You know we have been in an inversion too long when....

This morning on the way home from taking Roman to school

Hudson - Mommy, I can't see you.  The light is too bright.  Turn it off!
Me - Hudson, that's the sun, I can't turn it off.
Hudson - No, that's the light, it's too bright.  Turn it off!
Me - Hudson, look, it's the SUN!
Hudson - The sun NOT that bright!  It's a LIGHT!

Yep, definitely been stuck in the smog way too long when he won't believe me that it's actually the sun shining!

Hudson's commentary on my driving

This morning there was freezing rain, and to say the drive to Roman's school was slippery was an understatement.  We saw at least 10 accidents on the way to his school, yet for some reason I still decided to stop at Sam's Club to grab a few things on the way home.  As we were finally on our way home we were very slowly driving up a slight incline, traction control going crazy on the car trying to keep us from slipping backwards.  From the back seat I hear Hudson:

Hudson - Mom, I'm a little bit scared from your driving.
Me - Hudson, I'm a little bit scared from my driving too.
Hudson - Oh.

New beds

Roman got an awesome amazing bunk bed for Christmas....and he chooses to sleep on the floor.  He slept in his bed until 2 night ago, now he chooses to set up blankets on the floor to sleep on.  He has never fallen off or anything, not sure what this is about.  I hope he decides to sleep in his bed again soon.

With Roman moving to a bunk bed, Hudson now has the toddler bed.  He wasn't sure about it the first few nights.  We would ask him if he wanted to sleep in the toddler bed, and he would decline.  Finally after a few nights I decided to put his boppy (he still sleeps with it as his pillow) and his monkeys in the toddler bed, and he decided to sleep in the toddler bed that night.  The first few nights he went back and forth on which bed he wanted to sleep in, but after 2 weeks he decided that it was okay to take the crib down and hasn't looked back since.  He LOVES sleeping in the toddler bed, and doesn't get out at all, even in the mornings, he calls for us to come get him up, as soon as we come in and tell him he can get out of bed, he does, but he stays in bed otherwise.  He is our great sleeper though.  He loves naps and still takes 2-3 hour naps in the afternoons and asks to go to bed if it's past bedtime and is still up. 

Things they say

I have been horrible about blogging over the last year and a half.  I have wanted to record all the fun things the boys say somewhere so I can put them together in a book and thought about starting another new blog, but decided this was a great place to post.  It really is all about every day with these crazy boys.  I will start doing many small posts, just a picture here and there, a silly/funny thing they say, all the fun things that happen in our life every day!  I am always shaking my head at the things they say and hope they will enjoy it all as much as I do when they are all grown up.  

This happened this morning:

So to start I'll post the most recent conversations I've posted on Facebook.

On the way home from taking Roman to school.

Hudson - Mmmmmm...This is good. But I tink (think) it might be bad.
Me - Uh, what is good?
Hudson - Ummmmm. This crumb.
Me - What crumb?
Hudson - I finding them in my car seat.
Me - Eew, don't eat crumbs out of your car seat!
Hudson - Oh. Yeah. I tink they might be bad to eat. (starts spitting)

UGH! Time to clean out the car seats!



Yesterday:

Roman - mom, can you help me put Blueberry's slippers on?
Me - sure, who's clothes are those?
Roman- they are Ryder's can you help me put those on too?
Me- yep, go get Ryder. 
Me- roman there's still an extra pair of pants here.
Roman- oh those must be Odessa's.
Me- *sigh* go get Odessa then too.

Its sad that we talk about all the build-a-bear animals using their names, like they are part of the family.

And also from yesterday

We were watching Electric Company and one of the singers is heavily tattooed and roman asked "why did that guy let someone draw all over his neck? I think he needs a shower or something."

Festival of Trees

--- UPDATE ----

Because of all the craziness we've decided to wait until next year to do a tree in Roman's honor.  With all of the hospital bills and so many things going on in our lives this year we decided it would be better to wait until next year when we have a little more time (and money) that we can contribute to this cause.  We still want to do it, but feel it will be better next year!

-----

This year we would like to decorate and donate a tree in Roman's honor to the Festival of Trees.  We would like to do this to help create a positive experience from Roman's hospitalization (a friend's sister suggested this, then my friend said we were totally CRAZY for doing it, but here goes the craziness!)

