Big Guy T and the Twins

The long version

2011-10-24T17:55:00.000-07:00

Many people have heard the very exciting story about how our beautiful boys came into this world. It was probably in passing or details may have changed in translation. So, if you care, here's how it all went down:

On Wednesday, August 17, I started to have contractions in the afternoon. Since I'd had a few false alarms before, I was skeptical, but warned Tyler who was working in Colorado Springs. As the afternoon progressed, I knew these were the real deal and by then my wonderful father-in-law was already on his way to relieve Tyler so he could come home. I also had my mom on her way over to hang with Trenton. When Tyler got home, off we go to St. Joe's! I was definitely feeling the contractions at this point, and needed to breathe my way through them. We arrive at the hospital and they go through the routine of setting up monitors, etc. They find that I'm only 2cm dilated, so send me to walk the halls and we are told to be back in two hours to be checked again. Well, we cheated and walked across the street so Tyler could get something to eat. I was so uncomfortable at this point and so ready to meet my boys!

So, two hours later, we are back in our triage room to be checked again. Still only 2cm dilated. So the doctor informs me they are sending me home. I start to lose it. How in the world are they sending me home?! She tries to be sweet and says it's hard to tell when you are in labor when it's your first. Which I strongly reply with "this isn't my first!" I somehow manage to tell her that I just have no idea when I'm supposed to come back when I'm having contractions every 3-5 minutes and they are sending me home. I will never forget, she says "when you are screaming and holding the side of the bed in pain, that's when you come back." Wow. The nurse made the mistake earlier of telling us how busy they were that night. We really feel that this had a lot to do with their decision. The nurse also told me she could tell I wasn't in active labor because I was laughing and smiling when I came in. Note to pregnant women: be a bit*#! and they will let you stay!

So, we leave the hospital at about 9:30pm and we go to my folk's house and pick up Trenton. I continue to cry. We get home, get Trenton settled and try to sleep. Tyler is able to knock out, but I continue to have contractions and can't even stand to lie down. I don't want to get too detailed, but probably around midnight I lose my mucus plug. I call the nurse at the hospital (which I could tell they didn't care for) and tell her. She says that's ok and ask if I'm resting in between contractions. If I could have reached through the phone and slapped her, I would have. In inform her, no, I couldn't possibly relax at this point. She says to try and pretty much hangs up.

Around 1:45 I am definitely in the "holding the side of the bed" kind of pain, so I wake up Tyler. He stumbles around for a minute trying to get his bearings and I inform him we need to leave ASAP. He calls my dad and says to meet us at the hospital and we'll hand Trenton over there as we don't think we have time to stop at their house. Dad and mom head to St. Joe's.

I have been going to the bathroom probably every 5 minutes, and the final time I just can't believe the pain and pressure I have, so I feel "down there." To my horror, I feel what I believe to be a head. Holy crap. I tell Tyler and he starts to try and get ready faster and I say (of course calmly as ever), "nope, call 911!" He does and the dispatcher tells him to check me out and to HIS horror, he says he can see a head right there. She instructs him to keep his hand in position to try and keep the baby in until the paramedics get there, which he does. I feel the strongest urge to push and can't. Let me just tell you, that hurts. Somehow Tyler has managed to get the dog outside and open the front door, so the firemen don't have to beat it down.

I think it was about 2 minutes into the 911 call that Tyler is screaming "when are they going to get here?!" I somehow managed to laugh and tell him to give them a minute, they don't have jets. At one point, Trenton wakes up to pee. I try to be as calm as I can, and Tyler strongly instructs him to go right back to bed, which he does. He goes right back to sleep (thank goodness). I think the paramedics took about 8 minutes to arrive. About 5 guys are in the room doing various things as I'm spread out on the bed screaming into pillows. Lovely sight I'm sure. They told us later they try to see if they can race me to the hospital, but quickly realize we don't have time. They put me in position and Mike (the main guy doing the actual delivery) says I can go ahead and push with the next contraction which I'm so excited to be able to do. With that push, Justin promptly arrives on scene. That was about 4 minutes after they arrived at 2:18am. Tyler "technically" cuts the cord but needs Mike to actually push his hands down. He holds our beautiful hairy baby and we are in complete shock. He is healthy and doing well, but barely makes a peep and just stares into Tyler's eyes.

At one point we realize we forget to tell my parents that we aren't headed to the hospital so Tyler calls my dad and can only manage to get out, "we already have one baby, come to the house!" I'm not going to say how quickly my dad drove from downtown to our house because I don't want to incriminate him.

We also realize we need help with Trenton, who did come out again at one point and chat with one of the paramedics. My lovely neighbor heard the firetruck and ambulances pull up, and knowing I was close to my due date, got dressed in case she was needed. One of the paramedics ran to get her and she kindly sat in Trenton's bed and snuggled him. She said he was a little weirded out, but doing fine.

I feel a ton better after pushing Justin out, but the next contraction comes quick. I push one more time and our Brayden is born at 2:22. Again, very quiet but doing well. They freaked us out how quiet they were, but maybe they knew they better cooperate after putting us through all this. Tyler had handed Justin off to another paramedic to help me, but wasn't able to cut Brayden's cord. Actually, the paramedic couldn't even find his scissors so just whipped out his knife to cut it.

Tyler and I are just in complete shock and just keep giving each other this look like "did this really just happen?" The guys get me downstairs and onto a stretcher and both boys and I are put into the ambulance. Tyler decides he'll follow behind us and meet us there.

I'm actually feeling great at this point and in good spirits. The boys are doing beautifully and we are off to Parker Hospital. I joke with the paramedics on the way about everything and the fact that they are excited to have two babies because they never get to hold one!

Shortly after the ambulances pull away, my parents arrive. They have no idea what's happening, if Tyler had to deliver the boys, etc. Tyler just collapses into my dad's arm from all the emotions. They come inside to what I'm sure looks like a murder scene and are filled in the events of the evening. My dad drives Tyler to the hospital (again, I won't tell you how quickly, but they may have beat the ambulance) and my wonderful mother and neighbor proceed to start to clean up the disaster that is our bedroom.

We all arrive to the hospital and immediately feel like celebrities and are the talk of the hospital. The boys are checked out and continue to do great. I also get checked out and have to deliver the placenta (which the paramedics preferred be done at the hospital). After the initial chaos and millions of questions, I get to hold my beautiful boys and savor the moment. I think I'm still in shock at this point, but am feeling great!

We later have the joy of calling our friends and family and shock them with our story, whether they believe us or not. Two days later we are released and the boys "return" home and we start our lives together. We could not be more thankful for the paramedics, our parents, and neighbor for getting us through that night.

Sometimes people start to talk about all the things that could have gone wrong. I can't. My heart can't handle the thought. I just know God gave us two beautiful boys that we've been praying for for a long time. They are healthy and have an awesome story to tell the rest of their lives.

Change

2011-10-24T17:50:00.000-07:00

Many things in my life have changed recently, so the blog might as well too! Trenton continues to struggle with ITP, but he's been strong and healthy and we are still hoping and praying that it will resolve itself in time. The sooner the better! But I thought I might as well include the newest members of our family in these updates as well. Of course, I don't have gobs of time these days, but I may update every now and then just to let you have a sneak peak at the craziness that is now my life.

Update (sort of)

2011-08-12T13:46:00.000-07:00

After almost a year, Trenton was actually seen by the doctor today. There really hasn't been any reason to see him, since he's staying pretty status quo, but after the last dip, I guess the doc figured he better check him out. But today's numbers were much better, 85,000! I was happy with that!

