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Preemies
Re-Introduction
I guess I should go and re-introduce myself since I've been commenting on a few posts.
Hi, I'm JoJo. DH and I have been married for 6 years and 3 years ago we had our DD, Lily, at 26 weeks 2 days. She was taken by emergency C-section because I had developed HELLP Syndrome. At the time, I was a somewhat active member of this board. Then, she received her trach (on her EDD) and I moved over to the Special Needs board. Lily finally came home from the hospital after 123 days in the NICU. She came home with a G-tube, feeding pump, trach, Oxygen, a 24/7 pulse-ox, and 106 hours of in-home care nursing.
Her first year home from the hospital, we found ourselves in the ER every month. And, she ended up being hospitalized 4 times. Between her hospitalizations and various follow-up appointments, we learned that Lily had GERD, Reactive Airway Disease, Kidney stones, strabismus, and anemia. In addition, I noticed that Lily's physical development was slow, so I began researching possible diagnoses. I pushed for her to be evaluated for Cerebral Palsy (though, as far as we knew, she never had a brain bleed), and she was finally diagnosed a year and 1 month after discharge. Luckily, we were already in therapy (PT, OT, Speech and EI). Now, Lily attends group therapy - think CP daycare, but staffed with therapists. She goes there twice a week for 2.5 hours each time, and it has really been wonderful for her development!
This past fall we celebrated several big milestones. She got her first stander, her first wheelchair and her first walker. And, she underwent surgery (her 14th and 15th) to remove her Kidney stones. Then, sweet sixteen, she had her airway reconstructed and her trach removed as well. Now, she is learning how to talk (said her first 2 word sentence a week ago), and has a renewed interest in food (hooray!). On the horizon is eye surgery (to repair the strabismus), and possible hip casting.
We are also looking forward to having Lily start preschool in a week. She will be in a classroom with 16 typical children and up to 7 other children who have special needs. We are really looking forward to it, as Lily is typical in terms of her cognitive and social skills. And, we have found that typical peers have been wonderful role models for her. So, we expect a real growth spurt in terms of her development.
So, that's us. I'd be happy to answer any questions anyone may have. As you can see, we've been through quite a bit. And, while I wouldn't say we're experts, I would say we are on our way.
This discussion has been closed.
Re: Re-Introduction
I have a close family friend who has a little boy with severe CP due to a neuro injury at birth. He is so sweet and amazingly strong. His momma is even stronger. I'm sure you can truly understand
www.virginiakkent.blogspot.com
I'm not sure this is a proceedure that can be done if the child had hydronephrosis. We had to make sure the stone itself was not infected and that she did not have any UTI's before they could do the proceeedure. Otherwise, there was the risk of having an infection spread to her blood, and her becoming septic.
I should also mention the whole process put her under 4 times. The first time we went in for the proceeedure she had a UTI and we could not have it done. However, they put in the urethral stent to help her with the UTI. And, because the stent was in, she needed to be on antibiotics. The second time we went in, she had the proceeedure. Then, we needed to go for a follow up x-ray and ultrasound. That showed that there was still some stones left. So, then they did the proceeedure again. A week later, the follow up x-ray and ultrasound were clear. So, all they had to do was put her under to remove the stent.
We just found out that while her kidney stones are gone, Lily is still secreting calcium in her urine. So, now we're in uncharted territory. Her Nephrologist isn't really sure what we're dealing with now... Hurray! NOT.
www.virginiakkent.blogspot.com