Hi Everyone - I'm not sure how many regular readers we have due to lack of updates, but we have been really thinking about moving posts regarding the twins and our crazy life revolving around them to a new blog. Ollie's Tale will forever remain as a source of info on SMA and the suck thereof, of Ollie's life and related, but it really seems like the twins and our current life should have it's own existence...any ideas?
Thanks for all the support of the years!
Sunday, January 1, 2012
Monday, December 19, 2011
Holy %#*! where did the time go?
I decided to see when the last post was on the blog and realized it was September 1st.
It was about bodily functions.
When that post was made:
Now we have running, pushing, shoving, taking, giving, smacking. All the craziness of toddlerhood.
Wow is it exhausting.These guys are blast and a challenge
I know we've said it before, but we really do intend to start writing again. If nothing else, a blog is like a public diary of events that you have recorded for yourself, not just for the world at large.
Oh yeah, we have cute pictures. Lots and lots of them. Videos too. If you are on Facebook you probably have seen some of them, if not, I'm going to get some up over the holidays (whether that holiday is Christmas or Independence Day, I'm not yet sure)
.
It was about bodily functions.
When that post was made:
- Penny wasn't walking.
- Isaak wasn't walking.
- Real words had not yet been spoken (Penny has about a dozen, Isaak maybe 8).
Now we have running, pushing, shoving, taking, giving, smacking. All the craziness of toddlerhood.
Wow is it exhausting.These guys are blast and a challenge
I know we've said it before, but we really do intend to start writing again. If nothing else, a blog is like a public diary of events that you have recorded for yourself, not just for the world at large.
Oh yeah, we have cute pictures. Lots and lots of them. Videos too. If you are on Facebook you probably have seen some of them, if not, I'm going to get some up over the holidays (whether that holiday is Christmas or Independence Day, I'm not yet sure)
.
Thursday, September 1, 2011
Epic Vomitus
Penny puked tonight.
Well, more realistically, Penny recreated the Exxon Valdez spill with the living room carpet acting as the ocean, partially digested milk substituting for crude oil, daddy acting as an oil covered baby seal and mommy as the guy in the yellow suit cleaning it all up. Chunks of meatballs and green beans played the role of tar balls just in case we maybe wanted to pretend it was the BP Gulf spill.
30 minutes later and Penny has new clothes. Daddy has new clothes. Mommy has new clothes and the carpet is now very, very clean in 3 locations. The boppy is still on life support.
Penny hasn't spit up much in her young life. Really, maybe a couple of dozen times in 16 months. Contrast this with little Isaak. I'd wager his count is closer to 2000. (He was 3 for 4 today. Struck out in the bottom of the ninth when his bunt rolled short and was picked up by the catcher).
That being said, I think the sum volume of ejecta might be about equal. See, Isaak just casually - vrpps. Some spit-up comes out, we wipe it off. Once in a while an immediate outfit change is needed...
Isaak is Old Faithful. Not the most dramatic of events, but a regular and known quantity.
Penny pukes like a food-poisoned Orca...*
And with that, we are back on the air.
*Disclaimer - I have no idea how a food-poisoned Orca pukes. I can only imagine it's gruesome. Probably involves baby seals.
Update: Now I feel kind of bad. Every time Penny has upchucked before has been gag reflex related. This appears to actually be illness. Bekka is off to the pediatricians office right now. She vomited 2 more times and has diarrhea and hasn't had a wet diaper since last night.
We had a great night. Or not.
Update 2: Shot of Zofran at the doc. Seems to be keeping stuff down now but the back-end isn't happy yet. Also had a good wet diaper, so it appears dehydration has been averted.
Well, more realistically, Penny recreated the Exxon Valdez spill with the living room carpet acting as the ocean, partially digested milk substituting for crude oil, daddy acting as an oil covered baby seal and mommy as the guy in the yellow suit cleaning it all up. Chunks of meatballs and green beans played the role of tar balls just in case we maybe wanted to pretend it was the BP Gulf spill.
30 minutes later and Penny has new clothes. Daddy has new clothes. Mommy has new clothes and the carpet is now very, very clean in 3 locations. The boppy is still on life support.
