Andy had a great day at school and home for his birthday. He got a few new pairs of pajamas, iTunes card for his headphones, a ball, and a few toys to put into buckets. We celebrated with pizza, salad, cake and ice cream.
Tonight, Andy is back to uncontrollable crying. He kind of snapped at the end of the night, and we don't know what he needs to calm down. Right now I have mastitis, a breast infection, that makes me feel like I have a bad flu, so it's hard for me to console him. I have the body aches and chills and pain, it's not good. Poor Andy is trying to go to sleep right now, and I feel so helpless on what to do for him.
I'm hoping tomorrow will be a better day, but it's the weekend and he won't have school. When there's no structured routine for him, he can become a bit bored and frustrated. He still enjoys watching Dora the Explorer, and Yo Gabba Gabba. These shows are on all the time for him, and also at our camper. They make him happy. All the music and colorful characters really entertain him. We don't mind the shows either, they're a bit funny and silly.
Andy still mainly plays on the floor when he is at home, but at school they have him at a desk, and different stations. He enjoys it there with all the kids he can watch. He continues to get upset if he hears the baby make any noises, squeals, or crying, but we use his headphones to try and help his meltdowns.
I feel like I've got to say some extra prayers tonight for all
of our health, and for Andy. It's been tough lately and we are just trying to keep our heads above water with everything. Things have been much better between my older daughter and I so that's been great. It just seems our immune systems have been down lately, and Andy has been catching every single germ from school. He's missed a tremendous amount of school this year due to this. He's had several flu's and colds, it's been pretty bad. We try hard to keep his illnesses from the baby too, which is difficult. All I can do is pray for better days to come.
I just became a registered nurse, and my ten-year-old son is infant-like, has frequent meltdowns, and cannot stand without support. He is missing a piece of DNA (chromosome 9q22.2) but we are unsure if it made him disabled. He has a diagnosis of severely multiply impaired, paucity of white brain matter, partial agenesis of the corpus callosum, microcephaly, deformities of the ankle and foot, and Autism.
Friday, May 19, 2017
Sunday, May 7, 2017
A Dark Cloud Lifted
A dark cloud has been lifted with the arrival of my new baby. She is everything that I have been aching for, for years. My husband and I always thought, and wanted to have, three or four kids. When Andy was born, our second child, everything came to a halt. When we discovered how severely disabled he was, our dreams of a bigger family shattered abruptly.
We searched for answers for years, as to whether this could happen to another child of ours. It doesn't appear to be genetic. It seems to be a very uncommon thing, if in fact, his disabilities are due to a small snippet of missing DNA.
I was depressed and sad for many years, about not being able to have anymore babies, due to our fears. We couldn't fathom having another child like Andy. It would be complete chaos right? We were not trying to have another child, but my new daughter slipped through the cracks, and she's here.
I have to say, I'm loving it. She's perfect, and so cuddly and sweet. What a joy she is. Everything has changed for the better. I'm taking care of the baby now, and my husband is caring for Andy. I'm so lucky that he can help. It's been a nice break after seven years of all Andy all the time. I really needed this, and I love that my daughter gets to have a sister. How awesome.
I thank God all the time for this baby. What an absolute blessing she is, and she seems to be developing normally. What a huge relief and I am so over the moon to have her, and it is helping to bring my older daughter and I closer together. I am also taking classes, and the new shift in focus is just so great for my well being.
I'm not telling anyone to have a baby to solve issues with having to raise a severely impaired child. For me personally, it was a dream come true, to have another daughter, and also a much needed life shift. I didn't think I'd get the chance to have any other children, and now here I am with a four month old baby. I'm not overwhelmed, I'm overjoyed.
We searched for answers for years, as to whether this could happen to another child of ours. It doesn't appear to be genetic. It seems to be a very uncommon thing, if in fact, his disabilities are due to a small snippet of missing DNA.
I was depressed and sad for many years, about not being able to have anymore babies, due to our fears. We couldn't fathom having another child like Andy. It would be complete chaos right? We were not trying to have another child, but my new daughter slipped through the cracks, and she's here.
I have to say, I'm loving it. She's perfect, and so cuddly and sweet. What a joy she is. Everything has changed for the better. I'm taking care of the baby now, and my husband is caring for Andy. I'm so lucky that he can help. It's been a nice break after seven years of all Andy all the time. I really needed this, and I love that my daughter gets to have a sister. How awesome.
I thank God all the time for this baby. What an absolute blessing she is, and she seems to be developing normally. What a huge relief and I am so over the moon to have her, and it is helping to bring my older daughter and I closer together. I am also taking classes, and the new shift in focus is just so great for my well being.
I'm not telling anyone to have a baby to solve issues with having to raise a severely impaired child. For me personally, it was a dream come true, to have another daughter, and also a much needed life shift. I didn't think I'd get the chance to have any other children, and now here I am with a four month old baby. I'm not overwhelmed, I'm overjoyed.
Subscribe to:
Posts (Atom)