Having internet freely available is really fantastic. I didn't pack many bedtime stories to read to Gemma at night. There are plenty of books here, but of course they are all in German. I googled "Repunzel" and found a great website with hundreds of stories to read. We read two and now Gemma is now very relaxed and almost asleep beside me, after a busy day.
Today has been a public holiday, so Gemma's program will officially only start tomorrow. We made the most of our last day, by exploring a bit of the city. Firstly, however, Gemma played with a bread roll for breakfast. She broke it up into hundreds of pieces without putting any in her mouth. but at least she is showing a positive feeling towards food which I think is a good start. I met with Prof. Dunitz-Scheer shortly afterwards, and we decided to drop all of her feeds by 25mls each. Gemma has made friends with many of the children in the ward already, and was being taught to sing "head, shoulders, knees and toes"by an older girl, Annamaria, when Michael and Bryce arrived. The guesthouse doesn't have a bath, so we bathed Bryce in Gemma's bath. Just before Gemma's 11am feed we offered her some bread, nutella, banana's and yoghurt. She chose to have two bites of a banana, a lot of which she spat out, but she did have two spoonfuls of yoghurt. Her blood sugar level at 11am was 4.3. This is a great result, even after having reduced her feed slightly. A suggestion in the Lonely Planet to entertain children was the Schlossbergbahn. This is a train that takes you up to a Fortress in the middle of the city. Before we went up the train, we went on a children's train taking us through a tunnel of caves inside the mountain. Every few seconds we passed different fairytale scenes. I will try post some pictures soon so you can see how sweet it was. I'm not sure who enjoyed the trip more - the children or us. We then went up the side of the mountain on the real train. Gemma ate half a tuc biscuit on the way up. The views of the city from above are really stunning. We had a picnic at the top. Gemma took about 5 slices of ham, stacked them up and folded them over and said she was building a house. She then wanted to give her house to a little girl she met. I can't imagine what her parents were thinking when they saw a pile of meat being offered to their little girl. We went down the mountain via a glass lift. It was nearing 14:30, time for Gemma's next feed. She was showing signs of low sugar (irratability). Her sugar was 2.9, which is fairly low, but gave her her feed. We then headed back to the clinic area to meet friends (Bronwen and Peter) of a friend (Kelly). Kelly introduced Bronwen (South African) to us via facebook. We had a cappuccino and cheesecake with them. It was really great to meet them and our conversations flowed freely, as if we have known them for a long time. We have met many wonderful people during Gemma's journey, most of whom we may have only met briefly but consider great friends. We feel extremely blessed with all the goodness that surrounds us. I hate to say, but today we witnessed Bryce breaking his first heart. When we arrived at the Coffee Shop, a little girl, Bryce's age came running to him and they immediately embraced each other with a big hug and even a kiss on the cheeks. She was with her father, and a few minutes later he wanted to leave. She was very upset, and crying ran back to Bryce to give him another hug before they left. As she walked past us, she had such a bounce in her step as if she had acheived something grand. It was SO adorable. Bryce however, found another family with older children, to play with while we could enjoy a peaceful chat. Gemma at this stage had fallen asleep in her pram. We were a bit concerned because of yesterday's incident when her blood sugars dropped as soon as she slept. I tested her,but thankfully her sugars were good. The poor child can hardly rest peacefully with her paranoid mother constantly pricking and prodding her. It started to get chilly, so we said our goodbyes and headed back to the clinic. We laid out some food for the children. Gemma had about 2 spoons of yoghurt and 2 bites of an apple. She spat about half out and stored the other half in her cheek, which I am sure with time she must have swallowed as I did not see her spit it out. Her 18:00 blood sugar was good, so that made us very happy once again. Michael and Bryce went back after supper. Michael is going to be a lean machine by the end of this trip. How he manages that hill every evening with 13kgs of a Bryce on his back, I just don't know. I met with the endocrinologist very briefly this evening. I asked how she felt about Gemma joining the feeding clinic. Her honest answer was that it can be dangerous with the chances of Gemma going low, but that she can see Gemma is an intelligent child and we just need to monitor her continuously. I was appreciative by her honesty. As we have seen so far, Gemma's blood sugars are on average, looking better. From my personal point of view there does seems to be a pattern of higher blood sugar readings when she has eaten something substantial, like yoghurt for instance. Baby steps, just taking it one day at a time.
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Firstly, I would really like to thank everyone for the comments, the support and love that we are receiving. I do enjoy writing this blog, but it makes it all the more worthwhile knowing that others are interested in Gemma's story.