Doc really had nothing terribly new to say. He still believes Trenton has a chance of just outgrowing this whole thing. He said if it continues at this rate for years though, we'd probably start looking at some other things to do. He's also going to e-mail a buddy of his who wrote many of the articles on ITP and see if he suggests anything different. I would love to hear what he says, but I'm guessing it'll be to sit and wait. We are good at that!

Trenton was so good today. I realized he must pay more attention at my prenatal appointments than I think. He held out his little arm just like I do to get my BP checked. And when the doctor wanted him to lay on the table (which he normally doesn't like to do), he just jumped right up and laid down. I'm surprised he didn't lift his shirt up though. He is such a trooper. He doesn't even flinch when they take his blood, he's most interested in the whole process. He just kept saying he's so brave, which he is! It's really quite adorable to see.

The doctor said there was someone else there recently diagnosed and he's a hockey player, yikes! I told him that's what I worry about, Trenton getting injured from running around, playing sports, etc. But he reassured me that his counts are high enough that we really don't need to worry about it. The only thing he would get concerned about is if we were in a bad car accident or something. But then he would worry about a lot more too! Even then, they would just give him a blood transfusion to get him through. So again, it just made me feel better knowing I don't need to worry too much.

So, we'll continue down this path till next time!

Ickiness

2011-07-14T08:12:00.000-07:00

Totally forgot to write about Trenton's last blood test. Although I'm not sure anyone even checks this anymore. But it's a good outlet for me, so I will continue.

So, Trenton went in for blood work last week and I was a little dismayed when the nurse called to tell me he was down to 56,000. Not cool. I have noticed more bruising, but I really did not think it would go that low.

She talked to our doctor and he wants to see Trenton in the next few months since we haven't actually visited with the doctor in about a year. She said it was up to me to come in before the twins are born or after. Hm, I'm thinking of NOT bringing two newborns into a hospital if I don't have to. So, I'll make an appointment in early August.

People keep asking me what else they are going to do. Really, I don't think anything. There's really nothing else TO do unless this continues until he's a several years older (ick), or his counts really drop (more ick). So I'm sure we'll continue to sit and wait and pray.

In the meantime, Trenton is very busy getting ready for his new baby brothers. He is so excited, it's really cute. He loves to pat my belly, feel them hiccup, sing songs to them and pick out things to buy. The cribs are up, which I thought would throw him, but it only made him more excited. He was a little disappointed that there's a crib in our room and he learned they won't share a room in the beginning. I'm sure he'll thank us later. I really think he's going to be an awesome big brother.

Caring

2011-02-17T14:47:00.000-08:00

Trenton's platelet count is at 77,000. So, it seems as there has been no change since December. But I know better. Last month I was a little worried about him because of a few signs that we're used to seeing. But today it's the same count. My best guess is was a lot lower last month, and it's on it's way up again. But I don't know! That's the most frustrating part! I'm sure I'm just being hormonal and all, but I'm getting sooo sick of this. Well, to be honest, I've been sick of this for a long time, it's just surfacing again.

Tyler thinks I'm insane, but I still get this vibe from our nurse that I'm being paranoid and overprotective. She's got other kids to worry about that are dying and going through chemo and radiation and far worse things that little kids (or anyone for that matter) should have to go through. Trenton's not at that level. I know that and am very thankful for that. But he's still my baby and I want her to know that and not just ignore me. If you say you will call me later to talk about his test results, then do it!! Is that really asking too much?

OK, I think I feel better now. See you in two months when this all happens again.

Love/Hate

2010-12-12T19:13:00.000-08:00

Trenton's count last week was 74,000. I'm probably not as excited as I should be. He's been looking really good lately, so I was totally preparing to hear a much higher number, maybe even something in the 100's. But, 74 is good. I keep telling myself that.

Tyler keeps reminding me that it's hard to compare when we are only doing checks every other month or so. He could be at a low point right now, and is heading up again. I sort of wish there was a machine that existed that I could check Trenton's blood myself at home, like a blood sugar test. Tyler thinks Trenton's finger would be poked raw from me doing it every day. He's probably right. It's just so hard not knowing what's going on inside your kid's body!

In the closet the other day, I found the helmet Trenton had to wear when when his counts were so low. I had a love/hate relationship with that thing. Looking at it brings back the memories of when this all started, two years ago this month. I looked back at the pictures of his little body just covered in bruises, and another where one entire side of his face was black and blue. It seems like an eternity ago. I debated holding on to the helmet as a memento. Is that morbid? Or is it a sign of how precious life is and how amazing it is that Trenton is well?

I did give it to our nurse last week, thinking another family could benefit from it. But kind of hoping no one will ever need it. But someone will, and I pray that God keeps them as safe as he has Trenton.

(Trenton saying goodbye to the now too-small helmet)

Overdue Update

2010-11-07T17:36:00.001-08:00

I was given grief today by an unnamed person, whom I will just call "dad," that I haven't posted anything in a while. So, here we go!

Things have been going pretty smoothly lately. About a month ago, I noticed a lot of the tiny red bumps on his belly, which is usually a sure sign of a low platelet count. I e-mailed our doctor to see what he wanted to do, and of course ordered the usual blood test.

I was really preparing myself to hear a low number so was again pleasantly surprised to hear he was at 103,000! I was really in shock and extremely grateful.

Trenton's been doing just fine, as he always appears to be, so we will just continue hoping that he grows out of this obnoxious disease. In the meantime, we continue to watch for signs, worry any time he bonks his head, and pray.

Blah

2010-08-20T18:23:00.000-07:00

Trenton's blood count today was 42,000. I wasn't really surprised as I was starting to see signs a few weeks ago. So his numbers were probably even lower before, and now hopefully on their way up again.

But the doctor is starting to look concerned. He usually just jumps right into his usual schpeel (not sure how to spell that) of "let's keep sitting on it!" But he didn't really have that today. He was starting to bring up the next option, a chemo-like drug called Rituximab. It's typically used to help treat lymphoma, leukemia, etc. It's not supposed to have the super bad side effects that regular chemo does, but could still make him feel yuck. It's just scary to think about all the trips and IV's and sitting around in the clinic, etc. But, we aren't totally there yet. Apparently it's crazy expensive, so insurance companies aren't super willing to see it as necessary.

So the doctor said to call him the next time we can tell his counts are lower, and get him tested, to help his case that he really needs this. Then we'll decide what to do.

It's hard because you want to do anything possible, but you also want to protect your child from anything that will hurt him! So please pray that we have the wisdom to know what to do. Or just that his counts sky rocket and stay there. That would be much easier.

Not out of the wood yet

2010-06-27T17:58:00.000-07:00

I never did hear back from our nurse about what she thought about Trenton being on steroids when he was last checked. So I just e-mailed the doctor and he replied right away, even while he was on vacation! So we brought him in last Friday to get his blood checked and have a quick visit.

Just when we thought this whole ordeal might be coming to an end, Trenton is back down to 54,000. He still looks good (for a crazy 2-yr old boy), and the doctor said he should, since 50,000 is kind of the magic number. Again, we will wait and hope that he continues to improve. We are getting pretty good at waiting.

The good/interesting thing is that all the dips he's been having, have continued to be higher and higher. You can see the chart at the top if you are more of a visual person. It helps me stays positive :)

Cautiously shocked

2010-05-07T13:44:00.000-07:00

I'll start with a little background. Pretty much every spring Trenton gets a cough, or RSV, or brochciolitis or some other crappy lung thing. It happened this week...again. So, the nebulizer (or "the machine", a nickname I stole from my asthmatic brothers) came back to life and Trenton was put on a low dose of Prednisone for a few days. 2-year-olds on steroids can be a very scary thing.

