On April 3rd we received the news that we were dreading. Landon was diagnosed with Prader-Willi Syndrome. This is a genetic disorder that is caused by the absence of chromosome 15. It causes low muscle tone at birth and will eventually make him feel as though he is constantly hungry. He will also have a low metabolism with the potential of a low IQ, learning disabilities and trouble reaching his milestones. Only time will tell how severe it is, but we are hoping that he has a mild case. I had a very hard time when I first learned that he would be a special needs child but I have now accepted it and feel blessed to be his mother and have him in our lives. Andrew and I are going to do our best to make sure he lives a happy, healthy life. This will have to be a team effort and an entire lifestyle change for the whole family and we realize that we have a long road ahead of us but we are ready to take it on.
His diagnosis requires many doctors appointments with different specialists but we are lucky that there are so many programs and people to help us get through each step. The staff at the Banner Desert NICU was so wonderful- we couldn't of asked for a better team to help us get through this tough time. Landon is currently taking hormone shots to help with his low tone. He is seeing a endocrinologist, Dr. Holland, and a geneticist, Dr. Pearson. He has also started in the AzEIP, Arizona Early Intervention Program, which will send therapists to our home to help him.
It is very unfortunate and I do not wish for any family or child to go through these kind of difficulties, but Landon is lucky to have such a large support team behind him and family to love and care for him, as are we. Thank you to everyone, we really appreciate everything.
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| Relaxing with dad! |
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| First bath mom gave him in hospital |
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| He got to take his feeding tube out! yay! |
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