Today has been an amazing day (and the course has not even begun yet). Gems and I slept in very late, only woke up at 8am. She was on a constant feed of polycose all night - we will be doing this with her, until her blood sugars are completely stable. Breakfast was laid out in the play room. There were some cereals,cold meats, cheeses, spreads and bread. Gemma asked for some cereal which I poured for her, but she didn't eat it, so not having Glenn (Gemma's uncle, the hoover) around, I finished it for her. I did open a mini Nutella spread for her, which she really enjoyed. She had about 5 finger licks of it, until she decided her hands were getting dirty so she wanted to wash them. It was amazing seeing her enjoying the taste of chocolate. Shortly after breakfast, Prof. Dunitz Scheer arrived and chatted to Gemma and myself. The first thing she explained is that one of the first rules of the program, is that there is to be absolutely no negative talk about negative hospital experiences etc, around our children. Michael and Bryce arrived during our conversation, so she was then able to talk "hospital talk"to me whilst Michael played with Gems and Bryce. We discussed a plan to try and start allowing Gemma to be hungry. We decided that we would drop one of her feeds, and rather add cornstarch and fibre to all of her feeds to allow them to last longer. She also told me about a device that we will be introduced to on Tuesday that will monitor Gemma's blood sugars constantly without having to prick her fingers. We are so excited about this, as her poor fingers are scarred from pricking her at least 6 times a day for her whole life. (Today I pricked her 11 times, but will explain that later). It was really wonderful speaking to the Prof, and she believes this program will work for Gemma. She also mentioned that the endocrinologist here has already been in contact with Dr. Hussein from Great Ormond Street, London, and they all know her entire history. This now gives us great confidence and hope. We waited in the hospital until her 11:00 feed. The Prof. came running back to us just before 11:00 saying that we must please offer her something to eat before we start the feed via the pump. We did so and she chose to have a slice of bread, which she buttered herself. She took bites of almost the whole slice. Most of it she spat out, but a few bits were swallowed. We were very impressed, but we have to also try our best to not make a big deal of it. There is a lovely playpark just outside the childrens ward. After Gemma's feed we played with Gems and Bryce in the park, Bryce (AKA Mountain Man), only had two bumps on the head - now that is remarkable - ONLY TWO. I mustn't leave my poor boy out of the picture, and also congratulate him when he does well :-) It is very flexible at the hospital, we can come and go as we please. Prof. encourages us to have as normal a routine as possible. Gemma has not once made a fuss when a nurse or doctor comes near her, and I totally believe it is because of this relaxed attitude. We made our way back to the guesthouse. It is so beautiful. There are lama's, deer, peacocks, a pony and goats there roaming in the fields (birds in the avary), and the lady who runs the guesthouse is so dear. She does not speak a word of english, but still always tries to have a full conversation with you, you just need to smile and nod your head and she is happy. I hate to be negative on a good day as this, but the only bad thing about the guesthouse is the dreaded hill we have to walk up to get to the room. Luckily for me there were some Lama's to chat to along the way so Michael didn't think I was slacking. Gemma's next feed was due at 2:30 pm, so just before that we had some lunch and she asked for Yoghurt. She ate three quarters of it and even let Michael feed her. Her blood sugar at 2:30 was 2.7 which was low again. We immediately gave her, her Pediasure feed, and 30 minutes after she was extremely irretable and fell asleep within seconds. I tested her, and she was 2.4. This reading falls withing the danger zone. For the first time in our lives we were relaxed about it, and waited 15 minutes to see what would happen. Her blood sugars starting getting higher. I tested her every 15 to 30 minutes for the next 3 hours, and her sugars raised above 3.5, even when she woke up. For us this was a miraculous situation. Never have we ever not taken action when her sugars drop that low, so I do believe a whole new chapter in her life (and ours) is taking place. We all headed back to the clinic (won't mention the word hospital) shortly after this incident. We offered Gemma some food for supper, but this time she wasn't interested. I had saved a mini Nutella from breakfast, and gave some spread on bread to Bryce. Well......we will now have to keep a Nutella fund going for Bryce, because I don't know if he will go back to eating real food after he tasted that!!!!!!! There is a foosball (sp) in the playroom. We all played that after supper. Bryce and I on one team vs Gemma and Michael. I now know why people love it so much. I got so into it that I accidentally held onto the pole Bryce was playing, and he jumped off the chair and threw the biggest tantrum....talk about being a good sportsman. It's not great having to say goodnight to M and B every night, but this way at least we get some rest, otherwise the children keep each other up all night. We are also able to spend quality time with one of our children at a time, and during the course of the program we will swap roles. After a really good day, we look forward to what is up ahead. A funny for the day. It's a song Gemma made up a while back that I thought I would share. You have to kind of sing it with a tune "if you don't go back to your house today then you get a smack on your bottom, tss tss" Not sooo funny, but Bryce at not even 2 has been prescribed some ointment called Scar Science to get rid of his 5 scars on his face. The treatment is being started tonight. We arrived in Graz today, after a good flight over. The children did really well, considering they were in aeroplanes and in transit for almost 24 hours.
We kept Gemma on a constant feed of polycose water most of way here just to keep her blood sugars stable. This worked for the flight, but unfortunately her blood sugars have been low since then. She was admitted into the hospital today instead of on Sunday, so she could be closely monitored. Although I am glad that she is in hospital, where the nurses are very professional and friendly, I do feel very dispondent as the only people who are monitoring her is ourselves, and we are the ones making the decisions regarding her blood sugars. The doctor who admitted her today, briefly in passing, told me that now is not a good time for her to be tube weaned........well.....before I give up all hope, I will wait to hear what Prof. Dunitz Scheer has to say. I just cannot believe that we could be led this far to get her weaned off her tube, and then it all comes crashing down. Anyway, on a positive note. We met an amazing family today from PE. Brene, Rob and Tayden, and the weather was really lovely. Tayden has just finished his program and has been successfully weaned. To follow his story, please go to www.tayden.weebly.com. Brene and Rob took us under their wing from the moment they met us. They showed us the ins and outs of the nearby area, and took us to the guest house where Michael and Bryce are staying. I was in a complete state today, with Gemma's blood sugars being low and she vomited again, they both just came to the rescue. Having followed their story with Tayden for some time, it felt like we have known them forever. Thank you guys, and thank you to Jill Long for all the advice you gave us whilst we were preparing for the trip. Her son is Jason, who finished his program a few weeks ago. To see his story please go to www.jasonsjourney.weebly.com. We won't have access to facebook until we get our own computer up and running, so we would just like to thank everyone for all the messages that we have been able to see via email. Just to end off with a funny: Gemma's new phrase is "What on EARTH, what are you doing?" Bryce often hears Gemma singing Do-Re-Mi so when he wants to hear it he says "Do raining" in his very cute Bryce voice. |
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