Happy New Year to everybody. I can't believe it's been just over 1 year since my girl was born. What a horrendous year it has been. We have had some ups but it has mostly been downs. Here's hoping we have a better year.
Anyway my girl's results from her video swallow came back. Basically she is not allowed to drink any kind of liquids orally, so a bottle is out of the question, but she is allowed thicker things like puree food, trouble is trying to get her to eat them though. Any time you try and put some food in her mouth she gags on it and rolls her tongue, but she is quite happy to hold a spoon and put that in her mouth herself. So we are trying to give her longer toys like a tooth brush or a spoon to play with. This should get her mouth moving a different way and should strengthen her muscles. She should start saying different words and hopefully trying to eat. We really don't want her to have a mickey button put in and be fed through her stomach. She has already had enough issues with her bowel and stomach so that isn't really an option at the moment.
Her sleeping at night with the CPAP machine is going great. She is so used to it now. She knows that when she is in bed and her mask is on it's time to sleep and usually within 5 minutes she will fall asleep. (notice I said usually) sometimes she has a fight with me over it and then tries to tell on me to her daddy! She has 2 teeth and I am pretty sure she is getting some more. She is having restless nights and it's not normal for her. The trouble with her teething is that she doesn't dribble so we don't know if she is or not. She doesn't dribble because she isn't eating any food so she isn't producing the saliva. I don't mind the not dribbling though.
She is slowly putting on weight. At the moment she is 6.4kg. So she is still little but she is getting there. She still can't sit by herself and is not crawling. But she does push herself along the floor on her back and she can roll over. We quite often find her under the coffee table or right by the tv cabinet. Just as well we have a big living room otherwise she would be in the hallway or the kitchen.
Trinz still has quite bad reflux and it is really hard to keep all of her medicines down. We always carry a towel around with us and there is normally 1 on hand for accidents. We haven't taken her out much over the holidays because the weather hasn't always been that good. We did take her down to Aotea Lagoon and we had a bbq but the next day she had a cold, so at the end of the day it isn't really worth her getting sick. My nephew has a birthday today but I stayed home with her and my sister picked up my kids. It was too risky to take her and be around other kids. They may look well but any little sniffle or any little cough is still a very big risk for her. My family understand so it's not a big deal anyway.
New Years Eve was a pretty quiet one. Trinz was awake at midnight so the kids let off some fireworks for her on the driveway and I held her up at the window. We had Adrian and Brenda over here. Antz shared a box of bourbon and coke with his son Nooroa and I think I drunk 2 raspberry KGB's and 2 vodka mudshakes. So a very quiet night. New Years day we went over to Adrian and Brenda's house for a bbq which was nice and then we came home around 10pm. Trinz is really starting to get to know who is who now and she loves Brenda.
Our daughter has also discovered the tv. Our tv is constantly on channel 45 Playhouse Disney Channel! We all know the words to Special Agent Oso, My friends Tigger and Pooh, Imagination Movers, Chloe's Closet, Word World and not to forget her favourite Mickey Mouse Clubhouse. She dances and goes crazy on the floor. She kicks her feet and does the pelvic thrust. I should video her one day and put it on here for you. She gets really angry if you get in her way, she will pull your hair and try and push you out of her way, and if she is sitting on somebody and 1 of the kids get in her way she moves her head sideways to try and see the tv. She will ignore you too if you call out to her.
1 comment:
well, That truly made me think of all the blessings in my life has she been eating more this storie really hit home because my cousin weighed only 2 pounds when born and i really had to think of how much he is a blessing in my life he makes me so proud everyday I can only imagine how much she amases you every day!
Hope she dose well!
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