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.

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!

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!

Heavy Heart

My heart has been so heavy ever since the tragedy in Connecticut last week. My mother's heart hurts and my teacher's heart hurts. Every time I hear anything about it or even think about it, I get choked up. I have been trying to think of how to address it in a blog post, but I don't have anything profound to say.

Even though my kids are not old enough to be in school, my first thought after hearing about all those little lost souls was my own kids. When you put your child on the school bus in the morning, you expect them to get back off of it in the afternoon. I can't even imagine what those parents were feeling as they made their way to that firehouse, frantically searching for their kids. The joy and relief for those who found theirs....the devastation and fear for those who didn't. I can't even imagine. I don't want to imagine, but my mind keeps going there. My mother's heart hurts for them. So badly.

My next thought, of course, was of the teachers. The sheer terror they must have been feeling, while having to remain calm for their students' sake. My teacher's heart hurts for the feelings of guilt and helplessness they must feel. As a teacher, I always dreaded our lock down drills. Not only because it could sometimes be a long, boring, frustrating ordeal, but also because it always gave me the creeps. Often, during these drills, the police or school administrators will come rattle the classroom doors to make sure they are locked. That was always my least favorite part. I would instantly get the chills, imagining it being a real perpetrator. Even though I haven't heard too many details about what happened in various classrooms at Sandy Hook, I can guarantee those teachers were heroes, and I have appreciated seeing the outpouring of support for teachers since the ordeal. 

I won't get into politics or policy. I will not make any statements about gun control. The one thing I would like to say is that kids are safe at school. As safe as they are anywhere. We've seen, unfortunately, that tragedy can strike anywhere--malls, movie theathers, walking down the street... Short of keeping our kids locked up in a padded room, there's not much we can do to guarantee their safety. If a madman wants to commit a crime like this, they will find a way. Kids are safe at school. Their teachers love them. As Vicki Soto, Lauren Rosseau, and the other teachers at Sandy Hook did, teachers would do everything in their power to keep your kids safe. We know that each and every one of our students is someone's baby. Becoming a mother myself made me really realize and appreciate that. Every student is someone's most prized possession, and teachers don't take their responsibility lightly. We know that parents are entrusting their children to us during the day, and it is an honor to care for them.

My heart goes out to every child, parent, teacher, janitor, and first responder that was affected by this tragedy. Such a terrible thing to happen, especially at Christmastime.

Wishing everyone a blessed, safe Christmas!

xoxo, Julie

Too Good to be True?

Hi Friends,

   I guess it's been a while since I've posted, but time flies and we've been having some napping issues at our house (for both boys), so I don't have much of a chance to blog. I won't say that they are both napping at the same time right now, because that would jinx it :)

   I have been pinching myself a lot lately thinking that Bryce's health and development is too good to be true. There is a book called Babies with Down Syndrome: A New Parents Guide that is kind of the "bible" for parents of kids with Downs. I have learned that it is best used as a reference, rather than something to read from front to back. It scares the crap out of me. Some of it is so basic, it's silly (you need to give them baths....imagine that!), and some of it is so detailed it's scary. For someone with a history of anxiety like me, the chapter about possible health problems definitely should have been avoided. Because we have dodged some of the most common issues these kiddos can be born with (heart and bowel issues), I just have this terrible anxiety that it is only a matter of time before something happens. I feel like it's too good to be true. When I really read about all these possible health troubles, I realize that it's not worth worrying about. Many of them say 5% of kids with Downs may suffer from this or that....well, what percentage of 'typical' kids suffer from that? I have to keep this in perspective when I get on a worrying kick, but the two that really scare me are leukemia and epilepsy. Leukemia occurs about 20 times more often in kids with Downs than in other kids. Fortunately, for some reason, these kiddos also tend to respond to treatment better than other kids, so the survival rate is great, but one of my kids having cancer is one of my worst nightmares.

