Bryce is going to be having a minor surgery tomorrow, and this mama is a little nervous. The surgery itself is pretty minor, but it's the anesthesia that worries me.
A year ago, when Bryce finally had gained some head control, we noticed he was often tipping his head to the right. We assumed it might be torticollis, and contacted his physical therapist. She started treating it as torticollis, but soon noticed it didn't present as a normal torticollis. He had full range of motion in his neck and back, and any tightness seemed to be a result of the tipping, rather than tipping as a result of tightness, like in torticollis. Within a few months, his PT suggested the tipping may be related to something ocular....so off to the opthamologist we went! The doctor agreed that it probably was ocular, but it took about four trips to see him before we were finally able to narrow down exactly what was happening.
Bryce has most likely been tipping his head in order to see straight. He has a slight misalignment in his left eye, so he probably sees a little double when holding his head straight. The smart little bugger figured out how to see clearly by tipping his head, and he has actually saved his own vision in doing so :) If he was always seeing double, he mostly likely would have overcompensated with his other eye. Luckily, he still has perfect vision.
Tomorrow during his surgery, the doctor will shorten one muscle in his left eye so it will match it's "pair", and therefore fix the misalignment. Hopefully he'll soon discover that he no longer has to tip his head in order to see clearly. I'd love to have a picture of that boy with his head straight!
His doctor is apparently one of the best pediatric opthamologists around and the surgery will take place at Children's Hospital of MN, so he will be in good hands. If all goes as planned, he should only be under anesthesia for about 30 minutes. It will be hard to see that little babe in a hospital bed, getting put under. Hopefully the half hour will go quickly and he won't have any ill effects afterwards.
He is such a trooper and recovery isn't supposed to be a big deal, so I'm sure he'll be fine. If you find yourself looking at the clock tomorrow around 11:30, think of Bryce and send a little positive vibe our way. Hopefully next time I write, I'll have a picture of a little babe with a STRAIGHT head!
Take care and stay warm! xoxo
Thursday, December 5, 2013
Tuesday, November 26, 2013
Brothers
Happy Thanksgiving! It's hard to believe it's the end of November already, although it feels as though winter is here with the cold temperatures we've been having. Fall has come and gone and things have been really busy around here--the boys are growing and learning like crazy. It is so fun to watch their relationship grow as Bryce is becoming more and more able to interact and play. For a long time, Connor was pretty indifferent about Bryce. He completely ignored him for most of Bryce's first year. He finally started considering him part of the family and paying a little attention to him this summer. Now, the past month or so, they are becoming buddies. Connor gives him hugs regularly, loves making Bryce smile, includes him in our family tickle/wrestling matches, and always seems to want him around. It is so fun to see; both Bryce's ability to play, and Connor's acceptance.
Connor turned four on November 15th. Four seems so grown up, and I know next year will be even harder for me. Once he turns five, his babyhood is REALLY gone :( 90% of the time, Connor is such a pleasure to parent. While his incessant talking sometimes gets old (like when he talked constantly for the first 45 minutes we were awake this morning....seriously didn't stop for 45 minutes), he is so funny and I remind myself to enjoy the fact that he has an imagination, and that he wants to talk to me. I know, sadly, that both of those things will change as he grows up. His vocabulary continues to surprise me, and his memory is a steel trap. His favorite show right now is Peppa Pig, which is a British cartoon on Nick Jr. Since he started watching that show, he often slips into a British accent, which is hilarious. He spoke to our pediatrician with his British accent, and the doctor agreed that it's great to have a few accents in your back pocket :)
Connor has always been a kid with very specific interests. If it interests him, he immerses himself in it. If it doesn't interest him, good luck holding his attention. Lately, he has been very interested in learning to read. He has always loved letters and books, but now that he is getting older, he wants to be able to read himself. He knows many sight words, and has been more interested in sounding words out. I'm so excited by this, and have been trying to get him to do some workbooks with me. He wants to read, but has no interest in writing the letters, so doing workbooks has proven difficult. I am trying to find a way to teach him to read that will keep his interest...I may need to resort to computer programs. His preschool-age stubborn streak certainly shows up occasionally, and I am having trouble adjusting to him not taking a nap, but otherwise he is just a joy. He says the funniest things!
Bryce has also been learning and changing like crazy. Until the end of August, he couldn't even sit up unassisted, and now--just a few months later--he is belly crawling (quickly!) to get around, sitting well on his own, and has even started to sit himself up (finally). His newest accomplishment is climbing. He climbs all day long. His early intervention team brought over a climbing toy (foam/vinyl with steps on one side and a ramp down the other), and it was the best thing for him! The day they brought it over, he climbed the two steps on the second try--he had never attempted to climb anything before! He brought me to tears, I was so proud! Last week, his PT showed him how to climb the real stairs, and the next day I found him on the second step, trying to get to the third. I am so proud of his determination. He has to work SO hard to get up those steps, but even if he's fussing with frustration, he keeps going. His teacher witnessed that last week, and she was very impressed with his perseverance. It takes him longer than the average kiddo to reach milestones, but it makes each new accomplishment so much sweeter. I'm so proud of that little bugger.
When Bryce had his first birthday back in July, I remember being really sad because I didn't even know what to put on his gift wish-list. He just didn't really show any particular interests, and since he couldn't even sit up, he was very limited. I remember just crying and feeling guilty because by Connor's first birthday, I knew exactly what he would like. Bryce has changed so much since then, I know exactly the type of things to put on his Christmas list. He LOVES cars and trucks, and just like his brother, he will spend a great deal of time lying on the floor driving his cars around. He makes a cute driving noise, and always has two vehicles with him. When teaching him to climb, we'd always lure him up by putting toys on the higher levels....he now does that himself, so there are always cars and trucks on the steps and his climbing toy. He also loves putting toys in and on top of things--give him a bucket and some toys and he's happy! It seems like such a simple thing for a 15 month old, but seeing that intentional play and his new interests makes me so happy!
Bryce is also trying to communicate a lot more, and is doing some signing. It's still new and inconsistent, but his desire to communicate is making me much more diligent about using signs with him. Even when he does signs, he makes a sound like he's trying to say the word too (it's no where near the actual word sound, but his teacher is so happy he's even making those connections). I'm just having such a great time seeing him grow and develop his personality. He continues to be the EASIEST, HAPPIEST baby ever born. I'm pretty sure that's not an exaggeration :)
With all their individual growth and changes has also come growth and change in the boys' relationship with each other. Connor cheers and claps for Bryce's accomplishments. Bryce still admires Connor, but has also learned to push him away if Connor's in his space. It's so great to see Bryce able to join in when Connor and Mike wrestle. Life is just really good right now in our household.
I hope everyone has a safe and family-filled Thanksgiving. We will be busy with three family Thanksgivings and Connor's birthday party this weekend. Take care!
Julie
Connor turned four on November 15th. Four seems so grown up, and I know next year will be even harder for me. Once he turns five, his babyhood is REALLY gone :( 90% of the time, Connor is such a pleasure to parent. While his incessant talking sometimes gets old (like when he talked constantly for the first 45 minutes we were awake this morning....seriously didn't stop for 45 minutes), he is so funny and I remind myself to enjoy the fact that he has an imagination, and that he wants to talk to me. I know, sadly, that both of those things will change as he grows up. His vocabulary continues to surprise me, and his memory is a steel trap. His favorite show right now is Peppa Pig, which is a British cartoon on Nick Jr. Since he started watching that show, he often slips into a British accent, which is hilarious. He spoke to our pediatrician with his British accent, and the doctor agreed that it's great to have a few accents in your back pocket :)
Connor has always been a kid with very specific interests. If it interests him, he immerses himself in it. If it doesn't interest him, good luck holding his attention. Lately, he has been very interested in learning to read. He has always loved letters and books, but now that he is getting older, he wants to be able to read himself. He knows many sight words, and has been more interested in sounding words out. I'm so excited by this, and have been trying to get him to do some workbooks with me. He wants to read, but has no interest in writing the letters, so doing workbooks has proven difficult. I am trying to find a way to teach him to read that will keep his interest...I may need to resort to computer programs. His preschool-age stubborn streak certainly shows up occasionally, and I am having trouble adjusting to him not taking a nap, but otherwise he is just a joy. He says the funniest things!
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| Connor's Thanksgiving Feast at School |
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| Wall-E for Halloween! |
Bryce has also been learning and changing like crazy. Until the end of August, he couldn't even sit up unassisted, and now--just a few months later--he is belly crawling (quickly!) to get around, sitting well on his own, and has even started to sit himself up (finally). His newest accomplishment is climbing. He climbs all day long. His early intervention team brought over a climbing toy (foam/vinyl with steps on one side and a ramp down the other), and it was the best thing for him! The day they brought it over, he climbed the two steps on the second try--he had never attempted to climb anything before! He brought me to tears, I was so proud! Last week, his PT showed him how to climb the real stairs, and the next day I found him on the second step, trying to get to the third. I am so proud of his determination. He has to work SO hard to get up those steps, but even if he's fussing with frustration, he keeps going. His teacher witnessed that last week, and she was very impressed with his perseverance. It takes him longer than the average kiddo to reach milestones, but it makes each new accomplishment so much sweeter. I'm so proud of that little bugger.
When Bryce had his first birthday back in July, I remember being really sad because I didn't even know what to put on his gift wish-list. He just didn't really show any particular interests, and since he couldn't even sit up, he was very limited. I remember just crying and feeling guilty because by Connor's first birthday, I knew exactly what he would like. Bryce has changed so much since then, I know exactly the type of things to put on his Christmas list. He LOVES cars and trucks, and just like his brother, he will spend a great deal of time lying on the floor driving his cars around. He makes a cute driving noise, and always has two vehicles with him. When teaching him to climb, we'd always lure him up by putting toys on the higher levels....he now does that himself, so there are always cars and trucks on the steps and his climbing toy. He also loves putting toys in and on top of things--give him a bucket and some toys and he's happy! It seems like such a simple thing for a 15 month old, but seeing that intentional play and his new interests makes me so happy!
Bryce is also trying to communicate a lot more, and is doing some signing. It's still new and inconsistent, but his desire to communicate is making me much more diligent about using signs with him. Even when he does signs, he makes a sound like he's trying to say the word too (it's no where near the actual word sound, but his teacher is so happy he's even making those connections). I'm just having such a great time seeing him grow and develop his personality. He continues to be the EASIEST, HAPPIEST baby ever born. I'm pretty sure that's not an exaggeration :)
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| Climbing! |
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| Teddy for Halloween--15 months! |
With all their individual growth and changes has also come growth and change in the boys' relationship with each other. Connor cheers and claps for Bryce's accomplishments. Bryce still admires Connor, but has also learned to push him away if Connor's in his space. It's so great to see Bryce able to join in when Connor and Mike wrestle. Life is just really good right now in our household.
I hope everyone has a safe and family-filled Thanksgiving. We will be busy with three family Thanksgivings and Connor's birthday party this weekend. Take care!
Julie
Saturday, November 2, 2013
30 Days of Thankfulness
Hi Friends--
I've been absent for a while....not much to report. Mike was out of the country for three weeks in October, and I tend to just go into survival mode when he's gone.
