Fall 2014

 

Superhero Central!

The fall was a busy time. Nate’s sleep was still a work in progress. In October, he continued to wake up multiple times a night and wake for the day earlier than the birds. It was beyond frustrating because when a kid doesn’t sleep, they are miserable for the day, especially Nate. He was starting to make strides behaviorally and I wasn’t ready for him to take a step backwards.  During that time, we also, on the advice of our pediatrician, removed cow’s milk from his diet. I dreaded that day as it was the only thing he would drink other than water. But, after all of the bouts between constipation and diarrhea, taking Miralax on and off at the beginning of 2014, it was time. It didn’t take him that long to begin to realize that water was the only option at that point. Plus, his stomach was thanking him. He was no longer going 8 times a day!

In October, we announced that we were teaming up with the Pediatric Low Grade Astrocytoma Foundation (A Kid’s Brain Tumor Cure Foundation) to help raise funds to pediatric brain tumor research. We officially created Team Nate the Great and began fundraising. We were excited that our simple bracelet idea was transforming into this. We, at that point, knew how lucky we are with the prognosis that Nate has. Our job now is to spread awareness and help find a cure in any way that we can. Team Nate the Great

We continued through the fall with all of its beautiful activities….apple picking, pumpkin picking, Halloween, and getting ready for Thanksgiving. The boys love to spend their days outside as much as possible and we were finally excited for Halloween! Benjamin decided to be Luke Skywalker and Nate was, of course, Pete the Cat. If anyone knows him, knows of his love for Pete the Cat and those groovy buttons! :)  Benjamin was so very proud of himself for finally going Trick-or-Treating. He was always a little too scared to go previous years, but this year, he was determined to press those bells and say, “Trick or Treat!.” Nathan even accompanied him up to some of those doors. It’s amazing to watch your kids grow and thrive, even for the silliest reasons.

playing in the leaves

walking the rail trail

pumpkin picking

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The beginning of November, we finally caved and met with a sleep consultant in Boston. They reviewed all of my endless data (I may have an issue with data collection!), decided to tweak his schedule, and told me that it was imperative to be strict about it. Yeah, we’ll see! :) So, his new bedtime was 10:00 at night and he was to be woken (if he was still sleeping….ha!) at 6:00. He needed to nap from 12:00-1:00 and that’s it. No more, no less. Strict. He was not a fan of the new schedule. Waking him up from the nap was torture and most days was ready to fall back asleep as soon as he left his room. Not fun. 

We had already planned to go to Florida during the second week of November, which meshed well with that new sleep schedule. Just kidding! But, we made the best of it and worked around that nap schedule as best as we could. We decided we were finally ready to attempt a theme park. Legoland had opened recently and we knew that Benjamin’s eyes would bug out of his head and he deserved a day that belonged only to him. He was beyond excited!! He went on every single ride, even the roller coasters! We were incredibly proud of his bravery as he stood in line, not hesitating at anything. He was the happiest he had ever been. All the while, Nate spent his entire day in the stroller, wanting nothing to do with any of the rides; which, worked out perfectly because then we each got some one on one time with Benjamin. In the last 30 minutes of us being there, Nate decided he was ready to try 2 rides. He got out of the stroller and went on 2 rides in the Duplo section. Benjamin was so proud of his little brother!

Nate is silly!

Cool kids!

Back to the sleep….the doctor wanted an update after 2 weeks with the new schedule. By November 17, Nate was averaging 8.5 hours of sleep during a 24 hour period (3 year olds typically average 11.25 hours). He was averaging 6.5 hours straight (3 year olds typically average anywhere from 9.75-11.25 hours). So, we were still a little behind, but he was making progress. On a brighter note, we hit the $17,000 mark in our fundraising efforts for Team Nate the Great and the PLGA! This was the news we needed as we headed into December and the dreaded 4 month scan.

                            “If you always give, you will always have.”

September 2014

apple picking

Before I begin the next chapter of our story, I would like to thank those who have been reading our blog and joining us on our journey. It’s sometimes difficult to open up our lives to potential scrutiny, but it’s been nothing but a positive experience so far. It’s always nice to hear that someone has learned something new from reading our blog or that they have gained a new appreciation for the unknowns that some families go through. I consider our journey only a slightly bumpy one. It’s hard to put into words sometimes how far Nate has come, or even as far as we have come as a family. There are always days that are more difficult than others, but we are starting to enjoy many more happy days than tough ones. A day at a time; that’s all we can do!

September of 2014 was a busy month and full of changes for all of us! We finished off the month of August celebrating our 6th wedding anniversary at Tanglewood listening to Josh Groban. We took my Mom with us as a way to thank her for all of her support over the past year and a half. She absolutely LOVES Josh Groban and it was and still is a priceless memory to have. Nathan finished his time at daycare and at early intervention.  He could not have made the strides he did without these two programs in his life. Daycare allowed him to practice being away from me and lessened his anxiety levels each day. Early intervention, although a slow process for him, allowed him to play with another adult and learning some very important coping strategies when dealing with his anxiety. Although we were all sad to see this part of his life go, we were all excited to see him off to his next challenge: pre-school! It was helpful that he had already been watching Benjamin attend preschool and everyone knew him there. It was a friendly and familiar place.

First day of preschool!

We celebrated Nate’s 3rd birthday twice: once with all of our playgroup families and once with our family. Every birthday celebrated is a little more special now.

Happy 3rd birthday Nate!

Nate continued to learn new things and started taking more chances. He finally took a ride on our utility vehicle and even took some swings with a golf club. Benjamin was very happy for Nate about both of them! He began to love washing his hands (almost to obsession) and started jumping off of things (a normal thing for most 3 year old boys, but huge for Nate!). 

Let the jumping begin!

first ride on the ranger

His sleep patterns were not getting any better and we were starting to lose our minds! Toward the end of September, we had two scary events. The first was when Nate fell 5 feet backwards off of the playscape at the park. It still takes my breath away when thinking about it. It’s one of those things that, as a Mom, happens in slow motion and no matter how quickly you move, you can’t stop it from happening. He landed directly on his back and the back of his head. Thankfully, he calmed down within 15 minutes and was ok. I put in a call to his pediatrician regardless. They didn’t want to see him unless he was showing signs of a concussion or something else, which he never showed so we made it through that one unscathed. Two days later, he fell off the couch and began to complain his arm was hurting. We decided to make a quick run into the doctor, just to be sure it wasn’t broken. Thankfully, it wasn’t and they didn’t make us to an X-Ray either! We finished off the month with a successful post-surgical follow up trip to the ENT. His hearing was good and the tubes were in place.





We also decided to design gray bracelets in honor of Nate. On one side, they said, "Nate the Great," and on the other side, "Strength Courage Hope." We hope to start raising some funds for pediatric brain tumor research. We raised $600 in the first two weeks of ordering the bracelets. Simply amazing!

a beautiful picture given to us by our cousins who are all wearing Nate the Great bracelets

 
“Life doesn’t get easier or more forgiving; we get stronger and more resilient.” - Dr. Steve Maraboli