Maddie’s new crib was delivered Friday night. The guy that made it for us drove it all the way here (from Pittsburgh!) and showed us how to put it together. It is even prettier than we imagined, and though it took a bit longer than expected, we are extremely happy with the finished product. It should drastically improve some aspects of our sleeping situation.
Obviously, having a crib alone will not stop the constant cycling of her sleep cycle. But we are actually making a med change right now to see if we can improve things on that front too. But the main benefit of the bed is that she will no longer sleep in our bed. I actually have enjoyed it, except that Brandon cannot really sleep with us because his sleep cycle (necessary for going to work daily) doesn’t mesh with Maddie’s. It is also pretty stressful to constantly worry that she will fall over me out of bed all night. I don’t really sleep that deeply because of that fear. To know she will be safe will be a huge relief. We have already tried it, and she definitely liked it. But it will take some getting used to on my part. I am so used to being able to feel her have seizures all night because of the vibration in the bed. Now I am worried I’m going to watching the video monitor constantly. But for the most part, she cries out if she has a big seizure. The smaller ones that wake me up don’t even always wake her. So it is probably okay that I not have to wake up 30 times at night (or day, whenever she is sleeping).
The detailed woodwork of the crib is so beautiful that I hate to cover it up, but we bought it so that we could have somewhere truly safe for her. I finished padding it midday yesterday. Who knew I was so domestic? Brandon found my sewing machine in the attic and I went to work. And I am proud to say that the whole thing, bed, mattress, and padding, cost less than half what it would have if we had ordered a seizure proof bed from a medical equipment company. And then it would have looked like medical equipment, too. So we are super happy with the decision we made.
And most importantly, we have some people to thank for this amazing gift. I want to say a special thanks to my dad and my uncle Clyde. Both have been extremely generous in helping us purchase the crib. My uncle Clyde has been extremely selfless in contributing money to Maddie’s savings. For his last two birthdays, rather than accepting gifts for himself, he has asked his family and friends to give money to Madeline. It means so much to us that he would do such a thing, and that the incredible people in his (and our) family have contributed so generously. I hope they all know how much we appreciate their love and kindness. Thanks so much!
I plan to try to post on here a few more times this month. I have some new pics from the beach from the last month and I want to remind folks that September is Childhood Cancer Awareness month. In my mind, there is no better cause.
Love to everyone,
Liz, Brandon, and Maddie