Tuesday, April 8, 2008

Finally...a glimmer of hope...

We went to a clinic visit today with the sleep pulmonologist to discuss Buggy's latest tests. He showed us the CT of her chest and the absolute lack of huge permanent disease. There is some scarring, but no "syndrome". He also listened to her and said that she is clearer than has has ever heard.

We finally got her "jiggly vest" which is a "high frequency compression" vest that they get for kids with cystic fibrosis to help clear their airways. She tolerates it sooo much better than CPT (pounding on her chest and postural drainage) and I feel like it is more effective. I was really afraid of the insurance approving it as it is so expensive (think new car expensive) but I was reminded by another mother whose child has this apparatus, if it keeps her out of the hospital just once, then it has just about paid for itself.

We have also been giving the prevacid and I hope that is helping as well. We won't be able to see any GI dr until July , but we might be able to strongarm them if we go back to our general surgeon and have some more tests done to solidify the reflux/aspiration dx. He will probably agree when he finds out about the swollen larynx and surrounding tissues.

Hopefully, the chiro will have addressed the hernia and it won't need to be repaired, but even if it does, he can maybe keep it in place instead of having it slip out which happens to many kids with this kind of hernia.

J and I talked about how we hadn't really noticed it because it was gradual, but Buggy's breathing is much more quiet than it used to be. Something I've noticed recently is that living with a child that has multiple disabilities sometimes blinds you to those disabilities. I know she has them, I just forget because she is who she is, and it takes an outside source to remind me that her way of swallowing or the way she forms words is not "typical" because it's how *she* does it.

On the baby front, I think I may be finally eradicating my infection. My midwife thought it was already in my kidneys before we caught it, but I can't tell, my pregnant UTI's tend to be asymptomatic. (If you're going to have a UTI, wouldn't you rather it be that way? :-) ) I'm leaving for Colorado on Sunday and just hoping that the contractions are well-enough under control that the pressure changes of flying won't send me into labor. As long as she waits until I'm home, then we're fine...a little early, but fine.

I brought out the baby diapers and all of us are so excited to have someone that is small enough to fit into these tiny little confections. I love cute newborn diapers. It almost makes me sad that we want to try EC, but I'm sure there will still be plenty of opportunity for diaper wearing.

Anyway, if you're still with me (sorry this was so long), I'm glad you liked my tag. This week is shaping up to be pretty good. I loved Conference. I'm glad that I live in a place where I have access to all five sessions live. Listening on the radio is not easy with little ones, but it's still doable, and we borrowed omi and opi's TV so that we could watch some of it...who knew the Valley Channel would have some, but not all of the sessions? It was fuzzy, but watchable. :-)

Have a wonderful week!

Saturday, April 5, 2008

hee hee, a tag....

So I read this spouse tag put up by an old neighbor and I thought, how cheesy...

Little did I know that only two short weeks later, I would be tagged with it from a totally different circle of acquaintances. So Andrea, here it is... :-)


How did you meet your spouse? It's even cheesier than playing spouse tag. We met in high school. I was fifteen and he was seventeen. I first noticed him when he was chosen to play Conrad Birdie in "Bye Bye Birdie". He was the older brother of someone who was in my larger circle of friends. We actually started getting to know each other when we went to choir tour my sophomore year. His friends let me hang out with them (he was one of those who only hung out with girls). We didn't start dating until the next spring, really. The end of my junior year.

Where did you go on your first date? We went to a SPEBSQSA concert. It was supposed to be "research" for a quartet that Jared was putting together and everyone had dates except for the lead. The funny part was that he didn't realize he was the only one without a date and when we all sat down, he sat in between Jared and me. When I casually mentioned that we were on a date at the intermission, he felt really embarrassed and switched us places so I could sit next to Jared. I thought it was hilarious.

How long have you been together? We generally count when we "hooked up" at choir tour to be the start of our "togetherness" (I know, how cheesy can you get?) so we've been together since Spring of '95. That would be 13 years! Aack! Am I really that old?

Who eats more? Jared. He also eats faster, which amazed me when we first started dating as I had always previously been the first one done eating at social engagements. Although, if you count lactating, I certainly eat more than your average large male. :-)

Who said I love you first? I don't remember if we said it at all before the mission. I don't think so. If that's the case, then I said it first. It wasn't nearly as awkward as I was fearing it would be. It also wasn't a phrase that either one of us used often before engagement.

Who sings better?
Well, considering we got to know each other in Madrigals, I'm not sure that's a fair question. I've had more training, but that doesn't mean I have more talent. He's the one that's still singing in the community.

