Wednesday, December 18, 2013
Monday, September 9, 2013
First Day of School!
Better late than never...
August 26th got here so fast. Monday morning was crazy busy: I had to get ready for a doctor appointment (my last one! but that's another post), be up at the school 45 minutes early for the first PTO event of the year, get the kids ready an hour earlier than I normally would, and take the official first day of school photos
The kids bounced out of bed well before their alarms were set to go off. They must have been excited about finally getting out of the most boring house of the summer, where their mother was too uncomfortable to do anything fun with them and where they froze their butts off! They got themselves dressed, fed and ready for school all before 6:45 - which is completely unheard of. I waited until the sun came up to take the official back to school photos.
My big girl 3rd grader!
Cannot believe this little guy is in Kindergarten!
Everyone had a great first day and we are very happy with both kids' teachers. Finally, both kids are at the same school! Kindergarten gets out an hour and a half earlier than the rest of the school, so I still have to sit in two car lines in the afternoon, but for now at least drop off is all together.
Friday, August 16, 2013
the end....
So - I've got 2 weeks left. Maybe even less if this pregnancy keeps careening downhill like it has the last month. I'm now 38 weeks and miserable. I have the same condition I had with the other 2 pregnancies - Gestational Thrombocytopenia (yeah - and I spelled it right the first time I typed it). It's a platelet issue that causes my platelets to drop during pregnancy. It's more of a pain in the ass than anything. All it means is there's a possibility I won't be able to get an epidural if my platelets get too low. Then there's the Gestational Diabetes that, as it appears, I have given myself with all the face stuffing food I've consumed. Everyone acts like it's completely unacceptable to eat 1/2 a gallon of ice cream for dinner, seems perfectly fine to me. So, I've been checking my blood sugar 5 times a day. Can hardly eat carbs or sweets and am now on the strictest diet ever. I'm DYING without carbs. I can literally feel the weight coming off because I'm starving! But, I did lost some weight. I also have to go in for fetal non stress tests. Evidently that's normal procedure when you're fat and have no self control diagnosed with gestational diabetes.
To recap, I can't eat anything good, I have to drive down to the med center for a 20 minute test twice a week and I might have to give birth to a baby without drugs???? What. The. Hell. There are no words right now...
The good news is that the end is near, my friends. Every time I see my doctor, I beg and plead to get this over with as soon as possible - I'm not above bribery either. It doesn't work, but her office staff has been on the receiving end of some bad ass cupcakes that I, of course, can't eat.
I'm starting to get a little anxious about having another baby. Almost like first time parent jitters. I had to ask my friends with new babies the stupidest questions the other day. For example - How long do I burp a baby? I haven't done that in years, I don't remember. Do you stop when they're a few months old? Until they stop using a bottle? Drawing a blank. And labor - terrified this time. No reason - just scared. I know I've got this. It's like riding a bike, right?
I'm also starting to get nervous about having a healthy baby. My "Nick and I are healthy people, there's no reason to even think that something could be wrong with our child" theory on the last kid was GROSSLY underestimated. I'm kind of waiting on something to go wrong now, because something already did. I keep trying to remind myself that the odds are really low that Patrick will have what Sam has, but it's not far from my mind.
A few weeks ago I had the sweetest baby shower hosted by my sister and 3 dear friends. It was at the Tasting Room...and I thought it would be complete torture with everyone drinking wine around me, but it was great. It was so nice seeing everyone who joined us and those who traveled from out of town to attend. If there was any doubt about Patrick's name before that, it's gone now because almost everything I received was either embroidered with his name or had his monogram on it. I love it! It was perfect timing too, because I had forgotten about all those little things you need for a newborn - socks and hundreds of onesies because the kid will crap on most everything, burp cloths, bottles, drying racks, swaddling blankets...it looked like the entire store of Babies R Us threw up in my office. Oh, and those little things called diapers - totally forgot I needed those. Pics from the shower...
We have been VERY busy getting ready for our newest family member. Every room upstairs has been moved out of, repainted, moved back into by someone else and then redecorated. I seriously think we've done more to this house in the last 3 months than most people do to their houses in a lifetime. Feels good - but we're tired of the mess that goes with the DIY projects. For a few weeks, every item stored in each closet of the house was out and in the middle of the floor upstairs. I had to create a walking path just to get from room to room. We ended up throwing so much away. No more "...well, I guess if I keep this I'll use it for _________..." Nope. I'm sorry, but if we haven't touched it since I put it in the closet 4 years ago when we moved in, then it's going in the trash. Pics of all the kids' new rooms... Still need to hang some stuff on the walls.
To recap, I can't eat anything good, I have to drive down to the med center for a 20 minute test twice a week and I might have to give birth to a baby without drugs???? What. The. Hell. There are no words right now...
The good news is that the end is near, my friends. Every time I see my doctor, I beg and plead to get this over with as soon as possible - I'm not above bribery either. It doesn't work, but her office staff has been on the receiving end of some bad ass cupcakes that I, of course, can't eat.
I'm starting to get a little anxious about having another baby. Almost like first time parent jitters. I had to ask my friends with new babies the stupidest questions the other day. For example - How long do I burp a baby? I haven't done that in years, I don't remember. Do you stop when they're a few months old? Until they stop using a bottle? Drawing a blank. And labor - terrified this time. No reason - just scared. I know I've got this. It's like riding a bike, right?
