about CaringBridge  |  home page  |  view guestbook  |  view photos  |  journal history  |  make a tribute donation

Click here to go back to the main page.

Tuesday, January 6, 2009 11:42 AM CST

We had a really nice Christmas. This was the first year that Jeremy really remembered Christmas last year, so he was really excited about Santa.
Ella tested positive for strep (again) and has just finished a ten day course of antibiotics. Hopefully the omnicef knocked it out, but I am not so sure... she started again today with the cough and runny nose. Guess we'll be heading back to the doctor's office tomorrow.
Jeremy enjoyed his Christmas vacation so much that I thought we'd have a hard time when it was time to leave for school this morning. But he surprised me by just being excited to see his friends again. I was really relieved.
Here are some new pictures.
H.

Sunday, December 7, 2008 7:47 PM CST

The kids got better and then I got strep throat.
So now all four of us are on an antibiotic - we want to wipe it out at the same time and stop passing it back and forth to one another.
Jeremy got to ride on a float in the Athens parade last Thursday night which he loved. Then on Friday night we went to the Christmas festival in Winterville and rode a train, roasted marshmallows and hotdogs and saw Santa (but since the line was two hours long in 30 degree weather we opted to wait for the lap sitting). On Saturday morning we took the kids to Hoschton because Santa was at the depot. Jeremy got to sit in his lap but Ella wouldn't have anything to do with him at all. She screamed if he so much as looked at her. Then this morning we went to a birthday party at Gymboree for my cousin. It was great - I'm considering having Ella's birthday party there next year.
So we've had a busy weekend, but I wanted to take the time to check in and post a few more pictures.
Happy Holidays!
Holly

Thursday, November 20, 2008 8:21 PM CST

Jeremy and Ella both still have strep throat, even after the full course of antibiotics from before. They're both on another round of stronger antibiotics, and we are waiting on the results of the throat culture that was done on Monday to determine exactly what strain of strep we are dealing with so that we may treat it more aggressively and effectively. I plan on calling tomorrow to speed things up a bit. A tonsillectomy is not expected for either of them, though... they only perform those on kids who are five years old or older. So that's a relief.
Additionally, Jeremy has come down with chicken pox (no, I'm not kidding). Since he's had both immunizations it is a very mild case, but he still can't go back to school until the Monday after Thanksgiving. And we all know that Ella hasn't had any immunizations for chicken pox so I expect her to come down with it soon.
And let's just top all of this off with a nice little case of croup, shall we? Jem has been coughing on and off all day long, but it worsened ten-fold as soon as his head hit the pillow tonight. And the cough has that definitive 'barking seal' quality, so I'm pretty sure we're in for a long, long night. Hooray. I see a trip to WalMart for a new humidifier in the very near future.
Nonstop. Absolutely nonstop.
H.

Tuesday, November 11, 2008 12:02 AM CST

Hectic as usual.
Both of the kids had strep throat last week. This makes three times in the last two months that Ella has had it. The same thing happened to my nephew and he's having a tonsillectomy on Thursday, so keep your fingers crossed that she shakes it this time for good. I'm taking her back to the doctor on Monday and they'll do a repeat strep test before giving her her first immunization.
I really, really wanted to do only one immunization at the time but that isn't really an option with the cocktails (MMR, DTaP) unless you order them individually which you then have to pay for completely out of pocket. SO. We will start with the ones that come by themselves, like the Polio vaccine, and go from there. If she progresses well with no noticeable side-effects from the single shots we will move on to the cocktails. However, if she still has strep on Monday we won't do any immunizations at all and she will probably have to see an ENT. And really, if she still has strep throat I might start freaking out about the state of her immune system (Matthew notwithstanding) and start calling the oncologist at Egleston for his input.
At the end of the week last week my van started acting up. $700 later (of course, right at Christmas) it is now fixed, thankfully. Then on Sunday our kitty started having accidents everywhere, and one of the places was on a white towel where I noticed that there was blood in his urine. So he had to go to the vet last night, where he was diagnosed with a UTI and given a ten day course of antibiotics. Josh was sick all weekend (we're going to assume it's strep) and the doctor called in some medicine for him yesterday as well. To top it all off, we have been fighting a common school-time issue (I won't say what but it's a huge headache) for the past couple of weeks or so, and I have been busy busy busy.
How was your week?
I'll post some more pictures soon (swear) but really I barely have time to breathe these days, what with all the washing and medicine and such. At the very least I'll keep you posted regarding Ella's throat.
H.
Sorry Grandmama - I totally forgot to mention my early birthday present from my folks - they took us all to Blue Ridge, GA, on Saturday to ride the Blue Ridge Railroad. Jeremy got to ride on a train for the first time, and he really loved it. The leaves in the mountains are just beautiful, and the train was very exciting. Thank you both so much!

Friday, October 17, 2008 10:54 AM CDT

Jeremy spent the night with Nana and Grandbob this past weekend. They picked him up on Saturday morning and took him to Fernbank where he saw LOTS of dinosaur fossils and statues (right up his alley). They went and picked out a pumpkin, watched a movie and brought him home Sunday afternoon. He had such a good time!
On Monday we went to the Georgia Aquarium (early Christmas from Nana and Grandbob - Thank you so much!) and it was incredible. He is still talking about the hammerhead sharks and the whale sharks. Also the elephantnose fish (no, not kidding) made quite an impression. We got an alligator for him from the gift shop and the two have been inseparable ever since.
Then yesterday we took Josh to the airport (he's in California for work for the next week) and Jeremy got to see the planes up close. I had to keep him out of school to go, but he had a doctors appointment yesterday afternoon anyway so it was no big deal.
Jeremy has been eating all kinds of things lately that he's not supposed to eat (paper, uncooked rice, stale cheerios glued to art projects, styrofoam, etc.) and after the fourth or fifth report of this upon picking him up from school on Wednesday I called his pediatrician who wanted to test his hematocrit. Turns out he is a little anemic (who knew eating paper was a symptom of that?), so we'll be giving him an iron supplement from here on out. Lord knows he doesn't get any iron in his diet, so I guess it makes sense.
I'll post some pictures when I have the chance - Josh is gone and these kids keep me running!
H.

Saturday, October 4, 2008 9:51 PM CDT

Business as usual around here.
Well, not exactly. Josh has pretty much been at work 24 hours a day since Sunday. Their biggest event is going on now and in addition to that he's also working security to earn a little extra cash. We're all in daddy withdrawal.
The little towns around here are having their Fall Festivals, so we've been going to those. It's been a lot of fun. The one in Hoschton last weekend had a pony ride AND a petting zoo AND a little train to ride so Jem was really in his element.
Jeremy is going to Nana and Grandbob's next weekend and he is SO excited. We've talked about it at least fifteen times every day since I told him. Thank you, Nana, for having him there! He loves you guys so much.
New pictures from the petting zoo...
H.

Tuesday, September 23, 2008 7:05 PM CDT

We took Jem to see Dr. Vos last Tuesday at the liver clinic at Egleston. They plotted his height and weight on the growth chart and (drum roll, please) he is totally within normal range! We have their official permission to only do the night feeds if we feel he really needs them. Frankly, I think I need them more than he does! I am keeping track of everything he eats, and supplementing accordingly. In the past week, we have only done two night feeds of about 200 ml's.. He's really eating like a champ, and trying all sorts of new things. His current favorite food is chocolate ice cream. He gets a scoop after dinner if he at least tries everything on his plate. I figure that at least he's getting it right before bed (so it all goes to extra weight) AND it's incentive for him to try what I make for dinner, too. The nutritionist said that a scoop a day is fine with her. Also, he's drinking milk two or three times a day (only chocolate milk, of course). It suddenly occurred to me in the last day or two to make it with Carnation Instant Breakfast instead of chocolate syrup, and I'm happy to say that he likes it better that way.
They told me about a week ago that he's not really eating anything at school (no wonder he's so ravenous when he gets home!) so I've started feeding him breakfast before he leaves and packing a lunch for him from home. We were doing peanut butter and jelly sandwiches (which he loves), but I was told yesterday that a child in his class has a severe peanut allergy and no peanut products of any kind are allowed in the school. Which stinks since it's pretty much the only kind of sandwich he likes. Tomorrow he's going to have mac and cheese, a couple of turkey slices and some dried fruit - hopefully he'll like that as much as the PB&J.
I took both of the kids to the dentist this morning for a cleaning. Neither of them had any cavities (hooray!), but we did learn that none of Jem's baby molars ever grew any roots. That's right: there's nothing at all holding his teeth in his head (Thank You, Chemotherapy). The dentist said that they still seem pretty firmly embedded in his gums for now, but we'll have to see what happens as he grows. This probably explains why that front tooth became loose so prematurely. Hopefully he'll be able to hold onto them for at least a few more years, though.
Josh and I have an anniversary coming up this weekend (#6!) so Grandmama and Pawpaw are going to keep the kiddos on Saturday night. Lucky for them - no boluses or night feeds to worry about this time! I know the kids will love it; they're just crazy about my folks. Ella even calls my mom 'Mama' and you know what? It's okay with me if she always does. :)
We got Jem's school pictures back. Well, the proofs, anyway. I'll try to post those if I can.

Sunday, September 14, 2008 9:28 PM CDT

We all went on a trip with Grandmama and Pawpaw yesterday.
My parents took all the kids and grandkids to Yellow River Ranch and Stone Mountain this weekend.
Yellow River Ranch was a lot of fun. Jeremy and Ella saw all sorts of animals. They even got to feed squirrels and pet fawns! Pawpaw brought a big bag of pears and handed them out to the kids for feeding the animals. We had such a good time.
After the ranch, we went to Stone Mountain and had a picnic. Then we all saw the laser show and headed home. It was a really, really good day.
Here are some new pictures!
H.

Friday, September 5, 2008 6:46 AM CDT

I've kept you updated about what the kids and Josh have been doing, but I thought I'd let you know that I've been busy as well.
Last month, I put up 18 pints of pear preserves. With the help of my mother and my brother, I put up 24 pints of apple butter. I've shelled two five-gallon buckets of purple hull peas and put them in the freezer. I've picked apples, scuppernongs, and muscadines. The scuppernong and muscadines are juiced, and the juice is waiting in my fridge for jelly making today. As I type this, there are three five-gallon buckets full of Stayman-Winesap apples we picked from my mother's tree on my front porch (pictures of which are attached), and besides apple jelly I'm not sure what to do with them yet. Oh, and I have another bag of pears that I think I'm going to make pear honey with. Did I mention the fig preserves? Oh, and there are 30 pints of blueberries hand-picked by me in the freezer for jam later.
I'm exhausted, but happy. It's so nice to look in the pantry and see all of those jars, filled with good things for my family that I've made. And I think that those things will be nice for Christmas presents this year, which will save us a bundle!

Saturday, August 30, 2008 6:15 AM CDT

Jeremy started school two weeks ago.
For the first week and a half, he HATED it. He cried from the moment I got him up in the morning until they pried him from his car seat at school when Josh dropped him off. However, he was always happy and smiling when I picked him up in the afternoons, so I knew he was enjoying it once he got there. We even had a lot of potty accidents those first two weeks (in fact, he wet his pants four days in a row the first week, which he hasn't done since he was potty-trained). So he regressed a little, but now seems to be doing fine. He didn't cry at all this past week, and bounces right out the door with Josh when it's time to go. And no accidents this week, either (although that might be because I promised him a trip to Chik-fil-A on Saturday if he didn't wet his pants this week at school - I am not above bribery).
Ella has had a runny nose for about two weeks now, then she started coughing on Thursday. I hadn't taken her to the doctor before because it was just a runny nose. But on Thursday, she coughed for an hour straight and I decided that even though there were really no other symptoms that she should probably be seen. The pediatrician looked in her ears and throat and said they looked great, but that's when I thought to tell her that my nephew had had strep throat last week. Even though she was asymptomatic, the dr. decided to do a strep test and it was positive for strep. Strep throat? With no fever? And her throat looked fine?! I thought that was a little strange, but the doctor said that strep is going around and has symptoms you'd never expect. Which I know is true, because Matthew had been feeling bad for a week with stomach issues but had not run a fever or complained with a sore throat when he had it last week. So FYI: strep throat does not always cause a sore throat. Who knew?
Here are some new pics!
H.

A little update:
In addition to Ella having strep throat, Josh and Jeremy were up all night with some sort of stomach bug (I'll spare you the gross details, but know that it was messy and they both ended up sleeping on the air mattress covered with plastic in the living room with garbage cans on both sides). Add that mess to the fact that Ella's antibiotics have had the unfortunate side effect of giving her some major intestinal issues, and the results are:
a) 14,000 loads of laundry,
b) two trips to the pharmacy for nausea medication,
c) one trip to the grocery store for laundry detergent, paper towels, ginger ale, Pedialyte, and Gatorade, and
d) one tired mama.
Fortunately for me (as well as for them), they are all sleeping now and I am finally caught up. But I thought I'd share some tips I learned the past three or four days, courtesy of the internet:
1. If your child throws up on his BRAND NEW SCHOOL SHOES, stuff them with newspaper or plastic bags after you wash them so they'll retain their shape as they dry.
2. If your toddler, in a flurry of artistic expression, scribbles all over your LCD computer monitor with, oh, a black Sharpie marker, white toothpaste on a damp sponge removes it in about fifteen seconds.

Monday, August 11, 2008 6:07 AM CDT

My parents, at the beginning of the summer, wanted to arrange a special day out for all of their grandchildren before school started. They took my sister and her kids to Six Flags last weekend, but I opted not to go to that one because I didn't think Ella would really enjoy it. So instead they took the four of us to Pine Mountain for the day.
We had such a great time! We started the day off at the Pine Mountain Animal Safari. This is a huge 500-acre park with more animals than Zoo Atlanta. We rented one of their black and white, zebra striped vans for the drive through section of the park. The animals would literally stick their heads through the open windows of the van for food. We fed deer, reindeer, antelopes, zebras, bison, and water buffalo. There were emus, ostriches, giraffes, pot-bellied pigs, camels and I don't even know what else. Jeremy had a blast.
Then they also had a walk through section that was more like a traditional zoo. There were snakes (BIG SNAKES), bears, tigers, lions, ligers (which are lion/tiger mixes), lemurs, monkeys, baboons and wallabies, to name a few. Jeremy was really in his element, and Ella enjoyed it as well.
After we left the Safari, we went to the warm springs and visited some historic sites such as FDR's Little White House. Then we went to FDR State Park which has one of the biggest, spring-fed, rock-bottom pools in the world and went swimming for the rest of the afternoon. We cooked hot dogs on the grill and played on the playground and then headed home around 7:30 or so. We were planning to stop by and see the Laser Show at Stone Mountain on the way back, but we were all just too tired at that point to do anything but sit in the car. :)
My mom taught Jeremy how to stick his thumbs out and say, "Thumbs up for my special day!" It was so cute.
I'm putting up a few pictures today, and will change them out for a few more in a day or two.
Thanks, Grandmama and Pawpaw for arranging all of this for us! We had such a good time, and Jem will be talking about it for months! We can't wait to go back.
H.

Tuesday, July 29, 2008 8:39 PM CDT

We had a scare with Jem this past weekend.
As most of you know, we are quite certain that it was Jeremy's first round of immunizations at eight weeks of age that triggered his HLH. So even though he is way out of transplant and is considered cured, it still terrifies me when he has to have any shots. Jeremy received four immunizations last Thursday. Normally I don't let them do that many at once on him, but he needed them so that he'd be up to date for starting Pre-K next month.
Then this past Thursday night, he started running a fever, which hovered somewhere around 102 all night. I took him to the pediatrician on Friday since I didn't want to have to go through the weekend without being seen. She didn't really see any problems with the exception of some clear fluid behind his left eardrum, so she didn't prescribe any medication and told us to come back in if the fever persisted over the weekend. Well, Friday night the fever kept climbing higher and higher and hit almost 104 several times during the night. By Saturday morning I was starting to panic and decided that at the very least he needed some blood work done and maybe a urinalysis just to be on the safe side. I called his pediatrician who agreed that even a child with no history of BMT would require further evaluation after running a fever that high for that long. So we spent four hours on Saturday in the emergency room, but in the end it was discovered that he had an ear infection in both ears and an upper respiratory infection.
Whew.
I LOVE run of the mill diagnoses... I really, really do.
He got his first dose of antibiotics in the ER on Saturday, and his fever finally broke Saturday night and he hasn't run one since. Thank goodness.
In other news, I fractured my ankle on Monday morning.
Again.
Actually, I have two hairline fractures and several bone chips. The bone chips were caused from my ligaments actually tearing away from the bone and taking little bits of bone with them when they went. I went to the orthopedist Monday afternoon, and after looking at my x-ray he told me that I have done this so much now that it looks like the bones in my ankle have been beaten repeatedly with a hammer. He wants me to consider having reconstructive surgery to strengthen and stabilize the joint, but I don't know that it's possible for me to commit to anything like that right now. Especially since it means that I will basically be in a cast and unable to walk without assistance for over two months following the surgery... maybe I'll do it this winter when Jeremy's in school and my Mom can help me with Ella during the day. Basically, if I don't have the surgery, I can look forward to a lifetime of fractures and sprains of my right ankle. If I have the surgery, I'll be out of commission for a little while but will have a lot more stability in my ankle and hopefully won't injure it like this three to five times a year.
Tough call, right?
Right now, I am just having a really hard time chasing the kids and trying to keep their lives as normal as possible even though I'm on crutches. Every household task seems insurmountable when you can't stand upright without wincing and your armpits hurt from crutching around. I'm terrified of taking them outside because, well, I might not be able to get them to come back in or I might fall again, God forbid. Or THEY might fall and I won't be able to help them. But since there's nobody to take the kids off my hands for a few days so that I can somewhat recover, I just manage as best I can until Josh finally gets home in the evenings to help me.

It stinks.

I'll post new pictures soon.
H.

Saturday, June 14, 2008 7:54 AM CDT

Everything is about the same - we are having lots of fun and swimming, swimming, swimming. We went in halves with one of our neighbors and got an above-ground pool (no, not a REAL pool, just one of the cheapy ones). It's about 16 feet wide by four feet deep, so it's plenty big enough for the kids to swim in. And Jeremy LOVES it - it's almost impossible to get him out of it. Which is okay with me, as long as we keep the sunblock on him. After swimming yesterday for about FIVE hours, he came in and ate a whole six piece chicken nugget meal with the fries from Chik-fil-a. I'll keep him in there all summer if it means he eats like THAT when he gets out! And I guess it makes sense - what makes you hungrier than swimming all day? I can't think of anything off the top of my head. Ella, on the other hand, is not really sure what she thinks of it yet.
Josh has his vacation this week, but we're not really doing anything. We were thinking about going to Charleston for a few days, but gas is just so expensive we'll probably just stick around here and get some things accomplished.
New pictures!
H.

Sunday, June 1, 2008 5:45 AM CDT

Everything is going well here.
Jeremy had another round of immunizations, and didn't seem to have a problem with them. Only one more set and he'll be ready for school. It takes us a little longer, because I don't want him to have four shots at the same time. Not only because of the HLH/immunity thing, but also because, well, I know how my big arm feels after getting one flu shot in it, and I don't want his little arm to have four needles in it at once. Ouch!
Ella still hasn't had any immunizations, so we are still nursing. I'm still too paranoid to start hers. I keep making the appointments to start them, and then rescheduling them for the next month. When I finally do get up the nerve to take her in, she will only get one at the time. I am really not in a big hurry to start them because she's going to be at home with me for another year, anyway. I was going to put her in Early Head Start next year so that I could go back to school full time. But since I stayed at home with Jeremy for almost three years before she was born, I feel like I owe it to her to give her just one year of staying with me by herself. I am really looking forward to it, actually! And I'll just take two classes like I've been doing.
I don't really talk about my own health issues very much (neither on this blog nor in real life), but I have had neck pain for about six years now. I've asked the doctor about it before every now and then, but the usual treatment has been prescribing pain pills and sending my on my way. After taking my anatomy class this past quarter, I finally decided that there had to be a physiological reason and demanded a referral to see an orthopedist. He did an MRI, and I now know that I have a bulging disc (which is pressing on a nerve and causing numbness in my left arm and hand), bone spurs and degenerative arthritis in my neck. Really, I'm kind of sad to have all of these things at my age, but I am so relieved to finally have a concrete diagnosis and treatment plan. He put me on muscle relaxers that are compatible with breastfeeding, and I start physical therapy next week. After three months of physical therapy, we'll do another MRI. Hopefully, most of the problems will be resolved, but if they aren't then we'll talk about surgery. So here's hoping that the physical therapy will be enough - there's no way I can be on my back long enough to have neck surgery.
There was a problem the last time I tried to put pictures up on the website, but I'll try again.
H.

Wednesday, May 7, 2008 1:30 PM CDT

Ella is finally starting to talk! She can say several words now, like "Mama, Dada, Bubba (short for brother), Grandmama, and Pawpaw." She also recently came out with her first two word phrase, "Go Bye-Bye," and calls the cat "Kitty-cat."
Josh and I have a big date night scheduled for tomorrow night - the Radiohead concert! I'm so excited. Because of this, Ella will be spending the night with my parents tomorrow night for the first time. I would be worried about it, but she absolutely LOVES her Grandmama and Pawpaw. They came over last night to have some cake for their anniversary (Congratulations, you guys!), and she cried for about thirty minutes after they left. When we're at their house, she won't even let me put her in the car seat without a huge struggle when it's time to go. So I don't think spending the night with them will be an issue for her.
In fact, to make things easier on my parents, I arranged for Jeremy to spend the night with my sister since she knows how to do the night feed, and Jeremy is pitching a fit to spend the night with Grandmama, too. But since he did a couple of weeks ago, I just tell him that it's Ella's turn this time.
Really, though, Jeremy needn't fret... starting next week, Ella and Jem will both be spending every Tuesday night with Grandmama so that Josh can get to work on time on Wednesday mornings instead of waiting for me to get home from school. His department started having meetings every Wednesday morning at work, and because of my school schedule Josh has missed every one. So my mother (who is retired as of today!) has been kind enough to agree to letting them stay with her on Tuesday nights and keeping them until I get done with class on Wednesday mornings. Dinner with my parents followed by a whole night with them and Matthew will just tickle my kids pink. Not to mention how it makes ME feel! Ha!

Sunday, May 4, 2008 8:22 PM CDT

Jeremy's appointment on Thursday with the Marcus Institute went well. Actually, they were impressed with how much they saw him eat. They believe that his problem is totally behavioral (which we thought already) and that we should be able to resolve it with some outpatient therapy.
Oh, and the car/school situation worked out, as well... my brother let me use his truck that morning to go to school (Thank you, Uncle Jason!) and Josh took Jeremy to his appointment. After the appointment, they were able to go and visit Nana, Grandbob and Uncle David for awhile, and Jem has been talking about it nonstop ever since. Apparently, the best part of his whole day was seeing Nana and getting a Yogos dispenser from her, which he's carried everywhere and shown to EVERYONE: "Look at what my Nana gave me! Isn't it cool? It is SO cool."
My parents are planning to take all the kids and grandkids to Six Flags in a couple of weeks (and considering that there are 17 of us, this is no small feat). Although I really want Jeremy to go (they have a Thomas the Tank Engine exhibit there now), I kind of dread taking Ella. How much fun will she have riding around in a stroller all day in the heat? I'm hoping I can find someone to keep her that day but since all of my family will be at Six Flags, I may be out of luck.
The other day, Jeremy told me, "I cannot wait to go to the beach this summer, Mama, where I will see my very first iceberg and I will look inside and see big brown eyes and long white tusks and it will be my very own Woolly Mammoth." Boy, is he going to be disappointed. :)
Another thing that I'd really like to do this summer with Jeremy is take him to the Georgia Aquarium. He would totally love it, but the tickets are just so darn expensive ($30 a person? Really?). Maybe we can take him with this generous “tax relief” check we're supposed to be getting from Mr. Bush.
I'll put new pictures up soon.
H.

Wednesday, April 30, 2008 3:53 PM CDT

Jeremy has his first appointment at the Marcus Institute tomorrow for a feeding evaluation so wish us luck!
Because of our current one car situation, when we go someplace it is such a big hassle. Tomorrow, for example: I have to leave the house with Ella at a little before 6 a.m. to take her to my sister's (no, I cannot take her with me). Then I have to be back at my house by seven to pick Josh and Jeremy up. I'll take Josh to work and be in Atlanta by nine. Josh was supposed to take Jem to this appointment, because I was supposed to have class. But I will miss class and my chapter test (which I cannot make up) because of this appointment and no car. :( Hopefully I'll get back to Wendy's to pick Ella up by two or three, and then hit the road to drive all the way from Athens back up to Hoschton to pick Josh up from work and we should all be home by 4:30 or 5:00. Tomorrow alone, I'll be putting about 250 miles on the van. Good thing we just got new tires.
It should be a really long, awful day. It hasn't even started yet and I'm already tired. But it will be worth it if we can get some answers, I suppose.
H.

Tuesday, April 22, 2008 1:49 PM CDT

New Pictures!

Tuesday, April 15, 2008 1:50 PM CDT

Let's see... what have we been up to?
Since I last journaled:
I came down with a vicious upper respiratory infection AND sprained my ankle on the same day.
The kids have both been under the weather with runny noses and allergies (at least, I guess that's what it is).
Ella cut four teeth in one week.
And then this past weekend, I was violently ill with a stomach bug.
The fun never ends. Never.

Just a little side note:
Being sick really stinks, and so does spraining an ankle. But spraining your ankle while you're sick when you're outside alone with your children really, really stinks. Especially when you are in the back yard and the back door is locked, so you then have to crawl on your knees around the house, over the cement driveway while desperately holding onto a 30 pound toddler and begging your four year old to just please, this once, do exactly what he's told. Which thankfully, he did. I think seeing me lying prone on the ground and crying really scared Jeremy, because he ran up to me shouting "What bit you, Mama? What bit you?" and didn't leave my side for an instant.
See? He really CAN listen! This gives me great hope for the future.

On a more positive note, Jeremy got into Pre-K and will be starting school in the fall. Hooray! I'm assuming at this point that it won't be much different than having him here, as I'm sure I'll be called to the school at least every other day for some reason or another. :)

I will post new pictures as soon as we are all well enough to take some.

Holly

Monday, March 24, 2008 9:11 PM CDT

Jeremy was supposed to have his first tee ball practice on the Saturday before last (3/15), so the Friday before I started talking about how much fun it was going to be and so on. Jeremy told me, "Mama, I don't want to go. Those boys will HIT me on the head!" And naturally, I reassured him that he didn't need to be afraid - that nobody was going to hit him in the head.
Well, practice was canceled because of all the bad weather and rescheduled for this past Saturday. So last Friday, I started building it up again: how much fun he was going to have, how many other little boys were going to be there to play with, etc.. And again, he told me that the boys would hit him in the head and he didn't want to go. "Oh, Jeremy," I replied, "that's just silly; I promise that NOBODY will hit you in the head."
We were not there for ten minutes before Jeremy managed to get hit.
With an aluminum baseball bat.
RIGHT in the face.
I mean, practice hadn't even started yet. All of the parents were gathered around the dugout, meeting the coaches, and all of the kids were running around in the infield. I looked up because I heard him crying, and he was standing next to some kid with a bat holding his hand over his face. By the time I got to him, he already had a huge knot on his cheekbone that was starting to turn blue.
He certainly knows how to make a liar out of me, and always has. But isn't this a little extreme? :)
So he has a nice little shiner underneath his left eye.
And then yesterday, his upper lid on the same eye started to swell and turn red, and fearing that he might have conjunctivitis, I took him to the pediatrician.
Don't worry; it's only a stye. But you know, those things can really hurt. And putting the prescription eyedrops in his eye is no fun at all. You can't force it open for fear of hurting either the stye or the knot on his cheekbone. Plus he screams and squeezes his eyes closed if you even TRY to put it in. I guess I'll have to put them in there while he's sleeping, unless anyone out there has some advice.
That poor kid has the worst luck.
After it was over, the little boy who hit him (accidentally, no doubt) came over with his mother and started crying and telling Jeremy that he was sorry. Jeremy just looked down, patted him on the shoulder and said, "It's okay. Accidents happen all the time."
Then I asked him if he wanted to stay and play, or if he wanted to go home and wait until next time. "No," he said, "I want to PLAY!" and he got up and ran out onto the field and finished practice. I was so proud of him for being such a big boy! :)
Here are some pictures.
H

Sunday, March 16, 2008 10:26 PM CDT

Not much new, here.
Josh has been out of town for about a little over a week, and just got home today. He wasn't scheduled to be back in town until Thursday, but he's been sick since Monday and was finally sent home. Needless to say, I am very, VERY glad he's back. Every time he goes out of town, I chant quietly, "I never want to be a single parent. I never want to be a single parent...". You never realize how much someone helps you, and how much you NEED the help they give until you go without it for awhile.
Jeremy had his first tick on Thursday. I'll spare you the gross details, but it was in, shall we say, an uncomfortable place and was difficult to remove. And trying to explain exactly what a parasite is to a four-year-old is challenging, to say the least.
Classes are finished for the quarter and I got an A in both of them! Yippee! I'll be starting at Athens Tech next quarter (as it is the only school in this area that offers the Associate Degree of Nursing), and will take Medical Microbiology and Spanish (as an elective). Wish me luck!
Holly

Sunday, March 9, 2008 10:16 PM CDT

Oh, Jeremy. How the time has flown.
You are everything that a mother could want in a little boy: inquisitive to a fault, totally headstrong, and wise beyond your years. There has never been a boy child who was any sweeter than you are, my love.
It is so strange to me that there was a time when I wasn't sure that we'd experience your first birthday together, and today we celebrated your fourth! The miracles we have witnessed together are astounding.
As I watched you fall asleep tonight, all of the moments of these past four years came rushing back and hit home. How sick you have been, and how much you've had to overcome at such a young and tender age. How scared I have been for you, for your health, for your future and your life. How many times I have stood beside a hospital crib, watching you struggle for every breath and just praying for everything to be as okay as it can be. How we can finally, finally catch our collective breaths and give a sigh of relief and know that you are, without question, out of the woods.
For the most part, it feels as though those hard times happened a lifetime ago. Tonight, though, they're knocking on my door, begging to be remembered. And I embrace it, because it makes me all the more appreciative of what we have now.
I love the way you wake up in the morning and go to sleep at night. I love your constant stream of chatter throughout the day, and your absolute refusal to nap and give me a break from it. I love your blossoming wit, and the way you're quick on the uptake. I love the way you smell. I love the way you can be selfish and selfless within a time span of ten minutes. You are everything that I have always wanted you to be - I have loved you since before you were born, and I will love you forever.
Mommy

Friday, February 29, 2008 1:38 PM CST

Jeremy had an upper GI with small bowel follow-through about two weeks ago.
We were looking for any kind of loops or obstructions through his small bowel - an explanation for his erratic bowel patterns and his tendency to retain food in his stomach for longer than normal (like, days). What we learned instead is that Jeremy has abnormally fast motility through his small bowel. Usually it takes between two to six hours for the barium to make its way through that part of the GI tract; it took about 45 minutes to go through Jeremy.
As usual, our boy is a medical mystery.
Then, this past Tuesday, he had his first appointment with a hepatologist (or liver specialist, for those of you who aren't currently taking medical terminology.. haha). Jeremy has had elevated liver enzymes ever since transplant, and we are finally looking into it. Hooray! The only thing she specifically mentioned looking into is autoimmune hepatitis (*WARNING* Do NOT Google this - I did, because I'm a glutton for punishment like that, and I'm freaked out about it enough for all of us, I promise). She drew about a quart of blood from him to be sent off for various tests and panels and such. We go back in three weeks for a liver ultrasound and a follow up appointment with her.
The best thing about that appointment was that she plotted his height and weight and calculated his BMI and came to the conclusion that he's - get this - CHUBBY. Yes, Jeremy is a little on the heavy side, and because of this we are off of the daytime feeds. No more boluses! He only receives the night feeds now, and will be forced to fend for himself as far as satisfying his hunger is concerned during the day. This is all fine with his GI doctor, as long as we carefully monitor his weight to make sure it stays relatively stable. So maybe between the periactin (hunger stimulant) and the daytime starvation, we can finally get this kid to eat. I hope so, anyway.
Really, I have noticed a marginal amount of improvement in his eating over the past three or four days, but I am not getting excited about it, yet. In the past, it has only taken a few bites of the occasional sandwich to convince me that the removal of the gtube is imminent, and I am always sorely disappointed when he regresses. So this time I am determined to take it as it comes. I will cherish and celebrate every bite he takes. But as for the rest, they will be thrown into the garbage without one single wish for normalcy.
Okay, I'll try to do that, anyway.
On a happier note, Jeremy got a haircut yesterday, and nobody had to hold him down for it, either. This may not seem exciting to you, but considering that it took three grown people to hold him down for the last one he got, I thought it was a real accomplishment. All I had to do was bribe him with his favorite candy - M&M's and mini chocolate chips. In fact, we walked in to the salon and the first thing he said was, "I will be very still so I can eat all the M&M's I want."
We are having his fourth birthday party tomorrow at Chuck E. Cheese's (is that how you spell that?), and he is very excited. I, on the other hand, just cannot get used to the fact that he is FOUR YEARS OLD. I went to pick out his card, and I picked up several cards for a four-year-old and put them back, because, geez, those cards were for someone who is turning four. Then I remembered that HE is turning four, and got really depressed. I want to buy three-year-old cards again, darn it! Just for one more year! :)
I will update with photos sometime next week, after his party.
Until then,
H.

