I have to make this blog a quick one, as I do not have much time on the computer. This may also be our last blog from Graz, but if we get near a computer we will try update.
WOW!! What can I say!!! What a tough, but amazing experience. We all went home to the guesthouse yesterday. We had to move from one room to another, and shortly afterwards Gemma said she wanted a vanilla yoghurt. She hardly needed any help from either one of us, and ate the whole tub. Later in the afternoon, she ate a finger biscuit (also by choice). We had a meal together, consisting of ABC soup and pasta. Gemma ate a fair amount of it. Just before dinner she said she was feeling dizzy - it was the first time we had tested her since the morning. Her blood sugar was perfect, she may just have been tired. Michael has been giving her all her food for the last few days, this time I chose to sit with her while she had her 'before bed' milk. It was not a struggle as such, I just asked her to take a sip for a different person, i.e one for Katie, one for Matty, one for Josh, one for Daniel, etc, etc. and she eventually finished it. She woke up at about 5am and needed the toilet. Her sugar was a bit low, so I asked what she wanted to drink. She didn't respond to anything I was saying, so Michael stepped in and gave her the water. She drank it easily. Michael and I realise that we have to work closely as a team for the next few months while she is still learning to avoid stress. We went to the hotel for breakfast. Gemma really likes the taste of Vanilla, so she chose to have a yoghurt we brought for her and nothing else, but that is absolutely OK with us. We had arranged last week that Gemma would come in to the hospital this week as an outpatient, but we are waiting to speak to Prof. Dunitz Scheer about possibly not doing so. We are really happy with how things are, and would like to spend the last three days enjoying our time together. We will wait and see what she says. We are both feeling very sad to be leaving and to have to say goodbye to all the people that have had such a positive influence on Gemma. We are even sad knowing that we will only be climbing up the 'dreaded hill' 3 more times. Graz has been our home for the last three weeks, and I can see now how Jill and Brene were sad to leave as well. We will also do our best to continue Gemma's story when we get home. For now, we are sending love to you all and a massive thank you for all the
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Progress continues to be good. Gemma is now totally off the tube and she is starting to say she's almost ready to take it out and throw it in the river. We are getting into good habits with her in terms of morning and evening meals. Before she falls asleep at night she knows she has to drink glucose water and this sees her through the night without any risk of glucose going low. Also as soon as she wakes we talk about breakfast and she gets to choose from a couple of options as to what she would like. Feeding battles are improving and she really is starting to enjoy the actual process and taste of eating.
This morning Gems and I went up to the B&B to see Debs & Bryce. We arrived as they were returning from breakfast. We were due to see another room in case we extend our stay as we have to move to another B&B but the room was occupied so will only do that tomorrow. Gemma had a Nutrini shake for breakfast and then a yoghurt for lunch. This afternoon Andrea, an elderly lady we met at Malealea, came to visit us at the hospital. She lives in Germany but is from Graz and has 2 sisters living here. We went to visit one sister, Renate. Renate's husband and son re-condition old Vespa and Honda motorbikes as well as Haflinger military vehicles. This was fun for the kids to see the bikes in parts and also to play on the Haflinger jeeps. Starting the Vespa with Gemma and Bryce revving the engine and pushing the hooter was the highlight of their day! We had a nice afternoon with them and the kids entertained as usual. Gemma had to eat a yoghurt at their house but with everybody trying to watch her this was not easy. I took her outside and she finished it off in about 60 seconds! Renate brought us back to the hospital and then we played a little with the kids. Unfortunately the sensor is giving hassles as the first 3-day cycle is over but we cannot seem to reconnect it. If we don't get this right we will have to wait until Monday for Dr Tauschmann to return to assist us. As we were this afternoon we missed picking up dinner so I popped out to get a take-away from the pasta restaurant. The four of us sat on the bed eating pasta and Gemma really got into the pasta and ate alot. This was great to see as up until now she has only wanted yoghurt, milk and water. It was nice to see her eating "real" food. This has alot to do with not pushing her as we did not invite her to join us on the bed. Debs and I just sat down and starting eating and she climbed up and just starting helping herself. After committing ourselves to staying another week longer than originally planned we are now starting to question this decision. There has been a massive turnaround with Gemma regarding her willingness to eat and Debbie has also relaxed a lot and this is having a positive effect on Gems. Hopefully the tickets haven't been changed as yet and we'll be able to still return home on Thursday. This still gives us 4 days of therapy and 4 days with Gemma out of hospital to adapt to a more normal routine. I'm sure this will be enough if she continues to improve. We were very keen to take Gemma to Salzburg to see where the Sound of Music film was made and also to do the whole tour but have also realised that she will most likely not remember this. In addition, it is not worth the cost of changing tickets and I'm sure she will be more excited getting back home to see everybody and show how well she is doing. As 2 nights ago, it had been decided (by a few of the doctors, Michael and myself) that it is better that I don't stay in for the nights here in the hospital. It hasn't been easy to step aside, but I have noticed a complete change in Gemma when I am more relaxed and not involved in feeding her. Michael has been amazing, and remains calm and composed when Gemma tries to avoid eating. Today Michael did all Gemma's feeds, and I sat and just held her on my lap (as a mother should do).