It is November now, and I was reminded yesterday of the Thirty Days of Thankfulness "campaign" that has been around on facebook for the past few Novembers. I did it a couple years ago, and found that it is a great exercise....one I should probably practice 365 days a year, not just thirty. If you haven't heard of it, basically you just look back at the end of each day and find something you're thankful for. In my case, I put it on facebook, but simply telling your family, spouse, or writing it in a journal would work too.
Since Bryce was born, I have found myself being thankful so much more often than I did before. I wallowed in self-pity and "why us?" for a while, but since then I've been reminded over and over again that there is always someone worse off than I am. When Bryce was still in the hospital after his birth, and I was still in grief-mode, a nurse came to talk to me about her son, who is severely disabled and needs care 24 hours a day. I think I said something very insensitive at the time, but it was really a turning point for me. If we had to have a "disabled" child, we hit the jackpot with Down syndrome. I put disabled in quotes, because I don't consider my son disabled. He is able to do everything everyone else is....just at his own pace. Being a part of a new community of people has made me so much more aware of parents whose children are sick or truly disabled, and I am constantly looking at BOTH of my healthy kids and sending little "thank yous" up to God. It could change at any moment.
Life is so fragile. It is so hard to remember this on the hard days. You'll be surprised how much stopping to think about what you're thankful for changes your way of thinking. If you've never participated in Thirty Day of Thankfulness, I challenge you to do it this year. You'll be amazed by the silver linings you find--especially on days when nothing seems to be going right.
Today I am thankful for all of you, my friends! Take care.
I've been absent for a while....not much to report. Mike was out of the country for three weeks in October, and I tend to just go into survival mode when he's gone.
It is November now, and I was reminded yesterday of the Thirty Days of Thankfulness "campaign" that has been around on facebook for the past few Novembers. I did it a couple years ago, and found that it is a great exercise....one I should probably practice 365 days a year, not just thirty. If you haven't heard of it, basically you just look back at the end of each day and find something you're thankful for. In my case, I put it on facebook, but simply telling your family, spouse, or writing it in a journal would work too.
Since Bryce was born, I have found myself being thankful so much more often than I did before. I wallowed in self-pity and "why us?" for a while, but since then I've been reminded over and over again that there is always someone worse off than I am. When Bryce was still in the hospital after his birth, and I was still in grief-mode, a nurse came to talk to me about her son, who is severely disabled and needs care 24 hours a day. I think I said something very insensitive at the time, but it was really a turning point for me. If we had to have a "disabled" child, we hit the jackpot with Down syndrome. I put disabled in quotes, because I don't consider my son disabled. He is able to do everything everyone else is....just at his own pace. Being a part of a new community of people has made me so much more aware of parents whose children are sick or truly disabled, and I am constantly looking at BOTH of my healthy kids and sending little "thank yous" up to God. It could change at any moment.
Life is so fragile. It is so hard to remember this on the hard days. You'll be surprised how much stopping to think about what you're thankful for changes your way of thinking. If you've never participated in Thirty Day of Thankfulness, I challenge you to do it this year. You'll be amazed by the silver linings you find--especially on days when nothing seems to be going right.
Today I am thankful for all of you, my friends! Take care.
Sunday, September 29, 2013
Six Years
Yesterday, Mike and I celebrated our sixth wedding anniversary. As I reflected on what a good man he is, I started thinking about how thankful I am to have met him. That led me to thinking about fate, God's plan, luck, etc.
On March 31st, 2005, my friend Jess and I went out to Axel's Bonfire in Savage like we often did on weekend nights. They had great dueling pianos, and it was a fun bar not too far from home. That night, Mike also happened to be there. He wasn't much into going to bars, and certainly didn't go out in Savage very often. His friend was moving, and they were having a good-bye party. It took a lot of stolen glances across the room and quite few beers before we got the nerve to talk to each other. He told me he was going to take me out....I told him he could, but that I probably wouldn't talk and it would be awkward (I wasn't trying to talk him out of it, I just found dating very awkward and wanted to give him fair warning).
A week or two went by, and he hadn't called. I had given my number to plenty of guys at bars and rarely expected them to actually call. But I had a feeling about this one. I was pretty surprised and let down when he didn't call. BUT, apparently he didn't stop thinking about me either; he eventually worked up the nerve and we went out. I was shy and awkward on our first date, but he stuck it out. Two and a half years later, we were married, and the rest is history. (I'm sure there are plenty of times now that he misses that QUIET girl he took on a first date!)
Every once in a while, as I did yesterday, I think, what if I hadn't gone out that night? What if Mike and his friends had decided to go to the Bonfire in Eagan instead, like they usually did? Would God have put him in my life in a different way? Would I still be single and waiting for the one? Maybe I would have married someone else. Maybe he would have. I might even have kids...but they wouldn't be OUR kids. I like to think God made Mike for me and that our kids are meant to be, but I just don't know. All I know is that I'm thankful it worked out the way it did. I am so blessed to have a man who puts me first, is a wonderful father, provides for his family, and never makes me question his feelings for me.
We had such a beautiful day for our wedding. Thank you, Mikey, for sticking with me. It's been a roller coaster of a six years, and I look forward to the rest of the ride. Love you bunches!
On March 31st, 2005, my friend Jess and I went out to Axel's Bonfire in Savage like we often did on weekend nights. They had great dueling pianos, and it was a fun bar not too far from home. That night, Mike also happened to be there. He wasn't much into going to bars, and certainly didn't go out in Savage very often. His friend was moving, and they were having a good-bye party. It took a lot of stolen glances across the room and quite few beers before we got the nerve to talk to each other. He told me he was going to take me out....I told him he could, but that I probably wouldn't talk and it would be awkward (I wasn't trying to talk him out of it, I just found dating very awkward and wanted to give him fair warning).
A week or two went by, and he hadn't called. I had given my number to plenty of guys at bars and rarely expected them to actually call. But I had a feeling about this one. I was pretty surprised and let down when he didn't call. BUT, apparently he didn't stop thinking about me either; he eventually worked up the nerve and we went out. I was shy and awkward on our first date, but he stuck it out. Two and a half years later, we were married, and the rest is history. (I'm sure there are plenty of times now that he misses that QUIET girl he took on a first date!)
Every once in a while, as I did yesterday, I think, what if I hadn't gone out that night? What if Mike and his friends had decided to go to the Bonfire in Eagan instead, like they usually did? Would God have put him in my life in a different way? Would I still be single and waiting for the one? Maybe I would have married someone else. Maybe he would have. I might even have kids...but they wouldn't be OUR kids. I like to think God made Mike for me and that our kids are meant to be, but I just don't know. All I know is that I'm thankful it worked out the way it did. I am so blessed to have a man who puts me first, is a wonderful father, provides for his family, and never makes me question his feelings for me.
We had such a beautiful day for our wedding. Thank you, Mikey, for sticking with me. It's been a roller coaster of a six years, and I look forward to the rest of the ride. Love you bunches!
Thursday, September 5, 2013
Preschool!
Today was Connor's first day of preschool. He was so excited! I mean REALLY excited....not the least bit nervous.
On Tuesday, there was an open house/practice run in which we got to participate. Connor got to find his locker and cubby, and the teachers prepared a scavenger hunt for the kids to find all the important things in the classroom. Connor looked a little bit like a deer in headlights, but there were lots of new people and surroundings, so I wasn't surprised.
At one point the teacher asked all the kids to sit on a blanket so she could say a few things.She ended up talking to the parents for quite some time, and by the end of it, Connor was one of only two kids left on the blanket. At one point, a little girl was whispering things to him. I was too far away to know what the conversation was about. When I asked him later, he said, "She kept talking and I was saying shhhhhhh...." I think we may have a little goody two-shoes on our hands :)
Because I got to participate in the open house on Tuesday, I decided it would be best to make today as normal as possible, so Mike dropped Connor off at preschool while I stayed home with Bryce (this is how it will normally happen). It was harder on Daddy than it was on Connor :)
Bryce's EI teacher was here most of the time Connor was gone, so I was distracted from worrying about how he was doing. Before I knew it, it was time to pick him up. When I got there he was still in good spirits. I want to know what he did EVERY second he was there, but of course I've only gotten vague details. Whatever happened, there were no tears and he's home in one piece. Such an exciting time! I think we're all going to like it.
On Tuesday, there was an open house/practice run in which we got to participate. Connor got to find his locker and cubby, and the teachers prepared a scavenger hunt for the kids to find all the important things in the classroom. Connor looked a little bit like a deer in headlights, but there were lots of new people and surroundings, so I wasn't surprised.
At one point the teacher asked all the kids to sit on a blanket so she could say a few things.She ended up talking to the parents for quite some time, and by the end of it, Connor was one of only two kids left on the blanket. At one point, a little girl was whispering things to him. I was too far away to know what the conversation was about. When I asked him later, he said, "She kept talking and I was saying shhhhhhh...." I think we may have a little goody two-shoes on our hands :)
Because I got to participate in the open house on Tuesday, I decided it would be best to make today as normal as possible, so Mike dropped Connor off at preschool while I stayed home with Bryce (this is how it will normally happen). It was harder on Daddy than it was on Connor :)
Bryce's EI teacher was here most of the time Connor was gone, so I was distracted from worrying about how he was doing. Before I knew it, it was time to pick him up. When I got there he was still in good spirits. I want to know what he did EVERY second he was there, but of course I've only gotten vague details. Whatever happened, there were no tears and he's home in one piece. Such an exciting time! I think we're all going to like it.
Friday, August 23, 2013
Beginning of the End....
In a few weeks, my first baby will start preschool. In some ways, it has been a long time coming, but in other ways I can't believe it. I have been so excited for him to start preschool....being a November baby, he's been three for a while now, but wasn't old enough to start last year. He is so ready, and I think it's going to be very good for him. I think it will also be good for our relationship...like any three year old, he is very strong-willed, and being home this last year, we have butted heads on a regular basis. Having a break from one another a couple mornings a week will probably be good for us.
But, as the actual start of school draws near, the excitement is morphing into something else. Something that makes me really close to tears every time I think about it. It's the end of his babyhood. It's the end of that time together that everyone says goes so fast. The end of the really, really difficult time that everyone told me to appreciate while it lasted....and many days I haven't appreciated it. And now I'm sorry for that. Yes, I realize he'll only be gone for three hours, two days a week. But it's the beginning of the end.
School means new friends, new independence, new skills....but it also means new insecurities, hurt feelings, injustices, and hard lessons. Things that will break my heart because they break his. I know that this is how kids learn, and that we all went through it, but I dread it. I dread feeling that hurt for my kids. I hope I can make through all that without punching some kid for messing with mine (kidding....kind of). I hope I can teach Connor how to make it through all that without making my anxieties rub off on him. I hope I can love him so much he'll have confidence and security no matter what happens at school.