Thursday, January 31, 2008 2:42 PM CST

This is just a "WHAT MY ENTERTAINING CHILDREN ARE DOING RIGHT NOW" entry.

I'll start with Jeremy, of course, because he's the oldest, and therefore the funniest.

Jeremy has created this phrase for himself. He uses it in all kinds of ways - an exclamation (Oh, sobby-sobby-sots!), a way of expressing frustration (Oh, sobby-sobby-sots.), a way of calling someone a name (You're a sobby-sobby-sots!), or for no reason at all (running around the house, using a sing-song voice). The other night, we were sitting at the table, quizzing him about where this phrase came from:

Daddy: Did it come from a movie you saw?
Jem: No.
Daddy: Did you hear the twins say it?
Jem: Nope.
Daddy: Well, where did it come from?
Jem: From me.
Daddy: I like it. I think I'll start saying it.
Jem:
Daddy: Sobby-sobby-sots! Sobby-sobby-sots!
Jem: (very upset) No, Daddy! That's MY groove!
Daddy: (laughing) Oh, sorry dude. Didn't mean to step on your groove.

How does he even know what that means?!
----------------------------------------------------------
I'm in the kitchen washing dishes. I turn around and see Jeremy standing there, completely in the buff. He has taken all of his clothes off and is running around the house in his birthday suit.

Me: Jeremy, where are your clothes?
Jem: On the floor! In my big boy room!
Me: Why did you take your clothes off?
Jem: Becaurse. (not a typo - he just says it that way)
Me: Well, you need to put your clothes back on. It isn't nice to be naked in front of people.
Jem: But Mama, I don't WANT to put my clothes on.
Me: Why not?
Jem: Becaurse, Mama. Raccoons don't NEED clothes.

How do you argue with that?
-----------------------------------------------------------
I took Jeremy to my sister's house on Sunday so that he could spend the night with her. I was also picking my nephew up to take him back to his dad's house. On the way there, we had this conversation:

Jem: I'm going to spend the night with Aunt Wendy.
Me: You sure are. I'm going to drop you off at Aunt Wendy's and pick Jacob up and take him home.
Jem: (upset) No, Mama! You will NOT drop me off! You will take me INTO the house!

Like I was going to pull up to the curb and kick him out of the van or something.
___________________________________________________________

Now for Miss Ella.
She's running everywhere now. And I do mean running. And climbing. And falling - LOTS.
She is quite chubby - 27.5 pounds at fifteen months of age! You should SEE the hams on that baby. :)
She favors me a good bit, but I can see a lot of Josh in her, too. Especially around the eyes and the nose. My dad calls her 'Little Holly' and my grandmother told me that "her legs are built up" just like mine were when I was a baby.
Poor thing. I REALLY hope that THAT changes.
She's really just doing the regular baby things.... playing peek-a-boo, dancing (which mainly consists of spinning around in circles and then falling). She has also entered the 'Does my butt fit here?' stage of development... she walks up to you, gets within about a foot of you, then turns around and backs up towards you (or the cabinet, or the stool, or the dutch oven she's pulled out of the cabinet) and sits down - looking over her shoulder the entire time to make sure that her backside does indeed fit wherever she's trying to put it at the time.
One thing she does that's really funny: Whenever she picks up a doll - any doll - she grunts. She bends over, grabs the doll, and as she's standing back up, she goes, "UUNNHHH!" Of course, this makes me feel bad. Because that's the noise that I make whenever I pick her up, and now she thinks that you're just supposed to make that noise when you pick up a baby. Isn't that pitiful?!

___________________________________________________________

My parents got some really good pictures of Jeremy in the snow. We didn't get that much at our house, but my parents picked Jeremy up on their way farther north to see more snow. I will put them up as soon as I can figure out how to resize them.

Holly

Wednesday, January 9, 2008 5:59 AM CST

All is well here. The kids are relatively healthy, except for the standard winter time runny noses.
No real change in Jeremy's appetite, although we recently have increased the amount of periactin that he's getting. We have another appointment with Dr. Saripkin in February, so I'll let you know how that goes.
Meanwhile, I've put up some new pictures.
Enjoy!
H.

One exciting thing has happened: I enrolled in school and started classes last week! Right now, I'm just going for my phlebotomy certification, which only takes four classes to complete. I'm currently taking Human Anatomy and Physiology and Medical Terminology. The only thing that is clear to me at this point is that nothing is clear enough, and I am going to have to get some glasses ASAP! The power point presentations that my instructor is so fond of using looks like nothing more to me than smudges and squiggles. Which means my eyesight has really deteriorated since the last time I had my vision checked. What's scarier is that I've been driving my kids around while practically blind as a bat! Hopefully spectacles are in my near future.

Thursday, December 20, 2007 7:12 AM CST

Things have finally started to normalize around here again.
We had a bit of a scare with Ella at the beginning of the week - she was still spiking 104 degree temps all through the weekend, then Sunday night she developed a rash in her hairline. By mid-morning on Monday, it had spread and covered her whole torso, and by the time we got to the doctor's office that afternoon, was also on her arms and legs.
We all know that three of the major signs for activated HLH are fever, diarrhea, and rash. Although her flu test had come back as positive, it was only BARELY positive, so when she started with the rash, I started freaking out (since she'd had a fever and diarrhea for almost a week). Also, infection and illness (such as, oh, I don't know, THE FLU) can trigger the HLH process. By the time we got to the pediatrician's office at four p.m., I was in full "OH MY GOD SHE'S GOT IT AND WE HAVE TO GO TO EGLESTON AND START CHEMO RIGHT NOW" mode.
I am unpleasant to be around when this starts, as it mainly involves lots of high-pitched wailing and gnashing of teeth.
Luckily, her pediatrician was as concerned as I was. Or at least, she pretended to be concerned, which is all that I really care about, anyway. She came in, calling for Ferritin levels, a CBC, PT & PTT (coagulation tests) and triglyceride levels (She did her homework! Yay!), before she even took one look at Ella. This made me happy. Well, as happy as I could be given the circumstances. So she sent us to the local hospital for the HLH workup, and everything came back totally fine! Some numbers for you: 11.4 hemoglobin, 291,000 platelet count, mid-range ferritin, and slightly elevated liver enzymes (which do not concern us at this time). Dr. Blum consulted with Jem's hematologist anyway, who only wants to monitor her CBC from here on out.
Her rash was gone by Tuesday morning.
Whew.
In other news, Jeremy's stitches were removed yesterday. He was very good and still, and his only request was that he be given a lollipop when it was all over. He was justly rewarded for his model behavior. :)
Since he no longer has sutures in his face, we are going to have pictures made with Santa today. We did this a couple of weeks ago at our local grocery store, but it did not go as planned. Apparently, he only wants "cars & Diego" from Santa this year. We really don't watch THAT much television. But since it's so close to Christmas, and we are inundated with toy commercials during each viewing session, I am quite sure that he wants more than that (READ: EVERYTHING HE SEES). So we are going to rehearse his list this morning, and all the way to the mall, so that I can get the most for my Santa dollar. He WILL sit in his lap for more than thirty seconds this time, and I mean it!
I'll post those pictures as soon as we get home.
H.

P.S. I have received several comments about Jem's picture. That is NOT blood on his shirt! It is a tie-dyed t-shirt! Oh, and as you can see from the picture, neither of my kids were too thrilled about sitting in Santa's lap, although Jeremy did manage to stay in his lap for a couple of minutes. But he still only wants "two cars and one Diego."

Tuesday, December 11, 2007 9:17 PM CST

Ella is finally walking!
She's been building up to it for quite a while now, but in the last week or so has become a real pro. My back feels tons better, but now my legs hurt from chasing her all day. :)
Jeremy is doing well and tolerating his new formula. I think he's actually putting on a little weight, and I'm sure he's gotten taller. No actual measurements yet, but I'll take some soon.
Jeremy has started showing interest in games like Hide & Seek and Tag, although he has yet to figure out the actual mechanics of playing. The other day, I was sitting in the hallway. Jeremy ran up to me, poked me, and said "Tag! I'm it!", then ran away shouting, "Chase me, Mama! Chase me!"
We're working on that.

Holly


Ella woke up around 5 a.m. with a temperature of 105.4 - no, I didn't rush to the emergency room. :) I took her to the doctor this morning, where her flu test came back as positive for influenza.
Hooray.
Anyway, her respirations were too high and her pulse ox was too low, so we had to go for chest x-rays as well. There were some spots on those that didn't look great, but mainly just some mucus secretions in the upper chest - nothing showed up on the lower lobes as any kind of pneumonia or anything.
So, Jeremy is staying with my sister for the next few days (he had his flu shot, thank goodness), just because Ella will, I'm sure, demand all of my attention for the next few days or so. Her temperature is still spiking between 105 and 106, but seems to be coming down with Tylenol and Motrin, and the occasional lukewarm bath.
We did catch it early, so the doctor told me she'll probably feel worse before she starts feeling better.
Keeping my fingers crossed that Josh and I stay healthy enough to take care of the baby... few things are worse than taking care of someone who is sick when you can hardly get out of bed yourself.

One more thing:
Jeremy is at the hospital as I type this getting stitches in his face. Apparently, he fell onto a train when he was at my sister's house. She took him to the hospital and Josh and my dad met them there, since I had to be here with Ella. They just got finished with the stitches, and everything went fine. I was certain they'd have to sedate him, but my dad said that Jeremy remained pretty calm until they put the last stitch in, at which point he started complaining that it burned. This surprised me, because usually it takes about seven grown people to hold him down for even an IV. When I took him to the dentist for his first cleaning, three people (including myself) had to hold him down, and he STILL managed to kick the dental hygienist (who was sitting above his head) in the FACE. But he's still for stitches? Go figure.

Wednesday, December 5, 2007 6:00 AM CST

We had an exciting day at the dentist's office yesterday.
We noticed recently that Jem's front top teeth were not straight anymore, and that the one on the left was a little loose. We were worried that he had hit them on something and knocked one loose, so I took him to the dentist's office to see if everything was okay and if there was anything that could be done.
They did x-rays of his top and bottom front teeth, and we were surprised to find that not only did it appear that he had hit them once, but it looked as if he had repeatedly hit them on something. The dentist said that the roots of his top teeth were very deteriorated, which usually indicates multiple injuries. I told her that he never mentioned hitting them, and had not complained about any pain whatsoever. She said that since the roots were in such bad shape, that it probably didn't even hurt. So he may lose his front teeth really early. For now, he is not allowed to eat anything that he needs to actually bite into, and all of his food has to be cut up in really small pieces, which, of course, is not much of a problem with him. Keeping him from hitting them again is a different story, though.
Additionally, he is missing one of his permanent teeth altogether. The one to the left of his very front two teeth just never developed. There are things that can be done about this when it matters (cosmetic dentistry, tooth implants, etc.) so I am trying not to worry about it for now. We knew that some of the meds he's had to be on could affect that, and I've even heard of some kids who are missing several permanent teeth because of chemo. I'm anxious at this point about his back teeth, but they didn't do any x-rays of the back. Hopefully all of the permanent teeth will be there.
His bottom teeth look fine, though, and no missing teeth on the x-ray. Thank goodness.
Other than that, we are all doing well. Jeremy got to go to his first Christmas parade AND he saw Santa this weekend. I took him for pictures, and of course so he could tell Santa what he'd like to get for Christmas. And for the first time since he learned to speak, he had absolutely nothing to say. He sat in Santa's lap, and looked up affectionately at him, but apparently does not want one single thing for Christmas. Josh and I are going to take him to Mall of Georgia sometime next week. Maybe he'll think of something by then.
H.

Tuesday, November 27, 2007 7:18 AM CST

I hope everyone had a nice Thanksgiving.
We spent Thursday afternoon with Nana, Grandbob, Uncle David, Aunt Mary and Aunt Maggie. Nana made the most delicious Thanksgiving dinner! Even Jeremy ate some of it, so that's how good it was. :) I forgot my camera, so I don't have any pictures from Thanksgiving yet, but as soon as I get some I'll put them up!
It was wonderful for Jeremy and Ella to get to meet Aunt Mary and Aunt Maggie, although Jeremy had met both of them before - just a long time ago. Aunt Mary was a lifesaver during Jeremy's illness. Shortly after our release from Egleston following his transplant, I had an accident on the stairs and hurt my ankle pretty badly. Jeremy required A LOT of care, with IV fluids running at night, as well as a night feed, day feeds, and tons of meds. When I hurt myself, and wasn't able to do it anymore, Aunt Mary came all the way from Florida and stayed for two weeks to help Nana and Grandbob learn how to take care of him. When I got back to help, they were able to show me how to do things that I didn't even know how to do, thanks to her. I know I've told her before, but I'll never be able to tell her enough: Thank you so, so much for coming to help, for teaching us how to take care of our very sick baby. I don't know what we would've done without you, Aunt Mary.
Jeremy has croup, which has not been very much fun. I took him to the doctor yesterday, who gave him a one time steroid dose. He was coughing pretty bad Sunday night, but I think he slept better last night. I had heard that if you rub Vicks Vapor Rub on the soles of your feet then put socks on, it would help a night time cough. So I did that last night, and he's either miraculously better, or it really works. Either way, I'll be doing it again tonight. :)

H.

Sunday, November 11, 2007 9:50 PM CST

Ella is feeling much better, and has been without fever since Wednesday. Thank goodness. They found out that it wasn't a UTI, since her urine culture did not grow anything. I had to take her back in to the pediatrician's office on Tuesday, since she was still running a fever. She noticed that her throat was a little red, and she was mildly congested. So they think it's probably been some sort of upper respiratory virus going on, and thankfully she is now on the mend.
To celebrate, we had her official birthday party yesterday. My mother was kind enough to host the event, and we had a great turnout. Most of my family came, and Ella had a grand time. She had a butterfly birthday cake, and loved it - she was picking it up with both hands and shoving it into her mouth. She got really good presents, and now has more money than I do.
Here are some pictures of our one year old baby girl.
Holly

Monday, November 5, 2007 7:53 AM CST

It's been an interesting weekend.
Josh was out of town, so naturally one of the kids had to get sick. Ella woke up from her nap on Friday with a temperature, and pretty much ran a fever all day on Saturday. I finally called the pediatrician Saturday afternoon, since she had no real symptoms of anything that I could see. He did not think we should wait until today to be seen, so it was off to the emergency room, where it was discovered that her temperature had reached an all-time high off 105.1 - this, in case you're wondering, is when I started to panic just a little. My father and my nephew came to the hospital to stay with us once Josh got home to be with Jem, and after two catheters and a couple of blood draws, she was diagnosed with a urinary tract infection. Hooray for a normal, every day diagnosis! They gave her a shot of Rocephin and sent us home on an antibiotic, and we're supposed to follow up with her pediatrician today, who I am waiting to hear back from as I type this entry. She was pretty much afebrile all day yesterday, but woke up last night around midnight with a slight temperature. Motrin is working fine to bring it down, and hopefully her appetite will pick back up soon. Luckily, we are still nursing so she's getting plenty of fluids and calories through that, since she doesn't feel well and wants to nurse pretty much nonstop.
I think I hear her waking up, so I'll end now.
H.

Thursday, November 1, 2007 1:52 PM CDT

Here are some of the trick or treat pictures.
Jeremy absolutely loved trick or treating. After a little while, Ella started to get bored and hungry, so Josh and I took her back to the van so that I could feed her. My mom kept Jem, and took him to more houses. Since he never seemed to tire of it, she would ask, "Don't you want to go back and see Mama?" Jeremy replied, "No. I don't want to see Mama, and I don't want to see Daddy. I want to say trick or treat to that house."
I feel so loved. :)
We all had a good time, and here are the pictures to prove it!
Holly

11-02
Yes, I realize that yesterday was Ella's birthday and I didn't say anything about it, but I thought I'd wait and report after her one year checkup today. She is 31 inches tall and weighs 25 pounds, which puts her in the 90th percentile for height and the 95th percentile for weight. She is achieving developmental milestones appropriately.
Well, except for walking - she's still not interested in doing that. My back anxiously awaits the day she takes that first step, but my brain absolutely dreads it. It will be officially impossible, at that point, to keep her out of Jeremy's stuff. Which is a big issue around here. Jeremy already pitches a fit if Ella manages to get into his bedroom. He's been known, as of late, to actually SLAM the door in her face if she even gets close to it. And if he leaves the room without shutting the door behind himself? Oh, boy - get out of the way when he remembers, because he will run you over to get there quickly, shouting, "Oh no, mos got (almost forgot) to cwose door before Ewa gets in my big boy woom!"
Yeah. Good times, folks.
:)
I know that makes him sound bad, but he's just very possessive with his toys. For the most part, he's a very affectionate and protective brother to his one-year-old sister.
As long as she stays out of his stuff.
Happy birthday, Ella. I hope you find it in your heart to share your birthday present with Jeremy, because Lord knows he's going to want you to! :)

Wednesday, October 24, 2007 2:02 PM CDT

Well, no news is good news, right?
Jeremy's nutritionist has discouraged us from the homemade formula route, saying that it would be impossible to get the nutrients right in the mix. Which, between us, I find totally ridiculous. I mean, how hard can it be? You can't force all of the "right" nutrients down the throat of a normal three year old, can you? I mean, they don't follow the food pyramid to the letter, either, do they? They did change his formula, which I was pretty glad about. They've changed him to Peptamen Jr. with prebio, which is a formula that has both fiber and a probiotic in it. This, to me, is better than the Elecare, but not as good as making his formula would be, in my estimation. He sees a new GI doc in November, and also a new nutritionist, so hopefully we can talk to them about it. I still would really like to try to at least partially give him regular table food through his tube.
Other than that, everything is great. We got a visit on Saturday from Nana and Grandbob, and Jem was very excited to see them. As were we all! Grandbob had gone through a lot of trouble to procure one itsy bitsy can of formula from the GI docs on Friday, so that we could do a bit of a test run through the weekend just to be certain that Jem could handle the switch before changing him over completely. So they brought it to us on Saturday and hung out for awhile. Also, Nana brought yummy homemade chicken enchiladas - they were all gone by Sunday! Ella ate more of them than any of the rest of us did, though. :)
We went to Sandy Creek Nature Center on Saturday evening for their Halloween celebration. Grandmama, Pawpaw and Matthew were there, and it was a lot of fun. There were lots of animals to see, and crafts to do, and a hayride to go on. Jeremy had a blast, and got to wear his cow costume for the first time, and Matthew wore an Elvis costume - both of them looked really "authentic" - Jeremy was the smallest, cutest cow you've ever seen, and Matthew has the Elvis grimace down to a science. We didn't dress Ella up - we're saving her Holly Hobbie costume for the actual holiday.
Josh and I may actually have a night out this weekend - my friend, Andi, is having her 10th annual Halloween blowout, and of course we're going to try to go. I think I almost have Grandmama talked into coming over to watch the kids. We can't leave until nine, and have to be home before one, but hey - a night out is a night out, you know? We just appreciate the help!
I've put up some new pictures for your enjoyment.
Happy Halloween, everyone!
Holly

Wednesday, October 17, 2007 2:44 PM CDT

Just a note to let you know that the labs we had drawn on Monday were great! Jem's platelets are back to over 200,000 and his liver enzymes are coming down towards normal, although they are still slightly elevated. I cannot even begin to tell you how relieved I am about this.
I've been trying a new thing with Jeremy's feeds the past couple of days or so. I found this great website about making homemade formula for g-tube feeds, so that your kid can get all those fruits, veggies and proteins they need. Right now, I am using baby food with mostly formula because my blender is only so-so, and if it's not totally liquid, it will not go through the pump without alarming non-stop. As soon as we can afford one, I'd like to get an industrial grade blender, so that I can really make table food into liquid (with the help of a little water or formula, of course). I read about one kid whose mom started making this homemade formula, and he jumped from the 5th percentile to the 25th percentile for height and weight in only six months! Also, I've read that it seems to improve their appetites. It has to be better on their stomachs, anyway... plus all that beneficial bacteria and fiber that he's not getting from the formula might help with his digestive issues. I'm going to order one of their formula recipe books, and start consulting with Jem's nutritionist about specific diet restrictions and caloric intake and such. I think doing this would also be a good way to include Jeremy at mealtime. One of the parents on this site even lets her child choose what he'd like to have in his feed for the day. That means that both Jeremy and myself will have some control over what he gets as far as nourishment is concerned - plus, if I make a plate for him (and he doesn't eat it, as usual) then I can just put it in the blender and give it to him through the tube. That means I won't have to throw plateful after plateful of food in the garbage (which is so frustrating, especially when every penny counts). Wish us luck with this endeavor, and keep your fingers crossed that Josh and I can somehow find it in our budget to get that blender soon.
H.

Wednesday, October 10, 2007 3:48 PM CDT

Just wanted to do a quick update after our clinic appointment this morning.
Jeremy's platelets have rebounded - he is up to 112,000 in just two days. This is good, good news. What we are thinking at this point is that the immunizations he received just kind of sent his immune system a shock, opened him up for some kind of virus, and his bone marrow reacted by cutting down on the platelet production. It is possible that he may always react this way to infectious disease - his bone marrow, after transplant and all the chemo that was involved, will never be "normal" so there's really no telling how it will react in certain situations. However, it seems to be stabilizing, and we will have the level rechecked at the beginning of next week to make sure the upward trend continues.
Our main concern at this point is the elevated liver enzymes. Looking back at his chart, his hematologist realized that his enzymes have been this way since 2005. All of the other signs of liver function are basically okay - his liver is functioning adequately at this point. However, we do need to get to the bottom of the consistent elevation of the enzymes. Dr. Alvarado is consulting with and referring us to a liver specialist, and I hope to see him relatively soon. Lots of things were discussed, such as hepatitis, liver biopsy, etc., but nothing will be set in stone until we see the specialist. Maybe this could even have something to do with the eating issues, or so Dr. Alvarado says. That remains to be seen.
I have to be honest here - yesterday, I was FREAKING out. I was just sick at the thought of an HLH relapse, which we all know involves fever, liver dysfunction and dropping blood counts (platelets, hemoglobin, etc.). Thankfully, that is not the case. Even Jeremy's IgG was normal - over 500!! It hasn't been that high in years. I must say that I have been giving him breast milk through his g-tube, because I had read that it contains IgG. I can't help but think that maybe that has at least contributed to his rising IgG levels. I don't know what I'll do about Jeremy when I wean Ella!! Maybe I'll just have to keep nursing her until she's about five, just so I can keep giving Jeremy those good old antibodies through his tubie.
Yeah, that's a joke.
Maybe.
Holly

Tuesday, October 9, 2007 1:01 PM CDT

Well, we are waiting on the results of some blood work we had done yesterday. His doctors and I are very confused as to what is going on with him. He seems to be sick one day, then fine the next.
This all started about three weeks ago - first he had diarrhea for a week straight, but all of his stool tests came back negative. Then he was sick with a cold for a week, and then started with the vomiting last Wednesday. On Wednesday, he threw up all of his feeds and had diarrhea all day long. By Thursday he was fine, but then Friday morning he woke up with that fever and more vomiting with diarrhea.
After my last update, he started tolerating his feeds and did okay through the weekend. Then yesterday, he woke up really clingy and needy, and started dry-heaving and throwing up around 11:00 yesterday morning, and immediately fell asleep in my lap. Anyone who knows Jeremy knows that he never just falls asleep - it's obvious that he's not feeling well. The weight loss is a big concern - Jeremy just can't afford to lose any more weight. Three pounds doesn't sound like a whole lot, but when it's taken off of a 35 pound frame, it's a considerable amount.
So, after speaking with his pediatrician and Dr. Alvarado, we decided to draw some labs to see if they can tell us anything. He had a CBC, BMP, ESR and IgG drawn yesterday. I should know the results of the first three by this afternoon. In one way, I would like for all of the results to be normal. In another way, I would like some clear indication of something - I mean, surely this keeps happening for a reason.
What I'm hoping is that it is as simple as low IgG, and that he just needs another infusion of antibodies. He hasn't had one since November, and that's a really long time for him. I hate the thought of going to Egleston, getting an IV and keeping a three year old still for four hours, but geez, it's better than this throwing up every other day thing that he's been doing.
And truthfully, this kind of thing just makes me paranoid. I mean, he did just get four immunizations only three weeks ago. Coincidence? I hope so.
I'll keep everyone updated as to what is going on when I get more information from his blood work.
Holly


Tuesday afternoon:
I got the results in from Jem's blood work. Everything seems to be fine, except that his liver enzymes are elevated and his platelet count is low - 29,000 as a matter of fact. After spending about two hours on the phone with Jeremy's various doctors, it was decided that he needs to be seen in the clinic. So we are off to Egleston first thing in the morning, so that if Jeremy does, in fact, need platelets, we can get them in a hurry.
Keep donating, Granbob - we may need them still.
H

Wednesday, October 3, 2007 2:05 PM CDT

We are doing well.
Jeremy is really, truly, officially potty-trained. Except at night, of course -- with the night feeds, I'm sure that's a long way off, still. But during the day, he uses the potty almost every time - he's probably had less than four accidents in about three weeks. Yay!
Ella is finally growing up instead of out. She hasn't gained much weight in the past couple of months (and at 25 pounds, she really hasn't needed to!) but has gotten much taller. She is pulling up on everything, and starting to cruise around on the furniture. She'll be walking in no time, I'm sure. She can blow kisses, give kisses, and waves bye-bye every time I pick up my purse (regardless of whether we're going anywhere or not). She's just the sweetest little thing.
The kitty is doing well, and Jeremy just loves him to pieces. He's also pretty good about being gentle with him, which I was kind of worried about.
We've started back on the immunizations with Jeremy - he got two shots in each leg a couple of weeks ago, which was no fun at all. I don't think he's going to willingly walk into Dr. Albert's office again for a long time!
His eating seems to be improving as of late, but I'm not sure why. Maybe it's because he's seeing Ella eat all of the time, and feels a little left out of the whole process of sitting down and enjoying a meal together. At any rate, regardless of the cause, I certainly hope it continues. He's probably not EATING much more, but is starting to try new things, which I think is a big deal. Keep your fingers crossed that this trend continues, and he starts eating me out of house and home - I would just LOVE that!
Here are some more pictures, and I will update again soon.
Holly, Josh, Jem and Ella

***Friday afternoon*****
Jeremy woke up at three thirty this morning, with 104 degree fever, vomiting, coughing and diarrhea. I took him to the doctor earlier today, and they did a throat culture and urinalysis, which I'm still waiting to hear back from. They let me come home even though Jem is moderately dehydrated, and has lost three pounds since our last doctor's visit two and a half weeks ago. They gave him something for nausea, and as long as he starts tolerating his feeds and keeping his formula down, we won't have to be admitted. However, if he continues to throw up, we'll need to be admitted to the hospital until the nausea is under control and he is tolerating his boluses, so that they can keep him hydrated with IV fluids.
Keep your fingers crossed that the Zofran works and his temperature stays down! Josh has an event this weekend, and my parents are out of town - if Jem is admitted, I'll have him and Ella there by myself - which will be NO FUN at all.

Thursday, September 13, 2007 6:37 AM CDT

Hi, everyone!
Well, not much has been going on around here lately. Jeremy has been sick off and on for the past few weeks, and we're going to have his IgG drawn next week sometime. He may need IVIG again. Hopefully not, but we'll see.
Ella is growing and finally sleeping through the night (YAY!). Nap times are still a nightmare, but at least she's sleeping all night. She eats almost anything - Josh and I joke about it all the time. She's our "feast" and Jeremy's our "famine". We'll say, "Give it to Ella. She'll eat anything." Like in the old Life cereal commercials. She's pulling up on the furniture and gravitates towards to fireplace for playtime.
I'm beginning to worry that both of the kids have some sort of allergy to our carpet. They're fine in the mornings, but by lunchtime (after playing in the floor all day) they're both broken out in this terrible rash. I'm going to ask the doctor about it. I hope that isn't the case - there's no way we can afford to put new flooring in. And it's only the living room, too. Of course, that carpet has had it. During the worst of Jem's milk allergy and illness, I bet he threw up in there at least four times a day - there probably isn't an inch of it that hasn't been vomited on at least once. And of course we've cleaned it, and we've had it professionally cleaned, but the stains just come back, and it's carpet so it'll never be completely clean, what with the foam under there and everything. So I wonder if maybe that's it? I don't know. We'll have to see.
In other news, after months of deliberation, Josh and I decided to get a pet for Jeremy. We've always been cat lovers around here, and got rid of ours right before Jem was born. But Jeremy LOVES animals. Every day, for about two months now, we have had to play "Pet Store". Jeremy will take all of his animals out, set them up on the table, and pretend to shop for a pet. Every time he sees an animal, he'll say, "I wish I had a pet (cat, dog, whatever)." So, Josh made a little extra money working an event at the race track, and we were able to adopt a cat from Animal Control. When we went to pick out the kitten, Jem was very excited. And he's so intuitive, too... As we were leaving, Jeremy looked up at me with this sad look on his little face and said, "These animals need home, Mommy." Of course, when we came into the shelter, the first thing he said to the woman who helped us was, "Hi. I'm Jeremy. Daddy said NO puppies." It was so cute.
So, we got a kitten. When we picked it out, we thought it was a female. Of course, the adoption fee covers having it fixed and getting the shots, so they sent it straight from the pound to the vet. After the surgery, they called to tell me that the cat was actually a male, which they didn't discover until after they made the incision to spay the cat and didn't find a uterus. So the poor kitty has an abdominal incision, plus the other. Originally, we were going to name the cat "Suki" which means beloved in Japanese. But with it actually being a boy, we're going to have to pick another name, which is going to be hard, as we have all been calling "her" Suki for about two weeks now. I think the name may stick, because Jem is already stuck on the name now.
She's (I mean, He's) just as sweet as any cat could ever be. He follows us around like a little puppy, and actually sits in Jeremy's lap for long periods of time - he even fell asleep on Jeremy last night. And of course, Jem is just thrilled to pieces to finally, finally have the pet he's been wishing for.
Here are some pictures of Jeremy with his first pet, Suki.
Holly, Josh, Jem and Ella

P.S.
I forgot the most exciting news from the past two weeks!
Jeremy is finally potty-trained! Really, I can't take any of the credit - he did it mostly by himself, it seems. But he hasn't worn a diaper since last Friday (except at bedtime and nap time, of course) and has only had two accidents! Hooray!

