Rogers Family Christmas Party!

Dans family knows how to throw a party! This was the grand finale of the annual talent show. Oh I WISH I would have gotten a video of "The Ro Bros" performing their talent! Dan was lead vocal and guitarist, Noah on piano, Jake on drums, and Hunter on Violin. I was soooo impressed and soooo proud. They ROCKED!

C is for ... Cavernous reCanalization with Collateral veins

Where do I start .... in July of this year Noah had an ultrasound where the radiologist determined his clot to be resolved. Unfortunately that same day, they also determined that he had an appendicitis. So he went to surgery. Because of the surgery, he also went off of anticoagulation medication.

Then about a month or so ago, Noah had an echocardiogram. The cardiologist was concerned about something he saw and recommended we do an abdominal CT.

So last week we had an abdominal CT done. The results were SUPRISING. Cavernous recanalization of the IVC with collateral veins. What does this mean???? The way the radiologist described it to me was that his IVC was essentially gone and there were little veins that had grown all over in his abdomen to compensate for losing the Inferior Vena Cava.

Unfortunately I dont what the ramifications of this will be. First of all, the question I have is .... did a new clot develop in the 2 weeks that he was off coumadin OR did the radiologist that read the ultrasound in July get it wrong. This is important to know because in April next year another doctor plans to try to take him of anticoagulation therapy. My second question would be.... what will this mean for him in the future? Will he always be tired? Will he always have abdominal pain and chest pain?? Will I ever post about anything other than Noahs health issues again??? HMMMMMMMM :)

The Doctor Says.....

I feel "mixed" about the Denver trip. They didn't do alot of extra testing like I expected them to. The only test they could think of that hadn't been done already was a blood test for Paroxysmal Nocturnal Hemoglobinuria (PNH), which seems pretty unlikely to me to come back positive. We'll see!

The doctor classified what Noah had as a "Thrombotic Storm" and entered him into a Genome Research Study (more information at http://www.stoptheclot.org/News/article181.htm ). We won't get any specific info back on Noah, but if it helps in the research process, great.

Hmmmm..... what else?? So I guess we just go back to taking Noah to Primarys with any new and unusual symptoms and hope that eventually we will either figure out what his diagnosis is, or he gets better.

Headed for DENVER!

Bright and early tomorrow morning the boys and I are heading to Denver so Noah can see the hematologist/thrombosis specialist out there. He seems to be doing fairly well for that last few weeks. The only real update is that we took him in a couple weeks ago for a follow up echocardiogram for a dilated aortic root. The aortic root was about the same, however, the cardiologist said he peaked at his IVC (where the clot 'was' but apparently had gone away), and he thought that it "might be back". I wasn't sure what to do with that information except wait for Denver. So hopefully this doctor will not only tell us if the clot has actually come back, but also what in the heck is causing it!!!!!!!! Please, everybody pray that we'll have a safe trip and that we'll come back with some answers.

Annual Haunted House

Have you EVER seen SPOOKIER gingerbread than this????? BOO!

Thanks Tonia!

Hanging out with the Korth's

We all had fun hanging out with the Korth's. See Sheia's post about my good looking Hubby.

http://allmyks.blogspot.com/2010/09/just-for-dan.html

JACK JOHNSON CONCERT

Last Friday Dan's sister called us up and asked if we wanted to go with them to the Jack Johnson Concert.....so we DID. The end. (Just kidding - If you want to see photographic evidence you have to go look at my SIL's blog; CRASH TEST DUMMIES. The link is on the side bar. :)

Canada - Photographic evidence

OH Canada!

Havin' a great time with my little sister Jami and her family. Photographic evidence is yet to come..................................................as soon as I figure out how to download stuff on her computer. See ya all later, EH!

Soooo the good news....

Update on Noah:

The Good News: Today we took Noah in for an ultrasound to check the progress on his IVC Thrombosis and there has actually been some progress. He now has some flow through his inferior vena cava where there previously was none.

