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| Smiling in July |
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| Sisters in August |
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| Olivia's Bday - September |
This blog has been a long time coming. We have wanted to share with you how things were going since Chloe’s move to Sunshine. It has been a wonderful place for Chloe. She has two roommates around her age who are pleasant and friendly and the staff treats her like the princess she is. She is dressed nicely everyday and participates in activities with her recreational therapists as well as her rehab team, and she is starting preschool this Fall in the small school that they have on hospital grounds. What is great for us is that it is such a small facility that we have come to know many of the people who surround Chloe and we have been very happy overall. They make such an effort to keep us updated on the activities they do and hang up her assisted art work around her room. Sunshine also has this great pond and fountain that our family loves to walk, run and scooter around. Olivia enjoys running around the adaptive playground playing tag with Chloe in her wheelchair (guess who always seems to win) and likes to race around the pond circle as if it were a track. Chloe loves to be outside so it’s a picture perfect setting. We only wish we were closer.
We are still fighting to get her
into St. Mary’s in Bayside but the waitlist continues and there is no bed in
sight. It is very difficult and
frustrating for us as we miss her everyday and those feelings of heartache
never seem to fade away. Our
little girl is growing and doing amazing things and we feel like we miss those
little moments but are so happy that she has been thriving. Seeing the care that she receives 24
hours a day and the rehab that they offer lets us know that we have made the
best decision for her. Her newest
tricks include rolling from back to belly to back and they have been able to use
her standing system more often and set her up in different types of seating
systems to help her regain some control of her head and trunk. She is also smiling for us a little
more when we come to visit. She
absolutely recognizes us and it’s only seconds until everything falls back into
place when we hold her. Back in
May this year, we decided to go ahead with one more surgery to help Chloe. Since falling ill, she had developed
strabismus in both eyes (lazy eyes).
Throughout the day, we consistently noticed that Chloe brings her eyes
together on her own but her muscles have weakened over these years and you can
see her eyes wander to the side before her brain tells her to bring them center
again. Because she herself is
trying to correct it every time, we felt another surgery would be appropriate. It has been a success so far and we
have noticed great improvement in how she can focus on people and objects and
enjoy her environment a bit more.
There will be more surgeries for her eyes over her lifetime to keep her
muscles tight but we are happy to see her big, brown eyes together as she
smiles and even giggles with us.
At
home, it is still difficult to deal with our living situation. It will always be a transition and
always seems like a juggling act.
We have tried to focus on finding a sense of stability at home for our
own sake and for sweet Olivia. We
were able to take Olivia on vacation with my parents and give her some much
needed family time and have really tried to make time for each other as a
couple. Still, day to day is hard
as I feel stressed between driving the distance to see Chloe and rushing home
to be with Olivia. Reth, as well,
is torn every night as he leaves his long day of work – faced with the decision
to come straight home for dinner or drive up to tuck Chloe into bed. It has been an adjustment and a
struggle as we still grapple with our guilt and insecurities but we still stay
true to our decision and work through it the best we can. There is just such a quiet and
emptiness in our home that we can’t seem to fill. Sometimes the stillness is just so thick, it is hard to
breathe. Even for Olivia, who
always points out that it is too quiet in our house and begs for someone to
play with. She misses her best
friend terribly but is starting to understand a little more that her sister is
a special person with different needs that mommy and daddy cannot meet
alone. But we take it day by day
and push through as Chloe has taught us to do since the very beginning. I always seem to find myself saying,
‘If she can be strong from 8 months of age till now, then I can push harder and
be stronger as well.’ Still,
though, there are many moments of weakness and feeling beaten when we just miss
her so much and can’t bear the pain.
We try to see her at least once during the week and my parents continue
to be so generous in helping us on the weekends so that we are able to stay closer to Chloe's hospital in Ossining rather than driving back and forth. This is another
plea to anyone out there who has any pull or contact with St. Mary’s of
Bayside, please help us to get her a bed so we can be closer and be even more
of a support to her.
So
now, the downside of Chloe's health… Last Monday, we were admitted into New
York Presbyterian – Weill Cornell pediatric unit for a blood infection that required
heavy doses of antibiotics through an IV.
Originally, we were scheduled to come in for a routine overnight visit
EEG to check on her seizure activity but we were called early Monday morning to
alert us that she would be coming in on an ambulance in the ER. She came in groggy but was soon cooing
and kicking around so we thought she was fine but after 9 hours in the ER, many
blood tests, a shunt tap, and a starting round of two antibiotics through IV,
it was confirmed that she had an infection in her blood but it’s type was
unknown. Chloe’s white blood cell
count was high and increased overnight so we knew something was brewing. It was Group A strep which made its way
into her bloodstream. Unfortunately,
since it was in the blood we were set to stay for at least 5 days of IV
antibiotics. As her white blood
cell count improved, we were hopeful.
Friday afternoon, however, I noticed some drainage coming from her left ear
and another infection was soon confirmed.
A ruptured tympanic membrane that is essentially an ear infection was
now diagnosed. Doctors are still
working to find the right antibiotic to work on both the blood and ear
infection together so that Chloe will not have to be on so many different
medications. The real worry is
that the left ear is also where her cochlear was implanted so there needs to be
a more aggressive approach to her treatment.
For
the most part, she is comfortable.
Cornell staff has always been a blessing in our lives. Everyone knows Chloe and she is getting
the attention that she deserves.
They take great care of her medical needs and keep her happy. They even decorated her crib with
colorful art hanging above her as they know Chloe is not able to make use of
the typical crib toys. Thank you
to the kind person who left that for her.
It was a nice treat for us to see after taking the night off to be home
for Olivia’s bday celebration. We
know Chloe is in good hands.
As
for us, like I said, we take things day by day. This trip was obviously not easy for us as we did not see
anything like this coming. What we
thought would be an overnight routine visit has turned into a long stay with a
still undetermined departure. As
many of you already know, we are expecting baby #3. It is more difficult for me to be here with Chloe as I am
unable to pick her up and help as I normally would. Chloe has also been on isolation so I’ve been trying to be
more careful. Reth has taken every
overnight shift since I cannot stay on the hospital couch and has been running
back and forth checking on me and Olivia.
The timing was also tricky as Olivia’s 6th bday wish was to
have Chloe come home for a sleepover and be there for her party but being the
best sister she can be, we compromised on having a special cupcake with extra
icing that she could feed to Chloe (just a taste) during a brief visit over the
weekend.
Thank
you everyone for your kind emails and messages, for your support and for making
Olivia’s day special in the middle of this craziness.
Much love,
Michelle, Reth, Olivia, Chloe and Baby Atienza