Tuesday, August 14, 2007 6:34 AM CDT

We all had a really good time at Tybee this past weekend. Unfortunately, we all came home with colds and sinus infections, but it was worth it to be able to take Jem to the beach.
He absolutely loved the ocean, and he got to hang out with his cousins who are about four months older than he is. My father had also been at a meeting all week in Savannah, so we got to go to his hotel and use the indoor swimming pool and hot tub. I think Jem liked the hot tub more than he liked the pool, actually, although we didn't let him stay in it too long.
The tegaderms we got from Home Healthcare were great for covering his g-tube, and we didn't have to change it out at all. So he got to play in the sand for the first time ever, which was exciting.
On Saturday, we went to Oatland Island Education Center, which is a huge wildlife trail/zoo. Jeremy got to see cougars, alligators, pelicans, a fox, some wolves, a bear, a bald eagle and a bison (along with lots of other animals). That was probably one of his favorite activities, although we were all very hot since it was about 103 degrees outside that day.
Here are some new pictures, and I will update again when we are all feeling better.
Holly

Wednesday, August 8, 2007 4:42 AM CDT

There's not really that much going on right now... Jeremy is enjoying the summer and warm (I mean, blazing hot) weather.
This past weekend we all went to Carrollton and spent the weekend with Nana and Grandma Joy. The kids had a good time, and we enjoyed going to church with them on Sunday morning.
We are leaving this weekend for a trip to Tybee Island, just outside of Savannah. It's going to be a big family trip, with my parents and my sister (plus her four kids!). We are really looking forward to it, as I know all of the cousins will have a lot of fun playing together.
There is going to be a sand castle building contest (kids only!) to benefit cancer research on Saturday, which we're planning on taking the kids to. Jeremy is very excited about building his very first sand castle.
The last time I took him to the beach, I was really worried about sand getting in his g-tube. But I've done a bit of research, and from what I've read, it doesn't seem to be a problem - lots of kids with g-tubes even have sandboxes in their back yards. So, I will try not to freak out about it this time. Plus, I've decided that Jeremy will have to wear a leotard to the beach - just to be on the safe side. I have tried to come up with other, less feminine options, but I'm just drawing a blank. So, much to his father's dismay (haha) our son will be wearing a leotard with his swimsuit on the beach. I'll be sure to take lots of photos.
And please, please, please: If Beth goes into labor while we're gone, someone please give us a call, if for no other reason but to send lots of positive energy her way! We're thinking about you all the time, Aunt Beth!
Here are some new photos.
Holly, Josh, Jem and Ella

Friday, July 6, 2007 5:56 AM CDT

I know it's been awhile since my last update, since a picture-only update doesn't really count. But I finally have news to report.
We've been fairly busy this past few weeks. Jeremy got to go to the zoo again at the end of June. It was a big family trip, with my parents, my sister and all the cousins (except for the newest one, of course - Katelyn is still a little young for that at four months!). Everyone had a great time, and Jeremy pretty much talks about it every day. I really hope to be able to take him to the aquarium at some point this summer, now that he's really old enough to enjoy it.
We had a clinic appointment on Monday with Dr. Alvarado. Jeremy's IgG was tested, and again was low-normal. The very good news about this is that Dr. Alvarado thinks that this situation may be resolved, as Jem has not needed IVIG since November. So we do not need to go back to clinic or have any blood work done for SIX MONTHS!!! Unless, of course, he starts getting sick a lot or something like that. And quite honestly, I have been thinking about asking (since it IS low-normal) about having it done anyway before he starts school in August. Maybe he could use a booster before being introduced to all of those new germs. I will talk with them about it next week, probably.
We did talk about Ella and her risk for HLH while we were there. Dr. Alvarado thinks that it may be a good idea for us to go ahead and have her NK function tested, to establish a baseline for later. NK function (or natural killer cell function) is pretty much zero for kids who have HLH, even if they have no other signs of disease. I will talk to her pediatrician about that, as well.
We went to the fireworks in Athens for the fourth of July, and Jeremy and Ella both loved it. I was a little worried because they are so loud, but neither of the kids seemed to mind. Maybe a little at first, but they very quickly got over it. Ella sat in my dad's lap, staring at the sky, and twisting her arms and legs with excitement and anticipation. Jeremy sat in my mom's lap, and named all of the colors. They're both so cute.
Here are some more pictures from the zoo and from the fireworks.
Holly, Josh, Jem and Ella

Saturday, June 9, 2007 9:38 PM CDT

New pictures!
I'll update again, soon. I promise.
-H

Friday, May 25, 2007 10:00 PM CDT

Well, as you can see, I've changed my mind about the password. It was just a moment of paranoia, and I've actually gotten quite a few emails about it.
We've had an exciting couple of weeks. Let's see...
About three weeks ago, Jeremy started running a fever with general upper respiratory issues. We took him to the doctor and she put him on antibiotics for an ear infection. Then about a week and a half later, he woke up with a rash. A very itchy, red rash. He was diagnosed with hives, which we later decided (after a trip to the emergency room last weekend) were caused by an allergic reaction to the antibiotic he had taken for his ear infection. So, no more penicillin.
All of those issues were resolved by this past Monday, and Tuesday he was scheduled to go in for a pH probe. A pH probe is basically an NG tube that has a little sensor on the end of it. It has to be worn for 24 hours. So we took him to Egleston on Tuesday morning, and they put the probe in. Since we needed to go back on Wednesday to have it removed, we decided to stay with Nana and Granbob for the night. Around 3:30 that afternoon, Jeremy threw up and the probe came out, which means that we'll have to do that test again. Then he had several more bouts of nausea and diarrhea, and it was decided by his doctor that he would need a slow continuous feed through his gtube. We didn't get home until almost ten that night, and then Jeremy woke up again around two in the morning with really bad stomach cramps and more vomiting and diarrhea.
I took him to the doctor yesterday, and she was concerned because she heard very little in the way of bowel sounds. Plus he was a little dehydrated, so she sent us to the hospital for abdominal x-rays, blood work and IV fluids. Everything looked fine, though, so they sent us home around seven last night.
He's been fine ever since, and has tolerated his feeds just fine. We are giving him less over a longer period of time, and we are working our way back to what he was getting.
Here are some more pictures.
Holly

Monday, April 23, 2007 11:36 PM CDT

As a note:
I will be changing the security level of this website in the next day or two...
If you read this site, and would like to have the view name and password, please email me at jembugsmom@yahoo.com, and I will be happy to send it to you.
Holly

Monday, April 23, 2007 6:07 AM CDT

Just a couple of things to tell you all about.
I took Jeremy to his GI doctor last week, and he had not gained an ounce, and only half an inch in height, since last year. Because of this, we are back on the night feeds. It's actually going really well, and it is not nearly as much of a hassle to do his boluses during the day anymore. Hopefully we will start seeing some weight gain soon.
We are also going to start looking for some physical reasons for Jeremy's eating issues. He is going to be scheduled for a pH probe sometime in the near future, which will require an NG tube to be placed for 24 hours with a probe on the end of it that will measure the acidity in his stomach overnight. We;ll take him to the GI lab at Egleston where they will place the tube, then he'll have to have it in for 24 hours, then we'll take him back to have it removed. He will also be having a gastric emptying test sometime soon as well. This may sound strange, but I am really hoping that they find something. It would be good if there was a reason for his aversion that wasn't strictly behavioral.
Otherwise, he is feeling great and acting like a normal three-year-old little boy. Now that Ella is a little more interactive, he is starting to enjoy having a baby sister. He's started being very concerned for her welfare, and really doesn't like it when she cries... he'll pat her and say "Don't cwy, baby... I know, I know." It's so cute.
Ella is growing like crazy. I took her to be weighed the other day, and the child weighs just over nineteen pounds. At less than six months old! She is already wearing size 12 month sleepers, and some clothes. We have started solids, and so far her favorite thing to eat is applesauce. However, she does not like rice cereal at all. But with everything else I've tried, she'll take the spoon from me and stick it in her own mouth. She's also sleeping in her own bed for the majority of the night, now. Thank goodness.
Anyway, I'll post some more pictures, and update again soon.
Holly

Tuesday, March 27, 2007 9:01 PM CDT

Sorry for the lack of updates, but the kids and I spent the last two weeks in Charleston with my friend, Heather. We usually go there whenever Josh has to be out of town for work.
Jeremy had a blast with Zoie, and Heather helped me get the baby onto a "schedule" of sorts. Her feeding pattern is so erratic that it's been really hard for me to keep up with her, but I think we're down to nursing only every two and a half hours (which is still exhausting). But don't get me wrong - I am not complaining about a kid who wants to eat all the time. Believe me, I'm grateful. But she won't take a bottle at all, and feeding her and spending time with Jeremy at the same time is really hard.
And she won't sleep unless she's sleeping with me. I swore up and down that I wouldn't do that again. But today, I actually bought a bed rail for MY bed to keep her from falling off of it. I've totally succumbed to co-sleeping for convenience. But I swear it was an act of desperation. Before this, she wouldn't sleep for longer than thirty minutes at the time - on good days. Usually, however, she woke up within five minutes of being laid in her crib. And then wanted to nurse again for another 45 minutes. It had gotten to the point that every time she woke up, Jeremy would hear her over the monitor, and shout, "Baby Ewa's awake!" then he would race me to wherever she was and beg me not to pick her up.... "Put down her, Mama! Don't touch her!!"
So, enough is enough, right? And now she sleeps with me.... and poor Josh sleeps on the sofa. Well, not EVERY night, though.
I'll post some new pictures from our trip to Charleston.
Holly

Thursday, March 8, 2007 6:53 AM CST

Just wanted to post to let everyone know that everything is the same here. We're still adjusting to having a new baby in the house, and Jeremy is really doing well. I enrolled him in the local school system here, as they have a program for kids who require "extra care" (because of the g-tube). So he'll be going to school (even getting picked up on the bus!) and they'll be doing his OT and Speech through the school system. So that's pretty exciting.
We celebrated Jem's third birthday at McDonald's this past weekend, and everyone had a really good time. I'll put up some pictures from the party for you to enjoy.
Holly

Monday, February 26, 2007 8:59 AM CST

Well, it's been an exciting week.
I spent most of the day last Thursday in the emergency room, and had an emergency appendectomy on Friday morning. I was released from the hospital on Saturday, and I am feeling a little better. I cannot do any heavy lifting for a month, however. So, Nana and Granbob picked Jem up from the hospital on Friday, and he will be staying with them for most of the week (Thank you, thank you, thank you! I hope he's a good boy!). Miss Ella stayed with me at the hospital the whole time, because she will not take a bottle AT ALL. Josh was off this past weekend, and got a lot done around the house so that I don't really have to do anything except take care of the baby this week. My pain is pretty well controlled, although I still have to take my pain medicine regularly. I'm hoping to stop taking it very soon, because it can affect your milk supply, and I don't want that. I have to follow up with my surgeon sometime this week, and will call to make that appointment today.
I've decided that the best thing about appendicitis is that you can only have it once. In fact, that's the ONLY good thing about it at all. :)
I will post more later.
Holly

Saturday, February 10, 2007 9:11 AM CST

Not much news to report from here.
We have all been sick with some sort of cold since Christmas (at least it seems that way). Jeremy ran a fever of over 103 last week, and I took him to the doctor. He had an ear infection and an upper respiratory infection, so his pediatrician put him on an antibiotic. Now Ella is coughing and has a lot of congestion. And Josh and I don't feel well, either.
Not too much fun.
But I have managed to take some pictures, and thought I'd put them up to share.
Holly, Josh, Jem and Ella

Sunday, January 7, 2007 2:57 PM CST

All is well here.
Jeremy is actually growing, and is now over 34 inches tall. He might actually outgrow 2t clothes by his third birthday. Hooray!
Ella is REALLY growing, and is now tipping the scales at almost twelve pounds at only nine weeks old. She's already gained almost five pounds!
We had a wonderful Christmas, and Jeremy really knows what getting presents is all about now. He does the funniest thing when he opens a present. He'll start tearing the paper, and as soon as he catches a glimpse of what's underneath, he'll exclaim, "Wow! Nice!" Whenever he sees anything wrapped, he'll say, "A present? For me?" (Of course, Jeremy. ALL of the presents are for you.).
Our friends Heather and James were down from Charleston this past weekend, and just left this morning. I swear that being around their daughter, Zoie, makes Jeremy eat more. Today for lunch, he ate a WHOLE peanut butter and jelly sandwich. They got Jeremy one of those V-Smile video games for toddlers, and I am very proud to say that the games are way too easy for him. :) But he loves it, anyway.
I'm putting up some new pictures that Heather took while she was here.
Holly, Josh, Jem and Ella

Wednesday, November 22, 2006 2:37 AM CST

All is well with us.
Ella has already surpassed her birth weight, and now weighs a healthy 7 lbs. 10 oz. at only three weeks old! She she slept a lot for the first two weeks, and I even had to wake her up to feed her there for awhile. That time has passed, however, and now we are all a little sleep deprived.
Jeremy is doing well, except for the fact that we found out today that he has c-diff again. They are putting him on antibiotics, and when he gets done with those, he'll be on a probiotic. Hopefully we can get it to clear up now that he's having regular infusions of IVIG. Also, we found out that his liver enzymes are quite elevated. I have to take him in for more bloodwork tomorrow, and we'll know more about what to do when we get those results back.
I'm really just updating today to let everyone know about the holiday cards that are being sold to benefit and raise awareness for Histiocytosis. And Jeremy's picture is on the front of them, as well as some pictures of other Histio kids. You can go to www.nottheactor.com/Holiday.htm to order these cards. They are a little expensive, but I believe 80% of the proceeds go for research for Histio related illnesses, and as you know, this disease gets no federal funding for research because of how rare it is. So if you are anything like me, you've probably put it off and haven't bought any Christmas cards yet. But here's your opportunity to get your cards, benefit Histio and raise awareness all at the same time!
Holly, Josh, Jeremy and Ella

Wednesday, November 15, 2006 5:48 AM CST

Just a quick update this morning.
Things are going well here, and Jeremy has adjusted to having a little sister around the house. He is always very concerned with where she is, what she's doing, etcetera. He's already showing a little bit of a protective streak as far as she's concerned, too. Last week, my aunt stopped by to see the baby. Naturally, I let her hold Ella, which made Jeremy a little upset. He kept saying, "No, that's Mama's baby Ella! That's mama's baby Ella!" Every once in awhile, Jeremy will come up to use when I'm holding her, put his hands on the sides of her heads, and whisper, "Oh, beautiful baby Ella. Baby Ella brother." So cute.
Jeremy had his first trip to the zoo last week, and had a fantastic time. In fact, he was really able to show off his animal knowledge on several different occasions. For example, when they came to the Australian exhibit, Jeremy went up to one of the cages with a bird in it and said, "Kookaburra!" before Josh even had a chance to tell him that that's what it was. He also got a little toucan figurine in the gift shop (it was the only thing he wanted), and when they came out of the zoo, a man asked Jeremy if he went to the zoo. Jeremy said, "Yes, to the zoo" to which the man replied, "Well, hey, I like your parrot." Jeremy looked at the toy in his hand, then back up to the guy and said, "No, toucan." Smart, smart, smart!
My mother-in-law was released from the hospital last week, and although the healing process is slow, she is getting somewhat better. Please keep her in your thoughts and prayers.
Holly, Josh, Jem and Ella

Sunday, November 5, 2006 7:48 PM CST

Well, we're back home, finally!
Ella and I were released from the hospital today, and we are both doing fine. I am still a little uncomfortable from the surgery, but I am getting better every day. And the baby is just wonderful!! She is a very good baby, and hardly ever cries. She is nursing beautifully, and gaining weight already! She was born at 8:06 a.m. on November 1st. She weighed 6 lbs, 9oz (2 ounces bigger than her brother!), and was 19.25" long. She has an abundance of dark hair, and it is already so long in the back that it goes past her neckline a little. She has Josh's eyes and his nose, and she has my mouth and my ears.
She is just beautiful, and here are some pictures to prove it!
Hope to update again soon, but I suspect I'll have my hands pretty full. I promise that I'll do the best I can.
Holly, Josh, Jeremy and Ella

Friday, October 27, 2006 6:47 AM CDT

Just wanted to write a quick update -
Jeremy did get into the speech rehab program at St. Mary's Hospital, and had his first appointment this past Monday. I am very pleased with the way the appointment went, and I like the speech therapist very much. She seems much more aggressive than any of the therapists that Jeremy has seen in the past, thank goodness. She wants to see him at least twice a week to start with, then maybe move up to three times a week. She also wants to talk to his physicians about his history and whether or not we should try him on some medication that stimulates hunger, since she suspects it could be a "signal" problem. He goes back to see her next Monday. She did say that his speech is very advanced, and this is a good sign as far as his eating recovery potential is concerned.
I am going for an anesthesia consult today, as I will definitely be having a c-section. She isn't breech, but there are other concerns that have made me to decide to go ahead with the cesarean. I go next Tuesday (Halloween) for pre-op, then will be having the c-section on Wednesday. So, less than a week to go. We're so excited!
Josh's mom had surgery on the 18th, and is still at Emory. She is better, but still having a hard time. Please keep her in your thoughts! She will hopefully be released sometime next week.
Holly, Josh and Jem

Monday, October 16, 2006 1:03 PM CDT

The transition to big boy bed is complete!
Jeremy has been sleeping in there for four nights now, and is doing just fine. We did manage to lower the bed a bit, and now he can climb in and out of it by himself. He loves his new room, and plays in there all the time. Also, when we mention 'night-nights' now, he grabs his silky and runs to the bed. Now, he doesn't fall asleep right away, of course. But he is actually going to bed without much of a fight.
We stopped rocking him, and took away the bottle as well. He doesn't really drink anything from it, anyway, and would have been weaned already if it weren't for the other eating issues. But lately I've been really worried about what that last bedtime bottle might be doing to his teeth, since we can never brush them the way we're supposed to. I mean, we brush them twice a day, but only for about 30 seconds because of the terrible tantrums he throws whenever you get a toothbrush near his mouth. He'll put his hands over his mouth, cry, and scream, "Yucky yucky yucky" over and over until we're finished. Brushing his teeth is really a two-person job.
Which brings me to my next announcement:
I think we are going to be able to get Jeremy into the pediatric rehab program at our local hospital for his feeding issues. He was seeing a speech therapist through the Babies Can't Wait program, but they could only come twice a month, and it was agreed that he needs more intensive therapy than what they could offer. In fact, she seems to think he needs therapy at least two to three times a week to fully address his feeding issues, which she believes are strictly behavioral. So, I had him discharged from the whole Babies Can't Wait program, and am now waiting on the referral to go through for the rehabilitation program at St. Mary's Hospital. I spoke pretty extensively this morning with the speech therapist at their clinic, and she seemed very nice. Hopefully this will work out, because our only other option is to take him into Atlanta several times a week, and with a new baby and everything, I just don't know if I can handle it. But with my dad here, this will be really manageable. We may even be able to take turns taking him!
Whenever my parents are around, Josh and I are chopped liver, I'm telling you. In fact, when they were bringing him home last weekend, he CRIED when they pulled into our subdivision. Yesterday, they stopped by, and when my dad told Jeremy that he had to leave, Jeremy said, "No, Pawpaw. Stay. Go sleep." I promise that we don't mistreat the child - I think they must just spoil him rotten. :)
Holly

Thursday, October 12, 2006 6:03 AM CDT

I have some good news to report!
I went to the doctor yesterday, and the baby has actually turned. Since she is no longer breech, there is a good possibility that I will not have to have another c-section this time. We are going to keep my surgery scheduled, just in case she decides to turn back the other way. But hopefully that will not happen. We also know that she weighs about 5 pounds, nine ounces. She has lots of hair, which we could see floating around her head on the ultrasound. And she's already practicing breathing, so it shouldn't be much longer now.
Their rooms are almost done, and Jeremy's room is just awesome. I don't know if he's going to sleep in there, though. We tried a practice run the other night, but it didn't work out very well. His bed is an antique iron bed, so it's really high. And I was afraid to leave him in there by himself because if he fell out, I'm worried that he may hurt himself. So right now, we're trying to figure out a way to take the box spring out so that we can lower the bed a little bit. Josh is going to pick up a sheet of plywood today, which we will have cut to size to fit under the mattress. Hopefully that will work.
I was putting everything on the changing table the other day, which we still use for changing Jeremy's diapers. So I have big diapers stacked on one side, and tiny diapers stacked on the other. I have to admit that I shuddered just a little. :)
Jeremy talks about "Baby Ewa" all the time, and he seems to be excited about being a big brother. I'm sure he'll be happy at first, but I'm betting that the novelty will wear off pretty quickly.
Holly, Josh and Jem

Thursday, September 28, 2006 7:28 AM CDT

Still nothing new to report. Jeremy is doing fine, and talking up a storm. Josh has an event at Road Atlanta this weekend and has been there pretty much non-stop for the past week or so. I went to the doctor on Monday, and we've scheduled the c-section for November 3rd. It looks like Jeremy will have his new little sister in a little more than a month (if SHE decides to wait that long, that is)!
We're finally starting to put Jeremy's new room together - we've decided on the paint, finally, and my brother is going to help us hang some wallpaper border in there with Tonka trucks on it. My parents found an antique iron bed for Jeremy, so it looks like he'll be going into a twin size bed after all. My dad has already sanded most of it down (Thank you, Pawpaw!) and my parents got the paint for it yesterday. We are going to paint it blue, and then paint a wooden dresser to match. I think it will be really cute. My mom is going to make some curtains to go in there (I wish I could sew, but I just can't), and I'd like to get a bedside table for him. So all that's really left is getting the mattress for his bed (which I found for really cheap at Sam's) and a comforter set. I'm so excited about his new room - I've been trying to really build it up for him. I want him to feel like he's moving up instead of being booted out, you know?
November the third is on a Friday, so Josh will be off the weekend after the baby gets here, and he'll keep Jeremy at home. Then my mom will take off the following week and keep Jeremy with her, and then Josh will take off the week after that to stay at home with all three of us, because we'll get Jem back that week, and quite frankly, I know I won't be up to keeping a toddler and a newborn a week after a c-section. We've also decided that Josh will take Jeremy to the zoo sometime that week, because he knows all of the animals, and would absolutely love it. Plus, the alone time with Daddy will probably be good for him after the big change of bringing the baby home. It's really important to us that he doesn't feel left out in all of this. I hate that I will miss his first trip to the zoo, but I know there'll be plenty more trips for all of us to enjoy together.
I'll keep you posted!
Holly

*****Just a note:
My C-section is now scheduled for 7:30 a.m. on November 1st - they didn't have space on the hospital surgery schedule for the 3rd. So, less than a month away. I think we'll actually be ready!

Thursday, September 21, 2006 6:02 AM CDT

Jeremy is doing really well. We will start his immunizations next week, so that hopefully I can get him into some sort of part-time day care by the time Ella gets here. I really think that the social interaction will be very good for him at this point, and it may even improve his eating. He seems to eat more when he's at my sister's house, and she has twins who are four months older than he is. It kind of gives him something to model after, I guess.
I keep playing with the idea of potty training, but I just don't think he's ready yet. He's not showing any signs of wanting to use the potty, and in fact, is opposed to sitting on a potty at all. Besides, I'm afraid he'll just regress when the baby gets here (which I hear is very common), so really, it can wait. How much harder can it be to have two in diapers, anyway? (haha)
I am doing well. The countdown has really begun - I am 32 weeks as of yesterday. Jeremy was born at 36 weeks, so if she comes as early as he did, we only have FOUR more weeks to get ready. I have yet to get Jeremy's room painted, much less get a toddler bed and a dresser for him. She'll be sleeping in the bed with us for the first month, anyway, so I guess we still have a little time. I would like to at least have it painted before her arrival, so that she won't be around paint fumes (I know people say that it isn't dangerous, but I still don't think it's a good idea to have a newborn around stinky paint fumes). And since she was breech at my last checkup, it looks as if I'll be having another c-section (which is the big reason she'll be sleeping with us).
I'll try to post more pictures as soon as I have the chance. I am going to take Jeremy this weekend to have some professional pictures done (the first since he was 9 weeks old!) - I haven't been able to bring myself to do that until now because of all of the other kids that sit on that piece of carpet (and sneeze and God-only-knows what else all over it). And you know they never clean it. But I believe his immune system is strong enough now to have his picture taken. :)
Holly, Josh and Jem

Tuesday, August 29, 2006 5:41 PM CDT

I am only going to say one thing in this entry about Jeremy's health issues. Everything else is going to be about some of the cute things he's doing right now. I realized today that I don't post often enough about all of the normal, toddler things that he's doing, and I really should. So, here goes:
On the medical front:
As expected, Jeremy's IgG was low when we went to clinic last week. So we will have to go in this Friday for IVIG - the IV infusion of antibodies which takes four hours to administer. Thank you, PawPaw, for going with us. I know I wouldn't be able to manage it on my own in my current condition.
Everything else:
Jeremy has started playing these little games with himself. It is really the funniest thing. He'll line up some of his stuffed animals on the couch - last time it was a chicken, a monkey and a frog. Then he'll pick them up, one by one, and quiz himself. For instance:
He picks up the frog and says:
"Is this a chicken? Nooooo (shakes head).
Is it a monkey? Nooooo (shakes head).
Is it a frog? Yes! (nods head excitedly)."
Then he'll pick up the the chicken, and start over. Always with the wrong answers first, and ending with the right answer.

Then, on the way home the other day, Jeremy was in the backseat with his silky blanket (the only security item he's ever been attached to except for his thumb). So he had this little blanket over his face, and said,
"Where is Jeremy?
Is he in his bed? Nooooo...
Is he on the couch? Noooo...
Is he in the silky? YES!!!"

One last thing. Jeremy has actually started singing some of the songs he's learned, one of which is "How Much is that Doggy in the Window." Except for, of course, his own little twists. Everyone knows this song, with the verses and the barking, etcetera. Only now, Jeremy will sing the song and substitute different animals for doggy. I, of course, am expected to make the corresponding animal noise, and change it accordingly. We can sing this song for literally thirty minutes, over and over, using all of the different animals that Jeremy knows. Here's one version:
Jeremy: "How much is that snake in the window?"
Me: "SsssssssSssssss"
Jeremy: "The one with the waggely (sp?) tail?"
Me: "SssssssSssssss"
Jeremy: "How much is that snake in the window?"
Me: "SssssssSssssss"
Jeremy "I do hope that snake is for sale."
Me: "Even if it is, you're not gonna get it."

I've posted some new pictures. Enjoy!

Holly

Wednesday, August 16, 2006 7:35 PM CDT

Everything went well at the dentist's office this morning.
They cut his gum on the side that was swollen, and then on the other upper gum as well to allow that molar to come through. They also did his cleaning.
He was under conscious sedation, plus novicaine and laughing gas, so he didn't feel too much. They didn't let me stay back there with him, though. I'm kind of relieved about that, actually.
Does anyone except me think it's totally ridiculous that you are supposed to have your child at the dentist by the time they're a year old, or within six months after they cut their first tooth? I didn't take Jeremy for the first time until he turned two, and I thought that was pretty good on my part. They also want me to start flossing his teeth - they said it needs to be started as soon as they have two teeth that touch. What? Jeremy won't even let me BRUSH his teeth without pitching the most horrible tantrum. I think we'll have to skip on the flossing for now.
I have to take him back in six months for another check-up and cleaning. They will also put some sealant on his back teeth at that time.
Hopefully we'll be alright without the flossing. If not, I suppose they'll have to give me a tank of nitrous oxide to take home with me and administer every night so that I can get the job done. :)
Fortunately, Jeremy doesn't seem to be all that uncomfortable. I was instructed to give him Tylenol and Motrin, alternating every three to four hours as needed for discomfort. That seems to be working very well. He was very active and playful this afternoon. He even ate a whole bowl of noodles and half a banana!
I had read at some point that one of the medications Jeremy had to take - Cyclosporine - could make your gums "tough". Since Jem didn't cut his first tooth until he was almost a year old, and in light of these other problems, I asked the dentist about it today. She told me that she has a patient who had a liver transplant, who has to take Cyclosporine daily. They've had to cut her gums away from her teeth on multiple occasions. So, she agrees that maybe this could be why he's having these problems with the molars coming through. Hopefully they'll come on through now with no further problems.
Holly

Wednesday, August 9, 2006 8:23 PM CDT

Just a quick note for a tooth update.
I took Jeremy to the dentist yesterday (they had a cancellation and so they saw him earlier than planned) and we got some good news. It isn't a tooth at all. It's something called an eruption cyst, which isn't THAT uncommon, fortunately. From what I understand, it is almost like a big bruise under his gum. It was caused when the molar he was trying to cut broke some blood vessels under there.
Usually, they go away on their own. However, they can be painful. And Jeremy doesn't really need another reason not to eat. So, we have decided to give it a week, and if it's not any better, we'll go in on Wednesday to have it lanced under conscious sedation (versed and laughing gas). They'll do his cleaning at the same time.
Keep your fingers crossed that it will just go away by itself. Without the procedure. I don't want his feeding problems to get WORSE, for Pete's sake.
Holly

Friday, August 4, 2006 1:09 PM CDT

Sorry for the delay.
We all got home safe and sound this past weekend. After being gone for two weeks, there was a lot to catch up on, but we're finally almost back to normal.
We had a great time in Charleston. We did take Jeremy to the aquarium, which I think he really enjoyed. Although he seemed to be a little scared of the really big tank. The beach, however, was kind of a bust. I couldn't get the dressing to stick to Jeremy's skin, so we didn't play in the ocean or the sand, for fear of sand getting in the stoma of his g-tube, which can cause a lot of irritation to the site. He still talks about the ocean, and the big fish, so at least he remembers going.
I had to make a dentist appointment for Jem as soon as we got back, because one of the 2 year molars he just cut is coming in very discolored (and by that, I mean pretty much black). Not sure why, but I think it's probably related to all the chemo he had as a baby, which can have a negative impact on their tooth buds. The dentist can't even SEE him until October the fifth. I just hope it's not bothering him too much, and can wait until then.
We're on the home stretch as far as the pregnancy is concerned; I'm 25 weeks today. Which means I'm getting pretty antsy about having everything done before she gets here. I went to the doctor today, and aside from having a low iron count, everything seems to be fine. In fact, according to their measurements, she's about two weeks ahead on growth, which is a relief considering the SUA.
We still have to get Jeremy's new room ready. And all he really needs is a new bed to sleep in. We'd also like to paint it, and have him sleeping in there by the end of September. And because the nursery is still pretty much set up, there isn't a lot to do in there except for buying a new glider. I would reuse Jeremy's, but I'm telling you: After rocking him pretty much every day for two years, that thing is worn out. One of the springs even came out of the seat! Oh, and we've got to find a chest of drawers to put all of Ella's clothes in - and thanks to Heather, there are plenty of them! I think I came home from Charleston with seven bags of girls' clothes that range in size from newborn to 4t. Thank you, thank you, thank you!!! :)
So really, not THAT much to do. But considering Jeremy was a month early, we're running short on time (and I am quickly losing the ability to be a big help in getting it all done). But, I'm sure we'll manage.
I'll post pictures from our trip as soon as I can.