Michael is busy reading a book (well, making up a story as all the books are in German) to Gems and Bryce. Bryce had a long sleep today, so I will take him back to the guesthouse a little later. Michael and Gemma were very excited to tell us this morning that Gemma woke up at 03:30 this morning and said she was hungry and wanted some yoghurt. Michael, feeling very sleepy, first tried to convince Gemma to wait until breakfast - but she insisted. She ate half a yoghurt, within minutes. WOW!! Bryce and I had a lazy morning lying in bed, and arrived quite late this morning. I assumed we would find the room empty, as I thought Gemma had OT at 11:00. Michael also thought OT was at 11:00, but it was actually at 9, so Gemma missed that this morning. We all went to play picnic together. Our last one with Stuart, Emma and MIa. It was only the 7 of us there. Gemma asked Michael to open up a sucker for her, and for the first time in her life, she sucked an entire sucker until the stick was empty. This kept Gemma's blood sugars stable for a while. The monitor is really fantastic in this regard, as we can see exactly what effect certain foods have on her blood sugars. We are looking into getting her one when we get home. They come in different colours, so she has already told us she wants a pink one. After a sad good bye to Stuart, Emma and Mia, we headed off into town to try and find some Hello Kitty suckers Eva has told us about. Gemma was looking tired, so we said she needed to have something to eat before she fell asleep. While we sat waiting for the tram, Gemma chose to have a vanilla yoghurt (her favourite flavour at the moment). I held her gently on my lap and chatted to her while Michael fed her spoon after spoon, until it was all finished. It really was a special moment for me. We headed into town, and looked in a few shops. Gemma was in the backpack, as Bryce slept in the pram. She noticed a little playground, which we took her to and she spent some time playing there. It is really beautiful in the streets of Graz, as all the Christmas lights have been put up. There are Christmas markets near all the tram stops. We were still on a mission to find the Hello Kitty stickers, so were not expecting to see all of this. We arrived at the Hauptplatz Christmas market. The first stall we passed, was selling the most delicious waffles. Michael and I bought one each, and Gemma decided she wanted one after seeing them. While Michael was buying hers, she spotted a merry-go-round and really wanted a ride. We told her after eating her waffle, she could go. She willingly ate half of it, the other half we kept for Bryce. From a distance, it looked as though the price of the merry-go-round was 2cents..........what a bargain.......we began thinking that we could bring Gemma and Bryce every evening for hours of entertainment. However, when I saw the look of shock on Michael's face when he was paying, I realised it was in fact 2 Euro. Luckily Bryce was still sleeping, and Gemma was only allowed 1 ride. We got back to the clinic about an hour ago, and Gemma has just finished eating a croissant, and Michael will try and get her to drink some glucose water before bed to help keep her sugars stable for the night. She is off her night feed tonight for the first time since we arrived, so we hope and pray that all goes well. If so, she will be 100% off her tube. There have been ups and downs for the entire three weeks, so we still feel it is the right decision to stay longer. We need to know that she will be fine on the flight home, without needing a tube feed. The last two days have been an emotional roller coaster for myself. Michael has been fantastic, and has been by my side every minute, as well as taking special care of Gemma. It has been wonderful having Bryce with us, so I have been able to focus on him and just spend some quality time with him. All his funny sayings and actions have helped keep us in high spirits. Thank you again for all the messages and words of encouragement. This has really helped us get through the tough times. We hope you all have a wonderful weekend. Lots of love. The morning started well and Gemma drank, with the help of a syringe, 170ml of Nutrini (similar to Pediasure, but with way more carbs) and this saw her through to lunchtime. This was fantastic as it meant we had a few hours where she could just relax without us pressurising her to have to eat. Gemma lived up to her promise about breakfast and so Eva arrived to take her swimming but then realised that the sensor cannot "swim" without being detached and Gemma wasn't too keen on us fiddling so plan B was derived. Eva took Gemma to Billa to buy an ice-cream. This was a great outing for Gems and she thoroughly enjoyed going out all by herself.