When we first found out about Trenton's low platelet count, he was put on Prednisone. I guess it's the first line of attack. It didn't work. They tried it again later, it didn't work.

So, why am I telling you this? Because we got Trenton's blood checked today and I received a voice mail (which will probably remain on my phone for a while) that said Trenton's count is at 157,000.

Aaaaaahhh!

My parents say we should celebrate, but I'm still nervous. I'm nervous that when we stop the Prednisone tomorrow, the count will plummet again. Am I being a pessimist of a realist? Either way, he's at 157,000! I may let Trenton run around today without me running behind him with reached-out arms waiting for him to fall. I may release him from his plastic bubble!

The hematology doctor thinks we can wait a few months to get him checked again. He doesn't know about the Prednisone. I'm waiting to hear back from my nurse to see if she thinks it could have made that big a difference. Hearing what she says I think will make me either continue to cautiously celebrate, or really take a big sigh of relief that this freaky thing may be coming to a close. I just hope she calls soon.

Again, I can't thank everyone enough. I know people continue to pray all the time. I was just told a little friend of Trenton's still continues to pray for him in class, which almost made me cry! Obviously God cannot ignore that.

Stay tuned for the nurses' verdict...

Good news and bad news

2010-04-11T19:47:00.001-07:00

I'll start with the good news...Trenton got his platelet count a week earlier than expected, and they were almost doubled at 63,000! The bad news is WHY he got them checked early.

The craziness started late Saturday morning when Trenton was playing on our bed. Tyler just got done telling him to stop jumping, and I was cleaning the floors next to the bed. The I hear a loud thump and see Trenton on the floor next to me, whacking the back of his head. I grab him and he's freaking out. As I start to walk him to his room, he's doing the sucking in thing and I'm just waiting for the wail to come out, but I don't hear it. He goes totally limp in my arms, passing out. I start screaming for Tyler, and hand Trenton to him. As I'm trying to figure out how to use a phone, and remember the number for 911, I'm thinking my son is paralyzed or dead, but then he's starts crying. He was probably only out for about 5 seconds, but it felt like an eternity. Worst...feeling...ever. I was just completely shaking and freaking out. Tyler actually did really well! It's a good thing that at least one of us can have a level head at certain moments.

Trenton is crying pretty good, but we decide to just call the doctor. Tyler talks to them while Trenton and I cuddle on the bed. He seems to be in pain, and kind of out of it, but doing OK. The doctor says just to watch him, but to bring him in right away if he throws up or acts really lethargic.

So we continue cuddling, Tyler goes to grab some Tylenol (thinking he must have a massive headache) and he just starts screaming again, then he throws up. Off to the ER! I realized it's hard to change clothes while shaking!

At Children's, the doctors and nurses are great, and very quick. After checking him out and talking to the hematologist, they decide to do a head CT since his counts were so low, and they would just feel better if they could rule out a brain bleed. Normally, they probably would have just watched him for a couple hours, but ITP butted it's way in again.

The CT was pretty rough, having Trenton squished into this little head thing, just screaming. But he eventually gave in and did really well. Tyler did great too, having to hold his hands and try to soothe him. While waiting for the results, they decide to get his counts checked while we're there, so they have an idea of where he is now. They were worried it was pretty low, since his belly is covered in petechiae.

The rest of the time was good news. The doctor told us that the scan looked great, and his counts were even up! She said he probably just has a concussion and to watch him really close the next couple days. Oh, and to take it easy. Yea, two-year-olds don't understand what that means. Trenton was already doing better, happy as usual, and ready to run.

I did have to wake him up during the night, to make sure that he would wake up. He just kind of looked at me, like "what the crap are you doing to me?" I took that as a good sign.

He did great the rest of the day, and had a blast today with all his cousins. You would never have guessed he had a concussion the day before. It's amazing how quickly they can recover.

I really felt like Trenton was covered in prayers. The word spread quickly, and I just feel like everyone is so concerned about him and loves him. It's nice to know he (and we) are so supported, and that God continues to take care of our little crazy man.

Hopefully the next count is done as just routine!

Nearly perfect

2010-03-12T18:18:00.000-08:00

I took the day off today to take Trenton to Children's for lab work and see the doctor. His last count was 81,000 so I had dreams of him hitting 100,000. I had a plan if he did. I was going to surprise people with the number. Go to Papa's office and put a sticky note on Pastor Sam's door next to all the other notes. Then we'd go surprise daddy at work. Post it all over the internet, send texts.

Yea, that didn't happen. The doctor came in and told us that he dropped down to 34,000. He was so sweet and just kept saying how sorry he was. He still is holding on to the hope that Trenton will get better on his own, and does not want to do any treatments right now. He said if he dips to 10,000 we'll have that conversation. He knows how hard this is, and says this is the crappy part of this disease, that it's so up and down. He also said he was so hoping to see him hit 100.

I left the office feeling pretty defeated. I tried to prepare myself a little bit, because we saw signs of it dipping. But I secretly thought that if I'm prepared to hear a low number, I'll be that much more surprised when it's super high! It's weird how our minds work.

But, we still had all day to hang out, so we took advantage of the awesome weather. We went to the zoo for a little while, then went downtown to have lunch with Tyler. When we got back home, we both took naps, then we went for a long walk with the dog. Followed by leaf raking and chalk drawing. Could have been a really awesome day if the number 34 didn't keep coming into my head.

I'm trying really hard not to feel sorry for myself, or for our family. There are so many worse things that could happen, and we are certainly reminded of that when we are at Children's and see all the other kids going through chemo. And I was reading this other family's blog about their little girl losing her battle with cancer. I still have my son, he's thriving, he doesn't know he's sick. I'm just so sick of it! I just keep praying for the day I can surprise everyone with the news. I'll keep planning.

All things potty

2010-03-08T20:09:00.000-08:00

Lately I feel like my life is revolving around the toilet. No, I'm not sick, we are in the throws of potty training. But I'm really not complaining because it's been a while since I've had to change a dirty diaper. I know everyone says this is so hard. I think we lucked out! About a week or so ago, this little toilet shaped light bulb must have gone off in Trenton's head because he decided he wants to go on the potty all the time. He has been going a little bit for a few weeks, but would never tell me BEFORE he had to go. But he's done so well! And he loves picking out his underwear every morning. We just got him a bunch of new ones with Disney characters. Last night he actually woke up yelling "Goofy!" I hope it was a good dream and Goofy wasn't picking on him or something!

Anyway, sorry for the potty talk. But that's been our life. Trenton continues to do well. I have noticed a few more bruises and things, but sometimes I think I'm just psyching myself out. We get him checked on Friday, so I'm really anxious to see the results. Last time they went this high, we were crushed by a huge drop. So I'll be very happy if it's anything higher than 81,000.

I just can't wait until I don't have this lingering fear following me all the time. When I don't worry about every bump and bruise, or have to inspect every owie thinking it could turn into something worse. Or does every parent do that?

So stay tuned on Friday, I try to post the results as soon as I can. I am taking Friday off though to take Trenton to the clinic. Then I think we'll goof off a bit. Hopefully with a celebratory lunch!

81!

2010-01-29T16:22:00.000-08:00

81,000! Need I say more?

I got to talk to the doctor today, briefly (it's a long story why only for a short time). He was very excited and thought Trenton looked great. He said he wants to continue checking counts, and just waiting. He doesn't want to do anything unless Trenton dips below 10,000 which hasn't happened in a while. So we will wait about 6 weeks and check him again. I'm keeping my fingers crossed for over 100,000!