Wednesday, July 12, 2006 12:51 AM CDT

We're doing well here. Jeremy's appetite seems to have picked up a little over the past week. Still nothing to get excited about or anything, but a slight improvement. I expect it to go the other way any day now.
Josh left yesterday to go to Salt Lake City, then on to Portland. He'll be gone for almost three weeks, and we miss him already!
Heather, my friend from high school, will be coming to pick us up this weekend, and we'll go to Charleston and stay for a couple of weeks until Josh gets home. I've already gotten Jeremy very excited about seeing the ocean and visiting the aquarium. Also, they have a swimming pool in their neighborhood, and I hope to take Jem swimming at least every other day. He just loves the water.
So, probably no more updates until we get home. I'll post some new pictures for you to enjoy until then!
Holly

Sunday, July 2, 2006 6:18 AM CDT

We've had an exciting weekend.
Friday night was spent in the local emergency room with Jeremy. No, he isn't sick. He just has a terrible, negligent mother. Here's what happened:
Ever since I was about three months pregnant, I have had the worst insomnia. I don't have any trouble falling asleep, really, but I wake up every morning around 2 a.m. and can't go back to sleep. Since I am pregnant, and there are few things I can take to remedy this, I keep a bottle of Tylenol PM on my bedside table. And every once in a while, I'll just take a couple of them as soon as I wake up at two o'clock, so that maybe I can get another couple of hours of sleep before Jeremy wakes up. My doctor did prescribe Atarax for me, but I only need to sleep two or three more hours - not fourteen or fifteen more. So, Tylenol PM it is.
Well, on Friday afternoon, Jeremy was in our bedroom playing on the bed, which he finds very entertaining for some reason. And to make a long story short, he found the CHILD-PROOFED, CLOSED bottle of Tylenol PM on the bedside table. And while my head was turned for maybe half a second, he somehow managed to open said bottle. When I turned around, there were little blue pills all over the bed, and Jeremy had a very strange expression on his face. And while I didn't think he had eaten any of them, because he really didn't have the time, I couldn't be absolutely sure. I mean, how long does it take for a two-year-old to put something in their mouth? Not long, in my experience.
So, I quickly put all of the pills back in the bottle, looked at the drug facts on the side, and did some quick math. Hmmm... 3x the acetaminophen for his age, and twice the Benadryl. Maybe I should call the doctor.
I called Jeremy's doctor, and they told me to call Poison Control. I called Poison Control, and we had a lengthy conversation, trying to ascertain whether or not Jeremy had actually taken any. Poor Josh walked in the door from work to hear me saying, "I think my two-year-old may or may not have taken one or more Tylenol PM." Since I could not tell them for absolutely certain that Jeremy had not taken any, we were told to take him to the nearest emergency room. In fact, they got all of our information and called the hospital, to let them know we were on the way.
The triage nurse at the hospital took all of Jeremy's vital signs, which were totally normal. With the exception of his temperature, which was 101, rectal. This is when I really started to doubt that Jem had eaten any of the pills. I mean, would he still be running a low-grade temp an hour after taking at least three times the Tylenol he's supposed to have? I seriously doubt it. Also, he was not acting sleepy in the least, and I know from experience the Benadryl KNOCKS HIM OUT. But, because we were already there, we had to follow through with hospital protocol for suspected overdose. Which was:
Two ounces of charcoal put into his stomach, to absorb the drug if there was any in there. Also, two blood tests, three hours apart, to check the acetaminophen level in his blood. So, after about three hours in the emergency room, two ounces of charcoal, and two negative blood test results, we were sent home.
Turns out, he didn't take any after all.
I should've known. I mean, he doesn't even put food in his mouth, for Pete's sake! Logic would dictate that he probably wouldn't even let me SHOVE a pill down his throat. Much less pop it in there and swallow it on his own.
Holly

Monday, June 19, 2006 6:30 AM CDT

We are doing really well here. Jeremy is growing like a weed, and talking more every day. He's started working with a speech therapist for his feeding issues, but no progress as of yet. He is cutting his two-year molars right now, so that could explain some of it. His mouth bothers him a lot. We are really trying to build him up for his upcoming role as "big brother" but I am interested to see how he will react to having a new baby around the house. He's kind of set in his ways, being the only child for so long. But we'll see.
As for the pregnancy, well, you know nothing can ever be strictly textbook for us. Everything looks good, and the only abnormal finding so far is that the baby has a two-vessel cord instead of the normal three-vessel cord. This is known as SUA, or single umbilical artery. Normally, there are two arteries and one vein in the umbilical cord, but with us there's only one of each. Although this abnormality is sometimes linked with chromosomal problems, Dr. Rosemond (the specialist in maternal and fetal medicine) doesn't think that's the case with this baby. He believes this is just an incidental finding, because everything else on ultrasound looks to be totally normal. And it does happen with normal pregnancies about 50f the time. He's so confident that everything is okay, he's released me from his service for the remainder of the pregnancy, unless we see anything on ultrasound later that would warrant another visit with him.
We've also been told (by three different people) that it's definitely a girl! We hope to welcome Ella Caroline into the world sometime around November 23. And if she waits until the 25th to get here, she'll be born on my birthday.
How cool would that be?
More later!
Holly

Friday, June 2, 2006 1:56 PM CDT

I don't think I've updated since Jem's last appointment with AFLAC, so here's the report:
All of his counts look good. His IgG was 430, and since he isn't ill, we're not going to do any IVIG unless it gets below 300. So, probably another month or so before we have to do that again, with the way that count falls.
Dr. Alvarado is concerned that Jeremy isn't getting enough calories with the feeds that we're giving him. He didn't ask us to change it or anything, he just didn't seem very happy about it. I will bring it up at his next GI appointment.
He was a little worried about the gray hair. I say this because, when I mentioned it, he practically knocked Jeremy down in order to get a good look at it. He did mention a few (rare, autosomal recessive) disorders that cause gray hair and can be confused with HLH, because of similar symptoms. He's looking into it, and we will discuss it more at our next appointment.
In the meantime, Jeremy will have all of the genetic tests for HLH redrawn. I had asked specifically for the MUNC13 test, because Jeremy hasn't had that one yet. But Dr. Alvarado told me that sometimes the results of these tests are thrown off if you perform them once treatment has already started. And since Jeremy started chemo so soon after diagnosis, the results may have been inaccurate. He's going back for those in a couple of weeks.
All of these blood tests have given Jeremy an intense fear of anything medical. He had a cold last week, and when I took him to the pediatrician, he wouldn't even sit on the scale without screaming bloody murder. Over the weekend, we decided that Jeremy either needed a haircut or a new dress, and so I took him today to have it trimmed. He started screeching as soon as we put him in the chair, saying over and over, "No boo-boo, Mama! No boo-boo!" He wouldn't let me hold him for it, either. Poor baby. I know it's terrifying for him, but it's so darn frustrating for me. It makes me wish that we would've just gone ahead and gotten the stupid port months ago. He used to be so good at the doctor's office. Maybe the "white coat syndrome" never would've developed if he had easy venous access. He's such a hard stick, so they always have to poke him three or four times for each blood draw. I suppose it's enough to give any two-year-old some sort of phobia. I just hope he outgrows it.
Anyway, I will keep you posted.
Holly, Josh and Jem

New Photos added 6/5/06

Tuesday, May 9, 2006 8:59 PM CDT

Jeremy's eating has once again taken a turn for the worst. He is still enrolled in the Babies Can't Wait program, and will be seeing a speech therapist once a month through them. Also, he is being referred to an outpatient rehab center through CHOA, but I'm not sure when he'll start that. We're pretty sure at this point that it's strictly behavioral, because when Jeremy WANTS to eat, he can eat and swallow pretty much anything. So that rules out any physiological reason behind the lack of eating. Hopefully some strong therapy by someone who knows what they're doing (read: Not Me) will help.
Some other health news of interest:
A few months ago, I noticed that Jeremy was getting gray hair on the back of his head. I pretty much chalked it up to all the chemo, because I've heard that once it's fallen out because of chemotherapy that there's no telling what it'll look like when it comes back in. Then it seemed that there was more and more, and now he has little patches of gray scattered around the back of his head, and I'm starting to see gray hairs here and there in the rest. So, because I am a glutton for punishment, I decided to look it up on the internet.
Needless to say, what I read sent me into a panic (being pregnant does not help), and I made an appointment with his pediatrician as recommended by the ONLY website I could find pertaining to gray hair in toddlers. Some possible reasons for gray hair listed by drgreen.com are:
1. A vitamin B12 deficiency
2. A thyroid problem
3. A rare immune syndrome called Vogt-Koyanagi Harada syndrome - specifically if the gray hair is accompanied by white spots on the skin called vitiligo (and Jeremy does have maybe three or four of those on the back of his neck)
Naturally, I saw "rare immune syndrome" and felt that he should see someone right away. So, he saw Dr. Albert (his pediatrician) on Wednesday. She doesn't THINK it's anything to worry about, but Jeremy will be seeing an immunologist on the 18th of this month, anyway. Dr. Firschein (the immunologist) needs some bloodwork, so I tried to schedule the appointment after the one he has at AFLAC on the 15th. That way, they can stick him there and get everything they need, and he'll only have to be stuck once (well, with his luck, probably three or four times). He was going to AFLAC for a regular visit, because they need to check to see if he needs IVIG again (probably will, since his IgG was 530 the last time it was checked three weeks ago, and 500 is as low as we can allow it to get). So, fingers crossed that this is nothing but extreme premature graying. Which it very well could be.
That's about all the news on the Jeremy front. As for me, I am finally through the first trimester. All of the first trimester screening that looks for genetic disorders such as trisomy have come back just fine, so that's a relief. We still do not know if we will be able to test prenatally for HLH; I will find out more at Jeremy's AFLAC appointment this month. I am seeing a specialist in maternal and fetal medicine, who will be following me closely throughout the pregnancy. I have my next appointment with him in six weeks, and I have to see my regular obstetrician every two weeks from here on out.
I'm telling you: It is HARD to keep up with all these appointments. And my dad has been a huge help with keeping Jeremy so that I don't have to take him with me to any of mine. Thanks, Pawpaw!
Thanks for checking in on us!
Holly, Josh and Jeremy

Tuesday, April 11, 2006 6:50 AM CDT

Sorry it's been so long since an update, but really, there's nothing much to report.
Except for the fact that Jeremy's going to be a big brother!
We are all very excited about it, even though we know there's a risk (25%) that this baby may have the same disease that Jeremy had. It's scary, but we are just trying to be optimistic about it for now. And since I'm only about nine weeks along, it will be a long time before we know anything for sure about possible HLH. There's no way to test for it beforehand, because all of Jem's genetic tests came back inconclusive. So, I just pray that the baby will be healthy. And if that's not in the plan - if the baby is sick - then I hope that we are all given the strength to get another child through all of the treatment that the cure will involve.
So far, everything looks good. My mom and I even got to hear the heartbeat already! When I brought the ultrasound picture home, I gave it to Jeremy and said, "Look, Jeremy, it's a picture of our new baby!" and Jeremy held the picture up to his face and said, "Oh, beebee. Oh, beebee." over and over. Then he laid it down on the couch, put his face on top of it and said it again. He's just the cutest little thing.
Jeremy had an appointment with GI on Friday, and they said that he's definitely becoming G-tube dependent (because when he gets hungry, he'll pull on his tube and say, "Eat"). So, he's off the night feeds, and down to four four-ounce boluses per day. I have to say that his eating seems to have improved since we started this on Friday, because yesterday he ate about three tablespoons of pasta for lunch, then last night he had a whole chicken nugget (with ketchup, of course) and two tangerine slices! He's also going to be seeing a speech therapist through CHOA's rehab department. Maybe we will see some big improvements soon!
That's all for now, but I will try to start updating more regularly in the future. I can't put anymore pictures up for now because of a problem with our computer, but that will be fixed soon as well.
Love,
Holly, Josh and Jem

Friday, March 10, 2006 8:48 PM CST

Nothing new on the medical front to report. Jeremy still isn't eating very much, although he does nibble a little more than he did a couple of weeks ago. His stomach seems to be fine (well, except for the tube sticking out of it), and he still throws up occasionally, but I suppose that's just par for the course.
We did celebrate his second birthday this week, though. Twice, even!
Jeremy's Aunt Beth, Uncle Damien and Cousin Lucie came in from France this past Saturday, so we went to see them at Nana and Granbob's on Sunday evening. Jem and Lucie seemed to get along fine, although Jeremy is a little on the rough side and so I tried to watch him like a hawk the whole time. Lucie is a little smaller than he is, and honestly, I was afraid he might hurt her. They played well together, and we watched a Baby Einstein DVD. We also had cupcakes with candles and sang the birthday song to him, and I have to admit, Lucie outdid all of us with the singing! She is very smart and very cute, and I am happy that they have finally spent some time with one another.
Then, last night we had a little birthday party here for him. Okay, not such a small party. Including the three of us, there were eighteen people in our tiny house! Let's see... My parents, my nephew Matthew, and my Nanny came. My brother, Jason, and his wife Stacy came as well. Tammy (our roommate)and Ted, along with Corry and Gracie (their kids) were here. And Wendy (my sister) came with her husband, Chris, and they brought the Hayley, Emily and Olivia. We had hot dogs, baked beans and chips, and I made a birthday cake which we ate with Birthday Ice Cream! Jeremy got a ton of presents, but the big thing was: A WAGON! We all had a really great time. Right up until the point when Jeremy gave my brother a bloody nose by head-butting the bridge of his nose (See? I told you he was a little on the rough side!). Jason was over it pretty quickly, though, and the fun continued until about 10:00 last night.
I can't believe he's two years old already!
He's picking up new words every day, most of them relating directly to the television. I swear he doesn't watch that much of it, but for some reason that's just what he picks up. Today he started asking for "couscous" which to most of us means something to eat, but for Jeremy, that means blues clues. He can also sing the theme songs for Miffy and Maisy (well, he sings the names, and I fill in the rest). His current absolute favorite television show is 'Oobi' and anytime television is mentioned in any context whatsoever, he automatically walks to the t.v., points up to it and starts saying, "OOBI, OOBI, OOBI," over and over and over.
I've posted new pictures from his birthday party. Unfortunately, I FORGOT my camera when we went to Nana and Granbob's on Sunday, so I don't have any from that party. They took lots, though, so hopefully I will have some from there to post soon!
Holly, Josh and Jem

Thursday, February 23, 2006 7:21 AM CST

Jeremy seems to be feeling a little better. The vomiting has pretty much stopped, and the diarrhea is finally starting to slow down.
Jem had an appointment with Dr. Alvarado at AFLAC on Monday. They did some stool studies and some bloodwork. The stool studies came back positive for rotavirus (or rotovirus - I've seen it spelled both ways on the internet) which is really just a nasty little stomach bug. I have a feeling he picked it up last Tuesday when we were at the emergency room at ARMC. The most important thing to do at this time and to get him through it is to keep him well-hydrated, which, according to GI, requires about 1300 cc's of fluid per day. So, he's still on the pump pretty much all the time. He is tolerating small, slow boluses, though, so he is able to be free of the pole for short periods of time during the day. They also tested him for c-diff again, and that test (believe it or not) came back negative! When I called his GI people to let them know, she only said (in a hushed, quiet voice), "Do you think we actually killed it this time?"
Maybe we did. Or maybe the rotavirus (and it's resulting storm of diarrhea) actually pushed it on out. They took more stool yesterday at clinic (which I'm getting to), so we'll probably get those results today. Keep your fingers crossed for no c-diff!
His bloodwork from Monday had some slightly alarming results, however. His H&H were up (possibly from him being borderline dehydrated), his liver enzymes were elevated (possibly because of the rotavirus), and his IGG and IGA were both low.
IGG and IGA are antibody levels. They administer IVIG for low IGG, which is a three to four hour long infusion through the IV. So, we had to go to clinic yesterday for IVIG.
Not fun. We left our house around nine yesterday morning (my dad went with us) and did not get home until almost 8:30 last night. Our appointment was at eleven, and they didn't even attempt starting the IV until around 12:30. And since Jeremy is both a hard stick and currently fighting dehydration, it took five nurses and about an hour to get IV access on him. He was stuck so many times and cried so hard that he has little busted blood vessels all over his face. It was at this point that Dr. Alvarado informed us that it usually takes more than one treatment, and that Jeremy will need to have these levels drawn again in a month. If the IGG is still low at that time, we will start talking about placing another port, for permanent IV access. Hopefully that will not happen, but a port is better than what he had to go through yesterday.
So, we started the IVIG around two o'clock, and it lasted about three hours. Did I mention that because of the rotavirus we were quarantined to one clinic room for the duration of our visit? We had to actually talk them into letting us go down to the cafeteria for lunch.
The infusion was finally done around five or so in the afternoon, and we left the hospital around 5:30. In Atlanta. During rush hour. In the pouring rain.
Yuck.
We decided to stop somewhere for dinner (both to put off getting on the interstate, and because Jeremy had another dirty diaper), and so we didn't really start heading for home until 6:30. Traffic was still a nightmare, and so we didn't get home until after eight.
Now for the other abnormal result, the IgA. This is also an antibody, which works mainly in the gut and respiratory tracts (now, I wonder why he couldn't get rid of that c-diff?). A deficiency of this antibody is not as easily remedied as, say, the IgG problem. Dr. Alvarado is consulting with an immunologist, and when that happens, we'll go from there. I tried to do a little research about this myself on the internet, then read that possible treatments include (ahem) a bone marrow transplant, and, well, I just stopped reading. I'm sure that it won't come to that. I'll let the doctors do their jobs, and I'll just follow along.
Anyway, aside from a raging, bleeding diaper rash, Jem seems to be feeling better. I went into his room this morning (he isn't awake yet) to turn the feeding pump down, and I didn't smell anything stinky, so at least that's something. I also talked to BMT service yesterday at Aflac, and have mixed up some of their wonderful diaper cream (three parts Aquaphor to one part Maalox), and slathered that all over his bottom last night, along with some antibiotic ointment. Hopefully, if he got through the night with no diarrhea, his little backside will look a lot better when he finally wakes up this morning.
My parents are going to keep Jeremy for us this weekend (from Friday until Sunday!) so Josh and I will have the whole weekend to ourselves. We are very excited, and after the past two weeks, we could really use the break.
Josh cut Jem's hair, so I am going to post some of those pictures. Enjoy!
Holly, Josh and JEM

**********
Update (1:20 p.m.):
Jeremy is definitely feeling a lot better. His bottom looks ten times better, and NO dirty diapers since yesterday evening. He is also tolerating larger boluses of 24 cal/oz formula, and is much more playful and awake. Yay!

Saturday, February 18, 2006 8:42 PM CST

Just thought I'd write an update while I have a few minutes to do so.
Let's see... where to begin...
We spent Tuesday in the ER with Jeremy, because we thought there was blood in his g-tube. Thankfully, there wasn't, but it was still a long five hour visit. His bloodwork was okay, except for an elevated WBC count.
Josh left to go out of town on Wednesday with work, and Jeremy started throwing up Wednesday night. He threw up his evening bolus, then seemed fine until Thursday night, when he threw up his evening bolus again. So I ran a slow feed Thursday night, and that's when the diarrhea started. On Friday morning, he threw up his bolus before I'd even gotten all of it in, so I called the GI specialist in Atlanta.
They told me that Jeremy needed a g-tube study done right away, both because of the vomiting and the suspected blood from Tuesday. So, we spent most of the day on Friday at the Physicians Imaging Center in Athens so that Jeremy could have dye put through the tube under flouroscopy to check for placement and function.
So, after a lot of waiting, and a lot of mix-ups with the orders, he finally got the test around two in the afternoon on Friday, and thankfully it was fine. No problem with the placement or function - 90 percent of the dye went directly into his small intestine, which is exactly what it is supposed to do. I was very relieved about this, since I am the one who put this one in... having never done it before, or seeing it done before, had made me a nervous wreck. I was just certain that I had messed something up. Whew.
So, we're relatively certain that it's just some sort of stomach bug. They're certainly going around. And Jeremy is probably taking a little longer to kick it because of his chronic low-normal IGG.
Although he still has diarrhea, he's not vomiting as much anymore. We are not doing boluses at all at this point, and just have him on a slow, half-strength formula, around the clock feed. This is quite a challenge with an active two-year old! In addition to all the normal Jeremy stuff, I'm also chasing him around with an IV pole and doing all the extra laundry he's going through. And since we're all by ourselves this weekend, I'm trying to manage all of it alone. I'm just completely worn out!
He seemed to feel a lot better when he woke up from his nap this afternoon, and was very playful. He was running a temp last night, but that seems to be gone as well. So, I'm hoping he's on the mend and will be able to to tolerate small boluses tomorrow. Keep your fingers crossed for us!
Josh will be back tomorrow, too. So that should make it easier as well.
-Holly, Josh and JEM

Thursday, February 9, 2006 12:03 AM CST

Nothing new to report here.
Jeremy and I recently got back from Charleston. Originally we were just going to keep Heather and Zoie company while James was out of town. Then, about a week before he left, Heather threw her back out, so we were able to help out a lot as well.
We also got to be there for Zoie's fourth birthday party this past Saturday, and those two kids had a blast. They must've chased each other around the house for 45 minutes. In fact, Jeremy got so hot he started getting sick, so he spent the last 20 minutes or so running around shirtless. We all had a really good time.
Not much progress as far as eating, although Jeremy seems to be more adventurous lately than usual. He has eaten tangerines, strawberry newtons, green beans and Honeycomb this past week. What's really funny about Jeremy eating is this: he'll pick up whatever he's interested in, then hold it in front of his mouth and lick it for a good minute or so before actually sticking it into his mouth.
I'm afraid that when all is said and done, getting Jeremy to eat is going to be nothing more than a battle of wills. At this point, I cannot say for sure who will win.
Jeremy also still has c-dif, although this time they are just putting him on alinia, which is not an antibiotic. I'm still waiting to hear from his hem/onc team, to find out if they'd like to try something else. I should know something by tomorrow. I've also worked him up to 27 cal/oz formula, so at least he's tolerating that. Maybe if we can get to 30 per ounce, we can get off the night feeds. I'm not getting my hopes up, though.
Weight-wise, we're doing really well. He's up to about 27 pounds, and is approximately 33 inches tall. He's getting to be such a big boy. Yay!
I actually changed out his Mic-Key g-tube myself yesterday for this first time, with my dad helping me hold Jeremy down. It wasn't all that complicated or difficult to do, but it sure was messy. Yuck. It's been leaking a lot, so that's what GI told me to do. Hopefully it will correct the problem, and I won't have to do it again for another couple of months.
More later, and in the meantime, enjoy the new pictures!
Holly, Josh and Jem

Tuesday, January 24, 2006 8:49 PM CST

Nothing new going on here.
Jeremy still isn't eating a thing. Maybe half a piece of bacon in the morning, and a little strawberry by late afternoon. He just isn't interested.
He does have an appointment with the GI people on Friday, and we're trying to see if we can get him into the Marcus Institute for his feeding problem. From what I understand, it is a very intense, eight-week-long program that lasts all day, Monday thru Friday. He'll need a referral from his GI doc, and we'll probably need to stay in Atlanta with Nana and Granbob (during the week, anyway). It is going to take some time to get everything in order, though. So we've got some time to plan at least.
Other than that, he's still doing great. He's really starting to talk a lot now, and tries to mimic everything he hears. He really is a very intelligent little boy.
New pictures!
Holly

Tuesday, December 27, 2005 7:46 PM CST

I hope that everyone out there had a very merry Christmas!
We certainly did. Jeremy had a blast on Christmas morning, and seemed to love everything left by Santa. His favorite present was a little foam sofa that has Winnie the Pooh on it (we are VERY into anything Pooh right now). In fact, once he found the sofa in his little pile, he wouldn't get off of it. We had to bring everything else to him after that!
You all know that Jeremy only narrowly escaped spending Christmas in the hospital. I, however, was not as fortunate. I fractured my ankle around midnight on Christmas night, and was in the ER until around three in the morning. It's a small fracture, but of course I have to stay off of it until I go to the Orthopedist. I have an appointment tomorrow at ten.
On top of this, Jeremy is at Egleston right now. He is spending the night in the hospital tonight, because when I clamped his g-tube today, the clamp cut a hole in the tube. So Josh and Tammy took him to Egleston, while I stayed at home because of my ankle. I thought when they left that all they would need to do is a simple repair, but I was wrong. Instead, they admitted him to keep him hydrated with IV fluids (because the tube is leaking uncontrollably) and he will be worked into the surgery schedule tomorrow in order to have the whole thing replaced. Again. Hopefully everything will go smoothly and my boys will be home sometime tomorrow afternoon.
I will update again to let you all know how it went.
I also put some new pictures up from Christmas morning. Enjoy!
Holly

****Update 12/28/05****
Jeremy's surgery went well today. Since the genie is on back order from the manufacturer, they had to put in a mickey instead. I am not really happy about this, since the mickey is much easier for Jeremy to just pull out than the genie. But when there aren't any other options, what can you do? So, Josh is waiting on them to give him the full run-down on how to use the mickey, and then they'll be on the way home.
I went to the orthopedist this morning, and while I do have three chip fractures in my ankle, it is not really a big deal. I need to wear a brace for six weeks and can start putting weight on it whenever I feel comfortable with doing so. I'll need to go back in a month and a half for follow-up x-rays, just to make sure everything healed properly.
Thanks for checking in on us!
Holly

Saturday, December 24, 2005 6:37 AM CST

We will be spending Christmas here at home!
They decided to do the Vancomycin with an oral solution at home. Since this was one of Jeremy's meds during transplant, we felt that he wouldn't have any reaction to it. He'll need it every six hours for ten days. It's been a long time since I had to set my alarm clock to administer a med, but I'm sure I'll be back in the swing of things in no time. It's just no fair that I have to get up at six to give Jeremy his antibiotic, and he doesn't even wake up until around eight! Oh, well. Only for ten days, right?
He's also back on the culturelle, which they want to keep him on indefinitely. This is actually a little capsule full of good bacteria, which will "encourage the growth of beneficial gut flora." That's a direct quote, folks. Gross, huh?
Anyway, Merry Christmas to all, and thanks for checking in on us so regularly this past year.
Holly, Josh and Jem

Wednesday, December 21, 2005 12:59 AM CST

Well, after being on an antibiotic and a probiotic for a month, Jeremy still has c-diff.
Since he's been on Flagyl three times now in as many months, our options for treatment at this point are pretty limited. It's obvious that this bacteria has some sort of resistance to Flagyl, because that drug has yet to clear it up. Our next course of action is Vancomycin, which has to be administered IV in a hospital.
So, unfortunately, it is likely that our family will be spending the Christmas holidays at Athens Regional Medical Center, so that Jeremy can get this IV antibiotic.
This is not a sure thing YET, because I haven't talked to his pediatrician about it. We'll need her to agree to admit him under her care at ARMC, and work as a team with his GI docs at Emory in treating the c-diff.
Hopefully this will work out, so that we can at least be closer to home... either way it will be hard, but the commute sure would be easier on us if Jem was in Athens.
At this point, I don't really care if we have to spend Christmas, New Year's and Easter in the hospital - I just want the c-diff to be gone.
I will post more later, when all the details are worked out.
Holly

Tuesday, December 6, 2005 12:55 AM CST

Just a short update today.
Jeremy is doing well, and the leak seems to have stopped. I started anchoring the tube through the tab on his diaper instead of pinning it to his clothing, and that has helped tremendously. Also, I am mixing it at a higher calorie concentration, therefore reducing the rate at which I have to run it. So far, no leaking since Friday. Hopefully this will fix the problem. I read recently that a lot of people have these issues with g-tubes, so I don't feel so bad. I guess it's just par for the course.
Jeremy has an appointment in the morning with his primary pediatrician for the flu vaccine. He'll need another one in six weeks, then we'll begin having his regular immunizations. I am a little nervous about this, since we're pretty sure that it was his eight-week shots that "triggered" the HLH process when he became ill initially, but I do understand that he needs them in order to have a normal life. So, I have agreed to go ahead with them, on the condition that he has one every six weeks, instead of those awful cocktails that most kids get. I just think that we still need to be easy on his little immune system. I hate that he'll have one shot every six weeks, but I'm sure he'll be okay.
Anyway, new pictures up today! Happy Holidays!
Holly, Josh and Jem

Monday, November 28, 2005 2:56 PM CST

NEW PHOTOS!!!
I know that this update is way overdue.
Not much has been going on lately. Jeremy is still on the night feeds, and gaining weight regularly (in fact, he's starting to get a little bit chunky, I think). However, still not much progress as far as the height is concerned, but we hope to see a change at his next GI appointment, which is on December 30.
He is kind of back-and-forth with his eating. His absolute favorite food is bacon. He will eat that whenever I give it to him, so I just go ahead and fry a whole pound at the time, then crumble it up as needed. He also really likes grape tomatoes (I know, weird, right?), so we keep those on hand as well.
Jeremy actually got to spend a week between grandparents while Josh and I went on our first vacation since he was born. We spent November 12-19 in Hilton Head, and Jeremy spent the first six days with Nana and Granbob, then Thursday through Saturday with Papa and Grandmama. It was so much fun to get away for awhile, but we were awfully glad to get back to our little Jem. In fact, it was Nana and Granbob who discovered Jeremy's love of bacon. Thanks to all four grandparents for helping us get away; we needed it so badly! We love you all.
Anyway, Jeremy is having surgery on Wednesday to have his g-tube replaced. The leak is not very bad. It's very slow, and doesn't happen every night. But when it does leak, it wakes Jem up at around 5:30 or 6:00 in the morning because his clothes are damp, and then both of us are cranky the rest of the day. Also, I've been seeing an increased amount of blood in the tube lately, which has me worrying, of course. So, even though I don't want him to undergo surgery again, I think he will be more comfortable if he gets a new tube. At least they'll put it in the same place, so he won't have yet ANOTHER scar on his torso. I'm not sure what time the surgery is scheduled for (probably 6 a.m.), but they're supposed to call me and let me know what time to have him there. I'll add that information to this post as soon as I have it, so that all of you can keep him in your thoughts during the surgery.
I hope everyone out there had a wonderful Thanksgiving - we were certainly counting our blessings around here, especially considering where we were this time last year. It really wasn't that long ago that none of us even knew if Jeremy would be here for his first Christmas; much less his second! It seemed too much to hope for then, but here we are, watching him grow and learn and do things that are nothing short of miraculous. Our miracle baby has become a miracle toddler, and we are thankful for it every single day.
Happy Holidays to all of you,
Holly, Josh and Jem
****************
Jeremy is scheduled for surgery today at 10:15. I am under the impression that it's a pretty simple surgery, so hopefully everything will go without a hitch, and we'll be home again by three or so this afternoon. Keep him in your prayers!
*******
Just a short update to let everyone know that Jeremy's procedure went fine yesterday. No problems with anesthesia, and they said everything looked great. However, Jeremy's tube leaked again last night, so I'm waiting to hear from GI to see what the next step is. I'll run another feed tonight, and try a different way of anchoring the tubing to his sleeper. Hopefully it will help with the leaking.

Tuesday, October 4, 2005 11:23 AM CDT

Jeremy is walking everywhere. Yesterday, he walked all the way from our living room, down the hallway and into our bedroom. He didn't stop until he reached the bathroom, then sat down very deliberately in the middle of the bathroom floor.
Jeremy is so funny when he walks, too. He is just so pleased with himself every time he does it. He either screams or pants excitedly (with his tongue sticking out) each time he manages to stay on his feet for any substantial amount of time. He'll just grab Grover by the arm (incredibly cute) and take off, arms outstretched, screaming/panting the whole way. He becomes more entertaining every day. :)
He's really trying to communicate with us, too. Sunday, we went over to my brother's house for lunch, then went to the pond behind their house. Jason brought his fishing pole, and proceeded to catch several catfish right in a row. My Dad would hold them up for Jeremy to see (and touch - yuck), then we'd get him down by the edge of the pond to let them go. Jeremy just thought it was the coolest thing EVER. After the first fish was released, Jeremy put his hand on my Dad's shoulder, then pointed towards the lake with his other hand, babbling the whole time. It was like he was saying, "Hey, Pa. Do you remember that fish you just let go? It swam way out there, didn't it?" But it sounded like "Babble babble babble (nod, nod, nod) babble babble babble." It was completely adorable.
Jeremy is doing really well with the night feeds, although he did make quite a mess yesterday morning. Somehow, he had managed to wake up (without making a peep), pull the pole towards the crib, get the Kangaroo bag off of it, and then dump the contents of said bag all over his bed. But thank goodness the night feeds were still an option for us, because his weight is really going UP UP UP. Yesterday, he weighed a whopping 24.6 pounds. That means that he's gained pretty close to five pounds in ONE MONTH. So maybe it won't take as long for him to catch up as I originally thought, and we'll be rid of the tube by the end of the year. Let's hope that his daytime eating stays stable, so that he can maintain the weight without the night feeds.
Our camera hasn't been working very well lately, so I will take some more pictures for posting as soon as we either fix it or get a new one. Jeremy also has an appointment on the 28th of this month, for a follow-up with GI. We will see then where this weight gain has put him as far as the growth chart is concerned, plus they will retest him for c-diff to make sure it's gone. If I don't post again before then, I certainly will afterwards.
Until then,
Holly, Josh and Jem


New Walking Photos!

Wednesday, September 28, 2005 11:56 AM CDT

A few new things to report:
The GI people called on Friday, to let me know that Jeremy is having another bout with c-diff. This is a condition that I think is very common in people with compromised immunity or who are on long-term antibiotics. Also, it is very hard to get rid of once you've had it. Jeremy was hospitalized for this back in March, but to be honest, I didn't have any idea that he had it this time. Last time, it made him EXTREMELY ill. But this time, only some minor diarrhea. To me, that says great things about the current state of his little immune system.
It also explains some of his low counts when we went to our appointment on September 2nd. His WBC count and his platelet count were both low that day, as well as his IgG. All of which was probably a result of his illness.
Which brings me to this past Monday's appointment. They did a CBC when we came in, and both the WBC and Platelet counts had improved drastically. His WBC count had gone up to over 9 (from 4) and his platelet count was up to 347, from 141. So, they decided NOT to do the IVIG, and to redraw that level. We were instructed to give him an extra week of the antibiotic (for the c-diff) which means he'll be on it for three weeks, three times a day. After he's been off of it for a week, we'll have to go back to Aflac to have another stool test done, just to make sure that the c-diff is gone. And since his IgG level came back in normal range, we will not have to do the IVIG at all. Hooray!
The physical therapist came this morning, and assured me that Jeremy will be running within the next week. I think I'm ready, but I'm not sure. :) I will try to snap some pictures of our walking boy soon, and post them.
Until then.
Holly

P.S. New Photos!!!

