December 21 - Blythedale - Day 32

I can’t believe that it’s winter and Christmas is upon us. It doesn’t seem too long ago that we were at the park and putting Chloe in the swing for the first time. I cried the other day when Olivia pointed to the park we went to just two weeks before we came to the hospital. It’s a park we would go to on Saturday morning when we weren’t out by my parents. I remember sharing a popsicle with Olivia and putting the two girls side by side on the swing set and taking pictures.

We have tried our best to get ready for the holidays. I took the past few days to be home with Olivia. It was my first time home in three weeks. It felt different. It was nice to be in the apartment but Olivia and I both felt something was off. We kept to her routine – I took her to school and went to her Christmas party as I’ve always done. She was so happy with her friends and jumping around. That night I had a surprise waiting for her – a Christmas tree and a homecooked meal (I haven’t really cooked since October). Olivia and I put on Christmas music, decorated the tree, and then ate dinner by candlelight. It was a really nice moment but sad at the same time. There was a quiet feeling to Olivia that night. There was a quiet feeling to me as well. So, we treated ourselves to some cupcakes and snuggled a bit on the couch.

While I was at home with Olivia, Reth and our team of doctors, social workers and therapists were working hard to make a Christmas wish come true. We had said since the beginning of our time at Blythedale that, if at all possible, we wanted to be home for Christmas. Chloe has been showing improvement throughout and though she can stay longer, our team has pushed for our discharge date. We are all cautiously optimistic but our plan seems to be headed in the right direction. With the great help of our wonderful physical therapist who has been there for each and every one of us throughout our stay, social work was able to put through paper work to approve 5x/week therapies in our home. Chloe will qualify for Early Intervention services through NY State but it will take about 30 days to process her evaluations. In the interim, Visiting Nurses Service will provide her therapies. We will have a family meeting tomorrow to talk about our discharge plan and finalize our stay. Already we have received our medical supplies to have Chloe at home and will make arrangements to come back and have her fitted for a brand new stroller in the next week. A lot is riding on the paperwork and this meeting tomorrow and we hope and pray we hear good news.

We will keep you posted over the next couple days but our tentative date of discharge will be Christmas Eve. Chloe has had a nice few days with Reth. He was able to spend some time with her during her therapy sessions and see how far she has come. I, too, saw a different baby girl after being away for a few days. Chloe is much more alert these days and she is soothed more easily. Still, she does not enjoy being moved and being repositioned but she is easily calmed and more willing to engage. She has gained much more head control which we notice when she sits upright in her stroller or chair, or even when we hold her in our arms. Her sleeping pattern has also changed a bit for the better. We decided to give her a small dose of Melatonin to help her with her sleep cycles and she has been much easier at night. Also, we have brought her Phenobarbital dose down a bit more since her blood levels show that her body is reacting well to the medicine changes. We have pushed Chloe and ourselves to make it to Christmas and though her stay can be longer, we feel that we have given her the greatest start and now we need to bring her home and continue her rehab as a family and rebuild our life together.

We hope and pray that our Christmas wish will come true.

Much love and thanks,

Michelle, Reth, Olivia and Chloe