Journal History
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Wednesday, January 17, 2007 9:28 AM CST
Hello all,
Kyle is doing fine. We are trying to decide on the next thing to do for him. The doctors say that he either needs to have botox in his leg or to have achilles tendon surgery. We are totally against the botox, so that just leaves one option. We are going to try and get a second opinion. We are going to try going to a neurologist to see if it is all neurological, before we go the surgery route. Please pray that God would let us know what is the right thing to do.
The little boy that I mentioned last post, Tripp, is doing great. He ended up finding a 10 of 10 match in bone marrow, so they went that route. He is actually being released from the hospital today. He will be staying in Durham for at least another 1-2 months.
That is about all we have to update on.
Amber
Tuesday, September 12, 2006 7:00 AM CDT
Hello all,
Kyle is doing great!! I know that is has been over a year since I updated, sorry. Kyle is reading at a 2nd grade level and Ethan isn't that far behind him. That is about all we have been working on this year is learning the letter sounds and how to put them together. They are both doing well in Sunday School and Bible study, as well. His Physical Therapist is trying to see what they need to do about his brace. When he went to the man who makes the braces, he couldn't get Kyle's foot at a 90 degree angle, so he didn't know if it would benifit him to make the brace. So we are now waiting to see if there is a good orthopedic doctor in Hickory, if not then we will have to go to Winston, I guess. Well, I will update when we find out. There is the possibility of a casting series, where they will put him in a cast for a couple of weeks, the cut it off and then bend his foot up a little more and cast him... until it gets to a 90 degree angle. Then we can proceed with the brace again. Or they may say that he has to have surgery, which we are against. We will do everything else first, before they have to do surgery. Anyway, the boys are doing great and we are currently in the process of adoption. Yea@!! The boys are excited about getting a little sister. I am too!
That's about all,
Love to all and God Bless,
Amber
P.S. We have a friend that is getting ready to go through the stem-cell transplant. Tripp is a very special little boy, he and his family are wonderful. If you could just keep them in your prayers, that everything goes smoothly and that they have peace and calm throughout this whole adventure.
Monday, July 25, 2005 7:52 PM CDT
Hi all,
I know that it has been almost a year since we updated, but we are busy, busy, busy. We are getting ready to start homeschooling. We call our school, Lighthouse Christian Academy. We will be going back to Duke this September or October for Kyle's 6 year studies. I can't wait for everyone to see how well he is doing. Kyle has now lost, as of last night, 6 teeth. He has more money than us, LOL. That is about all for now, we are going to add some new pics in the next week, so check back.
Love to all,
Amber
Monday, August 16, 2004 7:53 PM CDT
Hello all,
I know it has been since January, sorry, but you know what they say... No news is good news, right? Well, we just took our first trip to the zoo. I am going to attempt to upload them on this site, so stay tuned. Kyle and Ethan are doing great. Kyle will be 5 years out of transplant on September 15th. I can't believe it has been that long, but then again, it seems like such a short time ago. We are planning to have a big party for him... and us. Well, that is about all. Ta Ta for Now
Amber
Friday, January 9, 2004 9:02 AM CST
Hi all,
I know it has been a while since we have updated the site, but we have been busy. We just bought a house over the holidays and moved too. We all had the flu over Christmas and had to stay home. No family dinners or anything. We had a great time though. The boys absolutely love the new house. This is the first house Ethan has lived in and the first one that Kyle will remember. It has a full basement and they share a room. We ripped up the carpet and there were hardwood floors underneath. They are gorgeous!!! Kyle is doing great, we have pulled him from school because it was hindering him more that helping him. We have completely pulled him from Physical Therapy. He does better with us anyway. Well that is about all.
Hope everyone had a great holiday,
Love ya,
Amber
Friday, June 20, 2003 10:42 AM CDT
Hello everyone,
Kyle is doing GREAT!! He is walking everywhere and talking up a storm. Ethan is the same way. Kyle had his first broken bone a couple of weeks ago. He fell and fell on his thumb and had a hairline fracture in the base of his thumb, He had to wear a splint on it for two weeks. It is better now. Hopefully when we get settled better in our new place we will put newer pictures in the photo gallery.
Well that is about all for now.
Love to all and God Bless,
Amber, Steve, Kyle and Ethan
Monday, November 04, 2002 at 08:51 AM (CST)
Well, Kyle turned 4 years old yesterday. I can't believe he is already 4. He is walking more and more on his own now. He, hopefully, will have his walker soon. Ethan is starting to talk more and not walking so much. He is still very health, no signs yet. Thank you, God!! Steve is suppose to post new pictures today or tomorrow.
Kyle can spell his name and "ball". He can say and identify the alphabet and count from 0-10. He loves to learn and is so very comfortable at prescool. He has all the girls fighting over him. Well that's about all for now.
Thanks for visiting, and God bless,
Amber
Friday, September 13, 2002 at 03:47 PM (CDT)
We went to the circus yesterday. Kyle got to ride an elephant... he absolutely loved it. He got to sit up front and pet her on the head. When we got inside he didn't take his eyes off of the performances. After a while, he wanted to sit by himself. So he got to sit in front of us on the bleachers. Then he wanted little brother with him. The whole time that Ethan was sitting there, he was poking him to get his attention and telling him to look at the animals and all the other action in the three rings. I think that Steve and I had more fun just watching our two boys. Kyle is doing great, still loving school.
We will be up in Durham on October 6th and 7th for his 3 year check up.
See ya later and God Bless,
Amber
Tuesday, August 20, 2002 at 02:49 PM (CDT)
Hi all,
Everything is going great! Kyle is loving being in pre-school, having a little brother, and walking. He can cruise the furniture and anything else that he can grab hold of. We will go next week and pick out a walker for him. Ethan has just started to pull up on everything. He said "mama" for the first time this morning. He already says "dada" and "baba". He can kinda say diaper. Well anyway. I guess we will be back in Durham mid-September for 3 year studies. We don't know exactly when, but we'll keep ya posted.
I guess that's about all.
Love to all and God Bless,
Amber
Thursday, July 18, 2002 at 06:31 PM (CDT)
Hello all,
I know it has been a while, but we've been busy, busy. Kyle is doing great! He can say his ABC's and 123's. He can also identify them. He can spell his name. He is abosolutly loving having a little brother. He is trying to show him everything. Ethan is almost 10 months old now. He is crawling all over the place and getting into everything. He loves to follow big brother around.
Kyle starts pre-school in 2 weeks. I think he will have a great time, it's me and Steve that I am worried about. We haven't left him any where for very long without one of us. I guess we'll just be the parents hanging around outside the classroom for a couple hours a day. HaHa!
Well that's about all on this end. More news later. We don't have to return to Durham till September. And so far so good with Ethan. Yeah
Love to all and God bless!!,
Amber Steve Kyle and Ethan
Wednesday, May 01, 2002 at 01:32 PM (CDT)
Hi all,
Hope everything is going well with everyone! Everything is great here. Kyle is almost walking now and Ethan is almost sitting by himself. My how fast they grow up!
Kyle got to go on his first plane ride(Daddy too!). We went to see my Grammy, in Maine. We all had a great time. They all(including Daddy) did great on the plane rides. Now listen how funny this schedule was... To get a good rate on tickets we had to have a connecting flight. The flight took us from Greensboro, NC to Cincinati, Kentucky then to Portland, ME our final destination. My Grammy lives about 20 minutes away. It was so beautiful up there.
The only thing that almost stopped us from going was ear infections. Ethan and I both got an ear infection two days before we were to leave, and I thought oh no now we won't be able to go. But the doctor said that everything was fine. Whew!!