Thursday, September 22, 2005 7:09 PM CDT

Jeremy is going to need the IVIG. His IgG was still very low, so we're going to Aflac on Monday for the four hour IV infusion of antibodies.
Yay.
On a more positive note, Jeremy started WALKING today. He still mostly scoots on his bottom (he never really crawled), but he took a good nine or ten steps on his own today, from the loveseat to the sofa. He's done it several more times as well, but I don't think he's confident enough to start doing it all the time.
Additionally, he is saying several words and some phrases now. He says 'utta doin' (whatcha doing), 'pobem' (problem), 'ta, ta; I done, I done' (stop and I'm done). He is also saying small, simple words with a great deal of clarity (such as ball, duck, daddy, mama, and no).
We are just thrilled that he is finally achieving these milestones. Better late than never, right?
Also, the results of the chimerism (FISH) test came back, and he is.... 99% donor cells at one year post transplant! Go, cells! The nurse at the clinic seemed thrilled with the result (she kept saying, "Excellent. These results are excellent!!), and assured me that Jeremy is holding onto his graft, despite the 1% of his own cells that were found in the sample. Even though the tests that were performed at Day +30 and Day +100 both came back as 100% donor, this recent result doesn't mean he's "slipping" or anything like that. So, another huge sigh of relief.
Thank you all for continuing to check in on us. I was planning on closing the site down, but thought I'd wait because of the results of the IgG test, as well as the fact that we weren't able to get rid of the g tube yet. So we'll still be here, and I'll still update whenever I can. Which will probably be even less often, now that Jeremy's becoming a full-fledged toddler. I'm hoping he'll keep me hopping!
More later.
Holly

Wednesday, September 7, 2005 1:16 PM CDT

I know this post-appointment update is way overdue.
Jeremy seems to be feeling much better now than he was last week. He's not running a fever anymore, the rash is gone and his appetite has picked back up a little. He is much more energetic as well.
As for our Friday appointments:
The Aflac BMT appointment went fairly well. His WBC count and his platelet count were a little on the low side, which they thought was probably because of whatever virus he was fighting off. They did the FISH test, but we won't know the results of that for a few weeks yet. His EKG was fine. They told us to be back in a year.
His GI appointment, however, did not go nearly as well. He was seen by three different GI docs, as well as a nutritionist. Jeremy is still extremely underweight. He is in the fifth percentile for his age, which is pretty much considered "failure to thrive." Although it is obvious that he is not malnourished at all, they are concerned about the long-term effects of his lack of growth. Therefore, we will not be able to get the g-tube out any time soon (their ballpark estimate was 36 months). Additionally, we are back on night feeds - 500 cc's a night. Which will, naturally, have a negative impact on his eating during the day. They are worried that Jeremy's growth may be permanently stunted, so it's important that we take advantage of his body's ability to GROW right now. We will do this (and he will hopefully gain height as well as extra fat) by pumping about 500 extra calories into him every night.
Needless to say, I am very disappointed about this. I was really hoping to have that thing taken out. This week, preferably. But it looks as though we're stuck with it for at least another year. They are going to keep track of his height and weight on the growth chart, and when he is in the 25th percentile, then we'll talk about having it removed. Until then, we'll do night feeds. Hopefully it won't take TOO long, but you have to remember: they want him in the 25th percentile for his AGE GROUP. So the parameters will keep going up as he gets older. Which means he'll be playing a constant game of "catch up" until whenever. So who knows? Maybe it'll be out by his second birthday. Maybe he'll still have it in kindergarten. We'll just have to wait and see what happens.
We finally left Egleston around 5:00 in the afternoon.
On a Friday.
Going from Atlanta to Winder.
On I-85.
North.
And then I rear-ended someone about five minutes after I got onto the interstate.
Since I was only going about 5 mph, it wasn't that big of a deal. But we didn't get home until around seven that night.
The next morning, I listened to the messages on our voicemail. Liz called from clinic, to tell me that another one of Jeremy's lab results was abnormal. His IgG was low, so they wanted him to come in this week for IVIG, which he has not needed since November. IVIG is an infusion of antibodies, which takes about four hours to administer through IV.
Since the thought of putting an 18 month old without a central line through a four hour IV treatment is almost unbearable for me (they will have to put the IV in his foot and he will not be able to walk, stand or scoot for four hours - he will be impossible to deal with the entire time), I asked his pediatrician to draw this level again. We went this morning to ARMC to have it redone, and I am hoping his level will be higher than it was last week when he wasn't feeling well. I should know about the results either tomorrow or Friday. Until then, keep your fingers crossed that they will AT LEAST be low-normal.
Also, his g-tube has started leaking around the site. Since it's not too bad right now, they've told me to watch it. But it can be caused by either a growth spurt (probably not the case with our little Jem) or a slight displacement of the disc which anchors the tube in his stomach. The latter has to be remedied with surgery, so let's hope this leaking is just a fluke.
Anyway, that's all the update for now. I will let everyone know what the results of the impending tests are when I get them back. Until then,
Love,
Holly, Josh and JEM

Thursday, September 1, 2005 9:51 PM CDT

Just a quick note on the anniversary of Jeremy's stem cell transplant.
I can't believe we've finally made it to this point. It is a huge relief, because during the first year following transplant there is a 25% chance of HLH coming back. However, if you do make it to day +365, the chance of it coming back drops to less than 5%. Everyone around here was able to finally breathe a huge sigh of relief this morning, for the first time in over a year. We are so happy we're finally approaching the other side of this bridge.
On a more worrisome note, however: Jeremy has been ill since Monday. He started with diarrhea on Monday, then started running a temperature on Wednesday night (symptoms that make me almost crazy with fear, because those were the first signs that sent us to the hospital last June, when he was diagnosed). So far, his temp hasn't gotten over 100.5, and I have called his pediatrician. We are hopeful that it is nothing more than either teething or a little stomach bug, and although I know that it's most LIKELY something minor, I can't help but shudder just a little. The fever has not really gotten any better (even with Tylenol) but hasn't gotten worse, either. Hopefully they will be able to figure out what's going on with him when we go for our appointment tomorrow at the Bone Marrow Transplant Clinic. Keep your fingers crossed for GREAT counts, and for the chimerism test to come back (for the third time) as 100% donor cells.
I will let you all know how it goes when I get home tomorrow.
Holly

Monday, August 29, 2005 2:55 PM CDT

Okay, I know that I said I would post more pictures with that last entry, but Jeremy woke up and you know how that goes...
Here are the pictures!
We are going to Egleston on Friday for our 1-year BMT follow-up. I will let you all know how it goes when we get all of the test results back.
Holly

Tuesday, August 23, 2005 1:06 PM CDT

No news to report, yet...
Just wanted to put some new pics up!
Love,
Holly

Wednesday, August 3, 2005 1:43 PM CDT

Nothing new to report here.
Jeremy's eating continues to improve, and he is now eating solids regularly. He loves Ritz crackers, and any kind of bread, really. Yesterday he had his very first PB&J sandwich, with a banana. He'll really eat anything, as long as he can feed it to himself. I still manage to sneak in bites of beef stew, or chicken soup between little nibbles of bread, though.
In fact, on Monday, his occupational therapist came when he was in the middle of breakfast. He was having soy yogurt and cinnamon toast. After seeing him do that, she felt really good about not coming out anymore. So we will not see her again.
Jeremy is also pulling up on EVERYTHING. He also creeps along the edges of the sofa, loveseat and playpen. His current favorite game is to pull up on (whatever), then throw his hands up and fall backwards as hard as he can. Most of the time, I am sitting behind him, so he has a soft place to fall. There are times when he does it without anyone to catch him, though, but he just laughs it off. He knows no fear.
We have our one year follow-up bone marrow transplant appointment on Friday, September 2nd. I am not sure what kinds of tests they will do yet, but am assuming that it's just bloodwork. They will probably do another chimerism test, to make sure he's still 100onor cells. They will do other blood tests as well, but I don't think he'll have anything more invasive than that. I've been told by Dr. McClain and Dr. Filipovich that they only do bone marrow aspirations or lumbar punctures when the child isn't doing well. So I'm hoping it will be a fairly easy day for him.
He also has an appointment that day with GI, to schedule the removal of the g-tube. Jeremy is probably not taking in all of his required calories per day, but I don't think toddlers do that anyway. I haven't done a night feed in over a week, and his weight is stable. I give him his meds in the morning by mouth, and his evening meds through the tube (but only because it needs to be flushed once a day, anyway). So I feel positive that they will agree that it can be taken out.
In light of all of this, I will be closing down this Caringbridge site when we get done with those appointments, get the test results back, and have the tube removed. I honestly feel that Jeremy is cured, and that if I keep the site up, I would only be using it to report "normal" activities, which can be done on our Typepad site. I would like to sincerely thank everyone who has ever stopped by to check on our baby, for without all of you and your prayers, we might not be at the point we are now. Please feel free to still check on us through our Typepad site - there's a link for it at the bottom of this page.
I am posting more pictures today, but probably will not update again until after our appointments in September.
Until then!
Love,
Holly, Josh and JEMBUG

Thursday, July 21, 2005 10:54 AM CDT

Things are pretty uneventful around here.
Thank goodness.
Jeremy's eating is continuously improving. He can now tolerate chunks without gagging every single time, and actually has some foods he really likes. Spaghetti is one, and the other is soy yogurt. He still is pretty indifferent about the bottle, and we are still doing night-feeds regularly. I am keeping track of his weight here at home, and it seems to be staying about the same. So, I brought the night feeds back to every other night. Hopefully we will see some extra ounces come on soon.
We spent last week in Charleston with our friends Heather and James, and their daughter, Zoie (Josh was in California for work). They have a dog and two cats, and it was a lot of fun to see Jeremy interact with animals for the first time in his whole life. He loved it! He also showed no sign of having any allergies to them, except for sneezing a little on the day we got there. He was fine the rest of the time. He was mesmerized by Zoie, and would watch her intently whenever she was around. She's a little over three years old, and is just the sweetest little girl. She just kept bringing toys over to Jeremy, and would look up to me and say, "I share my toy with baby Jeremy" then go back for another and say it again. It was so cute.
I think it was good for him in that he got to see another kid doing stuff as well. He is trying much harder to pull himself up these days, and also enjoys walking while he holds your hands (you can tell by the delighted screams you hear the entire time you walk with him). If I am lying on the floor with him, he goes over me with no problem. He is also mobile. He still hasn't crawled, but he can scoot around on his bottom and get wherever he needs to go. So we'll be buying baby gates really soon (like, tonight).
Well, that's all for now. More later!
Love,
Holly, Josh and Jeremy

P.S. NEW PHOTOS!!!

Saturday, July 9, 2005 8:17 PM CDT

Posted on the Histiocyte Association HLH discussion lounge:

Expectant mothers waiting for a newborn's arrival say they don't care what sex the baby is. They just want it to have ten fingers and ten toes.

Mothers lie.

Every mother wants so much more. She wants a perfectly healthy baby with a round head, rosebud lips, button nose, beautiful eyes and satin skin. She wants a baby so gorgeous that people will pity the Gerber baby for being flat-out ugly.

She wants a baby that will roll over, sit up and take those first steps right on schedule (according to the baby development chart on page 57, column two).

Every mother wants a baby that can see, hear, run, jump and fire neurons by the billions. She wants a kid that can smack the ball out of the park and do toe points that are the envy of the entire ballet class.

Call it greed if you want, but a mother wants what a mother wants.

Some mothers get babies with something more.

Maybe you're one who got a baby with a condition you couldn't pronounce, a spine that didn't fuse, a missing chromosome or a palette that didn't close. The doctor's words took your breath away. It was just like the time at recess in the fourth grade when you didn't see the kick ball coming and it knocked the wind right out of you.

Some of you left the hospital with a healthy bundle, then, months, even years later, took him in for a routine visit, or scheduled her for a well check, and crashed head first into a brick wall as you bore the brunt of devastating news.

It didn't seem possible. That didn't run in your family. Could this really be happening in your lifetime?

I watch the Olympics for the sheer thrill of seeing finely sculpted bodies. It's not a lust thing; it's a wondrous thing. They appear as specimens without flaw - muscles, strength and coordination all working in perfect harmony.

Then an athlete walks over to a tote bag, rustles through the contents and pulls out an inhaler.

There's no such thing as a perfect body. Everybody will bear something at some time or another. Maybe the affliction will be apparent to curious eyes, or maybe it will be unseen, quietly treated with trips to the doctor, therapy or surgery. Mothers of children with disabilities live the limitations with them.

Frankly, I don't know how you do it. Sometimes you mothers scare me.

How you lift that kid in and out of the wheelchair twenty times a day or deal with tantrums and screaming 18 hours/day?. How you monitor tests, track medications, and serve as the gatekeeper to a hundred specialists yammering in your ear.

I wonder how you endure the clichés and the platitudes, the well-intentioned souls explaining how God is at work when you've occasionally questioned if God is on strike.

I even wonder how you endure schmaltzy columns like this one -- saluting you, painting you as hero and saint, when you know you're ordinary. You snap, you bark, you bite. You didn't volunteer for this, you didn't jump up and down in the motherhood line yelling, "Choose me, God. Choose me! I've got what it takes."

You're a woman who doesn't have time to step back and put things in perspective, so let me do it for you. From where I sit, you're way ahead of the pack. You've developed the strength of a draft horse while holding onto the delicacy of a daffodil. You have a heart that melts like chocolate in a glove box in July, counter-balanced against the stubbornness of an Ozark mule.

You are the mother, advocate and protector of a child with a disability. You're a daughter, neighbor, a friend, and you're a wonder.




***New photos.

Wednesday, June 29, 2005 12:52 AM CDT

Jeremy seems to be feeling much better today.
He has not thrown up since yesterday, although he is still having quite a few messy diapers. He is also taking the bottle again, and had cereal for breakfast and vegetable bacon baby food for lunch.
He is regularly finishing a whole jar of baby food at every meal, now. I've also started putting formula (with just a little bit of vanilla Nestle Quik added) in a cup for him to go with his food. He has not been interested in drinking anything with his meals, and if I'm ever going to get him off the bottle, he really needs to start doing that. I would like to give him milk, but he can't have it. He seems to like it better, and plus it adds calories to his total daily intake. I have heard of other people doing this to encourage their children to eat, and to give them a little calorie boost. So I don't think it is really going to hurt anything.
Jeremy has also impressed his parents, his occupational therapist and his speech therapist this week by putting the pieces of a puzzle where they belong repeatedly for three days in a row. When Josh first told me that he was doing that, I of course thought it was a fluke. Then, he did it three more times. He also did it in front of his OT and PT, and they both said that it was outstanding. His occupational therapist said that children usually do not start doing that until around age 2, and Lee, his physical therapist, said that it was obvious that he was doing it ON PURPOSE, and not by accident. For example: the puzzle is in front of him, with the circle on the right and the triangle on the left. Jeremy, however, has the circle piece in his left hand and the triangle piece in his right hand. He will actually switch hands, and move the piece around on the board until it slips in the hole. Because I've been particularly worried about his mental development (because of the chemo that was injected directly into his spinal column), this skill he's developed has made me breathe a little easier for sure.
More later!
Love,
Holly

Tuesday, June 28, 2005 11:51 AM CDT

Just a short update today.
Jeremy is not feeling well today. He has hardly eaten any formula all day (maybe three ounces) and wants nothing to do with solids at all. He's being really clingy, and has done nothing all day long but cry. He finally went down for a nap around 11:00, but woke up vomiting thirty minutes later. He went right back to sleep, and is sleeping restfully now. He's also had a couple of messy diapers this morning.
Since he's not running a temp, I am assuming that it's just some sort of little stomach bug. So for now, I am not going to try to force the bottle on him or try to get him to eat solids if he doesn't want them. I know from experience that it's best to let his little tummy rest during times like this. I am planning on getting the Kangaroo pump out (even though I hate to) and giving him a slow Pedialyte feed when he gets up. He's not dehydrated now (there are still tears, and his mouth is still wet) so at least there's that. But I don't want him to get dehydrated, either, and that can happen pretty quickly with him.
Even though this is probably not a big deal, it's still pretty scary stuff around here, so keep your fingers crossed that he shakes it with no problem.
Holly

Tuesday, June 21, 2005 12:02 AM CDT

Jeremy is still doing really well with eating.
He really likes scrambled eggs. Yesterday, he even had grits. He totally loves the chicken from Zaxby's if you pinch off a little and mash it with your fingers, and if you make a mashed potato for him, he'll love you forever. I even put some barbequed chicken in the blender one night, and he ate almost all of it.
The occupational therapist told me to give Jeremy strong tastes, such as BBQ sauce, because it will "activate" his taste buds. Strong flavors may also stimulate speech development, according to her.
He's just not that crazy about baby food. I think that I will get some of those Gerber Graduates the next time I'm at the grocery store. They're like little microwavable meals for toddlers, and should be easy to mash up with a fork. Perhaps he will like those better. I am still trying to stay away from the stage 3 baby foods, because I've been told by three different speech therapists that I should not give them to him.
The bottle is going really well, also. He averages about 25-30 ounces per day, so I don't even do boluses or night feeds anymore.
And this morning, something else amazing happened: Jeremy took all of his meds BY MOUTH. No choking, gagging or crying. He wasn't crazy about it or anything (esp. the Prevacid - he didn't mind the Bactrim or the Reglan) but he didn't throw them back up, and he really didn't protest too much about them, either.
So, in light of all of these things, I put in a call to the GI specialist this morning, so that we can set up a date for the g-tube to be removed. I simply do not think that he needs it anymore. If he can tolerate his meds, and is eating as much as he is, then I think he is ready to be rid of the tube. I know that he may have some bad days, but all kids do, I think. Also, as I told my mother, if he has TOO many bad days in a row, we can always put an NG tube in for one night to do a night feed if we need to. So, I will update again when I hear from the GI people.
More then.
Holly
------------------------------------------

Just a note:
I realized something about an hour ago when I was talking to Josh about what Jeremy's eaten over the past two days:
Yesterday was the first day in over a year that I have not had to do anything "abnormal" - there was no tube to be flushed, no syringe to be washed. Sure, we had to give him medicine, but lots of kids take medicine, right? The closest I got to anything medical all day long was washing around his tube when I gave him a bath last night. But I would've washed that spot, anyway.
-Holly

Saturday, June 18, 2005 3:15 PM CDT

Well, disappointing news, everyone.
Jeremy has not eaten solids since Wednesday.
I don't know why he's suddenly had a change of heart (or appetite, or whatever) but we're back to pitching a fit every time you even TRY to put him in the high chair. He knows that if he swings his head back and forth hard enough, not only will I miss with the spoon every single time, but I eventually get so frustrated that I just give up. He is uninterested in the blocks, or any other toy I offer while I'm trying to feed him (I think he knows this is just Mommy's way of distracting him, and he won't have any of it).
I am trying to be consistent, and I still offer solids to him three times a day. I really don't think it does any good to get him upset, though. So I don't press the issue as much as I probably should. I think that maybe it will be this way for awhile, until Jeremy really gets used to it.
The good news, however, is that he is still interested in his bottle. He's already had about 22 ounces today, and will probably have at least another eight or nine ounces before bedtime. So, at least there's that, right?
Nothing else to report, really. So I will just post these new pictures and check back in sometime later this week.
Holly

Tuesday, June 14, 2005 10:39 AM CDT

Just another eating update.
I know everyone is probably tired of reading all about exactly what Jeremy's eating, but I swear, I can't help myself.
It's so completely unbelievable to me that I sometimes feel as if I'm lying when I tell it. And I'm there the whole time!
So far today, Jeremy has eaten:
Breakfast: Rice Cereal with Peaches
Snack: One four-ounce bottle
Lunch: Rice Cereal mixed with peas, peaches for dessert
Snack before nap: Another four-ounce bottle
And when I say that's what he's eaten, I mean that I was scraping the bottom of the bowl with the spoon, and he still wanted MORE.
This is funny, because now I'm worried that he'll gain TOO much weight, and will take even longer to start walking.
His pediatrician did tell me that he should be on a "breakfast, snack, lunch, snack, dinner, bedtime bottle" schedule right now, so I don't think I'm overfeeding him. I hope I'm not, anyway.
In other news, my mother fractured her leg in two places, and has been bedridden for just over a week now. She has handled it all beautifully, but cannot get the hang of those crutches (which I know from personal experience are VERY hard to get used to). This morning, she was trying to get to the kitchen, and toppled over backwards, injuring herself in a couple more places (nothing too serious, though). Josh and I tried all morning to convince her to come and stay with us through the weekend, because I'm here all the time, but she won't have any of it. I know some of you have been missing her regular emails about Jeremy, but hopefully she will be up and around again relatively soon.
Love,
Holly

Sunday, June 12, 2005 10:15 PM CDT

Jeremy started solids yesterday.
I mean, REALLY started solids.
He had cereal with pears for breakfast, and chicken noodle dinner with peach cobbler Stage 2 baby foods for dinner.
He had about 1/8 cup total of the cereal, and half a jar each of the baby food.
He did the same thing today.
He is also still taking between 15-20 ounces of formula per day. I know this is less than it was, but he's really starting to get the hang of eating baby food now, so I'm not really worried about it. Plus, we have brought back the night feeds, even though we only run it for four or five hours per night. We just run 30 calorie per ounce formula through it at about an ounce and a half per hour to try to compensate for the calories he's not getting during the day, as we are not doing bolus feeds (even with the syringe) at all any more in the daytime.
So, I feel as though we are really making progess with this last hurdle. For instance, Jeremy took about 30 minutes to eat all of that baby food on Saturday night, but finished it all in about fifteen minutes tonight. That's progress, right?
Don't get me wrong, though. Jeremy is still pretty unhappy about eating in general, and it takes a lot to convince him that what he's feeling is hunger and that it can be fixed simply by opening his mouth and eating. There is some crying involved (from both of us) at most mealtimes. However, I've now discovered a new strategy: If I give Jeremy two blocks to play with while he eats, it's much easier on both of us. It gives him something good to focus on while he experiences eating. It also distracts him, so you've already gotten a good bit in him before he realizes what's hit him, and won't eat any more.
I really hope this means we can be rid of the g-tube soon. Even though it makes giving him his meds so much easier. On Friday, I decided to try to give Jeremy his medication by mouth, just to see if he could tolerate it at all. Unfortunately, I started with the Prevacid (for reflux; also to protect him from any irritation caused by the tube in his stomach) which made him gag and start vomiting the minute it touched his lips. Naturally, the rest of his meds went directly into his g-tube. So maybe it would be best to keep the tube until at least September, when he will probably be off ALL of his medications, even if his feeding keeps improving. I suppose that's for the doctors to decide, though.
Well, more later.
Holly

Thursday, June 9, 2005 9:07 AM CDT

I finally have some good news to report on the feeding front.
It all started on Saturday night, when Jeremy took over three ounces from the bottle when he went down for the night. It made wonder if there was really anything to this whole "oral aversion" thing that everyone keeps talking about. I mean, if Jeremy has an oral aversion, why does he take the bottle on occasion, and why does everything else he gets his hands on (except food) seem to go directly to his mouth? So even though he only took that little bit on Saturday night, I decided NOT to do a night feed that night - just to see what would happen.
Well, Jeremy slept all night on Saturday night, and when he woke up on Sunday morning, initially he only wanted about an ounce and a half. So instead of bolusing him, I decided to wait it out. I moved the feeding pump into the garage, so that it would be out of his sight. I had honestly started to believe that Jeremy's lack of eating was nothing more than laziness on his part. I mean, if you could just sit by and watch TV while your stomach magically filled up, you'd do it, too. So I thought it would be worthwhile to see what would happen if we took that option away from Jeremy. He had actually gotten to the point where he would start to get excited every time he saw the feeding pump being rolled towards him - the same way that most babies get when they see a bottle when they're hungry. Tiny infants are able to make the connection between their hunger and their food source, so Jeremy is certainly able to do that as well.
An hour later, Jeremy took over five ounces from the bottle.
Since Sunday, I have not taken the feeding pump out even one single time. Even though Jeremy is still not taking EVERYTHING he needs by mouth (we average around 20-25 ounces per day), he is showing huge improvement (he was only taking about three ounces TOTAL per day). I do bolus him to make up for what he doesn't take, but I do it with a big syringe instead of the pump, and I never let him see me do it. I sit him in his toddler seat, and turn the TV on. While he is concentrating on that, I draw his formula into the syringe, put it on a plate, and sneak up behind him to bolus him, while I talk to him and distract him with whatever is on the television.
Jeremy has actually started to show excitement about the bottle as well. This morning, after I got him up and changed, I went into the kitchen to make his bottle. I sat him in his high chair, and as soon as he saw me take the bottle out of the cupboard, he started getting REALLY anxious. Then he got downright MAD until I had it ready. I picked him up, and had the bottle in my other hand, and he actually reached out as if he was trying to take it from me. I sat on the couch, and he started opening his mouth for the bottle. He proceeded to take about four ounces from the bottle, which is our largest "first thing in the morning" meal yet.
For now, I am letting him eat whenever he's ready - if he wants the bottle, I give it to him. Even if he just ate; even if he only takes an ounce. I have decided that I will do this for another couple of days. When Jeremy has really figured out that it is the bottle that makes him full, I will start trying to put him on a schedule again. Which means I will let him have the bottle in the morning, but if he only takes two ounces, that is all he'll get until noon. This may seem cruel, but that is what worked when Jeremy was tiny and would only snack. I let him eat, then withheld it for four hours. By the end of that four hours, he was starving, and took over six ounces. Hopefully that will work again.
Although I have been offering solids sporadically (he loves mashed potatoes made with formula), I am really trying to hold off on really forcing the issue until he gets used to the bottle again. I think it's best that we start from square one with him for now, although hopefully we will progress pretty quickly once he starts eating in earnest. We will see what happens.
If you're one of his nurses or doctors: Sorry I didn't ask for permission before starting this with him; I just felt it was the right thing to do at the time. Hopefully it will not backfire on me.
He has an appointment with the allergist today. Not sure whether or not they'll do any skin tests. It seems doubtful, since they called me yesterday to remind me of the appointment, and informed me then that he could not take any antihistamines for five days prior to the appointment if a skin test is to be performed. Oops. Jeremy pretty much takes benadryl every day twice a day to try to control the itching caused by the cradle cap. They probably should call people six days before the appointment to let them in on that little secret. So, probably just a consultation today, then we'll have to go back for the skin tests. In the meantime, they'll have to prescribe something else for the itching, because he draws blood even if I've just trimmed his fingernails. And what he doesn't need is another source for infection.
Well, I will post more soon.
Holly

P.S....... New Photos!!!

Tuesday, May 31, 2005 3:45 PM CDT

Hi, everyone.
Well, not much new to report here. Jeremy is tolerating his bolus feeds beautifully (we're up to five ounces four times a day), and he only gets his night feed until around midnight. Josh and I are very anxious to get him off of the night feeds, because we can't supervise him the whole time, and he keeps waking up, moving around, and winding up with the tubing wrapped around his little neck. It's very scary for us to come in and find him that way - hopefully we will be able to say goodbye to the night feeds forever by this weekend.
Jeremy did run a low grade temperature through most of the weekend. It started on Saturday, and has stayed pretty much between 99 and 101. He acts like he feels okay, and isn't particularly fussy or anything, so we're assuming that it's happening because he's teething. He did cut one more tooth Saturday night, so that's probably it. But because he was around my sister's children on Wednesday, and then my friend Heather's daughter all weekend, we've been watching him very closely. I called his doctor on Saturday afternoon, but they told us just to watch him and call if it goes over 101, which it hasn't done yet.
The physical therapist came today, and couldn't get over how much progress Jeremy has made since the last time she was here (which was about a month ago). He is really starting to get up on his hands and knees and rock now, and can even stand up for short periods of time by himself. He's not really pulling up on anything yet, but if you stand him beside something and put his hands on it, he can support himself that way for quite some time. She thinks we'll really see some crawling and walking in the next couple of months. On one hand, I am so relieved that he is about to achieve this important milestone. On the other hand, I will certainly miss having him the way he is now. He's (sniff) growing up.
Well, we have a clinic appointment on Thursday with Dr. Lauer (Jeremy's hematologist). It will be the first time we've seen him since before going into transplant. Jeremy also has an appointment with GI coming up soon, and will see the allergist next week. Hopefully I will have nothing important to report, other than that he's doing great.
More then!
Love,
Holly, Josh and Jeremy

Monday, May 23, 2005 1:06 PM CDT

I know I never post when I say I'm going to, and I apologize.
Jeremy has stopped throwing up. We switched his formula back to 24 calories per ounce, and decreased the amount of it he's getting at once, and that seems to have helped tremendously. In fact, I think it's been at least a week and a half since we've had any upset tummy episodes, so that's really great.
Jeremy spent the night with Ma and Pa Pritchett this past Saturday night. It's the first time he's been at their house since he was six weeks old. We had not been able to take him to their house before because of their dog. I think everyone was a little nervous because my parents had never really dealt with the g-tube or the meds before, but they handled it beautifully. They didn't have a single problem the whole time he was there. And Jeremy loved the dog - every time she would bark he would just go bananas. So, Josh and I got a night off, and my parents got a little quality grandparent time with Jem. It was really nice.
Also, Occupational Therapy came today. No real progress with the feedings as of yet; we have an appointment with GI on June the tenth. Hopefully they will give us some insight as to whether this is just psychological, or maybe something physiological. We've read that having an NG tube for an extended period time (and the constant insertion of the NG tube that that entails) can cause some physical trauma. Hopefully that has not happened, but I will ask about it when I take him to see Dr. Schoen.
NEW PHOTOS!!!!
Love,
Holly, Josh and Jem

Thursday, May 12, 2005 8:08 AM CDT

Well, Jeremy is throwing up again quite regularly.
At first I thought it must be the antibiotic that Dr. Albert put him on, so I stopped giving it to him (the culture taken from the g-tube site came back negative for any bacteria). He's been on all of his other meds for a long time, so I really don't think it's that. Besides that, there's really no pattern to the vomiting; it seems to just happen whenever, and for no reason. So I am taking him to see Dr. Albert today, and hopefully will get some answers.
Other than that, he seems to be happy, and doesn't act like he feels bad. Still no progress with the solids, but Occupational Therapy will see him next Monday, hopefully (they cancelled on us this past Monday, and Physical Therapy didn't bother to show up on Tuesday). It's okay about the physical therapy, though; I don't even think he really needs it. He seems to be catching up just fine on his own. I mean, I won't turn them away if they actually show up, but I'm not going to lose any sleep about Jeremy's delays if they don't. The main one I'm interested in is Occupational therapy, anyway.
Jeremy has not been sleeping well through the night for the past four or five days, either. It could be teething (he cut two in one night - one on the top and one on the bottom), or maybe he's ready for only one nap during the day. I will tell Dr. Albert about that, too.
Anyway, I have to go wake him up now, so that we can get ready to go to the doctor. I will post more when I get home if I have a chance.
Love,
Holly

Saturday, May 7, 2005 7:50 PM CDT

I know that this update is a little overdue. But I have nothing but good news to report!
Jeremy has been released from BMT service, and transferred back to the care of his hematologist, Dr. Lauer. He will be seeing Dr. Lauer every other month for awhile, and he has to see the BMT team again in September, for his 1 year post-transplant checkup. He also has clearance to once again visit his regular pediatrician, Dr. Albert, for incidental needs. He has gained about a pound and a half this past month, and is not throwing up at all anymore.
He will be starting occupational therapy and physical therapy next week. Occupational therapy will address the feeding issues, and physical therapy will help him with his crawling, walking, etcetera. Jeremy seems to be making progress as far as the physical aspect is concerned; we all believe he is very close to crawling, because he has started to really spend more time on his tummy, and can push up on his hands and knees relatively well now. Feeding, on the other hand, has taken a significant turn for the worst - he will not eat ANY solids now, and only takes the bottle right before bedtime. I spoke with the occupational therapist on the phone the other day, and she assured me that it would happen, but told me that these things usually take a long time to sort out.
Jeremy also saw his pediatrician on Wednesday for a weight check (which was down from clinic on Friday - possibly a difference in scales). She also prescribed some antibiotics for his g-tube site and did a culture of it, because it looks a little infected. The skin at the back of his neck has also been really red and irritated, and Jeremy has been scratching it constantly. She gave us another kind of steroid cream that is a little stronger than the one they gave us at Egleston, and it worked like a charm. Except for the cradle cap which will NOT go away, Jeremy's skin looks better than it has since March. So, overall, his first visit back with his pediatrician was a wonderful success. She also is very particular about him, as far as keeping him away from the other sick children at her office. She saw him on Wednesday before they even opened. She also lets us wait in the infant waiting room, where all of the new babies who aren't immunized wait, so that he will be exposed to even less. She told me that she has also informed all of the office staff that a call from me must be handled immediately. I just love her. Her son plays T-Ball with my nephew, Matthew, so my parents see her whenever there is a game going on. At the game on Friday, she told my Mom that she thought Jeremy just looked fantastic. She said she was excited about seeing him again, but nervous about what he would look like. She said, "I walked in expecting to see a gaunt, pitiful looking baby, but I was so surprised. He looks great, and he was laughing and playing. He's gonna be just fine."
I can never hear those words often enough, I guess.
The best thing is that Jeremy does not have to wear the mask ever again! Not even in the hospital! After our appointment with BMT on Friday, we went right up to the GI lab and he didn't wear a mask the whole time. My dad and I could barely contain our happiness, and both of us cried at least once - Jeremy's eyes were as big around as little saucers, just taking it all in.
I even took him to the Fire Station on Tuesday to see my dad at work (of course, I couldn't help calling first, to ask how many people were there, and to make sure no one had been sick). Jeremy had a blast. He was the center of attention and loved it. Ms. Nancy even held him for a little while (I have known her since I was very small), and my dad was so proud to be able to show him off a little.
I, on the other hand, have been really sick since Wednesday, and had to go to the doctor myself. My dad came and helped with Jeremy on Wednesday, and my mama was here all afternoon on Thursday. I was running a pretty high fever, which seemed to get better yesterday, but came back today. I called the doctor, and if it's not better by Monday, I will need to go back in for a chest x-ray and some steroids, probably. It's just a sinus infection and bronchitis, which I get every year around this time, but it really has done a number on me this year. I just pray, pray, pray that Jeremy will not get it. I have been very careful (as usual) about washing my hands, and try to wear a face mask when I am holding him. He is a little congested, and we are giving him Sudafed for that, but so far no cough, and no fever. Plus, he's on two different antibiotics already, so hopefully those will provide some additional protection for him. Please pray that he will not catch this awful stuff - he does not need another setback now.
Before I go, I would like to tell you that Jeremy has done three new things this week: He has started clapping (the first time was at the fire station when my dad was holding him and he had an attentive audience), he waves to himself in the mirror, and we think he tried to say peek a boo on Wednesday (came out as "ee-ooh" when he pulled his silky off of his face).
Love,
Holly

Thursday, April 28, 2005 7:47 AM CDT

Sorry it's been so long since our last update, but no news is good news, right?
Jeremy is doing really well since switching the formula. So well, in fact, that I am going to have to go clothes shopping for him this weekend, because he has outgrown almost ALL of his clothes. I am not sure how much weight he has gained, but we will find out tomorrow at clinic. I'm betting it's at least another 6 or 7 ounces. Thank goodness! I was beginning to think that he would be wearing 6-9 month clothes forever! On the bright side, I have gotten A LOT more use out of his infant carrier than most parents do (he's almost 14 months old, and still fits into it fine).
He seems to change a little in appearance almost every day. Josh and I both feel like he looks a little different every morning - each day he's a little less swollen, less hairy, and more like the baby he was before any of this started. We are so thankful.
We go back to clinic tomorrow, for just a standard check, and then he gets his g-tube cut down to a genie after we're done with BMT. I, for one, will be very happy to see this tube gone - it makes me a nervous wreck. There's no way to secure it to his clothes (no tape will adhere to the plastic) and I am constantly terrified that it will get pulled out somehow (it has been know to happen). But as of tomorrow, it will just be a tiny button at skin level, and I will be breathing a lot easier once it's done.
I really don't know how much longer he will be needing it, anyway. He is getting a lot better with the bottle, but he's kind of slowed down a little on the solids. Unless it's something he can easily choke on - then he's all about it. I think he just likes to scare me and keep me on my toes.
I will try to post more tomorrow after clinic.
Love,
Holly

P.S. Happy Birthday, Mama!