We are planning to do a 4th of July tree since this craziness all began on the 4th of July.  I have a lot of fun ideas (but of course they are going to require funds) so this is where YOU can help.  Everyone keeps asking if there is anything they can do to help, please help us with Roman's tree!  There are several ways you can donate, I have added a donation button on the right toolbar, it is linked to my paypal account, I can accept donations in person, or if you have new items you would like to donate, to me with items to add to the tree.  Festival of Trees is particular that all items must be new and they have very specific rules (non-flammable, non perishable, etc) If you have any questions, please feel free to ask.  (I am still figuring this out, so I am sure there are several things that I am forgetting here!)

P.S. Roman had another visit to Primary Children's hospital on Tuesday, I will post about it later today (hopefully!)

Nephrology Appointment

Today we had Roman's first clinic visit with Nephrology (the Kidney doctors).  All around it was a great appointment.  

Here's a brief run down of the good news we got today!

- Kidney function up to 40% (It was at 30% (actually today they said 27%) when he was discharged from the hospital.)

- Sodium level was LOW so we don't have to cut it out anymore.  Still need to make sure he doesn't have too much, but it's okay for him to have crakers, pretzels, etc.

- Potassium and phosphorus levels still PERFECT.  They said it would be okay for him to have a little potassium, 10 or less fries, a slice of tomoto is okay, a few pieces of cantaloupe etc.

- We only need to go in every month now for blood work instead of every week. (Except they want us to go in again next week to make sure he doesn't get another infection when he stops taking the antibiotic from the infection last week)

- He can now sleep 6 hour stretches instead of 4 at night so we only need to wake him once at night to go to the bathroom.  The doctor said "He's probably okay to sleep all night if it's only 7 or 8 hours."  When I told him that Roman slept 11-12 hours most nights he said "Yeah, you are still going to have to get him up at night then." Seriously, what 5 year old only sleeps 7 or 8 hours?  Or does Roman really sleep a lot?  I always thought that was normal.  

- We were given the all clear to travel and the nephrologist said they are okay with him going back into swimming lessons, (he did say that the urologists were the ones that recommended 6 weeks healing before he starts again, so we should wait for the all clear from them before he starts again, but they see no reason why he can't swim.)

- The dietitian is FABULOUS and gave us so many more ideas and was so positive about how we are doing with his diet modification.  She said most people have much slower improvement because they struggle more with the diet.  

After his appointment we went and said hello to Odessa (the child life specialist) and went to see Lacey and McCall but they were both off today.  We'll go back again in a few weeks when we go to the urologist and say hello if they are there.

Finding our new "normal"

The last few weeks we have been trying to find our new normal.  Figure out what Roman can and can't eat.  Trying to help him heal as much as he can, and trying to adjust to being at home after spending a week and a half in the hospital.  He learned in the hospital that he could scream, squeal and throw a fit and get whatever he wanted.  That was a bad thing when we got home and he would just squawk when he didn't get what he wanted.  Add to that he asks for an old favorite food only to be told "I'm sorry, you can't eat that anymore, but here, have another glass of water."  Oh and "You need to go to the bathroom, now let me watch you go."  It's been all sorts of fun here.  We are finding a new normal though and I have to say, it is getting better.

We have been going in every Tuesday for Roman to have his blood drawn (and the last two weeks they have also done urine tests) to check his kidney function.  The number we have been watching the most closely has been the Creatinine level, which has been slowly going down.  We also need to watch his BUN level, which unfortunately isn't going down as much as the creatinine level.  We are also watching his potassium, phosphorus, and iron levels.  The first week things hadn't changed much, it was only 3 days after he was discharged from the hospital (creatinine level 1.20, phosphorus and potassium normal), and the levels had basically remained unchanged (Creatinine level of 1.21, potassium and phosphorus normal range).  The next week his creatinine level was a little higher (1.28) and his potassium was high.  I was beating myself up because we have been trying so hard to watch everything he eats.  I did some learning that day.  Apparently he can have canned peaches but not fresh because fresh have too much potassium which is probably why his creatinine level was high too.  So we worked on improving diet again, started researching everything before we fed things to Roman (and called the dietitian a few more times) and were hopefully back on track.

