Alexandrea Blase
TrachKid Profile
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Alexandrea was born at 26 weeks on August 6, 2006. We are foster
parents, and we were called to take "Ali" on October 12, 2006. We were
able to go and see her for the first time on October 13, 2006. She had
just come out of recovery for getting her trach placed. We spent the
next week at her bedside everyday.
On October 21, 2006 as I
was sitting at her bedside, the Neonatologist asked me to come and talk
to him. He was requesting the birth parents to come in and advising
them to take Ali off the vent. They diagnosed her with Cerebral
Atrophy and said that she would not survive, and if she did she would
be a vegetable. The birth parents came in a refused to take her off
the vent. THANK GOD! Alexandrea gave us great scares. She sat'd 30% for 24 hours
and coded 15 times. On October 23, 2006, after days of praying, Ali
started showing signs of getting better. Within a few days, she was
awake, and eating a bottle. PRAISE GOD!
We spent another 3 months
in NICU before being transferred to PICU. She stayed in PICU for 4
months before coming home on April 3, 2007. We had many scares
throughout the first few weeks home. Week 4, she ended up with
pneumonia and entered Peds ICU. Again... doctors did not give her any
hope to survive, and yet again, she surprised everyone of them.
Jump
ahead to the present..... Ali will turn 3 in August (2009). She was
booted out of OT and PT because she is developmentally on target. She
still attends FT to help with communication. She signs about 150 words
and learning more everyday. We are looking into a communication device to make things easier on her for when she starts school.
We are currently working on
getting her trach out. It is not working.... she has stenosis and
after reconstructive surgery (April 27, 2009), two dialations (May 21, and 28) and now putting the stint
back in (June 3, 2009), they are hoping to have a big enough airway for her to be able
to talk when we are done. We will do 2 more dialations and if they do
not work then we are going to give her a break and try again in a year
or two.
On another note... we finalized Ali's adoption on January 9, 2009.
Update 8/12/10
It has been a very long year. Ali has had multiple surgeries in an attempt to get her trach out. That never happened. Our last surgery in June 2010, her airway was completely closed off by a swollen airway, which they think is swollen because of having staphylococcus pneumonia for two months. The rib graft they put in last year has collapsed over and is protruding through the airway. We are not sure she will ever get her trach out.
Ali continues to learn sign. She has a signing vocabulary of 275-300 words. She just got a Passe Muir and now her speaking vocabulary is taking off. She LOVES to talk, and we even have to "unplug" her to get her to be quiet. Never thought we would want her to be quiet.
Ali just turned 4 years old. She has just reached the height of a 2 year old.... FINALLY. Growth Hormone shots are wonderful.
Ali has another bronch scheduled for September 29th to see what her airway status is.
If you have questions, email me at carlyqkitty@yahoo.com
History
- Blog
- View recent blog entries
- Member for
- 2 years 41 weeks
Location
- Country
- United States
- State/Province
- Illinois
