November 2013 - January 2014

Nate & Ben playing with a new toy!

For those of you that are new to our blog, we are currently catching everyone up to speed and this post will get you to January of 2014. We have a long way to go to get to present day, but it's important to us that you know our back story and how we got to where we are today. If you are new, you may want to start from the beginning so you don't feel lost. Thank you for joining us on our journey!

I will never forget the month of November! It started out with me leaving for a bowling tournament in Baltimore. I've left Stephen alone with the boys before, but Nate had a cold and I felt bad for leaving. Stephen assured me everything was going to be okay and I knew it was, but I still felt bad. I arrived in Baltimore and when I went to check in at home, Stephen told me that Nate's cold had gotten worse and he was having trouble breathing. Seriously?? We can't take much more. He called the doctor and a friend who had a son who previously had croup. She told Stephen to take him to the ER immediately. Talk about feeling helpless!! I'm in Baltimore for one of the few times I go and this happens.  They took him right back and gave him a breathing treatment and some oral steroids. He ended up staying there for several hours receiving two more breathing treatments before they felt comfortable letting him go home. He had croup and a double ear infection. Ugh.

It took over a week, but he was finally fever free and I brought him back to the doctor for a follow-up. Sinus infection. Again?? Round #2 of antibiotics were given. I'm just sad for this kid. As if he hasn't been through enough! I was a little nervous as we were getting ready to go back to Florida for vacation and I didn't want to bring him on a plane still being sick. The doctor assured me it was ok and away we went. While we were there, guess what happened? It develops this nasty rash because of the sun exposure while on antibiotics. Damn. He just can't catch a break.  He didn't seem bothered by it, but I called his pediatrician anyway. We were to stop the antibiotics and give him some Benadryl. Fun!

Nate's rash while we were in Florida

We were still able to enjoy ourselves in Florida and spent time with Stephen's brother, sister-in-law, and niece. We were looking forward to the holidays when we got home.

Nate in the water in Florida

Ben & Nate in Florida

We finished off the month of November with a scheduled appointment with the ophthalmologist for Nate. This appointment was NOT fun. He had an absolute meltdown and was inconsolable. I felt terrible for him, but at the same time, wanted to knock out some people that felt the need to stare and roll their eyes. Nothing like being supportive of a parent who's obviously struggling! I wanted to just run out of there, but we had to make sure there wasn't any damage to his optic nerve. Thankfully, we got good news and hightailed it out of there! 

December arrived and we continued to struggle with Nate's sleeping, or lack thereof. He was still waking up multiple times during the night and waking up early in the morning. It's like he's still in the newborn stage! We were averaging about a 4:15 wake up time. We felt like we've tried everything to create a solid "sleep environment" for him: room darkening shades, a sound machine, a night light, a humidifier, essential oils and diffuser. You name it, we've tried it. Ugh! I finally called a sleep consultant. We had the appointment over the phone. She gave us some things to try (tweaking the schedule a bit) and we were on our way. Or so we thought!

Nate & Ben on Christmas

The boys in the snow, Nate hates the cold!

We celebrated Benjamin's 4th birthday right before Christmas. He's a tough kid! It's not easy being the sibling of a brother who needs (and gets) a lot of attention. Ben is a soft-spoken little boy who is very understanding and tolerant of his brother's needs. It was nice to have an entire day all about Ben!

Ben was so excited about his Superman cake

Ben with his first bike!

The boys on Christmas morning

Thankful for hugs

2014 arrived and we celebrated all of our blessings, but quickly became anxious for Nate's next MRI looming on January 8th. Nate started out the year with yet another ear infection. He seems to get sick the week before every MRI. It's like clockwork! We arrived in Boston and got through the very stressful day. Those days are so long! We leave our house at 4:30 am to arrive in time for the 7:15 check-in. Nate isn't allowed to eat or drink as he is sedated for the 90 minute MRI. That is the tough part....trying to explain to a 2 1/2 year old that they can't have their morning milk. No fun!  We got the news we were looking for: Stable! We were also referred to the ENT to further look into his ear and sinus issues. That appointment came and we decided to have surgery to remove his adenoids and place tubes in his ears. We were really hoping that this would help not only with the infections, but also his sleep. Could this be the answer?? Unfortunately, we had to wait until March to find out.

waiting to be taken back for his MRI

Nate in recovery

The months in between scans seem to fly by! We kept busy with gym and music classes and school for Ben. Nate was doing well with daycare one morning a week and early intervention appointments. Ms. Laurie was a Godsend to our family. Nate loves her and looks forward to his playtime with her. She was constantly working with his anxiety and his vocabulary. She was always offering advice to me and even gave us some real medical equipment to use with Nate to help ease the anxiety that just hearing the word doctor gave him.