We still have to wake Roman every 4 hours at night to go to the bathroom.  Last Thursday night (July 26) I went to a baby shower.  When I got home Spencer told me Roman hadn't gone to the bathroom much before bed so he asked if I would take him again.  I took him again, but he didn't really go much then either.  At 3:30 I got up with him to go to the bathroom and he said he couldn't pee.  I finally told him to try one last time and if he couldn't pee we'd just take him back to bed.  He tried really hard and got a few drips out. But it wasn't pee.  It was blood.  Spencer and I were both in the bathroom by this point, we looked at the blood, each other, and decided I better take him up to Primary Children's ER.

We got up to the ER just after 4:00 am.  They decided to test his blood just to check his kidney levels again, they called the urologist and the nephrologist.  The urologist asked that they do a urine test as well and an ultrasound of his kidneys and bladder.  We took Roman to the bathroom and asked him to try to pee again, but not to push if he couldn't.  He was able to get a little out, and went several more times while we were there.  He was passing some blood clots in his urine.  They sent us for the ultrasound and they said it looked very similar to the previous one (from the first day he was in the hospital when he was admitted), the ureters were slightly less dilated)  The radiologist showed me his bladder on the screen and how rough and think it was where it should be smooth.  She also showed me the damage they were looking at on his kidneys (they are thinner in the areas that are damaged).

They had us wait until Roman's doctors were there (at 7) then we had to wait for them to make their way down to the ER to see him.  It was the same urologist we saw the entire time we were which was nice because we didn't have to explain everything again.  The good news he gave us, his creatinine level was now at 1.14 (so down .14 in just 3 days) and his potassium level was again in normal range.  The urine culture did not show an active infection in the urine but there was some bacteria.  He was on a prophylactic antibiotic to try to prevent an infection but with the bacteria and everything else looked good it looked like he had an infection in the valve he had surgery on.  More good news, he just needed a stronger antibiotic and we could go home!

We go back to his kidney doctor tomorrow, so I'm hoping we'll know more after that.  I have to remind myself that even though his creatinine level has improved so much there are other things that factor into kidney function (his BUN level is still very high) and they aren't improving like this the creatinine, potassium and phosphorus levels, which means we are doing a good job with diet, but his kidneys are still struggling.

This week has been a week full of appointments.  Monday Roman got to go to the pediatric dentist.  He had his teeth cleaned on July 3 (so the day before he went into the hospital) but because of the amount of iron he is taking his teeth were grey and black.  Thankfully Dr Jared was able to clean it right off and said that we can come in as frequently as we need to.  Probably every few weeks for now.  While we were there Jared gave each of my boys a stuffed animal.  He gave Hudson a duck (actually it's not a duck because it doesn't have wings, Jared explained to me that it's called a google).  Hudson named it "Puffy" and it's his new lovey.  He takes it everywhere, sleeps with it, he loves Puffy.
Roman got a polar bear that at first he was planning to name Polar because Hudson had named his puffy, but he changed it's name to Bear Lee the Bear.  (He thought he was funny.  He said then if anyone asked "Barely what?" he can cay "Bear Lee a bear.")


On Tuesday we had to go in to have Roman's blood drawn again then that afternoon we had his "well child check-up."  We have had it scheduled for months for both of our boys.  Hudson is back on the growth charts for weight!  We were very excited about that.  He now weighs 24 lbs 11 oz (11%) and is 32.25" (10%).  He has a HUGE head though (88%!)  Roman had gained 5 lbs since we were discharged from the hospital, but he is still small all around for his age (4% for weight, not even on the chart for height (38.75")) Our doctor was able to tell me the results from his blood work that morning and his creatinine level was down to 1.02, phosphorus and potassium within normal range.  BUN level still 33 (which is high).


Yesterday Roman got the nicest card in the mail.  It was from several of his nurses up at Primary Children's hospital.  I can't say enough great things about the care Roman received there.  I am sure the nurses tell all the kids they are their favorite, but Roman just LOVED the nurses.  It's been almost 3 weeks since we came home, and it was so sweet to see their notes to him.