spring? are you there?

Apparently not considering we got about 6" of snow today. It was pretty, sure, but this family is ready for spring.

For a quick update on Grayson, he's doing okay. He actually went to school today for the first time in over a week, and although I told his teachers a bazillion times to call me as soon as it got to be too much, for him or for them (diaper changes are nearly a two person job still) and I was surprised to not get a call (don't worry, I checked in via email a few times) until about 315 or so. And, they weren't kicking him out, just letting me know that he was getting pretty tired and needed visits from Connor to perk up every so often. I picked him up shortly after.

He still is pretty nervous about sitting anywhere but if you get him distracted enough, he seems to forget it doesn't feel great to sit down. Bottom is still sore as he's still having very frequent bowel movements, hence hating diaper changes and I'm sure his incisions are still sore a bit, too. But, we're hoping every day continues to get better and we have more and more moments of our 'normal' little guy!

right where we belong

We're home! We got home about 8PM last night, actually. We figured there wasn't anything happening at the hospital that I couldn't do at home, so they let us out. I kid you not, Grayson was a different kid as soon as we got into the car, he didn't stop talking the entire car ride home (I might go as far to say it was too much? ha).

He's still in a lot of pain going the bathroom, but we'll keep him on miralax and I'm hoping he digs the chewable tylenol I picked up today because after we forced some in him last night, he seemed to be in such a great mood. We go back to the doctor on the 15th for a follow up and to see what's in store. We're certainly wishing the road ahead is a bit better than what it has been with Connor, but only time will tell.

Thank you all again for all the thoughts and prayers, they kept us going!

Now, back to the finishing touches of the superhero party taking place here tomorrow afternoon :)

Sorry no pictures, but I do vow now that I've got the blogging itch again, to keep this up!

Happy weekend!
Christy

one more day for superman

Well, the doctors were just in for their rounds (normally the nurse comes and gives me a 1-2 minute warning, but better than none, today I woke up and they were all standing there). His primary surgeon wasn't here (the one who meanly (kidding....) gave us the glimmer of hope that we're coming home today). My biggest concern with Grayson is how much it hurts to pee. You're all probably confused, we came here for a poopin' thing and we're having issues with peein'... Well, here's some awesome TMI, he needed to essentially be re-circumcised at some point, no cutting involved, but that's what the doctor offered to do while he was under. Granted, had he not done that, we'd probably go home today, but, saves us another trip under anesthesia, etc., so, it was worth it. But, now you know. Any guys out there, you can probably relate to how much pain he's in...

Goals today will be to woo the doctors with how good we're doing eating, drinking, pooping and peeing. Who knows, maybe they'll let us go home tonight, but it's really okay. I would rather his pain be less before we bring him home.

So, no pictures from up here, he's still sleeping, but I'll leave you with this one, courtesy Jen Meneghin Photography. Love my little superman.

our little monkey

More good times today! We've been waiting to dig into the bucket of toys that Kate and Miles gave Grayson before surgery, we waited until Grayson was peppy enough to want to do it himself.

So happy about the bucket!

First bag were these fun monkey glasses, he of course wanted to try them on right away.

Next bag, a football!

We saved a handful of the bags until tomorrow...just in case we're here longer than we want to be so we have a few more things to keep us entertained.

Talking to dad! See video below for live action from the call. And the phrase you probably can't understand is 'chocolate milk'

Always has to wear his hats backwards.

 Being silly with dad and the hat.

Still very painful when peeing and pooping, but otherwise, pain seems very under control. They've unhooked the IV (still in his arm, but no longer attached to all the wires), which means we're off of IV pain meds, too. Yahoo! Fingers still crossed that we get to come home tomorrow!

mac and cheese!

We're having a good day! About noon the doctor came in and said Grayson was approved for regular diet, we joked with Grayson if he wanted some mac and cheese and he instantly smiled and lit up. Doctor also said there's a good chance we could be going home tomorrow morning (fingers crossed!!), won't get our hopes up too much, he's still on IV pain meds and still is in intense pain when peeing or pooping....but hopefully that will be a little better overnight and in the morning.

Krystal and girls also came up for a visit which also made him smile and get excited. He LOVED the toy they brought them (pretty sure we're going to have one seriously jealous older brother). Thanks Loula girls!

