October 8, 2015
This week started with a flood of emotion in anticipation of
today. It’s funny how your
body/brain remembers or senses such life changing events. I woke up Monday morning missing Chloe
terribly and felt sad and flashed through so many memories, good and bad, of
her being healthy and sick. After
some time, I took a breath and pushed through as Reth and I talked about what
to share with all of you and realized how well she has been doing this past
year.
Chloe has grown so tall and long recently. It’s amazing to see her stretched out
on her bed with her long legs.
Those who cared for her at the time of her illness will remember
how chunky she was, but now she is long and lean. She had lost a lot of weight earlier last year during these
growth spurts but we are happy to say that she is back on track and gaining
weight well. Chloe has also been
doing well with wearing her cute glasses (for her Strabismus) that make her
look so sophisticated and smart.
Reth and I fought the idea of glasses for so long because we thought
they would bother her but she enjoys wearing them and is SO much more aware of
the people and objects around her.
Every therapist, nurse, and doctor is so happy with her attentiveness. Chloe is also wearing her Cochlear
Implant more and more!! Therapists
have worked so hard to place the implant and find different ways to make the
magnet stick. With some helpful
braiding of her hair, the staff has learned to place it properly and Chloe has
been more welcoming to the idea of someone touching her face and head to place these
helpful tools.
Chloe continues to attend school at St. Mary’s. Her teacher, Lori, is one of her best
advocates!! We are so lucky to have her.
She is kind and genuinely cares for Chloe. She has called on so many occasions to tell us about certain
seizures and has fought Chloe’s staff to make them aware of the growing issue
of her seizures and we are so thankful.
Reth and I have only witnessed a few of these bigger seizures and they
are scary for us and for Chloe!
Lori had brought them to my attention initially so when I first saw one
occur, I knew exactly what she had reported. Chloe’s seizures are a difficult thing to report and observe
as they can sometimes be so short and quick, or they can look like she is
staring off, or they can be big, clumsy and scary. Her teacher is with her most of the day and has really
learned to watch for them. Along
with Chloe’s nursing staff who spend time with her in her room, we have been
able to put together a picture of what issues need to be addressed.
The biggest change this past 6 months has been placing Chloe
back on the Ketogenic Diet to help with her seizure activity. As bigger seizures began to emerge, we
have been pushing to find other solutions to help her brain heal. Unfortunately, we have exhausted most
approved medications and need to find a solution that can be more long
term. We had tried the Ketogenic
Diet once before without much success but Chloe was home at the time and I did
not have a reliable nutritionist or nurse to help. Both St. Mary’s and Cornell have excellent nutritionists
that work very closely with each other and our neurology team. So far, Chloe has tolerated the diet
well and has shown some improvement.
She is more alert and aware since changing her formula and we have not
heard as many reports of bigger seizures. She continues to enjoy water therapy and exercising in the pool and has had several positive sessions with her PT 'walking' and bearing weight on her feet. OT and Speech also report that she is more engaged and alert as she maintains stronger head control and is more cooperative during the activities. Her whole team has worked hard and is very happy with the success thus
far.
All in all, it has been a good year moving forward with
Chloe. We still juggle and
struggle to find balance but we are finding peace everyday. Reth and I are so happy to have her
closer as it allows us more time to be together as a family. Olivia and Jackson are so happy to be
able to spend more time with Chloe and have also gotten to know more of her
friend’s on the unit. Olivia
enjoys taking Chloe for walks around her floor unit by herself and whispering
all her secrets to her sweet sister.
Chloe still looks at her in awe, just as she did when she was a
baby. Often times, Olivia will
spend time laying her head next to Chloe and brushing her cheek or tickling her
neck. Jackson loves to kiss Chloe
and still loves to poke her to get her to growl. It is quite endearing!
He is very much aware that she is his older sister and asks to visit her
more and more and has started to express how much he misses her when he does
not see her.
We are so thankful for all of you who keep up with us on
this journey. Thank you for your
many kind thoughts and prayers.
Much love,
Rethier, Michelle, Olivia, Chloe, and Jackson