Gemma had a good session with Elisabeth and then play picnic was fairly successful in that Gemma played with some meat and had am few chips. After play picnic we went to the local pub to have lunch with Stuart, Emma & Mia who return to the UK tomorrow. We have grown very close to them and it will be very sad to see them go. They have been our shoulder to cry on and very supportive of us and we've had a great time with them. They will return next year with Mia as she was not ready now to be weaned and instead they focused on speech therapy, etc. Of course, they leave with all their DVD's and DVD player they've lent us so we'll have to go back to entertaining the kids in the evening... While we were at lunch Gemma went low again and refused to drink anything. This again became a battle of wills as we are determined not to use the tube but we need to get Gemma to want to drink on her own as well as to inform us when she feels unwell. This is hard and it seems it may take some time. We did manage to get her to drink and she always recovers so fast and for this reason I do not think that any damage is being done as she is chipper again in 2 minutes. However, this process is extremely diifcult for Debs to witness or allow to happen. She said to me tonight that it feels like she has spent 3 years looking after Gemma only to watch her kill herself. I think the terminology is a bit extreme but I do understand how she feels. There is a strong battle of wills between Gemma and Debs as Gemma sees Debbie as the person who has looked after for all this time and now she is trying to gain control for herself and this is difficult for Debs. Suddenly feelings of insufficiency, failure, etc. are cropping up where this is not even the case and Gemma is just looking to find control of her own life. At the Doctor's meeting on Tuesday I said that I was so frustrated that the previous evening I felt like jumping off the balcony. Suddenly everyone is looking at me in a new light. The psychologist today even cornered me in the passage for a little chat to make sure I'm ok. Of course, it was said in jest but it's nice to see people here are very conscious of all the parent' feelings and want to make sure that all parties, both parents and children, are progressing. Tomorrow is officially the end of our 3-week programme and Gemma has progressed remarkably. We will be off the night feed by Saturday and Gemma has not had a tube feed this whole week. Our plan is to leave the hospital on Sunday and then we will stay in Graz for another week at the B&B to see how Gemma progresses in another environment. We're not ready to take her home just yet as the feeds are still a little difficult in terms of a struggle. I think the time out of the hospital will be good for Gemma and we will focus alot of the time and food preparation, shopping, etc. so I'm sure she will continue to make good strides towards self-management. Bryce and I only arrived this morning at 11:30. Bryce woke at 06:00 and asked for a juice go-gok, and then went promptly back to sleep. He then only woke again at 09:30. This was great reading time for me.
