March & April 2015

March of this year started out well. We took our annual March trip to Florida and were able to share some of the trip with Stephen's brother, sister in law, and niece, which always makes for a fun trip. We spent time at the pool, at Lego Land (Ben's favorite place in the world), and went on a new adventure to a drive through safari which the boys absolutely loved. Nate, behaviorally, did well on this trip...sleep patterns were the same, and he started to refuse peanut butter sandwiches, which was one of his staples. This was a little disheartening as he eats approximately 10 different foods so taking that out of the diet was tough to watch. Looking back, the one thing that sticks out in my mind was driving to the Vero Beach outlets. It started out like any other morning. We were almost there and I heard a funny noise so I turned around to look in the back seat and see Nate throw up all over himself. He never said he didn't feel well nor would I have ever thought that he would get sick. So, we pulled in and I went straight into Carter's to get a new outfit for him. Poor kid! He didn't get sick the rest of the day so we just kept a watchful eye on him and he seemed fine. Oh, the thoughts that go through your head when your kid with a brain tumor and hydrocephalus throws up randomly.

Nate decided he wanted in on the action too!

Safari waterpark

  

Nate actually wanted to go on rides this time! Yeah!

The rest of March was full of only good things! A friend approached me to do a fundraiser for Team Nate the Great (PLGA Foundation) and I was beyond flattered. Through her sales, she ended up raising a good amount of money that we were so proud of! We also were able to conduct a paint night fundraiser at a local elementary school. Stephen's cousin came to us in February and wanted to run this fundraiser in conjunction with her school's yearlong compassion theme and raise money for Team Nate the Great. She had such lofty goals and did not disappoint. Through the help of friends and family, local businesses donated raffle prizes, and we were able to raise over $2500 for Team Nate the Great and the PLGA. It was an absolutely amazing night and one that I'll never forget.

our sign

We had just under 100 painters!

To top off our good news, my Mom was recognized by her local church and the archbishop of CT with the St. Joseph's medal of appreciation. I couldn't be more proud of someone in my entire life. If you have met her and spent any time with her, consider yourself lucky. She is beyond special.

the medals

April of this year was interesting. After a brief trip to Connecticut with the boys while Stephen was in Florida, I woke up to Benjamin in my room telling me his arm hurt. I quickly looked and found a large blister on one of his forearms. It was the strangest thing I've ever seen! Then, as I was putting his shirt back on, he said his other arm hurt too. I look, and there was another blister, except this one was bigger! What the heck! The blisters looked like something you would see after someone was burned, except that he was sleeping when it happened. I texted some pictures to my sister and Mom; they thought it was weird too. I ended up just covering them up so they wouldn't pop until the pediatrician's office opened. They took him right in and decided to pop them and test the fluid since he hadn't been near anything hot that would've caused them. The tests came back empty and the doctor thought it was just a one time thing. If it's a strange and weird health issue, it happens in our family!

blister #1

blister #2

tough guy!

The anniversary of Nate's diagnosis (4/12/13) came and went. It didn't hit me as hard as it did for the first one. I feel like he's doing well, looks good, and has come so far that it was something to celebrate, not something to be sad over.

I was thinking it might be time to start potty training. If I've learned anything about Nate, is that he does things on his own time, in his own way. I knew it was going to be tough, but man, this kid is stubborn! :)  The beginning of potty training was interesting, to say the least....he wasn't going to be one of those "3 day" kids, that's for sure.

Easter egg decorating

Nate thinks he can drive the ranger

silly boys!

A new year...2015

I finally made it to updating 2015....thank God! I never thought I'd get there with everything that has gone on (in real time!).  January of this year started off with a bang...and not a good one. We were still dealing with Nate's sleep issues, simply a reoccurring theme in our life. Some days I let it get to me, most days, I'm just used to it. I'll take a full night's sleep when I get one....once a month, maybe???

I woke up on January 13 and for the first time in my life, I felt like I was unable to breathe, and unable to take a full breath. It was scary and I had no idea what was happening. The feeling went away and I attempted to go on with my day. Not a smart move. After about an hour, I was able to drive myself to the doctor. As I was sitting in the waiting room, I started to feel weak so I got up to get a cup of water. Again, feeling weak and queasy, I walked into the bathroom and fell to the floor. I don't think I passed out, but I definitely walked in there and found myself on the floor. Not fun. A nurse walked by and realized I was sitting on the floor. A little embarrassing, but at least she found me conscious, right? :)

When I was able to stand up, I was walked to an exam room. The doctor went through all the normal tests and decided I had walking pneumonia. Fun! I called my Mom on the drive home and asked if she could come up and help out with the boys (thankfully, she lives less than 2 hours away). She was on her way before we hung up. What a lifesaver! I got home and crawled into bed. Little did I know that this wouldn't be the most exciting part of the day.

After my Mom got to our house, Nate decided to trip, fall, and slam his chin into a step. It was decided that it needed stitches so I got dressed and went with Stephen and Nate to the ER since we all know how much Nate loves going to the doctor! My Mom stayed back with Ben, who at this point, was feeling feverish. Nate did surprisingly well at the ER. They took us back quickly and we decided that although he did need stitches, glue would do the job just as well. It wasn't worth trying to hold him down to numb his chin before the stitches went in. I'll apologize to him for the scar later. :)

Thankfully, all the drama from the middle of January subsided within a few days and we were all feeling back to normal soon. We were, however, extremely disappointed to have missed an event in Boston that we were invited to because of the fundraising that we were taking part in for the Pediatric Low Grade Astrocytoma Foundation (PLGA). It was the Annual Scientific Advisory Board Meeting and Family Poster night presented by Nate's doctor and the researchers at Dana Farber. We had been looking forward to it since we received the invitation and were bummed we couldn't go. Hopefully, next year!

February wasn't as eventful as January, thankfully! I was finally able to take a trip with my girls from Baltimore and went away for a few days. The four of us had been talking about this trip for years and I had never felt comfortable leaving Nate. The time finally arrived to go and what happens? A snowstorm, of course. Big surprise. Thankfully, my flight down was still able to take off and I was able to meet them in Baltimore before heading off to Florida. The trip was exactly what I needed. The flight home was just as interesting as my original flight was cancelled due to another impending storm. Thankfully, I was able to get on another flight. After being delayed for several hours in Baltimore (and 2 books later), I finally got home.

On February 13th, Nate woke up and yelled for me which is pretty typical of him. I walk in the room, he sits up, and throws up. Not good. Any parent of a child with a brain tumor and/or hydrocephalus knows what this can mean. It's hard not to let your heart drop into your stomach and think the worst. I clean him up, but he continues to vomit. While I'm holding back tears because I know what this can potentially mean (for those of you that may not know, vomiting is the first sign of hydrocephalus; for Nate, this means that his ETV can close and is a life threatening situation). He finally stops and I get him ready to hang on the couch all day. He is definitely not himself so I put a call into the pediatrician. At this point, so many thoughts are running through my head. Do I just call his pediatrician? Do I call Boston? His neurosurgeon? It's so difficult to remind myself that this could just be a stomach bug. This could simply be a normal kid thing.

The pediatrician wanted to see him because of the vomiting. I was happy to bring him in. I mean, I walked through all of the typical neurological tests that I knew of, but it would be nice for a doctor to do it too. After seeing him and doing a strep test (which he had!), the doctor felt comfortable enough to say that it was simply strep and that he didn't think we needed to go to Boston and that he would send his notes over to them. Thank God. I love every single doctor that we have and feel so thankful that they know Nate and understand our situation.

After those 2 months starting off 2015, I knew it had to get better! And, it did.