March 2014

Surprisingly enough, the month started off with no issues! Nate was still waking up several times throughout the night, but sleeping until 5:30 or so. I'll take 5:30 any day of the week!  We were preparing to head back to Florida for vacation before Nate's surgery in the middle of the month. While in Florida, we were able to enjoy the pool and all of the sunshine.

the boys walking around Sea World

having fun on the slide

Ben sharing his popcorn

the 4 of us

It was a lovely time until we realized that we forgot our car and home keys while already on our way to the airport! We didn't have time to turn around (and we actually considered crossing the median!). We made some quick phone calls to Stephen's brother and to the company that takes care of our home when we're not there. He was going to get the keys as soon as possible and overnight them to us while Stephen's brother was going to get our extra set of keys and then drop them off to us at the airport. It was some travel time for him, and we were extremely thankful that we were able to come up with a plan that worked for everyone. One little thing that caused a lot of unnecessary stress for us before even getting to the airport!

Nate's constipation issues were also continuing; we had been on Miralax on and off for almost 2 months. I hated having to give it to him daily, but it seemed to be the only thing that helped since he was a non-juice drinker.

The day of Nate's surgery finally arrived (March 19th); we were nervous as we headed into the same surgical suite that his second brain surgery was done in. It's amazing what feelings can come flooding back when just seeing certain things. I'm guessing that may lighten as he gets older, but probably never fully go away.

poor boy was not happy about being in the hospital again

We love his otylaryngologist that performed the surgery! She is wonderful to work with and understands his anxiety around doctors. She was able to remove the adenoids and insert the tubes without an issue. She did say, however, that she had to use the largest suction to remove all of the gunk that was filling his ears. That sounds like fun! Also, his adenoids will blocking 60% of his airway so we were really hoping that this would help his sleep pattern.  All in all, we were in and out of Boston in 4 hours! What a productive trip!

Nate seemed to be healing fine after surgery. Two days later, we were scared out of our minds. He began throwing up violently (not a good sign when you have a child with a brain tumor and hydrocephalus!), had a nasty cough, and a 103 temperature. All very scary signs for us. We put a call into the surgeon's office in Boston as well as our own pediatrician. Everyone was really good at calming us down and thankfully, we were told to ride it out unless it got worse. The surgeon wasn't really sure what caused the quick illness other than bad luck. Yeah, bad luck alright.  Our pediatrician was nice enough to call and check on us the next day to make sure things were back to normal. Whatever normal is! :)

Toward the end of the month, the scanxiety started to creep in. Nate's next MRI was scheduled for the first week of April. It was going to be a year since his diagnosis. Many emotions were surrounding this particular MRI. We were ready to hear good news and start extending our time in between MRI's.  I got a phone call on March 27 from the radiology department telling me that the MRI would have to be delayed because of Nate's surgery. I was devastated! We already had to wait and now, the appointment wasn't going to be for another 6 weeks! Anyone that has to wait for these MRI's will understand exactly how I felt. I basically sat on the bottom stair and cried like a baby. I cannot describe in words how it feels to know that there is something in my son's brain, something that will ALWAYS be there; and we don't ever know what it's doing unless we have an MRI.

I threw a pity party for myself for a little bit and then got an idea to make the 6 weeks fly by...