Penny hasn't spit up much in her young life. Really, maybe a couple of dozen times in 16 months. Contrast this with little Isaak. I'd wager his count is closer to 2000. (He was 3 for 4 today. Struck out in the bottom of the ninth when his bunt rolled short and was picked up by the catcher).
That being said, I think the sum volume of ejecta might be about equal. See, Isaak just casually - vrpps. Some spit-up comes out, we wipe it off. Once in a while an immediate outfit change is needed...
Isaak is Old Faithful. Not the most dramatic of events, but a regular and known quantity.
Penny pukes like a food-poisoned Orca...*
And with that, we are back on the air.
*Disclaimer - I have no idea how a food-poisoned Orca pukes. I can only imagine it's gruesome. Probably involves baby seals.
Update: Now I feel kind of bad. Every time Penny has upchucked before has been gag reflex related. This appears to actually be illness. Bekka is off to the pediatricians office right now. She vomited 2 more times and has diarrhea and hasn't had a wet diaper since last night.
We had a great night. Or not.
Update 2: Shot of Zofran at the doc. Seems to be keeping stuff down now but the back-end isn't happy yet. Also had a good wet diaper, so it appears dehydration has been averted.
Friday, August 5, 2011
A Reflection from Getty's Mother
When Ollie was diagnosed with SMA, our world changed forever.
Strike that.
When Ollie was born, our world changed forever. His short life changed many worlds, not just his mama's and his daddy's. I think Neil is right about Ollie being too much for one vessel.
On Oliver's birthday, I want to share with you a post from a mother who's world was changed when her daughter, Getty, was born. Kate recently wrote about the one year anniversary of their "d-day" or diagnosis day. What she wrote really resonated with me and I hope it will with you, too.
Happy Birthday, lil' dude! We love you!
A Reflection From A Mother
30 Jul 2011From Kate:
I have had an entire year to think about this day, the anniversary of Getty’s diagnosis.
I remember what we were doing that day before her 4 month check-up at noon. I remember what I was wearing, I remember packing the small diaper bag, I remember the weather outside, I remember everything.
I remember the pediatrician appointment being rather routine. I remember the nice discussion we were having with our doctor about Getty. I can’t stress how routine it was. And in a moment right before we left, the doctor made one more quick check on how Getty was bearing weight on her legs and the entire game changed. She did another test with her reflexes and then another to look into her mouth to see the movement of her tongue, all the while Mark and I just sat back as parents not thinking anything was wrong. Then for some reason I started to look at our doctors facial expression. She started to have this really intense look on her face and then it seemed to turn to concern. In a way I was trying to ignore her because in my mind nothing could be wrong with Getty. We hadn’t noticed anything wrong so how could she find something we were not already privy to.
She finished her exam and sat back down in her chair. She paused and then told us that she was concerned. “I don’t want to tell you what I think it is, because you both will go home and google it. I hope I am totally wrong and you get mad at me later for adding such stress to the situation, but I am going to make an appointment with a neurologist to have Getty seen today.”
As I write this, those emotions just come back in a wave of terrifying proportions. We left the room, Getty snug in her car seat and we made the trip home only to wait for the next appointment. I laid Getty down in our bed and we just snuggled together. I could not restrain myself, I cried and cried and cried. I didn’t know what I was crying about really, just the notion that something wasn’t right was terrifying me. Getty looked like a normal 4 month old child. What on earth could it be? I stopped thinking and concentrated on her sweet little face and I just started talking to her. I started to bargain with her, like she in some way had the power to change the outcome of this situation. I told her that she couldn’t leave me. I begged her not to leave me. Her sweet blue eyes just looked back at me with such comfort. I held her for hours until it was time to go to the next appointment. 4 o’ clock came and we were sitting in another doctor room. The neurologist came in and did similar tests as our pediatrician had done. He sat back in his chair as our pediatrician had done and then he told us what he thought. Before he spoke though I can only imagine what was going on in his head. How do you phrase a sentence like this so a family understands but in the same breath is manageable to digest? He did pause for some time and I remember thinking to myself that he doesn’t think we could handle that maybe Getty won’t be able to walk? “Does he think we are shallow enough to not handle news like that, bring it doc!” I was already getting defensive and I had no idea what he was going to say.
