Sleep should be peaceful, right?

We had a pretty big appointment today for Jake with a sleep specialist and an ENT (ear nose throat) at Children's. The appointment started at 7:45 and we dropped him off at school at 10:30-so a long one. We have never had a dual appointment for him so this way new and all came from his last sleep study in September. I got a call that he was "much better" but still needs to wear the CPAP at night (our biggest challenge EVER). So we went to this recommended appointment and my head is still reeling.

Here's a few things he got done: scoped (a small camera inserted through his nose that looked all the way down to his airway for 2 minutes-longest 2 minutes ever when Jake is kicking and takes 3 people to hold him down), and EKG (many kids with sleep apnea have enlarged hearts due to the extra work required) and a blood draw (to check his iron levels-sometimes can be an issue with kids with sleep apnea).

He obstructed 65 times an hour in October 2015 (before his tonsils were taken out and a spongy thing in the nose-very technical). Sixty-five. Clinically they consider 5-10 episodes and hour severe. Jake had 65. That was never presented to me in that way and I had to pick my jaw up off the floor. Since his tonsils were removed and the spongy thing (plus they fixed his deviated septum) he had 10 episodes per hour in September 2016. Improved is an understatement but he is still clinically severe. We have a few things to work on in the next few months.

1. He will get his palate spread with orthodontics
2. He will start on an iron supplement
3. He is taking flonase and singluar every day
4. Daily nasal rinses with a rinse kit
5. We will try a new CPAP mask (see the picture below!)
6. He will go to a desensitization clinic appointment so we can reintroduce the CPAP in a positive way
7. He will do an under anesthesia "sleep study" to watch him very closely and scope him to see what is obstructing him
8. Cranial facial surgery will be in his future to reconstruct the area under his eye (bones)

It has been A LOT to digest. I am so thankful Bobby was there to hear everything with me. I didn't know what to expect but I feel so confident about our steps going forward. Poor little guy was put through so much today and I hate to see him cry.  He was NOT having anyone come near him at the end so much so that they were literally loading him up with new stuffed animals and toys and stickers. :) He walked into school and turned to me and said, "Bus?" So happy to be able to remind ourselves of what it feels like to appreciate what he loves and to remember on step at a time. He's a happy, happy little boy and for that we can always be thankful.

This is the new CPAP mask we are trying. In the next couple of months we will also try a new machine that could make a difference for pediatric sleep apnea. 

In case anyone is wondering, Jake still cries for his waffles every.single.morning. You better put a hustle on it and have them waiting for him when he comes down. Ha!

CSU Game

Yesterday was our very last CSU game at Hughes Stadium. The new stadium for next year is in the process of being built on campus. It will be fun to go to the new stadium but I will miss the old one. I asked my dad yesterday just how I old I was for my first game and he replied, "About 3 1/2 months old. People used to pass you all around." This place will be missed so much. I have the most wonderful memories with family and friends and I am so sad to see this end. It has been so incredible to share this with my kids. We had so much fun yesterday and I can't wait to experience it all next year-in a different place.

Superfan Brooklynn kept yelling, "GO RAMS" at the top of her lungs. 

We have a picture from just two years ago of them SCREAMING at the top of their lungs so this picture was much better!

I just love, love, love this picture so much.

A hidden "bird" in this picture. Thanks, dad. 

Halloween 2016

Jake spent his last PT appointment with his awesome therapist walking around the strip mall where  he does therapy in Littleton. We didn't know but she has gone to the other businesses and given them bags of candy so that Jake could walk (a long way!) to trick-or-treat in their store. He used his device to say "Trick-or-Treat" and I watched as he walked off with his cute cowboy hat on, ready to go. It only took him one time to remember and get the connection between using his device to say, "Trick or Treat" and getting candy. He was all over it! They came back and he came up to me and said "Trick or Treat" and it was so Jake-hilarious!