Bryan, Connor, Grandma and Grandpa Bode are coming up tonight so that'll be great, too. Doctor wants Grayson to get up and around so maybe Connor can take him on a wagon ride around the building...supervised, of course.

Again, thanks so much for all your well wishes, really hoping we get to go home tomorrow! (but at least if we don't, hopefully that means for sure Saturday which is plenty of time before the big birthday bash on Sunday).

eating his mac and cheese  

love this one :) 

Krystal said the girls took about 30-45 minutes to pick out the perfect toy (although...may have gotten distracted in the girls section a few times...)

quick update

Nothing much to update, no amazingly great news, but no horribly bad news, either. We took the catheter out about 5PM last night, and then you guessed it...he didn't pee. Four hours later we discussed our options of some medicine that will kick his kidneys into high gear or....put the catheter back in. Then, he peed. Yahoo! He's pushing his limits, though, barely putting out enough, they want us to really push liquids today (we're still on clear liquid diet), so far us pushing juice isn't going so well. Hopefully he gets thirsty today.

We've seen a few more glimmers of our normal little boy, smiling, wanting to crash his trucks together, etc. :) Hoping of course to see much more of that today. But for now, he's resting peacefully.

You'll notice we finally put some pants on the kid, too :)

overnight

Grayson slept pretty well all night, which was so good (can't say the same for me, but hey, this isn't about me, ha). His fever came down last night and has stayed down. Pretty sure he really hates the catheter, which doctor said this morning they'll take that out around noon today. Goal today is to get him up and moving around once we take the catheter out.

Not sure they know what caused the fever, or if they ever will. Could have been a reaction to any of the medications, antibiotics, anesthesia, pain, all of the above, etc.

We've watched a little Bolt and Cars this morning, but he's back to sleep now. The only 'yes' head nod I've gotten out of him was if he wanted Daddy and Connor to come back. He even said no to chocolate milk (gasp!), but I think it's the pain medications talking, I'll still order him some anyways :) He's approved for any liquid today (so far), vs was just clear liquids yesterday.

I will also note...it feels like we've been here for three days already. Sigh.

Oh, and if you're wondering about the hot 'no clothes but socks' look, this kid LOVES socks, he really never goes sock-less (something I so can't relate to).

Thank you all for all the thoughts and prayers, they're working :)

g-man surgery update

Well, posting a little later than I would have hoped, but the rest of the day didn't go as we had hoped, either. We were able to go see him about 1PM or so, later than we anticipated, but the doctor was able to actually do a little separate procedure for Grayson (unrelated to Hirschprungs) that he needed done while he was under anesthesia, which of course saved us a trip in the future.

So, he took awhile to wake up from surgery, and really as I type this, he hasn't woken up much at all. If/when he wakes up, he's in pain, so we give him more pain meds and he settles down and falls back asleep. Later this afternoon he started to develop a fever, little over 100, then 101, then nearly 103. The nurse called in his surgeon, who brought an entire posse with him. When the words "I'm mystified" came out of the surgeons mouth, that's probably about the time I started crying. Grayson was crying, constantly saying 'owie owie owie' (however you spell that) and nothing I could do was making him feel better. They were concerned he was having a reaction to one of the meds, so they switched a few things, gave him more fluids, and the fever still wasn't really coming down. The doctor (and posse) came back 30-45 min later and we discovered Grayson wasn't urinating. So we had to put in a catheter (not fun). He had quite a bit of urine that came out immediately, so doctor was confident that was causing a lot of his discomfort. We're also changing his pain meds around to see if that will help.

Fever is down to 100-101, and every time he lightly wakes up, his blood pressure rises and he starts crying again. So, I'm thinking we're in for a long night ahead of us.

All in all, the doctor was confident how the surgery went. Three small incisions (small = 2mm) across his abdomen and the rest they did endoscopically (apparently that's not a word? sorry, mom). They removed about 7" of his bowel and seemed very confident what's left is good bowel.

Connor was very bored today, ha. He very much wanted to open all of Grayson's gifts, he'd ask Grayson if he wanted to open one during one of G's awake crying moments, and Connor would say, "mom, I think he said yes, he wants me to open it". And then repeat that 578 times today. Eventually he found a bike thing and rode laps around the unit. Hope the nurses didn't mind.

