom but haven't peaked my head in to bother Ashleigh yet. Elijah lives next door to us at RMD plus we usually ride the shuttle with him and dad to clinic. It's always nice to see Ellis and his Mom Shea's smiling faces at dinner at RMD. I always see Haley's sister and mom but have yet to see Haley. I met her sister up on 9200 in the family lounge. Anyways, you get the idea, we've met a tremendous amount of people while we've been here. I continue to pray for all of them as well as you should. Some of them have had complications with the whole transplant experience and we give them and their parents big hugs and hopes that everything will turn out how they want it to be. When we started here I didn't know if I was going to be able to do this or not but I just kept hoping and praying that everything would be ok and so far it has been. I just haven't held my breath for anything yet_haha!
I've told myself to not get excited until there is something to get excited about. Well today I'm EXCITED!!

Lori

Friday, August 8, 2003 12:37 AM CDT

Yes we are outpatient!!! Its been ok so far. I actually miss the hospital at times but I am glad we're out. We've been out since Tuesday and are slowly learning all the processes of giving meds and trying to figure out a schedule. Degan's Nana arrived on Weds. and we are enjoying having her around. I think she may enjoy seeing her great-grandson too! She's staying while Jey goes home this next week to get our car. It will be so nice to come and go as we please. The shuttle is nice but it will be nicer to have our own car again.
We are going to clinic everyday and will continue that for a while. He had to get platelets today. He has been going about 3 days before he needs them again. I'm not sure on how long for red cells yet but he had those on Weds. He's doing really good though. His appetite is coming and going but he is still staying around 10 lbs.
Its really kinda wierd when I stopped and thought about it today. Degan is two months old and Megan has been gone for 3 years, both today. It almost doesn't seem possible for either one of those things. I know Megan's watching over her little brother though along side his Grandma Woerpel. Sometimes he smiles in his sleep, one of our nurses told us that he must be dreaming of angels. I'd like to think so. Maybe even playing with his big sis.
We'll update later. We're still waiting for our test results to see if donor cells are growing. Keep your fingers crossed. Please continue to pray for all 6 Krabbe families here along with all of the other children up on 5200. They all are amazing kids.

Lori

Saturday, August 2, 2003 9:21 PM CDT

***Update August 5, 2003- Degan got to leave the hospital today! See new pictures! Look for new journal entry soon!***

Things are going well here. It's looking like Degan will be getting out of the hospital on Tuesday. On Monday he is having an ultrasound and a RFLP test. The RFLP test is to see if its his cells or the donor cells growing. (hopefully its the donor cells) The docs said we'll know on Thursday but nurses here say it'll probably be more like the following Monday. He's having an ultrasound because of the results from his swallow test and upper gi, he had last week. He's not aspirating, but theres a muscle that opens and closes to drain the contents of your stomach into your small intestine and I guess that's not working like it should. Their theory is thats why he keeps throwing up is because his stomach gets too full and it doesn't go anywhere so it just comes back up. They said in America they would usually do surgery to make a small incision to relax that muscle, but he's not a canidate for that because of the risk of infection. I guess in Europe though they just feed them a little bit at a time and the muscle will eventually relax on its own. So that's what we're doing. We will be going home on TPN so even if he doesn't eat a lot he'll still get his nutrition. His white count was at 12 today. His weight continues to stay around 9.5 lbs. and he's grown about 1/2 inch in the last 2 months. I can't believe he's almost 2 months already. Wow how time flies when your in the hospital! Ha Actually it really has though. I hope things continue to go well and we'll update when we know something new.
Lori

