Good morning everyone. I suppose it's time for an update. I've got good news and bad news.
The good news is that Tyler does NOT have Chagas OR holes in his heart. The bad news is that the next step is a 30 day monitor which sucks, and Tyler is in the last couple of weeks of ALS so he really can't be gone from class. So he'll put that on the day after graduation, which is February 16th. The crappy thing about this monitor is that it doesn't do what you'd think it would do. It doesn't record the whole 30 days. How this thing works is that when you feel a symptom (light headedness, dizzyness, black outs) then you push a button. The monitor then records 30 seconds before you hit the button then a minute after. When it's recorded then you have to use a land line, call a number that they've given you, make a voice recording of what you were feeling, then put the monitor on top of the phone and it transmits it's little minute and a half of data. If you don't transmit it before the next time you hit the button, then it records right over it. It's very hands on and annoying, And the really crappy thing is that when Tyler's heart stopped last time he was on a monitor, he wasn't aware of it, and they already saw that his dizzyness wasn't caused by low heart rate. So this is what's going to happen, and I can almost guarentee it, he's going to wear this annoying monitor for a month, we'll have the follow-up a week later, then he'll say that the symptoms and the low heart rate aren't related, then he's going to recommend this other monitor that goes under the skin but that really does record everything, whether you're aware of it or not. And he'll have to wear that monitor for another 30 days, then it'll probably be a couple of weeks before they can sort through the data and get it compiled into a report for the doctor to read. Which means that it could be May or June before we find out whats wrong with his heart. Why not start with that second monitor you ask? Because it's "more invasive" and they only want to do it if "the external monitor doesn't show a cooralation between symptoms and heart rate". Apparently the requirement for a pace maker is "2 seconds with symptoms, three seconds without" meaning how long his heart stops. So how much do you want to bet I'm right? :P Anyway in the meantime Tyler has an appointment with his Primary Care doctor to see if we can FINALLY get that referral to see a neurologist and get his headache taken care of. Originally they wanted to "see what the cardiologist says" but we are NOT waiting another 2 months at least to get his headaches gone. It has been a constant migrane for 6 months now. Rediculous! Anyway, so that's what's going on. I will update as things happen.
Saturday, January 29, 2011
Thursday, January 27, 2011
My guardian angel had another birthday.
So some of you know that we had a late-term miscarriage/stillborn (depending on if you're going by size of baby or time in uturo) shortly after we got married. On the 25th our little angel Elizabeth would've been 4. That day is always, even 4 years later, a crappy crappy crappy day. I find myself reliving the day, going over every detail, looking at the few pictures I have of her, and trying to picture what she would look like if she was actually a happy, healthy, living 4 year old. I can't. I can't even picture her as a normal baby. Maybe something's wrong with my imagination, I don't know. Anyway, this isn't what this post is about. Every year since she was born, I haven't lived close enough to where she is buried to leave flowers. The first couple of years were really hard, because it felt like I was forgetting her like everyone else. But then last year, my best friend Brianna, and my sister-in-law both went and dropped off flowers. It was really sweet. This year, I bought the flowers and had them sent to Brianna, and she took them over for me. And she also took pictures. I can't even express how much it means to me to know that my little girl isn't forgotten. And I know that a lot of people think I should "get over it" because she wasn't "a real baby", she wasn't born alive, I didn't get to see her smile at me or learn to crawl or have a little personality. Unless you have gone through the same thing, you can't understand. The second you find out you're pregnant, you begin to have dreams. About what your baby will look like, what they might be when they grow up, taking them to school, everything. When that life ends, even when you haven't gotten to hold, feed, or play with her, your dreams about that life ends too. And you do have to go through a mourning process. In our society, it seems that women who have had a miscarriage or still-born never talk about it. Like how someone never talks about it they're struggling with depression. I think we take it as a personal failing as woman, like it's OUR fault that the chromosomes had an error. Someday I'd like to be able to spread awareness. 99% of the time it is NOT your fault. The only times that are the woman's fault is when she is abusing drugs or alchohol, or when she doesn't leave a violent environment. Most miscarriages occur because of chromosome errors, and has nothing whatsoever to do with the woman. You are ALLOWED to mourn, it is not shameful, you shouldn't be pressured into "getting over it" because you didn't "know" your baby. It was a life, your baby's life. And he or she deserves to be loved, mourned and cried over. Don't let it take over your life, but don't pretend like that life didn't ever exist.