“Getty has Spinal Muscular Atrophy. It is a genetic progressive disease that targets the muscles. I believe she has type I which means it is the most aggressive.” The room was silent. No crying, no screaming, no nothing, we were in complete shock. The only thing that I was able to muster up was, “how long do we have?” His quiet voice responded with, “1-2 years on average.” More staring and more silence continued, all the while Getty was laying on the bed gurgling sweet coos to us.
He offered the same consolation, “I hope I am wrong, and I hope you call me later and yell at me for being so wrong.”
I was never able to make that call because he was right, Getty had SMA and Mark and I had given it to her because we were carriers. We unknowingly gave Getty a terminal disease. We gave Getty a disease that will continue to weaken her body. We gave her a disease that will compromise her swallowing. We gave Getty a disease that will compromise her breathing. We gave Getty a disease that currently has no viable treatment or cure. We did this!
So now what on earth does a family do? How on earth does one digest this kind of news? How on earth do you move on with life?
Well I guess the answer is, you just do and that is what we did. You get through one day, the next might not be so great, but the next day might.
Our lives will never be the same since July 30th, 2010.
I wrote soon after her diagnosis a phrase that I like to reflect on from time to time. “What can I say, life as we know it has changed forever. For better or for worse, we will stand together. I am honored to be mommy to the best little girl in the world. Miss Getty we love you!”
This helps me get through some very difficult days. But that is what we are doing, standing together through good and bad. No day is similar to another, there is no security that tomorrow will be here, so we just live everyday like it is seriously our last. It is although, no longer doom and gloom. In fact I would argue that I have never lived life with such fulfillment as I do now as a mother and as a human being. I would have obviously wanted a different outcome, but now I wonder if that would have been possible without one? I am still searching internally with that answer, perhaps I will never know.
What I know for sure is that the love I have for Getty is a love I never thought I was capable of. She makes my soul whole. She has the ability to comfort with the most gentle coos and touches. She is so thoughtful and such a strong-willed little girl. I am so in awe of her power and zest for life. How can such a little being be so wise and teach her parents such life lessons at such a young age? I thank her every day for choosing me as her mommy. I am so lucky.
I hope for those reading this post take in to account a couple of things. SMA does not care who you are. It doesn’t care if you decorated your nursery with cute bedding and beautiful furniture. It doesn’t care if you had dreams of your child one day following in your footsteps and kicking around the soccer ball. It doesn’t care if you were subconsciously dreaming about future milestones; high school, college, wedding. All it does is take. 1 in 40 are carriers. That is over 10 million people alone in the United Sates. SMA can certainly be anyone’s reality. A simple carrier blood test can give you the knowledge you need to make the best decision possible for your family. It is seriously as simple as a blood test. Most doctors don’t even know what SMA is so you can’t assume they will offer this test to you, you need to ask, even if there is no family history. There usually never is.
Having said that I believe it is a choice to allow SMA to defeat you. I am in constant battle with our SMA monster that lives in our home. He is here and lives among us, but he does NOT define Getty in any way shape or form. Getty is, Getty. She is a robust little lady who loves life. Perhaps it is not the path I would have wanted for Getty, but it is what is, and we fight everyday for her. We believe that there is hope for her life and for other children with SMA. You have to hope. We believe we will see a treatment and/or cure in her lifetime. We believe that SMA will become more mainstream and lose its “orphan disease” title. There is nothing “orphan” about the #1 genetic killer of young children. Whomever designated SMA with that title certainly got their facts wrong and has done a huge disservice to this disease. Orphan, to me, implies insignificant and there is nothing insignificant about SMA.
On the eve of National SMA Awareness Month, I want to thank everyone that has helped spread the word about SMA. Whether you have received a Tell 5! package or you have learned from SMA by reading our blog or other great SMA non-profits and families around the US, I think it would be safe to say that we all thank you.
No family should EVER be given the diagnosis of SMA. No family should be given the dire statistics of 1-2 years of life expectancy. No child should have to have their respiratory compromised due to a degeneration of muscles. We need to keep fighting for awareness and we need to keep fighting for a cure. Getty and her friends deserve nothing less. That is why we fight so hard. I want to see Getty attend high school, I want her to graduate from college, I want her to get married, I want her to have a full life and an extended one full of experiences. Getty deserves that.