Well love to all and God Bless,
Amber, Steve, Kyle and Ethan
P.S. Hopefully we will have up some new pictures in the next couple of days !)
Thursday February 14, 2002 4:14 PM CST
HAPPY VALENTINE'S DAY TO EVERYONE!!!!!
Kyle is doing great. He absolutly loves his new brother. He is all the time giving him hugs and kisses. If Ethan is crying, all he has to see is Kyle's face and he stops almost immediatly.
Ethan is getting sooo big. He is almost 15 pounds now. I can't believe how much both of them are growing. Kyle is just over 3 feet tall now and weighs in a almost 32 pounds. You'd never know that just over two years ago he was fighting for his life. He is almost walking. He can cruise the funiture and is now cruising the wall. Which is very surprising seeing as how he acts as if he will fall if he lets go of your hand(while waking).
Well that's about it, for now.
God Bless you all and good health,
Love,
Amber, Steve, Kyle and Ethan
Sunday, December 30, 2001 at 02:48 PM (CST)
Hope everyone had a good Christmas and has a wonderful New Year!! Kyle got to see his little brother get babtised today. Ethan cried a little bit, but for the most part, slept. When they were pouring the water into the babtismal font, Kyle was doing the sign for bath. Then when he got to where the candles were he was trying to blow them out. He was a very good boy.
We just entered a new photo in the photo album, please take a look.
Love to all,
Amber, Steve, Kyle and Ethan
Thursday, November 29, 2001 at 09:57 PM (CST)
Well, Hello everyone! Hope it was a happy and festive Thansgiving for all. I know we are truly blessed and have so much to be thankful for.
Kyle's checkup went great. We are on the One Year Plan now. Baby Ethan is doing just wonderful... eating like a horse and growing like a weed!
Sunday, October 14, 2001 at 01:36 PM (CDT)
Kyle has just become a big brother! Ethan Wayne was born Friday, Oct.5, 2001. Kyle loves his little brother,
it's KYLE'S baby! We have updated the photo page with pictures, so stop by and take a look.
Kyle has been doing very well. He has a brace for his right leg. The thought is that the brace will stretch the muscles
and help him learn to walk. He tries so hard but he can't seem to control his right side.
Speech therapy is going great. Kyle can say a lot more words and sounds.
We will be at Duke on Monday, October 22, 2001 for a checkup. Mom and little brother should be there as well.
Our prayers go out to everyone fighting battles. We read your web pages and we feel for you.
God bless.
Saturday, July 07, 2001 at 04:19 PM (CDT)
Hello everyone,
Sorry it's been so long since our last update, but it's been fairly busy. Since December, Kyle is almost walking. He is jabbering, ALOT. Oh yeah, he's going to be a big brother!
The new edition to the Mourglea clan will arrive, hopefully on time, October 12.
Kyle is still having PT, OT and has just started Speech Therapy. He is enjoying all of them, as all of his teachers are female. HaHa! He is such a flirt!!!
He is almost 30 pounds and is 34 and 1/2 inches tall. He eats like a horse.
We come back again, to Duke, towards the end of October. You know the usual stuff. 2-year check-up and all.
Wednesday, December 27, 2000 at 08:50 AM (CST)
Hi everyone,
Hope that everything went well over the holidays. Kyle had a great Christmas. He got a toy piano, a new chair for the livingroom (it is so cute. It is just his size and it is all cusiony and it rocks. He loves it.), $30 gift card to KB Toys, and a few other toys. We had such a good time watching him open his toys. His uncles came into town from Raliegh for Christmas. They brought him Fantasia 2000 and a Veggietales CD.
Kyle is improving a little at a time. He can now pick up his sippy cup and drink out of it, then set it down again without help. He crawls all over the place and he is starting to jabber. When he wants something that we have he just points at it. Usually, it is food that he is pointing at. He has finally reached 25 pounds.
Well I think that is about all. I hope that all of you are doing well and please leave us a message or send us an e-mail to let us know how you are.
Love to all and God Bless,
Amber, Steve and Kyle
Friday, November 17, 2000 at 06:48 PM (EST)
Well, we've finally uploaded new photos! Be sure to check them out. Daddy got some new software to play with, as you'll see.
Kyle celebrated his second birthday on November the 3rd. His big present was a Beagle puppie named "Charlie" and it has quickly become his constant companion and favorite platmate!
Kyle has started crawling now and resorts to his "commando crawl" on very rare occassions. He is eating mostly "big people" food nowadays. He doesn't want Daddy to leave the house without taking him! Their favorite places are Toys "R" Us and Lowes Hardware.
We are no longer on Gabapentin for seizures and thank God he hasn't had any! We are only taking the hydrocortizone tablets now.
We wish the best for all our friends and everyone at Duke. Hope all is going well for everyone and we wish everyone a joyous holiday season! Boy, it's hard to believe Christmas is right around the corner!
God bless,
Steve, Amber, Kyle, and Charlie
Friday, November 17, 2000 at 06:48 PM (EST)
Kyle celebrated his second birthday on November the 3rd. His big present was a Beagle puppie named "Charlie" and it has quickly become his constant companion and favorite platmate!
Kyle has started crawling now and resorts to his "commando crawl" on very rare occassions. He is eating mostly "big people" food nowadays. He doesn't want Daddy to leave the house without taking him! Their favorite places are Toys "R" Us and Lowes Hardware.
We are no longer on Gabapentin for seizures and thank God he hasn't had any! We are only taking the hydrocortizone tablets now.
We wish the best for all our friends and everyone at Duke. Hope all is going well for everyone and we wish everyone a joyous holiday season! Boy, it's hard to believe Christmas is right around the corner!
God bless,
Steve, Amber, Kyle, and Charlie
Tuesday, October 03, 2000 at 11:08 PM (CDT)
Wow! It's hard to believe our last journal entry was way back in June!
As always, our thoughts and prayers are with the kids, families, doctors and nurses on the BMT unit, and also with the friends we made during our stay. Thank God that we didn't see any familiar faces on the unit.
One Year studies went well. We heard the words that all BMT families wait to hear: "Take him home and treat him like a normal boy!" We had Acyclovir and Septra taken away. We are weaning off the Gabapentin for his seizures. And we are still on hydrocortizone tablets for Kyle's steroid level. Quite a long way from the first days out of the unit with a list of meds that were as long as your arm!
Kyle still has therapy twice a week with the goal of walking by Christmas. He has this sort of "commando" way of getting around. He gets up on his hands and knees, does a belly flop, rolls onto his back, kicks his legs around until he has them pointed in the direction he wants to go, then he sits up and starts the whole thing again! And he is so incredibly fast at it. He is already into everything and he hasn't even learned to walk yet!
His new favorite things are opening and closing doors, cabinets, boxes, and books, blowing kisses to mommy, turning in a complete circle while sitting in one spot, and his favorite thing of all is... PUPPIES!
He loves dogs and just laughs as hard as he can when they run and bark, especially if they run in his direction.
We promise to update the pictures very soon, so check back in a week or so!
Love,
Steve, Amber, and Kyle
Friday, June 23, 2000 at 09:01 AM (CDT)
Hi everyone,
I hope everybody is doing great!! Kyle is doing wonderful. Thank God!!! Two weeks ago he sat himself up for the first time since transplant. We are SO excited. Next step...crawling. If he wants to get anywhere now, he rolls. It funny, he rolls so fast. He is growing very fast. He has alot of hair. Hopefully, Steve will put Kyle's new pictures on. Dr. Martin took a couple of pictures of us at his nine month studies.