Dear Connor,
I am so proud of you. You surprised us by coming six weeks early, and haven't stop surprising us ever since. You surprise us with your humor, compassion, and unbelievable vocabulary. The way you comprehend and process things is far beyond that of a three-year old. You hold me accountable for my actions the way I hold you accountable for yours. You have been my greatest teacher and best buddy. I am sorry for the times I didn't appreciate every second I've gotten to spend at home with you. I know you will do so well at preschool. Your teachers and classmates will be so lucky to have a character like you in their class. I can't wait to watch you learn and grow even more, but I also want you to stay my baby forever. Don't leave your mama, okay? I love you whole world, big boy.
Love, Mama
But, as the actual start of school draws near, the excitement is morphing into something else. Something that makes me really close to tears every time I think about it. It's the end of his babyhood. It's the end of that time together that everyone says goes so fast. The end of the really, really difficult time that everyone told me to appreciate while it lasted....and many days I haven't appreciated it. And now I'm sorry for that. Yes, I realize he'll only be gone for three hours, two days a week. But it's the beginning of the end.
School means new friends, new independence, new skills....but it also means new insecurities, hurt feelings, injustices, and hard lessons. Things that will break my heart because they break his. I know that this is how kids learn, and that we all went through it, but I dread it. I dread feeling that hurt for my kids. I hope I can make through all that without punching some kid for messing with mine (kidding....kind of). I hope I can teach Connor how to make it through all that without making my anxieties rub off on him. I hope I can love him so much he'll have confidence and security no matter what happens at school.
Dear Connor,
I am so proud of you. You surprised us by coming six weeks early, and haven't stop surprising us ever since. You surprise us with your humor, compassion, and unbelievable vocabulary. The way you comprehend and process things is far beyond that of a three-year old. You hold me accountable for my actions the way I hold you accountable for yours. You have been my greatest teacher and best buddy. I am sorry for the times I didn't appreciate every second I've gotten to spend at home with you. I know you will do so well at preschool. Your teachers and classmates will be so lucky to have a character like you in their class. I can't wait to watch you learn and grow even more, but I also want you to stay my baby forever. Don't leave your mama, okay? I love you whole world, big boy.
Love, Mama
Friday, August 16, 2013
Bryce is ONE!
Hi Friends,
I'm so late with this post, but between Mike and I both traveling and kids who don't want to nap, I haven't found the time to blog!
On July 31st, our little sweetheart turned one. Even though in some ways Bryce was born a lifetime ago, I remember all the details of his birth and time in the hospital like it was yesterday, so it's hard to believe it's been a whole year.
Bryce got to spend his real birthday with his Grammy (my mom), because I had to work. She made us a joint birthday dinner and cake that evening. Bryce LOVES to eat, so he was happy! The following Saturday, we had a little family birthday party for him. It was a beautiful day, so we were able to be outside. It was a great day! Connor is always an excellent host and very excited for everyone to be at our house.
I'm so late with this post, but between Mike and I both traveling and kids who don't want to nap, I haven't found the time to blog!
On July 31st, our little sweetheart turned one. Even though in some ways Bryce was born a lifetime ago, I remember all the details of his birth and time in the hospital like it was yesterday, so it's hard to believe it's been a whole year.
Bryce got to spend his real birthday with his Grammy (my mom), because I had to work. She made us a joint birthday dinner and cake that evening. Bryce LOVES to eat, so he was happy! The following Saturday, we had a little family birthday party for him. It was a beautiful day, so we were able to be outside. It was a great day! Connor is always an excellent host and very excited for everyone to be at our house.
Dear Bryce,
At twelve months, you are such a joy. Even though there has been a slow-down in your large motor skills lately, you have been focusing instead on fine motor skills and developing your stubborn, sassy, and sweet personality. You love to make faces (especially for the camera), and have quite a loud scream when you think you're not getting enough attention. You say "hi" by waving (seeing your cute chubby hand on the end of that short little arm melts my heart every time), smile at everyone, and finally raise your own arms when I ask "how big is Brycey?". You LOVE harassing your brother by grabbing at his toys, and harassing mama by grabbing any electrical cord, dog toy, or anything else you're not supposed to have. I really fear that I will have my hands full with you when you start walking! It took you a while to get the hang of feeding yourself, but one day you just got it, and never turned back. You LOVE eating, and aren't very happy when I still try to give you baby food. Bryce, I am so proud of you and all of your accomplishments. Right when I start to feel down about things, you do something that brings me to tears and shows me it will be alright. You do things at your own pace, and you do it all with a smile. Thank you, sweet Bryce, for choosing me to be your mom!
xoxo
Friday, July 26, 2013
Creed
In five days, our sweet Bryce will be one year old. A whole year. I can't believe it. While the days surrounding his birth and diagnosis are a blur, I also remember it like it was yesterday. It's hard to fathom that it was a whole year ago. I am a different person than I was that day. That little boy has taught me so much and changed my perspective on a lot of things.
After he was born, I felt the need to tell everyone I ran into that he has Down syndrome. I didn't want people wondering and feeling awkward. The first question most people would ask is, "and you didn't know ahead of time?". I would usually answer that it was "the worst day of my life". Now I wonder how I ever could have said such a thing. How could the day that this little blessing was born be the worst day of my life?? I think what I meant to say was that it was the hardest day of my life. That is certainly fair to say. It was definitely the hardest day of my life. I was devastated. If only I knew that day what I know now.
Now I know that it doesn't matter. That my life as I knew was over, but not in a bad way. That this little boy was sent by God to teach me to love. To change my ways. To really SEE people. To count my blessings. Whenever I start to go down the "why us" path (which still happens occasionally), God shows me that I have it so good. There is always someone worse off than me. Bryce is healthy. All of his limbs work. He wakes up every day with a smile on his face. He cries when he hurts, and laughs when he's happy, and yells when he wants attention.He gets into things he shouldn't and makes silly faces for the camera. He is a normal baby who happens to have loose joints and goes at a slower pace. He is pure joy.
I recently came across this poem, but there was no credit given to the author. I googled a line of it and discovered that they call it the Down Syndrome Creed. The author is unknown. It says everything I wish I could say. I wish everyone could experience loving one of these children.
After he was born, I felt the need to tell everyone I ran into that he has Down syndrome. I didn't want people wondering and feeling awkward. The first question most people would ask is, "and you didn't know ahead of time?". I would usually answer that it was "the worst day of my life". Now I wonder how I ever could have said such a thing. How could the day that this little blessing was born be the worst day of my life?? I think what I meant to say was that it was the hardest day of my life. That is certainly fair to say. It was definitely the hardest day of my life. I was devastated. If only I knew that day what I know now.
Now I know that it doesn't matter. That my life as I knew was over, but not in a bad way. That this little boy was sent by God to teach me to love. To change my ways. To really SEE people. To count my blessings. Whenever I start to go down the "why us" path (which still happens occasionally), God shows me that I have it so good. There is always someone worse off than me. Bryce is healthy. All of his limbs work. He wakes up every day with a smile on his face. He cries when he hurts, and laughs when he's happy, and yells when he wants attention.He gets into things he shouldn't and makes silly faces for the camera. He is a normal baby who happens to have loose joints and goes at a slower pace. He is pure joy.
I recently came across this poem, but there was no credit given to the author. I googled a line of it and discovered that they call it the Down Syndrome Creed. The author is unknown. It says everything I wish I could say. I wish everyone could experience loving one of these children.
My face may be different
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace.
But my feelings the same
I laugh and I cry
And I take pride in my gains
I was sent here among you
To teach you to love
As God in the heavens
Looks down from above
To Him I'm no different
His love knows no bounds
It's those here among you
In cities and towns
That judge me by standards
That man has imparted
But this family I've chosen
Will help me get started
For I'm one of the children
So special and few
That came here to learn
The same lessons as you
That love is acceptance
It must come from the heart
We all have the same purpose
Though not the same start
The Lord gave me life
To live and embrace
And I'll do it as you do
But at my own pace.
Happy Birthday, sweet Brycey. Thank you for choosing us!
Monday, July 8, 2013
Achievements
As with most people, I have a mental "bucket list" for the summer, but mine mostly consists of things I want my boys to achieve. For Bryce, I really really REALLY want(ed) him to be sitting on his own by his first birthday, and I want him to be scooting/crawling proficiently by the end of the summer. For Connor, potty training and bike pedaling are the goals.
The 4th of July is the unofficial mid-summer mark (remember, I'm still on teacher-time), and I got a little down/frustrated seeing that these goals are not being achieved. Short of a miracle, there is no way Bryce is going to be sitting on his own by the time his b-day rolls around in 3 weeks. He is so proficient at rolling to get where he wants, that I fear we won't achieve the crawling goal either, but there's still time for that one :). Connor is refusing potty training (he has amazing control though...he just held his pee for 5 hours this morning) and will hardly take his trike out of the garage, let alone pedal it. Upon thinking about these things, I started on a path of self-abuse...am I not working with them enough? What am I doing wrong? Are my efforts actually setting them back, instead of moving them forward? It seems as though Bryce hasn't changed much since May--why is his development stalling?
Then, the other day, I had an epiphany. Bryce's development hasn't stalled. He has been very busy, in fact. He has discovered how to be silly. He can put his pacifier in his own mouth. He has sprouted three teeth. He has become much more vocal (a really good sign for kids with DS). He can pace himself with his sippy cup. Two weeks ago, he was struggling with finger foods--now he gets about 70% of the food in his mouth on the first try. Whoa. He's developing like crazy--just not in the ways I planned.
Connor needs to be potty trained in order to start preschool. He's just not doing it. It's a huge cause of stress for me, but I don't want to discuss it. It's too much. I want him to be able to get a bike next summer, but he doesn't want to learn to pedal. He's driving me nuts with these things. Why? Why not just revel in the amazing things that child says and does? He's hilarious. He's creative. He's so stinking smart. He may not be ready for preschool in the potty area....but he subtracts his Skittles as he eats them. He knows about canyons and geysers and measuring things by "units". He bakes imaginary cakes-measuring out all the correct ingredients. The other day, he asked me to count by 9s to 99, 8s to 88, 7s to 77, all the way down to 1s to oney-one :) He's awesome. Yes, he needs to get potty trained (prayers needed), but why should that be my only measure of his success this summer?
We often hear about parents living vicariously through their kids. I won't necessarily need to do this, as my parents always found a way for me to experience all I wanted to experience. But, I am certainly guilty of trying to get my kids to fit my mold....and they are doing a great job of showing me that's not necessarily how it's going to be. What wonderful lessons these little ones can teach us, if we'd only get out of our own way and listen.
The 4th of July is the unofficial mid-summer mark (remember, I'm still on teacher-time), and I got a little down/frustrated seeing that these goals are not being achieved. Short of a miracle, there is no way Bryce is going to be sitting on his own by the time his b-day rolls around in 3 weeks. He is so proficient at rolling to get where he wants, that I fear we won't achieve the crawling goal either, but there's still time for that one :). Connor is refusing potty training (he has amazing control though...he just held his pee for 5 hours this morning) and will hardly take his trike out of the garage, let alone pedal it. Upon thinking about these things, I started on a path of self-abuse...am I not working with them enough? What am I doing wrong? Are my efforts actually setting them back, instead of moving them forward? It seems as though Bryce hasn't changed much since May--why is his development stalling?