Friday, July 25, 2003 8:07 PM CDT

WE ARE ENGRAFTED!!!!!
The doctor said we could look at going outpatient in about 10 days. We have to wean him off of pain meds and oxygen. He's been off oxygen most of the day today and he's doing ok. It seems like when he gets into a really deep sleep and is completely relaxed is when his sats drop. They said the pain meds could be helping his sats drop too. We've went down to 1 microgram on his continuous pain med and up to 5 micrograms on his button. We only use his button when we change his pants and I don't use it every time so he's doing pretty good. He has never liked his pants changed even before we got into the hospital so I'm not sure if he's really in pain or he's just mad for exposing his rump. I do use it at times though because I know his bottom has got to hurt with the sore he has on it. It is also looking better and starting to heal.
Dad and I went to the mall today. He(Kelly actually) took me for an early birthday present. He knows how much I miss going to the mall with my friend Chris. Amy(our primary nurse) watched Degan and I guess he must of really liked her because he was awake all but 15 minutes of the 5 hours we were gone. He always wakes up enough to get changed and eat for us.-haha No really the last 2 days he's been awake for longer and we've had fun playing with him.
I will go for now and I'll keep you informed of any changes.
Love,
Lori

Thursday, July 24, 2003 12:37 AM CDT

Thought I'd update a little. Degan is doing very well. He had a chest x-ray yesterday and it looks like everything is fine there. We were scheduled to have a swallow test and an upper gi today but the doctor decided to cancel that until next week since x-ray came back ok. The reason for all of these tests were they thought maybe Degan was aspirating because he coughed sometimes when eating and also the doctor was concerned about why he's sats went down when we took him off oxygen. They also think he has acid reflux too. They added a med for that and we ended up changing bottle nipples and that, so far, has ended the coughing spells while eating. He still doesn't have a very big appetite but that's expected. He is getting iv nutrition called TPN plus any breast milk he'll take through mouth so they're not really concerned about his appetite.
Cells are continuing to grow. There's a number called his ANC and that needs to be over 500 for 3 consecutive days and then they say he is "officially" engrafted. His ANC was over 500 yesterday and 700 today so we are on day 2, again. This happened on Sunday and Monday too and then Tuesday it was under 500 so we had to start over with our counting of the days.
I'm not real good at updating so I'll let you all know this if you don't hear anything-that's a good thing. I know I'm a little backwards but remember no news is good news as far as I'm concerned. I wanted you all to know that things are going well here and we miss all of our family and friends. We have met and made new friends here and continue to pray for them and their children. May God guide the doctors and help heal these beautiful children.
Lori

Sunday, July 20, 2003 3:36 PM CDT

** Kelly took the hint hint...NEW PICTURES ADDED**

Just wanted to update a little and let everyone know things are going well here. Degan's white count today was 1.3. It jumped from .6 in just 12 hours!! Also he's been a little grouchy today and so we increased his pain med. Our wonderful primary nurse(Amy), said that he is probably in more pain from his cells coming in. She said the older kids have said that they ache all over when it happens. NO she didn't pay me to say she is wonderful!! All of the nurses here have been really good, some better than others but that's normal.
He's just growing like a weed. His cheeks are getting bigger and bigger from the steriods. I can't resist from pinching them. We're all doing pretty good though. We are finally learning getting lots of rest is the key.
We're a little tired of hospital food but there is a church here that brings a meal about every week so its been really nice having that. When we go home at night we can search the house frig for leftovers when meals are brought in there too. Also when I have extra time I'm cooking stuff and bringing it up to the hospital.
We're hoping to get some new pictures up soon so you all can see how well Degan looks.-(hint hint Kelly!) He really is doing so well. I just hope it continues to go this well.
Hugs and kisses to everyone.
Lori

Monday, July 14, 2003 1:20 PM CDT

Finally I'm updating!! Well I'm on my way up to the hospital and I called Jey earlier to see what happened overnight and he had this to tell me. Degan's white count is starting to go up- which means cells are starting to grow. YEAH!!! We won't know for a couple weeks if its donor cells or his old cells. Degan's hair is starting to fall out too. Not a whole lot Jey said but just a little bit. Also because of the mucusitous(sp?) he has been put on oxygen. His O2 sat went down to 88ver the night so he is on a 1/2 liter. Our nurse told us its nothing to worry about, usually when kids start to get bad mucus sores it happens. I will try to update again soon, but my ride is here so I have to go for now. I love you all-Lori

Friday, July 4, 2003 1:47 PM CDT

We haven't updated for so long but.........
TODAY IS TRANSPLANT DAY!!!!!

