wolfhirschhorn.org

Hello All,
I am so happy to finally be joining this awesome website made up of such a unique community.
My Jada girl was diagnosed with WHS when she was about 2 weeks old. I had a pretty rough pregnancy. I was put on strict bed rest at 20 weeks, hospital bed rest at 31 weeks, and ultimately induced into labor at 34 weeks. I was diagnosed with IUGR (Intrauterine Growth Restriction), which is why they induced my labor. The doctors thought that Jada would do better outside of me than for me to carry her full term. She was born 3.8 lbs, and 16 inches. She was in the NICU for nearly 3 weeks. Up until the moment they diagnosed her the doctors did not lead on at all that there may be something wrong. They presented it to me as if they were just waiting for her to breathe on her own before we were able to go home. So as you can imagine the day I found out about her diagnosis was a hard one. This was the first case of WHS that her doctor had ever seen. He gave me a two page packet of information, which of course was depressing to read, and proceeded to give me the worst case scenario. Said she would never, walk, talk, and would need constant care. Basically, making it seem like she would just be existing, and not really living. Needless to say, I never wanted to see that doctor again, and I haven’t. After reading this small packet of information, and trying to make sense of it all, I took a moment to grieve my loss. After that day, that moment, I made a promise to myself to never look back. I made a promise to Jada that I would not limit her. I would not let her live a still life, but try to fill her life with nothing but love and joy. I would take the word “never” from my vocabulary, and make sure that Jada had every opportunity to be great, to accomplish any and everything, and to live life.
Most of you probably know how the story goes after this… once we were released from the hospital we had a ton of appointments with different specialist, doctors, and therapist. A lot of these appointments still go on today, but not as frequent. We have been blessed with a great team that have been nothing but supportive and encouraging since day one!
Luckily Jada has never had to have any major surgeries, nor has she had any problems with any internal organs. She had a small heart murmur when she was first born, which closed after one day of meds. She has had tubes put in her ears three separate occasions, and her adenoids removed. She has had several long seizures ranging from 20 minutes- 4 hours. She had her first one when she was 7 months old, but I am happy to say she has not had a seizure for nearly 6 years. She was hospitalized several times her first couple of winters due to respiratory issues. She has worn glasses since she was one years old due to a lazy eye, and being far-sighted.
Jada took her first steps when she was 4 years old the day after Mother’s Day. That was the best gift ever! She is non-verbal for now. I do not rule out the possibility that she may talk one day. We are working on finding the perfect device for her to use to communicate. She uses a mini iPad now, but has some issues with it. She is very very smart!! If we could find the right device for her to use I know she would have so much to say! We have been fortunate to have Jada enrolled in a school that has their classes integrated. She is involved with her homeroom class and specials that has mainly children with typical abilities, and then visits her support specialist when she needs to work on her own goals. She has a one on one paraprofessional whom is with her at all times during school hours. Before she was of school age she attended a regular daycare. Some of the best advice I was ever given was to make sure she was always with typical children, and not put somewhere with only children with special needs. I think this has been great for Jada, and for the other kids around her. It is a learning experience for everyone.
Jada is such a happy child, and loves to be on the move, and loves to be home with family. She is a great big sister to her 8.5 month old baby brother. She is the light of my life, and she has changed me in so many ways, and has taught me so much. There is definitely something special about our children. I can’t even tell you how many lives my Jada has touched just in these short 8 years. I am encouraged by her life, and am looking forward to a bright future for my girl.
My family and I live in the Cincinnati area, so if there are any other families that are near by, we would love to connect!

Nice to meet you all,

Shana