Then, the other day, I had an epiphany. Bryce's development hasn't stalled. He has been very busy, in fact. He has discovered how to be silly. He can put his pacifier in his own mouth. He has sprouted three teeth. He has become much more vocal (a really good sign for kids with DS). He can pace himself with his sippy cup. Two weeks ago, he was struggling with finger foods--now he gets about 70% of the food in his mouth on the first try. Whoa. He's developing like crazy--just not in the ways I planned.
Connor needs to be potty trained in order to start preschool. He's just not doing it. It's a huge cause of stress for me, but I don't want to discuss it. It's too much. I want him to be able to get a bike next summer, but he doesn't want to learn to pedal. He's driving me nuts with these things. Why? Why not just revel in the amazing things that child says and does? He's hilarious. He's creative. He's so stinking smart. He may not be ready for preschool in the potty area....but he subtracts his Skittles as he eats them. He knows about canyons and geysers and measuring things by "units". He bakes imaginary cakes-measuring out all the correct ingredients. The other day, he asked me to count by 9s to 99, 8s to 88, 7s to 77, all the way down to 1s to oney-one :) He's awesome. Yes, he needs to get potty trained (prayers needed), but why should that be my only measure of his success this summer?
We often hear about parents living vicariously through their kids. I won't necessarily need to do this, as my parents always found a way for me to experience all I wanted to experience. But, I am certainly guilty of trying to get my kids to fit my mold....and they are doing a great job of showing me that's not necessarily how it's going to be. What wonderful lessons these little ones can teach us, if we'd only get out of our own way and listen.
Sunday, July 7, 2013
Family Time
Hi Friends,
It's been a while! Happy Summer!
Between Mike and I working opposite shifts and his work travels, our time as a whole family is very limited. It's hard for me to be home alone with the boys all day and then go to work, and it's hard for Mike to have to jump right in to dinner and bedtime by himself after a long day at work. I keep telling myself that it won't be forever, and our boys are so blessed to always be with one of their parents or grandparents. Despite all that, the truth is, we are all happiest when the four of us can all be together.
Last weekend, I had the opportunity to travel to Madison, WI to work at The Color Run, which my sister-in-law directed. It was really fun, and a nice little getaway. Upon my return, I worked every evening from Sunday-Wednesday. Knowing that Mike would be leaving again for a week of work travel, we decided we needed a little family time so we took a quick trip up to Duluth on Thursday and Friday. I love Duluth in the summer time, and the time together was just what the doctor ordered.
We picnicked by Lake Superior, walked out to the lighthouse, put our toes in the lake, checked out the train museum, swam in the hotel pool (oh my, does Bryce LOVE water!), went out for pizza, slept well in the hotel, went back to the lake, went to the Great Lake Aquarium, and saw a big ship come through before grabbing lunch and heading home.
Usually when Mike and I get the opportunity to travel, we don't take the kids along. Other than Wisconsin and Nebraska to visit my siblings, Connor has never really gotten to go anywhere. It was so fun watching him experience new things, and he said multiple times how nice it was to be together as a family. What a blessing this little getaway was!
I hope everyone else had a wonderful 4th of July and is enjoying the beautiful summer weather! Take care.
It's been a while! Happy Summer!
Between Mike and I working opposite shifts and his work travels, our time as a whole family is very limited. It's hard for me to be home alone with the boys all day and then go to work, and it's hard for Mike to have to jump right in to dinner and bedtime by himself after a long day at work. I keep telling myself that it won't be forever, and our boys are so blessed to always be with one of their parents or grandparents. Despite all that, the truth is, we are all happiest when the four of us can all be together.
Last weekend, I had the opportunity to travel to Madison, WI to work at The Color Run, which my sister-in-law directed. It was really fun, and a nice little getaway. Upon my return, I worked every evening from Sunday-Wednesday. Knowing that Mike would be leaving again for a week of work travel, we decided we needed a little family time so we took a quick trip up to Duluth on Thursday and Friday. I love Duluth in the summer time, and the time together was just what the doctor ordered.
We picnicked by Lake Superior, walked out to the lighthouse, put our toes in the lake, checked out the train museum, swam in the hotel pool (oh my, does Bryce LOVE water!), went out for pizza, slept well in the hotel, went back to the lake, went to the Great Lake Aquarium, and saw a big ship come through before grabbing lunch and heading home.
Usually when Mike and I get the opportunity to travel, we don't take the kids along. Other than Wisconsin and Nebraska to visit my siblings, Connor has never really gotten to go anywhere. It was so fun watching him experience new things, and he said multiple times how nice it was to be together as a family. What a blessing this little getaway was!
I hope everyone else had a wonderful 4th of July and is enjoying the beautiful summer weather! Take care.
Thursday, May 30, 2013
Staying Home
Hi Friends,
As the school year draws to an end, I find myself feeling a little lost again. As I mentioned when I first decided to take a hiatus from teaching, teachers live by a different calendar than other working adults. The first month of the year is September, not January! Even though it has now been a whole year since I've been in the classroom, I find myself still going by that calendar. I am feeling the excitement and anticipation of the end of the school year as if I was still there. The last days of school were always long, but also some of my favorites. I was the type of teacher to party the last couple days--not cram in a bunch of tests and last minute assignments. After all, I wanted to walk out at 2:10 on the last day of school and not look back again until September as much as the kids did!
Even though I was happy at my job, I couldn't help myself but to look at job postings every spring. This year is no different. I looked the other day, and let me tell you....there are a few jobs I am tempted to apply for. I even ran some scenarios through my head, but it always comes back to money. Unless these jobs are miraculously going to pay FAR better than my last job, we're back to the reason I left in the first place. I'm not willing to sign 2/3 of my paycheck over to a daycare provider. We also have the added complications of preschool for Connor next year (transportation), Bryce's PT and EI schedule, and the fact that I can't imagine sending Bryce to daycare, even though I'm sure he'd do just fine.
This year of stay-at-home motherhood was probably the hardest year of my life. Dealing with two little boys is far more exhausting for me than dealing with 25 middle schoolers, believe it or not. I am still not convinced I was made to be a full-time mommy, but I also realize how blessed I am to have this time with my kids (even though some days I have to remind myself CONSTANTLY). There are days that I love being with them during the day. I am so thankful I was able to do music and ECFE classes with Connor. I love doing things like going to the zoo, or story time at the library. I love making Mickey Mouse pancakes on random Tuesday mornings. Those are the times I realize how lucky I am, and how much I love this time with my little ones. But it was a LONG winter, and there were days that we are lucky everyone survived. There were days it was miraculous I had any hair left in my head. There were days I wished with all my might that I was working.
Just as deciding to leave my job was a huge internal struggle last year, deciding what to do next is my current struggle. We really could use some more income. Should I try to get a better paying job in a different field? Should I try to get a job at a public school, which would pay slightly better? Should I stay home until Connor is in kindergarten as I originally planned? I don't know.
When Connor randomly tells me I'm beautiful, or that he loves me "the whole world", or Bryce smiles at me or gives me those big open-mouth kisses, the answer is pretty clear. When we're on our 6th poopy diaper or 4th temper tantrum of the day, the other answer is pretty clear. I guess all I can do is pray the answer will come to me. Maybe someone will magically call and offer me a REALLY REALLY good paying teaching job that I won't be able to resist :) While I wait for that to happen, I guess I will count my blessings (and poopy diapers) and enjoy the "summer vacation" that will always be "summer vacation", whether I'm still in the classroom or not.
As the school year draws to an end, I find myself feeling a little lost again. As I mentioned when I first decided to take a hiatus from teaching, teachers live by a different calendar than other working adults. The first month of the year is September, not January! Even though it has now been a whole year since I've been in the classroom, I find myself still going by that calendar. I am feeling the excitement and anticipation of the end of the school year as if I was still there. The last days of school were always long, but also some of my favorites. I was the type of teacher to party the last couple days--not cram in a bunch of tests and last minute assignments. After all, I wanted to walk out at 2:10 on the last day of school and not look back again until September as much as the kids did!
Even though I was happy at my job, I couldn't help myself but to look at job postings every spring. This year is no different. I looked the other day, and let me tell you....there are a few jobs I am tempted to apply for. I even ran some scenarios through my head, but it always comes back to money. Unless these jobs are miraculously going to pay FAR better than my last job, we're back to the reason I left in the first place. I'm not willing to sign 2/3 of my paycheck over to a daycare provider. We also have the added complications of preschool for Connor next year (transportation), Bryce's PT and EI schedule, and the fact that I can't imagine sending Bryce to daycare, even though I'm sure he'd do just fine.
This year of stay-at-home motherhood was probably the hardest year of my life. Dealing with two little boys is far more exhausting for me than dealing with 25 middle schoolers, believe it or not. I am still not convinced I was made to be a full-time mommy, but I also realize how blessed I am to have this time with my kids (even though some days I have to remind myself CONSTANTLY). There are days that I love being with them during the day. I am so thankful I was able to do music and ECFE classes with Connor. I love doing things like going to the zoo, or story time at the library. I love making Mickey Mouse pancakes on random Tuesday mornings. Those are the times I realize how lucky I am, and how much I love this time with my little ones. But it was a LONG winter, and there were days that we are lucky everyone survived. There were days it was miraculous I had any hair left in my head. There were days I wished with all my might that I was working.
Just as deciding to leave my job was a huge internal struggle last year, deciding what to do next is my current struggle. We really could use some more income. Should I try to get a better paying job in a different field? Should I try to get a job at a public school, which would pay slightly better? Should I stay home until Connor is in kindergarten as I originally planned? I don't know.
When Connor randomly tells me I'm beautiful, or that he loves me "the whole world", or Bryce smiles at me or gives me those big open-mouth kisses, the answer is pretty clear. When we're on our 6th poopy diaper or 4th temper tantrum of the day, the other answer is pretty clear. I guess all I can do is pray the answer will come to me. Maybe someone will magically call and offer me a REALLY REALLY good paying teaching job that I won't be able to resist :) While I wait for that to happen, I guess I will count my blessings (and poopy diapers) and enjoy the "summer vacation" that will always be "summer vacation", whether I'm still in the classroom or not.
Friday, May 10, 2013
9 Months!
I cannot believe our little man is nine months old! I feel as though his first year is going soooo much faster than Connor's did. I think it's a combination of a lot of factors: his first month spent in the hospital, living in a cloud of shock and fear for a while, being busier with two kids, and the fact that he seems younger because he's not developmentally doing what most nine month olds are doing. The fact that we will be celebrating his first birthday in less than three months blows my mind. I realize that in the life and development of a baby, three months is a long time, but I just can't imagine him sitting in his highchair eating cake. I sure hope he can, though!
Overall, Bryce is still a pretty happy-go-lucky little guy. He is starting to get much more opinionated, though. I have mixed feelings about this...I'm happy he's sharp enough to have an opinion, but missing the baby I could just lay on the floor while I get things done! He is wanting so much more attention and entertainment these days. He is a very social baby! He smiles all the time, has such an expressive face, and has this great chuckle that is coming more much easily these days. Bryce has also started completely melting his mama's heart by giving kisses! He has been giving kisses for a while, but I always just thought it was a reflex, because he would just turn into my face when I gave him kisses....but now, he'll actually grab my face and pull me in for a kiss on his own. Seriously melts my heart. Such a sweetie pie!
