You've been masked!

Mask desensitization is our task. 

We can't start the trial with a CPAP machine until Owen shows that he can tolerate the mask. Our mission is now to get him to feel comfortable with it. Make it seem cool. Make him feel like a superstar in it. If this is going to work and help the little guy sleep he must wear the mask.

We started a few days early by taking out his nebulizer mask and asking him to wear it. New Years Day he had it on most of the day, carrying it around and either putting it over his mouth or pushing it up to rest on his forehead. We were surprised at how much fun he was having with it. I guess that is what happens when we act like it is the BEST thing in the world ;)

The nebulizer mask is at least a little fun since it has little fish pattern on it. We kept calling him Fish Man.

Today they came out for "the fitting" There were about 6 different masks to choose from. We asked him to try them all on. He cooperated. He was great. Some were to big, some seemed like he would pull them off or it wouldn't stay on since he moves around so much. And in the end we narrowed it down to 2 and let him choose. He hasn't wanted to wear it much since this but it is the first day. I think we need to dress it up a little, add some sort of stickers, give it a cool name, make it fun. Because calling it a mask just isn't going to cut it.

For good measure, Olivia tried it on to show Owen how cool it was to wear a mask.

Dad did too but I wasn't quick enough to snap a photo!

I hope this desensitization process goes as smoothly as the fitting went. Once we make it to 10-30 minutes of consistently wearing the mask we will move on to trying the machine. These situations always remind us how lucky we are to have Owen. To remind us how to appreciate little milestones like wearing a silly little mask can be such a big deal. He doesn't know why he has to do it but he knows it makes us happy. That is what drives him and we are so proud of him.

Happy New Year!

This is my year to get caught up [who am I kidding baby #3 will be here in 3 months], well I will try to start off the year with a blog to catch up on our happenings!

Gymnastics, Gymnastics, and more Gymnastics
The kids are still enjoying their Saturday mornings in Gymnastics. I have seen great improvement in Olivia's balance and Owen's strength in the last few months and I know it has a lot to do with the things they work on each Saturday.

They've been loving it so much we hosted Owen's birthday party at the Gym. It was lots of fun and even some of the adults got to join in on the jumps into the pit.

Ho, Ho, Ho, It's Christmas time
Olivia's preschool had a christmas program at a church near by. I had no idea it was coming so we hadn't practiced anything with her. But she was brave and stood up front, looking a little shy but no tears. I was so proud of her attempt. They sang some songs and she just stared. It was a great first experience for her.

Thankfully we have and nice weather so my mom was able to come up for a weekend to celebrate christmas this year. We had a great time spending the day together as a family. And the kids of course loved opening presents and playing with all their new things.

Owen got a castle from grandma and grandpa. He was in love.

A christmas eve dinner party at my dads. And Olivia doing her typical pout face. 

Missing one little dude for this picture but it would have been a bit tough to get him to participate.

Christmas morning. It was early but they were both excited to see what Santa brought. No lumps of coal. But a few things to make them happy. This was the first year Jason and I could actually sit back and watch them open their gifts. The gasps were priceless.

After our quick gift opening we headed back to Shoreview for the final christmas gift exchange at my dad's house. It would not have been complete without a visit from a dog dressed as a reindeer of course.

Two happy kiddos.

I love that Owen loves his books so much. We had to convince him to open the rest of this presents after he unwrapped these books. He was completely satisfied taking a break and reading for a while.
 
We've had a few more birthday celebrations for Owen. Including a trip to the MOA on his birthday for an adventure on the rides, a lunch at Rainforest cafe and a visit to build-a-bear to make his day a little extra special.

 
To top off the week Owen had another playdate with a buddy from school. Barrett came over to play and Owen was OVER the moon excited. They played great together and lots of hugs as they said goodbye.

What do you do when you turn 6? Start losing your teeth of course!