Tuesday, April 19, 2005 9:07 AM CDT

Yesterday's clinic appointment was wonderful!
All of Jeremy's counts are fine. He has gained over one pound in the past two weeks. And, best of all, we were told that we could finally take Jeremy OUTSIDE without a mask on, because today is his last day of cyclosporine.
So, last night was the first time in almost eight months that we could take Jeremy into the yard without that awful TB mask on, and believe me, we didn't waste any time. His Pa sat on the porch with him in the rocking chair for a little while when we first got home from clinic, and then when Josh got home, out we went.
His swingset came yesterday, so Josh put that together. While he was doing that, Jeremy and I walked all around the yard, and I put him in his stroller and took him for a little walk down the street. When we got back, Josh had gotten the swingset put together, so he played on that for a little while.
And boy, was he worn out last night when it was time for bed!
We have another appointment with BMT in two weeks (next Friday, the 29th). We will find out at that appointment if we now get to be released from BMT service back into Hem/Onc service. To finally be released from their department is a very big deal. After the appointment, we will go to the GI lab to have Jeremy's g-tube cut down to a button. And maybe, next time we go to clinic after that, we will be going back to see Dr. Lauer again, who is Jeremy's hematologist.
So here are some pics of Jeremy's first real trip outside since he was three months old. Enjoy!
Love,
Josh, Holly and Jembug

Saturday, April 16, 2005 11:29 AM CDT

So far so good.
Jeremy has a clinic appointment on Monday, so keep your fingers crossed that all of his bloodwork will come back normal.

Also, I have to say that this coming Wednesday is our LAST DAY OF CYCLOSPORINE. This was the last of the immuno-suppression drugs that Jeremy needed to be tapered off of, and we're almost there. After this is done, he will finally be able to go outside without a mask on! And visit public places! We are so excited.

Although his feeding has mildly improved, we still have a long way to go until he is taking in everything he needs on his own. He is scheduled to have the g-tube cut down to a button on April the 29th. It will be a relief to once again have him without any tubes sticking out anywhere.

Important! The Histiocyte Association is now selling Histiocyte Awareness bracelets (just like the Livestrong, Breast Cancer, etc.) I would like to take this moment to plead with all of you to help contribute to research for this disease by purchasing some of their bracelets. All proceeds do go to research funding for the Histiocyte Disorders. Here's how they come:

Youth Pack - 5 youth size bracelets (7 1/2" circumference)
Adult Pack - 5 adult size bracelets (8 1/4" circumference)
Combo Pack - 2 adult, 3 youth bracelets

Each pack costs $12. You can call 1-800-548-2758 to order your bracelets.

Even though Jeremy is basically "cured" of HLH, there are still a lot of other children diagnosed with it regularly. And not many of them are as lucky as Jeremy. Please do your part to help researchers understand more about this rare and terrible disease.

Thanks so much.

Holly, Josh and Jeremy

Thursday, April 7, 2005 11:38 AM CDT

Well, I hate to jinx myself, but so far, everything is still going really well.
Jeremy is starting to eat more (both from the bottle and solids), and has not had any more vomiting or diarrhea since the formula was switched. He seems to be in a better mood, and slept all night last night (9 p.m. until 9 a.m.) without so much as a peep. The rash is pretty much gone - he still has it on his chin, but I think it's probably because he sticks his tongue out all the time, or is always chewing on something.
We've switched home healthcare companies, and so far are very happy with them. We are going to be getting an additional Kangaroo pump from them that is actually portable (AKA: PET pump) so that we will have one for at home and one for on the road. This is going to be a lot more convenient, because Jeremy is on the pump 24 hours a day. I will also be using the smaller one at home when he is awake, because it's really difficult to maneuver a one-year-old and an IV pole when you're by yourself.
Be sure to check out the link at the bottom of the page for our new Typepad site; there are a lot more pictures of Jeremy there.
By the way: This hat picture is for you, Granbob.
Love,
Holly, Josh and Jeremy

Saturday, April 2, 2005 11:31 PM CST

I'm putting a new picture in the photo album, although it's not really a photo. It's a excerpt from the Red Cross newsletter 'Lifeline" that has a testimonial involving Jeremy.
We are doing well today, and his clinic appointment went well. The new formula is working out great, although it is very expensive. Luckily, the hospital arranged for us to get some help to get this formula for him (it costs $45 a can).
He is napping now, even though he slept until almost one o'clock this afternoon - he was pretty restless last night and kept waking up for no apparent reason, so I just let him sleep in. It has, however, thrown our schedule into a tailspin.
I will update more later. Please keep my friends Missy and Kevin Otts in your thoughts and prayers, as they are still with Cody at the hospital.
Love,
Holly

Tuesday, March 29, 2005 1:45 PM CST

You guys won't believe this, but this update is actually coming from our home!! We finally got internet access.
Unfortunately, Jeremy is still in the hospital. Jeremy vomited yesterday morning, so they finally decided to switch him to something called Peptamin Jr. Well, about three or four hours after that, Jeremy threw up again. So they decided to stop formula altogether and give him only Pedialyte. He tolerated that through the night, but was very nauseous when he woke up this morning, so they stopped the Pedialyte and decided to start another IV on him. His chemistries are also abnormal this morning (creatinine, BUN, and potassium for you nurses out there), which is probably an indication that he is becoming dehydrated. Dehydration makes starting an IV much more difficult. So they tried on the floor, then got someone from PICU, and still no IV access. At this point, he is getting IV fluids through his G-Tube (it sounds weird, but the nurse told me that they do that sometimes), with hopes that it will rehydrate him well enough to start an IV.
Meanwhile, they are thinking that it's some sort of motility problem, especially if he's having trouble with something as simple as Pedialyte. So the doctors are trying very hard to get someone from GI to finally come and look at him, and also to have them suggest an alternative formula.
Josh and I have not been there for any of this, unfortunately. Here's the story:
About two months ago, Josh and I scheduled dentist appointments to have some work done. Josh needed three wisdom teeth pulled, and I needed two root canals. Since it is very hard to get in with a dentist in the first place, we were reluctant to reschedule these appointments. So it was decided that we would keep our appointments, and Nana and Grandbob would stay at the hospital with Jeremy until today.
Needless to say, things at the dentist's office did not go as planned.
While the root canal on one tooth went fine, it was decided that the tooth behind it (my very back tooth) should just be extracted. Even though I was only planning on having the one root canal done yesterday, I told them to go ahead and pull the tooth behind it while I was already there - it's very hard to plan ahead when you have little Jeremy to consider.
Meanwhile, Josh's extractions on the top went very well. On the bottom, however, the dentist thought that the root of the tooth may have been wrapped around the nerve. If this was approached incorrectly, Josh might have ended up with lip and tongue paralysis. So, while I was in the next room having my procedures done, they sent Josh to the oral surgeon's office in Athens. At his office, they decided that it was not the nerve, but a little group of muscle, which then had to be scraped away from the root of the wisdom tooth in order for them to be able to extract it. Seven stitches (and no anesthesia - Josh was afraid to be sedated because he was going to have to be able to drive to the dentist's office in Winder to pick me up afterwards) later, Josh was able to come back to Winder to pick me up.
Anyway, to make a long story longer, Josh and I went immediately to pick up our medication and came straight home and have been in a considerable amount of pain ever since. My sister (kind soul that she is) came over last night, and helped do some backed-up laundry, washed dishes, cleaned the fridge, went to the grocery store, and then vacuumed and shampooed all of our carpets. So at least there was no housework to worry about.
And then all of this started happening with Jeremy this morning.
They assure me at the hospital that he is perfectly stable and that I shouldn't worry. Grandbob and Nana say that they have it totally covered until tomorrow, and that we should not worry a bit (they're the greatest), and the nurses have assured me that if there should be even the slightest change in his condition, they will notify me immediately.
So, Josh and I have decided to take it easy for one more day, and spend the rest of it "laid up in the bed" (as my Nanny used to say) and see how much better we're feeling in the morning. If I get any further updates from the hospital, I will let you know. Until then, please just hope and pray that he stays in this stable condition long enough for Josh and I to be in the shape to go to the hospital and care for him ourselves again.
Love,
Holly

Sunday, March 27, 2005 9:15 PM CST

Well, as anyone who has ever had an extended stay at the hospital before knows, nothing EVER happens on the weekends. So, we haven't really made much progress with the feeding, but he hasn't had any more vomiting, either, praise the Lord. I am still pessimistic about it staying this way once they stop the slow drip feeds and start the boluses, but I am still trying to keep my fingers crossed and hope for the best.
We didn't see the BMT doc for very long today (and we have yet to see anyone from GI), but somehow Dr. Chiang did arrange for a geneticist to come to our room and talk with me and Josh about what this meant as far as more children are concerned, and it's a little bleak.
HLH is caused by several different genetic mutations. They only know how to test for two of them. They did these tests on Jeremy, both of which came back inconclusive. Which means that although Jeremy does have the inherited form of the disease (based on age of onset and range of symptoms), it's not something that they can test for prenatally. Since any future baby we have has a one in four chance of having this disease, our only real options for more children are adoption or IVF. So this is something else that Josh and I are trying to deal with, as we did want to have another child at some point. But I guess it's better that we know what our options are, rather than being unsure, right?
Jeremy will hopefully receive a more thorough examination tomorrow, and I will update more then. Overall, he seems to be feeling much better. He got through the entire day today with no pain medicine until around eight o'clock tonight, so that's something, right? And he isn't throwing up. And he's becoming more active, and starting to play and smile again. So we're pretty happy about that.
It looks like we might be going home towards the middle of the week, as long as things continue to go well... this is hinging on a number of things, such as tolerating a bolus and no vomiting or diarrhea, so pray that things continue to go well and that we can be on our way home soon!
Love,
Holly

Sunday, March 27, 2005 0:55 AM CST

*****NEW PHOTOS!!!*****


Sorry I've run out of time to update tonight, because I've used all of it trying to put more recent pics on the webpage. Hope you all enjoy them!!!!
Nothing has changed significantly since I last posted. I will try to update more tomorrow. For right now, though, it's time for bed!
Love,
Holly

Wednesday, March 23, 2005 9:40 AM CST

Sorry it's been so long since my last update, but things have, as usual, been kind of crazy here at Egleston.
Jeremy has not really shown any signifigant improvement as far as the vomiting is concerned. He is not tolerating the Alimentum formula, and vomited quite a lot this morning. Also, the G-Tube is causing him pain, and he shrieks every time anyone bothers it at all. It is quite red around the insertion site, and although he was supposed to be seen again by GI two days ago, we have yet to see anyone from that department in his room.
Unfortunately, I had somewhat of a falling out with his doctors this morning. I do not want them to give him any more of the Alimentum formula. Also, I want them to make sure that GI makes it up to see him at some point during the day today. I think that we should also see an allergist, because it is very common for children to develop allergies post-transplant. Since it's obvious that the skin rash was caused by the change in laundry detergent, it makes me wonder what else (allergy-wise) could be going on with him. I have put in a call to Dr. Filipovich in Cincinatti, and hopefully will hear back from her today. I would like for her to be involved in his care from there, and do a phone consult with Dr. Chiang.
Josh finally got home from Florida yesterday, and spent the night here at the hospital with us. Nana and Grandbob were going to stay with Jeremy tonight at the hospital so that Josh and I could go home and spend a little time together, but with everything that is going on right now, I am not sure if that is going to happen or not. It will depend on how much we get accomplished before rush hour hits, I suppose.
I will try to post more later. We finally have internet access at home now, so it will be much easier for me to post new pictures and update more often once we get to leave the hospital.
Love,
Holly

Wednesday, March 16, 2005 9:49 PM CST

Jeremy's endoscopy went fine this morning, and they didn't see anything that looked bad or would indicate any GVHD. The biopsies won't be back until tomorrow, but the docs seem pleased with what they saw. His stomach is "red" (whatever that means) and the GI specialist said that it would need to be looked at more closely. They are going to be doing some sort of upper GI x-ray tomorrow with contrast, so that they can see exactly what his digestive anatomy looks like, just to make sure there are no abnormalities.
Also, I found out tonight that they have discontinued his Cellcept (one of the immuno-suppression drugs he has to take to keep from getting GVHD). They had mentioned in clinic on Monday that they might do that, because Cellcept can be hard on the digestive system, but I don't recall ever hearing for sure if that was the plan or not. When I was giving him his meds tonight, I noticed that Cellcept was not one of them (the nurses have been medicating him the rest of the time). I asked Lynn (his nurse) about it, and she looked back in the chart, and found that they had discontinued it when we were admitted.
I am desperately hoping that this will be the answer to the stomach issues. He really is doing so much better - no vomiting or diarrhea yet, and he's taken (BY BOTTLE!!!) about seven ounces of half-strength Alimentum formula this evening, plus a slow NG feed of the same thing.
Although I am somewhat nervous about taking him off of this medication without tapering it, I am glad that we are already one whole step closer to ending the immuno-suppression therapy. The plan was to take this med away bit by bit as we did with the steroid, and like we're about to start doing with the CSA. It was to be the last drug we weaned him off of (steroid first, CSA second, and Cellcept last). But now, we only have to get rid of the Cyclosporine (CSA), and then he will be able to go outside without his face mask on. Instead of another three or four months of this, it looks like probably only another six or seven weeks. I am so happy that there's the possibility of being able to play outside by this summer. '
I also have to tell everyone that Jeremy is only on THREE meds around the clock right now. We are officially down to only Prevacid (for reflux), Cyclosporine, and Bactrim (prophylactic antibiotic). Of course, he still has other meds that he takes if he needs them (Zofran and Tylenol 3). They might start the Reglan back up if he starts vomiting again, but we'll be okay with that... three meds are a lot easier than ten, let me tell you. Plus, once he's off the immuno-suppression therapy, we'll be able to get rid of Bactrim, as well. Maybe, in another month and a half or so, he will be down to only one med twice a day.

Wow. Three months ago, I didn't think I'd ever be able to write that sentence.

So, I will update more tomorrow after the x-ray and after I speak more with the doctors. Until then, just keep checking in on us and praying for us - we need all the help we can get!!!
Love,
Holly

Tuesday, March 15, 2005 11:39 PM CST

I know I always update really late at night, but I just have a lot of trouble falling asleep at the hospital. I don't know if it's the noise, or the light, or (most probable) the STRESS, but I never fall asleep before two or three in the morning when Jeremy is inpatient. I just can't ever seem to get used to being here, I guess.
Anyway, Jeremy has been doing pretty good today. He didn't have anything to eat or drink after they turned his feeds off at two o'clock this morning, and was really fussy ALL afternoon. My Dad was here, and we both thought that Jeremy must be in pain, because he was just so inconsolable. Because of his GI issues, the doctors didn't want to give him any narcotic pain medicine, so instead they gave him Ativan to try to relax him a little. Even then, he still was just crying for at least two or three hours straight. Finally, because I was pretty close to reaching my patience limit, I decided to try to offer him a bottle of Pedialyte. And you just won't believe what happened: Jeremy took FOUR WHOLE OUNCES from a bottle. I can't even remember the last time he did that all at once. He downed all of that in less than five minutes. That seemed to satisfy him for a little while, and he didn't get fussy again until after his bath (we are back to doing the 10 minute Aveeno soaks again because of the eczema). So I thought, "What the heck?" and offered him another bottle, of which he drank 3 1/2 ounces.
Additionally, Jeremy's rash is much better - his face and back are pretty much clear, and the rest of the rash seems to be fading from his abdomen, arms and legs.
Also, he kept the Pedialyte down. All seven and a half ounces of it... He never does that with formula at home.
So now I am really wondering if all of this could be because of a milk allergy (not the first time we've thought this, you know). I mean, no formula since 10:30 on Monday morning, and within 36 hours, his rash starts to clear up, he is acting hungry and is eating without throwing up (and eating more at once than I even attempt to bolus him at home). Of course, his diapers are still pretty messy, but he hasn't had anything but Pedialyte, so what can you really expect?
Tomorrow, Jeremy will be having an upper and lower endoscopy. They will take tissue biopsies to look for GVHD, as well as other things. While he is sedated, they will also do a skin biopsy, as ordered by the dermatologist who saw Jeremy today (who also agreed that the skin rash was probably eczema). When we met with the GI doctors today, there was also a lot of discussion about placing a G-Tube (a tube which is surgically inserted directly into the stomach through the abdomen).
When we met with them this morning, I was all for placing a G-Tube. First of all, the adhesive we use to stick the NG-Tube to Jeremy's face is very hard on his skin, and leaves red marks whenever you take them off. This process is really painful for Jeremy because of the excess hair on his face caused by the cyclosporine. Also, he pulls the darn thing out at least twice a week and we have to put it back in (which we're really good at now, but it's still stressful). And we think that some of his eating aversion is because of the irritation the NG-Tube causes in his throat. Plus, they're really long, and now that Jeremy's more mobile, it's becoming a strangulation hazard for him (I came in one morning to get him up last week, and it was wrapped all the way around his neck, TWICE - yikes). And since, as of this morning, the end of the tube was nowhere in sight, I was ready to make the switch.
But now, because of him eating from a bottle so well tonight, I don't know what I am going to do yet. I suppose I will wait and see what the results of the biopsies are, and make my decision then. Also, I would like for him to be seen by an allergist, just to be certain whether or not he has a milk allergy.
So, to sum up, we still really don't know what the heck is going on with our boy.
But I think we're closer now to getting some answers than we were a month ago, and that's a relief.
I will post tomorrow when he comes back from surgery.
Love,
Holly

Monday, March 14, 2005 11:00 PM CST

Sorry I didn't get a chance to update when we got released last time (Thursday, March 3rd). Most of the time, when you find out you're going home, you're in such a mad rush to get everything together and organized and to the car that there isn't much time for anything else.
So, since we're back, I thought I'd update.
Jeremy is back in with vomiting and diarrhea. He did come to clinic on Friday, and was tested again for C-Diff, because sometimes it takes more than one round of antibiotics to get rid of it. The good news is that his C-Diff test came back negative. The bad news is that now we've got to look for other reasons for his GI problems. Tomorrow we will see someone from GI for a consult, and he will probably have some sort of endoscopy either tomorrow or Wednesday.
The other thing that is concerning the BMT team right now is the rash that he has, which, until now, has been classified as either eczema or contact dermatitis. But since it seems to be spreading (and getting worse), there is growing concern that this may be GVHD (graft vs. host disease). Since he is completely tapered off of the steroids, and since his CSA level has been sort of low the past few weeks, he is more prone to developing this condition.
Luckily, we were on the lookout for anything amiss with him, so he did not get as dehydrated this time as he did last time. So he is not feeling quite as bad as he did when he first came down with C-Diff. Our nurse, Mary, told me that last time he was basically in acidosis (sp?) and that is why it took so long for him to recover and start feeling better. But he has been very playful since we got here this afternoon, and that is such a relief.
His team also brought up the possibility of having us move back in with Nana and Grandbob for the time being, until we can sort out what is going on with him, as they do not want him to be very far away from the hospital with these kinds of problems. I am guessing we will wait to see what the GI docs say about him before we make a decision about that.
Well, I should go to bed now. I will TRY to update more tomorrow.
Holly

Sunday, February 27, 2005 11:51 PM CST

We are STILL at Egleston.
Jeremy seems to be feeling better, although he is still having some GI issues.
I had a long talk with his BMT doctors this morning, and made some decisions about some of his meds. Jeremy has been throwing up for months now, sometimes three or four times a day. Because of this, it is impossible to make sure he gets proper nutrition (I mean, there are only so many hours in the day, you know?). His weight has pretty much stayed exactly the same since we left the hospital after the transplant. It may go up every once in a while, but it always drops again.
SO.
Our first step is to change one of Jeremy's reflux medications, as I do not think the one he's on now is doing any good at all. Maybe he's built some sort of tolerance for it, since he's been on it for almost nine months now. So today we took him off of Zantac, and started him on Prevacid. Hopefully this will help his reflux, but it will probably take a little while for us to notice any difference.
Secondly, we are going to get a consult from GI, and possibly do some swallowing studies. We are all concerned about Jeremy's super-sensitive gag reflex (that child gags on his own thumb sometimes!). The BMT docs think it's a good idea to sort of wait until the C-Diff clears up (which we've now found out may take a couple of months), but I think I'm really going to push to have it done while we're still inpatient, probably. First of all, I want it done as quickly as possible. Secondly, I DO NOT want to have to take Jeremy to the GI clinic, with his immune system being what it is. I will talk more with Dr. Chiang about this in the morning. If we end up going home tomorrow, though, I suppose it will be a non-issue and we'll have to wait. I guess we'll see.
Josh and I were supposed to go out of town this weekend to visit our friends in Charleston, but we're not sure if that's going to happen now or not. Plus, Josh is extremely ill, and is at home with a sore throat, a terrible cough and a temp. I feel torn, because I cannot be in both places at once, but I did manage to go home for a little while today, and picked up some soup and medicine for Josh on the way. I guess it's good in a way that both of them got sick at the same time - unfortunately, Josh can't be here at the hospital with us, but at least we're not at home being terrified that Jeremy is going to catch whatever Josh has. Think silver lining... :)
Before signing off, I just wanted to share something that my nephew, Matthew (age 7), wrote for school:
"I want to viset my baby cosen, babe Jeremy. he is the one that is very sick. So pray for him because he got blood test's and other bad stuff."
Thanks, Matthew..
Love,
Holly

Friday, February 25, 2005 12:41 AM CST

Well, we are still at the hospital.
Jeremy seems to be feeling a little better today. He was very cranky and cried pretty much all morning, so they gave him Morphine, and that seemed to help a lot. His stool test came back positive for C-Diff, so they are going to start him on an antibiotic.
They do not think this is the only reason Jeremy is sick right now, though. Dr. Horan told me that they really only see this immediately following transplant, or following extended IV antibiotics. So, we are still looking for other underlying causes.
The good news is that Jeremy seems to be more comfortable, his labs look much better today than yesterday, and his diarrhea seems to be clearing up. And thankfully he has not thrown up any more since we got here Wednesday night.
Well, that's all for now. I know we'll be here for another night at least, but I don't know anything beyond that, really.
More later.
Holly

Thursday, February 24, 2005 8:39 AM CST

Sorry I never got to update after the last entry, but Jeremy ended up being released from the hospital before I really had a chance to.
But now we're here again, so I thought I'd use this opportunity to update.
We had to bring Jeremy in to the Emergency Department last night because of vomiting and diarrhea. He was very dehydrated when we got here last night, but seems to be doing better now that he's received some fluids. They didn't have a room for us on our regular floor, so we ended up in room 201 in the Sibley Heart Center.
We haven't seen his BMT doctors yet - it probably will be a little later than usual, since we're not on the third floor. I don't know if we'll be staying another night or not, but I will try to update again if I have time.
Love,
Holly

Sunday, February 13, 2005 7:19 AM CST

Greetings from Egleston!
Yes, we are in the hospital. Jeremy started running a little temp yesterday evening, so they had us bring him in to the ER last night. Aside from the fever, and maybe sleeping a little more than usual yesterday, he seems like he feels okay. They did a chest x-ray last night in the ER, and the doctor told us that there was a little spot on it which might or might not be a small pneumonia. They have already started treating him with a strong antibiotic that should take care of it, if that is what it is. We will know more once the radiologist reads the x-ray this morning, and the HemOnc team does their rounds. That will probably be around nine or ten o'clock. So I will try to update again once we know for sure what is going on.
The good news is that all of Jeremy's counts last night were completely normal. They drew a blood culture as well, but it takes 48 hours for anything to grow, so we won't know about the blood cultures for a couple of days.
I am going to check on the baby now - I think he's still in there sleeping with his Daddy. More later.
Holly

Wednesday, January 12, 2005 8:06 AM CST

Hi, everyone.
We are at Egleston this morning, because Jeremy is having his central line removed. It just stopped working about two weeks ago. We were considering having a port put in, but since the IGG test came back HIGH NORMAL, we decided just to leave well enough alone. Besides, they told us that he's just about to the point of only having heel or finger sticks for blood collection. So, for the first time in ten months, Jeremy is very close to having his first TUB bath. We are all very excited.
We had to make an unscheduled visit to the clinic yesterday, because Jeremy's nausea and vomiting had gotten worse. He's been throwing up occasionally since last Wednesday (maybe once a day), but he just wasn't able to stop yesterday morning, so we brought him to see Dr. Chiang. All of his blood work was okay (slightly elevated WBC count of about 25,000 which indicates an infection), but since he hasn't had any fever, they decided it was probably just a little stomach bug. We're just relieved it's nothing more than a normal childhood ailment. He slept well last night after he got some anti-nausea medication, and seems to be feeling A LOT better today.
We will be getting internet at home probably in the next week, so I will be able to post more pictures and start updating more regularly.
I hope everyone is having a FANTASTIC New Year!
Love,
Holly, Josh and Jeremy

Friday, January 7, 2005 10:38 PM CST

Hello everyone.
We know it has been too long since our last update, so here is the news of the past few weeks.

Jeremy is doing great, growing, getting better and stronger everyday. The Day +100 Chimerism blood test results are that he is 100% donor cells, which means the HLH is really gone! (this is where we all shout and throw confetti into the air.) His blood counts this week were WBC over 15, Hemoglobin over 14, and platelets at 350,000 range. This week his IGT showed that his immune system is starting to function well enough as to no longer require the IVIG monthly infusions.

On the downside, both lumens of his central line are non-functional now, so he will have surgery on Wednesday, January 12th to remove it. We don't know yet if they will put in a port or not. He is still have some trouble eating, with periodic vomitting when his stomach is full, but is gaining weight steadily in spite of this. He likes his cereal and fruit, but has to be bolus or NG tube fed for all the formula he won't take by bottle. We are hoping his appetite will increase as time goes by.

Santa was good to Jeremy, filling his world with more toys than he knows what to do with, but his best Christmas present was to be at home with his Mom and Dad. He also enjoyed Christmas visits from all four grandparents, cousin Matthew, Big Grandma Huggins, and all the aunts & uncles.
We all look forward to a year of growing health in 2005!

Keep us in your thoughts and prayers.

Grandaddy Winstead (temporary scribe for Holly & Josh)

Wednesday, December 15, 2004 3:22 PM CST

Hi, everyone.
I am sorry that I don't get to update more often. We don't have internet access at home right now, and so I just post whenever I get the chance.
Jeremy is doing really well right now. He still won't take more than about an ounce of formula at the time, but he does tolerate much larger bolus feeds (we are up to four ounces every three hours). We have started cereal, but he's not that crazy about it yet. We are down to bi-monthly clinic visits, because his counts are better than mine. His WBC count is over 11, and his platelets are in the 230,000 range. He's having a little trouble sleeping through the night, although that has gotten better since we stopped the IV fluids. He seems to be pretty happy most of the time, and seems more alert and curious about things with every passing day. He's also discovered that he knows how to roll his tongue, and this is an endless source of amusement for all of us.
We have really tapered the steroids down, and he is only getting .05 ml. of methadone PER DAY!!! One more week, and he'll be "off the sauce" completely. After we completely take him off the prednisolone, we'll be able to start getting rid of the cellcept and the cyclosporine. We're already completely done with the Acyclovir (an anti-viral medication), and he's only getting the NG feeds for eight hours a night instead of ten.
So, gradually things are getting better and better.
He had the 100 day chimerism test last Wednesday when we went to clinic, but because of the holiday we won't hear anything back from it until after January. I'm not worried, though; I know it will be great. He's such a little superhero.
We are so lucky to have our little Jeremy home, and could not wish for anything else.
Have a safe and happy Christmas and New Years!
The Winsteads

Monday, November 29, 2004 11:52 AM CST

Hi, everyone!
Not much has happened since I updated last. Jeremy went to clinic last Wednesday, and was taken off of the IV fluids, thank goodness. He is still on the NG feeds, and getting bolus feeds every two hours, but I can live with that a whole lot easier than I can the IV.
His counts are still great, and he seems to be sleeping better than he was. His hair is starting to come back, and he has little blonde wisps all over his head. He is, unfortunately, starting to get "Cyclosporin Eyebrows" (cyclosporin causes a temporary increase in facial hair, but it should fall out within a month or two after he gets off of it). His blood pressure has been kind of high the last four or five days, so we are just keeping a close eye on it. We will ask the doctor about that on Wednesday when we go back to clinic.
And after our clinic appointment on Wednesday, we will be going home!! My mom and dad are taking off of work to come help us move, and Josh will be here that afternoon as well. We spent the weekend getting the house ready for Jeremy's homecoming, and Josh put our Christmas tree up last night. We've also painted the baby's room - we didn't have time to do it before he was born. We closed on our house a mere nine days before his premature birth. So everything is ready there - all we have to do now is get him home!
Anyway, I hope everyone out there had a wonderful Thanksgiving. We sure did here - Bob's Disciple Group hired a gourmet cook to bring us Thanksgiving dinner, so that we wouldn't have to cook. Then Josh and I went to my brother's house for supper, so that I could see my family for Thanksgiving (which was also my birthday). We hated to leave Jeremy behind on a family holiday, but he'll be able to do things like that soon enough...
Love,
Holly, Josh and Jeremy

P.S. NEW PHOTOS!!!
All of these are "Transplant Day" photos.
FYI: Those big red spots on his skin are the hives he developed as a result of the ATGAM - and they got much worse before they got better...