Even though I was (falsely) hoping he would defy all odds and be the one person with Down syndrome who didn't have any issues or delays, I have been having to face the music a little bit more lately. I have been encountering a lot of frustrations and worries these days. Up until a month or two ago, I could say Bryce wasn't that far behind--especially when you looked at his adjusted age. But now, his adjusted as is almost 8 months and he physically is more like a 5-6 month old. At the end of March, I was so excited because it seemed as though he was figuring things out. He has started rolling all over the place and has made the connection that he can get where/what he wants by rolling and pivoting. He gets his knees moving like he's going to crawl, but is still not pushing himself up with his arms. He just does not want to support himself with his upper body. Six weeks ago, I was sure he'd be belly crawling by now....but then we hit a few rough patches that slowed him down. In mid-April, Bryce got the chicken pox and wasn't feeling well for a couple weeks (although he handled it like a champ!), and now he's been working on sprouting his first tooth. His physical therapist assured me that there will be times like this--if his body is busy with things like that, he's not going to have the energy to make progress developmentally.
I don't want to use the word "frustrating", because he can't help it, but I'm just getting a little anxious. I knew this day would come, but it's still hard to face. It is really hard for me to watch him wanting to do more, but can't. It's like he's ready for more stimulation, but without being able to sit up, he is pretty limited. His inability to sit has been causing some difficulties for me--particularly when it comes to baths and eating. He is way too big for the baby bath sling, but he can't sit up well enough to bathe him any other way (at least not with only two hands!). He also is starting to be more interested in finger foods, but can't/won't sit up straight enough in his highchair to practice feeding himself.
I have been consulting a book called "Gross Motor Skills in Children with Down Syndrome". It is a great resource because it has activities (with pictures) to encourage all the different developmental milestones. In the book, it explains that there are two different kinds of kids--observers and motor-driven. Bryce is definitely motor driven. He has never sat still in his life (I swear I could feel him moving by the time I was about 12 weeks pregnant). He even moves in his sleep! While this is good in some ways, it is not good when it comes to sitting. He has no interest in it, and the book explains that kids who are motor-driven feel restricted in that position. He can't move like he wants to if he is confined to his butt :) It would just make my life so much easier if he would sit up!!
Even though I've been feeling emotional about him lately, I am coming around to accepting that he will do things in his own time. I've gotten better about comparing him to other kids--although it still stings to see pictures of younger kids sitting up--but I am just ready for him to be able to do more. I am thankful I get to have a baby for longer, though. He is such a sweetheart and I am so proud of him. His smile is still magical and the way that he watches and notices everything around him still gives me hope that he'll be pretty high functioning. I just think he has some of his father's stubbornness in him and he's not going to do anything until he's good and ready!
Here's hoping time will slow down now that the weather is getting nicer. I'm not ready for this little love's first year to be over!
Overall, Bryce is still a pretty happy-go-lucky little guy. He is starting to get much more opinionated, though. I have mixed feelings about this...I'm happy he's sharp enough to have an opinion, but missing the baby I could just lay on the floor while I get things done! He is wanting so much more attention and entertainment these days. He is a very social baby! He smiles all the time, has such an expressive face, and has this great chuckle that is coming more much easily these days. Bryce has also started completely melting his mama's heart by giving kisses! He has been giving kisses for a while, but I always just thought it was a reflex, because he would just turn into my face when I gave him kisses....but now, he'll actually grab my face and pull me in for a kiss on his own. Seriously melts my heart. Such a sweetie pie!
Even though I was (falsely) hoping he would defy all odds and be the one person with Down syndrome who didn't have any issues or delays, I have been having to face the music a little bit more lately. I have been encountering a lot of frustrations and worries these days. Up until a month or two ago, I could say Bryce wasn't that far behind--especially when you looked at his adjusted age. But now, his adjusted as is almost 8 months and he physically is more like a 5-6 month old. At the end of March, I was so excited because it seemed as though he was figuring things out. He has started rolling all over the place and has made the connection that he can get where/what he wants by rolling and pivoting. He gets his knees moving like he's going to crawl, but is still not pushing himself up with his arms. He just does not want to support himself with his upper body. Six weeks ago, I was sure he'd be belly crawling by now....but then we hit a few rough patches that slowed him down. In mid-April, Bryce got the chicken pox and wasn't feeling well for a couple weeks (although he handled it like a champ!), and now he's been working on sprouting his first tooth. His physical therapist assured me that there will be times like this--if his body is busy with things like that, he's not going to have the energy to make progress developmentally.
I don't want to use the word "frustrating", because he can't help it, but I'm just getting a little anxious. I knew this day would come, but it's still hard to face. It is really hard for me to watch him wanting to do more, but can't. It's like he's ready for more stimulation, but without being able to sit up, he is pretty limited. His inability to sit has been causing some difficulties for me--particularly when it comes to baths and eating. He is way too big for the baby bath sling, but he can't sit up well enough to bathe him any other way (at least not with only two hands!). He also is starting to be more interested in finger foods, but can't/won't sit up straight enough in his highchair to practice feeding himself.
I have been consulting a book called "Gross Motor Skills in Children with Down Syndrome". It is a great resource because it has activities (with pictures) to encourage all the different developmental milestones. In the book, it explains that there are two different kinds of kids--observers and motor-driven. Bryce is definitely motor driven. He has never sat still in his life (I swear I could feel him moving by the time I was about 12 weeks pregnant). He even moves in his sleep! While this is good in some ways, it is not good when it comes to sitting. He has no interest in it, and the book explains that kids who are motor-driven feel restricted in that position. He can't move like he wants to if he is confined to his butt :) It would just make my life so much easier if he would sit up!!
Even though I've been feeling emotional about him lately, I am coming around to accepting that he will do things in his own time. I've gotten better about comparing him to other kids--although it still stings to see pictures of younger kids sitting up--but I am just ready for him to be able to do more. I am thankful I get to have a baby for longer, though. He is such a sweetheart and I am so proud of him. His smile is still magical and the way that he watches and notices everything around him still gives me hope that he'll be pretty high functioning. I just think he has some of his father's stubbornness in him and he's not going to do anything until he's good and ready!
Here's hoping time will slow down now that the weather is getting nicer. I'm not ready for this little love's first year to be over!
 |
| smiling through the chicken pox |
 |
| nine months! |
Thursday, April 25, 2013
Running on Empty....
Recently, I've been feeling more and more like I'm running on empty. Some days I think I wasn't cut out for stay-at-home-mommyhood, but I'm sure it's just our recent circumstances that have me feeling this way. We here in Minnesota have literally had 6 months of winter this year. With a baby, I've found it very difficult to get outside for fresh air. Our walls feel like they're closing in on me. Thank goodness we've got some 70s in the five day forecast now.
Aside from the weather, I was a single parent for 17 days while my husband traveled for work. Even though I have help from my parents and in-laws, it is difficult being the one solely responsible for the kiddos. The fact that we had two snowstorms (in APRIL!!) combined with Bryce getting chickenpox, and Connor screaming one night with stomach pains didn't make things any easier. I was very proud of how well the first the first 13 days went (a weekend getaway with my mom and sister to help with the kids made a huge difference), but the last few days really burned me out. I have even more respect now for single parents and military spouses.
In the days since Mike has been home, Connor has been sick with a mystery fever, body/joint aches, no appetite and crabby attitude. I don't know how much more I can take. I'm feeling horrible for not enjoying every minute with my kids, and guilty for wanting time away from them.
I am extremely blessed in my life, and I know there are people far worse off than me. I just needed to vent. Any ideas people have on free or inexpensive ways to take a break or help me re-fuel would be more than welcomed! I have a lot of hope that the warm and sunny weather coming up will certainly help. Thanks for letting me vent :)
Aside from the weather, I was a single parent for 17 days while my husband traveled for work. Even though I have help from my parents and in-laws, it is difficult being the one solely responsible for the kiddos. The fact that we had two snowstorms (in APRIL!!) combined with Bryce getting chickenpox, and Connor screaming one night with stomach pains didn't make things any easier. I was very proud of how well the first the first 13 days went (a weekend getaway with my mom and sister to help with the kids made a huge difference), but the last few days really burned me out. I have even more respect now for single parents and military spouses.
In the days since Mike has been home, Connor has been sick with a mystery fever, body/joint aches, no appetite and crabby attitude. I don't know how much more I can take. I'm feeling horrible for not enjoying every minute with my kids, and guilty for wanting time away from them.
I am extremely blessed in my life, and I know there are people far worse off than me. I just needed to vent. Any ideas people have on free or inexpensive ways to take a break or help me re-fuel would be more than welcomed! I have a lot of hope that the warm and sunny weather coming up will certainly help. Thanks for letting me vent :)
Thursday, March 28, 2013
WDSD
March 21st was World Down Syndrome Day. It is a day to celebrate people with Down syndrome each year. Last year on that day, I was probably celebrating getting out of my first trimester of pregnancy, completely unaware that there was such a day. I probably would have wondered why on earth anyone would CELEBRATE Down syndrome. Since Bryce's birth and diagnosis, I have been a member of this club...the club I didn't ask to join and the club I didn't realize existed. I have avoided being a part of the club. I have told myself that so far Bryce is just like a normal baby...that I have nothing in common with these people whose kids are sick or delayed. March 21st ended up being surprisingly emotional. I watched my facebook news feed flood with pictures of little faces like Bryce's. Little faces with flat bridges at the top of their nose....ears low on their head....short arms...big bright eyes...unadulterated smiles. I watched as Bryce's picture was featured right along side these other special kids, and realized I AM part of the club. My child is healthy, sure, but so are many of these other kids. No one else knows how it feels to learn your child has Down syndrome except the other members of this club.
My family and friends have been nothing but supportive. I can talk to my friends and family about physical therapy, delays, thyroid problems....but no one can really understand. I think March 21st opened my eyes and made me realize I need to stop being scared and reach out to others who DO understand. But it is scary. In many ways, I'm having to "face the music" now more than I have since Bryce was born. Now that he's coming up on 8 months, I am noticing a delay. I am getting scared about the fact that some day he's not going to be a cute little baby anymore. Some day he's going talk a little too loudly in a restaurant and people are going to mutter about him under their breath. I am getting worried about how I'm going to deal with it when someone calls him retarded. I always worry about how it will affect his spirit and his brother's life. I need to hear how other people have dealt with these things.