I'm also starting to get nervous about having a healthy baby. My "Nick and I are healthy people, there's no reason to even think that something could be wrong with our child" theory on the last kid was GROSSLY underestimated. I'm kind of waiting on something to go wrong now, because something already did. I keep trying to remind myself that the odds are really low that Patrick will have what Sam has, but it's not far from my mind.
A few weeks ago I had the sweetest baby shower hosted by my sister and 3 dear friends. It was at the Tasting Room...and I thought it would be complete torture with everyone drinking wine around me, but it was great. It was so nice seeing everyone who joined us and those who traveled from out of town to attend. If there was any doubt about Patrick's name before that, it's gone now because almost everything I received was either embroidered with his name or had his monogram on it. I love it! It was perfect timing too, because I had forgotten about all those little things you need for a newborn - socks and hundreds of onesies because the kid will crap on most everything, burp cloths, bottles, drying racks, swaddling blankets...it looked like the entire store of Babies R Us threw up in my office. Oh, and those little things called diapers - totally forgot I needed those. Pics from the shower...
My awesome hostesses
Bestie!
St. Mark's friends from the city!
Traveled in from Dallas to celebrate. And made the cutest blanket and lovey to match P's room
Best PCB's ever! Kelly was here all summer from Florida visiting family/friends, but it makes me feel better to think she came in just for this. :)
(what is up with my hair here? a heads up on the do would have been nice)
We have been VERY busy getting ready for our newest family member. Every room upstairs has been moved out of, repainted, moved back into by someone else and then redecorated. I seriously think we've done more to this house in the last 3 months than most people do to their houses in a lifetime. Feels good - but we're tired of the mess that goes with the DIY projects. For a few weeks, every item stored in each closet of the house was out and in the middle of the floor upstairs. I had to create a walking path just to get from room to room. We ended up throwing so much away. No more "...well, I guess if I keep this I'll use it for _________..." Nope. I'm sorry, but if we haven't touched it since I put it in the closet 4 years ago when we moved in, then it's going in the trash. Pics of all the kids' new rooms... Still need to hang some stuff on the walls.
Caroline's new room. PS - that's the dresser I refinished. This room used to be the guest room.
Patrick's room. This was Sam's old room. The bedding is, of course, back ordered, and probably won't be here by the time P gets here. I'm trying not to stress about it.
Sam's new room. This was Caroline's old room and it used to be HOT PINK!
Took forever to repaint it green.
Sunday, August 11, 2013
Pigeon Forge, TN...long overdue post
Shortly after school ended (told ya it was really late), we rented a house for a week in the Smoky Mountains with Nick's family. The trip was pretty uneventful: No ER visits. No babies came. Everyone got out without killing each other still speaking to one another. No bear attacks (almost - true story!). Just lots of fun.
Because I crammed everything I could into our suitcases, I didn't bring my big camera. So, below is our vacation through the eyes of the greatest inventions of the century - the iPhone and Instagram. Enjoy!
Because I crammed everything I could into our suitcases, I didn't bring my big camera. So, below is our vacation through the eyes of the greatest inventions of the century - the iPhone and Instagram. Enjoy!
Our home for a week. It was a really nice house, but we all learned a hard lesson from this trip - pictures online can be very deceiving. We had a couple minor issues with the house, but it all ended up ok in the end, thanks to my fabulous complaining skills, we got some of our money back.
The Smoky Mountains are so pretty
My bear attack story: Shannon and Nick went for a run. I wanted to get out of the house for some fresh air, so since Dave didn't bring running shoes he got stuck walking with the pregnant chick walked with me. We're walking through the woods on a path and hear this low growl. It was more likely a badger or something, but a bear makes the story better. Needless to say, we got the hell out of there as fast as we could. Can't tell you how long it's been that I moved that fast. So there you have it - Dave and I were almost eaten by a bear.
So serious.
Went to Dollywood. Learned something new about Caroline: hates roller coasters. She stuck pretty close to mom and dad at this place. She didn't mind at all riding the smaller rides with her little bro at all.
Again, serious concentration driving the cars. He really thought he was in a race.
Everyone went whitewater rafting. Sam included - and if you know Sam this was a huge step for him! He's in the adult boat at the front. Nanny took really good care of him and found out the hard way that he doesn't like it when he's wet or dirty.
Did some sight seeing around the cabin. Right after this picture was taken, Caroline lost her flip flop and it went floating down the stream. Also noteworthy in this picture: the sound of the running water made everyone have to go to the bathroom so we didn't stay long... I got a few pictures of the girls trying to pose around Caroline doing the "pee-pee dance" - I'm sure she appreciates me sharing that with everyone
Went to the Dixie Stampede to celebrate Sam's birthday. Maybe I can hope by his 6th birthday that he will learn to look at the camera...His favorite part of the dinner? Eating with no utensils. Everyone had to pick up their food and eat with their hands like they did in the frontier days. It was interesting and very entertaining. A little advice if you ever go - bring a flask, evidently Dolly Parton doesn't drink. Ever. And neither should you.
Caroline went zip lining!
...so did Gia!
