oops!

oh my word, the last few months have flown by! this little excerpt from my last post might have something to do with my extended absence from blog world.... 

"i've been feeling a bit overwhelmed lately. you know those times when you try to doing everything at once? like, hey, i want to eat more healthy, start exercising, declutter my house, rebrand and grow my business, be a better and more involved mom, volunteer at the school, spend more quality time with my husband, cook more often (ok, or at all), do a better job with our finances... oh, and doing a little something for myself might be nice. you know, when i have some spare time."

so yeah. that pretty much covers it. i haven't made much progress on... well, anything. i think it's a case of being spread too thin... i have so much going on that i can't quite complete any one task. my business is my priority (right behind my kids, of course), and i've been keeping busy renovating part of our home for natural light photography studio. it's pretty exciting, but i'm *so* ready to be finished! we've had a new 6 foot by 5 foot window installed, then we painted the room white. (on a side note, do you have any idea how many coats of white paint it takes to cover dark brown?? we went through a gallon of primer and three gallons of white paint! and i *never* want to see another paint roller!) next step will be to rip up carpet and install hardwood floors. then i'll be ready to roll! (and a hint to current and future clients: i may be cooking up a little special to celebrate the new studio! stay tuned!) we are re-designing another room in our home for a consultation/prop room. it'll be in use shortly, but it'll be one of those things that comes together slowly.... i don't want to rush into any purchases for my consultation room, i want it to be perfect. or at least, perfectly me!

so the good news since my last post... tate had a followup with his pediatric GI doc at the end of september, and was given the all-clear. they cancelled his tests that had been scheduled for november 8th. now, don't get me wrong, this doesn't mean he's healed yet. he still has the gastroparesis and reflux. but we have it under control enough with diet that the doc doesn't find it necessary to keep badgering him with one test after another. so thankful for that! he still complains of tummy aches pretty regularly, but we've only had one day of vomiting for him in the last few months (and that was just a few weeks ago), so he's doing so much better. the doc decided that he's not having enough tummy aches to warrant meds, and i'm ok with that. thank you for all of your prayers through this whole mess! glad we're starting to move past it! 

fall is my busy season with my photography business, so i pretty much just aim to keep my head above water until january. things got a bit crazy there for a while (i mean, really... who plans a 3 day photography conference immediately followed by a week-long vacation in the middle of their busiest season?? *raising hand*)

needless to say, haven't gotten any farther with the house-decluttering-task yet. and i *really* need to do that! now that i have a studio (ok, almost), i no longer have a junk room to move all the unwanted mess to. my plan is to start a pile of crap neatly stack things in the basement until it's sorted for yard sale, donation, and consignment store. i plan to go room by room and leave no useless junk behind. i may need a bigger basement.

over the last few months.... school is going well for the kids, we survived another soccer season for jake and noah, and noah started a hip hop dance class at a local dance studio and he loves it. i've been revisiting the 80s lately while downloading some songs to my iphone for noah to dance to, since it's near impossible to find hip hop music nowadays that is in any way appropriate for kids. i've been enjoying the journey back in time... i heart 80s music. oh, and speaking of iphone... i got the new 4S for my birthday. it's simply awesome. siri is my new bff, and she keeps me on track for everything i need to do. even the kids know her... whenever i tell the boys "hey guys, don't let me forget to.... " they just respond with "just tell siri to remind you, mom!" and i won't lie... a couple of times, they've even called her *aunt* siri. she really has become part of the family. i'm pretty sure the kids think she's a real person, out in the world somewhere. if you haven't seen the iphone 4S and siri in action, check out some of the ads on you tube! and honestly, it's my first smart phone (my old phone was a dinosaur, and met an untimely death due to a water ride on previously mentioned vacation), *and* an apple product (big fan here), so i'm in love. this past month, i won a photography contest with our credit union. my photo will adorn the cover of their 2012 calendar, and an extra $500 will adorn my wallet. $500 can go a long way toward hardwood floors! 

i hope to include some photos in the next post, so stick with me. i'll try not to go MIA for so long next time!

but for now, i have a to do list taller than i am, so off i go!  