Speaking of nine month studies... they went pretty good. There were a few glitches with the schedule. Our clinic(4th floor) went very smooth and so did x-ray. But we had a problem with getting the PFT's before our echo. Oh, I'd love to have taken Steve's blood pressure after all of that!!! Boy! Well, Tuesday went alot better, he only had an MRI. Of course, they had to sedate. They did this at 11:00 and this is Kyle's normal nap time, so waking up afterword was hilarious. We were there an extra hour and a half just for him to wake up enough for them to let us go. We tried EVERYTHING!!! Well, that's about all. Please let us know how you are doing and sign the guest book.
Thanks and God bless!
Amber, Steve, and Kyle
Friday, May 19, 2000 at 03:38 PM (CDT)
Hi all,
Everything is going great! Kyle is getting to the point that he can get himself in a sitting position. We have found that he is lactose intolerant. We are giving him soy milk and followup formula. He is eating like a horse. We are so happy.
We will be back in Durham on June 18-20, for his 9 month studies. It is hard to believe that we are almost done with this.
Well that's about all,
Love to all and God bless,
Amber, Steve, and Kyle
Friday, April 28, 2000 at 09:06 AM (CDT)
Hi everyone,
Sorry it has been so long since our last entry. We have been very busy, changing diapers. Kyle some how got the rotovirus. It is a virus that gives you diarrea. His record was 8 diapers in a row, within 15-20 min. He has had this for 3 weeks now. Finally, he is getting over this. After he had it for about a week we took him to Winston for IVIG(this helps to boost his immune system). He seemed to get better for a couple of days and then it started all over again. So then he went on it by mouth for about 3 days. He is doing alot better now.
He is making real progress in his physical therapy. His therapist is really good, her name is Gina. He can sit by himself(if we sit him up). He has a new fav t.v. show...Teletubbies. He is such a funny boy. He is starting to interact with the t.v. shows. He laughs at them and talks to them.
Oh, I almost forgot. The MRI. The people never called us back with a time, so we will just have it in June for his 9 month studies.
Love to all and God Bless,
Amber
Wednesday, March 29, 2000 at 08:01 PM (CST)
Hi all,
We just returned from Durham. Kyle had his 6 month studies the past couple days. It went pretty well. He is just fine. We thought we'd be off of the steroids, but his level was rather low... so, it looks like another couple of months on it. That's okay. We went to his MRI appointment yesterday. He wasn't supposed to eat for 3-4 hours before hand since they have to sedate him. Well, for some reason he still had food on his stomach and he got sick right after they gave him the medicine(it was an oral sedation medicine). They ten gave him a little more, he fell asleep for about 30-45 minutes and then they were ready for us. As soon as he was put on the machine, he woke up and was wide awake. So now we have to go all the way back up there just for an MRI. That's okay, he is fine and it is just routine. It looks like I may have to take him by myself, unless Steve has the day off.
We are all doing fine. We don't have to go back to Durham for another 3 months. We still have to go to Winston once a month.
Well, that's all.
Love to all and God Bless,
Amber
P.S. Kyle finally broke 21 lbs. and he is 29 in. long.
Monday, March 20, 2000 at 06:33 PM (CST)
Hi everyone,
Kyle is doing pretty good. We got back home on the 7th or 8th, I don't remember. The staph is gone. Another one bites the dust!!!
Kyle actually slept in his crib on the night of the 14th. This is the first time in a long time Steve and I haven't had to share the bed. Not that we mind, but the bed is only so big. Well, he woke up on Wed. the 15th with a fever. We went directly to Duke. They did cultures and bloodwork. We stayed at the University Inn for 2 nights. We left Friday because nothing grew, THANK GOD!! We guess he has a little cold or is teething.
We go back again on the 26th for his 6th month studies. But before that Steve is going to a church lock-in for the 7th and 8th graders. I think he will have a really good time(their about the same mentallity, HaHa).
Well that's about all from the homefront. Sorry that it has been forever since our last message, but just as soon as we get settled in, we have to pack it back up and leave.
Love to all and God Bless,
Amber, Steve, and Kyle
Thursday, February 24, 2000 at 03:23 PM (CST)
Hi all,
Kyle had clinic this morning and we were actually out of there before 10:00. We were shocked. Normal clinic days are atleast until lunch if not longer(arriving at 8am). Well, we came home, took a little nap and then went to Occupational Therapy. He did so well. He was doing a little better after the 2 hour session. They are trying to help us to help him learn to drink again.
That's about everything. Love to all and God Bless,
Amber, Steve, and Kyle
Tuesday, February 22, 2000 at 04:20 PM (CST)
Well we are still here. He is still on Vencomyacin. Dr. Martin said that hopefully we'd get to go home in a week or two. (I'm not gonna hold my breath) Don't get me wrong, I'd love to go home, but about the time I get my hopes up something else will keep us here. You know how that goes. Kyle is such a mess. He has started a new thing where will get himself tickled. He will just start smiling all of a sudden at something he is playing with or watching on t.v. It is the cutest thing. Well that's about all from here.
Love to all and God Bless,
Amber
Saturday, February 19, 2000 at 11:35 AM (CST)
Hello all,
Well we are still here. It looks as if we will be here a while. They don't know how long, so they set us up at the Ronald McDonald House. We are in one of the Bone Marrow Transplant Suites. Our number is (919) 286-9305 ext. 157.
Kyle is doing pretty good. We think he may have had a partial seizure this morning. We are up here on the unit being looked at.
It turns out that that contaminant(sp) I wrote about last time wasn't at all. He has yet another staph infection. Luckily we don't have to be in the hospital. I can give him his medicines in the room.
Please pray for all the children up on the unit. Esp. for the 5 transplant kids in the PICU.
Love to all and God Bless,
Amber, Steve and Kyle
Monday, February 14, 2000 at 06:18 PM (CST)
HAPPY VALENTINE'S DAY!!!
Well we are getting out of here tonight. It turns out that the culture was contaminated. He is just fine!!! Yeah!!!
Well will write more later, we are trying to get out of here.
Love to all and God Bless,
Amber
Sunday, February 13, 2000 at 09:40 PM (CST)
Well... here we are... back in the hospital. They think it may be another staph infection. The cultures that they drew finally grew something, but they are not definite yet. They are drawing more cultures tonight and it looks as though we will be here a while. At least another week or two. Oh yeah!!
Well, at least we can be thankful that we were across the street rather than three hours away. I am thankful for that.
More news as we get it...
Love to all and God Bless,
Amber
Sunday, February 13, 2000 at 11:01 AM (CST)
Kyle has some kind of cold going on. We came to clinic from Conover on Monday, spent all day Monday in clinic, were sent by ambulance to P.I.C.U. at about 8pm on Monday night, spent Monday night and Tuesday night in P.I.C.U. and were released as outpatients Wednesday afternoon. We've been staying at the University Inn acrross the street from the hospital. Wednesday night we noticed Kyle had started to cough a little... just a dry cough. It became more pronounced Thursday night and Friday. He started running a 100.4 temp. on Friday. Yesterday his cough sounded like he had some congestion. His nose started running. He didn't sleep well last night. They've taken cultures to see if anything grows.
The high FK-506, potassium and creatinine levels are pretty much in check now. So, just to keep things interesting, Kyle's albumine and calcium levels have dropped and we've needed to have calcium and albumine through IV.
Looks like we're going to be here a good part of next week until this cold thing runs its course and they can figure out what's going on with his chemistry.