He has had 2 wiggly teeth on top. The darn black one and the one right next to it. He woke up on Thursday and I noticed the "white loose" one was out of place a bit. I knew it wouldn't be long. Dad and Owen were goofing around a little to much in the afternoon and Owen got kicked in the mouth. A little blood later and Owen reached in his mouth and just yanked the tooth right out. I was so hoping it would have been the black one to go first! He has 2 more on the bottom going through the same situation. Soon he will be a little toothless monster!

Olivia has been terrified that her teeth are going to fall out.

She asks just about every day if her teeth are going to fall out today.

Having Owen's fall out right in front of her has not helped ease her fears!

 
A few other things to sum up our past few months...

• ENT and Audiology followups for Owen. Hearing tests were the same as last year so no changes there, yay!
• Jason decided it was time to splurge and upgrade my DSLR camera and got me a Canon 60D for christmas. I am one lucky girl! Unfortunately Olivia's foot has already come in contact with it and it now has a broken screen - I guess I am not so lucky - but it should be fixed soon.
• I am now officially 25 weeks pregnant! This pregnancy is going ok. My history of contractions are already repeating themselves but I know what to worry about now and just need to slow down a bit.
• Our journey with the CPAP machine starts tomorrow. Fun - no.
• Olivia's favorite phrase, "Are you happy with me?" I guess she thinks she gets in trouble a little too often.
• Still haven't sold the house. Lots of interest just no offers yet. It only takes on though right?! They better hurry up this baby will be here soon!

Sleep tight little one.

Why is he acting out? Why is he having tantrums? Why does he always seem exhausted at the end of the day? Why does it seem like such a struggle?
Questions we’ve been asking.

Answers we’ve been given.
He needs sensory input. He needs a nap each day. He needs to be able to fall asleep on his own. He needs behavior modification. He needs timeouts. He needs a picture schedule.

I called his ENT. I made an appointment. I asked for them to call in an order for a sleep study. It has been over a year since his last one and I frankly didn’t know what else to do at this point. We need some real answers. The sleep dr. called and said it isn’t going to tell them anything we don’t already know. He has mild apnea but not that bad. But come in to the office and we will chat about it.

So we went to the sleep clinic. Talked to the dr. for over an hour about what we see, what we experience, what our routine is like, why we want another study. He agreed there’s obviously something going on. But his main conclusion is Owen just isn’t getting enough sleep (even though he “sleeps” for 12 hours each night) he believes he still needs a nap. His suggestion…get him to fall asleep on his own each night so he isn’t comforted by us laying with him. Then maybe during school he will take a nap.

The alternative suggestion? A stimulant to help him make it through his day. Ritalin. That is the easiest fix. The other one? A cpap machine but he just didn’t recommend that since he thought it would be to difficult and not sure the apnea is that bad to need it.

No one thought another sleep study would be needed. No one but Jason and I - so we pushed for it and asked. It felt like there was more to this story. Jason spent Thursday night with Owen at Childrens Hospital. Maybe Owen knew we needed him to show the dr.s what was going on. Maybe we just go lucky and that night Owen decided to let them hook it all up. Whatever the motivation it worked. He didn't refuse like he has every other time. He didn't try to yank every cord out like he has every other time. He cooperated. He was a trooper.

It was a rough night. But they both made it through. And then I got a call the next day from the sleep dr. It seemed that sleep study showed them a significant disruption in sleep. A big enough difference from last time that they now think the CPAP is what we need to do to help this little guy sleep better at night.

We start our new journey sometime this week. We are hopeful this is the answer he needed.