Despite my emotional take on the day, I was also completely inspired and encouraged by the photos and kind words I saw online that day. People with Down syndrome have normal relationships with their families. They can get married. They can work full time. They can live on their own and take the bus to work. They have feelings and thoughts and talents. I was also encouraged by the support. I am referring to an organization called Circle 21, which is a Down syndrome group out of Toronto, but it has members from all over the world. Their facebook page features pictures/captions of people with Down syndrome. About 2 months before WDSD, they put a call out for photos of people with Down syndrome with a sign saying where they are from. I submitted this picture of Bryce:
It was one of the pictures featured on their page on March 21st. I cried everytime I looked at it that day and read all the lovely comments from people all over the world. As of right now, Bryce's picture has 4,834 "likes" and 253 "shares". My boy's sweet smile touched that many people. If you figure each of those 253 people who shared have 100 friends who saw this picture, added to the 4,800 people who "liked" it....Bryce probably brightened over 25,000 peoples' day...even if it was just for a second. The awareness and support is so encouraging. There will always be "haters", but I really have hope that things will get easier for people like Bryce. Even if it's just my friends and family, or my few blog readers, my goal is make people see Bryce as a normal human being. I have gone out of my way since he was born to really look at people with disabilities. I didn't do that before. Working in a grocery store, I have had many opportunities to do this in the last 6 months. There is one customer in particular who has delays and wears a helmet. I always figured he couldn't even talk. One day he came to the service desk to buy a lottery ticket, along with his aide. I made sure to talk to him and asked him what he would do with all the money if he won. He said he's spend it on pretty blondes like me. Not only could he talk, he could flirt! He even came back to look at my ring finger and feigned being disappointed seeing a ring on it. It made my night, and if it weren't for Bryce, I would have completely overlooked this man.
Bryce's early intervention teachers have mentioned to me several times that they've never worked with a family who had a prenatal diagnosis. While we don't know for sure, this is most likely because 92% of people who get a prenatal diagnosis decide to abort. This breaks my heart. I am POSITIVE that if people were educated and exposed to people with Down syndrome this number wouldn't be so high. While I can't think of a single reason I would ever abort a baby, I can understand their fears and misunderstandings. I was forced to learn about Downs because my son was already in my arms...I had him and I was a member of this club no matter what. It was scary though. The day he was born, I thought life as I knew it was over forever. I was wrong. I am so shocked by the number of doctors who still suggest abortion or adoption for these kids. I have read stories that completely shock me. My doctors and nurses were nothing but absolutely supportive and I am so thankful for that. That day would have been so much more devastating if suggestions like giving up my baby were made. I can't even imagine. And it's still happening. A lot, apparently. I am wondering if there is a program in place in which families who recieve a prenatal diagnosis can talk to people like me...people already in the club who could assure them that life will not be over. If there isn't, there should be. 9 out of 10 sweet babies like Bryce never even given a chance to live! It's heartbreaking.
This ended up being a little more rambling and emotional than I intended, but it's been brewing for a week now. I still haven't figured out exactly what my new calling is--why God gave me Bryce--but I'm praying that I figure it out sooner than later. I think my first step is to stop avoiding "the club". Once I work up the guts, I am going to attend some kind of event or meeting. When I do, I'll be sure to let you all know how it goes.
Happy Easter everyone!
xoxo, Julie
My family and friends have been nothing but supportive. I can talk to my friends and family about physical therapy, delays, thyroid problems....but no one can really understand. I think March 21st opened my eyes and made me realize I need to stop being scared and reach out to others who DO understand. But it is scary. In many ways, I'm having to "face the music" now more than I have since Bryce was born. Now that he's coming up on 8 months, I am noticing a delay. I am getting scared about the fact that some day he's not going to be a cute little baby anymore. Some day he's going talk a little too loudly in a restaurant and people are going to mutter about him under their breath. I am getting worried about how I'm going to deal with it when someone calls him retarded. I always worry about how it will affect his spirit and his brother's life. I need to hear how other people have dealt with these things.
Despite my emotional take on the day, I was also completely inspired and encouraged by the photos and kind words I saw online that day. People with Down syndrome have normal relationships with their families. They can get married. They can work full time. They can live on their own and take the bus to work. They have feelings and thoughts and talents. I was also encouraged by the support. I am referring to an organization called Circle 21, which is a Down syndrome group out of Toronto, but it has members from all over the world. Their facebook page features pictures/captions of people with Down syndrome. About 2 months before WDSD, they put a call out for photos of people with Down syndrome with a sign saying where they are from. I submitted this picture of Bryce:
It was one of the pictures featured on their page on March 21st. I cried everytime I looked at it that day and read all the lovely comments from people all over the world. As of right now, Bryce's picture has 4,834 "likes" and 253 "shares". My boy's sweet smile touched that many people. If you figure each of those 253 people who shared have 100 friends who saw this picture, added to the 4,800 people who "liked" it....Bryce probably brightened over 25,000 peoples' day...even if it was just for a second. The awareness and support is so encouraging. There will always be "haters", but I really have hope that things will get easier for people like Bryce. Even if it's just my friends and family, or my few blog readers, my goal is make people see Bryce as a normal human being. I have gone out of my way since he was born to really look at people with disabilities. I didn't do that before. Working in a grocery store, I have had many opportunities to do this in the last 6 months. There is one customer in particular who has delays and wears a helmet. I always figured he couldn't even talk. One day he came to the service desk to buy a lottery ticket, along with his aide. I made sure to talk to him and asked him what he would do with all the money if he won. He said he's spend it on pretty blondes like me. Not only could he talk, he could flirt! He even came back to look at my ring finger and feigned being disappointed seeing a ring on it. It made my night, and if it weren't for Bryce, I would have completely overlooked this man.
Bryce's early intervention teachers have mentioned to me several times that they've never worked with a family who had a prenatal diagnosis. While we don't know for sure, this is most likely because 92% of people who get a prenatal diagnosis decide to abort. This breaks my heart. I am POSITIVE that if people were educated and exposed to people with Down syndrome this number wouldn't be so high. While I can't think of a single reason I would ever abort a baby, I can understand their fears and misunderstandings. I was forced to learn about Downs because my son was already in my arms...I had him and I was a member of this club no matter what. It was scary though. The day he was born, I thought life as I knew it was over forever. I was wrong. I am so shocked by the number of doctors who still suggest abortion or adoption for these kids. I have read stories that completely shock me. My doctors and nurses were nothing but absolutely supportive and I am so thankful for that. That day would have been so much more devastating if suggestions like giving up my baby were made. I can't even imagine. And it's still happening. A lot, apparently. I am wondering if there is a program in place in which families who recieve a prenatal diagnosis can talk to people like me...people already in the club who could assure them that life will not be over. If there isn't, there should be. 9 out of 10 sweet babies like Bryce never even given a chance to live! It's heartbreaking.
This ended up being a little more rambling and emotional than I intended, but it's been brewing for a week now. I still haven't figured out exactly what my new calling is--why God gave me Bryce--but I'm praying that I figure it out sooner than later. I think my first step is to stop avoiding "the club". Once I work up the guts, I am going to attend some kind of event or meeting. When I do, I'll be sure to let you all know how it goes.
Happy Easter everyone!
xoxo, Julie
Tuesday, March 5, 2013
It's been a while....
Hi Friends--
I've been having a bit of a blogger's block the past few weeks. Usually, by the time I get around to writing a post, I've been forming it in my head for a few days. There is usually something on my mind that I need to spit out. Not lately. That's probably a good thing. It probably means I'm adjusting to everything--staying home, being a mom of two, being Bryce's mom.
We are so busy. Friday is the only day of the week that we are just home, all day, with no plans or interruptions. Even though I'm now mostly a stay-at-home mom, I actually do work about 25 hours a week. Those 25ish hours are over the course of 4 days. Add that to physical therapy, ECFE, and early intervention teacher visits, and we have plenty on the schedule each week. I was so worried about being bored at home, but instead I am busier than I was when I was teaching. Of course, I didn't know I would have a child that needed PT and EI :)
Connor is such a little character and keeps me in awe constantly. His imagination is crazy. I'm so glad he's able to entertain himself, but some of his creativity has been getting on my nerves the past month or so. I'm trying my hardest not to squelch it, but sometimes I'm just not in the mood to respond to whatever character name he decides to call me that week (so far I've been Timon, Dory, Lightning McQueen, Crackle the Dragon, and the color purple) or say what he tells me to say (so that he can basically have a conversation with himself). I finally told him yesterday when he decided my new name was Dumbo that we are just going to be ourselves for a while. It's so nice to hear that little voice say "mommy" again!
He is also so stinkin' smart. I really need to start working on reading workbooks with him. He is fascinated by literacy (maybe he has some of his mother in him afterall!). He has loved letters since he was about 15 months old, but he now is really getting interested in putting the sounds together and is actually pretty good at sounding out short, three letter words. It's very cute listening to him try to sound out longer/more difficult words. It really reminds me again how difficult the English language is...."We don't make the 'e' sound in this word", "o and u combined make this sound", etc. We really need to stick to sight words, but he is just so ambitious :) He also knows that we read left to right, pause at periods, etc. It's just so natural for him. I said a long time ago I'd have him reading before kindergarten, and now I'm even more confident in making that statement. As a teacher, watching his language and literacy develop has been the most interesting thing I've ever experienced.
I have come a long way in my acceptance of Bryce's DS. It still stings a little when I see babies his age or younger doing things he can't do, but I've gotten better at giving myself pep-talks to get through it. When we first learned of his condition and were studying up on it, the struggles these people often have with language was (and still is) one of my biggest concerns. As I listen to Connor's vocabulary grow and watch him learning to read it scares me that Bryce most likely won't get there for a long time. He certainly won't be there when he's three. Language is just such a big thing for me. I just hope and pray that he is able to communicate effectively and that I can accept that it may not be his strong suit.
That being said, Bryce is doing AWESOME. I mentioned that he's been going to physical therapy for his torticollis. He has gotten so much better! We actually learned that his head tilt is most likely caused by something ocular. He went to the ophthalmologist a couple weeks ago and the doctor noticed a little muscle weakness/misalignment in his right eye. Most likely there is a little blurring or double vision when he looks certain ways, and he has corrected it by tipping his head to the side. Unfortunately, Bryce wasn't being consistent enough for them to tell exactly which eye muscles are the problem, but at least we have an answer. The PT had suspected that was it because his neck/back/shoulder muscles were so easily corrected....the muscle tightness is a result of the tipping, the tipping isn't caused by muscle tightness.
Our little champ has gotten so much stronger in the past few weeks. He is holding himself up so nicely in both a supported sit and when you hold him upright. I've been waiting and waiting for that head control and we've finally got it! He is also trying to belly crawl already. His little legs have been trying to go for a couple months, and now he is even alternating knees like an actual crawling motion. Unfortunately, he still face plants, though, and his little butt goes up into the air. Our next area to work on is getting him to bear weight on his arms while on his tummy so he can get the upper body crawling movements down. He is doing so well physically that we can start going to PT only every-other week now. I'm so incredibly proud of him and never take his health for granted. I'm sure a lot of kids with Downs have slower development because they have so many health problems to deal with. I can't say enough how blessed we are. He really isn't that far behind the normal curve for motor development, especially when you look at his adjusted age (5.5 months). He is just a rock star.
I give Connor a lot of the credit for Bryce's development. That baby's eyes are glued on Connor at all times, and whenever Connor is doing something physical, Bryce will start kicking and moving his arms like crazy--he wants to do it too! I'm so proud of both of my boys!
Well, I guess I had a few things to say afterall :) Take care everyone!
I've been having a bit of a blogger's block the past few weeks. Usually, by the time I get around to writing a post, I've been forming it in my head for a few days. There is usually something on my mind that I need to spit out. Not lately. That's probably a good thing. It probably means I'm adjusting to everything--staying home, being a mom of two, being Bryce's mom.