Saturday, February 12, 2000 at 10:42 AM (CST)
Hi all,
Kyle is doing better. We have to stay here for another week or so. They still are trying to get his chemistries back to normal. His Calcium was low this morning... his hemaglobin was low too. He is wating for a transfusion. Boy, we haven't had to have one of these for a while.
He started coughing pretty good last night and he was running a fever of 99.4 (under the arm, so it was really 100.4) They are running some blood cultures because of these symtoms. Hopefully, it will be for nothing. More info later...
Love to all and God Bless,
Amber,Steve and Kyle
Wednesday, February 09, 2000 at 07:53 AM (CST)
Hopefully we will be out of the hospital today. We are staying at the University Inn. The number (919) 286-4421 room #403. He is doing alot better and they are rounding on him right now.
We called to check on him this morning and the nurse said that he was awake the most part of the night watching T.V. That's our little couch potato! HaHa!!
Steve went home to get some more stuff for us and he brought himself another hat, so he doesn't have hat hair today(at least where you can see it!!) Ha Ha!
Love to all and God Bless,
Amber, Steve, and Kyle
Tuesday, February 08, 2000 at 08:08 AM (CST)
Well... It seems as though "boredom" is just not in Kyle's vocabulary. Things have been rather quiet until now. We are back at Duke. Spent last night in PICU. His potassium and creatine levels were sky high, putting his heart and kidneys at risk. Meds brought the levels down during the night and we should be moved from PICU to a room most likely in the 5100 section. Still no definitive word on what caused his chemistries to get so far out of whack.
Kyle's favorite toy this time around? Daddy's NY Yankee cap. That's okay... I have to go around with a bad case of hat hair... the pointing... the taunting and snickering... the laughing behind my back... the object of scorn and ridicule...
Amber says it's all on my head... er, in my head. More news as it becomes available.
Sunday, January 30, 2000 at 02:23 PM (CST)
Kyle is doing VERY well. We went to the doctor in Durham last Monday, and we have great news!! We have been going atleast every week to either Winston or to Duke. They have skipped the two week visits, because he is doing so well. We go back to Winston at the end of February and then back to Duke at the end of March for his 6 month studies. We will be there for a couple days. They have to check his heart, lungs and brain. It's hard to believe that we are already almost half way through this thing.
Well that's about all... until next time,
God Bless all of you!
Amber, Steve, and Kyle
Tuesday, January 18, 2000 at 03:44 PM (CST)
Hi,
Sorry it has been so long since the last entry. We have been getting settled in. We STILL don't have everything put away. It's a good thing Kyle sleeps with us, his room is sooo full of all the wonderful gifts he has recieved. We are going to have to get rid of one of our guest bedroom just to make him a playroom. That's okay, I think it will be cool to have a playroom in the house.
Kyle is doing extreamly well and is sitting more and more on his own. Hopefully, he will be beck up to speed by this summer. I can't wait to see him walk again. During the day, bathtime and eating time are his favorite activities.(Unless Daddy's home, then he wants to play)
Well that's about all I have to report.
Love to all and God Bless,
Amber, Steve and Kyle
Thursday, December 30, 1999 at 05:44 PM (CST)
Hey everyone,
We have finally made it to the light at the end of the tunnel. We get to go home tomorrow. Yeah!!! Kyle is doing well. VERY well!!! I can't believe how much stuff we have accumulated in 3 months. Steve has already taken a packed car back and we still have alot of stuff left. Hopefully we will have enough room for us three in there too. HaHa! Well I hope that everyone has a wonderful New Years!
Love to all and God Bless,
Amber, Steve and Kyle
Monday, December 20, 1999 at 05:14 PM (CST)
Well I got back from Hickory alright. Kyle got out of surgery okay. He is sleeping right now. They think that they got it in too far, so there is a possibility that he may have to go back in and have it fixed. Pray that he doesn't... how many times do we want to tempt fate? He has already, counting today, been in surgery 9 times. He is doing good though. He is still laughing and playing.
Hopefully everything is fine and we will be out of here by tomorrow afternoon. We are going to decorate the tree and play Christmas music. Kyle has alot of presents under the tree, this year. I would like to thank everyone that helped to make this a wonderful Christmas for him and us.
That's about all...
Love to all and Merry Christmas,
Amber, Steve, and Kyle
Sunday, December 19, 1999 at 11:44 AM (CST)
Kyle is eating very well now. Tonight is his last night on the TPN. Steve said that he ate a whole jar of pears this morning at 10am. Mom and I are at the house getting it cleaned for when we get to come home for good. Boy, it wasn't a pretty site, let me tell ya. But, when mom and I got through with it... it looks great!!
Well that's about all I have from this end. Hopefully, Steve will write some.
Love to all and Merry Christmas,
Amber
Saturday, December 18, 1999 at 10:09 AM (CST)
Kyle goes in for his port on Monday at 9am. If all goes weel we should be out of the hospital on Tuesday. Just in time for Christmas. We got some good news today... Kyle is being weened off of his TPN and Lipids. We will go home on no IV medicines. Yeah!!!!!!!!!
Kyle says,"HEY".
That's about all,
God Bless and Merry Christmas.
Amber and Kyle
Friday, December 17, 1999 at 11:08 AM (CST)
Well it looks as though we will be out of here by Christmas. We still won't be able to come home(conover) for the holidays, but at least we won't be here!
They did part of his hundred day studies yesterday. He had an eckocardiogram done and it came back abnormal. Because of the steroids, his heart is swollen. It makes it harder for the blood to pump through it. They say it is a mild case and that they are going to take him off of the steroids. They will put him on a medicine that will do the same thing that the steroids do. It will get better.
That's about all I have for now.
Love to all and God Bless,
Amber and Kyle
Monday, December 13, 1999 at 06:05 PM (CST)
Kyle is back from surgery. He is just fine. He is now sleeping with the help of his friend "Mr. Morphine"...Haha. We will be here in the hospital until the middle of next week. We just found that out today. Hopefully we won't be spending Christmas in the hospital.
Steve figured out why we didn't have water at the house(Conover). The water tank was busted. We had to buy a new one. He has spent all day today trying to fix it and all he has accomplished as of 7:00pm is getting it out from under the house. Hopefully, putting one in isn't as complicated as taking it out. He is such a Mr. Fix-it. Not that that's a bad thing...it saves us alot of money.
Well that's about all...
Love to all and God Bless,
Amber and Kyle
Sunday, December 12, 1999 at 02:33 PM (CST)
Hi all,
Kyle is doing well today. He is sitting in his Daddy's lap and watching White Christmas. He is a little fussy, but he is teething. His ninth tooth is coming in. It is one of his bottom teeth. We go to surgery tomorrow... sometime. Since we are inpatient, they don't really have us a certian time. We just get thrown in where ever they have a spot. Hopefully, Kyle will not have to go all day without eating again. He is just starting to eat good. He ate 10 ounces yesterday. That is his alltime post-transplant record.
I hope that everyone has a very Merry Christmas and a Happy New Year.
Love to all and God Bless,
Steve, Amber and Kyle
Friday, December 10, 1999 at 12:53 PM (CST)
The doctors have come in today and said that it IS the same infection we thought we had gotten rid of. So there is NO option but to take out the port and put in a temporary access. Well I guess we will not be coming home for the holidays. We at least won't be in the hospital for the holidays. It looks like we will not be home until sometime in January.
Kyle is eating alot better. Yeah!!! Hopefully we will be off of the TPN and Lipids by the time we leave the hospital. That would be nice.
Well, we will miss you all this Christmas...
Have a Merry Christmas and a Happy New Year!!!!!