We started transplant at around 1pm this afternoon and we finished at about 1:50pm. Degan slept through the whole thing and we took tons of pictures and video taped it. It has been a very exciting day. It will take between 2-4 weeks before we'll know if the new cells have engrafted(started growing). I feel very emotional about it all. I'm so happy that Degan has gotten the chance to come to Duke and have this transplant. One way that I look at it is this- if his big sister hadn't of passed away of Krabbe disease, Degan might not of had this opportunity at life.
Everything has been going really well. I got a surprise(well sorta) yesterday: my Aunt Joyce and and my sister Donnie flew in from Kansas and are here until Tuesday. A very nice surprise.
One of our friends, Noah, got to go outpatient yesterday! YEAH!!!!!!! They have had a long road here at the hospital and I'm so happy that they finally got to get out. Its true what they say- you really become a family with these other families up here. We've only been in 5200 for about a week and a half and we already have met some wonderful people.
We are getting ready for the move up to 9200 on Monday. If you don't know, 5200 is temporarily moving up to the 9th floor. They are remodeling so of course we can't stay here. We should be back here in about 3 or 4 weeks but who knows we might be outpatient by then.
I hope all of you are well and keep praying for us and all of the families here at 5200. GROW CELLS GROW!!!!
XXXXOOOO

Love,
Lori, Jey, and Degan

Friday, June 27, 2003 1:04 PM CDT

***NEW PICTURES ADDED 7-3-03***

Just wanted to let everyone know things are going well here. Degan has started chemo and is doing pretty well so far. We did have to put a ng tube in though. That's a tube that goes into his nose and down into his stomach. He didn't like the taste of his Busulfin(1st chemo drug) and this way we don't have to fight him every time to take it. He gets it 4 times a day but we are almost done with it, so we could take it out. They suggested we keep it in for a while longer just in case there is something else he has to take by mouth that he doesn't like. He's eating well by mouth though and he has gained quite a bit of weight. He's over his birth weight now by about a pound. He had his nerve conduction test redone this morning. He had this test done before we were admitted but the results weren't what Dr K said she saw when looking at him so they were redoing it. We'll find out what the results are this time. I'm headed up to the hospital but wanted to fill everyone in so I might update again later on tonight if we know anything new. I'm staying at the hospital tonight and letting Jey get some sleep here at RMCD. Talk to you all soon hopefully. We love you!!

Tuesday, June 24, 2003 8:13 PM CDT

Hi!! We are finally in the hospital!! We were admitted with his bilirubin levels at 2.4(yes they went up for those people we talked to yesterday) But they admitted him anyways and started some iv fluids and by 6:00 tonight they are at 1.8 so we are on the GO for Chemo to start tomorrow morning at 4am. YEAH!!! We are so excited. A little scared but not too bad. I think its just the unknowns that are a little scary. Everyone here is great and have explained things very throughly but still, hearing it and going thru it is two different things. We want to thank you all for your thoughts and prayers for us and we hope things continue to go well. We'll try and keep in touch and we'll give a few people our number here at the hopital so those people will be responsible for getting it to any one else that wants it or just email us and let us know. Take care of yourselves and we'll be taking care of our babe!!-Lori

