"Whether we are filled with joy or grief, our angels are close to us, speaking to our hearts of God's love."

Wednesday, March 11, 2015

March 11, 2015

My baby is 5 today. It’s amazing how quickly half a decade can go by like the blink of an eye. The progress Ben’s made in the past year has been slow, but it’s there. What may seem so insignificant to some people, can be huge to us. He’s holding his head up for longer periods of time, taking steps if someone is holding him under the armpits, understanding more and more words, and eating by mouth! He’s not a big fan of meat so I call him my little vegetarian. Some of his favorite foods are soy nut butter (he’s still allergic to peanuts) blended with banana, avocado, sweet potato, carrot souffle, pasta, yogurt, and pudding. We basically blend up whatever we can and let him try it. For the most part, he’s been pretty receptive. He’ll never eat enough for us to get rid of the tube, but I’m ok with that. I once hated that tube, but now I don’t think I’ll ever want to get rid of it. It’s become like a security blanket for us.

Our biggest medical issues have been controlling Ben’s seizures, and dealing with the tightness in his hamstrings and ankles. He’s had Botox treatments a few times now (twice in the hamstrings and he’ll be getting his second round in his ankles this month). Has it helped? Maybe. We can see more range of motion in his ankles, but I’m not sure it’s helped his hamstrings as much. I don’t like these treatments at all, but if we can postpone surgery we’re willing to keep doing it. 

This winter has been ridiculously long, but one thing I’m grateful for are the potholes and frost heaves we have all over the place. You’re probably thinking has this girl finally gone mad??? What is she thinking!!! Well, Ben LOVES driving over what we refer to as the “bumps”... especially the big ones! I’m sure the van will be in the shop soon, but I’ll do anything to see Ben laugh to the point of shaking.

One of the major highlights of this past year was our Make a Wish trip to Disney. It was absolutely amazing. Definitely the trip of a lifetime. I wish we could do it all over again! Seeing the joy on both of our kids faces was priceless.


I could go on and on, but it’s time for me to cut myself a big chunk of cake. Good night all!