I was very happy when we were leaving the hospital, but I was quickly reminded how fragile life is. Trenton and I were walking behind this couple on our way to the car. I have to admit I was getting a little annoyed by how slow they were going. As Trenton and I passed them, I noticed her giant pregnant belly. Oh fine, I guess she's allowed to walk (waddle) slow. When they got to their car, the man grabbed her and gave her the biggest hug. They stood there for a while, the woman just melted into the hug. I can't imagine what news they might have just heard about their little unborn baby, but it must have sucked. I almost started crying for them, and have been thinking about them ever since. I can only hope and pray they be comforted and God will take care of their little one like he has mine.

Prayers

2010-01-29T11:40:00.000-08:00

Trenton has an appointment this afternoon to get a blood test. He's been looking pretty good, so please pray hard that his numbers are outstanding!

I'll post the results as soon as I can.

No news

2010-01-27T07:03:00.000-08:00

I have no news! Just thought I would say that. It's been about 5 weeks since we've gotten Trenton's blood count. I can tell when it's time to get him checked again because everyone I know is asking how his counts are. Which is amazing on it's own! I still continually get people telling me they are thinking about Trenton and praying for him. How cool is that??

I did just e-mail the doctor to see what he's thinking. I feel like I'm being a pest, but I'm afraid they've kind of forgotten about him. Again, I know he's not deathly ill, but he's the cutest, sweetest little guy in the world, so you'd think they should all care about him as much as I do, right?!

I'll keep you all posted!

And I shouldn't say we have NO news, we do have a new nephew! Isaac deRidder was born yesterday. He's super cute (duh) and he and Chris are doing very well. Trenton thought he was pretty cool, and just kept staring at him. He just loves all his cousins, which is so fun.

Also, we recently took a quick trip to Telluride. Here's just two of my favorite pictures:

Good Times

2009-12-21T15:51:00.000-08:00

What a great week so far...and it's only Monday!

Trenton's count is at 56,000. I was quite surprised by this as I knew he took a dip a few weeks ago. So hopefully that means he jumped right back up, and will continue to climb.

After going to Children's this morning, we got to go to the zoo with a bunch of cousins! Rick and Sara are in town, so I've taken most the week off work. Trenton has been so excited to just hang out with the family.

A few of the highlights so far:

Sorry Dad

2009-11-23T20:05:00.000-08:00

Sorry, I was getting grief for not posting in a while. But there hasn't been a whole lot to report. I realized it's been a while since Trenton got his blood count, so I brought him into Children's last week to get checked. We had to wait an exceptionally long time for some reason, but luckily they have lots of great toys and they brought out the little plastic car again. Otherwise, I don't think we would have made it.

Anyway, he got his blood work done and he's up to 45,000! Not too shabby. I really thought (and of course, hoped) that it would be much higher. He doesn't have a lot of bruising and the petechiae are gone. But it's still up, and I'm very happy about that. Or at least that's what I keep telling myself.

I finally convinced Tyler to take some pictures of our OWN kid, and the wait was certainly worth it. Here's our little monkey:

Surprising

2009-10-26T12:43:00.000-07:00

Trenton's count is at 36,000 today. I was expecting a lot worse! He's been pretty bruised lately, and has had a lot of petechiae on his stomach, so I was really waiting to hear some pretty low numbers. Being sick can also lower his counts, so I was worried this last cold he had may have hurt him too. But he's hanging in there!

Tyler and I just got back from Texas last night, so Trenton was able to stay with Papa and Grandma DeRidder for a few days. He seemed to have had a blast. I can't show any pictures because the only one's I received he was naked!

As soon as Tyler is done with some wedding photos, I'll start pressuring him to take Trenton's 2 year pictures. So I'll be sure to post those :)

Reflections

2009-10-19T20:21:00.000-07:00

It's so weird to think that two years ago today we were in the labor and delivery room at St. Joe's, actually getting induced at about this time. The little bugger's heart rate would drop after contractions, so the docs wanted him out a little quicker.

Early the next morning we were introduced to this tiny little red-headed thing that has since stolen my heart. It's certainly been an adventurous two years! It's also hard to believe that we've been dealing with this crazy disorder for almost a year (in December).

I also found out today that my cousin had the same illness when she was little. I heard some talk of that, but my mom confirmed it while visiting my aunt and uncle in Michigan. Strange. She had to have her spleen removed when she was four, but I'm trying not to think that far ahead yet.

We will do blood work next week. I told the scheduler I'm not in any big hurry, because I'm afraid to hear the numbers. Trenton looks pretty badly bruised lately, and has the spots all over his belly, so I'm not real optimistic.

Nonetheless, Trenton continues to amaze me every day. He finally learned to say his favorite neighbor's name, can jump like a pro, and Tyler swears he changes the TV channel to cartoons while he's getting ready in the morning.

Happy Birthday buddy! (maybe wish for some platelets when you blow out your candles tomorrow!)

Down

2009-10-06T17:57:00.000-07:00

I had to take Trenton to the doctor yesterday for an ear infection, so had them check his blood count since we were already there. I usually go to Children's, and I was reminded why! They really are super sweet, but can seriously not do kid's blood draws nearly as well as the Children's nurses. But, he got through it. He kind of started to help the two nurses it apparently required, so they were pretty impressed. They think he should be a doctor.

Anyway, they called today to let me know that it is only at 29,000. Tyler's trying to convince me that it's still higher than it has been, and is still optimistic about it continuing to climb. I figure one of us can be a stressful mess, and the other the level-headed one. That seems to work well for us.

Rising again

2009-09-25T17:45:00.000-07:00

Trenton is at 59,000 today! He was, once again, so brave! Tyler and I are happy, but trying not to get too excited. He definitely looks a lot better lately, and continues to have an abundance of energy.

I took this picture this afternoon to show just what a happy little man he is. He's really starting to like the dog too.

Thanks again to all of you for your constant support, cards, help, etc. We continue to feel extremely loved and cared for!

Holding Steady

2009-09-12T13:14:00.000-07:00

Trenton's latest count was 25,000. Just a slight dip, but still the wrong direction! Our doctor still wants to hold off on doing the next treatment. He keeps saying that when kids start to get better, it can go up and down like this.

We did get a little into what the treatment would be like, and it sounds a tad nastier than we've heard before. But he cut off the questions and said, "we're not there yet." He's still very sweet and I'm really glad we made the switch.

Trenton is so good when we are there, the doctors just laugh. They always feel his belly to feel for the spleen, and he just pulls up his shirt and giggles. When we get his blood taken, he usually sits on my lap to do it. But Friday, he just got up right there on his own. I asked him if he wanted to just sit by himself, and he said "yea!" Which he did! He just sticks his little finger out and watches the blood drip. He certainly does not get this trait from his father! (who can't even watch ER without getting nauseous). Sorry Tyler.

When we were leaving, a firetruck was pulling up to do some sort of training, and they were letting the kids play in it. Trenton just stood with amazement, but only wanted to watch from a safe distance. He hasn't gotten brave enough to actually go inside. He did get a cool sticker though!

Fingers Crossed!

2009-09-10T17:41:00.001-07:00

Trenton sees the doctor tomorrow and we'll do another blood test. Not sure why we need to go in, since his count did go up a little bit. But, oh well.

I'll keep everyone posted!

Daddy T

2009-09-07T11:17:00.000-07:00

So I'm thinking I might have to re-name this blog to "Baby T and Daddy T" and give updates on BOTH of my boys!

As some of you may have heard, Tyler was recently diagnosed with Crohn's Disease. He hasn't met with his doctor after the many tests he had to do (of couse while I was out of town), so we aren't sure what we are facing yet. But he is feeling a lot better, and isn't doubled over in pain every morning. So that's always good! Hopefully we can learn a lot more when he sees the doctor.