Who is smarter? Jared. Whenever I want to know something, I just ask him. It wasn't until we had been married a couple of years that I realized that when he didn't know the answer to a question I had asked, he just made it up, deadpan. Now, he just tells me he doesn't know...usually. Don't get me wrong, I'm not a dunce. I can hold my own in a philosophical conversation, I just don't retain info like he can.

Who does the laundry? Are you kidding! That's why we had kids...

Who does the dishes? Jared. Unless we have a nanny-which we do right now. Very early in the division of labor you call a honeymoon, we discovered that he hates the ookiness of toilets and I hate the monotony of dishes. Those are two chores that have always been defined. I do the toilets and he does the dishes.

Who sleeps on the right side of the bed? Jared always has until Belen came into bed with us after her trach came out. The "kid" bed is on "my" side (the left) and I just couldn't sleep always checking for her breathing. It was emotionally exhausting spending all day and all night with her, so Jared graciously accepted a switch. Temporarily. Now that the new one is coming and Belen sleeps with her sibs, I'm ready to switch back.

Who pays the bills? I always did that as well, until Belen had been home for a few months. Jared saw how much it was stressing me out and he took over. I have never felt so free. I am a control freak and I didn't think I could ever relinquish control of the money, but it feels so good. I just ask him how much I have and I spend away! I think I'm also better about impulse buys this way. Before, I would just buy it anyway and then feel guilty about it and now I don't have to.

Who mows the lawn?
Jared does, usually. I'm allergic to grass. But last year, when he was so busy with school, I would sometimes help him out. Not enough to make anyone believe that I did it regularly, but occasionally.

Who cooks dinner? Mostly Jared (are you starting to see a pattern here? I have an amazing husband). When we were first married, I didn't know how to cook. Now that I'm a little better, I don't cook while I'm pregnant or the first few months of a new baby. I justify it by saying to myself that Jared likes to cook and he likes to work with his hands, so it's okay. I keep hoping that someday, I'll have an amazing change of heart and actually love to cook.

Who drives when you are together? Jared. He gets carsick really easy and I don't really like to drive. In fact, driving on the constructionized freeway has turned into one of my triggers for panic attacks. I know I'll need to deal with it eventually. For now though, I'll just leave it up to him or public transportation.

Who is more stubborn? I know I'm a princess and often push too hard to get my way. I hope it's gotten at least slightly better over the years.

Who is the first to admit when they’re wrong? I'm not sure about that one. Both of us are pretty quick to say "I'm sorry".

Whose parents do you see the most? Mine, they live closer and we have the first grandchildren on that side.

Who kissed who first? heehee. Jared kissed me after a date and it was the funniest kiss. I could see his brother watching us through the window. Incidentally, it was his FIRST KISS EVER. He said, it had never come up with other girls. The first kiss after the mission was the most smashing first kiss I have ever experienced!

Who proposed?
That, I suppose, is up for debate. I'm convinced it was him. He keeps telling everyone it was me. He officially never really asked. Anyway, funny story, you decide who is telling the truth ;-)

Who has more friends? I do. Jared thinks it's my responsibility to keep "our" social life going...

Who has more siblings? Jared has way more. I come from 5 and Jared has 8 siblings.

Who wears the pants in the family?
What does that mean, really? Who's in charge? If that's the case, we each have different areas that we are responsible for. I don't think that one of us is really "in charge". Of course, if you ask Jared, he'll give the standard "I wear the pants, because Karin lets me..."

Well, since this one is kind of weird, I'll let those that like these questions to pick up the tag. How about it, Nicole? Doreen? Does anyone else even read my blog?

Thursday, March 20, 2008

Amazing...

I was able to be at the birth of a very good friend last night and it was simply amazing. She asked me there on the pretense of taking photos and helping if the kids woke up, but I don't think I did a very good job at that. Her husband got up the older to watch the actual birth and the younger didn't want to leave her dad's lap when she woke up. And I don't think *anyone* would ever mistake me for a good photographer, but I hope I got enough pics for her. Her midwife was wonderful and she did such a good job. I hope at least, that I wasn't a hindrance. Once I got there, she only had about 1 1/2 hours left before baby slid out. But I knew the end would be fast based on her previous births. I spent the afternoon outside with her and our kids as her surges picked up and she was still doing really well. When I got the call during date night (we were watching the movie "Jumper") I still wasn't sure how much time we had as she had a conversation with me that lasted several minutes and she was able to talk the whole time. Then she called as I was on my way over and I knew we would see the baby before midnight.

I have now been privileged to be a part of one homebirth and watch another. One thing that strikes me is the peaceful way that everything is handled. It was spiritual and intimate and serene, even though work is being done. No rushing around, no yelling, just quiet encouragement and warm conversations. One of the things that a lot of moms preparing for homebirth or unmedicated birth is try to watch as many births as possible. I've noticed in one of my watching binges, that I need to turn some of the videos off because it feels too intimate to be watching. Almost like a voyeur or peeping tom. this too felt very intimate but not wrong as I had been invited into the birth nest. It was an honor.

