The whirl wind of learning about dwarfism

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.

The day my world changed

The reason I started this blog is to help me express my concerns and love for my little Jalinn and the rest of our kiddo's. To start this out. We have 4 kiddo's: Taylor is 9, Kaylie is 6, Hunter is 2 and Jalinn is now 4 months. Jalinn was born with a form of dwarfism called achondroplasia. Let me back up some. Jalinn as a surprise when we found out that I was pregnant. It was a complete shock but happy at the same time. I love my kiddo's and would have not changed it for the world. I have a very normal pregnancy with no problems. My due date was on January 6th but with the holiday and all my doctor decided to change the date to December 31st. I was having a c-section. On December 22nd, I went to the doctor for a scheduled sonogram and they noticed that a portion of the sack was tearing away so I was admitted to the hospital to be watched and monitored. That night my doctor told us that they are going to perform the c-section the next day which I was a little upset because I know we were not going to be home for Christmas with our other kids, I knew the doctor was doing what needed to be done. Jalinn was born on December 23rd the same day as your older cousin Catilyn. After her birth Jason went right over to her and said "her forward likes big" I didn't think any of it since our oldest Taylor head as odd shape as birth too. They need got her all wrapped up and I got to see her and Jason was holding. They noticed that Jalinn was starting to breathe a little funny so the took her into the nursery to evaluate her. That is when they noticed that she did have a rather large head and had the shorten limbs. They were fearful that she had hydrocephalus "water on the brain" so they called the neuro surgeon from Children's Mercy over. I was unable to see her for about 4 hours. They didn't want to move her until the neuro surgeon got there. All that we were aware of at this point was the hydrocephalus. I was so scared...none of my other kids had any problems at birth and I was able to hold them right away. About 4 hours later walks into my room the neuro surgeon, my nurse and the head nursery nurse. I know at that point something was wrong. The neuro surgeon started to talk and she said that there was NO hydrocephalus but Jalinn does have achondroplasia an form of dwarfism. She said it was the most common form. She continued to talk and honestly I really don't remember what all she said. It was all such a blur. She kind of stopped talking and I looked at her and said "so you are telling me that my baby has a form of dwarfism". Once those words left my mouth I lost it. Every emotion that you can think of came out. It was so hard to hear that my baby was going to be "different". Jason then ask what is the life span (at this point we know nothing about dwarfism except what you see on TV). The doctor said she will live a normal life, she will just be shorten than the rest of us. At this point both of my parents and the kids were in the room. My mom left to go get my sister (she was down the hall visiting her friend that just had a baby the day before). I could not look at anyone. The doctor has to confirm we will need to do blood work and she x-ray of her bones. She said we could the x-ray that day or wait until we got down to Children's Mercy. I looked right at her and said "let's do it now. I have myself and whole lot of family to prepare for this". I then ask everyone to leave so that Jason and I could have a moment to take it all in. I cried so hard and it was the first time in a long time Jason cried. It was more of shock. Thoughts were going through my mind like "Why my baby?", "Why us?" "Will she drive, go to prom and have friends. I know the people are mean and I didn't want my baby to have anything to worry about in life. I just cried and held on to me sweet little girl for the rest of day.