Love to all and God Bless,
Amber, Steve, and Kyle
Thursday, December 09, 1999 at 09:33 PM (CST)
They took the double lumin out today and Kyle did fine. He is a little fussy, probably from the pain. He doesn't want daddy to put him down for a second.
The decision to leave the port in worries me. We are still waiting to see if this staph infection is the same as he had before or if this is a new infection. We should know tomorrow.
How did he get a staph infection to begin with? He was perfectly fine until we had that port put in. We noticed and reported a red coloration in his skin running from the port site up his chest to his collarbone. It is one of the things we are suppossed to look for as a possible sign of infection. The surgeons looked at it and said it was fine. We went home and finished a course of antibiotics. About 4 days after the antibiotics stop we are back in the hospital with another infection. Hmmm...
That is what worries me about leaving the port in. If it is the cause of the infection we could wind up back in the hospital again. How many more of these infections can Kyle fight back from?
If we take the port out, then we will have to go back into surgery twice, once to pull out the port and then again about a week later to put in another access... presumably another port, I don't know. Anyway, we will be in the hospital until that new access gets put in. The thought of going back into surgery even once more scares me immeasurably... I don't have any confidence after this past escapade. But the thought of leaving a possibly contaminated port in and the infections continuing scares me just a little more.
I think taking the port out is the way to go, and I pray that God watches over Kyle and pulls him through once again.
We signed up for a little boredom and some peace and quiet! If any of you have received it by mistake, please return it to us. Thus ends this mini-novel journal entry.
Thursday, December 09, 1999 at 01:07 PM (CST)
It seems like Kyle is battling another staph infection. They are going to pull out his double lumin today around 4pm. They are trying to keep from taking Kyle into surgery if at all possible, and leave the port in for now. The past two surgeries have not gone very well for us so we are all for avoiding it if possible.
Still no word on whether this will change our time table for going home to Conover. Right now it seems there is time to get this cleared up and have a period where he can be observed and still let us go home. I think that, if he has any more trouble, they will not let us go home as early. Better safe than sorry!
It is an unsettling thought to realize how fast things can go from well to disasterous... things change in a matter of a couple of hours. Sometimes a few minutes makes all the difference.
We thank God for watching over and protecting Kyle. For the first time, we have heard a doctor use the words "he's a miracle." God has been our strength and most importantly he has been Kyle's strength. None of us could have made it through this ordeal on our own. We especially want to thank each and every person for their prayers. They do work!
Wednesday, December 08, 1999 at 04:01 PM (CST)
We are up playing today!!!
He is getting better by the day. They say that SOMETHING is gowing,but they don't know what it is yet. Hopefully, we will know something by this evening or at least by tomorrow morning. Well that's about all the info that I have today, so far...
Love to all and God Bless,
Amber
Tuesday, December 07, 1999 at 06:18 PM (CST)
Well, everything is alot better than it was last night. Kyle went to PICU for about 8 hours(just for monitoring). He is now back over here in the Bone Marrow Unit. He went over to the PICU at 3:00am and came back over here at 11:00am. Hopefully, this will not hinder us coming home for the holidays.
They said if it was another staph infection, that they would more than likely take out his portacathider(sp?). They think that is the culprit. They are giving him Vencomyicin, Tobramyicin, and Cytoxin. They are the broad spectrum antibiotics.
He is laughing and jabbering all over the place tonight. They are pleased with how well he is progressing. but, we're not out of the woods yet, so please keep the prayers coming!
Thanks, Merry Christmas and God Bless!!
Steve, Amber and Kyle
Monday, December 06, 1999 at 11:34 PM (CST)
Well...
Here we go again. Things were going so well and Kyle was feeling so great! He has been talking up a storm the past couple of days, but especially today.
We had clinic today and everything was great. Kyle had IVIG today. He went to sleep on the way home and woke up a little fussy. About 2 hours later his fever jumped to 101.8 and his breathing became labored. Now we are back in the hospital, room 5205. They are giving him the broad-spectrum antibiotics again until they can determine what they are treating.
Kyle is behaving differently than he was the last time we had an infection. He is still laboring to breathe even though his lungs sound clear. He seems to be in more than a little pain. His stomach is upset... he has thrown up twice in the past 3 hours. The last time we noticed a night and day difference within 4 hours. Not so this time. More news as it becomes available to us.
Saturday, December 04, 1999 at 09:03 AM (CST)
Hello,
Sorry we haven't written in a while. Kyle is doing very well. We got to leave the hospital on Tuesday the 23. His infection is gone and he is laughing and playing all the time. He loves to talk(I wonder which side of the family he gets that from?). Haha!
The physical therapist said that he is doing alot better. He is on the right road to crawling. Hopefully by Christmas.
Well we need to get going. I can't wait to see everyone at the Christmas Eve service. Either I or Steve will be there. Kyle is not able to be out in big crowds yet. He has to stay out of them for at least a year.
Love to all and God Bless,
Amber, Steve and Kyle
Monday, November 22, 1999 at 11:58 AM (CST)
Hi all,
Kyle is doing much, much better!! When we got here on Thursday morning they were talking about putting him in the PICU(pediatric intensive care unit), but in a matter of hours he was doing alot better than they thought he would. We are okay enough to be over here on the unit. We are in room 5202.
They got the blood cultures back yesterday and it was a staph infection in his blood. They keep telling us that from looking at him, it doesn't look like he should be here. Not to say that he isn't a very sick little boy, though. Thank God he had enough white cells to help fight this infection! Praise the Lord!!
On a lighter note....
I have been here with Kyle since we got here and Steve went home to feed the cats and check the mail. Kyle slept VERY restlessly the entire time that Steve was gone. Steve got here and he hasn't quit smiling, and he slept all the way through the night(of course, Steve stayed last night). Well, needless to say, Steve will be staying the rest of the nights that we are here!(HAHAHAHAHAHA) Just kidding, but he will stay for a couple more nights while I catch up on my sleep.
We appreciate all of the prayers from everyone and ask that you please remember Kevin Hagen(who is in PICU) and the rest of the kids and families up in on the unit.
Thank you and God Bless,
Amber
Thursday, November 18, 1999 at 08:12 AM (CST)
Well they think that Kyle has a blood infection. They have given him all the antibiotics know to man. They said that we caught it pretty quick. We will be in the hospital for a while now. Definitely no coming home for Thanksgiving.
Keep us in your prayers,
Love to all and God Bless,
Amber
Sunday, November 14, 1999 at 09:28 AM (CST)
Kyle is doing well. He rolled over twice Friday. He is having to get FK506 levels drawn from both lines, because his FK levels are high. It is possible that both lines have been cantaminated. His single line is gone.(Long story)! Anyway, he is having to have blood drawn from his arm too. Hopefully, one of his lines is okay. If not, they will have to draw from his arm every time for his FK level.
More news later,
Love to all and God Bless,
Amber
Friday, November 12, 1999 at 07:48 PM
Hello everyone!
Sorry we haven't updated the site in a while.
Kyle is doing great! The physical therapy is going well... but it's going to be a long process. Kyle has not had to have a transfusion since he left the hospital!
KEEP YOUR FINGERS CROSSED...
We hope to get a weekend pass for Thanksgiving. It would be nice for Amber and Kyle to see their home for the first time in over two months!
Friday, October 29, 1999 at 05:36 PM (CDT)
Happy Halloween!! Hope everyone is doing well. We are doing great! We are having car problems, but hopefully we will have that solved by Monday or Tuesday. Kyle is doing wonderful. He is getting alot stronger everyday. He is trying to roll over, so we work on that alot.
