We have sandhills on my parents property so I took the girls down there one afternoon recently. I should do it more often but I really have to watch Darby carefully so she doesn’t eat the sand, rocks etc. Also need to watch Summer so she doesn’t accidentally kick sand in Darby’s eyes.
We haven’t been up to that much lately but I am often too tired by night to blog very much.
Ben is still working at the mines in Central Queensland so is not at home a lot at the moment. Changes to come in the new year i hope. Also therapy morning and night for Darby really eats into our spare time. Huh what spare time? Trying to attempt masking on Darby to strengthen her breathing at the moment but it does eat into an already tight schedule. Lucky I have learnt to live with a messy house. I just hope i won’t leave it until too late to teach the girls about keeping a decent tidy house. Summer is required to tidy her room and make her bed. I haven’t managed to teach Darby to put all the DVD’s back into the TV cabinet after she gets them out yet. Something she does everytime she is on the ground crawling around, many times a day.
She has been walking around while holding onto furniture for a few weeks now. I am slightly hesitant at the thought of her actually walking. Of course I will be very excited to see it but it is the learning and falling over that i am not keen on. She gets so distressed when she hurts herself. It breaks your heart but I am not really sure how bad it is as there is only one level of crying with Darby. Such a dear little thing.
Darby is still only using one sign (more) so I have recently gone to a workshop on key word signing and am trying to incorporate more signing into my dialogue with her. It is hard to remember but I am slowly getting better. I have made up some A4 sized flashcards with real pictures and the sign is on the back with the word. She loves turning them over to look at them and is even starting to look up for me to do the sign. I can’t wait to see her signing more signs. Sometimes she is so desperate to get something out.
We recently went on holidays (medical reviews in Brisbane and an RTS Conference as well) and during the time away Darby started babbling again. She was saying Mum Mum Mum all the time and sometimes bub bub bub. Terrific work Darby. Now that we have got home and started therapy again she has stopped. She used to babble all the time but it does seem to come in waves. The current noise she is making is blowing raspberries. For the last week she has been doing it all the time. I think it is a good sensory thing for her mouth and tongue. Just as long as she doesn’t keep doing them all the time when she gets older. Not the most charming thing little girls can do. She can do them better than I can though. Good work Darby.
Some of the more fun things we did on holiday were catching up with friends in Gladstone, going to Seaworld in Brisbane and taking Summer skating. See a few photos below.
We also saw a chiropractor for Darby while we were down in Brisbane and it seemed to help her constipation issues for awhile. Things are back to normal now. Also I am wondering whether it has also helped her reflux. She seems to be having less instances of it. I have also just weaned her off omeprozole medication which so far seems to be ok. I did it very slowly. Something that I am just going to keep and eye on and hopefully will be able to pick up any future problems before they cause damage. I certainly do not want to have a permanent problem with her esophagus because of it.
I have also been taking Darby to an osteopath and we have steadily been making progress. It is hard to describe what he does as I don’t really know what I am talking about but he basically just puts his hands under Darby’s neck and on a couple of other parts of her body and feels what is happening. As I understand it he works with the fluid/nervous system in Darby’s body. This fluid system in Darby has been working around her core and has now started to spread out and improve other areas. Not sure that was a good explanation but all I can say is that she seems to make more developmental progress directly after each visit. So I will be continuing treatment.
Darby hanging out at the Royal Children’s Hospital in Brisbane and at the playground in Gladstone. Look Mum I am chewing.
Darby had a couple of colds over the course of a 2-3 months this winter season and while we were seeing her respiratory doctor he happened to hear some crackles on her chest and after an xray it showed that she had infection on her chest. My mother got diagnosed with pneumonia just after we returned home so I think she may have got the same virus (a nasty one) and was just at the start of it because she wasn’t really sick besides the mucus of a cold. Even though Darby has aspirated from birth she has never actually has pneumonia except the early stages when she was 3 weeks old and she was taking milk orally. I have always worried about it whenever she gets cold symptoms but she has always just had cold viruses. I am so grateful but I still do worry about her lungs and their health over time due to the micro-aspiration that she has. I have slowly exposed her to drinking small amounts of water over time. She sucks 10mls of water out of a 10ml syringe quite easily without coughing. Even though there has been the risk that she would micro-aspirate some of this, it has really been beneficial in helping her clear the yucky mucus that builds up in her throat. I have always thought that aspirating the mucus would be worse. The water has seemed to help her cough up the mucus and I also think it has helped her swallow. It is a really long road back from being made nil by mouth and this is just one small step on that road. I haven’t been given much advice that has made as much of a difference in her life from any of the speech therapists Darby has seen. The most recent one felt Darby needed another Modified Barrium Swallow to prove that the 50-100ml of water that I give her most days is safe for her. I did tell her that I have been doing that for many months now and she hasn’t been ill because of it so it is safe enough. I have really lost interest of late when most of the feeding therapy sessions (once a month) I have been too spend all the time with me explaining what I have been feeding Darby and what I have been doing rather than getting anything back. They just state the obvious and think that they are offering help. Well I know that Darby hasn’t been putting on a lot of weight lately but she is mobile now and she doesn’t get sweets like other children her age get. And I have yet to hear a dietician or speech therapist comment on the quality of her nutrition rather than just suggest I add more formula or more saturated fats to her diet. Margarine seems to be a favourite of the Dieticians we have seen. You have to be kidding right! Well that is my rant for the moment. Sick and tired of the lack of knowledge in speech therapy and feeding areas.
As for Summer, she is growing at a fast rate. She loves being with her cousins who come over to ride their pony and horse. I do wish they were closer in age. Too much idol worship for my liking. A stage I hope. It is great being on the farm for both the girls. Summer does like to dig around in the dirt and be outside but also likes to dress up like a real little princess. I am hoping to sort out a sandpit so that she can play in the sand rather than the dirt.
The garden has also been a great exercise for Summer. Summer, Bailey and Taylor all loved picking carrots and peas straight from the garden and eating them. We never managed to get any for cooking with, but raw is definitely the best. I must say it would be better if I had more time to weed and manage pests but we haven’t done too badly out of the garden. We have been having a lot of tomatoes coming on recently. Too many to eat, so I have been making tomato (pasta) sauce and freezing it.
Well I know it has been past time for a post. I have written more than I thought I was going to. Until next time. cheers