The Bad News: Last night Noah started vomiting alot, so after he had his ultrasound today, Dr. Bhonsack did his assessment and sent us back down to ultrasound to look at his appendix. Long story short - Noah just got out of surgery for an appendicitis. Originally when I found out, I thought maybe it was a good thing. Maybe this has been going on for months now and was causing some of the weird symptoms he's had. Unfortunately, the surgeon does not agree. She said his appendicitis was a stage 2 and has probably only been there for a day or two. Anyway, we are at Primary Childrens again, hopefully just for a couple of days.

Update on NOAH!

It's been awhile since I've given an update...so here it is. A few weeks ago, Noah woke up with a 104 degree fever and a large puffy lump on his face. We took him to the ER and they thought perhaps it was an abcessed tooth. We treated him with antibiotics and the fever and swelling went away. That week while he was on antibiotics he felt GREAT. (Had energy, overall swelling went down, etc.) BTW: We(Dr. Bhonsack and me) don't think he actually had an abcessed tooth. Not really sure what it was.

Anyway, last week we had labs re-drawn to check sed rate and crp (which had been going back up since stopping steriods). They are both back to normal. AWESOME.

We also re-checked the labs for Antiphospholipid Syndrome. Remember this is the "soft" diagnosis they gave him but had to recheck later and have a positive result to confirm diagnosis. Well, guess what ... the results were NEGATIVE. So the originally "soft" diagnosis for this is now more like "ooozy goozy runny - not really likely at all" diagnosis. Big suprise! ;)

So, this weeks labs were MOSTLY normal. However, his White Blood Cell count this week is low. (WBC:3.0, should be between 5-10ish) What does this mean, you ask? I DON'T KNOW WHAT THE !$#^@!&^#%$ THAT MEANS. NOBODY DOES! We just have to keep waiting and seeing. :(

So how is Noah feeling... Sometimes he seems okay. But alot of the time lately he seems VERY TIRED, DECREASED APPETITE, AND HE LOOKS LIKE THE ANEMIA MIGHT BE COMING BACK (PALE SKIN AND LIPS).

I talked to his doctor a couple days ago and we are going to move up the next ultrasound to look at the clot again. So that will most likely be next Tuesday.

So, How am I doing, you ask?
I am very very close to completely LOSING IT! Maybe it's because of the "Noah" thing, OR the not working anymore thing, OR maybe it's my marriage, OR could it be the NO money and lots of bills thing, OR maybe my current "lack of faith" thing. I'm not sure, I just can't seem to put my finger on it. Whatever it is, just know that asking me how I'm doing, may open up a BIG 'OLE can of gummy worms that you just were not expecting. So proceed with caution. :)

Workin' up a sweat!

The boys have been doing odd jobs around the neighborhood for the last couple weeks to earn money for SCOUT CAMP. It's probably wrong of me to get such pleasure out of seeing them work so hard...but I just can't help it. I LOVE to see them sweat. Hunter and Jacob left today for camp for the whole week. (I'm not sure how their "Mommy" is going to make it without them.)

CON"GRADUATIONS" HUNTER

Hunter Graduated from Elementary school today. Hunter was voted "Best Friend" by his classmates.


Hunter with his best friend and Noah. Hunters best friend was the valedictorian and gave a great speech.


Hunter and Mom.


Grandma made Hunter this awesome candy lei. (That I have already starting begging Hunter to share with me.) :)

GOING TO DISTRICT!

JAKE IS DETERMINED TO HELP ME GET THE VACATION I'VE BEEN DREAMING OF FOR OVER A YEAR NOW. HE SAID HE WAS GOING TO WIN THE 800 METER DASH AT THE HERSHEY TRACK MEET AND GO ALL THE WAY TO NATIONALS SO I WOULD HAVE TO TAKE HIM TO HERSHEY, PENNSYLVANIA. WELL, HE'S OFF TO A GOOD START. HE IS GOING TO DISTRICTS, SO ALREADY HE HAS WON ME A TRIP TO .... I'M NOT SURE REALLY, EITHER SPANISH FORK OR PROVO. WHOOHOOO JAKE, KEEP UP THE GREAT WORK.