Went hiking up one of the Smoky Mountains. Surprisingly, it didn't put me into labor.
Our last day.
We all had fun and it was good to get away and relax. Probably won't do it next year, because of the baby. That adds a whole new level of excitement I'm not prepared for.
Thursday, July 11, 2013
6 months
6 months ago. It seems like yesterday we were sitting in a small exam room at the MDA clinic at Texas Children's. It was the day our world turned upside down. We knew it was bad when we caught a quick glimpse of Sam's CPK levels on the computer - 19,000. That was bad. I remember staring at Sam's neurologist and being mad at him for having to tell us the worst news a parent never wants to hear. How could he say that? Then after he told us, he kind of fell to the background and the room was filled with people. A child life specialist took Sam to let him play. Counselors came in. Social workers were there. An MDA representative was there. It was so dream-like, it didn't feel real. We were completely different people when we left the clinic that day. How could we ever be happy again knowing what Sam has to go through?
Fast forward to today and it still hurts. It really doesn't get easier. At least, not right now. We force ourselves to have happy days because we have no choice. We have to make every day the best day ever for Sam. And for us. We have bad days too, more than we used to prior to January 11, but it's a slow process. There's still a lot of crying in the shower or while driving alone. Duchenne consumes our daily lives. I can now honestly say that when I'm explaining DMD to people, I can get through without crying. There might be a little bit of eye watering, but I no longer make people extremely uncomfortable by sitting down and sobbing on them. I think my hardest moments, as someone who is now a DMD parent (the worst club in the world), is that no one understands. Our parents don't understand. Our siblings don't understand. Our friends don't understand. Feeling like we've been dumped on a deserted island comes with the territory, I suppose.
Other hard moments come and go when friends or even acquaintances tell me "I've been praying for Sam". I love that people we hardly know take time out of everything that is important to them to pray for us. But some days a prayer isn't enough. Some days I don't want to hear that - I want you to find someone to save my son. Obviously it's not rational. The reality is having hope and prayer is the only thing that anyone can do. It's all we, as his parents can do. Trust me, no one has prayed harder than I for some kind of mistake or to just let me take Sam's place in all of this. At this point in this process, faith and prayer only goes so far with me. If I can't touch it or see it, it's not going to help us today.
Some challenges we've faced in talking about DMD is that people think we're talking about MS. Or that people immediately dismiss this like Sam has the flu or something. This is a very real, horrible disease and there is nothing that anyone can suggest to make it go away. Explaining to people that there is no cure seems baffling to them. Nick and I read an article several months back about a dad whose son has Duchenne. He wrote these words like he was looking right at us: "having a son with DMD is like watching him drown and not jumping in to save him". Our son is drowning and there's nothing we can do. That is exactly what this is. Recently, we met a couple whose daughter has diabetes. And I was jealous! I can take diabetes over this any day. As horrible as what I'm about to write sounds, wishing Sam had cancer crosses our minds frequently, too. At least then we could fight, it would be awful, but he'd have a chance.
In an effort to keep Sam healthy and as safe from injury as possible, I have come up with, at times, the most ridiculous house rules. Sit on the furniture correctly (well, this one is pretty normal). Slow down. Always be really careful. Bedtime is strictly at 7:30 (the steroids make him super grouchy and sleep is the only thing that helps). Don't touch each other while running or playing. Everyone off the stairs while Sam is on them. There are more, but you get the gist....I hate myself for being this person! If he starts crying, I have no idea why and so I assume the worst immediately. I've always been wound a little tight to begin with, but DMD has pushed me to a whole new level of crazy. Play dates at our house are definitely not the same anymore. I worry that this will start to effect my friendships. Who wants to go hang out at the crazy lady's house? - no one most likely.
Nick and I are seeing a grief counselor. She is really helpful. She has listened to us cry, and get mad, and (start to) learn to accept this. As wonderful as she is, she has admitted that she has no idea what we are going through. She's helping us be good parents, be good children and stay a solid couple all while grieving. And it's not easy. No one knows better what I am going through than Nick; and vice versa. She's helping us see that this isn't just happening to us. It's happening to our family, our friends, Sam's teachers, Sam's friends, the community. Which is why, I like to think, people don't say much more than "I'm sorry". Or in most instances, utter silence - not a phone call or an email. It's hard for them too, and learning to understand that has been tough. We were told it's very important for Sam to form close friendships early on. It's easier for his friends he's known for longer to know that while his body is getting weaker, he's still Sam. He's still their buddy, just now he's slower, or eventually, in a wheelchair. We have had a lot more friends come to the house to play in the recent months. Love hearing him play with his friends (and not just playing with sister and her friends).
Speaking of Caroline, she is such a caring and concerned sister. It didn't take long for her to grasp the whole picture. She checks on him at night. Helps put his leg braces on when we have babysitters. Tucks him in his bed after us. She recently started talking to her friends about it. Which is sometimes concerning because she tells them EVERYTHING - then you see the look of horror and confusion on the friends' faces. Once I figure out what they're talking about, I usually interject with "We really don't know what's going to happen" or "We hope really soon there will be a cure". It's ok to talk to your children about Sam - he knows he has a muscle disease. He doesn't know the end result of the disease yet, but there's no need to tell any young child that. Caroline just happened to figure it out. Unfortunately, it won't be too much longer until Sam starts to question why he's different. It's a day I think about all the time. It breaks my heart that one day soon Nick and I will have to confirm that to him.