Not much more to update. The rooms are nice, I have a beautiful (truly) view of the Minneapolis skyline, we have a sweet TV set up (loaded with new/recent movies, etc.) and the nurses have been great so far. Hopefully Grayson and I catch some sleep tonight, visions of the nights in the hospital after having a baby and they want to check vitals every 3 hours are coming back tho....most annoying thing ever.

I'll leave you with a few pictures...

Waiting patiently (or not-so-patiently in Connor's case) for Grayson to wake up from surgery.

Finally asleep after the fever came on, trying to cool him off with ice packs and being uncovered.

(thanks for the pillow, Amanda!)

my bed, if I don't sleep with G

Connor making his rounds.

Will update in the morning.

patient is anxious

This sign cracks me up. Patient is anxious. If I had written the sign it would have said something like:

Patient hates you all.

He wants to go home.

Don't even think about taking vitals.

He's fine.

He just wants to get the H out of here.

Something like that would have been a little more truthful :)

I will say, they've been very accommodating here at U of M Children's Hospital. They knew well enough to not attempt taking his blood pressure in his pre-op today, unless we wanted to disrupt all children on our level and probably a few below and above. I don't know what his deal is, but he just flips out at doctor's offices, hair salons, etc. Maybe it's got something to do with people with sharp instruments, who knows.

To catch you up if you haven't read the blog lately (oh what? you're saying I haven't blogged lately? unbelievable), Grayson was diagnosed with Hirschprung's Disease, which is what Connor was diagnosed with at birth. The procedure Grayson is having today is the exact same procedure Connor had at 4 days old, they'll go in and remove the section of the bowel that doesn't have the appropriate cells that help everything flow down. This time, however, they can do it a little different this time and hopefully avoid a big incision/scar like Connor has. They'll make a small incision under his belly button and that's where they'll go in and take several biopsies of the bowel to send to the lab where they'll check for the cells. Then they'll do the actual procedure of removing the part of the bowel that's bad endoscopically. That's the plan...if anything changes during surgery, they may still have to do a larger incision but that's not the plan going in. I brought him into the OR at about 8:30, they've told us a few hours, so I'll update sometime later today when we're settled in his room. 

Surgeon says 1-2 days in the hospital but everyone else has said 3-5 days, so we will see.

Thanks for all your thoughts and prayers!

random update

Before I forget all the random things going on in our lives, I should document them...or at least document a shortened version for a potential future blog post to come at some point in time that I won't guarantee :)

I truly, truly meant it when I said this is going to be random.

1) Connor had his Kindergarten screening in early December. He did great, although failed his rhyming section...

• staff: what sounds like dog?
• C: cat
• staff: what sounds like bake?
• C: bacon (okay, some credit here, right?)

later when looking at a picture full of random things and looking for cause and effect type responses...

• staff: see that fly on the wall? What do you do to a fly on the wall?
• C: swat it (not sure if that's what they were going for, but acceptable :))
• staff: what should you do if you're thirsty (knowing there is a glass of water in the picture that the child should point out that they could drink the water)
• C: my dad has to move a loader

um...what?

So, I ask Connor about it in the car on the way home.

• Me: Connor, the teacher asked you what you do when you're thirsty and you told her that dad had to move a loader? 
• C: What? No, mom. She said THURSDAY, not thirsty, THURSDAY, so I told her that dad had to move a loader.

Even though he was beyond wrong to the original question...I find this perfect :) ha. And he was super upset that he got it wrong because he thought she said Thursday and he'd have answered differently if he knew she had said thirsty. Too cute :)

2) Bryan finally had his back surgery on January 23rd. He's been recovering incredibly well, but stil has three weeks left of no 'BLT' (bending, lifting, twisting). Needless to say...I can't imagine that he'd be putting my socks on everyday if the situations were reversed... And Grayson I'm sure can't wait for the day that Bryan can pick him up again! But, the surgery essentially provided immediate relief for Bryan, which was just fantastic. It was horrible, the morning before the surgery he was down on his hands and knees in pain. (ruptured disc was pushing onto his nerves, causing severe pain in his leg) He's also really looking forward to being able to golf again!

3) Because of #2 (or that's what I'm using as my excuse), the house has been in a disaster zone and I hate it. Hoping to work on getting it all cleaned up this weekend and back to its normal, semi-clean state. 

