I know all baptisms are very special, but this baptism is extra special to our family because this one even 2 years we did not know if this would be a reality. All we could do was cling to the hope that maybe someday she would healthy enough, and have enough lung strength to be submerged under the water during winter.
With an October birthday we knew this baptism, would most likely take place in November, a cold month. This is also during the heaviest beginning of flu/RSV season. With a lower immune system, weakened lungs, GI issues, and many other heath problems going on October and November have been the months with the most hospitalizations, and then typically December-March have too as well. Knowing that October through March are risky months for her we did not know what the years 5-8 especially would hold.
Then comes year 7 and things seem to become much better until November. November she became sick due to illnesses running through the school. We tried everything with her pediatrician. Nothing was working so her doctors at John Hopkins wanted her evaluated at the ER. She was admitted. We spent a week, went home, went back to school, and thought she was ok. Next thing we knew she was very sick again. Same thing, lungs sounded worse, rejected her feeds. Admitted again.
This cycle continued throughout the rest of the year. By the time the year was over she had missed over half the school year even with after school tutoring to make up for lost days. Her problem? Well other kids went home sick and then came back to school partially sick because the parents had to work. That or a teacher or there was also sick. Wearing a mask was not enough for her to keep her from getting sick.
Yes, this seemed unfair to her. Was it really? Well think about the teachers who had classes depending on them. Parents had jobs depending on them. Students had classes and classwork waiting for them. What it boiled down to was her body was unable to handle to stresses of school.
As the school year continued on she became more worn down. She would go into the nurses office for her required breathing treatments and collapse in exhaustion during. The nurse would let her sleep until she woke up then send her back to class because at least this way she would still get credit for being in school. Sadly these sleeping sessions would become frequent and longer. Her hospitalizations would also become more frequent and longer.
Then hits Super storm Sandy the mother of all storms. We had been in the hospital for I believe a week or so now, and the hurricane we on its way. The Date was October 22, 2012 and the hospital was calling the base and communicating with emergency crews there (and long the way home) making sure there was shelter with electricity for us for Ellie.
We had to have electricity for her feeding pumps. I luckily had both her pumps with me and we had both fully charged so we had power for her for about 36 hours.
Fast forwarding back today she is now 8, homeschooled and doing so much better this year health wise. Is this because we decided to keep her home? Is this because she is older and becoming stronger? Is this because she is home and growing stronger? Only our Father in Heaven really knows. What I do know is that she is thriving this year and learning so much.