Anyway, that was a tangent, what I really wanted to do was post a couple pictures that Brianna sent me and also, this year I made a cake for her. This is the first year I've felt comfortable enough to share Elizabeth with all you. Thank you again Brianna!
Around the statue it says, "He shall gather the lambs in his arms" and the plaque on the ground says, "For all the born and unborn, known only to God" also in spanish
My note says, "I miss you baby girl. Love, Mommy"
Anyway, that was a tangent, what I really wanted to do was post a couple pictures that Brianna sent me and also, this year I made a cake for her. This is the first year I've felt comfortable enough to share Elizabeth with all you. Thank you again Brianna!
Around the statue it says, "He shall gather the lambs in his arms" and the plaque on the ground says, "For all the born and unborn, known only to God" also in spanish
My note says, "I miss you baby girl. Love, Mommy"
Wednesday, January 26, 2011
Jillian is 10 months old!
So today Jillian is 10 months old! Crazy right? Does it seem like the time flew faster than it should have to any of you? It's amazing! So here are some stats;She is 16.8 lbs, little compared to alot of babies but much bigger than Kari was at her age.
She is now officially too tall for 6-9 pants and sleepers, time to switch out clothes again *sigh*
She crawls like a pro
She is always pulling herself up on stuff and then letting go. She'll stand by herself for a few seconds before she falls on her bum.
She REALLY tries EVERY DAY to climb those stairs. Kari stands at the top and says, "come on Jill, you can do it!"
She will not eat baby food in any way, shape or form but she will eat anything that the rest of us are eating.
She has 8 teeth!!!!
Her favorite person is Kari, and the feeling is mutual.
She LOVES pasta, gold fish, ritz crackers, juice, nesquick chocolate milk, cherrios and puffs.
Her favorite thing to play with (besides Kari) is a clean diaper. Seriously.
She LOVES bath time.
She is our smily happy, giggly little girl!
Thursday, January 20, 2011
Update on Tyler's heart
Okay everyone, I have an update. And no matter how you slice it, it’s not pretty. We’d been told that if “something comes up” they’d call us. We thought that really meant if something comes up. So the 14th rolls around and no phone call so when we walked our happy butts into the office I was fully expecting to be told, “His heart is fine. It’s just naturally slow because he’s young and in shape” so when the doctor started talking I just about had a melt down. So apparently there is one of three things wrong with Tyler’s heart:
1. The right two chambers in his heart are “larger than we’d expect them to be” which could indicate that either his heart wasn’t fully developed or he has a degenerative heart condition that would have holes on the left two chambers in his heart making the right side have to work harder, therefore the muscle gets larger. On Monday Tyler had another echocardiogram this time with saline to see if bubbles make it from one side of the heart to the other. If that is the case, it will require surgery. If there is enough issue around the holes and the holes are small enough, they can go in through a vein in his groin area, if not, it would be a full on open heart surgery to repair the holes with a patch.
Option 2: while on the heart monitor Tyler’s heart stopped for almost two seconds and he wasn’t aware of it. If his heart isn’t compensating for holes, then they will put Tyler on another monitor, this time for 2 to 4 weeks to see how often and for how long his heart stops. This will lead to a pacemaker.
And finally 3. While we were talking to the doctor he’d said that infections in any organ could mess up other organs. I’d been talking to my mother-in-law and she’d reminded me that while Tyler was serving his mission in Brazil he’d gotten parasites. I’d mentioned that to the doctor and he asked a bunch of questions and then told him to go to the lab to be tested for Chagas disease. Now this disease is very rare in the United States, but it’s not rare at all in Brazil. The worst news is that it leads to heart failure, is incurable and the medicine out there that can prevent the symptoms work best in the acute stage, which would have been while he was in Brazil. I’ve been doing some research and this particular disease has a lot of similarities to Tyler’s case including the right side of the heart being larger.