Trenton got his platelet count checked on Friday. He has been so bruised up lately, I was just preparing myself to hear the 3 or 5,000 result, so I was super excited when our nurse told us he was at 27,000. She said it's still pretty low, but I was just excited that it didn't plummet! I think we will be seeing the doctor later this week, so we'll see what he wants to do.

Papa DR and I decided that we will just be pessimistic from now on about Trenton's counts, then we can be surprised and happy! :)

Trenton and I just took a trip to GR to visit Uncle Ricky and Auntie Sara. Here's just a few of my favorite pictures:

Another quick update

2009-08-21T19:11:00.001-07:00

Just another update from today. The doctor called just to make sure we heard Trenton's count, and to see if we had any questions. This guy is super cool. He said it's completely normal to go so up and down, not that it doesn't suck! He said he was really hoping that we would never have to see him again. I told him I was hoping the same, but that he shouldn't take it personally. He said he hears that a lot.

He still doesn't want to do any other treatments unless Trenton's counts dips way down again and stays there. So it seems he's still optimistic that Trenton might just make himself better. So that made me feel a little better. (Better to the point that I could make it through the rest of the work day).

I'm still feeling pretty defeated. I was just so ready to put this all behind us and move on. But I asked Trenton today if he could work on making more platelets and he let out a very enthusiastic "yea!" so, we'll see.

Crushed

2009-08-21T11:39:00.000-07:00

Trenton's count is back down again, to 17,000. I really tried to prepare myself for this, thinking the rise in counts was really too good to be true. But we were still trying to hold on to that hope as well.

I haven't spoken with the doctor yet, so not sure what the next step is. We'll pass it along.

Thanks for all the prayers, Tyler and I need 'em!

Hoping

2009-08-21T06:42:00.001-07:00

I am taking Trenton to get another blood draw in a few minutes. He's still been doing really well, although I have noticed a few more bruises. But he bounces all over this place, so it's probably normal!

I will try to update as soon as I can!

Almost there!

2009-08-10T11:02:00.001-07:00

I've have been waiting so long to say that Trenton is on his way to recovery!! We got his blood checked last Friday and his counts have more than doubled at 93,000! Tyler and I feel like this huge burden has been lifted, and finally feel that we can celebrate. The doctor even called us later on Friday to see if we had any questions and seemed very excited.

Thank you to everyone who has been so supportive through this whole thing. We have certainly felt all the love! I will continue to update as normal counts are between 150,000-450,000. But we are almost there!

I'll post some pictures later of our amazing camping trip. Trenton is absolutely a camping boy. He did so well and had so much fun. And I didn't have to freak out about him having little falls!!

Thanks again to everyone,

Lucky 48

2009-07-24T11:09:00.001-07:00

Trenton's platelet count is at 48,000 today!! That is the highest it's been since all this junk started. When the doctor was reading the results, Tyler and I both had to ask him to repeat it. We are super excited to say the least.

We met with a hematology fellow first, who was super cool, and we kind of did a rundown of everything. Then we talked about our options (which are somewhat different from what the previous doc gave us). But after we got the results, we are definitely going to hold off on doing anything until we see if Trenton's little body will just continue to work this out on its own. But, it's still nice to know we have options!

We talked to the actual doctor later, Chris (NOT Dr. something, he thinks that's dumb). He was also very nice and walked us through what the other treatments are, but again, won't do anything unless his counts go back down.

So now we'll just get his blood checked in 2 weeks to see what it's doing, and decide what to do from here. Hopefully it's just celebrate!

Tomorrow...tomorrow...

2009-07-23T20:55:00.000-07:00

So we have our appointment tomorrow. I haven't really thought too much about it, but am starting to get anxious now. Trenton continues to feel really well, and seems to be doing just fine, but we always think that!

At least I am taking the day off, and we get to drive go-carts in the afternoon with Tyler's work. We'll see what Trenton thinks of that! Hopefully he isn't as terrified of those as he was of riding the carousel at the zoo last night, holy cow! You would have thought I was bringing that kid to ride a real lion! I think he was most upset that Papa wasn't saving him!

Switching

2009-07-13T07:31:00.000-07:00

So we finally have another appointment for the big man. We go in next week Friday, the 24th. And we are seeing a new doctor. I'm a little nervous about it, mostly because I don't want to hurt the other doctor's feelings and I wonder what we'd say to her if we see her there.

But we were starting to feel a little frustrated when we'd hear something different at every appointment, and we were told we'd get a call the next week, only to have to call them three weeks later. I know my kid is not dying of cancer or anything, but it's still terrifying for us at times. The doctors really do seem to care when we are there, but we also feel like we are being blown off a bit. Maybe it's not a big deal, but it is to us!

Anyway, we'll see how this one does! Trenton continues to do well. He is bruising like any other almost two-year old crazy climbing maniac. He's had a few tiny blood blisters in his mouth, but no nosebleeds for several weeks. He had to be on prednisone recently for asthma, so maybe that helped bump his count up a bit too. We'll see.

His new favorite toy at bedtime is this super cute black bear from his Great Auntie Anna. I just had it sitting there the other day on a pile of other bears, and he INSISTED on holding it while reading his books. He must have known it was from someone who loved him! So thank you everyone for your continued support.

Patience

2009-06-30T07:15:00.000-07:00

Many people have been asking us about Trenton lately, so I thought I should post a quick update. Although there's really nothing to update! He had that bad week of bloody noses, but has not really had any problems since. He's been feeling good and just being his usual rambunctious self!

His doctor finally called us back after talking to several other doctors around the country about treatment options. None of them have used this other chemo-like drug on anyone under the age of 5, so we will NOT be doing that. She also said National Jewish just finished a huge ITP study, so we'll see what comes of that in the next few months.

Until then, we continue to wait. Since Trenton is feeling well and not having any adverse reactions at the moment, we will continue to sit on this.

He is getting funnier and more talkative and more wild every day. Here's just a few quick pics from the recent 3rd church retreat in Estes Park, and playing in the fountains at Southlands.

Bloody Tuesday

2009-06-10T07:17:00.001-07:00

Maybe some of you are thinking, what does this disorder really do to Trenton other than he bruises easier? Big deal! Well, let me tell you.

I was about one second from falling asleep last night when I hear "owie...owie" Not really a painful cry, more of a matter of fact kind of statement, with some curiosity. Crap, I know that means he sees blood. So I go in his room and Trenton is absolutely covered in blood. His nose had probably been bleeding for about a half hour. It's on his face, jammies, blanket, pipe, and his sheets are drenched. The poor kid just looks at you like, what is going on?!

So Tyler and I begin to change sheets and wipe new blood and crusty blood, etc. We call the Children's Hematology direct line (which is kind of your prize for being a patient there), and the doctor gives us instructions. We have a medicine that we've used for his mouth, which they say to give him. Then Tyler runs to the drug store to get some nasal decongestant spray (not sure why that works), and more Kleenex since we are quickly running out.

Meanwhile, Trenton is more hyper than any 19 month old should be at midnight. He just thinks were having a pajama party! Except for the constant nose wiping, he's having a great time. Although he does catch glimpses of all the blood and gets concerned, but quickly gets over it.

Anyway, the bleeding finally stops around 12:30 and Trenton is in bed with us as we try to get him to calm down a little bit. He does eventually, and its back to bed for all of us.

This morning, I noticed he did bleed a little more and his poor little nose is just a crusty blood mess. He really hates that. But he's otherwise good! I think the worst part for him was me not giving him his pipe back since it was in the laundry (it's attached to a blanket). So luckily I don't think he'll be too traumatized.