This year Avery and Brooklynn have been asking about Halloween for weeks. They have been excited to see pumpkins, carve pumpkins, paint pumpkins, and think about what they wanted to be. Every day they changed what they wanted to be. One day Ana and Elsa, one day a piece of pizza, one day a unicorn. I went by myself to the costume store and figured out that costumes now cost upwards of $40! I saw a cute pair of mouse ears and a tail and thought the 2 (not 3) blind mice would be cute, quick, and easy. When they saw their costumes they were *kind* excited but HAD NEVER HEARD OF THE THE 3 BLIND MICE! We spent lots of time showing them the rhyme on you tube and Avery learned to proudly tell her classmates that they were the "2 blind mice".

One mouse was all attitude in the morning and refused to smile. 

Halloween could not have been more exciting for everyone (despite the fact that it was on a Monday. Blah). The girls couldn't wait to dress up after asking about their costume for weeks. Happily they all went to school, Jake had a parade and a party. We headed out just after dark and did a few streets until Jake was ready to head home. He did an INCREDIBLE job using his device to say "Trick or Treat" and it was amazing to see his independence. The girls and I headed to a few more streets until they announced and agreed that they were ready to see Becca and Olivia, our incredible neighbors. I can't believe another Halloween has passed and it's on the the next holiday-our favorite! :)

Happy Birthday JAKE!!

It comes as no surprise that we have one of the most social, loving, and cared about little boys on the planet. We have never done a birthday party for Jake with school friends-and for as much anxiety as this gave me, we decided to give it a go! Planning a birthday party is already stressful but I don't know a lot of the kids that Jake really likes and I wanted to do something that all of the kids would like. Jake doesn't like jungle gym type things and other activities can be physically limiting for him. I decided to keep it simple and do it at a park (I got an awesome recommendation from a co-worker) and I enlisted help from Jake's SLP at school for kids to invite.

We played games, had pizza, and it went off without a hitch. He is one loved little boy and I was blown away by everyone's kindness for our best boy. It was exactly what I pictured and the most important thing is that Jake had the BEST day ever and certainly loved seeing all of his friends come out to see him. We have such amazing family and friends who continue to support our family.

Jake's BIGGEST supporter in our family. Avery has been so incredible with Jake and he is so lucky to have her on his side. 

Two of Jake's very best friends, Nate and Matthew! We love these boys!

Always with the ladies!

We LOVE Ellie! 

We Uncle Mike is doing this, this year! Getting Jake on skis!

Silly string was AWESOME! Jake highly recommends this for every event

School Days!

This summer went incredibly fast! We had so much going on with Jake and Adam's Camp that it just flew! I think we are all ready to be back in the swing of things-and I know one little boy who missed the bus so so so much!

We decided to have Jake ride the bus on the first day of school this year. Since it is also my first day of school, I can't be there and last time Bobby dropped Jake off it was a mess. Very traumatizing for both of them. :)

He was so happy when the bus pulled up and he is having the best year so far. Jesse is in his class again and Jake and Jesse get each other laughing so hard-especially since they have Adam's Camp in common. Jake has officially taken over the job of pushing Jesse's wheelchair and couldn't be any happier about it!

The girls started a few days after Jake and were so happy to hear that they have the same teachers they have both had for 3 school years now! We switched to afternoon preschool and so far it has been going well. We thought they'd be so exhausted from school that bed time would be a breeze but not so much. They have all the energy in the world and seem to get more right around bed time. Lovely. 

They are talking about kindergarten non-stop and I know it will be here before we know it. We are going to enjoy this year and watching these two hilarious little girls grow even more. They are do say some funny things!

We had a celebratory stop to get fro-yo after school. Filled with Oreos, brownies, sour gummy bears, sprinkles, M&Ms, strawberries, and whipped cream. Yum. 

