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.


Photo: Look at those big brown eyes! Love this baby.

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.

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 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!