I never thought I would actually be hoping for heart surgery, but that’s the only thing that isn’t permanent/or can’t be fixed at all. Our next follow up is on the 27th. Wish us luck. Thank you all for your continued prayers and support.
1. The right two chambers in his heart are “larger than we’d expect them to be” which could indicate that either his heart wasn’t fully developed or he has a degenerative heart condition that would have holes on the left two chambers in his heart making the right side have to work harder, therefore the muscle gets larger. On Monday Tyler had another echocardiogram this time with saline to see if bubbles make it from one side of the heart to the other. If that is the case, it will require surgery. If there is enough issue around the holes and the holes are small enough, they can go in through a vein in his groin area, if not, it would be a full on open heart surgery to repair the holes with a patch.
Option 2: while on the heart monitor Tyler’s heart stopped for almost two seconds and he wasn’t aware of it. If his heart isn’t compensating for holes, then they will put Tyler on another monitor, this time for 2 to 4 weeks to see how often and for how long his heart stops. This will lead to a pacemaker.
And finally 3. While we were talking to the doctor he’d said that infections in any organ could mess up other organs. I’d been talking to my mother-in-law and she’d reminded me that while Tyler was serving his mission in Brazil he’d gotten parasites. I’d mentioned that to the doctor and he asked a bunch of questions and then told him to go to the lab to be tested for Chagas disease. Now this disease is very rare in the United States, but it’s not rare at all in Brazil. The worst news is that it leads to heart failure, is incurable and the medicine out there that can prevent the symptoms work best in the acute stage, which would have been while he was in Brazil. I’ve been doing some research and this particular disease has a lot of similarities to Tyler’s case including the right side of the heart being larger.
I never thought I would actually be hoping for heart surgery, but that’s the only thing that isn’t permanent/or can’t be fixed at all. Our next follow up is on the 27th. Wish us luck. Thank you all for your continued prayers and support.
Saturday, January 8, 2011
Pictures, pictures, and more pictures.
So there's not much new here, so I'll just give you pictures. Happy day everyone!
Run-away baby!!! She escaped me during a diaper change (hence the diaper butt)
Rub a dub, dub, fun in the tub.
For some reason the dishwasher is a thing of eternal entertainment for my little ones. Usually I can't do the dishes if they're up. Jill trys to stand up and usually ends up bonking her noggen on the corner of that door.
Cute baby!!
I got a new hair cut. I LOVE it. I have the best hair dresser ever!!
Jill standing up.
Jill in her adorable outfit that Auntie Tasha gave her
Matching outfits from grandma Haueter (they are pink, but they look red in that lighting)
I love it.
Best mugs ever! :D
Monday, December 27, 2010
Tyler's appointment, Christmas and Jill's 9 months
Okie dokie, this post will be all over the map;
Wednesday December 22 was the long awaited nuerology appointment. And it was a total fail. The guy is looking at the MRI as we walk by to the room, then comes in, does your basic exam stuff (stand on one foot, follow my finger, that kind of stuff) then tells us that the cyst is not causing any pressure therefore is not the problem. Then he asks us if we've been seeing a neurologist (?!!) We said, we thought that's what we were here for, and he says all snotty like, "No, I'm a neuroSURGEON, I only deal with things that require surgery, a nuerologist deals with all the other stuff that doesn't need surgery" So basically, we waited two and a half months for the WRONG doctor. And we sent that MRI down to him before he'd even let us get an appointment to "make sure we don't waste his time or yours" so if he actually looked at it (doubtful) then why didn't he call and say, the cyst isn't your problem, look elsewhere? Tyler has had to deal with this horrible pain and dizzyness for 4 months now, and it could have been taken care of by the time we all sat around on our butts waiting for the WRONG doctor to do absolutely nothing. Annoying.
Anyway, on to happier things, Christmas was great. Tyler got me some pearls, I love them. I feel so grown up. lol! Kari had a whole pile of presents, I think we went a little overboard. But Jill quite a few things too. lol! The kids woke up at about 8:30 and then we opened presents (which took forever because the kids kept getting distracted) by the time we'd opened everything, then got everything out of the packaging to throw all the garbage away and put together whatever needed "some assembly" it was about 12, an hour later we all went to this year's Christmas in Ice and had our picture taken with Mr and Mrs Claus (the REAL Santa) I told him he should take a nap and he says, "oh hoho! When?" :) Funny guy. We didn't really do Christmas dinner. We had home made chicken soup (yum) instead because with all the stress and stuff with Tyler's issues I didn't really feel like doing a big huge production.
