Yesterday we had a meeting with the geneticist, our actual face-to-face meeting. Got better news than expected. Of course, it’s still too soon to predict his future health. But the fact that my husband was there to discuss Nathaniel’s diagnosis and prognosis was a big step. He finally understood why I was so glued to the internet. He asked what I was expecting to hear as we were leaving and I told him I was expecting to hear a lot of, “time will tell,” and that’s exactly what I heard AND I was happy with that…the doctor did say that he was seeing all the right people (specialists) and has been on the right track for a while. His therapies have all been bumped up to twice a week and we plan to push him more than ever. Yesterday, he stood….we had to trigger his little buttocks muscles, but triggering was all he needed. Once released, he continued to stand! There he was, 15 months old-all 26.77inches and 13lb.s 13 oz.s standing! He looked so cute. He only did it for maybe 15 seconds at a time, but he still did it 🙂 I was so proud of him. I just fall more and more in love with him every day.
If you enjoyed this article, please consider sharing it!
You are such an inspiration!! Your attitude and love twoard your little man is amazing!! I have been so gaurded and scared and you encourage me so much! Is little man rolling or sitting? Is he standing on his own?! Does he reach for toys…my little man will be 12 months here soon. Any advice is so appreicated!! Is he on seizure medication? Did they give you a region and size of deletion and tell you prognosis from this? I hear so many times that size does not matter/and than it does matter…it’s so confusing.
Thank you so much…I still feel so lost. People like you are making me feel so empowered, so THANK YOU! He isn’t sitting on his own. If I sit him between my legs and squeeze tightly, he can sit up for maybe 30 seconds, then he kinda flops over. He rests for a few seconds and then will use his ab/core muscles and arms to push himself up….and then it just keeps repeating. He doesn’t like to be on his stomach at all!!! If he happens to roll onto his stomach, he’s like, “what?!” and immediately rolls back over onto his back. God forbid he’s on his stomach!! He is on med.s to control his seizures. He’s on valproic acid 2 ml.’s twice a day. He stands with assistance and that’s just recently. He is reaching for objects and will bring them to his mouth….that’s been within the past month, if that. The geneticist did tell me the region that was affected…the way he explained it was, “let’s say there is a block of 16 houses and he lives on the 3rd house from the end of the block.” The geneticist did say he had a deletion and a duplication. I don’t want to think about the “house” he lives in, I just want to continue to push him and not pay attention to the size of the deletion because I’ve read the same as you. Especially on the community blog…venting on this website has made me feel 100 times better. I would totally recommend it.
Every life is a ‘wait and see’. Rochelle was not diagnosed until she was 10 years old. Very little was known about WHS back then. Although more is known now, the future is still unpredictable. Information about WHS is helpful, but each child is different. When I read about the children on this site, I see similarities and differences. For example, some children talk, others don’t. We need to ‘wait and see’. Each child has his or her own unfolding plan.