4) Christy Bode Photography has still kept me busy in my spare time! I think I thought that it would be pretty slow in the winter, but not sure what I was thinking, as babies are still born and kids still have milestone birthdays :) Still loving it tho! 

5) Bryan and Angie completely surprised me with a surprise 30th birthday the other weekend. Totally surprised and still so amazed at how many people were there!! So thankful for everyone that came, for Angie and Bryan for coordinating it (although the first 10 minutes were painful, ha) and yeah, it was such a fun night! Angie blogged about it here...

6) I didn't do so well on my 30 before 30 list...and may ask for an extension for a 31 before 31. Although I think it was a few of my goals that are to blame for not achieving the rest :) I'll update more about that at some point.

7) Somewhat relating to one of my goals, which was to lose 30 pounds by my birthday, and if I met that goal, to lose another 10. Two goals that fall into the 'unmet' category, but, since the first of January I'm down 18.8 pounds and it's feeling good. My friend Marni comes over every morning at 5, yes, 5, and we workout for 30 minutes before work. One does treadmill, one does a video. We have a love/hate relationship with Jillian Michaels, that's for sure. Also utilizing the My Fitness Pal app, highly recommend it! I'm just a pound or two from my wedding weight, not my ideal weight, but a weight I haven't seen since my wedding I don't think, so that's good!

8) Grayson is our spitfire. He is talking SO much more than Connor did at this age and truly just cracking us up with his personality and attitude. Love him to pieces. 

9) Speaking of g-man...we've been working with a GI specialist and right now waiting for results from a biopsy to see if he has Hirschsprungs, which as a reminder to all, is what Connor was born with. Initial exams from the doctors came back that they didn't think he had it, but the first biopsy showed he did, and we just went back this Tuesday for another biopsy to confirm. If it shows positive, he'll undergo the same surgery that Connor had at 4 days old to remove the part of the colon that is missing the appropriate nerve cells. Devastating, to say the least. We're coming to terms with it, and, it could be so much worst, but, it still sucks. I'm also trying to schedule an appointment with a genetics counselor to determine the likelihood of a third child to have it, before we make that decision. We also want to understand the likelihood of our boys passing this on to their future children. Selfishly guys, this is what devastates me the most. I was not done having kids (Bryan maybe thought he was.....), but I wasn't done. And I certainly didn't want this to be the reason we were done, I'd rather have that just been a joint decision Bryan and I made for different reasons, not this. But, enough on this. Breaks my heart and then at the same time I just feel so guilty for thinking about this because I should be focusing my attention on our sweet Grayson and what he's going through.

10) Speaking of Hirschsprungs, sort of, Connor is still not 100% potty trained and I'm starting to get nervous for Kindergarten. 

11) Holy shit, did I say Kindergarten? Am I old enough to have a kid in Kindergarten? 

12) Back to number 10. It's better, much better, he's actually speaking the words 'I have to poop' and going into the bathroom on his own, before having an accident. This.is.huge for us, but, he still has accidents, some weeks are worse than others. I will be continuing to discuss this with our GI specialist All his doctors and surgeons at Children's say it has nothing to do with his Hirschsprungs...just seems a little too coincidental to me, and now that we're at UofM instead of Children's (for Grayson), we're learning a little more that wasn't really said at Children's. Like, I was told that they're never really 'cured' of Hirschsprungs, they'll have it for life, will always have a hyperactive sphincter, etc. Sorry for all the chatter about poop, but, it's our life around here.

13) I'm somewhat, and not happy to admit it, addicted to Pretty Little Liars. But hey, whatever keeps me motivated on the treadmill right?!?!

14) Playing around with video a little (COMPLETELY amateur style) and having fun. Here are some links to a Valentine's Day video I did for work as well as a little video from my good friend Erin's baby shower.

15) SOOOO excited that I'm going to be an auntie again! Joe and Krystal are expecting their third in August. Can't wait!

16) Beyond ready for warmer weather. I don't know if it's the fact that I do photography now that I'm more than ever itching for it to be spring, or just to get back to putting my boys to bed in shorts and a t-short and waking up ready to go to school :) (the joys of having boys, right?!)

Well, I'm not going to pull my hair out trying to come up with a few more just to get to 20, you're all probably bored already :) But, that about sums up the last month or two!