That's about everything,
Love to all and God Bless,
Amber
Tuesday, October 26, 1999 at 01:44 PM (CDT)
Tomorrow is the BIG DAY!!!! Kyle is helping me to type this entry. Steve should be here in a little while. I will take the last little bit of stuff to the apartment tonight. We will leave in the afternoon tomorrow. They are all impressed at how well he is doing this soon after PICU. To give you an idea at well he is doing... they see the worst patients first and the best ones last... They see him last!
Love to all and God Bless,
Amber
Sunday, October 24, 1999 at 03:50 PM (CDT)
Hi ya'll,
Kyle is doing very well. We just returned from a 4 hour pass. Mom and John came for a visit and we went to the apartment. We ate lunch and all ended up falling asleep. We took about a 45 minute nap and then came back to the hospital. We have been back for a little over an hour, and he is back asleep. He is wore out! Well we had a good time.
They are talking about us getting out of here by Wednesday. I can't wait!!
Love to all and God Bless,
Amber
Friday, October 22, 1999 at 07:46 PM (CDT)
He will not sleep at night!! I am going out of my mind. He is doing well, but he's got his schedule mixed up. I will try to get him back on schedule by the time we go to the apartment. They are going to up his GCSF(the growth factor). He will eventually go off of this, after his counts stablilize on their own. So, it's not a bad thing. They are getting me prepared for leaving and administering drugs to him myself. It's not all that difficult. I'm not worried.
That's about all,
Love to all and God Bless,
Amber
Thursday, October 21, 1999 at 11:10 AM (CDT)
!!!! KEEP YOUR FINGERS CROSSED !!!!
If all goes well, we could be released as out patients sometime next week! YEAH!!!!
Bam-Bam is doing very well. After coming out of the coma, he is for all intents and purposes starting over as a newborn. He can lift his head up when he is lying on his stomach, so he still has some of his old strength, but it's as if he doesn't remember how to use the muscles. He can't roll over or sit himself up, and he can't sit upright on his own or stand up. He is just starting to take a couple bites of food from the spoon and swallow it. Imagine a newborn without the natural instinct to suckle, that's where he is starting at.
Just last night, he reached for my hands to pull him up! Amber says that's the first time he has done that since the coma. It's part of his favorite game of olden times - sit-up, stand-up. This morning he will reach for your hands every time you offer them. His hands are still in the splints to straighten and stretch his muscles and ligaments. The physical therapists are say we are talking months instead of days or weeks concerning the recovery of his hands.
So, it looks like we will be moving Kyle to the Durham apartment sometime next week. Please e-mail us if you would like the phone number. We would like to thank everyone for the prayers and support. We would especially like to thank Pastor Jim and Pastor Harold and everyone at Mt. Zion for all of their help and support, Dianne Alexander for the fundraiser her church is sponsering, Kevin O'Brien and everyone at Barnes & Noble - the greatest organization in the world, and the folks at Hickory News for the article they did on Kyle.
Wednesday, October 20, 1999 at 10:54 AM (CDT)
We get to go the the apartment next week!!!!!!!!!!!!!!!
I'm sooo excited! Kyle is doing so well. So many kids are getting to go home in the next week or so; It's such a blessing. We are all so happy up here.
We got a 2 hour pass last night. We roamed the hall for about an hour and Kyle decided he wanted to fall asleep. So we sat in the room and he fell asleep on my chest. It was so wonderful not to be hooked up.
Well, that's about all,
Love to all and God Bless!
Amber
Monday, October 18, 1999 at 06:42 PM (CDT)
Kyle has had more movement in his arms. Dr. Martin said possibly next week we can go to the apartment. YEAH!!!!!!
Keep those prayers in!!
Love to all and God Bless,
Amber
Sunday, October 17, 1999 at 03:14 PM (CDT)
He is doing well today!! He is starting to get hungry. They are feeding him through his med tube. He finally went to sleep. He had a big day! His great-mimaw and great-papaw came to visit today. His grandma and grandpa Fix came also.
White count is still up there...15.6.
Love to all and God Bless,
Amber
Friday, October 15, 1999 at 04:49 PM (CDT)
Today's count is 18.0. They are going to possibly going to give us 1 hour passes next week!! This is the first step in getting out of the hospital. Yeah!!!
That's about all the news I have today. It's a pretty calm day.(but that's a good thing!)
Love to all and God Bless,
Amber
Thursday, October 14, 1999 at 12:03 PM (CDT)
Kyle is doing lots better. We played and watched Barney this morning. He was laughing and smiling. He's getting back ot his old self again.
If you would like to e-mail me, you can do so at: javajanekool@yahoo.com
Love to all and God Bless,
Amber
Wednesday, October 13, 1999 at 09:25 PM (CDT)
Gave Kyle a REALLY good bath today. He pitched a fit. He cried and cried until he wore himself out! He has been off-and-on asleep for about 3 hours. He sat on his own today!!!! I sat him up, and he held his own for a couple of minutes. That is very good. The doctors seem very pleased at how fast he is getting better.
I am hoping, that by Thanksgiving, he will be well enough for us to come home for a visit. If not, we will see all of you around Christmas.
That is all for now...
Love to all and God Bless,
Amber
Tuesday, October 12, 1999 at 10:55 PM (CDT)
Kyle's counts are up to 9.9 today. He got his medicine tube out today... well, he pulled it out last night(don't worry, it didn't hurt him). He did't sleep that much today. Maybe and hour or so. Hopefully, he will sleep well tonight.
Dr. Martin said that two weeks would be a relistic goal for us getting out of here.
Love to all and God Bless,
Amber
Sunday, October 10, 1999 at 02:37 PM (CDT)
Kyle is sleeping alot better. Steve asked them to give him some lasex last night. He had a major diaper shortly afterward. They had to give him a bath, because he messed all over himself and the bed. They mesured his belly and it had gone down 2 cm. since yesterday.
Hopefully they will have him off of the medicine tube, in his nose, by Tuesday. then he will be mobile on the unit.
They said that it will probably be another two or three weeks before we get to leave.
love to all and God bless
amber
Saturday, October 09, 1999 at 10:58 PM (CDT)
Well, it's about 12 midnight eastern time. Kyle is a little fussy tonight, his stomach seems to be hurting. They have taken off the oxygen mask and gone to the "nose thingy" as mommy puts it. The amount of oxygen is almost nothing! They are surprised by how quickly he seems to be recovering after being taken off the ventilator. He can actually cry today, though it still sounds "raspy." After two weeks of silence, it's the greatest sound in the world!
No transfusions today!
White cell count today is 7.4
Saturday, October 09, 1999 at 01:04 PM (CDT)
We're off of the oxygen mask!!! They just have the nose thing on him now. They said that he is doing well enough that they will probably take him off of it today.
His white count is 7.4. His is doing very well!! The doctors are very impressed.
Love to all and God Bless,
Amber
Friday, October 08, 1999 at 01:27 PM (CDT)
We're at 6.5 today.
We're back over in the BMT unit!!!! Yeah!!!
We are soooo excited. He is still on an oxygen mask, but that's okay.
That's about all.
Love to all and God Bless,
Amber
Thursday, October 07, 1999 at 02:08 PM (CDT)
We are at 6.6 today.
WE ARE OFF OF THE VENTILATOR!!!!!! They unhooked him about an hour ago. He is doing well. They have an oxygen mask on him. Hopefully, he will be back over in here by this evening. I can't wait to hold him again.
More updates later!!!
Love to all and God Bless,
amber
Wednesday, October 06, 1999 at 07:16 PM (CDT)
I'd like to thank WELCA of Mt.Zion for the phone cards. They are very much appreciated. They will go to great use!