The next day was Jillian's 9 month day. It's crazy to think that it's already been 9 months. Here are some things about Jill:
She has been sleeping through the night for almost a month (yay!!)
She will NOT take a bottle, she will steal Kari's sippy cup though and drink whatever is in it.
The ONLY baby food she will eat is sweet potatoes, everything else we feed her is big people food.
She thinks that she can walk, and ends up biffing it often because of that thought.
She'll pull herself up to her knees and then just sit there kneeling, I have never seen a baby do that, and both my mother and my mother-in-law agree with that observation.
Kari is her favorite person in the world
She finally loves baths
She get's knocked over or stepped on or whatever by Kari a lot (by accident usually) but she'll only cry about it if it really hurts. She's a tough kiddo
She did NOT like going out in the cold and being all bundled up, but she did like going down the ice slides with me.
She GROWLS for her food
She's growing like a weed and I love every second!!
In Santa's ice sleigh at Christmas in Ice (and yes, those are authentic Alaskan fashion fur hats, we're stylin')
Jill being not happy
But so cute
Kari opening presents
Our picture with the REAL Santa
Jill's growling "feed me" face
Kari's smile at grandma face
Kari and her bff Caroline
Jill on Christmas morning.
Wednesday December 22 was the long awaited nuerology appointment. And it was a total fail. The guy is looking at the MRI as we walk by to the room, then comes in, does your basic exam stuff (stand on one foot, follow my finger, that kind of stuff) then tells us that the cyst is not causing any pressure therefore is not the problem. Then he asks us if we've been seeing a neurologist (?!!) We said, we thought that's what we were here for, and he says all snotty like, "No, I'm a neuroSURGEON, I only deal with things that require surgery, a nuerologist deals with all the other stuff that doesn't need surgery" So basically, we waited two and a half months for the WRONG doctor. And we sent that MRI down to him before he'd even let us get an appointment to "make sure we don't waste his time or yours" so if he actually looked at it (doubtful) then why didn't he call and say, the cyst isn't your problem, look elsewhere? Tyler has had to deal with this horrible pain and dizzyness for 4 months now, and it could have been taken care of by the time we all sat around on our butts waiting for the WRONG doctor to do absolutely nothing. Annoying.
Anyway, on to happier things, Christmas was great. Tyler got me some pearls, I love them. I feel so grown up. lol! Kari had a whole pile of presents, I think we went a little overboard. But Jill quite a few things too. lol! The kids woke up at about 8:30 and then we opened presents (which took forever because the kids kept getting distracted) by the time we'd opened everything, then got everything out of the packaging to throw all the garbage away and put together whatever needed "some assembly" it was about 12, an hour later we all went to this year's Christmas in Ice and had our picture taken with Mr and Mrs Claus (the REAL Santa) I told him he should take a nap and he says, "oh hoho! When?" :) Funny guy. We didn't really do Christmas dinner. We had home made chicken soup (yum) instead because with all the stress and stuff with Tyler's issues I didn't really feel like doing a big huge production.
The next day was Jillian's 9 month day. It's crazy to think that it's already been 9 months. Here are some things about Jill:
She has been sleeping through the night for almost a month (yay!!)
She will NOT take a bottle, she will steal Kari's sippy cup though and drink whatever is in it.
The ONLY baby food she will eat is sweet potatoes, everything else we feed her is big people food.
She thinks that she can walk, and ends up biffing it often because of that thought.
She'll pull herself up to her knees and then just sit there kneeling, I have never seen a baby do that, and both my mother and my mother-in-law agree with that observation.
Kari is her favorite person in the world
She finally loves baths
She get's knocked over or stepped on or whatever by Kari a lot (by accident usually) but she'll only cry about it if it really hurts. She's a tough kiddo
She did NOT like going out in the cold and being all bundled up, but she did like going down the ice slides with me.
She GROWLS for her food
She's growing like a weed and I love every second!!