Sand Dunes

After camping with Uncle Mike and Aunt KJ earlier in the summer and having the kids LOVE their tent, I asked Aunt Han if she wanted to do a girls-only (if you know how my husband feels about camping then you'll understand why I left him out of this little trip) camping adventure! She already had a planned trip to the Sand Dunes with one of her friends so we tagged along. It was so much fun. The girls were mostly good in the car-it was a long drive and while I was prepared, you forget how long 4 hours actually is. Brooklynn has the smallest bladder on the planet so I knew that would be an issue and require us to take our time getting there. It was windy when we arrived Friday night and Meghan and I died laughing trying to set up her tent. By the time we got to mine, I realized we were missing an important part-the stakes. So Avery, Brooklynn, and I all snuggled up in the back of my car and it couldn't have worked any more perfectly actually.

Saturday we adventured all around the Sand Dunes and according to my Fitbit, we walked over 7.5 miles that day (in the sand) and the girls had to do more because they didn't slow down at all. They complained for a while and then eventually came around had the best time. They were the best entertainment even during a rain storm that DUMPED on us. They will be ready for more adventures next summer. I'm so glad that Aunt Han puts up with the good, bad, and the ugly with me!

Adam's Camp

I could write a novel about our week at Adam's Camp. It was everything and SO much more than I ever thought it could be. It was all about Jake-but Avery and Brooklynn too-and a little about parents which made it all around the very best for our family.

Bobby had just started his new job with On Star just 2 weeks before so he wasn't able to come with us until the last 2 days. We stayed in an adorable cabin with 2 bedrooms (one with a bunk bed and a twin bed so all three of the them shared a room), one bathroom, and a full kitchen! We shopped for lunch food on the way up and the girls couldn't have been more excited to bring their lunch from home for the first time.

The first day we check in we had to hightail it to a meet and greet wine welcoming for the parents. The kids were all dropped off at sibs camp and at therapy camp. I dropped off the girls first and Avery said to me (loudly), "There's Mr. Kerry!!!!" which of course I shushed her to be quiet. Then they both SHRIEKED and took off running! It was Mr. Kerry, the infamous OT from their preschool. While they don't get services from him, he is in both of their classrooms everyday so he knows them well. They had the best week ever hanging out with him every morning and afternoon when the sibs campers got together. Jake was not happy about being dropped off with the other campers and he cried and cried.

After meeting the other parents in our squad, it suddenly dawned on me that one of the kids is a boy when has been in Jake's class for 2 years now! I had never met his parents but just immediately loved them both. They live really close and we have been talking about getting together again. They had all of the parents over on the last night for a "goodbye" dinner.

The first day they were all up early and ready to go! I dropped the girls off first (with no problems-and I don't actually think they even said bye to me because Mr. Kerry was there!). Dropping off Jake was rough. His goal for the entire week was to be flexible and work on transitioning. Day one was filled with lots of tears but they were able to distract him easily. He got to do something big each day (so did the girls) incorporating his 5 therapies (PT, OT, SLP, Music, and play). He did canoeing, wall climbing, went to the indoor water park, horseback riding, and the tubing hill. Each day after the first he cried less and less when I dropped him off. On the second day his device died and I had to bring the charger. I was really worried that he would cry so I suggested that I would just leave it outside the door for them-but his SLP suggested (brilliantly) to have him practice a transition seeing me. I walked up and asked him about his day so far and he interrupted me and said, "BYE!" My jaw hit the floor and I walked away so proud of him.

During the day I was able to go to a few parenting classes, one on sibling relationships (a therapist had spent time with the sibling camper), got great resources, hiked, read, and shopped. The 6 hours a day was BLISS but I sure did miss my kids and couldn't wait to hear about their day.

Each night there was an event to go to, a campfire, parent's night out, music in the park in Winter Park, and the night we went to Jake's best buddy Jesse's cabin for dinner. Bobby was able to join us the last night and it was so wonderful to have him there for the closing ceremonies and for Jake's 1-hour conference before we headed home. It was the most wonderful week ever and I know I will look back at this experience and smile for a very long time.

Get ready for picture overload!