Nick and I have been to every website about Duchenne. I know more than I care to admit about genetics and statistics. We've listened to every drug therapy web chat. Researched government funded health plans and clinical trials. It feels like a job just trying to keep up with the breakthroughs and news that comes out about DMD. Some of the news we find is encouraging. Some of it is not. We have to have hope that before Duchenne takes over, there will be a cure. It's all we have. We have hope and time on our side. For right now steroids, nightly leg braces, vitamin supplements, therapy and physical activity help keep him as strong and physically capable as possible while we wait.
Thank you to everyone who has supported PPMD or MDA. Your donations are touching. Your kind words and love help us on the darkest days. Your prayers are always appreciated. Your friendship is irreplaceable. I hope my yearly update will have some happier moments and more news that will help Sam and all boys with DMD.
Fast forward to today and it still hurts. It really doesn't get easier. At least, not right now. We force ourselves to have happy days because we have no choice. We have to make every day the best day ever for Sam. And for us. We have bad days too, more than we used to prior to January 11, but it's a slow process. There's still a lot of crying in the shower or while driving alone. Duchenne consumes our daily lives. I can now honestly say that when I'm explaining DMD to people, I can get through without crying. There might be a little bit of eye watering, but I no longer make people extremely uncomfortable by sitting down and sobbing on them. I think my hardest moments, as someone who is now a DMD parent (the worst club in the world), is that no one understands. Our parents don't understand. Our siblings don't understand. Our friends don't understand. Feeling like we've been dumped on a deserted island comes with the territory, I suppose.
Other hard moments come and go when friends or even acquaintances tell me "I've been praying for Sam". I love that people we hardly know take time out of everything that is important to them to pray for us. But some days a prayer isn't enough. Some days I don't want to hear that - I want you to find someone to save my son. Obviously it's not rational. The reality is having hope and prayer is the only thing that anyone can do. It's all we, as his parents can do. Trust me, no one has prayed harder than I for some kind of mistake or to just let me take Sam's place in all of this. At this point in this process, faith and prayer only goes so far with me. If I can't touch it or see it, it's not going to help us today.
Some challenges we've faced in talking about DMD is that people think we're talking about MS. Or that people immediately dismiss this like Sam has the flu or something. This is a very real, horrible disease and there is nothing that anyone can suggest to make it go away. Explaining to people that there is no cure seems baffling to them. Nick and I read an article several months back about a dad whose son has Duchenne. He wrote these words like he was looking right at us: "having a son with DMD is like watching him drown and not jumping in to save him". Our son is drowning and there's nothing we can do. That is exactly what this is. Recently, we met a couple whose daughter has diabetes. And I was jealous! I can take diabetes over this any day. As horrible as what I'm about to write sounds, wishing Sam had cancer crosses our minds frequently, too. At least then we could fight, it would be awful, but he'd have a chance.
Nick and I are seeing a grief counselor. She is really helpful. She has listened to us cry, and get mad, and (start to) learn to accept this. As wonderful as she is, she has admitted that she has no idea what we are going through. She's helping us be good parents, be good children and stay a solid couple all while grieving. And it's not easy. No one knows better what I am going through than Nick; and vice versa. She's helping us see that this isn't just happening to us. It's happening to our family, our friends, Sam's teachers, Sam's friends, the community. Which is why, I like to think, people don't say much more than "I'm sorry". Or in most instances, utter silence - not a phone call or an email. It's hard for them too, and learning to understand that has been tough. We were told it's very important for Sam to form close friendships early on. It's easier for his friends he's known for longer to know that while his body is getting weaker, he's still Sam. He's still their buddy, just now he's slower, or eventually, in a wheelchair. We have had a lot more friends come to the house to play in the recent months. Love hearing him play with his friends (and not just playing with sister and her friends).
Speaking of Caroline, she is such a caring and concerned sister. It didn't take long for her to grasp the whole picture. She checks on him at night. Helps put his leg braces on when we have babysitters. Tucks him in his bed after us. She recently started talking to her friends about it. Which is sometimes concerning because she tells them EVERYTHING - then you see the look of horror and confusion on the friends' faces. Once I figure out what they're talking about, I usually interject with "We really don't know what's going to happen" or "We hope really soon there will be a cure". It's ok to talk to your children about Sam - he knows he has a muscle disease. He doesn't know the end result of the disease yet, but there's no need to tell any young child that. Caroline just happened to figure it out. Unfortunately, it won't be too much longer until Sam starts to question why he's different. It's a day I think about all the time. It breaks my heart that one day soon Nick and I will have to confirm that to him.
Nick and I have been to every website about Duchenne. I know more than I care to admit about genetics and statistics. We've listened to every drug therapy web chat. Researched government funded health plans and clinical trials. It feels like a job just trying to keep up with the breakthroughs and news that comes out about DMD. Some of the news we find is encouraging. Some of it is not. We have to have hope that before Duchenne takes over, there will be a cure. It's all we have. We have hope and time on our side. For right now steroids, nightly leg braces, vitamin supplements, therapy and physical activity help keep him as strong and physically capable as possible while we wait.