Cookie Biz!

Noah's in the cookie biz. He has decided he has way too much time on his hands now that he's not in school and can't really go outside and play much. So he made up some fliers and sent them around the neighborhood and waaalaaa, cookie biz. He's lovin' it. He sold a bunch of cookies on his first day (yesterday). Although he likes the actually cookie making, I think his FAVORITE part is putting all the numbers into the excel spreadsheet he made. Like father, like son I guess. :)

HOME AGAIN - HOME AGAIN

Let's see... where to begin. We brought Noah home from the hospital on Tuesday the 13th. We were excitedly apprehensive. We still had no clues about what caused the clotting, and he was not really feeling any better than when we took him in on the 2nd.

A few days before we left the hospital his headaches started up again and got much worse the first day we got home. Dr. Bhonsack, the doctor everyone said was super smart, was not aware that we had been sent home and called as soon as he found out to see how we were doing. I told him that Noahs headaches were getting worse and he suggested that we should take him to the ER at Primary's if they got any worse. The concern was that if the original clot in his brain had caused the initial headaches, then maybe he was having more clotting in his brain with the presence of more headaches. (I'm typing fast so let me know if I'm losing anyone.) Of course, this was very concerning to me, so the next day when his headaches became worse and his face started swelling more, I took him back to the hospital. They kept us overnight and did a CT angio of his brain as well as an MRI. They found no evidence of new clots so they felt comfortable letting us take Noah back home.

At this point, all of the test results are in and the verdict is...... well, there is no clear verdict. However, they did get a positive test result. One of the initial tests they ran is called a venom viper test. This test is for ANTIPHOSPHOLIPID SYNDROME. This test result came back slightly abnormal(not really abnormal, just a hint of abnormal). Since they didn't find much else to hang their hats on, they ran some further tests to consider the possibility of ANTIPHOSPHOLIPID SYNDROME. Several secondary tests were run. Of these, one test result WAS positive. Sounds great right. Well not really. The one positive test result has a disclaimer. If this lab test, HEXAGONAL PHOSPHOLIPID NEUTRALIZATION, is done on a blood sample of a pt who is within the therapeutic range for heparin (which Noah was on the day the test was drawn), then the possibility of a FALSE POSITIVE is GREAT. (According to the literature the doctor gave me.)

So what does this mean for Noah. It means the Rheumatologists decided to start treating him with immunosuppressant drugs (steroids for now). Although I believe they are treating him for the wrong thing, the drugs really seem to be working well. This is probably because his body was having some kind of ACUTE INFLAMMATORY RESPONSE and corticosteroids are an anti-inflammatory.

I know this probably all sounds like a bunch of rambling. I just need to get it all off my chest, and this is my way to process it. I do have a new theory.... not sure I should say or not, but really, what the heck. My new theory is....no, I'm not going to say. But I am going to ask the doctor about it on Tuesday.

Long story short. WE ARE HAPPY TO BE HOME AND ECSTATIC THAT NOAH IS FEELING A BIT MORE LIKE HIS HAPPY CHEERFUL SELF.

Saturday Night

Hey, I'm at home tonight with Hunter and Jacob. Dan is staying overnight in the hospital with Noah. So I took the opportunity to post some of these cute pictures of Noah with all his visitors. I think the only people I didn't get pictures of are Melanie and Chads family, Sheila, and Janica and Madison Hillesheim. As you can see, Noah really loves to have visitors. Today he started out looking pretty low, and then Hunter, Jacob, Dan and Sheila showed up and he was a totally different kid.

I don't have any new news. Things are pretty much the same. I did hear a rumor from one of the nurses that they might be sending him home on homecare services on Monday. We shall see. In some ways that would be really nice. On the other hand, it could also be really scary. We will see. Love you all. Goodnight.