Getty said “dada” the other day and Mark and I were over the moon. Will more words follow? We have no idea, but we are so thankful for “dada.”
Wednesday, August 3, 2011
Today
Has been a pretty good day.
It's been a long time since we've posted about Ollie, but we've gotten emails and phone calls from all over and want to say thank you.
Thanks for loving our little guy and thanks for loving us. We were talking recently and remarked to each other how August 3's approach didn't seem as terrible as we thought it would. A lot of healing has gone on in the last year, much of that thanks to two little ones that are our main focus in life.
There is a sense of something "missing" today. Of course, we'd love for Oliver to be here with us and playing with his brother and sister. In a way, he is. All of the little reminders are there, from photos, to notes, to toys that Penny and Isaak love as much as he did.
He was a special little guy that touched a lot of people and we like to think he made us better parents, preparing us for double trouble. You don't want to project too much on a 1 year old child, but Penny seems to have captured much of Ollie's mischievousness and Isaak his pure joy in life. Perhaps there was too much Ollie to be contained in just one vessel.
Ollie's Tale may no longer have him as a main character, but it still goes on.
Today really isn't a sad day. It's a good one.
Miss you buddy!
It's been a long time since we've posted about Ollie, but we've gotten emails and phone calls from all over and want to say thank you.
Thanks for loving our little guy and thanks for loving us. We were talking recently and remarked to each other how August 3's approach didn't seem as terrible as we thought it would. A lot of healing has gone on in the last year, much of that thanks to two little ones that are our main focus in life.
There is a sense of something "missing" today. Of course, we'd love for Oliver to be here with us and playing with his brother and sister. In a way, he is. All of the little reminders are there, from photos, to notes, to toys that Penny and Isaak love as much as he did.
He was a special little guy that touched a lot of people and we like to think he made us better parents, preparing us for double trouble. You don't want to project too much on a 1 year old child, but Penny seems to have captured much of Ollie's mischievousness and Isaak his pure joy in life. Perhaps there was too much Ollie to be contained in just one vessel.
Ollie's Tale may no longer have him as a main character, but it still goes on.
Today really isn't a sad day. It's a good one.
Miss you buddy!
Saturday, June 11, 2011
Pictures, Pictures and more Pictures
So here we are. 3 albums of pictures. A set of general April pictures, the huge birthday bash in Raleigh and the party in the mountains.
There are more. I haven't touched the general pics in May yet and I have TONS of video that I'd like to sort through.
In the meantime, please enjoy these snaps of your favorite internet twins. Thanks to Amanda Milloway for taking most of the pics in the Raleigh Birthday Album. She did a great job documenting their big day.
And thanks for checking in - we know that updates have gotten sporadic at best, but crazy work and busy twins keep us going non-stop. We hope to have more thoughts on just what that milestone meant to us, but that will have to wait a bit.
First a few cute pics during the month of April, highlighted by Bekka's father meeting the kids for the first time.
Next, the big (100+ in attendance) party in Raleigh for all those friends and acquaintances that have been such a huge help over the past few years with Oliver and these challenging little monkeys. Pay special attention to the gorgeous cake. (Thanks, Sarah! :)
And finally, some of Ollie's and the twins' biggest fans at the celebration on Powder Horn Mountain. Thanks so much for loving our children. All 3 of them.
That's it for now but you should see May and June soon and hopefully some video and new original blog content. Wouldn't that be great?
There are more. I haven't touched the general pics in May yet and I have TONS of video that I'd like to sort through.
In the meantime, please enjoy these snaps of your favorite internet twins. Thanks to Amanda Milloway for taking most of the pics in the Raleigh Birthday Album. She did a great job documenting their big day.
And thanks for checking in - we know that updates have gotten sporadic at best, but crazy work and busy twins keep us going non-stop. We hope to have more thoughts on just what that milestone meant to us, but that will have to wait a bit.