In Santa's ice sleigh at Christmas in Ice (and yes, those are authentic Alaskan fashion fur hats, we're stylin')
Jill being not happy
But so cute
Kari opening presents
Our picture with the REAL Santa
Jill's growling "feed me" face
Kari's smile at grandma face
Kari and her bff Caroline
Jill on Christmas morning.
Wednesday, December 15, 2010
Just a chatty update
So what can I say? We're sitting around waiting for a call that may or may not come about Tyler's heart echo and monitor results. Christmas is ten days away and I am nowhere NEAR ready, and Kari is going to be heart broken when the tree comes down and the snow melts. She LOVES it. The snow, the lights, the tree, the "sparkles", the music, and especially the Nutcracker. We watch the Barbie Nutcracker pretty much every day and I've got a little wooden Nutcracker that has a music box in the base. She calls it "wonderful" and wants him to sing all the time. It's pretty much her best friend and she'll probably cry when it's time to put "wonderful" away. Is it just me that thinks that this particular holiday season has gone too fast? With all the worrying and tests, and doctors appointments that we've been having/waiting for it seems that I've focused very little on Christmas, which is very unlike me. I did finally get (most) of my cards out, and I'm just waiting on something in the mail to get to me so I can send the last thing out. It will probably be late, I'm just going to say that now. lol! This is the first year that I wasn't completely and totally done by now. I don't like the feeling and it's costing me an arm and leg in shipping since everything costs more/takes longer to ship from up here.
A little about my kiddos, Jill will be NINE months the day after Christmas!!! Seriously, NINE months. I don't know when she did it, but she's grown up. She's crawling all over the place, eats everything in sight (even things that are not food items) I have to sweep/vacume about twice a day because Kari leaves a mess that Jill trys to eat. Yuck. She also learned how to sit up by herself. It's actually pretty funny looking. And the other day she tried to stand up! I told her she's much too young to be trying to walk. Although, her being farther from the floor does have it's benifits........
Kari is such a little princess, but the nice kind, not the snobby kind. She's usually very helpful and adores her little sister. She's not really great at sharing right now though. She'll come up to Jill, take whatever she has that hasn't been designated as "baby's" and throw it behind her. Little booger. We're working on that one. I was working on a project the other day and she wanted to see it and feel it. Go figure, my two year old knows "velvet" and "mink" lol! I think she might be a little seamstress when she gets a little older. And she wants to be a ballerina. All I hear all day is her wanting to see the "pretty dancers" then she'll put her arms above her head and go around in circles (while saying 'cicle, cicle, cicle") So when she's three I'm going to put her in the local dance school. Kid could use some grace if you know what I'm saying. Poor thing definately takes after her momma. Klutz.
Anyway, I'll let you all know if something comes up about Tyler's heart. Until then I think I'm going to eat, drink (hot chocolate) and be merry. :P
A little about my kiddos, Jill will be NINE months the day after Christmas!!! Seriously, NINE months. I don't know when she did it, but she's grown up. She's crawling all over the place, eats everything in sight (even things that are not food items) I have to sweep/vacume about twice a day because Kari leaves a mess that Jill trys to eat. Yuck. She also learned how to sit up by herself. It's actually pretty funny looking. And the other day she tried to stand up! I told her she's much too young to be trying to walk. Although, her being farther from the floor does have it's benifits........
Kari is such a little princess, but the nice kind, not the snobby kind. She's usually very helpful and adores her little sister. She's not really great at sharing right now though. She'll come up to Jill, take whatever she has that hasn't been designated as "baby's" and throw it behind her. Little booger. We're working on that one. I was working on a project the other day and she wanted to see it and feel it. Go figure, my two year old knows "velvet" and "mink" lol! I think she might be a little seamstress when she gets a little older. And she wants to be a ballerina. All I hear all day is her wanting to see the "pretty dancers" then she'll put her arms above her head and go around in circles (while saying 'cicle, cicle, cicle") So when she's three I'm going to put her in the local dance school. Kid could use some grace if you know what I'm saying. Poor thing definately takes after her momma. Klutz.
Anyway, I'll let you all know if something comes up about Tyler's heart. Until then I think I'm going to eat, drink (hot chocolate) and be merry. :P
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