the almost tantrum

I called and left a message for the nurse at our Ped GI's office on Friday, just before lunch. I hadn't heard the results yet from Tate's gastric emptying study from Wednesday, and I don't like waiting over weekends. Well, let's be honest here. I don't like waiting at all. I've been waiting for test results more often lately, with Tate's CT scan, then 2 rounds of bloodwork, and now his gastric study. I was always half-panicked, but half-relieved when I didn't hear something right away. After all, no news is good news, right? And I was getting used to the standard call from a nurse saying "Just wanted to call and let you know that all the test results were normal". So when Dr G's nurse called me back on Friday, I was expecting just that. I knew they had the information by Thursday, so I figured they would have called right away if there were a problem. So she said "Just wanted to call and let you know that Tate's gastric study results came back abnormal." Wait... what? Abnormal? She proceeded to tell me that's all she could tell me at the moment, until they heard further from the doctor. She didn't want me to have to wait over the weekend to hear about the results. She said the doctor would likely put him on a new medication. I asked her if we need to keep him on his current medications or discontinue immediately. She said keep him on them until we hear otherwise from the doctor. Then she told me that she'd hopefully call me back that day, but if not, she is on vacation on Monday and Tuesday, so I'd hear from her on Wednesday. I explained that I really hoped to hear from her that day, because I'm not so great at waiting. She promised me that she would ask the doctor to have one of the other nurses call me on Monday if we had to wait through the weekend. 


Tate had his checkup with his Pediatric Opthamologist just a couple of hours later at the hospital, and for a moment, I panicked that I might miss the call back from the nurse.... then I realized I'd be in the same hospital, and I was really interested in getting more information on Tate's condition right away. So I decided a little ambush might be in order. All I needed was a little encouragement from Todd and a couple of friends that it was a good plan, and soon enough I decided I would just go for it. All they could do was turn me away, right? So after a good checkup from the eye doctor, then ordering Tate a new pair of glasses (more on that later!), I decided to head up to the pediatric floor. I let the girl at the desk know that I had been waiting on a call back from the nurse, but found myself in the hospital most of the afternoon, so instead of taking a chance of missing her call by the time I got home, I thought I'd just stop by and see if she had a minute. I apologized for being a bit unorthodox, and thanked her. So the nurse came out to see me, and after a couple of minutes of chit chat, I asked her to explain what was going on with Tate. She said that his stomach isn't digesting food like it's supposed to. The muscles don't contract like they should. After a little researching at home, I learned this is called Gastroparesis (in layman's terms, it's "lazy stomach"). It's not an unusual condition, but there's no "fix" for it. It can vary in severity, from mild problems with upset stomach to a need for a feeding tube in more unusual cases. They started him on erythromycin, which is basically an old-timey antibiotic. (The pharmacy I use didn't have it, which I didn't know until I got there, and the pharmacist called about 15 pharmacies before finding it, which ended up being the pharmacy back at the hospital!). I've since read that erythromycin doesn't really help this condition. I'm hoping that's not the case for Tate. The nurse gave me some generic diet information to guide us, but after reading it, we realized it doesn't all apply to Tate (one of the steps was a completely liquid diet), so we don't really know which part we're supposed to do. Google and I have become BFFs lately, so from what we've read about Gastroparesis, we will be feeding Tate smaller, more frequent meals (what we all should be doing anyway!) and try to stick with things that are easier to digest. If anyone has any recommendations on a juicer (that won't break the bank), that's something we're considering as well to make sure we can still get veggies in. 


So it's been a stressful week, and I've been in the hospital with Tate 3 out of 4 days this week, so I was a bit down last night. I was feeling sorry for Tate, feeling sorry for myself, and wondering why the kid who just had to have his eye removed now has to deal with stomach issues that make him vomit all the time. I am very aware that it could be worse, and I definitely know that in the grand scheme of things, this just isn't a big deal, but at this point, I just felt like he's dealt with enough. And been a super brave kid the whole way through! I was on the verge of throwing a tantrum, a kicking, screaming "it-really-sucks-and-it's-not-fair!" type tantrum. But then today, I got something from a friend. I got perspective. My dear friend Patrice has a sweet little boy named Jonah. Jonah has EB. I've talked about them before, and her blog is linked on mine, so you may have read their story. She posted about Tripp, another little boy who has EB. Tripp's condition has been worsening over time, and his mom, Courtney, wrote a tear-jerking poem about Tripp. You can read it here, but have your tissues ready. (Consider yourself warned.) I realized when I read it (not that I've never realized before, but sometimes you just need a reminder, you know?) that God has given us so much when he gave us Tate. He has given us happiness, laughter, hope and a renewed faith in Him. Tate's journey has brought me closer to God than I've ever been. And it really could be so much worse. So just as we developed a "new normal" with Tate's PHPV, we'll develop a "new normal" with his Gastroparesis. He'll be ok. We'll be ok. And I'm thankful. 


Thank you for all of your prayers for Tate. Please be in prayer for Tripp and his sweet mom, Courtney.