First a few cute pics during the month of April, highlighted by Bekka's father meeting the kids for the first time.
 |
| Penny and Isaak - April 2011 |
Next, the big (100+ in attendance) party in Raleigh for all those friends and acquaintances that have been such a huge help over the past few years with Oliver and these challenging little monkeys. Pay special attention to the gorgeous cake. (Thanks, Sarah! :)
 |
| Penny and Isaak's First Birthday Extravaganza |
And finally, some of Ollie's and the twins' biggest fans at the celebration on Powder Horn Mountain. Thanks so much for loving our children. All 3 of them.
 |
| Penny and Isaak - First Birthday on the Mountain |
That's it for now but you should see May and June soon and hopefully some video and new original blog content. Wouldn't that be great?
Wednesday, May 25, 2011
Babies' 1 year check up
So it was actually more of a 1 year and 3 week check up. Whatever!
This will be a quick update for ya'll, but it is an update. =)
Penny has 4 teeth on the bottom, 1 up top and at least 2 more on the way. Isaak has his top 2 "fangs" and his 2 middle teeth on the bottom. He'll chew on a teether for 30 minutes straight and is drooling like he's rabid. My best guess is at least 3 or 4 more are on their way.
Isaak loves puffs and Cheerios. Loves them so much that he eats them hand over fist...literally! As soon as he puts the o's from his right hand in his mouth, his left hand is following with the next bunch.
Penny started feeding herself puffs and Cheerios about a week or so ago. She liked eating them but preferred for you to feed them to her. Can you say "diva"? We've actually coined the term "P.S.T." for Penny. It stands for Penny Standard Time and it means that she does things at her pace and when she wants to do them. Thus far, this has included rolling over, self-feeding, and, ahem, bed time.
Neither of them is crawling yet...but it's coming. They both try to get up on their hands and knees. Isaak's not too worried about it all since he can roll. And roll and roll and roll...right under the couch! It's his favorite place to hide. Penny's great at sitting up unaided. Again, Isaak's not too worried. His sister may sit up and swipe his toy from him. But he'll roll past her and snag that same toy back from her on his way. Can I just say it is so entertaining to watch these two little people?
Anyhow...back to the stats from today's visit to the pediatrician. The percentages I've listed are based on their actual age (1 year) not their adjusted age (9.5 months).
Penny:
weight - 24 lbs, 2.5 ounces - 85%
length - 29 inches - 40%
head circumference - 47 cm - 90%
Isaak:
weight - 23 lbs, 7.5 ounces - 52%
length - 29.5 inches - 28%
head circumference - 48 cm - 85-90%
The pediatrician was, obviously, very happy.
Penny:
weight - 24 lbs, 2.5 ounces - 85%
length - 29 inches - 40%
head circumference - 47 cm - 90%
Isaak:
weight - 23 lbs, 7.5 ounces - 52%
length - 29.5 inches - 28%
head circumference - 48 cm - 85-90%
The pediatrician was, obviously, very happy.
And so are we!
Saturday, April 30, 2011
The Big Day - 1 Year Later
So this is it. The end of one short saga. The beginning of an odyssey.
At 6:35am on April 30, 2010, I made this short and to the point entry:
http://olliestale.blogspot.com/2010/04/bekka-back-for-c-section.html
Less than 2 hours later, it was "over." And it was just starting.
http://olliestale.blogspot.com/2010/04/babies-are-in-nicu-and-bekka-in.html
That evening, we actually had time to think and compose a longer entry. I'm not sure how I managed to make it sound so "together" and functional. I think my engineering brain just turned on at some point during that day and pushed me into clinical mode. That allowed me to step away from the abject terror lurking deep my id.
http://olliestale.blogspot.com/2010/04/babies-are-in-nicu-and-bekka-in.html
We can't give enough credit to our "hosts" at WakeMed. Prior to, and just after the delivery, their calm professionalism kept both of us focused and while frightened, also hopeful. We aren't exactly easily rattled people, but this wasn't exactly a normal situation.
Perhaps you might want to go back and revisit photos of that first week just to get an idea of what we were dealing with. When you can see more medical equipment than the skin of the little person in the incubator, it doesn't create a particular sense of comfort. Also it doesn't help that they looked a bit (or a lot) like ET when they were born.
