Tuesday, October 25, 2011

Neurosurgery Follow-up

Today we had a neurosurgery follow-up just to be sure everything is still well with Marley's shunt. Vincent was miraculously well-behaved during the almost hour long time that we sat in the waiting room!! There was an 8-year-old little boy there to keep him company. People go to neurosurgery for all sorts of reasons, and  congenital hydrocephalus was not one of those reasons that I would assume the 8-year-old was there for, so when I started talking to his mother and she told me he had hydrocephalus discovered at 16 weeks gestation, I was a little surprised!

When I walked up to the seating area, this little boy was reading a children's book aloud. Amazing. I got to talk to his mother for a little over an hour, and learned more about their experiences, including the onset of epilepsy. When I asked her how old he was when that happened, she told me, "You don't want to know," considering it onset close to the age Marley is now. If it does happen to Marley, I will just do my best to handle it with as much grace as my friends have shown me, with unwavering faith. Until then, I'll (do my best) to stick with some of the best advice I've ever been given as a child: "Don't worry about it until it happens."

Anxiety is a tricky thing. I might sound crazy, but I feel like I'm constantly at war with myself in trying to control my thoughts and not let all of the "what ifs" creep in and destroy my day. I'm truly doing my best to take control of my own mind and choose to be happy, whether my body feels like it wants to be or not. This really has nothing to do with what's going on in my life, because I really have too much to be thankful for to let anything get me down. I know it's possible to do and I will!

The actual appointment went great. Marley has been really bashful to people she doesn't recognize straight away, and usually buries her head into my chest, but she reached right out to her doctor. I thought it was so sweet! The relationship with our neuro has changed quite a bit. As he compared Marley's MRI from December to her latest CT scan last month, he said "This is a drastic improvement. I'd say she has six months to a year for more brain growth until we need to turn the flow on her shunt down."

What wonderful news, all the way around! We won't need to be seen again (hopefully!) for three more months. He even gave Vincent a toy car when we left... how sweet!

I am overflowing with thankfulness for how the last 11 months have played out. It almost doesn't seem like reality. I don't want anyone to think I'm skipping along, rosy cheeks and all smiles as if I'm oblivious to some of the experiences others are facing. I'm praying for you and your little ones every day, and I wish I could take it all away from them myself, if only I could.

Wednesday, October 5, 2011

Playground Infatuation

Today after our O.T. sessions we headed to a beautiful little park close to where my husband works. It's just beautiful. It's very small, but it has two playsets with slides, monkey bars, and also there's a set of swings, which is encircled by a paved jogging/walking track. On one of the play sets there are bells that have different tones when you smack them with bare hands. Vincent and I found that the bells are really loud if you smack them with a stick mallet! Beyond this playground, is a beautiful view of open vegetation followed by forest. The breeze brought loads of little dandelion fluffs floating whimsically into the air. Today was such a beautiful day. The breeze made it a perfect day to go. Vincent and I found two empty snail shells. Poor guys! But, he thought they were pretty interesting to look at. Airplanes sometimes circle over the park and I don't just mean way, way up high. We could see lots of details on the planes as they went overhead. My little boy is in all out train/airplane phase. He waved excitedly to each airplane that flew nearby. We will need to invest in a box of sidewalk chalk for my little artist; as there were masterpieces left behind already. What a great idea!

Vincent climbed on the play sets and slid down the slides. He attempted the monkey bars by himself, but screamed as he just hung there. He's still a bit too small for those yet, but nice try! He absolutely loved running around with three other little boys. I pushed him on the swings for about an entire 20 minutes. Swinging is amazing for his vestibular awareness! It's a sensory thing. I think, perhaps, it was the little girl who was being pushed by her mommy on the swing next to him that kept him so attentive. Every time the two would swing in sync, he looked over to her and giggled and made kissing noises. Sheesh. He's only two and a half! I may add that after swinging time was over, he tried to follow her around and she was not having it! Poor little guy, already being rejected by the ladies.

 And yes, that is a messy cheesy chips face.