We have an apartment now. The phone number is (919) 401-1960.
Our room phone number is (919) 681-5209.
Hopefully, we'll be back in our room by the weekend.
Love to all and God bless,
Amber
Wednesday, October 06, 1999 at 01:29 PM (CDT)
Kyle's white count is 4.7. They are talking that if he keeps doing as well as he is, they will get him off of the machine in a couple of days.
Thank you all for all of your thaughts and prayers. Steve and I appreciate all of your notes on the website.
Can't wait to be home with you all once again!!
Love to all and God Bless,
Amber
Monday, October 04, 1999 at 08:54 AM (CDT)
Kyle is at 2.7 today. He is doing okay. The reason that he is still on the vent is that when you engraft, the blood vessels leak fluid. So, his lungs are retaining this leaked fluid and making it harder for him to breath on his own. They are giving him lots of lasiks today. They call it pruning him (in other words, dry him out). Hopefully, he will be back over here by the end of the week.
Love to all and God Bless,
amber
Sunday, October 03, 1999 at 11:41 AM (CDT)
Kyle is at 1.8 today. They probably won't take him off the vent today or tomorrow. He doesn't act as if he's ready. Well, other than that, he is doing fine.
Love to all and God Bless,
Amber
Saturday, October 02, 1999 at 08:46 AM (CDT)
We aren't neutropenic today!!!! Our white count is 1.4. We are having a little problem with getting off of the machine. They turned all of his sedation off and he coughed alot. They had to do some suctioning and he started to bleed a little. Nothing to worry about. He may just take a day or two more to get back over here.
Love to all and God Bless,
amber
Friday, October 01, 1999 at 10:37 AM (CDT)
Kyle is at 1.0 today. They are trying to wean him off of the ventilator by Sunday. I can't wait!!
Other than that, everything is going great. If you are in Hickory and can get a copy of the Hickory News, there is an article about Kyle in the medical section. I have heard that it is very good.
Love to all and God Bless,
Amber
Thursday, September 30, 1999 at 07:52 PM (CDT)
Happy Anniversary to us!! Kyle gave us the most valuable gift, He opened his eyes all the way today. Yesterday they were barely opened, but today he was awake for alot of the day. The nurse said that when she gave him his bath,tonight, he was pretty much wide awake. They had to up his sedation because of it.
They hope to do an MRI Monday or Tuesday. Hopefully he will be better by then and be coming back over here by mid to end of the week.
When they checked his counts this morning he was still at .6; When they checked them this evening his count is .7. Yeah!!!!
GROW CELLS GROW!!!!!!!:)
Love to all and God Bless
Amber
Wednesday, September 29, 1999 at 10:09 PM (CDT)
Kyle opened his eyes today!!!
He has been in P.I.C.U. since last Wednesday, when he opened his eyes briefly, but he seemed to respond to our voices and look around for us.
They still have no idea what is causing the neurological abnormalities, but we hope this means that the neurological problems are halting and maybe reversing.
Tuesday, September 28, 1999 at 11:30 AM (CDT)
Well... the waiting game continues.
Kyle is glowing red today from head to toe! Looks like his transplant is grafting!!!!!!
Everyone now agrees there is something on the MRI, but no one knows the cause... no cause, no treatment. The skin rash has cleared up for the most part and, of course, the biopsy of the rash isn't back yet.
Kyle is still on the ventilator. They are talking about getting him off by the end of the week. They have switched from Cyclosporin to FK506 in case Kyle is having a reaction to it. We are also getting IVIG today. That helps to fight infection. All of these problems started last week after he got the IVIG infusion. Although I expressed concern, the doctors don't believe he is having a reaction to IVIG.
Sunday, September 26, 1999 at 01:32 PM (CDT)
Okay, you guys may want to sit down for this one! We're at .7 today. Yeah !!!!!!!
He is still fdoing about the same and they are running another set of the same tests to see if they missed anything.
They are reviewing the MRI and CT scan to finally make sure if there is a problem or not.
We will keep you posted!
Love to all and God Bless,
Amber
Saturday, September 25, 1999 at 09:44 AM (CDT)
WE'RE AT .2!!!!!!!!That is very good. That means that his white cells are growing and multiplying. It's ALIVE!!!! They are weaning him off of the ventilator today. Hopefully, we will be off of the machine tomorrow.
We still don't know why he was having problems. His rash is getting a little better. The MRI results came back negative. Yeah!!! The skin biopsy will be back sometime soon.
That's about all. Stay tuned. Same kyletime, Same kylechannel!!
Love to all and God Bless,
Amber and Steve
Friday, September 24, 1999 at 08:10 PM (CDT)
We still have no answers about why Kyle is the way he is. They are testing for alot of stuff. He went for his 2nd MRI today. They don't have the results of it yet. We will write more later when we have any info.
Love to all
and God Bless,
Amber
Thursday, September 23, 1999 at 02:09 PM (CDT)
The CT scan showed a little bit of something, but not enough to be alarmed over. They are getting ready to do a LP(spinal tap). They will do a MRI later on today or night. We will probably know more tomorrow, if not tonight(late).
Love to all,
Amber
Thursday, September 23, 1999 at 06:37 AM (CDT)
Kyle has been taken to the Pediatric Intensive Care Unit(PICU). He is okay. They are getting him stable as I write this. They are going to do a CT scan and an EEG today to check his brain out. He has been very lathargic the past two days.
But, don't worry, he comes from good stock. Fighters. He is a decendent of the Greatest fighter to ever live!!! GOD!! God doesn't give up his fight for us, so why should Kyle give up his fight. He has the best of people and doctors to take care of him. Most of all he has ALL of God's angels watching out for him.
More information later when I get it.
Love to all and God Bless!!
Amber
Tuesday, September 21, 1999 at 06:25 PM (CDT)
If you would like to send me an e-mail, feel free. The address is:
javajanekool@yahoo.com
Amber
Tuesday, September 21, 1999 at 06:16 PM (CDT)
Kyle had his line replaced today. He was scheduled to go down at 12:30pm. As usual, they got there late to get him. They took us down at 1:30pm. We sat in the little pre-op room for an hour and a half. 3:00pm they took him in, and in 30 minutes he was done. He had a little trouble with his respiration afterward. They have him on a little moisturized oxygen. His breathing is just fine. They have had everyone up to check on him. They are very thourough here. I'm very thankful of that.
Well that's about all.
Love to everyone on day #6,
Amber and Kyle
Saturday, September 18, 1999 at 04:36 PM (CDT)
Hi,
Kyle has pulled his single line out. They will put it beck in on Tuesday. I don't know what time. They have put him on a pain pump. He itches alot from his rash. I think that he is a little uncomfortable. I don't know what from, but they say that it is not uncommon.
We made our first venture out of the room today. He actually will wear the blue mask. He doesn't like the yellow one, but the blue one conformes. It stays on alot better. I think that he likes to get out of the room. We may go sit on our front porch. (Outside our door).
Well that's all,
Love ya'll
and God Bless
Amber
Thursday, September 16, 1999 at 09:41 PM (CDT)
Hello all,
Kyle is doing preety good. He still has no fever. He has slept alot today. His rash is going away, slowly but surely.
That's about all.
Love ya,
Amber
P.S. If anyone would like to call me, here is the number: (919) 681-5209
Wednesday, September 15, 1999 at 04:48 PM (CDT)
TRANSPLANT IS DONE!!!!!!!!
The cord blood transfusion has just finished at 5:40pm. Now begins the waiting game to see if the transplant takes.