As tense as that morning was, to my dying days I will remember Isaak opening his eyes at the sound of my voice in the post-delivery room. He was lying there with an oxygen tube in place and in a plastic sandwich baggie for warmth (not really, but that was what it looked like). And at the first sound of my voice, he cracked his eyes.
Amazing.
We owe a lot to so many people. Doctors, nurses, family, friends....
Thank you all for a brilliant first year.
At 6:35am on April 30, 2010, I made this short and to the point entry:
http://olliestale.blogspot.com/2010/04/bekka-back-for-c-section.html
Less than 2 hours later, it was "over." And it was just starting.
http://olliestale.blogspot.com/2010/04/babies-are-in-nicu-and-bekka-in.html
That evening, we actually had time to think and compose a longer entry. I'm not sure how I managed to make it sound so "together" and functional. I think my engineering brain just turned on at some point during that day and pushed me into clinical mode. That allowed me to step away from the abject terror lurking deep my id.
http://olliestale.blogspot.com/2010/04/babies-are-in-nicu-and-bekka-in.html
We can't give enough credit to our "hosts" at WakeMed. Prior to, and just after the delivery, their calm professionalism kept both of us focused and while frightened, also hopeful. We aren't exactly easily rattled people, but this wasn't exactly a normal situation.
Perhaps you might want to go back and revisit photos of that first week just to get an idea of what we were dealing with. When you can see more medical equipment than the skin of the little person in the incubator, it doesn't create a particular sense of comfort. Also it doesn't help that they looked a bit (or a lot) like ET when they were born.
As tense as that morning was, to my dying days I will remember Isaak opening his eyes at the sound of my voice in the post-delivery room. He was lying there with an oxygen tube in place and in a plastic sandwich baggie for warmth (not really, but that was what it looked like). And at the first sound of my voice, he cracked his eyes.
Amazing.
We owe a lot to so many people. Doctors, nurses, family, friends....
Thank you all for a brilliant first year.
Friday, April 29, 2011
The Contraction Countdown
We didn't know it, but the afternoon of April 29, 2010 saw contractions beginning that heralded the arrival of our children. We'd seen this show before as can be noted in the first post:
http://olliestale.blogspot.com/2010/04/contractions.html
A few hours later, Bekka was still experiencing contractions and the growing concern is evident in my post. I sounded calm, but I think we both knew that this was going to be "it".
http://olliestale.blogspot.com/2010/04/contractions-update.html
Sometimes I think life throws things at our family more like Phil Niekro. A nasty, wobbly knuckleball that approaches the plate with agonizing slowness. You can't hit the thing because of it's random motion but you have to wait and wait for it to get there. Often I think the more predictable Nolan Ryan fastball would be far, far preferable. It may come at you at 100mph, but at least it's over with...
http://olliestale.blogspot.com/2010/04/contractions.html
A few hours later, Bekka was still experiencing contractions and the growing concern is evident in my post. I sounded calm, but I think we both knew that this was going to be "it".
http://olliestale.blogspot.com/2010/04/contractions-update.html
Sometimes I think life throws things at our family more like Phil Niekro. A nasty, wobbly knuckleball that approaches the plate with agonizing slowness. You can't hit the thing because of it's random motion but you have to wait and wait for it to get there. Often I think the more predictable Nolan Ryan fastball would be far, far preferable. It may come at you at 100mph, but at least it's over with...
Thursday, April 28, 2011
A Year Ago Today...
A bit late on the post today thanks to a pre-6am start at work and traveling all day.
Last year at this time, we actually thought things were going pretty well. This post classifies the day as boring...wish that had lasted! Tomorrow would be when the excitement began - slowly at first, but then building.
http://olliestale.blogspot.com/2010/04/25-weeks-1-day-and-some-sweet-sweet.html
Today is the day that Ollie died. Not the date of course, but the relative time to his birthday - 2 days before. I've become increasingly anxious as we have approached this 1st birthday milestone with these little tykes. Today I'm glad that I was very, very busy and did not have time to ponder. Oliver didn't get to see his first birthday and all the cool birthday favors we had for him...he didn't get to see anything else after that day.
Saturday will be wonderful and uplifting. It will also be bittersweet. I feel bad about that for these little guys.
