Brooke continues to grow slowly In every aspect. Developmentally she is way behind and at 6 months she weighed just 10lbs, at her first Christmas when she was 10 months the turkey was bigger than her. She grew out of her newborn clothes at 10 months.
Her feeding is still one of her main issues. She made a massive leap foward when she was 9 months old and began to take some of her daily intake orally! She was able to manage 20 ml from each bottle orally and the tube would take care of the rest. Her reflux became much much less and her feed rate was able to be sped up. No more grueling 90 minute tube feedings. She was able to suck her bottle for 30 mins and whatever was left was fed via her tube in around 15 mins. I was free to go out for more than an hour at a time and It was great.
But freedom to go out more into society came with its own issues. It was these months between 6 and 12 months that I became aware of society and how they can be so afraid of difference.
Because her nasal tube was out the public stopped automaticaly avoiding so the people felt free to come and meet her, and most often they wished they hadn't. They would come and say hi to the little baby and ask me her age, I would tell them and they would recoil as they noticed her facial differences and realised that the little baby wasnt perfect and off they would run.
I had one woman stop and talk to me while brooke slept in her carseat capsule, commenting on my wee baby, cooing and then asked her age, I said 12 months cheerfully. Off she went, calling out over her shoulder "I hope she is okay!" as she ran from the uncomfortable situation of speaking with an abnormal baby.
There continues to be many situations similar to that, people who are very friendly and forthcoming, eager to meet this little bundle of joy and quickly realising this baby is different, suddenly became in a hurry to get anywhere but near her.
I became blunt and I guess sometimes a little rude as the months wore on and I became more protective of my girl.
People notice her hearing aids and often ask if she was deaf from birth? I got sick of it one day and told a poor woman that no, she has the kind of deafness that comes with age.
Meanwhile aside from what I was dealing with day to day, Brooke was in and out of hospital with reccurent viruses and it is now a way of life for us.
At 12 months she was, and continues to be, a mix of developmental stages. She doesn't coo or babble. She laughs a strange silent laugh, only a little and only when tickled. She doesnt post objects and appears to have no interest in moving from the spot she sits in. Brooke began sitting at 9 months and by 11 months she no longer needed a cushion, she is not yet rolling or crawling and attends physiotherapy regularly. She is stiff thru all her limbs and her trunk and her left side is weaker than her right. She makes no attempt to reach objects that are not within immediate grasp which has worried me because it seems she has no desire to challenge herself, I work with her daily and she will get mobile, Im determined to see that she does.
Her feeding is still one of her main issues. She made a massive leap foward when she was 9 months old and began to take some of her daily intake orally! She was able to manage 20 ml from each bottle orally and the tube would take care of the rest. Her reflux became much much less and her feed rate was able to be sped up. No more grueling 90 minute tube feedings. She was able to suck her bottle for 30 mins and whatever was left was fed via her tube in around 15 mins. I was free to go out for more than an hour at a time and It was great.
But freedom to go out more into society came with its own issues. It was these months between 6 and 12 months that I became aware of society and how they can be so afraid of difference.
Because her nasal tube was out the public stopped automaticaly avoiding so the people felt free to come and meet her, and most often they wished they hadn't. They would come and say hi to the little baby and ask me her age, I would tell them and they would recoil as they noticed her facial differences and realised that the little baby wasnt perfect and off they would run.
I had one woman stop and talk to me while brooke slept in her carseat capsule, commenting on my wee baby, cooing and then asked her age, I said 12 months cheerfully. Off she went, calling out over her shoulder "I hope she is okay!" as she ran from the uncomfortable situation of speaking with an abnormal baby.
There continues to be many situations similar to that, people who are very friendly and forthcoming, eager to meet this little bundle of joy and quickly realising this baby is different, suddenly became in a hurry to get anywhere but near her.
I became blunt and I guess sometimes a little rude as the months wore on and I became more protective of my girl.
People notice her hearing aids and often ask if she was deaf from birth? I got sick of it one day and told a poor woman that no, she has the kind of deafness that comes with age.
Meanwhile aside from what I was dealing with day to day, Brooke was in and out of hospital with reccurent viruses and it is now a way of life for us.
At 12 months she was, and continues to be, a mix of developmental stages. She doesn't coo or babble. She laughs a strange silent laugh, only a little and only when tickled. She doesnt post objects and appears to have no interest in moving from the spot she sits in. Brooke began sitting at 9 months and by 11 months she no longer needed a cushion, she is not yet rolling or crawling and attends physiotherapy regularly. She is stiff thru all her limbs and her trunk and her left side is weaker than her right. She makes no attempt to reach objects that are not within immediate grasp which has worried me because it seems she has no desire to challenge herself, I work with her daily and she will get mobile, Im determined to see that she does.
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