The transplant was moved up because hurricane Floyd is supposed to pass through this area. They don't know if anyone will be able to make it to work tomorrow so they went ahead and did it today!
Wednesday, September 15, 1999 at 07:40 AM (CDT)
Kyle started to run a fever last night, early this morning. He is still sleeping alot. The hurricane is coming! It will pass right through us.
Well that is about all that I have to report for now. I'll probably be back Later today.
Love,
Amber
Tuesday, September 14, 1999 at 10:52 AM (CDT)
Hi all,
Kyle is doing well. His first day of ATG went well. He didn't get a fever. This morning we noticed a slight rash. That is normal. Nothing to worry about. He loves playing with the mobile he has. It is a Noah's Ark mobile. It has a zebra, lion, giraffe, and an elephant. He likes the giraffe best.
That's about all. We just hope that the hurricane doesn't hit too hard. We could use the rain though.
Love ya,
Amber
Sunday, September 12, 1999 at 11:17 AM (CDT)
Kyle is doing well, today. Steve is here today!! Yeah!!!! Kyle is doing better with this form of chemo. He doen't get sick quite as often. He sleeps about 20 hours a day. He got a great big smile on his face when Steve walked in today. He loves his Daddy sooo much.
More later,
Love,
Amber
Saturday, September 11, 1999 at 06:25 PM (CDT)
Kyle is being such a trooper. He is all through with his first chemo(Busulfan). Today he started his second phase, Cytoxin. This one goes throkugh his I.V. So much easier than the busulfan, which was oral. Nasty!! They are giving him lots of fluids, so that the cytoxin doesn't settle in his kidneys or liver. They are also giving him Mesna which helps with this too.
He isn't eating alot. He maybe eats 12-14 oz. a day. Big drop from the big boy meals he used to eat. They said that was to be expected. So once we get transplant Thursday, they will put him on TPN. TPN is supplemental proteins and all that good stuff. They said he would probably get to where he won't eat at all. So that will help.
Well that's about all for today. See ya tomorrow.
Love
Amber
Thursday, September 09, 1999 at 12:50 PM (CDT)
Hi all,
Kyle and I are doing very well. He is taking his chemo like a champ. He has gotten sick a few times, but not much. Transplant day is fast approaching. One week from today. He sleeps alot now. He loves to play peek-a-boo. I think that is his fav right now. We still watch Sesame Street and Barney. He perks up when Elmo comes on, and he just loves Barney. He laughs and tries to sing along.
No word yet about why he was having those seizures. They have done and EEG and did a MRI yesterday. They both have come back normal. They are giving him Dilanton, an anti-ceasure medicine. It seems to have helped. He hasn't had any since they started him on it. Other than that he is doing great.
Love to all,
Amber
Sunday, September 05, 1999 at 05:54 PM (CDT)
Hi all,
Kyle and I are going to check-in tomorrow. We will begin chemo on Tuesday. We will do this for 9 days and then on Thursday we will get transplant. Yeah!!!!
We will be in the same room that we were in the first time. 5209. So if you would like to reach us call (919) 681-5209.
We should be out on 4-6 weeks if everything goes well. Maybe even sooner. The record is 27 days, but we aren't pushing it.
Well, we have a new picture. Steve will post it soon. Please keep in touch and God Bless you all.
Love,
Amber
Friday, August 20, 1999 at 08:20 AM (CDT)
Hi
I know that It's been almost a month, but we've been very busy. We go every Monday for chemo, and then it's so busy the rest of the week. Kyle is almost walking. We hope that he will be pretty good at it when he goes in the hospital. We will be admitted in the next couple of weeks. It was supposed to be this coming week, but there are no beds available. We want to get in so that we can get home. We hope to be home by Christmas. Well, we appreciate all the thoughts and prayers from everyone.
Thank you and God Bless,
Steve, Amber, and Kyle
Friday, July 30, 1999 at 11:58 AM (CDT)
Hello everyone,
WE'VE FOUND A MATCH!!!! YEAH!!!!!!!
We still have a few more weeks of chemo left. We will go back in the hospital in about 3-4 weeks for preparation for transplant. We are so excited that so many of you have visited our son's page. We appreciate all the words of encourgagement, thoughts and prayers from all of you!
The nurse came out today and said that everything looks good and we will know how the blood counts look this evening. So...stay tuned!
Love ya and God Bless!
Amber, Steve and Kyle
Sunday, July 25, 1999 at 05:10 PM (CDT)
!!!!!!!!!!!!!!HOORAY!!!!!!!!!!!!!!!
Kyle has been released as an out-patient!
We are driving back to Duke every Monday for chemo, and then heading home for a few days. It's great! Our house is a home once again!
We have a few more weeks of chemo before we can go to bone marrow transplant. Now we need to find a match.
Tuesday, July 20, 1999 at 04:01 PM (CDT)
It's 5pm. Kyle had his Lombard Puncture chemo today. He is still full of energy though, wanting to get up out of bed and play. Usually he is so tired from chemo that he sleeps all day and night and is sluggish the next day.
His red blood cells, hemoglobin, and white blood cells are the highest they have been since we've been in the hospital! His platlets are still very low and he may get a transfussion tomorrow.
All in all, he is making remarkable progress and is full of energy. He is a very strong boy and a courageous fighter.
Saturday, July 17, 1999 at 07:06 PM (CDT)
Kyle had his bone marrow typed. Amber and I are not matches, so it is on to the national bone marrow database. For those of you who are interested, bone marrow is typed through a simple blood sample... quick and painless. Even if you don't match Kyle, you could save the life of another child. What price can you put on that? Contact the American Red Cross at 1-800-228-1496 for information on how to get typed.
Kyle is feeling a little sluggish today. The great news is that his hemoglobin and red blood cell counts are WAY up. His platlets and white blood cells however, are very low.
To everyone at B&N Hickory, and to our friends back home, I may be back sometime next week... if everything goes as planned.
Everyone has asked what they can do to help, so I will post some needs.
1. Prayers
2. Electronic Air Cleaner
3. Suitcase/Luggage
4. Gerber Baby Jar Foods
5. Diapers (Medium 16-28 lbs)
6. Baby Wipes
7. Canned Foods
8. Lysol Disinfectant
9. Laundry Detergent
10. Stackable Plastic Crates
11. Cottonballs
Monday, July 12, 1999 at 11:26 PM (CDT)
Well, "Bam-Bam" had his surgery today and everything went perfect. He now has a new central line... hopefully he won't pull this one out! There is still the chance that we might get to be out-patients by the end of this week!
I promise there will be pictures, we have taken quite a few. It may take a week or so for me to get them scanned in, but they will be there.
Everyone has asked what they can do to help, so I will post some needs.
1. Prayers
2. Electronic Air Cleaner
3. Suitcase/Luggage
4. Gerber Baby Jar Foods
5. Diapers (Medium 16-28 lbs)
6. Baby Wipes
7. Canned Foods
8. Lysol Disinfectant
9. Laundry Detergent
10. Stackable Plastic Crates
Sunday, July 11, 1999 at 09:34 PM (CDT)
Kyle is doing great! The chemo is not making him sick... as a matter of fact, he is behaving like his old self again!
Smiling, laughing, crawling and climbing, Bam-Bam is just full of energy. He pulled out his central line yesterday and will have to back into surgery Monday. Oh well... at least he is happy once again.
Amber, Kyle and I would like to thank everyone for their cards and letters. Most of all, we want to thank you for your prayers and support.
A very special thank you to Kevin, Donna, Tracy N., Howard & Ann, Renee, and Tracy from Durham. We love our Barnes & Noble family and deeply appreciate all you've done for us.
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