The next day at the hospital our nurses brought us in information that they found on the Internet about dwarfism. It helped so much to read all I could. Have we got home from the hospital I hit the ground running. I wanted to know everything I could to help Jalinn through out her life. I got in touch with our local LPA, Jack and Lecia. They are the best. Lecia is so easy to talk with and she is a big help. I also joined grouped on facebook and told our story. That helped as well. There are so many families out there and they all are the best for helping me understand what Jalinn will need. There is a list of doctor's that we needed to see so I just started going down the list. We have seen the genetic doctor to confirm the blood test, we have seen the sleep clinic and they are going to schedule a sleep study just to get a base line on Jalinn. On April 30th we did the MRI and I was so scared. After reading online about the need to be extra careful when putting a little person to sleep for and MRI can be tricky, I was a nervous wreck. We got the results back and had to see a neuro surgeon, right now they are watching the foreman magum..a portion of Jalinn's spinal cord is narrow. We go back for a another MRI in October to see how things go. I try not to worry about it but I do. I am just so scared for my baby. Sometimes I just want to scream out Why Jalinn. I know things could be worst but I have never had to deal with anything like this and it is scary.
I only advise that I can give to an new LP parent is to keep track of everything and read and ask questions as much as you can. I have a binder that has all of Jalinn's medical notes from just her ped's check up to see all the doctor's at Children's Mercy. It has helped me out.
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