Even more hospital pictures

More hospital pictures

Hospital pictures

Honest and Upbeat

It's hard to know how to strike a balance between being honest here about how Noah is really doing and being upbeat and positive about the whole experience. But I'm gonna take a crack at it tonight. You can tell me how I do. Tonight is our one week annivesary of being in the hospital. (more specifically in room 3038). Noah and I have both decided that it's not the most fun we've ever had. It's almost midnight and what he wants most right now is just to go outside and get some fresh air. I told him that if the weather is nice tomorrow we WILL go out side to the "angel garden".

I wish I had an idea about noah's progress or prognosis, but I really don't. I think at this point they have a couple more shot in the dark tests and then they just say "well, this is one for the medical books". As of right now they are treating him with lovenox and hoping that the clotting will start to resolve. So far there is no evidence that it has. They also drew blood cultures tonight because he continues to get fevers xnd they need to make sure he isn't septic. (infection).

How am I doing so far?

I'm guessing maybe good on honest, not so good on upbeat. Just wait..... It's coming.

It always amazes me how generous and compassionate people are when we are in need. We are so incredibly humbled by everyones love, support, prayers and fasting, and willingness to help in any way they can. We are so grateful for our family and friends who have helped take care of hunter and Jake. And for those who have come to visit us in the hospital, and for the meals and phone calls and messages of concern and for all of you who are praying for Noah and our family. As hard as it is sometimes to go through trials, it really makes it easier to know we certainly are NOT alone.

Love ya everyone, goodnight.

Update on Noah 2

Noah seems to be slightly improved today. He hasn't thrown up today. He hasn't eaten much but seems to be tolerating what he does eat. He is definately in better spirits than yesterday.

As far as diagnosis, nothing new. The few things they thought they had found out yesterday, they actually took back today and said they were wrong. Today they took him for a short walk down the hall and tested his oxygen levels. They were low as he walked. So tomorrow they will do a CT angio of his chest to see if he has clots in his lungs as well.

Sounds like the plan right now is that he will come home with a feeding tube until he can gain weight and lovenox shots for 6 months at the very least. They will decide if they are comfortable sending him home with basically no answers and follow up outpatient. This also depends on if I'm comfortable bringing him home with all these problems and no answers.

I guess at some point I'll decide it's okay to have no answers, but today is not that day. :(

Update on Noah

No progress on what did cause the clot. Plenty of progress on what did not cause the clot. Unfortunately no one knows what is going on. They don't know why he's having fever, nausea, vomiting, anemia, weight loss, etc. They don't think the clot explains it all, must be underlying problem. He did seem a little bit perkier this morning, until they put a feeding tube in. Now he's just mad. (they told him it would feel "uncomfortable". Apparently it's not just uncomfortable. It's PAINFUL.

Thanks for everyones love and support. We are grateful for all of you!

Ps. I will try to keep updating either here or on facebook.

Thanks Easter Bunny

So Noah, as some of you know, is at Primary Childrens Hospital. He has been sick for the past two months and we couldn't figure out why. Two days ago we had an abdominal CT done and discovered that he has a blood clot that runs from his inferior vena cava down to his kidneys. We are waiting for test results to figure out a cause. As of right now it appears that he has all of the specialists scratching their heads a bit. Anyway, he is stable for now. He's just very tired and nauseated and keeps spiking a fever.

I'm so thankful to all of our family and friends for your love and support. Aside from being sick, Noah has enjoyed all the visitors and gifts and love from everyone! It felt like we have had little Easter bunnies dropping by all the time bring gifts and fun. And especially thanks to the Easter bunnies mom for filling in today!

Basketball Season

Go Cardinals! ...... (at least until they play the Vikings)

We decided, on a whim, to drive down to Arizona for the Cardinals game this weekend.
Dan is what I would call the President of the Kurt Warner Fan Club. I swear to you he knows every stat in Kurts' portfolio.
The fans in the stadium were soooo loud. The screaming was non stop, just like the touchdowns.
Betcha didn't know.... I use to live here. This is Flagstaff, Arizona. My younger sis, Tonia, was born here. So I guess that means I lived here when I was one or two. Of all the scenery we saw in Arizona, this was definately my favorite. I just don't think I'm a desert girl at heart.