Tuesday, November 23, 2004 9:23 AM CST

Hi, everyone!
It's me, Holly. I know it's been a little while since I could get around well enough to get an update out, but this one's gonna be a good one, I promise!
My ankle is much, much better. When I went to the orthopedist the Tuesday after my accident, they did a repeat x-ray. Although the Emory ER doc said it was fractured, it turned out that it was just a really, REALLY bad sprain. When they ligaments tore, they pulled little pieces of bone with them, so I had several bone chips in my ankle, and torn ligaments and tendons. But thankfully no fracture. They wanted to put me in a cast for four weeks anyway, but my foot was too swollen the first two times I went to the orthopedist. And by my third visit, I was up and walking, so they decided I could be released from their service. So instead of being off of it for four to six weeks, I was on crutches for only three and a half weeks. I am walking around pretty well now (still with the occasional limp), and have not used crutches in about five days.
Being up and around earlier than expected is wonderful! Also, the timing of my recovery was pretty much perfect - Jeremy went for his clinic appointment on this past Friday, and we were told that he is clinically well enough to go back home to Winder! His counts are all pretty much normal, and they're already starting to taper down some of his medications. He is still on the IV fluids and NG feeds overnight, but he is eating much better (almost five ounces already today, and it's not even 11:00 yet)! He had almost 13 ounces total yesterday. The diaper situation has REALLY gotten a lot better, and we are pretty much down to one or two dirty (but normal - no blood, no mucous) diapers PER DAY! His mood seems to be brightening daily, and we are so happy about that (steroids do have the tendency to make you QUITE cranky).
Anyway, I hope to have new pictures up VERY soon. Josh will be here for the four day weekend, and we are looking forward to a relaxed Thanksgiving. We are working hard at the house to prepare it for Jeremy's homecoming, and hope to start the process of moving very soon. Love to all, and I will update again soon!
Love,
Holly, Josh and Jeremy

Monday, November 1, 2004 1:53 PM CST

This is Holly's mother, and she asked me to update this website. Holly is at their home today in Barrow County - she is suffering from a fractured ankle. She went to the emergency room at Emory, where they made x-rays, etc. Since Holly's foot was already swelling, the doctor put on a temporary cast there, and she has an appointment at the orthopedic clinic in Athens for 9:30 tomorrow. She and Josh miss Jeremy terribly and they will go back to Atlanta after her appointment.

Jeremy is out of the hospital, except for the day trips to "clinic" at Egleston. He has to stay close to the hospital, and we are all so thankful that the Winsteads live only 2.8 miles from Egleson. Josh's aunt, a registered nurse, is coming for a visit from Florida to help with the baby for a week or two, and we are all also so grateful to her and for her.

Jeremy's platelets are staying up (yea! yoohoo! high five!). Thanks again to all of you who gave him some of yours --- you're the best!

Thursday, October 28, 2004 7:38 AM CDT

Hello from Egleston (again)!
Yes, we are back.
Last night, when I hung Jeremy's IV fluids, I noticed blood going back up the tubing from his central line. I called the nurse's station at the hospital, and tried to flush the line as they instructed. However, it would not flush, and blood went back up into the syringe. So they told me to call Home Healthcare, who came out to the house. She tried to flush the line (more forcefully than I had the nerve to try), and that's when she discovered that he had a hole in his central line.
We got to the emergency room around 2:30 this morning, and the surgeons tried to repair his line. They could only get one of the lumens to work, though. So Jeremy will be having surgery sometime today or tomorrow to replace the line. They are not sure when he will be going down yet. Until then, we are in room 363 at Egleston.
Some good news: Jeremy had his first clinic appointment yesterday. Usually, when you get released from the hospital, you have to come to clinic to have your blood counts checked every Monday, Wednesday and Friday. Jeremy's counts were SO good yesterday (WBC: 7,000; HGB: 10.5; Platelets: 98,000) that we wouldn't have had to come back until MONDAY!!! So that was good.
Anyway, I'm going to go try to catch some sleep, as I have been up for about 26 hours now. I will update more when I have a chance!
Love,
Holly

Tuesday, October 26, 2004 12:39 AM CDT

We are going home!!!
The doctors came in this morning to let us know that we were being discharged today. Since switching his formula, he is not having any more tummy issues. And his blood counts look great. So we are going home today.
He will still have his NG tube so that he can get meds through that, and he is going home on IV fluids. Home Healthcare is going to come out this evening to show us how to hook him up to the IV pump, and hang his fluids. They'll keep doing that every night until we feel comfortable doing it ourselves. He is also going to be getting constant feeds through his NG tube at night, so they will show us how to work that pump, too. They brought out his home medications - all twelve of them. We will also need to monitor his blood pressure at home, so they've provided us with a cuff. Now all that's left is for me to get a stethoscope so that I can check the placement of the NG tube before I put anything in it. Oh, and there's also the weekly dressing changes for his central lines, which also need to be flushed and heplocked every other day.
Wow - I wasn't the least bit nervous until I wrote that last paragraph....
Anyway, we are going home. We have to come to clinic every day for the rest of this week, and I'm not sure about how often after that. Probably three times a week to start off with, and then it just depends on how well Jeremy is doing.
Grandma and Grandpa Winstead have internet access at their house, so I will still be updating the website pretty regularly to let everyone out there know how he's doing. Thank you all so much for all the support you have shown our family during this whole ordeal - keep praying for Jeremy in the coming months, as we are not out of the woods yet... but we can definately see the edge from here!
Love,
HOLLY

Sunday, October 24, 2004 8:58 PM CDT

Hello, everyone!
Jeremy is not doing as well as I hoped he would be by now. He is still in a lot of pain at times, and they've started giving him Morphine again to control it. They've completely stopped his feeds, and he is only receiving his meds by mouth now. He threw up quite a bit on Friday night, and has started having a little blood in his diapers again. This is probably due to GVHD, as the abdominal x-ray they did today looks better than the one they took last week (with regards to the pneumotosis). The doctors have increased the IV nutrition again, so that he will not lose any more weight. He is really cranky and irritable, and has cried more than he has slept in the past 48 hours, which is totally unlike him. He is teething, which probably accounts for some of his discomfort; however, I'm pretty sure that there's more to it than that.
He did nap occasionally this afternoon, but only for fifteen or twenty minutes at a time. He's been asleep for a little over thirty minutes now, which is the longest so far today (since 6:00 this morning, anyway). Hopefully, aided by the Morphine, he will sleep more peacefully tonight.
I will try to post again tomorrow.
Love,
Holly

Saturday, October 23, 2004 10:36 PM CDT

Jeremy has been doing pretty well the past couple of days. In fact, his WBC count is staying over 6, and he hasn't needed any blood products in almost two weeks. Yay, cells!! He has been pretty cranky today, but we think it's a combination of teething and gas pain. So we are treating it conservatively with Mylicon and Tylenol. Amazingly enough, they don't keep Orajel in stock here at Egleston, so I will be running out as soon as possible to pick some up. I think he will be much happier once this first tooth finally comes in.
Also, Ellen (the nurse practitioner) told us yesterday that she had written discharge papers for Monday, if his feedings went well over the weekend. Unfortunately, his feedings have NOT gone very well, but hopefully we will still be able to leave sometime this next week. We have officially been here for nine weeks now, and I have to say that I'm ready to leave.
I actually got about two days home this week, because I woke up Wednesday morning with a low-grade temp. Since any little thing (especially a virus) could be very dangerous for Jeremy right now, I made an appointment with my doctor right away. She prescribed antibiotics and said it was probably seasonal allergies and a sinus infection. Because this did not prove anything as far as viral/bacterial infections are concerned, Jeremy's doctors kicked me out for 48 hours (just in case it WAS viral). I missed my little man, but it was good to be home for so long.
Well, he's finally sleeping pretty soundly, so I think I'll go take advantage of it by sleeping myself.
Love,
Holly

Tuesday, October 19, 2004 4:06 PM CDT

Hi, everyone!
Well, Jembug has been sleeping most of the day today. He pulled his NG tube out last night, so they gave him Ativan and put another in. Then he pulled THAT one out sometime during the night, when he knew no one was looking. So they gave him more Ativan this morning, in order to put another one in.
I know that putting the tube in can be done without any sedation. I also know that many children do it without the help of medication all the time. But I also know that, even though it makes him lethargic for a good long time, Ativan helps Jeremy through that procedure without a lot of the trauma, fear and discomfort. I know that his doctors may question my insistence for this to be administered at least 30 minutes before the actual procedure, but I just feel like this should be as easy on him as possible. And quite frankly, if it's easier on him, it's easier on me as well. Without the Ativan, Jeremy chokes, gags, cries (actual tears), screams and turns his head from left to right to avoid the tube. With the Ativan, you can sit him in his high chair, turn on Baby Mozart, and he will allow them to insert the tube, responding only with a few sneezes once it's all over. So yes, I do request that they drug my child before this one thing. He's been through enough.
Sue me. :)
Jeremy regressed a little with his eating over the weekend. Between Sunday and Monday, he ate maybe five ounces. Things seem to be looking up today, however. They began cycling the hyperal and lipids, and he's had over four ouces since about 3:00, and it's only 5:30 now. He will now be completely disconnected from the IV pole from noon until six every afternoon. Which means that he will be hungry - REALLY hungry - between 5:30 and 6:00. So maybe we can get all of this straightened out in the next four or five days or so. I believe that this is the last obstacle to overcome before we can be released from the hospital.
We'll be making a mess with countless baby accessories over at Grandaddy and Grandma Winstead's house before they know it. :)
Originally, I thought we would have to live within 15 minutes of the hospital for 100 days after discharge. We recently found out that it's 100 days after the actual transplant, which happened on September 1st. So we are hopeful that Jeremy will be able to have his very first Christmas at home, with his very own (FAKE) tree, and a Winnie the Pooh stocking hanging from the mantle, just for him. I'm so excited.
Even after this is over, and we are at home, we will still have to be careful with him because of his compromised immune system. No large crowds, no indoor plants (fungus spores), no live pets (NO PROBLEM), etc. I would like to be able to take Jem to the mall to have his picture taken with Santa, but maybe we can talk his Pa into dressing up and coming over for that. Of course, considering all of the other children who have sat on his lap while he was wearing that costume, it'll have to be cleaned beforehand. But I have a sneaking suspicion that he'll be more than happy to help us with this.
I also would like to be able to have some professional pictures taken of him at some point, as we have not had these done since he was about seven weeks old. I'm afraid to take him to a public studio, because (again) of the immune situation. If any of our friends out there in cyberspace knows a professional photographer who makes house calls, let me know!!!!
Anyway, let me say one more time how much we appreciate the outpouring of love and support we have received during this ordeal, most of it from people we don't even know. As for the countless prayers that have gone to Heaven on Jeremy's behalf: Mere words could never sufficiently convey the gratitude we feel for those. God Bless you all.
I will write more later.
Love,
Holly

Sunday, October 17, 2004 12:48 AM CDT

Clinically speaking, Jeremy is doing very well today. He is eating. His WBC is over six. His platelet count has actually GONE UP without an infusion. His Hemoglobin is up. Jeremy's new bone marrow is starting to make his blood cells for him - and he couldn't be happier about it (and neither could we).
And while he has been happy most of the day today, he was crying in his sleep last night. I don't know what's going on with him when he does that. Maybe he's dreaming (Lord knows he has "scary dream material" now), or maybe he's in pain. If it's pain, is it "normal" pain (we think he may be teething) or is it abnormal pain stemming from some side effect of transplant? Does he need extra pain medication, or is the methadone enough? I feel as though I can never really tell...
Sometimes I think that this would be so much easier if he could only tell me what was wrong. Then again, that would mean he was old enough to actually remember all of this, and I certainly don't want that.
They will start tapering down the hyperal and lipids (IV nutrition) sometime this next week, to encourage Jeremy to eat more. He ate nine ounces yesterday; his nutritional requirement is at least 34 ounces per day. The most he has taken in one feeding is an ounce and a half. So, we're really going to have to work on stretching that little tummy so that it can hold more formula. Hopefully feeling hungry will help with that.
More later.
Holly

Saturday, October 16, 2004 1:15 PM CDT

Jeremy is having a GREAT day!
I went home last night, and Grandma Winstead stayed with him through the early evening, and then his Pa came and stayed the night. I finally got back to the hospital around 12:30 this afternoon, and Jembug was in a fabulous mood. He just laughed and played for almost two hours. He even took an ounce of formula, and held his own bottle!! He's teething now, and his gums (especially the top) are really swollen. And, of course, everything goes straight into his mouth (which just wrecks my nerves, with the whole immuno-compromised situation). But in the end, I'm just relieved to see him doing things that normal, healthy babies do.
His doctors here have been consulting with a GI specialist in Seattle about the air in his tummy, which they've pretty much decided is benign pneumotosis. He's back on the IV nutrtition for now, but can have formula whenever he wants some. He had not been offered any until I got here this afternoon, and I have never seen that child go after a bottle the way he did when he saw that one. His hands came out of his mouth, and he just about jumped out of my lap trying to get to his bottle. Then he took over an ounce without slowing down once.
He had also discovered "peek-a-boo" and his toes. The doctors seem pretty impressed with him playing peek-a-boo at this age - they've told me he's pretty young for it. But I swear he did it - the nurse was there and she can back me up on it. He pulls the blanket up over his face, then pulls it down. We say "Peek-a-boo!!!", he smiles, then pulls the blanket back over his face. He did that five or six times in a row, so I'm pretty sure he knows what he's doing.
Well, the nurse just came out and told me that he's awake, so I'm going in to check on him. We'll be here for eight weeks tomorrow - hopefully we'll be home before Halloween.
Holly

Thursday, October 14, 2004 7:51 AM CDT

Josh and I actually got a night out last night. The hospital social workers actually PAID for us to go to a motel near the hospital, and my mother stayed with the babe. I hope the night wasn't too hard on her; I know they had some pain issues during the night. We will address those more thoroughly when the doctors do rounds this morning. I got back to the hospital around 6:30 this morning, and we had pain issues again - it seems to come and go, and he draws up when it hits him, so it seems almost like some kind of stomach cramps. But judging by his screams, they must be really excruciating. Last night, they gave him Ativan when he was hurting - I am extremely upset about this because even one dose of Ativan knocks him out for days. I have requested repeatedly that they only administer Ativan when they need to place an NG tube, because it just makes it so much easier on him. Apparently, they haven't paid much attention to me. But I made SURE he received Morphine this morning, even though that meant calling his doctor at 7:30. I will be discussing this medication situation with them at great length when I actually see them during rounds this morning.
I have already reported the results of the endoscopy that was performed on Tuesday. We should be getting the pathology reports back from those biopsies today. They did take him downstairs yesterday for a repeat KUB (abdominal x-ray) and found that he still has air in his stomach. However, it is not actually inside his intestines as we originally thought. It is outside his intestines in his abdominal cavity. They are not sure why this is happening. He is scheduled for a CT scan for later this morning to see if we can determine the cause of this. And this is probably (along with the "tissue erosion" in his colon) what is causing him the pain he's in.
Well, I think I'll go downstairs and get some breakfast. I will hopefully have the chance to update once he gets back from his procedure; if not, you will surely read more tomorrow.
Holly

Tuesday, October 12, 2004 9:44 PM CDT

Although the baby's disposition has improved somewhat over the course of the day, his eating habits have not.
Unfortunately, I cannot say the same for my own. :) I went to the grocery store and bought the fixins' to make all of my fellow cancer moms peanut butter chocolate milkshakes. And I have to say that they turned out pretty darn good.
I was disappointed that I was unable to attend my first monthly Camp Sunshine Relaxation evening. Apparently, once a month, the people at the Camp Sunshine House pick parents up at the hospital to take them to the center for a night off. Last night, there were Wolfgang Puck Express snacks, as well as chair, table and reflexology massages. Admittedly I was looking forward to it very much, and registered for it as soon as I heard. However, I did not have any luck in finding a babysitter for the wee one during that time, so I had to miss out on it. That's okay, though: I probably wouldn't have known what to do with myself afterwards anyway, except for go straight to bed. Which here is never an option.
So instead I stayed up most of the night, being both excited about the results we had yesterday and nervous about what we might find out after the endoscopy today. Jeremy finally went to surgery around four o'clock this afternoon, and was back before 6:30. Everything went well during the procedure, as well as afterwards. They did, however, have abnormal findings. He has a spot of concern in the area between the bottom of his stomach and the beginning of his intestines. The major concern at this point, however, concerns his poor little colon. It is very enlarged and enflamed, and has evidence of infection. While there are lots of things that COULD cause this, our first worry, of course, is GVHD. Since he is already being treated with steroids on such a regular basis because of the skin problems he's been having, I am not sure what our other treatment options we have for this. Hopefully I will learn more when I speak with the doctors in the morning.
More Then.
Holly

Monday, October 11, 2004 2:44 PM CDT

Today has been the best day we've had yet.
This morning I met Dr. Chiang in the hallway, and asked once again about the results of the Chimerism test. Because it was performed almost two weeks ago, we believed it should be back by now. Dr. Chiang had not received the fax; however, he said that he would call them personally and find out.
I went back into Jeremy's room to finish watching his movie with him. This morning was no different for him than the past few days: he was still pretty lethargic all morning. About ten minutes later, Dr. Chiang came into the room, and said, "I have the results of the Chimerism test, and he is 100% donor cells."
You could've knocked me over with a feather. We have heard, especially with a cord blood transplant, that the engraftment process is pretty slow - receiving a 60% engraftment result is pretty normal for a Chimerism test performed on Day +30. Not only is Jeremy's result 100%, but his test was actually performed on Day +27, instead of Day +30. So this means that he has done remarkably well: the doctors and nurses seem astounded at the results of his test.
What this means is basically this: Jeremy no longer has HLH. Because it was faulty bone marrow causing the disease, and he no longer has faulty bone marrow, he is CURED from this horrible disease. We still have a long way to go with the BMT process, and he will still have to be on a lot of medications. There are still risks for infection, because his bone marrow is brand-new, almost like an unborn child's marrow. But the important thing is that now he is hemophagocytic lymphohistiocytosis free.
I think I cried for about an hour and a half after Dr. C told me (which I'm pretty sure made him a little uncomfortable). What's funny, though, is that Jeremy's entire disposition completely changed when the doctor gave us the good news. Suddenly, he was back to smiling and laughing, flirting and cooing. He finished his movie and then played in his excersaucer for about half an hour. They came in to pre-dose him with phenergan because we had just given him about five different drugs through his tube, and then he proceeded to eat almost an ounce and a half once the phenergan kicked in, and fell soundly asleep. It's almost like he KNEW - like he was anticipating the results, like he was as nervous about it as we were. And then once he got the report, he could relax and become his happy old self again.
On the downside: Even though he IS taking a little more by mouth, and not throwing up quite as much, they are still concerned about his general lack of interest in the bottle. He has had nothing as far as nutrtition (with the exception of IV saline) for over a week, and yet he will still not eat more than a few ounces a day. So they have consulted a pediatric GI doctor, and Jeremy will be going to surgery tomorrow to have an endoscopy, as well as a biopsy of the gut to test for GVHD. Pray that this test will come back okay, and that he will start eating again on his own now that he has started to come back around.
More later.
Love,
Holly

Monday, October 11, 2004 8:26 AM CDT

Well, Jeremy is still pretty out of it. He sleeps most of the time now, and when he does actually wake up, he's pretty unresponsive and lethargic. They still think it may be the Ativan, but I have to admit that I have started to become a little worried. It's just not like him not to smile first thing, or want to play at all. His eating has not really improved, and he's lost about a pound in the last four days or so. All of his meds are still being administered through the NG tube, so at least there's that. His Cyclosporin levels were perfect yesterday, which is good. His WBC count continues to fluctuate up and down, and I don't think we can let ourselves be too excited next time it makes a signifigant jump. He will need platelets today, and probably blood tomorrow.
Holly

Saturday, October 9, 2004 10:08 PM CDT

Well, Jeremy has not been having a very easy time the past couple of days.
His nausea has become very severe, and we are having major feeding issues. He is back on the IV fluids (not nutrition; just normal saline) to keep him hydrated until he starts eating enough to give himself proper nutrition. Last night, he was in a tremendous amount of pain and very lethargic. A tech came to the room to do a portable abdominal x-ray, and everything looked normal: there are no blockages or anything like that. But his little intestines are absolutely FILLED with air, which is probably causing him to have sluggish bowel issues, as well as cramping gas pains. His stomach continues to work at recovering its former capacity, and meanwhile he throws up most of what he eats. We got really excited earlier this evening because he ate a whole three ounces, but then after he woke up from his nap, he threw up what seemed to be everything he'd taken in. They are giving him Phenergan for nausea now, which does make him drowsy - but at least he is able to get some rest.
Josh and I are almost at our wits' ends. Unfortunately, we pretty much stay at each other's throats about sixteen hours out of every 24 - but we're sure (especially me, since I'm usually the one who starts it) to apologize and make up on a regular basis. The stress of this whole thing has really started to wear us down, but we know that this will be over soon, and we just have to ride it out.
Despite all of the negative things I've reported so far in this entry, there is some good news: Jembug's White Blood Cell count is 6600 today. This increase is all his own system: there's no reason to attribute it to high bolus steroid doses or anything this time. We are finally able to take the number at face value and simply rejoice in his progress.
We still haven't heard anything about the Chimerism test yet (the percentage of donor vs host cells post-transplant). The labwork is sent to some sort of biochem lab, and we should receive the fax sometime at the beginning of the week. Dr. Haight told me yesterday that I should not be worried at all about the results; she feels absolutely sure that they will be nothing but positive.
Well, Josh just got back with our nutritious dinner, consisting of warmed-over QuikTrip taquitos (mmmm..... spicy pureed chicken tubes) and cokes (in the can, of course). So I will end this entry now so that we can enjoy our romantic meal, in the low-lit atmosphere of the cancer ward hallway, while it's still somewhat lukewarm.
More later.
Holly

Sunday, October 3, 2004 8:41 PM CDT

Well, today has been a pretty great day, for the most part. Josh came here after work last night and I got to go home for the WHOLE night. Unfortunately, I was supposed to be back here at 8:30 this morning so that he could go to work, but my alarm clock didn't go off (or else I just didn't hear it), so I didn't even leave our house until 8:27. Luckily, being the kind of driver I am, I managed to still get to the hospital at around twenty after nine.
Then Dr. Haight came and met me in the hallway to tell me that she thought it was really time to place another NG tube. For those of you who don't know what this is, here goes: A Naso-Gastric tube is a hose which goes up through the nostril and down the throat and esophagus into the stomach. I did not want this when they mentioned it on Friday, just because our last experience with this was so terrible. Jeremy would just keep pulling it out, then they would just have to keep putting it back in. And every time he would fight, choke, gag, and scream the whole time. So naturally, I was against this in the beginning.
When Dr. Ann told me that it was her suggestion we just go ahead with it, I agreed on the condition that he be mildly sedated beforehand. I told her that I had no problem with an NG tube: If she could make it magically appear and guarantee it would stay there until they were READY to take it out, that would be just fine with me. So she agreed to the Ativan, and it worked like a total charm. They administered it about 30 minutes before placing the tube, and the entire time they were doing it, he just reclined back in his high chair and watched Baby Mozart. No gagging, no choking, not even one little whimper. They only reaction he had was a couple of sneezes after it was placed. Thank goodness.
And it turns out that the tube has been wonderful. Not only does it mean that all of Jeremy's oral medications can be delivered through it, therefore saving him the horrible tastes. But he can also still eat from a bottle with it in, which he has done today. And today he has taken in more than 170 cc's (almost 6 ounces). I think the total record before today was around 60 cc's. So we are totally thrilled about that.
His WBC count is about 3800, which they say is fantastic, considering a cord blood transplant tends to take a little longer than a bone marrow transplant. Yesterday his count was over 8,000. Yes, this sounds like a lot. But it was only high due to the high bolus steroids he received on Thursday. Those boost your WBC count. But don't despair: this is actually GOOD news. You see, those steroids would not have caused that much of a boost unless he had a really strong bone marrow. Which means his bone marrow is doing well. And that is just fantastic.
Additionally, he did not need platelets yesterday. However, he did need them this morning. But I believe that this is definately moving us towards the every-other-day trend we're looking for.
All of these things together mean one thing: we are going to be going home very soon. Possibly even the beginning of the week. If those platelets keep doing this well, and if his eating continues to increase at this rate, we are definately homeward bound. So say your prayers and keep your fingers crossed: I don't think it's gonna be that much longer, now.
Love,
Holly

Friday, October 1, 2004 3:16 PM CDT

Greetings from the Egg.
Our boy isn't feeling so good today. He got up around eight o'clock this morning, and has pretty much cried/whined ever since. It is now 4:30 in the afternoon. Because he is usually so happy and laid back, this is very hard to adjust to. The doctors think it is either: a)the mega steroid doses he received yesterday, or b)withdrawal from Morphine. He has to have the steroids for GVHD, so there's not much to be done about that. However, they have increased his Methadone dose and are giving him Morphine boosters in the hope that this will help with his unhappiness. It is obvious to me that he just doesn't feel good. And while I really want him off of these narcotics, I want him to feel better more.
Home healthcare came today (no, we're not going home yet). We are having trouble keeping Jeremy's blood pressure at an acceptably low level. They came by today to deliver the blood pressure monitor that we will have to take home with us, and to teach me how to use it. Once we go home, I will have to take his blood pressure every four hours (just like at the hospital) so that I can give him his hypertension medicine should he need it. They still think that this is because of the cyclosporine, but mentioned today that it could also be caused by morphine withdrawal AND steroids. Seeing as how all three of these things are happening to him right now, it's no surprise that his BP's are running so high. Our next step is to try to find a medication that will be more effective in controlling it. So far we have tried three different kinds. Maybe the newest one will really work the way it's supposed to.
I have no idea what Jeremy's WBC count is today. Every time the doctor has come to his room, he's been in the middle of a short little catnap, so they haven't really examined him yet. NOBODY wants to wake him up in his current mood. Not even them.
The good news for the day is that he is eating much better than he did yesterday. He has already had almost three and a half whole ounces of formula, and it's not even five o'clock in the afternoon yet. He is completely disconnected from the IV nutrition from 10 a.m. until 6 p.m. every day now. Plus, the steroids are an appetite stimulant. So he's a little hungrier today than he has been, which is really good.
Well, that's about it for now. Thank you again for all of your support and prayers. Even though he is better than he was two weeks ago, we've still got a long way to go.
Holly

Thursday, September 30, 2004 6:35 PM CDT

Thank you all for the wonderful response we've had regarding platelet donation! I don't think Jeremy will ever have to go without them again, thank goodness.
I know it's been a few days since I posted an entry, but there really hasn't been much to report. Jeremy has not made much progress in the WBC department, so they've started him on the GCSF shots again, hoping to stimulate some WBC production.
His eating has gotten worse instead of better, but I am pretty sure that this is because they've switched most of his meds to oral. He becomes very worried if he sees anything besides his own hands come towards his mouth. And seeing as how everything they give him tastes absolutely terrible (and I should know, since I taste it first), I don't blame him in the slightest. I mentioned today that I think we were a little bit hasty with the oral meds. I told the doctor that he doesn't even really like what he's supposed to like yet, and now we're forcing things on him that he's definately NEVER going to like, and I think it's just making him reluctant to have anybody put anything in his mouth.
However, I don't think my obvious expertise left much of an impression on them. (HAHA)
I have made a lot of friends since coming here, and for that I am glad. I wish I didn't have to be here, and I wish nobody else had to be here, either. I wish this place didn't even have to exist. But it does, and I'm here, and so are they. And hey, even quicksand is common ground if you're searching for stable footing with someone else. And I suppose there's something vaguely comforting about that, anyway.
More later, I promise.
Holly

Monday, September 27, 2004 1:55 PM CDT

Jeremy is still doing okay today. His WBC count has fallen some more (a normal reaction after stopping the GCSF shots), as has his ANC.
The real emergency for the day is that Jeremy, along with other children on this floor, are not going to be getting the platelets that they so desperately need. Jeremy's platelet count was 23,000 this morning at 4 a.m. (normal is 150,000 - 400,000), so we know that he will need some at four this afternoon. Unfortunately, there are none here for him to get. I have been told that they will have to ship some from out of state, and the Lord only knows when they'll get here for him.
I have filled out the direct donor paperwork and it is on the way now to the Red Cross. We have been discouraged in the past from doing this, and have been misinformed many times regarding certain aspects of direct donation. However, we have spoken with Red Cross this morning, and have been put straight as far as direct donation is concerned.
Blood/platelets that are directly donated have to go through the same rigorous testing as all the other donated blood products, as the Red Cross is also subject to FDA regulations. The people at Red Cross were very upset to learn that we have been discouraged in the past from doing this, because all donations, regardless of the source, are needed.
While there does not need to be a blood type match with platelets, there are other things that do need to be matched. I am not sure what those things are. They will do a type cross and match here at the hospital before giving anything to Jeremy. If you would like to give directly to Jeremy, please email me with your name and I will be happy to call Red Cross and add you to the list. Please understand, however, that this is no indication that Jeremy will get your donation. If it is discovered through the testing that you are not a match for him, your platelets will go into the general pool for other patients. There is just no way to tell whether you match or not until you go and give.
Anyway, the paperwork should be entered into the system at Red Cross sometime this afternoon, and people will be able to start giving for Jeremy as early as tomorrow. For right now, only immediate family members are on his list, because I had to get the paperwork to them ASAP. Any platelets donated tomorrow for Jeremy will be able to get to him as early as Thursday. Please email me your names, so that I can call and add you to his list as soon as possible. Keep in mind that it takes between 1 1/2 to 3 1/2 hours to donate platelets. Also, you can donate platelets every 72 hours, so we should be able to get a pretty good flow going for him.
My email address is jembugsmom@yahoo.com. Please email me to let me know if you're interested, and I will email you back after I've called Red Cross with your name. This will probably only happen once a day, as I am very busy up here with the baby and cannot check my email/make phone calls as frequently as I'd like. You can also email my mother with this information, and she can call. Her email address is carolynp@uga.edu. Please email only one of us, as we don't want to get confused about who we've added and who we haven't.
Thank you all so much for your concern and support. All donation offers will be greatly appreciated!! We've been told that he will need platelets for the next couple of months at the very least, and platelets don't last forever. So your continued donation is much needed, and we will be forever grateful.
Love,
Holly, Josh and Jeremy

Sunday, September 26, 2004 2:39 AM CDT

Hi, everyone. It is about a quarter til four in the morning, and I just cannot sleep. My mind is just reeling from everything that's happened over the last four months or so, and I am doomed to be awake for the time being.
I have struggled as to whether or not I should put this in Jeremy's journal, and finally decided that I had no choice. Although I have not received express permission from Josh, I feel as though I must share it with everyone. Josh is a member of an on-line diary, and this is the entry he wrote the night before Jeremy's transplant. I've edited it a little bit here and took out the paragraph that directly related to the readers of his diary. He put into words the heartache, the fear, and the hope that we have been feeling throughout this ordeal. He has been a pillar of strength for Jem and I since this all started back in May. He remained calm for me and the babe while watching our world fall to pieces, and me along with it. He is the kindest, most empathic, most wonderful man I have ever met. When I read this, I wept.
Josh:
I consider our first meeting one of the luckiest moments of my life. You're perfect for me, and perfect for Jeremy, and perfect for this hand we've been dealt as a family. We both love you so much, sweetheart.


SUPERHERO.

As I type this, I am sitting at a courtesy computer in the hallway of a cancer ward on the third floor of a children's hospital. I am just outside my son's room, inside of which he sleeps peacefully, aided by the somnolent drift of Atavan and Morphine and Benadryl through his bloodstream. It has been a long three months that has brought us here, to this night in this place. The clock at the bottom right hand of the computer screen says it's one a.m., which means today's the day; in approximately ten hours, a nurse will start a blood transfusion which will determine the course of the rest of our lives.

The story in its entirety is a long one, and I have been fighting to tell it for many weeks. In fact, I don't know that I've ever struggled with writing like the telling of this tale has brought, and the fight still isn't over. Then again, nothing this important has ever happened to me. It becomes incredibly difficult, I've found, to shape the words that will convey how your entire life has changed in a few short moments, and you can spend innumerable sleepless nights examining and reexamining the details that surround those few moments, turning them over and over in your hands, trying to make sense of it, to find a pattern, some semblance of math or reason that would seem to add up to what has happened, who you've become, how the world looks and feels to you now, from this new perspective, through these new eyes. But it can't be done, of course. It's like taking a single piece from a thousand different puzzles and then trying to fit them all together to make an image you've picked at random from volume Nam-thru-Op of the encyclopedia. Even if you could manage to force the pieces together, maybe snipping off a tab with scissors here or there, you still can't fashion a picture that makes any sense.

