December 13 - Blythedale - Day 24

It was an uneventful week for Chloe. I know we can't always expect to have an upward slope in our road but we kind of tapered a bit as Chloe began to show signs of her sleep schedule changing again. Most nights this past week, she has been awake until after midnight and would sleep during the first part of the day. This obviously posed a challenge for her therapists in that she was not alert enough to participate in their tasks and Chloe would become agitated by being positioned and moved around when all she wanted to do was rest. In truth, it was a hard week to witness. I know there will be ups and downs but she fussed, cried, fought and slept through many of the things we saw her do days before.

It is a battle. Some say she has been through a traumatic experience and her brain and body need to rest while others say that we need to wake her every so often so that she begins to anticipate the routine of her day. Both sides are right but where is the medium? One of the biggest signs we need to watch for is her sleepiness as this would indicate possible increase of brain fluid and pressure or her shunt not working properly. It's so hard to know. I think back to when the girls were newborns and how they would sleep most of the day and only be awake for a couple hours at a time, if that. That seems to be where we are. We are trying our best to follow Chloe's lead while trying to nudge her into some sort of day and night routine. We are back to swaddling her at night which she always loved anyway so we hope that in the next few days we will take another turn and continue on our climb.

Don't get me wrong, the whole week was not completely void of any positive events. Chloe has shown us that she has a bit more head control. She has been having a lot of tummy time since we have been here. Using a big yoga ball, Chloe practiced bringing over and controlling her body as we helped her roll from back to belly to back. She would cry because it was hard work but she did it over and over again. She brought her head up, her shoulder and arm over, and cleared her airway. Being on the big ball helps to take the pressure of gravity pulling down Chloe's head so with just that bit of help she is able to find success. Chloe also sat in a swing later in the week. Though she was asleep for most of this, Chloe sat in her tumbleform on a platform swing and enjoyed the motion of being slightly pushed forward/backward and side to side. We didn't use any towels to prop her head; she did it on her own. When she fell into a deeper sleep, her head would fall slightly to the left, but most times she would find her midline on her own. A great sign was when she even brought her hands together independently.

We pray and hope for more moments like this during the coming week - for a well rested baby at night and a more wakeful and playful baby during the day.

Christmas is coming soon, today is her 10 month mark and I pray and beg with all I have left in me to be witness to... well, I don't want to say miracle because I know that I've already been granted that - I have Chloe next to me. But what I would do to bring her home... I even take a step back - what I would do to see her smile and beam and be happy. It has been a hard week to hear her cries and whines. I go back to the days when I always prayed that I have a healthy and happy baby. Healthy we are working on and have a plan but I have not seen my little girl smile for over two months and, well... it hurts. I look into her eyes when I hold her or as she lays in front of me as we play and I can see her eyes shine but I wait in heartache to see her beautiful, big smile come back to me to let me know things will be okay.

A lot to ask... I know. She has been through a lot and has shown such improvement and believe me, I could not be more proud or feel more blessed for what she has overcome but like I said, it just... hurts.