We are so busy. Friday is the only day of the week that we are just home, all day, with no plans or interruptions. Even though I'm now mostly a stay-at-home mom, I actually do work about 25 hours a week. Those 25ish hours are over the course of 4 days. Add that to physical therapy, ECFE, and early intervention teacher visits, and we have plenty on the schedule each week. I was so worried about being bored at home, but instead I am busier than I was when I was teaching. Of course, I didn't know I would have a child that needed PT and EI :)
Connor is such a little character and keeps me in awe constantly. His imagination is crazy. I'm so glad he's able to entertain himself, but some of his creativity has been getting on my nerves the past month or so. I'm trying my hardest not to squelch it, but sometimes I'm just not in the mood to respond to whatever character name he decides to call me that week (so far I've been Timon, Dory, Lightning McQueen, Crackle the Dragon, and the color purple) or say what he tells me to say (so that he can basically have a conversation with himself). I finally told him yesterday when he decided my new name was Dumbo that we are just going to be ourselves for a while. It's so nice to hear that little voice say "mommy" again!
He is also so stinkin' smart. I really need to start working on reading workbooks with him. He is fascinated by literacy (maybe he has some of his mother in him afterall!). He has loved letters since he was about 15 months old, but he now is really getting interested in putting the sounds together and is actually pretty good at sounding out short, three letter words. It's very cute listening to him try to sound out longer/more difficult words. It really reminds me again how difficult the English language is...."We don't make the 'e' sound in this word", "o and u combined make this sound", etc. We really need to stick to sight words, but he is just so ambitious :) He also knows that we read left to right, pause at periods, etc. It's just so natural for him. I said a long time ago I'd have him reading before kindergarten, and now I'm even more confident in making that statement. As a teacher, watching his language and literacy develop has been the most interesting thing I've ever experienced.
I have come a long way in my acceptance of Bryce's DS. It still stings a little when I see babies his age or younger doing things he can't do, but I've gotten better at giving myself pep-talks to get through it. When we first learned of his condition and were studying up on it, the struggles these people often have with language was (and still is) one of my biggest concerns. As I listen to Connor's vocabulary grow and watch him learning to read it scares me that Bryce most likely won't get there for a long time. He certainly won't be there when he's three. Language is just such a big thing for me. I just hope and pray that he is able to communicate effectively and that I can accept that it may not be his strong suit.
That being said, Bryce is doing AWESOME. I mentioned that he's been going to physical therapy for his torticollis. He has gotten so much better! We actually learned that his head tilt is most likely caused by something ocular. He went to the ophthalmologist a couple weeks ago and the doctor noticed a little muscle weakness/misalignment in his right eye. Most likely there is a little blurring or double vision when he looks certain ways, and he has corrected it by tipping his head to the side. Unfortunately, Bryce wasn't being consistent enough for them to tell exactly which eye muscles are the problem, but at least we have an answer. The PT had suspected that was it because his neck/back/shoulder muscles were so easily corrected....the muscle tightness is a result of the tipping, the tipping isn't caused by muscle tightness.
Our little champ has gotten so much stronger in the past few weeks. He is holding himself up so nicely in both a supported sit and when you hold him upright. I've been waiting and waiting for that head control and we've finally got it! He is also trying to belly crawl already. His little legs have been trying to go for a couple months, and now he is even alternating knees like an actual crawling motion. Unfortunately, he still face plants, though, and his little butt goes up into the air. Our next area to work on is getting him to bear weight on his arms while on his tummy so he can get the upper body crawling movements down. He is doing so well physically that we can start going to PT only every-other week now. I'm so incredibly proud of him and never take his health for granted. I'm sure a lot of kids with Downs have slower development because they have so many health problems to deal with. I can't say enough how blessed we are. He really isn't that far behind the normal curve for motor development, especially when you look at his adjusted age (5.5 months). He is just a rock star.
I give Connor a lot of the credit for Bryce's development. That baby's eyes are glued on Connor at all times, and whenever Connor is doing something physical, Bryce will start kicking and moving his arms like crazy--he wants to do it too! I'm so proud of both of my boys!
 |
| No amount of clapping, quacking, or name-calling from me could get him to take his eyes off his big brother! |
Well, I guess I had a few things to say afterall :) Take care everyone!
Thursday, January 31, 2013
182 Days
Today is Bryce's half birthday. It's been 182 days since the
retirement of our old life. 182 days since the world as we knew it
ended. 182 days since we took health and 'normalcy' for granted. We are
so blessed that both of our boys are so healthy. With Connor, I took
that health for granted. I was thankful, sure, but I guess I just
assumed he would be healthy. With Bryce, I fully realize how blessed we
are. Many babies born with Down syndrome are not so lucky. Many would
have been through a heart surgery or two in those 182 days. Many would
have had abdominal surgery by now. Why was our son spared those health
issues?There is a certain amount of guilt that comes along with that. It
is one of the things that holds me back from reaching out to other
families of children with Downs. I don't even know what we'd talk about,
because so far we have had it so easy.
That being said, now that Bryce is six months old, there are areas where I'm starting to notice a delay. Around Christmastime, we really starting noticing that Bryce had a strong preference for looking to the right. It became really obvious the more we had him sitting upright. Because he started baby food, I thought I'd try the Bumbo seat to see how he'd do. He has always had head control issues, but his neck had been getting stronger. What I saw when I put him in that Bumbo was alarming. He was leaning so far to the right. His head, neck, shoulders, everything was being pulled down to the right. We decided we really needed to get him checked out by a physical therapist again. They pretty much diagnosed him with Torticollis over the phone. It basically just means that his muscles on the right side are tighter than those on the left, causing him to tense on that side. Although this is a fairly common with all babies, I'm sure Bryce's low muscle tone didn't help. Along with Torticollis often comes a flat spot on the head (from always going to one side). Bryce's flat spot is moderate, and we will talk to his doctor about it at his six month check up. They will probably do a 360 degree scan of his head, and if it's bad enough he'll need to wear a helmet for awhile. I'm hoping we can avoid that by getting this under control soon, but we'll see. He's now attending physical therapy one day a week, and there are a few excercises and changes we are doing at home.
Because it's weighed down to the right, Bryce still struggles to hold his head up. I have noticed just in the past few days that he seems to be getting bored with doing the same old things all the time. It's as if other areas of his development are exceeding his physical capabilities and I feel so bad. I put him in a jumper seat the other day and he was so exctied to spin the dials/play with the toys, but he just slowly slumped over. It was heartbreaking. I hope this physical therapy works quickly so we can get that head steadier. He is so good at grabbing toys and putting them in his mouth. He rolls around, and also wants to start scooting on his tummy, but always face plants. Once he gets his neck strength built up, he'll probably be scooting around the house! I'm reminding myself to appreciate having a fairly immobile baby, 'cause life changes quickly once they start motoring around!
The other big thing on our minds lately is school. It's preschool registration time, and Connor will be going in the fall. Even though he'll have two years of preschool first, I have been thinking a lot about kindergarten. I always assumed my kids would go to Catholic school, because that is my comfort zone. It's where I went to school and where I have always taught. Now I don't know what we'll do. I want to have an idea of where Bryce will be better off before we make a decision for Connor. Right now we don't have any way of knowing how high functioning he'll be and/or if Catholic schools will be equipped/willing to take him. Then there are the social things to consider...will he be better off in a smaller, Christian environment or one with a more diverse population (and possibly even other kids like him)? It's been weighing so heavily on mind even though there is no way (or reason) to make the decision right now.
This turned into a pretty heavy post (I'm having a sad day today), but it really should be a celebration of this sweet baby's half birthday. We are so blessed to have such an easy, happy, healthy baby who has already taught us so much. In just 182 days I have gained so much knowledge and changed many things about my way of thinking. Even though there are still days that I wonder "why us?", and even though I know there will be many challenges to face, I don't think I would take Bryce's Down syndrome away. It's part of who he is--part of every cell in his sweet little body. There will be things he can't do because of it, but there will also be opportunities that open up for all of us because of it. He is a blessing just like his big brother. Here are a few recent pictures of our smiley, bright-eyed little guy.
That being said, now that Bryce is six months old, there are areas where I'm starting to notice a delay. Around Christmastime, we really starting noticing that Bryce had a strong preference for looking to the right. It became really obvious the more we had him sitting upright. Because he started baby food, I thought I'd try the Bumbo seat to see how he'd do. He has always had head control issues, but his neck had been getting stronger. What I saw when I put him in that Bumbo was alarming. He was leaning so far to the right. His head, neck, shoulders, everything was being pulled down to the right. We decided we really needed to get him checked out by a physical therapist again. They pretty much diagnosed him with Torticollis over the phone. It basically just means that his muscles on the right side are tighter than those on the left, causing him to tense on that side. Although this is a fairly common with all babies, I'm sure Bryce's low muscle tone didn't help. Along with Torticollis often comes a flat spot on the head (from always going to one side). Bryce's flat spot is moderate, and we will talk to his doctor about it at his six month check up. They will probably do a 360 degree scan of his head, and if it's bad enough he'll need to wear a helmet for awhile. I'm hoping we can avoid that by getting this under control soon, but we'll see. He's now attending physical therapy one day a week, and there are a few excercises and changes we are doing at home.
Because it's weighed down to the right, Bryce still struggles to hold his head up. I have noticed just in the past few days that he seems to be getting bored with doing the same old things all the time. It's as if other areas of his development are exceeding his physical capabilities and I feel so bad. I put him in a jumper seat the other day and he was so exctied to spin the dials/play with the toys, but he just slowly slumped over. It was heartbreaking. I hope this physical therapy works quickly so we can get that head steadier. He is so good at grabbing toys and putting them in his mouth. He rolls around, and also wants to start scooting on his tummy, but always face plants. Once he gets his neck strength built up, he'll probably be scooting around the house! I'm reminding myself to appreciate having a fairly immobile baby, 'cause life changes quickly once they start motoring around!
The other big thing on our minds lately is school. It's preschool registration time, and Connor will be going in the fall. Even though he'll have two years of preschool first, I have been thinking a lot about kindergarten. I always assumed my kids would go to Catholic school, because that is my comfort zone. It's where I went to school and where I have always taught. Now I don't know what we'll do. I want to have an idea of where Bryce will be better off before we make a decision for Connor. Right now we don't have any way of knowing how high functioning he'll be and/or if Catholic schools will be equipped/willing to take him. Then there are the social things to consider...will he be better off in a smaller, Christian environment or one with a more diverse population (and possibly even other kids like him)? It's been weighing so heavily on mind even though there is no way (or reason) to make the decision right now.
This turned into a pretty heavy post (I'm having a sad day today), but it really should be a celebration of this sweet baby's half birthday. We are so blessed to have such an easy, happy, healthy baby who has already taught us so much. In just 182 days I have gained so much knowledge and changed many things about my way of thinking. Even though there are still days that I wonder "why us?", and even though I know there will be many challenges to face, I don't think I would take Bryce's Down syndrome away. It's part of who he is--part of every cell in his sweet little body. There will be things he can't do because of it, but there will also be opportunities that open up for all of us because of it. He is a blessing just like his big brother. Here are a few recent pictures of our smiley, bright-eyed little guy.