Nate & his stethoscope

Mommy & Ben breakfast date

It certainly takes a village to raise your children!

August-October 2013

Ben is the best big brother!

For those of you that are new to our blog, we are currently catching everyone up to speed and this post will get you to October of 2013. We have a long way to go to get to present day, but it's important to us that you know our back story and how we got to where we are today. If you are new, you may want to start from the beginning so you don't feel lost. Thank you for joining us on our journey!

August threw us some curveballs, but we continued to navigate and push through. Early on in the month, Nate had to go to the doctor for an infected ingrown toenail. He is the kid that gets all the weird stuff! These random trips to the doctor, in between all the trips to Boston, really affected his separation anxiety and have pushed him into another level of overall anxiety around anything doctor-related. He starts screaming as soon as he sees the parking garage. It's just sad. There's no comforting him, no soothing him, no bringing him down a level. He screams from the moment we walk in the building until the moment we leave; even if we're just dropping off paperwork. Sometimes I think someone will call the police or DCF for fear I am kidnapping him. This poor kid! 

His sleep has not improved at all which in turn affects his entire day following the poor sleep. He reacts to every thing and everyone; not in a nice way either. We struggle to bring him in public, but continue to do so hoping the exposure will help and decrease the episodes of fear and screaming. Because of this daily struggle, we decide to have him evaluated by the Pediatric Development Center, our local birth-3 program. I tried to prepare them for what they may see, but when it comes to Nate, one can never be truly prepared. 

As I write this, I am looking back at the notes from the initial evaluation. It makes me sad to read, but so happy to see how far he's come! Here are some quotes from their clinical observation:

"When Nathan saw the three unfamiliar evaluators, he began to cry loudly..."
"It took some time to lure him over to engage...he would participate for short periods before running off and crying again..." "difficult to assess" 
"he began crying when his mother moved from the couch to the floor" 
"sight of small bag of stringing beads sent him running and screaming into the kitchen" "His reaction to strangers is intense and his difficulty in self regulating his emotions and behavior is concerning." "During the evaluation, Nathan did not attain any equilibrium until almost two hours had passed." "Given the medical trauma that Nathan has endured, his fearfulness around strangers is understandable. What is concerning is the intensity and duration of this behavior." 

He qualified for services, thankfully! We would begin one hour of play therapy once a week toward the end of September. And, it was suggested that we think about starting him in daycare one morning a week to help ease the separation anxiety. Thankfully, we were able to find a wonderful home daycare that was willing to start us only one morning.

September of 2013 started off with a bang! I was in Baltimore for a pro tour event in which I won my 16th star. For those of you that are unfamiliar with duckpin bowling, please check out www.wndatour.com! It was a very emotional win for me as it was the first one I won since my Dad passed away. 

Shortly after returning from Baltimore, we celebrated Nathan's 2nd birthday. What a milestone! It was so special to be able to celebrate with our family and friends, as it was his first birthday after his diagnosis. For those of you in the brain tumor world, I know you can relate!

Happy birthday cupcakes!

Ben helping open presents

It's not always pretty!

sweet hugs from the birthday boy!

Mom's hair is always a lifesaver

We continued through September, struggling with Nathan's continual screeching and lack of consistent sleep. There seemed to be no reason for the screeching; his vocabulary was still small and there was no other way for him to communicate other than to screech. This was something that we would be working on in therapy. The lack of sleep was a whole other story. His wake up times were anywhere from 1 am (no joke!) to 4:30ish. Sometimes he made it past 5 (and even past 6 on some mornings...I can count those on 2 hands, maybe even 1!). Despite some really tough days throughout the month, we were able to end it on a good note which was nice as we were looking at another follow-up in Boston.

Nate's next follow-up was early in October. His sedated MRI went well and we are so thankful that he does well with anesthesia. He always wakes up ready to go and ready to play. We were able to connect with 5 different doctors at this appointment and got some advice about his sleep issues. Our next set of appointments were set for January. Until then, we watch and live!

When we got home, we were ready to "reset" his sleep cycle. Sounds like fun, right? Ha ha!  He made some improvements early on, but it evened out and remained the same for about 2 weeks and then went backwards toward the end of the month. Ugh! He was continuing to wake up multiple times in the night and then getting up for the day before 5 (most days it was before 4). We also had his 2 year well check with his pediatrician which was absolute torture. 

We finished off the month doing all things fall related...playing in the leaves, apple and pumpkin picking, and decorating for Halloween. The boys were still hesitant about dressing up, but finally did. We did not go trick or treating though. Maybe next year!

can't get enough of each other

the possibilities are endless!

playing in the leaves

me and the boys

pumpkin time

best buddies

feeding the animals

smooches for big brother

Halloween! Nate was a doctor & Ben was a skeleton