Thank you to everyone who has supported PPMD or MDA. Your donations are touching. Your kind words and love help us on the darkest days. Your prayers are always appreciated. Your friendship is irreplaceable. I hope my yearly update will have some happier moments and more news that will help Sam and all boys with DMD.
Wednesday, July 10, 2013
Random things I think about while getting up to pee for the 500th time in the middle of the night
It's that point in the pregnancy where no matter how long before bed I cut myself off from drinking water, peeing numerous times during the night becomes impossible to avoid. While I'm up, I'm up for about an hour b/c I can't not think about anything while peeing. Then the brain starts to warm up and I can't turn it off, so I'm up thinking about the STUPIDEST stuff on the planet. It's very random, but here are some of the things that cross my mind.
1. I think about this one more often than you'd think: 9 months my ass. It's 10 months. At least I'm not pregnant for 22 months like elephants. But 10 months is long enough - it's practically a year! Right now it feels like I've been pregnant as long as elephants, but I'm getting close. Why do I know this strange fact about elephants? We can thank being members at the Houston Zoo for 8 years for that one.
2. I'm going to write a book called "Shit you don't say to pregnant women. EVER". What is up with the rude things total strangers say to pregnant women? My ankles look great! Should have yelled at the old lady. Lately I've been told I must be having twins b/c "I'm huge", told my ankles are swollen, been told I must be having a girl because I'm carrying so low, asked if I was dilated yet...really!!! Look for that gem on the NY Times best seller lists.
3. I know it's a strange thing to think about at 3 am on the toilet, but no one has died this pregnancy. (and no, I'm not talking about Nick) Every time I get pregnant, a grandparent dies. I have one left and so does Nick - so I hope they make it long enough to meet baby P.
4. Every time I get up, it appears I'm adding things to the 'honey do' list for Nick. Last night I decided all the windows in the house need to be washed. Inside and out. Like right now.
5. A Whataburger with onion rings sounds really good. Is this something I should wake Nick up for? Will he be pissed? Or will he roll out of bed and get me one? It's a game I really don't want to play in the wee hours of the morning.
6. Did I forget to take the clothes out of the washing machine? Did I forget to shut the garage door? Where is my debit card? Is the alarm on? Did I just hear the kids walking around - maybe I should check on them. Did I forget to feed the dog today? I think I forgot to take my prenatal vitamin....ugh - it never ends.
7. If the dog farts, sneezes, breathes loudly or snores one more time, I will kill him! How would I do that and where would I hide the body? (Nick's name is also interchangeable here too)
8. Sam talks a lot about death. Do you think he knows? He asks all the time when he's going to die. I bet he knows. I think about that one a lot too.
9. Need to remember to put _____________ on the calendar tomorrow. Do I ever remember to do it? of course not!
10. Why is flushing the toilet the loudest thing ever at 2 AM? I swear I just woke up the whole house.
So...that's most of the stuff I think about. Like I said all random, and surprisingly, all stuff I thought about last night! Most of it is a completely normal thought process, some of it is kind of messed up.
1. I think about this one more often than you'd think: 9 months my ass. It's 10 months. At least I'm not pregnant for 22 months like elephants. But 10 months is long enough - it's practically a year! Right now it feels like I've been pregnant as long as elephants, but I'm getting close. Why do I know this strange fact about elephants? We can thank being members at the Houston Zoo for 8 years for that one.
2. I'm going to write a book called "Shit you don't say to pregnant women. EVER". What is up with the rude things total strangers say to pregnant women? My ankles look great! Should have yelled at the old lady. Lately I've been told I must be having twins b/c "I'm huge", told my ankles are swollen, been told I must be having a girl because I'm carrying so low, asked if I was dilated yet...really!!! Look for that gem on the NY Times best seller lists.
3. I know it's a strange thing to think about at 3 am on the toilet, but no one has died this pregnancy. (and no, I'm not talking about Nick) Every time I get pregnant, a grandparent dies. I have one left and so does Nick - so I hope they make it long enough to meet baby P.
4. Every time I get up, it appears I'm adding things to the 'honey do' list for Nick. Last night I decided all the windows in the house need to be washed. Inside and out. Like right now.
5. A Whataburger with onion rings sounds really good. Is this something I should wake Nick up for? Will he be pissed? Or will he roll out of bed and get me one? It's a game I really don't want to play in the wee hours of the morning.
6. Did I forget to take the clothes out of the washing machine? Did I forget to shut the garage door? Where is my debit card? Is the alarm on? Did I just hear the kids walking around - maybe I should check on them. Did I forget to feed the dog today? I think I forgot to take my prenatal vitamin....ugh - it never ends.
7. If the dog farts, sneezes, breathes loudly or snores one more time, I will kill him! How would I do that and where would I hide the body? (Nick's name is also interchangeable here too)
8. Sam talks a lot about death. Do you think he knows? He asks all the time when he's going to die. I bet he knows. I think about that one a lot too.
9. Need to remember to put _____________ on the calendar tomorrow. Do I ever remember to do it? of course not!
10. Why is flushing the toilet the loudest thing ever at 2 AM? I swear I just woke up the whole house.
So...that's most of the stuff I think about. Like I said all random, and surprisingly, all stuff I thought about last night! Most of it is a completely normal thought process, some of it is kind of messed up.