Happy Half Birthdy, Brycey Boy! We love you!
Friday, January 18, 2013
What a Week!
What a week we've had. It started with a sleepless Sunday night for me. I have a major problem turning my brain off if I wake up in the middle of the night. With a baby around, there's a lot of waking in the middle of the night. We had an appointment at Minneapolis Children's Hospital Heart Clinic on Monday to get a follow-up echo of Bryce's heart. I knew his heart was fine, but I think that is what was keeping me up anyway. (I've mentioned that I feel like everything is too good to be true, right?!?)
Bryce had his first echocardiogram in the hospital when he was about two weeks old. It was fine...the only thing was a small valve opening between the two upper chambers--common in newborns. They wanted to do this follow up to make sure it was closing--the low muscle tone that comes with Down syndrome could make the opening stretch rather than close. His latest echo showed that it is closing--half the size it was. The doctor told us to put heart worries out of our head. Kids with Downs who have heart trouble are born with it...he is no more prone to developing trouble now than anyone else. Whew!
Our sweet, easy going baby was so good during all those tests too! He flirted with the nurses and didn't fuss until he was hungry an hour and a half into the appointment. No crying even when it took three nurses about 25 tries to get his blood pressure--his poor arms and legs even turned blue! He is the best baby ever born.
On Tuesday, I could tell that our poor little sweetheart was coming down with something. He was so fussy and sleepy. On Wednesday, he spent the day at my mom's house and progressively got worse. She finally called me about 3:45 and asked me to come home. His breathing was so labored when I got there, it was alarming. I had to take him right to urgent care, but wanted to call the ambulance. He just looked so miserable and like every once of energy he had went into concentrating on breathing. It was so scary! Connor was never sick until he was almost two years old, so we've never had a sick baby.
We made it to urgent care and they gave him a steroid shot and nebulizer treatment. He calmed down a little bit. They eliminated RSV and influenza with a nasal swab, and his x-rays were clear, so we weren't sure what was going on. They decided he should be admitted to the hospital for the night so they could monitor him, give him a nebulizer, and be there to help if anything happened. They allowed Mike to drive him to the hospital right down the street from us, where he had spent the first month of his life. He had a good night--only needed the nebulizer once. The docs there determined it was most likely croup. He is so much better now--just still tired and fussier than usual.
With Bryce being so needy, I feel like a horrible mother to Connor. I get so short with him because I'm exhausted, and he acts up or is annoying just to get my attention. I have realized again how lucky I am to have such an easy baby (usually) AND such a well behaved big boy. It has been a long, trying week--starting out with the good news at the heart clinic, and finishing with a sick baby and exhausted Mommy and Daddy. Here's to hoping this is the worst of the sickness in the Larsen house this winter!
I'm feeling a little burnt out right now--being a stay-at-home mom is definitely harder than teaching--but that's a whole 'nother blog post! I'm ready for Spring when we can get out of the house for some fresh air every day. Take care everyone!
Bryce had his first echocardiogram in the hospital when he was about two weeks old. It was fine...the only thing was a small valve opening between the two upper chambers--common in newborns. They wanted to do this follow up to make sure it was closing--the low muscle tone that comes with Down syndrome could make the opening stretch rather than close. His latest echo showed that it is closing--half the size it was. The doctor told us to put heart worries out of our head. Kids with Downs who have heart trouble are born with it...he is no more prone to developing trouble now than anyone else. Whew!
Our sweet, easy going baby was so good during all those tests too! He flirted with the nurses and didn't fuss until he was hungry an hour and a half into the appointment. No crying even when it took three nurses about 25 tries to get his blood pressure--his poor arms and legs even turned blue! He is the best baby ever born.
 |
| Little charmer! |
On Tuesday, I could tell that our poor little sweetheart was coming down with something. He was so fussy and sleepy. On Wednesday, he spent the day at my mom's house and progressively got worse. She finally called me about 3:45 and asked me to come home. His breathing was so labored when I got there, it was alarming. I had to take him right to urgent care, but wanted to call the ambulance. He just looked so miserable and like every once of energy he had went into concentrating on breathing. It was so scary! Connor was never sick until he was almost two years old, so we've never had a sick baby.
We made it to urgent care and they gave him a steroid shot and nebulizer treatment. He calmed down a little bit. They eliminated RSV and influenza with a nasal swab, and his x-rays were clear, so we weren't sure what was going on. They decided he should be admitted to the hospital for the night so they could monitor him, give him a nebulizer, and be there to help if anything happened. They allowed Mike to drive him to the hospital right down the street from us, where he had spent the first month of his life. He had a good night--only needed the nebulizer once. The docs there determined it was most likely croup. He is so much better now--just still tired and fussier than usual.
With Bryce being so needy, I feel like a horrible mother to Connor. I get so short with him because I'm exhausted, and he acts up or is annoying just to get my attention. I have realized again how lucky I am to have such an easy baby (usually) AND such a well behaved big boy. It has been a long, trying week--starting out with the good news at the heart clinic, and finishing with a sick baby and exhausted Mommy and Daddy. Here's to hoping this is the worst of the sickness in the Larsen house this winter!
I'm feeling a little burnt out right now--being a stay-at-home mom is definitely harder than teaching--but that's a whole 'nother blog post! I'm ready for Spring when we can get out of the house for some fresh air every day. Take care everyone!
Tuesday, January 1, 2013
2012: Year in Review
I have never been a huge fan of New Years. I for some reason always feel a little down....I think it's the passage of time, and feeling like another year has gone by without me accomplishing much. I don't really feel that way this year. Maybe because we're having such a nice, lazy, family day today...or maybe because it was such an eventful year. It was a tough year in many ways, but definitely eventful.
I blog mostly for myself...so I'll remember things. I so regret not blogging when Connor was a baby--there are so many details I don't remember about his first couple years. I have seen other people create "blog books" and I really need to figure out how to do that, so I can have all these memories on paper as well as in cyber space. Just so I can remember, here is a little Larsen year-in-review:
January 3: Connor gets his cast removed (he had broken his leg in mid-December and was such a good little trooper).
January 6: We find out we're expecting baby #2. This was a planned pregnancy, so I should have been really excited, but I was nervous from the start. Read about it here.
April 4: We find out via Level II ultrasound that we are having another boy. For both kids, Mike and I have asked the technician to seal the gender in an envelope for us to open in private later. On the ultrasound, they saw a little "light spot" on the baby's heart which is a MINOR marker for Down syndrome. None of the major markers were there, and our chances were still 1:360, so we put it out of our minds.Read about it here.
April: I officially make the decision to take a break from teaching to stay home with my kiddos. I knew in my head for a long time, but it was hard for my heart to make the final decision. Read about it here.
June 25: I get put on modified bed rest due to contractions and a positive ffn test. Sucky. Read about it here.
June/July: I make multiple trips to the hospital for preterm labor. They finally put me on some meds to supposedly ease the contractions. Poor Connor spent the summer bouncing between day care and time with a lazy mom on bed rest.
July 30: I go to bed with contractions that are about 12 minutes apart. I should have known it was real labor, but I'd had so many false alarms....
July 31: Our little Bryce was born at 8:40 am. About 20 minutes later, the nurses share their concerns that he may have Down syndrome. The entire week is an emotional blur. Read about it here.
August 1: It is confirmed via blood test that Bryce has an extra 21st chromosome. Read about it here.
August 24: We finally get to bring Bryce home from the hospital after 24 long days of ping-ponging between my boys.
September 15: Our loving families and friends attend the Bryce James Larsen benefit and raised more than enough money to pay off our medical bills. Read about it here.
October: We start the ball rolling to get Bryce enrolled in Early Childhood Special Education.
November 15: My big boy turns 3. This was a tough one for me...he is no longer a baby! Read about it here.
End of November: Mike starts a new job at Best Buy and is so much happier. Despite it being busier and more time consuming, I feel like I have my husband back after a year of being miserable at work.
December 22-26: Family Christmas celebrations--a reminder of what great families we have and how blessed we really are!
It was definitely an eventful, challenging year. But in the end, I have two healthy, happy little boys.One of my greatest blessings came out of 2012. I have adjusted (for the most part) to being a stay at home mom, and we still have a roof over our heads and food on the table despite cutting out a big part of our income. We are blessed, and it is my goal to never forget that. Happy New Year, everyone!
I blog mostly for myself...so I'll remember things. I so regret not blogging when Connor was a baby--there are so many details I don't remember about his first couple years. I have seen other people create "blog books" and I really need to figure out how to do that, so I can have all these memories on paper as well as in cyber space. Just so I can remember, here is a little Larsen year-in-review:
January 3: Connor gets his cast removed (he had broken his leg in mid-December and was such a good little trooper).
January 6: We find out we're expecting baby #2. This was a planned pregnancy, so I should have been really excited, but I was nervous from the start. Read about it here.
April 4: We find out via Level II ultrasound that we are having another boy. For both kids, Mike and I have asked the technician to seal the gender in an envelope for us to open in private later. On the ultrasound, they saw a little "light spot" on the baby's heart which is a MINOR marker for Down syndrome. None of the major markers were there, and our chances were still 1:360, so we put it out of our minds.Read about it here.
April: I officially make the decision to take a break from teaching to stay home with my kiddos. I knew in my head for a long time, but it was hard for my heart to make the final decision. Read about it here.
June 25: I get put on modified bed rest due to contractions and a positive ffn test. Sucky. Read about it here.
June/July: I make multiple trips to the hospital for preterm labor. They finally put me on some meds to supposedly ease the contractions. Poor Connor spent the summer bouncing between day care and time with a lazy mom on bed rest.
July 30: I go to bed with contractions that are about 12 minutes apart. I should have known it was real labor, but I'd had so many false alarms....
July 31: Our little Bryce was born at 8:40 am. About 20 minutes later, the nurses share their concerns that he may have Down syndrome. The entire week is an emotional blur. Read about it here.
August 1: It is confirmed via blood test that Bryce has an extra 21st chromosome. Read about it here.
August 24: We finally get to bring Bryce home from the hospital after 24 long days of ping-ponging between my boys.
September 15: Our loving families and friends attend the Bryce James Larsen benefit and raised more than enough money to pay off our medical bills. Read about it here.
October: We start the ball rolling to get Bryce enrolled in Early Childhood Special Education.
November 15: My big boy turns 3. This was a tough one for me...he is no longer a baby! Read about it here.
End of November: Mike starts a new job at Best Buy and is so much happier. Despite it being busier and more time consuming, I feel like I have my husband back after a year of being miserable at work.
December 22-26: Family Christmas celebrations--a reminder of what great families we have and how blessed we really are!
It was definitely an eventful, challenging year. But in the end, I have two healthy, happy little boys.One of my greatest blessings came out of 2012. I have adjusted (for the most part) to being a stay at home mom, and we still have a roof over our heads and food on the table despite cutting out a big part of our income. We are blessed, and it is my goal to never forget that. Happy New Year, everyone!
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