We'll love them, and squeeze them and look for butterflies.
Last year at this time, we actually thought things were going pretty well. This post classifies the day as boring...wish that had lasted! Tomorrow would be when the excitement began - slowly at first, but then building.
http://olliestale.blogspot.com/2010/04/25-weeks-1-day-and-some-sweet-sweet.html
Today is the day that Ollie died. Not the date of course, but the relative time to his birthday - 2 days before. I've become increasingly anxious as we have approached this 1st birthday milestone with these little tykes. Today I'm glad that I was very, very busy and did not have time to ponder. Oliver didn't get to see his first birthday and all the cool birthday favors we had for him...he didn't get to see anything else after that day.
Saturday will be wonderful and uplifting. It will also be bittersweet. I feel bad about that for these little guys.
We'll love them, and squeeze them and look for butterflies.
Tuesday, April 26, 2011
Last Year at this Time
A year ago we were at WakeMed in Raleigh, cautiously hoping that we might make it a few more weeks before getting to meet our children. Alas, that was not to be and very shortly our epic saga of preemie parenting was about to begin. Over the next few days, leading up to the twin's first birthday (!?!?!?!?!) I will post links to the post from the same day last year.
It's a fascinating experience and I almost feel disembodied reading my own words. The stories over the last year have been harrowing, joyful, volatile, cute - you name it. They (thankfully) don't carry the same emotional land mine triggers that re-reading Ollie's story so often reveals, but the memories are intense.
Last year on this date, we actually had a post from the lady herself. Without further ado, here's a rare update from Bekka (she was kinda busy at the time - lying down - but busy):
http://olliestale.blogspot.com/2010/04/quick-updatefrom-bekka.html
Feel free to browse back to the beginning of April for more of the insanity.
It's a fascinating experience and I almost feel disembodied reading my own words. The stories over the last year have been harrowing, joyful, volatile, cute - you name it. They (thankfully) don't carry the same emotional land mine triggers that re-reading Ollie's story so often reveals, but the memories are intense.
Last year on this date, we actually had a post from the lady herself. Without further ado, here's a rare update from Bekka (she was kinda busy at the time - lying down - but busy):
http://olliestale.blogspot.com/2010/04/quick-updatefrom-bekka.html
Feel free to browse back to the beginning of April for more of the insanity.
Thursday, April 14, 2011
If you are reading this, it is way too early in the morning...
...and Isaak is on his way to get his stoma closed. Finally.
His surgery is scheduled for ~7am and Bekka and Isaak are supposed to be at UNC by 6:30. Our wonderful, fantastic, incredible, (for)giving friend Cathy is baby sitting Penny, as I have a work engagement. Unbeknownst to Cathy until this afternoon, I have to be at work at 7am. Which means she has to be here by 6:30. Normally, 8am suffices, but not today.
Thank you! Your diet Cokes have chilled overnight in the fridge.
As to the actual procedure, we are ecstatic this is finally happening. As excited as we were by the incredible symbol of Isaak's improving health having his g-tube removal was - we would rather that sucker had stayed in. 2 1/2 weeks of constant gauze/maxi/tape/duoderm to no apparent effect on his stoma site has been frustrating and worrisome. A couple of quick stitches tomorrow should make this a fading memory and will be one more step towards a "normal" life for a special little boy and his worn-out parents.
His surgery is scheduled for ~7am and Bekka and Isaak are supposed to be at UNC by 6:30. Our wonderful, fantastic, incredible, (for)giving friend Cathy is baby sitting Penny, as I have a work engagement. Unbeknownst to Cathy until this afternoon, I have to be at work at 7am. Which means she has to be here by 6:30. Normally, 8am suffices, but not today.
Thank you! Your diet Cokes have chilled overnight in the fridge.
As to the actual procedure, we are ecstatic this is finally happening. As excited as we were by the incredible symbol of Isaak's improving health having his g-tube removal was - we would rather that sucker had stayed in. 2 1/2 weeks of constant gauze/maxi/tape/duoderm to no apparent effect on his stoma site has been frustrating and worrisome. A couple of quick stitches tomorrow should make this a fading memory and will be one more step towards a "normal" life for a special little boy and his worn-out parents.
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