    I also know that there are people with Down syndrome that live long, full lives with little to no health problems. We actually met one of those people at our benefit. A young lady named Katie and her mom came to support us, and her mom said the only trouble Katie has ever had is chronic sinus infections. She also works full time and lives away from home. It is certainly possible, so why do I just feel like everything is too good to be true? Worrying is just part of my nature, I'm afraid. I have not said more prayers of thanksgiving to God than I have since Bryce was born. I thank Him every day for Bryce's health and pray that he stays that way. If you would like to join me in those prayers, I would appreciate it :)

   Bryce has changed so much in the last month, it's crazy! He is reaching out and grabbing everything within reach (including my hair!), giggles, loves being tickled, and just starting rolling from tummy to back the other day. Other than still having some head control issues (although his neck strength continues to improve), he is right on track with other 4 month olds and ahead of his adjusted age (according to What to Expect the First Year, anyway). He is still a content, easy baby, although his deciding he doesn't want to nap in his crib continues to be a pain in my neck. His early intervention teacher says that he is much more vocal than a lot of kiddos with Downs, so I'm hoping this means good things for his speech development later on.

    Connor and I were having some trouble getting along the last few weeks--mostly a result of him refusing to listen to me and throwing tantrums. My wise hubby pointed out to me that although Connor doesn't show resentment for Bryce, his acting out was probably a result of trying to get my full attention. Since that was pointed out to me, I've made more of an effort to just put Bryce in his bed with his mobile on, or lay him on the ground more often so I can focus 100% on Connor. We have been doing much better. He is such a good boy, and he has been very good about adjusting to having a brother around.

    With Christmas coming up, I'm not sure when I'll have time for another update, so I'll wish all my readers a "Merry Christmas" now. I hope everyone has a blessed and safe holiday season!

xoxo, Julie

P.S. If you have a moment, check out "The Pledge to Cure Pity"  (button/link on the right side of my blog). It is a great campaign to get all of us thinking a little differently about people with disabilities. They don't ask for any monetary donations--just to raise awareness. You can take the pledge and share that you did on facebook and/or your own blog.

Bryce at 16 Weeks

Boy, is time flying by! Somehow, our sweet baby is coming up on four months already. In some ways, it feels like he was born yesterday, in some ways it feels like a lifetime ago.

At sixteen weeks, Bryce is, in many ways, coming out of that newborn stage. He is much more responsive, which is so fun! He finally started smiling at us a few weeks ago, and although they're coming a little bit easier for him, he still makes us work for it. He has begun reaching for toys a little more purposefully and is very content to lay on the floor watching Connor or his toys. He is verbalizing so much. I love hearing those little baby sounds! Sometimes when he smiles he even does a little chuckle-type sound which makes me hope he'll start laughing pretty soon. He has found his hands, and often holds them together over his chest. He also likes to suck on his hands. He is still very active and can spin himself around 180 degrees when laying on his back.

One of the downfalls of coming out of the newborn stage is the fact that he can't/won't sleep through everything like he used to. He wakes up easily--especially when he hears Connor's voice, and for some reason has decided that he doesn't like to nap in his crib. He much prefers being held. Not always possible. Sorry, buddy. I realize that he doesn't need 20 hours of sleep a day anymore, but a couple hour long naps in the crib isn't too much to ask, is it? Needless to say, napping has become a source of frustration for Mommy and Daddy the past few weeks. He does fairly well at night...still gets up once or twice to eat, but generally sleeps (in his bed) well.


The early interventionists from the school district have completed their evaluations and will begin their weekly visits after Thanksgiving. His case manager/teacher will come out every week and the OT/PT will come as needed...probably about once a month. They will monitor his progress and give us things to work on that will fit into our daily routines. I really like all three of the women assigned to him, and will enjoy having them visit. His neck is getting a little stronger, and he can now hold it up for a few seconds, but there is still room for improvement. It is the one thing, physically, I still worry about, because I know it will set him back in other ways if he can't hold it up soon. (Still working on squelching my desire to compare him to other, "typical" babies.)

Bryce has already changed our outlook on many things. I find that I am much less judgmental of people who are different. I don't think I was really prejudiced before, but I didn't really think about people with disabilities much. It may sound horrible, but I guess I saw them as a little less human than the rest of us. I know now that I was so wrong. Now when I see people with disabilities, I force myself to say hello--to think of them as someone's child/brother/sister/friend--because I know that they are those things. If Mike and I want nothing else from Bryce's life, it is to raise awareness of Down syndrome. We already know that he is just as worthy of love as anyone else. He already has feelings and a personality like anyone else.