Women need to see THIS kind of birth. Young women who have never given birth need to be present at their mother's, sisters, aunt's and friends births to see the kind of power and ability in birth. They need to be invited to the birth nest of people to whom they are very close to witness what their bodies are capable of. Women who have lost faith in their bodies and women who haven't need to take care of each other and support each other and be a part of one another's birthing. That is the only way we can ever hope to fix what has happened in our culture. Now I am not advocating a large crowd at unmedicated births, I mean, birthing women are working hard and need to concentrate. With Buggy, I know that I didn't want anyone there but my midwife, doula, and husband. I also feel that this birth I want my "Womenfolk" around me. I want my sisters at my birth. I want women that I love and that love me to be there and lend support. Not a bunch of people, but a few loved ones around me.

I didn't mean to write a soapbox, but maybe I needed to. It was just so *right* to see that little family welcome a new member and fall in love last night. That's how it is supposed to happen.

Congrats, Doreen!

Monday, March 10, 2008

and now for the bummer news...

Wow, it's been a while since I posted. Sorry abut that.

Frodo has started scouts and absolutely loves it. He's now had has second pack meeting and just can't wait to show us what he spends all of his time on. He loves being with boys that he met in school and having something that is just his own. He's also found some book series that he is just eating up.

Rapunzel just turned 5! Omi and opi took her to Disneyland with her cousin and they had a blast. Since they have now started the "tradition of Disneyland at 4 or 5" in two years they will be taking three grandchildren...one of which is buggy. They're a little nervous at that prospect and proposed that all of the parents attend with their children. At least they are thinking ahead. :-)

We spent Thursday at Primary's with the some bad (and good news)...we now know why Buggy's lungs are so bad. Unfortunately, it's because she is refluxing into them and aspirating into them. That is very bad. We thought the reflux would go away even if the nissen failed. Apparently not.

We took this news much harder than I thought we would. I realized that it's because of our expectations. We have spent so long trying not to make any expectations for Buggy because nobody ever seemed to know what would happen with her. Now that we are getting ready for school and she is fully into toddlerhood, we allowed ourselves to form some expectations. Maybe even some high hopes.

When I was given the news that the dr was recommending going NPO (absolutely no food by mouth) for at least 6 weeks and maybe even longer, I just wanted to cry. I've been crying for most of the weekend. Of course, we could always go against his recommendations, but I watched the test and know that it wouldn't be a good idea. I don't want to be fatalist about it, but kids who eat like Buggy does, often get pneumonia and sometimes die from that kind of pneumonia. Luckily, we've been able to catch it quickly every time, but every time she gets it, new scarring forms in her lungs.

Her sleep pulmonologist wants us to rethink surgery about her hernia, and we may have to. The problem with that, is one surgery leads to many, many others. Failure rates for surgery like this are very high and very invasive. So much for growing out of the need for drs.

So that's the gist of the last week. We've managed to stay healthy this whole winter, mostly, and I'm planning a trip to Denver in about a month (yes, yes, check the ticker, that means at 35 weeks gestation I will be flying...) We're pretty good, considering.

Have a wonderful "Spring Break"!

Friday, January 18, 2008

new milestones

Buggy had *2* therapy appointments today and she astounded us at both of them. She has started to make verbal approximations when she is "talking" to us. Today she made several more and is even understood by her Speech therapist. We have some new goals for using her speech board and articulating better. She played some great pretend and used some new signs and approximations during the session.

After that, we went to Cache Kids and she had OT. She was coloring in circles (has only done horizontal lines up to this point) and even identified and colored pictures when directed. Two months ago she was tested in identifying pictures and she could not do it at all. We were working with her as if she had a visual processing problem. Today she identified eight pics correctly and then identified body parts on a hand-drawn person. Once she was "helped" by cuing to visually scan rather than just point to the first pic she saw, she identified them all correctly. she has *never* done this. I know this may not seem like a big deal for most kids and, for most kids this happens without us even knowing when, but for Buggy, this is huge. This has repercussions with her communication as well as vision. I had no idea we would see any improvement on this front, let alone improvement this quickly.

She is "finding her footing" and walking more and more. She has such motivation to be moving in the same manner as her siblings and friends around her. I finally have a new neuro appt along with a chest CT and a FEES evaluation. It turns out that one of the resident neuros is now an attending. We met her on her first rotation through neuro and she was one of Buggy's dr's on her first foray in PCMC. When she had to stay again for a month the next spring, this neuro got to see her again. She's really nice and I'll be interested to hear what she has to say.