It isn't always about learning your ABCs

At the beginning of the school year I worried we hadn't prepared Owen enough. He wasn't ready for reading, math programs, science, writing and knowing his ABCs. I was so worried about how behind he is. Each week this worry gets pushed a little further away. The worry is there, we still push him to try to keep up. But I have learned in the last few months what is really important right now. Right now for Owen, it isn't about knowing his ABCs. It is about building relationships. Making the right choices. Being a good partner. Communicating in the right way. That is where he is thriving and I am so excited to see this because it is something very positive to focus on. We don't always get to focus on the things that are going well. Mostly the conversations are about the struggles and trying to solve the problems. But it seems that if we shift this focus it gets a little less overwhelming.
I am not sure I would be able to make this shift without the help of his teacher Mrs. Schnackenberg. So if you are reading this Susan, thank you for opening my eyes to this. Your daily emails are always so positive. Always a perspective that reminds us what he is doing well. Sometimes there is a bad report, but it is in a tone that makes it seem like no big deal. But I know my Owen, and I know he can be tough to handle sometimes ;)
He has a few kiddos in his class that are always on his daily report as sitting next to him at a program or playing with him at free choice. He is making some long lasting friends. Opening their hearts to the differences he has. One of them is a little girl named Olivia. She motivates Owen, she watches out for Owen. Sometimes reminding him but always being a good role model for him. We invited her to his birthday party but unfortunately she has plans. She was pretty disappointed so her mom sent me a note asking if they could have Owen over to their house to play. She wanted to give him a little gift and to spend a little extra time with him.
It was one of those emails where my heart stopped. It was that moment of acceptance that I have always worried about. It came unexpectedly for me. It may just be kindergarten but it really is the beginning of the journey. Olivia may not know the impact she has on him but we do. And we are so thankful to have her as Owen's friend.

How did he do? About how I expected. I let him play there by himself. I stayed for a few minutes then left him there. He of course wasn't nervous or didn't get shy or sad when I said I was leaving. He just waved, said bye mom and told me "Merry Christmas". They played for a little over an hour and then I picked him up. He didn't want to go home but then finally understood it was time to go. He still doesn't understand the concept of boundaries or manners all too well so he was all over their house. Upstairs, downstairs, in everyone's bedroom you name it, he explored it. Thankfully Olivia's parents were very understanding and just went with it.
A simple gesture of a playdate has gone a long way for Owen and for us. It has opened our eyes to the potential of being treated just like everyone else. He is after all more alike than different.

I am thankful for times like these where we have such good things to think about. To know that things are going well. To know he is doing well with something. To put one of our worries away for a while.

The guy in the red suit and white beard is SCARY

Owen used to be fearless. Completely willing to do anything, talk to anyone and jump off the highest of platforms. Lately he has started to develop some fears. He is afraid of the rain. He doesn't like when it snows. He is afraid of the dark. And now the big one, he is scared of Santa.
We have been talking about Christmas with him to get him excited about the season. Except anytime we mention it he always responds with "No Thanks". Not only is he afraid of the Santa in person he is afraid of anything to do with Christmas because he knows Santa is part of it.
This weekend my work hosted a Christmas party for the kids including a Santa. I thought what a great low key event to try and show him Santa really isn't scary....
We walked in the doors and approached the long hallway where we could see Santa sitting in his chair at the very end. Owen immediately tried running back out the door and when we tried to catch him he collapsed to the floor and just started screaming No! I thought man are we really torturing him by being within sight of a real Santa? We scooped him up and walked in a different way. We tried to let him get acclimated to the environment and then just sat on the floor where we could see Santa. He clung to us, heart racing saying no no no no no. I just reminded him we were just there to wave to him. And so he waved "bye Santa".
We inched our way closer a little bit at a time and finally just set him down on the floor next to Santa. He finally got up the courage to walk up to Santa and told him "I'm scared". It was one of those times were I was so impressed with him using his words I almost forgot to work on getting a picture! He touched Santa's arm and then I put him on his lap and there he sat. No crying. No trying to get off. Just completely stiff. And then guess what, I couldn't get him off. He just wanted to talk to Santa and give him hugs.

A simple trip to sit on Santa's lap isn't as simple as it once seemed. This photo took 30 minutes to take. I am glad we didn't attempt a trip to the mall this year because there is no way the people waiting in line would have allowed us that 30 minutes!

It is such a difference in situations. Through the whole experience Olivia just waited patiently for Owen to "be brave" and kept reminding us that she wasn't going to cry because she wanted to be brave and tell Santa what she wanted for Christmas. At times I wondering if it was really worth it. But then we got home and it is all they talk about. Olivia reminding us she was so brave and she got to sit on Santa's lap. And Owen repeating that he is a "good boy".
And then came Sunday, Owen went to another Christmas party with Auntie Erin and Santa was there. He was afraid of Santa again. Maybe next year it will be better...?