Worse but unaware

2009-06-02T16:06:00.001-07:00

So, not such great news today. Trenton's platelet count has gone back down to 6,000. At this point, we'll probably wait a little more, and maybe try doing IVIG (an IV infusion) and/or Prednisone again. We've done both of these with no inprovement, but Dr. Hays says that sometimes it works a little better when the person is more chronic, which is what Trenton is starting to be.

Hays also said she could put us in touch with another parent who has an eight-year old girl, who's had ITP since she was 6 months old, and still has very low counts. At first, I think, great, someone else who's going through this! But then, that also scares the crap out of me. You mean, this could go on for 6 MORE YEARS?!

We will not be doing that nasty chemo-like drug. The doctor hasn't used it on anyone under the age of 5 before, and is very hesitant about that. She's going to be talking to another ITP doctor in New York and ask some questions. Then she'll call us next week with the plan.

So, we wait some more. Hays even thought Trenton has looked better than she's ever seen him. The nurse also told us that when Hays saw Trenton on her schedule for today, she got so excited. Gotta love that.

So, having taken the day off for this appointment, I thought I would take Trenton to the zoo. But, the zoo sucks in the rain. So we went to the Children's Museum instead, which was super cool. Trenton was a little nervous about it at first, and just kept standing there and watching everyone, but eventually got used to the idea :)

As Papa says, someone should tell this kid that he's sick, cause he certainly doesn't seem to know it!

almost there

2009-06-01T17:10:00.000-07:00

So the big day is tomorrow. I am so anxious to see what Trenton's counts are. He's been looking pretty good lately, so we are just very hopeful. Someone asked me the other day what I would like his counts to be. I think I keep hoping for 50,000 since that's the magical number for not wearing the helmet (not that we've been that good about it anyways). But I think anything higher than what he's had would make me happy.

We go in at 9:00am tomorrow, we'll keep everyone posted!

Anticipation

2009-05-28T07:06:00.000-07:00

I don't have much to report right now, but we are anxiously awaiting Trenton's next doctor's appointment next week. We are going back to the hematologist on Tuesday where we'll check his count again and see what to do from here. It's been the magical 6 months, so we are quite nervous about what they'll say if he hasn't improved at all.

We were so excited before when they started to go up, but then it leveled off. After that, he has had some more bruising, random crazy nosebleeds, etc. He got a nasty cut on his lip (of course from playing with trucks), but that seems to be going away quickly, with the help of a certain medicine we can give him for any mouth sores. We haven't gotten him checked in a few weeks, so we really aren't sure what to expect!

He still feels wonderful and acts wonderful (minus the usual toddler moments), so we are happy about that. He's also becoming quite a flirt at school, or so his teachers tell me. So we really hope he can remain there all summer and not have to go through any nasty treatments.

Thank you for your continued prayers, and throw 'em out there on Tuesday!

False Hope

2009-05-06T19:26:00.000-07:00

Well, Trenton's counts are staying steady at 25,000. I am trying really hard to be grateful that they haven't fallen, but it's extremely difficult. I called the nurse on my way to a meeting, just expecting some great news. When I heard they were the same, my heart just sunk. Then I had to figure out how I was going to get through the meeting!

We'll probably have to just wait another couple weeks and get him checked again. He's at the point now that he screams any time we have to go to Kaiser and we go to the "back room." Maybe I'll have to bring him to Children's next time, the finger poke isn't quite as dramatic for him.

I was just so excited about being able to post some great news, maybe next time...

Prayers Please!

2009-05-05T06:36:00.001-07:00

As some of you may already know, I am going to take Trenton to get his blood taken later today. We are so nervous but also very hopeful.

Trenton took a spill the other day and just whacked the back of his head. But the good part was, he didn't bruise at all! Normally that would have resulted in quite a display, so that really makes us think his count will be much higher.

We'll go this afternoon, but probably won't hear anything until tomorrow. Please be praying for high numbers! If it's over 50,000 we can ditch the helmet!!

On the Rise!

2009-04-23T19:28:00.000-07:00

I got an e-mail from the doctor this morning saying that Trenton's platelet count has gone up to 26,000!!! It hasn't been this high since December. He hasn't been on any medications, which means they are rising on their own. This is exactly what the doctor was hoping for, well, what ALL of us were hoping for!

Tyler and I are somewhat nervous to be so excited, afraid that this is only temporary. We wonder if maybe the pneumonia made his little system take the focus off the platelets, and fight another infection. I just hope it stays that way.

But we are really trying to stay positive, and just keep praying that the numbers continue to rise.

Trenton got wonderful prescriptions from his Dr.'s Naomi, Caleb and Pete deRidder - so maybe those will keep him strong!

Seriously?....More?

2009-04-17T19:59:00.000-07:00

I hesitate to post this, because I feel like the worst parent in the world. But maybe it'll make someone else feel better about their parenting skills!

Trenton has had a little cough the past couple days. He was miserable last night, coughing a lot and just breathing super heavy. He did pretty well at school today, except at the end his teacher said he was really sucking in hard to breathe. So in the lovely snowy traffic, we haul off to Kaiser. An HOUR later we make it there. The doc listens to him and orders a chest x-ray, which Trenton really did not like. He just gave me this look like, "what are you doing to me??"

So, it's discovered he probably has pneumonia. I just keep thinking, hasn't this poor kid been through enough?! Luckily his O2 levels were good, so we were just given some antibiotics. The doctor said he was very glad I brought him in today (thanks for the advice, mom). He thinks he'll start to feel better in about 24 hours. Phew!

So he's sleeping soundly for now!

Side note: Trenton and I have been saying our prayers before he goes to bed lately. He folds his tiny little hands and closes his eyes (mostly), it's so precious you want to cry. And when we're done he says, "yeeeaaa!" I figured God loves enthusiasm!

Another Random Update

2009-04-11T08:36:00.000-07:00

Well, Trenton is just chugging along! His eye looks so much better, we don't get all the "oohs" and "aawws" while in public anymore. He still has quite a few bruises on his legs, but those are easily covered up. If it wasn't for his helmet, you wouldn't think anything was wrong with this kid! Which is fabulous that he's so happy.

I missed this conversation at the doctor's last time, but apparently if he does have to go through the other treatment, he wouldn't be able to attend day care because of the risk of infection. We were freaking out about this a little bit, afraid we would have to continue paying in order to keep his spot in school, AND find somewhere else for him to go, or take a ton of time off work. But I spoke with one of the directors at school yesterday and we would be able to take him out, not pay, and not lose his spot. She said they would hate to have him gone though, since they all just love him so much. So it was quite a relief to me, one less thing to worry about!

Anyway, really not too much to report. We have his 18 month appointment in two weeks, and we'll just check his blood at that time. Thanks again to everyone for your continued prayers, cards, notes, etc. I'm still amazed by everyone's support.

Waiting for warmer weather

2009-03-30T12:38:00.000-07:00

Trenton saw his doctor again today. Tyler and I were really thinking that his count had gone up. He doesn't have as much bruising as he did last week, and his eye is looking better already (still pretty nasty, but better). So we were kind of surprised to find out that they are still at 8,000. We did learn one interesting thing, that he will bruise more easily in warm weather, something about circulation. Weird though, huh? So when he wears shorts in the summer, that's when he'll look the most beat up. Great!

The doctor is afraid he is becoming more chronic, because other coagulating functions of his blood are rising. But she's still hopeful that he will get better on his own.