Tuesday, June 25, 2013
Kindergarten!
Really, how did we get here???!!! Wasn't he just a baby? Talking about kindergarten for Sam has Nick and me a little stressed. (well, maybe not so much Nick). But we're at a crossroads with deciding whether or not to put him in public or private school.
Sam's situation is a little more complicated than the average kindergartner. Sam misses a lot of school due to therapy and dr. appointments, and since he's got DMD - there are certain things about his education that need to be modified: like PE, recess and transitioning to and from the classroom. So, we've met with the school district/school admin and had an ARD meeting and discussed IEP's....geez - the kid hasn't even started school yet! There's already so much information and it's still summer.
Last year, we had him at Catholic school and absolutely loved it. The school goes all the way up to 8th grade. It's small - he would be 1 out of 30 kindergartners. He's already way more ahead than where Caroline was when she started kinder. But it's private school. It's expensive. They don't have to make any educational accommodations because of Sam's disease. Meaning they can hold him back b/c he's missed a lot of school. Or they don't have to let him take breaks during PE. They don't have to have a plan to help him transition to the cafeteria or to recess. I do feel like the level of education is better than it is at the public school, especially after my extreme hatred for 2nd grade this past year (I'll save that rant for another post, but we're giving it one more year).
The public school in the neighborhood is close to home. It's free. He'd have a wonderful kindergarten teacher - we hope the same one who had Caroline b/c we loved her. He'd have an IEP that gives him the tools and services he needs to succeed and to accommodate his disease. But it's crowded - he would be 1 of 120 kids. Someone has to watch him all the time at recess and PE. I know, because I've been on the playground where there's 3 classes on the playground and one teacher watching. There's no way there can be a set of eyes on him all the time, but if he falls we need to know exactly what happened so we can determine if it was because someone pushed him or if his DMD is getting worse. Then what happens after kinder? First grade was ok, but 2nd grade sucked so bad. Are we going to go down this same road with Sam? I know he'll be taken care of, but the number of kids in that school terrifies me and the things that can go wrong (and already have) can happen again too.
Granted, having a newborn with 2 kids at 2 different schools is so much harder than it has to be, so obviously sending them both to one school is the best choice. But we really just don't know what to do. Nick is a product of private school. I am not. I turned out ok, right? He's ready to just yank both kids and put them in private school anyway; I think that decision is premature. We've weighed the pros and cons, but at the end of the day it all seems to balance out.
So for now, Sam is enrolled at 2 schools until we make up our minds. He really wants to go to sissy's school. Just don't know if that's the right decision for him right now.
Sam's situation is a little more complicated than the average kindergartner. Sam misses a lot of school due to therapy and dr. appointments, and since he's got DMD - there are certain things about his education that need to be modified: like PE, recess and transitioning to and from the classroom. So, we've met with the school district/school admin and had an ARD meeting and discussed IEP's....geez - the kid hasn't even started school yet! There's already so much information and it's still summer.
Last year, we had him at Catholic school and absolutely loved it. The school goes all the way up to 8th grade. It's small - he would be 1 out of 30 kindergartners. He's already way more ahead than where Caroline was when she started kinder. But it's private school. It's expensive. They don't have to make any educational accommodations because of Sam's disease. Meaning they can hold him back b/c he's missed a lot of school. Or they don't have to let him take breaks during PE. They don't have to have a plan to help him transition to the cafeteria or to recess. I do feel like the level of education is better than it is at the public school, especially after my extreme hatred for 2nd grade this past year (I'll save that rant for another post, but we're giving it one more year).
The public school in the neighborhood is close to home. It's free. He'd have a wonderful kindergarten teacher - we hope the same one who had Caroline b/c we loved her. He'd have an IEP that gives him the tools and services he needs to succeed and to accommodate his disease. But it's crowded - he would be 1 of 120 kids. Someone has to watch him all the time at recess and PE. I know, because I've been on the playground where there's 3 classes on the playground and one teacher watching. There's no way there can be a set of eyes on him all the time, but if he falls we need to know exactly what happened so we can determine if it was because someone pushed him or if his DMD is getting worse. Then what happens after kinder? First grade was ok, but 2nd grade sucked so bad. Are we going to go down this same road with Sam? I know he'll be taken care of, but the number of kids in that school terrifies me and the things that can go wrong (and already have) can happen again too.
Granted, having a newborn with 2 kids at 2 different schools is so much harder than it has to be, so obviously sending them both to one school is the best choice. But we really just don't know what to do. Nick is a product of private school. I am not. I turned out ok, right? He's ready to just yank both kids and put them in private school anyway; I think that decision is premature. We've weighed the pros and cons, but at the end of the day it all seems to balance out.
So for now, Sam is enrolled at 2 schools until we make up our minds. He really wants to go to sissy's school. Just don't know if that's the right decision for him right now.
five
Sam turned 5 on June 18th, while we were on vacation - so this post is a little late.
Turning 5 was a big deal for me when Caroline turned 5. It meant that she was no longer a baby. It meant that she was starting kindergarten. She was a big girl. Sam turning 5 had a total different affect on me. He's still my baby (for 9 weeks, 4 days and 13 hours - but who's counting?). Even though he starts kindergarten in August (don't ask me where yet, because as of right now he's enrolled at 2 different schools), it feels like it took forever for Sam to get to 5.