Recently, there have been many articles/stories in the news about people with Down syndrome. Many of these articles I have come across on Facebook. I like to think that maybe, just maybe Bryce has something to do with that. I know that as a country, people are becoming more aware and accepting (have you seen those adorable ads featuring babies with Downs??), but I also like to think that when friends and family come across those articles, they think of Bryce and want to share. Last week I posted this picture of Bryce smiling. It got 97 "likes" and 17 comments on Facebook. I honestly don't think it would have gotten such a response if he wasn't "special". I am overwhelmed by how accepting and loving our friends, family, and acquaintances are. Bryce is one blessed little boy!

Take care everyone!

3 Years Old!

Last Thursday, my first born turned three years old. Three. Three means no more pacifier. Potty training. PRESCHOOL. This has been a hard one for me. I just feel like three is so grown up. Like there's no going back. He's not my baby anymore.

Where has the time gone??

Birth Day

1st Birthday 

2nd Birthday

3rd Birthday

                                I am so proud of my big boy! Connor, you are my sunshine! XOXO....

Expectations

Hi Friends--

     While I've been working really hard on being positive and not worrying about Bryce's Down syndrome, I do still have my moments (days) when I feel sadness. Bryce has been doing so great, and I know we are blessed particularly with his health. I have told myself over and over again that I need to change my expectations for him. He most likely won't sit at six months. He most likely won't take his first steps around his first birthday. He most likely won't talk for a few years. Logically, I know that. Up until now, we've been able to kind of forget about it, because he is pretty much is doing everything he should be doing. As I mentioned in my last post, he actually exceeds expectations in a lot of areas.

     The other day, I tried to put Bryce in the baby swing again. The last couple times I've tried it, he couldn't hold himself up well enough to sit in there. He has now gotten really big, so I thought I'd try again. He looked so big in there. He seemed to fill the whole thing up! But he still couldn't hold himself up well enough. I left him in there for a few minutes, and he seemed content, but I was afraid to leave his side for fear he would cut off his air supply. It made me so sad. He's three months old and he cannot hold his head up. It has been the one concern I have had from the start. He is so strong that he can go up on his elbows and roll over during tummy time, but if you sit him up on your lap or shoulder, he can't hold his head up. Of all the issues we could have, I know this is a minor thing. I know that he won't be three years old and still unable to hold his head up. I know these things logically. I know logically that I need to give him extra time for things. But emotionally, it hit me. It snapped me out of the dream I have that he will be the exception.

     It is weird the things that hit me. Most days are fine, but we really are still on a roller coaster. Even though I feel like now that he is three months he starting to fall behind, there have also been some highlights over the past week or so. Bryce finally smiled for the first time on Halloween night. He has seemed to be on the brink for a month already (he just has a happy looking face), but that was the first time there was no question--he smiled back at me. I cried. It was so beautiful. Not only did it light up his whole face, but it was like an accomplishment. He has to try so hard to do it. First, he focuses really hard on our smiling faces, then his lips start twitching, then he scrunches up his eyes, and finally his mouth opens up into this huge smile. It is so sweet. I hope that it starts getting easier for him soon so we can start getting rewarded more often :)

    Another thing that has made me proud lately is the relationship the two boys are starting to have. I still worry about the day we have to explain things to Connor, or the day Bryce starts to think things are unfair, but I am hopeful that they will have a "normal" sibling relationship. Everything I have read tells me that these kiddos have normal love-hate relationships with their siblings and I know Connor will be a better person because of Bryce. Already, Bryce LOVES Connor. If he hears his voice, he will whip his head around until he can find him. He watches Connor so intently. He even smiled while watching Connor sing a song the other day. And Connor is starting to interact with him so much more and is always asking about Bryce's whereabouts. It is so fun to watch them together!

    I am still struggling with my expectations for Bryce. I want to keep my expectations high so I can push him to do his best, but I'm afraid I will continuously be saddened or disappointed. I hope I get to the point where I can just relax and let him progress at his own pace. I hope I get to the point where I can just applaud every accomplishment without thinking about how long it took, or what is coming next. I hope I get to the point where I can watch how hard he struggles and just be proud and inspired instead of sad. I know I will get there. I need to give myself time, too.

    I'll leave you with a few cute pictures :) Take care!

Brothers :)

First Halloween/3 months!

Working on that smile!