The next drug to try is Rituxan, which is normally used for a type of lymphoma. Here I go with my limited medical knowledge: this drug is supposed to reduce the number of B cells he has, which would in turn decrease the number of antibodies there are that are killing off his platelets. But this would also very much compromise his immune system, so the doctor doesn't want to give it to him in the winter when he's much more susceptible to all kinds of other infections (especially being in day care every day). The side effects are things like nausea, headaches, fever, etc. No fun. Also, this drug has only been being used for about 5 years, so the doctors aren't in any rush to give it to him, since they don't know the long term side effects.

So, we are going to wait and see the doctor again in two months (unless needed sooner), and will get his blood checked periodically in there. If his counts are still low in two months, we'll probably do the Rituxan. But we are still hopeful that he will miraculously get back to normal on his own. We have his little red and white "stuffed" blood cells by his crib, wishing him the best.

Black Eye (PG-13)

2009-03-27T09:59:00.000-07:00

I hesitate to show this, but it gives you a good idea of what a normal fall looks like on an ITP kid. Trenton tripped yesterday at school and hit the corner of a bookcase. He was wearing his helmet, but maybe he needs to live in a bubble. The first two pictures are from yesterday afternoon, and the third from this morning. (and these ARE Tyler Jones Photography worthy, mostly because they were taken by Tyler)

Again, he's still happy as can be!

I bought him a t-shirt that says "you should see the other guy." I think that would be appropriate to wear for a while

Random Update

2009-03-25T19:54:00.000-07:00

I don't really have any new information, but I thought I would tell everyone that! We see the doctor on Monday and will hopefully then figure out what to do from here. We know his count continues to be low because the poor kid is just covered in bruises, especially on his legs. We brought him to the zoo and he wore shorts since it was so nice. He gots lots of looks, and I figured he must look super cute today! Then I remembered what his legs must look like to strangers. Oh well, he still looked super cute!!

Trenton hasn't really been feeling top notch lately. We think he's just got some bug, which normally we wouldn't worry too much about, but I think we are just on this heightened alert. He started to get these blood blisters in his mouth (which he had tons of before we were put into the hospital), so we started him on this medication that helped last time. But it can make him nauseous, and he threw up later. Tyler wanted to stay home on his birthday, and he got his wish! But I don't think he wanted to spend it cleaning up vomit. He's such a great daddy.

Our doctor was concerned when Trenton had a high fever and if he might have some kind of infection, but the fever slowly died down. Now he's just got some other junk that obviously is making him feel terrible. It would be nice if it was just the medicine, since we are done with it now. And the blisters are gone which is great.

Anyway, I thought I would share some pictures too. The Middle School Youth Group girls at church made Trenton the cutest blanket, and he just loves throwing it around and playing with it, so I just had to take some quick pictures with my phone (it's really not Tyler Jones Photography worthy or anything):

(he's actually in there somewhere hiding)

Thanks girls!!

8

2009-03-16T18:42:00.000-07:00

Trenton got his blood check again today. And again, he didn't even flinch. He was more excited about the puppy sticker on the chair. (and yes, he can even say "puppy!"). We decided not to wait around this time, and the nurse said she would call me with the results. We didn't even make it home before they called. I could tell right away by the tone of her voice that it wasn't good news. His count is still only 8,000. You may be thinking that it's increased, but really not. The doctor told us once that anything below 10,000 is pretty much the same.

I think I'm not as emotional after this one, because I was expecting it. Tyler thought the same thing, that last time we had some hope. But I've noticed more bruising this week, and he has the petechiae (the little red dots) all over his arm today, so I knew it was going to be low. So the doctor wants us to come in again in two weeks. We are afraid they will just want to wait, but they seem to change their minds on things after they have their team meetings, so we'll just to see what they say, and trust their expertise.

But thankfully, Trenton continues to feel well and really shows no side effects at all. He loves his helmet and has gotten pretty good at getting it on himself even. If only I could teach him to snap the button, we'd be good to go!

Pictures

2009-03-12T19:28:00.000-07:00

Sorry for the last entry. Can you tell I was a little upset? I thought I should have a more uplifting note today.

So this morning, Trenton was playing with this basket of toys quietly, and when I looked around the corner, this is what I saw (oh, and many of you wanted to see his helmet that we have this love/hate relationship with, so here you go):

Crap

2009-03-11T17:11:00.000-07:00

Trenton got his blood checked today to see if the WinRho started working yet. He was such a trooper, especially when we have Irene taking his blood, he doesn't even seem to notice. I ran into our doctor in the hallway and she said she would run down to the lab herself to get the results and then let us know (after she got a smile from Trenton).

So we hung out a little bit, roaming the halls, until a nurse came to tell us that his count hasn't changed at all. It's still at 5,000. This is extremely disappointing to say the least. She did say it peaks around day 7 or 8, so we will come back on Monday to check it again.

I was near tears on the way out, and then saw our favorite nurse. I think that's when I started to lose it. She is so sweet with Trenton and tried to get him to laugh. I just can't get over the staff at Children's. We couldn't be happier with everyone there. (Well, unless they could cure him of course). Once I got to the privacy of my car, I really lost it. The poor lady at the booth when you leave the parking garage, but I'm sure she's used to emotional parents. Later, I texted the family to give them the news. I think mom puts it best with her response of "crap." That pretty much sums it up!

New Drugs

2009-03-09T13:13:00.000-07:00

Trenton (and I) got through another treatment today. They checked his platelet count first just in case it was above 20,000. But of course it wasn't. He was only at 5,000 so they went ahead with the WinRho. It took about 45 minutes to get "ready," so Trenton hung out in the play area meeting other friends and played with this cool car. The infusion took about all of a half hour, which was great. He sat on my lap the whole time, mostly eating, but also watching Animal Planet and talking to whomever would make eye contact with him. We had an awesome nurse who just kept playing with him, making faces, etc. He was just giggling at her, it was really cute.

Then we had to hang out for a half hour to make sure he didn't have any reactions. He was running around the place like a mad man, so he obviously felt fine. We had to check his vitals, and the nurse let him hit the "start" button on the machine, and let him check his own, and my, and her temperature with the ear thing, so I think he's in love with her now. Then she took out his IV and we were sent home. They said he could get stomach cramps, and feel achy or kind of flu-like. But so far, so good! Although now he's trying really hard NOT to nap. But hopefully he will continue to feel good.

We will go back on Wednesday to get his count again, and make sure he isn't turning yellow. If he does, he will have to get some other medicine. So please pray he stays pink! Now the doctor said she would be happy with 11,000, so that's what we're shooting for!

Lows and Highs

2009-03-02T19:12:00.000-08:00

So Trenton's platelet count is down to 5,000 again. Tyler and I both knew it would be low, based on more bruising and stuff. But I think I was just hoping that I would be surprised. No such luck. We do get to wean him off the Prednisone though, being done with it within the week. Maybe I can sleep in past 5:30am, that would be cool.

We have another appointment for next Monday to go in again, this time for another treatment. We aren't going to do the IVIG that we did while in the hospital, since it didn't work at all. We are trying another drug called WinRho. I guess it's kind of the same thing, but not. Does that help everyone? Yea, me either. It is an IV thing, but it can still be done at the clinic, which is nice. There aren't too many bad side effects, but he could feel nauseous, and achy, so please pray that he handles it all ok.

If that doesn't work, we may just be told to wait a bit (a bit being months). The doctor still doesn't want to do the harsher chemo drugs, since they don't really know the effects of what it could do in ten years. And she said she's responsible for him for the next 100 years, so she really doesn't want to do that to him. So we really hope this does something to his count. We are sick of waiting, sick of bruises, sick of his helmet, and sick of not seeing his precious blonde toe head!