Birthdays are supposed to be happy and I don't feel that at all. To me, Sam's birthdays are an all-to-quick trip back to reality that our time with him is running out. I don't even know how many birthdays we'll be able to celebrate with him. 5 more? 10 more? The unknown kills me. Every day. But June 18th was the worst day to be reminded of the unknown.
He told me when he's five, he wants to ride a bike without training wheels. He just recently, thanks to OT, starting getting himself dressed. He's no longer afraid to take showers - really don't understand why he was afraid of them in the first place. He turned into a big boy overnight. We love him so much. He is hilarious, and sweet (and sort of mean) and gives the best hugs ever.
Since we were in Tennessee for his birthday, we celebrated with family. Went to the Dixie Stampede (which is like going to Medieval Times, but western themed). It was fun. Sam really thought all those people there were there for his birthday, especially when they all sang him happy birthday.
So, he wants Chuck-E-Cheese for his birthday - and even though I despise the place and think it's a cesspool of germs - we'll go to CEC and like it (then bathe in bleach when we get home). Because that's what Sam wants to do for turning 5. Because he's a big boy.
Turning 5 was a big deal for me when Caroline turned 5. It meant that she was no longer a baby. It meant that she was starting kindergarten. She was a big girl. Sam turning 5 had a total different affect on me. He's still my baby (for 9 weeks, 4 days and 13 hours - but who's counting?). Even though he starts kindergarten in August (don't ask me where yet, because as of right now he's enrolled at 2 different schools), it feels like it took forever for Sam to get to 5.
Birthdays are supposed to be happy and I don't feel that at all. To me, Sam's birthdays are an all-to-quick trip back to reality that our time with him is running out. I don't even know how many birthdays we'll be able to celebrate with him. 5 more? 10 more? The unknown kills me. Every day. But June 18th was the worst day to be reminded of the unknown.
He told me when he's five, he wants to ride a bike without training wheels. He just recently, thanks to OT, starting getting himself dressed. He's no longer afraid to take showers - really don't understand why he was afraid of them in the first place. He turned into a big boy overnight. We love him so much. He is hilarious, and sweet (and sort of mean) and gives the best hugs ever.
Since we were in Tennessee for his birthday, we celebrated with family. Went to the Dixie Stampede (which is like going to Medieval Times, but western themed). It was fun. Sam really thought all those people there were there for his birthday, especially when they all sang him happy birthday.
Maybe this year, he'll learn to look at the camera when I'm taking pictures...
So, he wants Chuck-E-Cheese for his birthday - and even though I despise the place and think it's a cesspool of germs - we'll go to CEC and like it (then bathe in bleach when we get home). Because that's what Sam wants to do for turning 5. Because he's a big boy.
Happy Birthday, Samuel!
Wednesday, June 12, 2013
eight
Caroline is 8! Happy Birthday Caroline Mae. (for the record, I started writing this post the week of her birthday, just now getting around to posting it)
She currently is into this preteen, obnoxious phase where she grunts and moans in protest if she doesn't like what she hears or is told to do. It's fun. She is super smart. Sweet when she wants to be. Creative. Well behaved. A great big sister (again, when she wants to be). Caring and sensitive. We love her so much.
Being 8 years old got me thinking. In 2 years, she'll be at the age where I told her she could get her ears pierced. She is half the age she will be when she starts driving. And in 10 years, she'll be leaving us for college. Sounds like a long ways away at the moment, but 10 years ago Nick and I got married and it seems like yesterday....and here come the heart palpitations again.
Because I'mthe worst mom ever pregnant and too pissy to have kids in my house for a birthday party, we compromised with sometime this summer I'll take Caroline and a few of her friends horseback riding, out to lunch and possibly pedicures - she settled for that. Don't start feeling bad for her getting the short end of the stick in this deal, because the other agreement was that when she moved into a smaller room (so the boys can share a bathroom) that we would redecorate, get her new furniture and repaint everything. And as luck would have it, she has very expensive taste. Caroline isn't the only one not getting a party this year, Sam isn't either. I'm too tired to have house guests, let alone little house guests. Whether it's just for a couple hours or overnight...not happening this year.
I digress....
Anyhoo - Happy Birthday Sweet Caroline! (she hates that song by the way)
She currently is into this preteen, obnoxious phase where she grunts and moans in protest if she doesn't like what she hears or is told to do. It's fun. She is super smart. Sweet when she wants to be. Creative. Well behaved. A great big sister (again, when she wants to be). Caring and sensitive. We love her so much.
Being 8 years old got me thinking. In 2 years, she'll be at the age where I told her she could get her ears pierced. She is half the age she will be when she starts driving. And in 10 years, she'll be leaving us for college. Sounds like a long ways away at the moment, but 10 years ago Nick and I got married and it seems like yesterday....and here come the heart palpitations again.
Because I'm
I digress....
Anyhoo - Happy Birthday Sweet Caroline! (she hates that song by the way)
We shall call him...
Patrick Thomas.
We really liked the name Patrick. And it seems to go well with the names of the other kiddos...traditional and not too popular.
Thomas is my maiden name.
