In reflecting on the events of this past January, I feel like it was emotional and worry-filled month. Thankfully, it was nothing too life-altering, but the worry and anxiety that comes with post-surgery things with Nate can affect so many parts of this girl's heart. His adenoid removal surgery was on December 31. In the immediate hours post-surgery, he was doing fantastic. The ride home from Boston was smooth, he ate ice cream as soon as we walked in the door, and was in happy spirits. Day two was very different. He complained that his head hurt. He NEVER complains his head hurts. He seemed out of it and simply "off." This started my internal struggle of when to call doctors and when to just wait it out. This is never an easy decision for me, but I always try to err on the side of caution. Thankfully, our pediatrician's office is very patient with me and understands my worry. When a child with a brain tumor and hydrocephalus complains that their head hurts, it's very difficult not to go to a dark place. The likelihood of something going wrong with his head is slim to none (at least that's what I'm going with!), but there's always a chance of his ETV closing up and him needing immediate medical care and emergency surgery.
As the days went on, his head pain seemed to subside, but he continued to not be himself. It ended up taking almost the entire month for him to return to his normal "Nate" self. One of the worst things to deal with was the bad-breath that occurs from removing the adenoids. If you've never been around it, be grateful; it's definitely one of the worst smells ever. Thankfully, that went away too.
One of the best things to happen in January was Nate wanting to begin to write and color. He wanted to write his name on everything and color anything that was handed to him. I was beginning to worry that he would never want to do it, let alone get excited about it! I longed for the day that he would want to sit with me at the counter and color our hearts out. Now, it's an everyday event for us and I love every minute of it.
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| writing on the paper at the doctor's office |
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| practicing his name |
I also bowled in and won a tournament in Connecticut that was held in honor of my dear friend, Theresa. She died way too young and is missed terribly. She would've loved Nate and I know she has a hand in him loving the color purple. :)
The month ended on a difficult note. Nate had an neuro-opthamologist appointment in Waltham. It was supposed to be his "last" appointment of his cycle of appointments related to his tumor and he was supposed to be given a year break from it all. I went into the appointment with such high hopes. I don't know why I do that to myself! The initial exam was done by a nurse. She had never met Nate before so it was nice to get a new set of eyes to look at him (ignore the pun!). She took out a camera to take a video of his eyes which started to get me a little worried because no one had ever done that before. She explained that she noticed something a little "off" and wanted to catch it on video in case it was something new and something the doctor hadn't seen before. The doctor finally came in and did her exam on his as well. I love this doctor and have since day one. She is fantastic with Nate and is very calming. She explained that she saw what the nurse saw too and said she didn't remember him doing it before. She noticed a "fluttering" with his left eye. She told me that it could be the result of pressure building in his head, tumor growth, or just something quirky that he does without thinking. I could feel myself getting upset, but I was able to hold it together in the office. She was leaning more toward it being a quirk and said that she felt comfortable with not scheduling an emergency MRI and just seeing him again in 6 months. Although her outlook made me feel a little bit better, my insides were ready to explode. I knew I had to get out of there because I was going to lose it.
He and I walked downstairs and of course, he wanted to watch the big ball machine that is in the hospital lobby. I sat off to the side and let him do his thing. Ahh, to watch him and know that he has no idea how serious things can get with him and he simply lives the only way he knows how to: inquisitively, full of curiosity, ignorance and bliss. I lost it; right there in the lobby. Uncontrollable tears streaming down my face. I'm sure I'm the ugliest crier out there, but I had no control over it. I just thought he would get a good chunk of time off from this. Nope, just not yet. As I start to look for some tissues, I look up and see his neurologist walk in. I didn't think she would even see me, nor even recognize me in the sea of people. She walked right over, sat down, and asked me what happened. She glanced over to him to make sure he was okay too. She took the time to listen to the concerns. Ironically enough, she was headed up to see the same doctor for her own daughter and said that she would tell her that she saw me in the lobby and figure out what the best next step was for him. I can never express my gratitude that I have to be surrounded by some of the best and most supportive doctors in the country. Nate is one lucky kid.
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| Candyland while waiting for the doctor |
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| exam at the eye doctor |
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| the fascinating ball machine! |
"In life, you will realize there is a role for everyone you meet. Some will test you, some will use you, some will love you, and some will teach you. But the ones who are truly important are the ones who bring out the best in you. They are the rare and amazing people who remind you why it's worth it." -Unknown
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| Raja (my 1st ever cat who died 1/6/2016) |
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| Ben playing hockey! |