I've written many pages about the events of the last three months of my family's lives, none of which fit together particularly well, and none of which can explain what has happened. At some point I may manage to assemble these bits and pieces into a moderately coherent whole, perhaps even for the pages of this very journal, but until then, this thumbnail sketch will have to suffice. The short of it is that my wife and I took our son to the hospital the weekend of Memorial Day with a persistent high fever. Less than a week later, his abnormal test results led doctors to their diagnosis of a rare blood disorder called Hemophagocytic Lymphohistiocytosis. The disease isn't classified as a cancer, but it essentially behaves the same way as cancer and so it is approached using similar courses of treatment. Our little Jeremy has handled it all like the brilliant, ebullient, tireless star that he is, with smiles and laughter in the face of so much ugliness and suffering. Through eight weeks of the initial chemotherapy, his mood and character were so bright and delighted that you could never have guessed how sick he was if it hadn't been for the thin rubber IV line that sprouted from a tiny hole in his chest to poke out between the snaps in his onesies, or the steadily receding hairline that eventually left him bald as a cueball for the first time since he was born, or the way his diapers would smell the first few days after a treatment (most chemotherapy is processed by the kidneys and leaves the patient's urine smelling strongly chemical, not unlike something burning on the eye of the stove). His remarkably constant good humor has made this ordeal infinitely easier for his mother and I to shoulder.

Still, it has taken its toll, on all of us. The past two weeks have been the toughest thus far, comprising the most intensely concentrated barrage of chemicals to his system, and it's finally begun to show in more upsetting ways. His appetite has completely dried up, leaving him to receive all of his nutrition through the IV now, and when he vomits (which happens at least four times daily, regardless of round-the-clock nausea medication), it is only a slick translucent green bile, just like the awful stuff we find in his diapers. His skin is dotted with hives, and mucositis lines his throat and the inside of his mouth with sores, making even thumb-sucking too painful to endure. There are headaches, chills and fever. He cries often now, whereas he so rarely did before, and the cry is pronouncedly different from the moderate urging tone to which we'd grown accustomed, sounding so mournful as to require enormous patience and courage from Holly and I to keep from bursting into uncontrolled sobs at the sound of it. The smiles and laughter from our happy boy are much fewer and farther between these past few days, and it is to us as if the sun has suddenly disappeared from the sky. And yet, we know the worst is far from over. All this recent hammering down of his immune system has been leading up to today - at 11 a.m. he will receive a bone marrow transplant that will hopefully negate the disease entirely and leave the three of us to lead relatively normal lives from this point forward. Whatever normal is anymore. I'm fairly sure I never knew in the first place.



Jeremy was 25 weeks old yesterday; he has spent more than half his life with radioactive chemicals coursing through his veins. I keep telling Holly to try not to worry too much. I tell her that this is always how superheroes are born.

********************************************************************************

As footnote: I can't sleep tonight. The strain and stress of the coming transplant have rendered my mind's shutters useless, and they've been stuck wide open for the last three days or so. Last night I cleaned our house (which is an empty, lonely place since Holly and Jeremy took up residence here at the hospital again) within an inch of its life. Tonight I wandered the vacant hallways of the hospital, eventually making my way down to the ground floor, where there is a bay of vending machines filled with all manner of bad food. I walked over to the only Coke machine I've found in the entire hospital that dispenses cans rather than those plastic bottles (Holly thinks I'm completely mental, but I swear the soda tastes different from one container versus the other, and I much prefer the cans), deposited 65 cents, and pressed the button for regular Coca-Cola. There was a huge CRASH! from inside the machine, and I watched in amazement as the issuing chute at the bottom of the machine filled with cans. For my 65 cents, I was dispensed nine ice cold Cokes.

It may seem silly, but I believe that providence can announce itself in silly ways sometimes. It was just after midnight when I pushed that button. I feel lucky today.





--------------------------------------------------------------------------------

Saturday, September 25, 2004 4:31 PM CDT

Hello!
Well, things seem to be going exactly where they should be going. Jem's White Blood Cell count is 5,000 this morning. I asked Dr. Meeks what normal was, and apparently I had been misinformed before, because she said that normal was 5,000-15,000. So we are on the low end of normal as of today! His ANC was 3,500 today (up from 1,999 yesterday) and the normal range on that is 2,000-? (not sure what the upper figure is). But at least we have finally achieved normal levels as far as his immune system is concerned. They stopped the GCSF (WBC stimulator) and his last antibiotic today, and they also discontinued the PCA pump. He can still get injections of Morphine should he need them, but for now we are relying on the Methadone every six hours for pain. Now, if we can only start working on those red blood cells and platelets, maybe we'd be able to go home pretty soon.
His eating is much better than it has been, and he actually sat up for a couple of seconds on his own today. They are really going to start tapering down the IV nutrition, and gradually increase the amount of formula he can have at one time. We don't want to put too much on his stomach at once, but we want him to be hungry enough to take the limit they've set.
They finally got the cyclosporin level back, and it was a tiny bit high. This is probably the cause of his high blood pressure. This is good news. Sometimes a BMT can be especially hard on the kidneys, which can cause hypertension that lasts longer and requires round-the-clock treatment. His blood pressure, however, is not elevated every time they take it, and they only treat it with medicine when it is high.
Anyway, he's been asleep for about 2 1/2 hours now, so I better go check and make sure he's still sleeping.
I will post more tomorrow.
-Holly

Friday, September 24, 2004 9:59 PM CDT

It's a little after 11 p.m. on Friday night here at The Egg (as it is affectionately known by all who come here on a regular basis).
Jeremy is doing well with his decreased pain meds, and seems to be tolerating eating better. He ate almost an ounce on THREE separate occasions today, but it is still watered down (two parts water to one part formula). I think tomorrow we'll start trying to mix it half and half, and see if he tolerates it as well at that strength.
They had to start him on a medication for high blood pressure today. It seems that his Cyclosporin (an anti-rejection drug) can cause hypertension. And since GVHD (graft versus host disease) is a big risk right now, they've had to increase his cyclosporin. However, they do have to be very careful with the levels - too little and it does no good; too much can be toxic and cause tremors or siezures. They are drawing levels for it every morning, as he gets a constant infusion of it 24 hours a day.
I did find out today that we are not going to be able to have direct donors for Jeremy for blood and platelets. A nurse told us today that Red Cross doesn't screen direct donor blood products as thoroughly as they screen the general pool products, because they assume you are having direct donors for a reason. Because of this, and because of Jeremy's compromised immune system, we are not going to be able to have designated donors for him. We, too, will have to rely on the kindness of strangers to provide him with his much-needed blood products. Unfortunately, last night, he was not able to get the platelets he needed when he needed them, as there were none available in the lab here at the hospital. They had to wait until almost 5:00 this morning, for Red Cross to bring some. The shortage right now (especially for platelets) is great, and there just aren't enough to go around at this time. So please, I urge everyone out there again, if you have the time, please go and donate platelets. It is time consuming, but some Red Cross locations have extended hours (til 8 p.m.) and most are open on Saturdays.
Anyway, the good news:
His WBC count today was 3,500. His ANC (that's a measure of segs and bands - also an immune system factor) was 1,999. Normal ANC is 2,000. So things are really, REALLY starting to look up as far as him getting an immune system back are concerned. Now if he can just start making RBC and Platelets, we'll be doing good. They will probably let him go home once he doesn't need platelets every single day. They would like for him to only need them every other day before we go home. Right now, he still needs them twice a day, but maybe it won't be too long before he is not so dependent on blood products.
Well, I better go in there and go to sleep. Now that he's started eating again, I kind of hope he's really crying for a bottle in the morning. Part of me would be really happy to hear him fuss for food right now.
Love,
Holly

Thursday, September 23, 2004 6:42 PM CDT

I now have the paperwork for the doctors to fill out so that platelets and blood can be donated by friends and relatives especially for our baby boy!
I will try my best to get this to Red Cross as soon as possible. Once they have put it into the computer, all of you prospective donors out there can go and do it just for him. I think that the only thing you'll need to do when you get to your local Red Cross is give them his name and tell them he's at Childrens Healthcare of Atlanta @ Egleston. Then, after the blood products have gone through all of the proper channels (which usually takes about 7-10 days), they will send it to the lab here to be earmarked for Jembug. Don't worry that it may be too late for you to do this for him, because they've assured us that he will be needing blood transfusions and platelets for quite some time (at least a couple of months, I think). I also found out today that a person can donate platelets every 2 weeks, and blood every 56 days. I will let everyone know through this journal when I actually get all the paperwork settled.
Anyway, the baby's WBC count jumped from 1.7 (that's 1700) to over 2.8 (2800) today! We've been pretty much back and forth for the last week or so, but this is definate progress. Also, since they've started giving him platelets every twelve hours, his general appearance has really improved. He also got another blood transfusion today. He seems pretty happy in general, though. And he ate today for the speech therapist (and to show off for his Ma and Pa) - only about 20 cc's, but that's about the limit of what his doctors want him to have at one time right now.
They tried to get him off of the morphine last night, but it didn't go well. They gave him a dose of methadone around midnight last night, and turned the morphine pump off completely. Unfortunately, he started crying in his sleep (something that I absolutely cannot stand) around four this morning. The nurse came and gave him an injection of morphine into his line around 4:30, but instead of quieting him, his crying only became more pitiful and persistent. Finally, around a quarter after five, the nurse called the doctors and his morphine pump was restarted with a constant basal rate, and the button every six minutes should he need it. They are still giving him methadone every six hours, and tonight they will stop the constant basal rate of the morphine pump, but leave the button. The button delivers more morphine with one push than he was getting in a whole hour with the constant drip. Combined with the methadone, we are hopeful that this will be enough to control his pain. They seem to think that he is still having pain from the mucositis. While it has cleared up in his upper GI tract, we have no idea what might be going on in his lower GI, so he could still have sores from his intestines down.
All in all, any day with no fevers, no rash, and an improvement in WBC is pretty good around here. I am tired, but trying to stay positive about everything, and Jeremy is just a perfect little angel. We will post again tomorrow - hopefully with even better news than today!
-Holly

Thursday, September 23, 2004 0:50 AM CDT

Hi, everyone!
Well, it's about 2 a.m. and I am still up. Unfortunately, I decided to take a nap when Jeremy did this afternoon. I woke up around eight o'clock, and Jeremy was already awake, just laying there, sucking on his hands and staring at the ceiling. I have no idea how long he'd been awake. He does that all the time. I feel really guilty when I realize he's been waiting for me to come and get him, but he doesn't ever make any noise, so what can I do? He's happy just to wait, I guess. Maybe when he starts eating again and actually feels hungry, he'll start fussing for me to get him, and we can actually wake up at the same time.
Jeremy's platelets were >10,000 when they drew them again last night, so he had to get platelets. Then, when they drew his standard bloodwork this morning, they were >10,000 again so he had to get more. The doctors then decided that he will need to receive platelets every twelve hours for the time being, as they are falling at such a fast pace. Many of you have asked about donating platelets and blood especially for Jeremy. I do appreciate this very thoughtful gesture. However, when I have asked the nurses about doing this, they sort of frown on it. The general consensus on the floor here is that if someone can do it, they should just do it. And after being here, and seeing all these other very, VERY sick children, I guess I agree with them. If everyone would give platelets, not only would there be plenty of them for our little Jeremy (as platelets are not reliant on a blood type match), but enough to help all these other kids as well. While it is a fairly lengthy and involved process (it takes 1 1/2 - 3 1/2 hours, and you may have to get stuck twice), it is well worth it, and if I can get away, I plan on doing it myself this week sometime. And even I am not going to make sure they go specifically to Jeremy. I just want for there to be a surplus in the bank, so that nobody gets turned away if they need some, which happens more frequently to some of these kids than I like to think about. Here's an excerpt from the American Red Cross homepage:

The need for blood is constant. We need your help and the help of thousands of blood and platelet donors. If all eligible donors gave blood at least twice each year there would be no seasonal blood shortages. Please remember to donate blood and platelets. For more information regarding blood and platelet donation in your community call 1-800-GIVE-LIFE (448-3543).

I am really not trying to be unappreciative of all of the wonderful offers that many of you have made on Jeremy's behalf. I am truly grateful for your kindness and generosity. However, I just want everyone to know that it is not really necessary to go through the paperwork and red tape that's required in order to do this. If you donate, he and countless other children will benefit from it. And that is what's important.
Well, I better go check on my laundry so that maybe I can go to bed soon. I will update more tomorrow.
Love,
Holly

Tuesday, September 21, 2004 3:50 PM CDT

Jeremy is doing okay today.
His WBC count fell again today, back down to 1300.
His platelets were 22,000 this morning, but they are going to test them again this evening because he will probably need platelets by then. This was my request, as I do not like the way he looks if his platelets get too low. Platelets are what cause your blood to actually clot (in addition to countless other things). Therefore, when they get too low, it results in easy bruising, and little purple spots (called petechiae) from head to toe. Basically, his diapers are bruising the insides of his legs, and every time he rubs his eyes, it looks like he has just been punched in both of them. Even though it's perfectly normal at this point in the transplant, it still makes his mother very upset to see him that way.
His hemoglobin fell almost 3 points since yesterday, so he did need blood today. Dr. Chiang said that he could not explain this drop in his hemoglobin, but that he's not worried. If it continues to drop at this rate, we will have to look more closely at what could be causing it. He's not having any obvious bleeding, though. The doctors have assured me that they will let me know when there is something to be worried about, so I am trying to keep that in mind.
Otherwise, he seems okay. Since they went back up on the Morphine pump yesterday, he seems much more comfortable. They are talking about switching him to Methadone, as it is effective longer than Morphine is. I actually got him to eat about 1/2 an ounce today, by sneaking the bottle into his mouth as he was sucking on his fingers. He also tolerates it better if you dilute it with water. It is slow going, but this is definately progress (the nurses were impressed, anyway).
I do not think we will be going to Grandma and Granddaddy Winstead's house anytime soon, though. He still needs platelets every day, and they say they'd like for him to only need them every other day before we go home. Also, he needs to be eating a good bit more than half an ounce before leaving the hospital. So, I'm afraid we're still looking at another couple of weeks.
They will do the chimerism test on Day +30 - ten days from now. This is the test that determines how much of his marrow is donor and how much is still his (or what percentage he's engrafted). From what I understand, it takes about two weeks to get the results back from this test, so it will still be awhile before we REALLY know how far we've come with this, and how much farther we still have to go.
Goodbye for now. I will post more soon.
Holly

Monday, September 20, 2004 3:32 PM CDT

All in all, today has been a pretty good day. They had to go back up on Jeremy's morphine again, because he has been uncomfortable in the stomach area all day long. He cries if you even press on it too much. This could be caused by many things, and the doctors seem to expect it to be going on right now. He is on isolation (doctors and nurses are required to wear gowns, gloves, masks, etc., when they come into the room) so even though we greatly appreciate all the visitors, now is probably not a good time for anyone to come. Just because we can't really have anyone extra in the room, and I really can't get away unless he is asleep. Hopefully he will be taken off the isolation when they get results back from some tests they've done.
Anyway, his WBC count is up to 1500 today, so that is really good. He is getting platelets again today (I think this is the fourth day in a row). I was concerned about it, but his nurse, Jennifer, told me that sometimes they have to give a patient platelets two or three times in ONE day during a bone marrow transplant. We have asked about having platelets "reserved" for Jeremy, but I think that people will just have to ask their local Red Cross about doing that. I know that it can be done with regular blood (you just tell them where he is, I think) but I am not so sure how you would go about doing this with platelets. The number to call is 1-800-GIVE-LIFE (448-3543). You could also visit http://www.redcrossatlanta.org/giveblood/index.html
to find donation centers in the metro Atlanta area, or go to www.givelife.org to make an appointment.
Anyway, I guess I better go back in and check on him, as he has not had a very good day so far. Thank you again for all of the love, support, and prayers that have been given for him.
Love,
Holly

Sunday, September 19, 2004 2:39 PM CDT

Hi, everybody!
Well, not much has changed around here in the last few days. Jeremy is still not eating, but the speech therapist is going to continue working with him. His WBC count has fallen to 1300, but nobody seems worried about it. He still needs platelets pretty much every day, and transfusions about every three or four days or so. One of the doctors mentioned something about a slight platelet shortage (yikes!) due to the hurricanes coming through Florida, so I am going to see if I can go donate some sometime this week if I can get someone to sit with the baby. If anyone else has time to do this, please do! If you donate platelets, they will also put you on the national bone marrow registry for free.
I would like to ask the readers of this journal for a favor - Please add a little boy named Reese Valderaz to your prayer lists if you can. He is 20 days old today, and has been here since he was born. He is currently down on the second floor in the cardiac intensive care unit. He was born with a heart defect (something about the left ventricle not working the way it should) and had open heart surgery when he was three days old. Although the surgery has a 95uccess rate, he fell into the other 5nd had a heart attack on the operating table. He is now on life support and is at the top of the list for a heart transplant. However, he cannot stay on life support forever, and he and his family are quickly running out of time. I see his mother often and she has been here since getting out of the hospital, and is still recovering from a C-section. My heart breaks for this family, and I just wanted to ask Jeremy's prayer team to add this baby to their lists. Thank you so much.
Well, I should get back in there with Jembug, and wait for him to wake up. I will post again tomorrow, hopefully.
Love,
Holly

Thursday, September 16, 2004 5:11 PM CDT

Hi, Everyone!
Jeremy is doing really well today. He's been happy, alert, and playful almost all day long. His WBC count hasn't gone up since yesterday, but the M.D.'s are not concerned about that, since it hasn't gone DOWN, either. His liver function tests are better today than they were yesterday, and his red blood cell count is actually up. His platelet count, however, has dropped again to 21 thousand, so he will probably need to receive platelets tomorrow.
He is still on the morphine pump, but they have been reducing the continuous dose every day since Tuesday (he can still get a bolus of it, if he needs it, every ten minutes). We hope to have him completely weaned off of it by the end of the weekend. He is now only taking ONE antibiotic, which they've decided to leave him on because of the lack of improvement in his WBC count. We actually tried today to give him his anti-viral medication by mouth (which did not go well at all), but after speaking with the speech therapist, he is going back on the IV meds for now.
He has not eaten anything at all in almost three weeks now, and has pretty much gotten out of the habit of having anything of substance (aside from his thumb, of course) in his mouth. I am afraid we are going to really have to work with him on this, as he has almost lost the instinct to really suck for anything aside from comfort. His body has not really needed to get anything for nutrition because of the hyperalimentation and lipids, so he's gotten to be, shall we say, a LITTLE bit lazy about the whole thing. Some of the meds he's on can really alter the way that food tastes, and he may be a little turned off from actually swallowing after all the nausea and mucositis. We are stopping the by mouth meds because they don't taste very good and we don't want to turn him against having liquid in his mouth.
We are just going to have to devote a little time and effort to get him back into the swing of things. But I have been assured that when he's hungry enough, he'll eat.
Anyway, if things continue to improve at the current rate, the doctors say we might be out of the hospital as early as the middle/end of next week! Keep praying that little Jembug gets the hang of this eating thing, and that those white cells just keep getting greater and greater in number!
Love,
Holly

Wednesday, September 15, 2004 9:14 AM CDT

Jeremy's WBC continues to go up. Yesterday, it had jumped to 1600, and today, it is just over 2000. Maybe not the dramatic increase from the first couple of days, but any increase at all is great!
He was up from 7:00 last night until about 3:30 this morning, though. My baby has decided that he likes the night life (just like his old man). He was just playing, just happy to be awake. He's much more like his old happy self these days, and I am just grateful to see it.
Well, I will post more later.

Monday, September 13, 2004 2:35 PM CDT

750!!
That's what Jeremy's WBC count is today.
750.
That is more than three times what it was yesterday.
They told us this morning that he will be taken off of one antibiotic each day, because he now has some ability to fight off infection on his own. We will also begin tapering down the Morphine pump this week, as the mucositis should start getting much better now that his counts are on the rebound.
He has been in a fantastic mood every time he's been awake today. He played for 40 solid minutes in his Excersaucer (thank you Aunt Beth, Uncle Damien, and Cousin Lucie) this morning while I cleaned the room, and was perfectly content with entertaining himself. He is becoming more like the happy baby we all remember with every passing hour. He has just been full of smiles for everyone who comes into the room all morning. And is now taking the longest (and mostly sedative-free) nap.
Thank you all for your prayers, support, and concern during this very trying ordeal. Hopefully the worst of it is over, and we can start looking forward to Jembug being a happy, healthy (and totally immuno-sufficient) baby.
Love,
Holly

Sunday, September 12, 2004 9:45 PM CDT

Sorry it's been a few days, but we really haven't had anything new happen lately.
Jeremy's mucositis seems to be a little better, as he has started trying to suck on his little fingers again. He is still on the morphine pump, which we tried to taper down, but he seemed so uncomfortable we just moved it back up again. The rash he developed as a result of the cord blood transplant is getting better as well, although I'm sure it still itches like crazy. He was getting Benadryl for that, but it didn't seem to help enough, so we tried Ativan again last night. He must have some slight allergy to it, because within an hour after starting the infusion, his oxygen sats started falling again. This time, however, they just gave him something to reverse the effects of the Ativan. From now on, we will just be giving him a larger dose of Benadryl.
He is very cranky, and they've told me that it could be because of the steroids, which are known to cause mood swings. He is also starting to develop that moon-faced appearance (swollen, round) that is also a side-effect of the steroids. This is only accentuated by his (now) very bald head. His skin has also started to peel around his neck, and Dr. Chiang told me today that this happens all the time after a lot of chemo is administered. Chemo doesn't differentiate between good cells and bad cells - it just hurts them all.
We've also been informed that Jeremy will always be prone to developing secondary cancers because of the beating his little body has taken from all the chemotherapy he's received. Cytoxan can cause bladder cancer. Busulfan leaves lesions on the lungs. He must always wear sunblock. He can never EVER smoke. And the list goes on. Pretty scary stuff.
On the upside, however, his white blood cell count doubled since yesterday! It is still critically low, and he is still prone to infection, but any improvement at all is worth mentioning. He did not need platelets or a blood transfusion today, although he will probably need platelets tomorrow. They told me that once the bone marrow really started to engraft, the white blood cell count would double every day. So I guess we'll be able to tell more tomorrow about what exactly is going on in those little bitty bones.
Until then.
Holly

Thursday, September 9, 2004 11:29 AM CDT

Well, we got some good news this morning.
They moved Jeremy back to the Hem/Onc Floor yesterday afternoon, because fevers are no reason to keep someone in the ICU. He was still running a fever of about 102.5, and starting to develop some sort of rash on his neck.
This morning, the rash had gotten a lot worse. It now covers his neck, head, and upper torso, and is starting to spread to the rest of his body.
The doctors came in this morning while they were doing rounds, and told us that they think the new cells are starting to engraft!
They told us that they often see a rash and fever around the time of engraftment, as well as an increase in white blood cells (and his were up this morning to 200, from zero yesterday). They mentioned something called a cytokine storm, which Dr. Filipovich in Cincinatti also told us would happen around the time of engraftment.
I did tell them my fears about this being too early for engraftment, and they did say that normally it does take between 15-30 days. But they also said that the cord blood he received was a really good sample and rich in stem cells, and this could account for the early engraftment. They will not do the blood test that tests engraftment until day 30, so until then we just look for signs of engraftment and make decisions based on those.
Anyway, he's awake in the room and I can hear his Pa singing to him, so I guess I better go check on the two of them.
Thank you and God bless.
Holly

Wednesday, September 8, 2004 8:58 AM CDT

Hi, everyone. Thank you so much for all of your support - it means so much to us to see all those prayers in the guest book.
Well, we are still in the PICU this morning. They decided yesterday to keep him down there for one more day, because the mucositis is usually the worst between day +7 thru day +10 (and today is day +7). His pain level seems to be increasing pretty regularly, but he hasn't had any more respiratory problems since Monday morning.
On the down side, he did start running a fever this morning. Not an especially high temperature, but any fever at all in his current immuno-compromised condition is a reason for concern, as it could indicate some sort of infection. They have collected blood for cultures, but we won't know anything for at least 24 hours.
I don't know if this will interfere with their plans to bring him back to the regular floor today or not. The bone marrow transplant team will probably come down to the unit around 10:30, so I will know more about what's going to happen later then.
I will keep you posted.
Holly

Tuesday, September 7, 2004 9:12 AM CDT

Good news, everyone!
The last time I wrote, they were planning on taking Jeremy to the PICU so that he could be intubated. After writing my last journal entry, he started having trouble again, and so the respiratory therapist deep suctioned him, and he was put inside an oxygen tent. He didn't seem to have any more problems, but was moved to the PICU anyway so that he could be closely observed, and intubated immediately should he start having breathing problems again. He was transferred down to the PICU around three o'clock yesterday afternoon, and continued to do well throughout the night. He was taken out of the oxygen tent, put completely on room air, and had no more problems as of this morning - he seems to be much more comfortable (he was smiling for the first time in days) and is just doing better in general.
His BMT doctor has already come in to see him this morning, and told us that he sounds all better, and that we would probably be moving back up to our regular room either later today or tomorrow, depending on what the PICU docs say.
We all seem to be of the opinion that one of the reasons he was having so much trouble was because he was so heavily sedated. The morphine is actually making him itch quite a lot (his poor little eyes are just red) and so they were giving him Ativan on Sunday night for the itching, which totally knocked him out. He did not really wake up at all when all of that was going on Sunday night (even when he was being deep-suctioned by the respiratory therapist), so instead of coughing to clear his throat, it was all just sitting there because he was so sedated. So, we've switched to Benadryl for itching (which still makes him a little sleepy) and we are discussing switching his pain medicine from Morphine to Fentanyl (sp?).
So, thank you all for all of the prayers, and we will be posting again soon.
Holly

Monday, September 6, 2004 11:32 AM CDT

Just a quick update on what's going on with Jeremy...
This morning, his blood oxygen level started dropping and he seemed to be having trouble breathing. He was suctioned by respiratory therapy, and when his physician got here this morning, it was decided that he needed to be moved to the ICU.
The mucositis, which is getting progressively worse, has caused the tissue in his throat to swell due to irritation. On top of that, because his mucous membranes are irritated, they are making more mucous. So his airway is getting clogged by the excess mucous, and also is getting smaller due to the swelling.
They will be moving him down to the ICU sometime this afternoon. When he arrives, they will intubate him (to provide a passage for air, and also a way to easily suction the mucous). In order to be intubated, he must first be sedated pretty heavily, and will need to be kept heavily sedated until the mucositis resolves and we can take the intubation tube out. He needs to be in the intensive care unit during all of this because he needs more constant nursing supervision during sedation.
Since we will no longer be on the third floor, I am not sure how often I will be able to get back to the computer and update this website, but I will do it as often as I can.
Thank you for all of your support, love and prayers.
Holly

Friday, September 3, 2004 4:14 PM CDT

I just looked at Jeremy's guest book, and was really suprised by all of the responses... we really do appreciate all of your thoughts and prayers during this difficult time. It makes us feel better to know that he is on the minds of so many people.
The doctors have told us that this next week is going to be the worst, as far as keeping Jembug comfortable is concerned. The mucousitis is now causing him quite a lot of pain, but they are doing their best to control it with the morphine pump. He does sleep most of the time now, but rouses easily, so we know he's not getting too much of the pain medicine. The hives that he developed from the ATG are mostly gone now, but they are still giving him benadryl and steroids for it. He got a blood transfusion (the first of many, I know) this morning, and looks much better than he did last night, as he is not so pale anymore. Since your bone marrow produces all of those blood cells, and since he has no bone marrow at this time to speak of, he will be receiving blood transfusions and platelets on a pretty regular basis - until his new bone marrow engrafts and starts doing what it's supposed to do.
Most of Jeremy's care at this point is supportive - there is nothing we can actively do to make him better. Its our job now just to hold him, love him, give him tylenol for a fever and push the button for pain.
Thank you for checking in on us, and I will do my best to update this site as often as I can.
Holly

Wednesday, September 1, 2004 7:40 PM CDT

Aside from the cord blood transplant, today was pretty uneventful...:)
Everything went off without a hitch. They say that it is pretty common for there to be an increase in blood pressure, a drop in heart rate, and some vomiting during the actual transplant, but we didn't see any of that with Jembug today. He just laid there, rubbing his eyes... he is at the stage now where he does NOT want to go to sleep, and will just rub and rub his eyes to keep himself awake. We just stood by the crib and held his little hand, and he was a perfect angel. His blood pressure and his heart rate stayed totally stable throughout the procedure, and has not fluctuated all day long. They did start him on the Morphine PCA pump this morning (because of his mucousitis) and it really has made a huge difference in his behavior - he is more like the happy baby he was before all of the transplant chemo regimen began.
On the downside, he smells like creamed corn. They say that the chemicals they use to preserve the cells to prevent them from drying in the freezer is what causes that very distinctive odor - you can smell it on his breath, on his skin, down the hall.... it's very strong. To be honest, I really didn't believe that it would really smell like that - but he started to emit the odor about five minutes after they started the infusion. Also, the cord blood he received was from a little girl, which means that for the rest of his life, any bloodwork he has done will have female chromosomes in it. This will not affect him in any way.
He's doing well now - resting peacefully. The doctors have told us that this coming week will in all likelihood be the hardest one, because of the mucousitis situation coming to a head and all, so we are as prepared as we can be for that. But he's come through everything else like such a little champ, we know he's tough as nails and is going to be just fine when all this is over.
Thank you for all your support and prayers.
Holly, Josh, and Jeremy

Wednesday, September 1, 2004 5:20 AM CDT

Well, today's the big day. Jeremy will be getting his cord blood cells around 11:00 this morning.
Even though the chemo is over with, he is still very nauseous. He has also been put on three different antiobiotics due to his temperature spiking every day since starting the ATGAM. He has definately developed the mucousitis, as the inside of his mouth is completely white now. Also, the poor child has broken out in hives from head to toe - also a reaction to the ATGAM, from what I understand.
They are trying really hard to keep his pain and nausea under control, and because of all the meds he's on (such as Morphine, Phenergan, Ativan and Benadryl), he is sleeping pretty well off and on. They took his NG tube out, because A)he can't hold anything down anyway, and B)they thought it might be making him gag more. I am glad it is gone, and he doesn't seem to throw up as much now that it is out.
Anyway, he's pretty miserable right now, but at least we're done with the part of this where we're actively trying to make him sicker... now it's all about getting well.
Love,
Holly

Monday, August 30, 2004 2:07 PM CDT

Jeremy's doing pretty okay today. He is getting morphine for the mucousitis, so at least he is comfortable. He has not eaten anything since Saturday night, but he is on the IV nutrition, and they tell me that it's meeting all of his needs, so he probably doesn't even feel hungry. Today is D -2, and considering we only have one more day of chemo left, we're doing pretty well. His counts are still relatively high, except for his white blood cell count. That one is critically low, but it's supposed to be low now. They even said that most kids going through this already need platelets and transfusions at this point, but his seem to be dropping at a slow but steady rate. Everyone on his care team seems very happy with where he is and what is going on right now; he seems to be doing exactly what he's supposed to be doing at this point in the process.
Only two more days and he will get his new cells. From what I understand, the whole transplant is pretty anticlimactic - should be just like a blood transfusion. Josh is planning on taking off of work to be here for it anyway, which I am really happy about. I still have no idea what time that the transplant is going to take place, but I will let everyone know as soon as I do.
-Holly

Sunday, August 29, 2004 5:45 PM CDT

Hi, everyone.
Well, we're one week into this whole thing already. Jeremy has done pretty well up until yesterday, when the cytoxin started making him pretty sick. Today was our first ATG treatment, which we've heard is the worst. He got it around 10:00 this morning, and has just started to run a fever in the last hour or so. He is also having a lot of rattling in his airway, and the nurse has told us that it is a sign of the dreaded mucousitis. She instructed us to keep a good check on that, as it may mean that we need to be more aggressive with pain control issues. Additionally, he has pretty much stopped eating (nothing since last night around midnight) and so today they started him on the hyperal and lipids (IV nutrition).
Josh and I are still in pretty good spirits. Our doctors armed us for this battle beforehand, and it seems that we were not misinformed. Everything that they said would happen has pretty much happened so far, and we have not been surprised by anything yet. We both know that Jembug's gonna feel a lot worse before he feels any better; we only hope that he'll get through the hard part with as little suffering as possible.
We will keep posting entries on this site (hopefully daily) to keep all of his well-wishers informed about his general state of health and any progress he is making (or not making).
Thank you for all of your thoughts and prayers.
Holly

Sunday, August 29, 2004 10:38 AM CDT

This page has just been created. Please check back for additional updates.

Click here to go back to the main page.

----End of History----