So far he's being a total pain in the ass and doesn't sit still. ever. He's also still breech, so when he kicks me, he kicks me in the hoo-ha. From the inside. 11 more weeks 2 days and 17 hours. I can do this.
We can't wait to meet him though. Sam talks to him all the time and pretends that Patrick talks back. Today he said "I think Patrick is hungry". Why? Because Patrick told him so. Hate to break it so Sam, but there's no way this kid is hungry b/c I feed it all the time.
Here's what I'm most excited about finally agreeing on a name: monograms. I love personalizing stuff. I found these cute monogrammed pacifiers on zazzle.com that I know Patrick will not be able to live without. I also have a slight obsession with jon-jons. Particularly, monogrammed ones. In my opinion, nothing cuter than a little boy wearing jon-jons. So between now and D-Day, I will try my best at online shopping and sneaking my finds into the house unnoticed. Good thing I have my own embroidery machine.
Another obsession I have is diaper bags. Unfortunately for Nick, my taste in bags has been refined in the last 5 years, thanks to my BFFs Louis and Gucci. (yeah, that's a hint). This is my favorite part of preparing for baby....shopping - shocking, I know; picking out the perfect going home outfit; putting the crib together and getting all the bedding in it; designing the nursery.... For a split second, it makes me forget how uncomfortable I am.
Went to see the Dr. the other day and everything looks good. Blood pressure was a little high, but with Sam, summer, vacation, Nick's new business venture, and all of the projects we have going on around here doc gave me a little break. She did not, however, give me a break on how much weight I gained in 4 weeks. But if you look at it cumulatively, I've only gained a pound a week - somehow explaining it to her that way wasn't amusing or up for discussion. I did point out that it is WAY better than Caroline's pregnancy....where I got so fat I can't recognize "who that fat chick is" in pictures. 74 pounds. Not only did it really look like I ate a baby, it unfortunately looked like I ate it's family too.
Still lots to do around here. Painting...will it ever end? I feel like I live at Home Depot - I'm there all the time! The good thing about that is mama gets it done when Nick sends me by myself to HD. Its amazing how helpful everyone is when you have a pregnant woman waddling around your store: I don't have to search for someone to ask a question, people are putting heavy things in my cart for me and employees carry things out to my car...maybe they're just worried about a full out pregnancy meltdown in the store?
Speaking of painting, look what I did? All by myself (with the exception of the varnishing b/c the odor was too strong)
We really liked the name Patrick. And it seems to go well with the names of the other kiddos...traditional and not too popular.
Thomas is my maiden name.
So far he's being a total pain in the ass and doesn't sit still. ever. He's also still breech, so when he kicks me, he kicks me in the hoo-ha. From the inside. 11 more weeks 2 days and 17 hours. I can do this.
We can't wait to meet him though. Sam talks to him all the time and pretends that Patrick talks back. Today he said "I think Patrick is hungry". Why? Because Patrick told him so. Hate to break it so Sam, but there's no way this kid is hungry b/c I feed it all the time.
Here's what I'm most excited about finally agreeing on a name: monograms. I love personalizing stuff. I found these cute monogrammed pacifiers on zazzle.com that I know Patrick will not be able to live without. I also have a slight obsession with jon-jons. Particularly, monogrammed ones. In my opinion, nothing cuter than a little boy wearing jon-jons. So between now and D-Day, I will try my best at online shopping and sneaking my finds into the house unnoticed. Good thing I have my own embroidery machine.
Another obsession I have is diaper bags. Unfortunately for Nick, my taste in bags has been refined in the last 5 years, thanks to my BFFs Louis and Gucci. (yeah, that's a hint). This is my favorite part of preparing for baby....shopping - shocking, I know; picking out the perfect going home outfit; putting the crib together and getting all the bedding in it; designing the nursery.... For a split second, it makes me forget how uncomfortable I am.
Went to see the Dr. the other day and everything looks good. Blood pressure was a little high, but with Sam, summer, vacation, Nick's new business venture, and all of the projects we have going on around here doc gave me a little break. She did not, however, give me a break on how much weight I gained in 4 weeks. But if you look at it cumulatively, I've only gained a pound a week - somehow explaining it to her that way wasn't amusing or up for discussion. I did point out that it is WAY better than Caroline's pregnancy....where I got so fat I can't recognize "who that fat chick is" in pictures. 74 pounds. Not only did it really look like I ate a baby, it unfortunately looked like I ate it's family too.
Still lots to do around here. Painting...will it ever end? I feel like I live at Home Depot - I'm there all the time! The good thing about that is mama gets it done when Nick sends me by myself to HD. Its amazing how helpful everyone is when you have a pregnant woman waddling around your store: I don't have to search for someone to ask a question, people are putting heavy things in my cart for me and employees carry things out to my car...maybe they're just worried about a full out pregnancy meltdown in the store?
Speaking of painting, look what I did? All by myself (with the exception of the varnishing b/c the odor was too strong)
We had this old dresser of Nick's when he was a kid. (Sorry - got a little excited and took the drawers off before I remembered to take the official before picture).
Turned it into this! Used the Zinser Stain Sealer stuff and painted over the original stained wood. Didn't have to sand a thing! Then painted it turquoise, put some updated knobs/pulls on it and now it's ready for Caroline's new room!
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