I'm finding it harder and harder to keep up with Buggy and the rest of the kids. I'm getting wicked tired about the time that the kids and Buggy have caught their second wind of the day (right after nap time, of course). I also notice that if I do too much, I am sooo sore for the rest of the day and I can't even get up off the couch. People are still raising their eyebrows when i tell them I am 5 months pregnant..."Are you sure there's only one in there?" and other such comments are common. Aah well, I will never be one of those cute little mamas that only ever gain 15 pounds and it's all inside of the ribs. So far, this baby has been much more demure in her movements.

Rapunzel is playing princess every chance she gets. She loves to dress up and wear her jewelry. Frodo is continuing to impress outsiders with his vast amount of trivia that he loves to share. He's also learning new jokes and riddles thanks to omi's book collection and he is loving the Magic Tree house books. They are all excited for the new baby and they hug and kiss my belly in anticipation.

When I think about my young growing family and my beautiful kids I often get overwhelmed and worry about their/our future. Then i remember Sister Beck's amazing talk in Women's Conference this last year and I find strength. I know that we are where we are supposed to be. It gives me hope and purpose.

Sunday, December 30, 2007

why it's been so long...

hehe, you think I'm actually going to explain my absence? I've got no excuses except for my old standby. Once again, my body reminds me that I was *not* made for multitasking. If I'm gestating, that's about all I can do. After a short visit to the ER (silly protocols about 20-weekers), life has been much more predictable. I have to take it easy, but my body *is* doing its correct job.

I'm loving the new job and its flexibility.

I'm looking forward to having my sister and her friend move in and help me.

I've picked up some old knitting.

We spent almost six days traveling with family for the first time in years.

We're still healthy (this is actually the most incredible, especially after reading this post here.

And if you don't ever check my sidebar, I really encourage you to click on top pick of my shared files (it's labeled funny things from my friends). It's a post from someone on one of my g-tube groups that explained some things for me. It's a nice story about parents of children with special needs and how we relate to "other" parents.

Anyway...those are my bullet points. Maybe I'll fill it in, or maybe I'll post sooner enxt time. I even have some pics from Christmas that I might make HeaterBoy put up.

ps. We're having another girl...

Monday, November 26, 2007

hehe, what's a tag?

So, I only read a handful of blogs. But I still managed to get tagged anyway. :-) I know it's because some of my friends (thanks KM!) also only read a handful of blogs and don't have a huge group of people to tag. ;-)

So here goes:

Five things I Was Doing Ten Years Ago
1. sending a cute boy on a mission
2. Writing to HeaterBoy
3. spending my first year at Weber State (2nd year in college)
4. learning about myself and my relationship with my family of origin (does that ever end?)
5. getting ready to perform at a Christmas concert

Five things on my Life To Do List
1. make my own clothes from the raw materials I have grown
2. learn how to run a small hobby farm
3. empower women and mothers (or rather, help them to see that they already are :-) )
4. learn how to dance
5. learn how to weave


Five things I'd do if I was a Millionaire
1. STM was right, this won't go as far as I'd like, but...I'll buy a house...Modest and fits our needs, with cash
2. try to save the rest until somebody needs it. J and I can never find a shortage of good causes to donate to or support. (this will be my sub-list as I only did two things...)
A. LLL
B. Local business owners struggling to make ends meet
C. sustainable mom and pop operations
D. ICAN
E. Primary Children's Medical Center
F. any number of birth/family advocates


Five Things I'd Never Do Again
1. Ignore my gut-feelings (this one copied from KM, but totally applies for me as well)
2. Yell at my husband
3. stick my foot in my mouth by saying something totally inappropriate and rude (if only my foot didn't want to reside in that general vicinity, it would be easier).
4. allow (or rather, forcefully put)foreign chemicals into my body without first questioning the risks and benefits of said chemical.
5. question somebody's wisdom and education in having more than three or four kids. Or most childbearing decisions...

Five Favorite Toys
1. computer
2. spinning wheel
3. paper trimmer
4. jewelry tweezers/pliers
5. itunes (does software count as a toy?)

Five Things I've Read Recently
1. Warprize
2. Ina May's Guide to Childbirth
3. instructions on lung drainage postures
4. the ensign
5. pediatric drug dosages

Five of My Favorite Smells

1. newborn babes (also copied from KM, but does any body not like this smell?)
2. my husband (no really, it made me marry him. and sans cologne or aftershave is best...(sniff) aah, it makes me want him home:-) )
3. rain
4. fresh oranges
5. the absence of rotavirus ;-)


And now, Tag, you're it!!
Five People I'm Tagging...are there five people who read my blog?
1. Nicole
2. Dirtius Wifius
3. Sarah in NYC
4. Tola
5. anybody else who reads my blog... ;-)