Firstly, I would just like to apologize for taking so long to give an update on Gemma's website. For those of you that don't know, we live in a remote area of Lesotho running a guest lodge, where our internet has not been working. Up until now, we haven't managed to get near the city due to the busy Christmas season. On that note, we hope you all had a very MERRY Christmas and fun filled New Year. I have a good feeling that 2011 is going to be a good one.
While we were still in Austria, we had ordered a Constant Glucose Monitor for Gemma. Shortly after we arrived back we received a 2 hour demonstration on how to insert the sensor, use the machine etc. I'm not sure if it is that the insertion of the monitor is very painful, or more the sound that it makes that terrifies Gemma. The main problem is that it only lasts 6 days before we have to put a new one in. Gemma has used it twice since we have had it, but we have given her a few weeks break and will try and use it again when she is ready. It really is useful to help prevent her having hypo's, because as she tries new foods, they have different effects on her blood sugars. As the year goes by we will give an update on how the CGM is or isn't working. Gemma's blood sugars have been very sporadic so as it stands we test her fingers on average 7 times a day. The first few days we were at home (Lesotho), Gemma had a bout of diarrhea, and this always affects her blood sugars. She had friends visiting from Johannesburg (Jade and Jordan), and we really didn't want to have to rush her to hospital. She was lethargic and slept for half a day, whilst having regular hypo's. We decided to treat her ourselves with 2 hourly glucagon injections (0.10mls at a time), alongside regular feeds. After 48 hours the bug had obviously cleared and her sugars were back to normal. This was a huge step for us to take. In the past we would have rushed her straight to hospital (2.5 hours away). We had said to ourselves that if her sugars weren't stable within 48 hours we would have taken her. The first week or so at home was extremely tiring. Gemma would resist eating every single meal, but gradually as the weeks have gone by, she is becoming more willing. The important thing, however, is that we have NOT used her tube since Graz and are almost ready to take it out. Gemma's operation was done differently to most children with g-tubes. Most children have theirs inserted laparoscopically, whilst hers was done surgically. We just need to get advice from the surgeon as to whether her hole needs to be stitched up or not. He is a very busy man, and we haven't been able to speak to him yet. Gemma currently eats about 7 small meals a day. This is roughly her meal schedule, 07:30am: 1 packet Oats-So-Easy (easier texture than Jungle Oats) 10:00am: 200 mls Apple Juice 12:00pm: Polycose water 14:00pm: 200 mls Frebini (Nutritious High Fibre Formula) 17:00pm: Mashed Banana and milk 18:30pm: Polycose Water 20:30pm 175mls Vanilla Yoghurt with 30grams Maizena (This keeps her blood sugars stable throughout the night). We dish her a plate of the same meal we eat at lunch and dinner, and she is slowly starting to have a few bites of veggies, meat etc. Our next goal is to get her to encourage her to eat more fruit, veggies, etc. to replace the polycose water as that has no nutritional value. We often get advised to blend these foods into softer textures, but she is old enough now to know that she is not a baby and wants to eat "big food" with us, so we continue to let her go at her own pace. She is still not asking for food, but one thing she always asks for is "ice-cold water." As good as water is for her to drink, unfortunately it does nothing for her blood sugars, but we are very happy that she choses to drink it. Having Gemma eating has changed our lives dramatically. We live in a beautiful mountainous region, where you can go for pony treks and hikes to nearby waterfall etc. For 3 years it has been really difficult taking Gemma away from the lodge for more than two hours at a time, as we would have had to take pumps, tubes, etc. Gemma went on her first 4 hour pony trek to a nearby waterfall. Gemma has ridden many times in her life, only for an hour at a time, but to see her that confident on the horse, going up and down steep cliffs, being led by a leading boy, was really amazing to see. With all the that she has been through in her short little life, she really does live life to the full. As for Bryce, he had his 2nd birthday on the 4th of January. He is becoming such a big boy, and doesn't stop talking. He still has a fall, or a bump at least once a day, but this too, is a good sign of a little boy living his life to the full. We wish all of you the very best for 2011, and as soon as we get our internet sorted out in Lesotho, we will keep you updated more regularly.
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