Sunday, June 22, 2003 10:55 AM CDT

Ok here I go again. I already typed this once and then somehow erased it so I'm having to retype it. So hopefully I don't forget anything this time.
We just got back from clinic and Degan's bilirubin levels were still to high to admit him today. They are at 2.7 and they have to be under 2 to admit and start chemo. They said we have until Tuesday to get them down. The transplant itself has to happen on a weekday so if we don't get admitted in the next two days we'll have to wait until the following Sunday. They are going to check levels again tomorrow and Tuesday so keep praying that they hurry and come down.
We were really disappointed when they told us we wouldn't be admitted today. I keep telling myself there's a reason, I'm just not sure what it is yet. I just keep in mind that this is only the beginning of Degan's journey. He has a long haul in front of him and this is nothing compared to what some families have been through. We are just so anxious to get this started.
Other than that nothing else is going on. We walked to clinic yesterday and went thru Duke gardens. It was beautiful. Its just like a huge park with tons of plants and flowers. It also has a pond!!(unfortunatly for Jey- NO FISH:(
Please continue to pray for us and all 3 of the other Krabbe families here. We all are at different places in our journey. We love and Miss you all VERY much!

Tuesday, June 17, 2003 8:35 PM CDT

***NEW PICTURES***
Hey everybody this is Jey for once, just wanted to give an update on Degan. He had his central line put in today (the 17th) and seems to be doing fine. The hospital did admit us to stay the night but only because it's not common to put a line in one so small. His biliruben level was at five this evening, still dropping but not quite enough to start his chemo in the morning. Dr. K says they will check again in the morning before they send us home just in case. More than likely he will be re-admitted this sunday to begin chemo on monday. All other tests and exams are coming back saying he is otherwise doing great and doing everything any other babe his age would do. Looking around I see that Degan
is blessed with the perfect circumstances for his transplant
while so many others have an uphill fight all the way. They truly are my inspiration. So if you're one of the many saying your prayers, please make sure you do for ALL the kids at 5200 D.U.M.C. thanx 4 caring...Much Love'
Us

Wednesday, June 11, 2003 7:48 PM CDT

Hey Everyone from Degan and Mommy!! Just wanted to update you all on what we have been up to and what our plans are as of now. Today we had a series of our outpaitent tests. We had some labs drawn, an ekg, echocardiogram, lung function test, and a couple others that I really can't even tell you right now. Tomorrow we go have an eye exam and we meet with Jane Cash(nurse coordinater) to talk more about our meds we'll be on. Friday- more tests. Monday- more tests. Tuesday-We will be admitted to the hospital to get his central line in and hopefully Weds- start Chemo- Nine days of that and then 10th day-TRANSPLANT!!!! We've been so busy, sorry I haven't written earlier but we just got discharged last night from hospital around 5 and then we were exhausted. Same thing today but I made myself come up anyways and let you guys know what's up.
Daddy and Mommy are already getting tired just from the first night home. We just haven't had any time to get our own routine down or HAVE a routine. We're hanging in there though. We'll try and keep you updated. Talk to you soon.-Lori and Degan

Saturday, June 7, 2003 1:34 PM CDT

****NEW INFO****
Sunday, June 8th ....Degan has arrived...check out new photos..Lori will update later.

NO baby yet! Wish he would hurry up and get here. They are talking about inducing if he's not here by the 16th. I'm really hoping that doesn't happen. Everything else is good here. We've been busy this week. We met my OB, the transplant team, toured the delivery /maturnity ward and the transplant unit(5200- that's what we'll probably referring to it as time goes on)
We are going down to where Dalton's family lives tomorrow with Kelly(our life saver) to see them and a few other families that are going there for a poker run. We're not going for the whole motorcycle thing but for everything afterwards. It'll be nice to see some of the families we met when we went to the symposium in 2000 and to meet some new families. We found out our room here at the Ronald Mcdonald house is right next door to Elijah but we haven't run into each other yet. Maybe we will soon-hopefully. I don't want to just go knock on the door. Anyways I won't rattle on for ever when there's nothing much going on but I will try to write a little bit more often. If not Jey will have to learn how to get on the computer and do it!! Take care and I love you and miss you all very much!-Lori

Tuesday, June 3, 2003 2:20 PM CDT

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