It's the most wonderful time of year...

We have had some really good days lately. We are so thankful for that! I love this time of year for a few reasons. It means lots of birthday celebrations. It means we get to spend extra time together as a family. It is a magical season of family traditions, remembering what is important and putting an extra focus on what you are thankful for.

To start off, I will say I am thankful that behavior treatments are fun.

I am thankful Owen decided to venture out to play in the snow instead of being afraid of it.

Watching him put on those snow pants and step outside was a big moment.

I am thankful we get to experience this season with Olivia. She has such an amazement with the littlest things. It is a daily reminder of what is important.

I am thankful that whatever the occasion, Owen can turn it into a rockstar moment. During our tree decorating time, Owen found a guitar and a little santa that had some arms that were aching to play it.

I am thankful for new holiday traditions.

Our elf on a shelf has been a huge hit. We are supposed to name him but neither wanted the task so this year his name is "elf". Maybe next year they will be a little more creative. I was a bit surprised at how into it Owen is. He keeps talking about this elf and his magic. He talks about him flying for Christmas. The first morning he woke up after we read this story he went downstairs and it was the first thing he did was try to find the elf. He didn't remember it's name so he just came up stairs and he told us he couldn't find the Magic! Olivia is also very into this story and she has been altering her behavior a bit since she knows the elf is watching her and sharing the stories with Santa.

We have so much to be thankful for this year.

one of those weeks

This is one of those weeks where you wonder how much can one be tested!

I had a pain that felt like a VERY bad bladder infection on Saturday morning. A trip to the quick clinic said they saw some signs of an issue but they needed to do a longer test. They gave me some antibiotics and sent me on my way. It felt a little better Saturday night and Sunday but Monday hit and bam it was painful again. The test came back negative so of course it had me worried. But Tuesday I knew exactly what it was since I have already been through 3 kidney stones. Thankfully it passed that morning. Nothing like being pregnant and being in that much pain! Of course Jason was out of town and Owen decided he was going to have trouble sleeping as well. I do not want to make it through another night like that anytime soon!

I had my level 2 US this week as well. I was very excited to find out if it is a boy/girl. But I forgot how stressful those appointments really are. Watching as they spend a little extra time on each little thing and when they go quiet for a bit it always makes me nervous. I kept having to tell myself to breath, everything will be ok! Everything is ok. And now I know if we will welcome a girl or boy. No one else will know but me and that US tech until baby day. Feel free however to try to get Jason to change his mind!

I called Owen's ENT last week to find out if we can get another sleep study. He of course ordered it since we had talked about repeating it every year and we were due. I thought it was time since we need all the solutions for this behavior problem as we can get. We know he doesn't sleep well and we know that affects his behavior. So another study it will be.
After the order was submitted, I got a surprise call from the sleep doctor (sorry I have no idea what their title is!). He called to warn me the next step will not be easy. Ugh. Not really something I wanted to hear but I appreciate that he called to suggest we have a session with him to talk things over. I am hoping he might have some strategies on how to improve Owen's sleeping.

This is what happens when we walk in the door at night. We make it about 5 feet from the door before a complete melt down happens. The trigger is always different. Today it was because he wanted to play Olivia's leapster and I said no.

There are situations like this where we feel like we are all alone in this struggle. Unsure how to strategize and get through these 15+ minutes of torture. Torture for us as parents, torture for Owen and torture for Olivia. But what I appreciate is knowing that we always have someone to turn to. We know there are other families like ours that struggle with this and I know that when I bring Owen to his Therapy sessions (old and new) they are always willing to brainstorm ideas on how go manage this. And then we don't feel so alone anymore. That is what makes us stronger. That is what helps us through and reminds us to keep trying.

I am thankful tomorrow is Friday and Jason is finally home. Now if someone could just figure out how to get our house sold so I don't have to keep it so clean that would be peachy!