On a lighter note, I ordered Chili's-to-go for dinner tonight with a gift card I got (thanks boss), and I set Trenton down on a bar chair for a second to sign the receipt. Then I start to hear this crunching. I quick look, and Trenton totally stole a chip from this other guy's plate! Luckily, the guy was cool about it and just laughed, saying that of course he should take a chip, everyone else had some! I felt like such a dork, but still laughed the whole way home. It was a great release from the stress of the day.

back down

2009-02-24T18:12:00.000-08:00

Trenton had his blood checked again yesterday. We just went to Kaiser which is nice, it's usually a little faster and closer. At least they didn't call us at 10:30 at night which has happened a few times, but the doctor did e-mail me this morning saying his count was down again to 7,000. We are hugely disappointed, but were somewhat prepared for that too.

At our last visit with the hematologist, I asked the doctor what she would like to see his count be at his next visit. She said she would be happy with 50,000. But she would be half-happy with 25,000. Maybe she'll just have to be a fraction of happiness? We'll see.

So we do have another appointment this coming Monday and will check him again and decide what to do from here. Probably another round of the IVIG, which wasn't too bad, more frustrating for Trenton than anything, since he can run around in his normal fashion. But at least he could flirt with more nurses!

I want everyone to know how much we appreciate your notes, cards, e-mails, etc. We just got a card in the mail today, and I just felt so taken care of. I am saving everything I can for Trenton to show him later. I want him to know how loved he is, and how much people cared about him. So, thanks.

9,000!

2009-02-17T18:52:00.000-08:00

So we checked in today at the front desk of Children's Hospital, we usually give them our names and they look up our driver's license, blah blah blah. But, when you come on a regular basis, you get fancy laminated nametags so you don't have to check in each time. I guess we are official now!

Trenton went through his regular workup, he's getting quite good at it! He actually let them put the pulse ox on his finger (this is the worst part of the whole process for him)! Then they did the finger poke to get some blood. He didn't even make a sound! He was just sitting on my lap playing with this silly toy. Then he kept trying to lean over so he could watch the lady put his blood in the tube. He was quite fascinated by the whole thing.

After some waiting in our room, cute doctor tells us that Trenton's platelet count is 9,000. This is still super low, but at least he's headed in the right direction. They checked him out a bit, inspecting new bruises he has and looking in his ears, etc. He was so funny through the whole thing, just smiling and laughing at anyone who would look at him. Dr. Jones (really, that's her name) said he made her day with his smile! At one point, cute doctor was looking in his eyes with the light, and getting in close. Trenton just kept leaning in smiling, I thought he was going to give him a kiss! Our doctor said she has never seen a 16 month old act so happy through that exam.

So, we will continue with the Prednisone for two more weeks. We'll get his blood checked at Kaiser next week and then see the Hematologist again the week after that. If his count is at 50,000 or above, she'll wean him off the Prednisone and see how he does. If not, we may need to do another round of the IVIG (the infusion he did while in the hospital). She thinks that he really didn't get a fair shot at that working last time, since he had the bronchiolitis at the same time.

She still doesn't want to do anything really aggressive to his little body, just take precautions and let him work it out. She acknowledged that it feels like they are dragging their feet, but they just don't want to give harsher drugs (like chemo) to him yet. We appreciate that she said this, since we feel like we are just told to wait all the time. We are sick of waiting. But, we are getting quite good at it now.

Helmet

2009-02-15T14:13:00.000-08:00

So we got Trenton a helmet this past Thursday when we were at Children's. I really hated it at first. I think because it's just this constant reminder that something is wrong. Also, it looks pretty funny. But I have to admit it makes me feel better when he wears it. He wore it at school on Friday and most of the weekend. I think he's getting pretty used to it! His friend even wanted to wear it when I gave him a break from it. I think that helped. So we can let him run around with his usual craziness, and don't worry so much about him falling down every 2 minutes.

He still seems to feel pretty good. The blood blister on his mouth looks MUCH better, so he doesn't look so beat up anymore. He still has his black eye from over a week ago, but it's a light purple now. It still looks like he got a hold of some eye shadow and just went to town.

We are starting to see that side effects of the Prednisone. He gets a little cranky in the evening, and doesn't sleep very well. He was up and ready at 5:30 this morning! But we'll take it if it means his platelet count will go up. We'll know more on Tuesday when we see the Hematologist again. Stay tuned!

Random Pictures

2009-02-12T18:44:00.000-08:00

Trenton giving his new elephant a hug
(before he threw him across the room)

We were on the Oncology/Hematology floor at Children's, so Trenton was quarantined to his room because of the RSV. They let us go outside one day, but he had to go out like this.

Daddy just having fun with his camera, showing off some of Trenton's bruises

Trenton having fun with bandanas while helping mommy clean

Background

2009-02-12T15:49:00.000-08:00

We decided to start this for those of you who want to keep update on what's going on with Trenton. We send out occasional e-mails, but we aren't always sure who cares!

So, how this whole adventure started. In December, I noticed Trenton had blood in his poop one day. When it happened again, I called the doctor and she wanted us to come in. While getting him ready, we noticed all these little red dots all over him. Not thinking it was related, we figured we'd ask them about that too. Well, we discovered they are related. After getting checked out at the after-hours clinic (it was a Saturday), we were sent to Children's. That's where we were told he probably has ITP, which basically means he has a low platelet count. At that time, he had about 12,000 platelets (normal is 150,000-450,000). We were given Prednisone for two weeks. That brought his count up to 30,000. After we finished, it went back down to about 10,000.

We started getting Trenton's blood checked typically every week. It was continually very low. He was such a trooper through the whole thing, the nurse taking his blood said he did better than some adults!

One day we got it checked and the doctor called us at 10:30 at night to tell us his count dropped to 3,000. It's never good when a doctor calls you that late. She tells us to watch for fevers or bone pain. How do you ask a 15 month old if he has bone pain?? Well, a few days later he developed a high fever (and had a nasty cough). So, to the ER we went. After many tests, it was discovered that he had RSV (and still crazy low platelets). So we were admitted to the hospital at about 3:30 in the morning.

They wanted to try this other treatment called IVIG. It's an infusion of antibodies that's given through an IV and takes about 4 hours. We did this two days in a row. They said it can take about 5 days to show an increase of platelets, but that it works in 90% of kids. When they finally discharged us (with oxgyen because of the RSV), it still hadn't shown any increase.

When I brought Trenton to get checked the next week at his normal doctor, the doctor called and was excited that his count went up to 18,000! Woo hoo! Well, we discovered later that it really only went up to 10,000. But the doctor was still happy because it was an increase. A week later, the doctor calls again at 10:30 at night (what's with that?) and tells us he was back down to 3,000. That's when we were introduced to the Hematology doctors at Children's. The doc was concerned about why his platelets hadn't gone up after the treatments he's had, so she wanted Trenton to get his bone marrow checked. We did that last week, and all is well. So there's no worry about leukemia or anything. She tells us to wait 3 weeks and then we'd get checked again and then decide what to do.

Well, he had two nasty falls this week and we brought him into the clinic again today. He has this nasty cut on his lip that just won't stop bleeding. They gave us Prednisone again and another med that's supposed to help him with the bleeding. We'll go back next week to check his blood again.

Until this week, Trenton has been feeling great. He is so happy and crazy and playful (which is why he has so many bruises). So we are so grateful that this hasn't been something that makes him feel bad or anything. Of course now, his lip hurts. But that should heal soon I hope.

We've been amazingly supported by friends, family, coworkers and church. We thank you all, and have never felt so loved. Trenton is our world, we never realized how much we would love this little guy, and it kills us to see him suffer. So everyone's support has been much appreciated.

If you really care about what ITP is, Google it, or go to: http://www.pdsa.org/itp-information/index.html