When we got to the hospital DEbs and Gemma were not in the room. I glanced at the chart of glucose readings for the night nervously. I think this is the first thing we do when we arrive after a night away as it is outside the room and therefore we can see the pattern before entering. Gemma was a little low early as has been the pattern but then disaster seems to have struck. There was glucose testing being done by someone else. This was not Debbie's writing - where was she? As it happened, Gemma was supposed to have swimming this morning. She refused to eat or drink anything for breakfast. Debs then left and asked the nurses to try to get Gemma to have something. They did not manage either and when Debs returned Gemma was terribly low and Debs gave her glucose through her tube. I met Debs and Gemma at play picnic at 12:00. Debbie was still upset from the morning episode and so when Gemma starting going low in play picnic Debs became upset again. Eva then asked Debs to leave as Gemma will not eat/drink while being pressured to do so. After Debs had left the room Eva came to sit with me while I tried to get Gemma to drink some glucose water. She had tiny sips and then stopped. Eva then offered her juice which she had, and then vanilla custard. Gemma then promptly ate the whole bowl of custard. Somehow we need to allow Gemma to do this alone and also keep track of her glucose. The doctors here have told us that for Gemma to go low inflicts less damage then somebody drinking alcohol until they are drunk and pass out with memory loss. This is so hard for us to accept as we've been conditioned for 3 years to not allow Gemma to go below 3.5. Now we're having to go way below that in an attempt for her to learn firstly how the symptoms feel, and secondly to learn to self-regulate herself. I think this is incredibly difficult for Debs as sh has a built-in sensor that alerts her when Gemma is low and now she has to find a way to turn it off inside her head...Debs now has to stop being Gemma's nurse and to be Gemma's mommy and allow Gemma the space to learn to nurse herself. This is not easy. I keep telling Debs that she's like the tourists we get at Malealea who ask for road directions and drive times to another city in SA. When we tell them the drive time they never believe us and hold up their fingers and say, "but it's only this far!?" All you can do is shake your head and leave them to drive in the dark when they decide to leave for East London at 14:00 because it can't take that long...I'm sure the doctors here feel the same way. The rest of the day went fairly well. Gemma drank some glucose water, ate soup with one of the nurses and then drank another glucose water glass before sleeping. Dr Tauchmann came and put the new sensor in today. Even though Gemma adores him, putting pins into her is another matter and this was a struggle. The first attempt failed but at least we are up and running with the sensor. This helps us to have a real time idea of what her blood glucose is doing without having to prick her finger. Even though the readings are a little different the pattern is the same. The sensor is in the subcutaneous tissue in her tummy while the prick test is her blood so the subcut reading is usually 15min behind but the pattern is the same. Debs was also instructed to take the night off by Eva as she thinks Gemma knows how to manipulate her and she needs a break from it. We've been doing 2 nights in, 2 nights in luxury so Debs is pulling a fast one here as this should be her second night! Gemma was asking me after her shower tonight before bed why I wasn't putting on pyjamas. When I told her I hadn't brought any because I was going to sleep with Bryce tonight, she simply told me I could wear a pair of hers if I wanted to! I have tried them on before (don't ask) but she seems to forget that it was somewhat of a tight fit... Just before falling asleep Gemma was telling me that she's now a big girl and she will go swim all by herself tomorrow with Eva after eating her breakfast. "I a big girl now 'cause I've been growning (growing) and growning and growning up all by myself." You wouldn't believe it! This morning when Bryce and I arrived, Gemma was in the shower. The shower head adjusts in height, and she is very happy to shower all by herself. Michael was looking a bit down in the dumps, and as you would have seen, yesterday was a tough one. We knew we would be meeting all the doctors at 09:00, and we were adament that we would walk in there and tell them that we didn't think this was working etc. etc. etc. We were both in quite a state.
When the doctors called us in, before we could open our mouths, Prof. Dunitz-Scheer started saying how wonderful Gemma was progressing. We then began our story, and she cut us off by saying how wonderful it is that Gemma is behaving this way. It is all part of Gemma's plan. After about 30 minutes in the room, we once again felt much happier and positive that Gemma will still be eating soon. The program officially ends on Friday, but Gemma can still stay in the hospital until Sunday. We were advised by both Prof. Dunitz-Scheer and Eva that we should try and extend our stay for another week. She wants us to be comfortable with Gemma in our own family environment before we consider leaving. We are thus in the process of trying to change flights, etc, and will probably be coming home early December. The rest of the day went fairly well. Shortly after the meeting Gemma had OT. We offered her a range of foods, and she didn't want anything, so we gave her some glucose water. She accepted about 50mls with a syringe. She cooked playdough in OT. I left her for most of the session and picked her up before play picnic. Eva instructed all of us to ignore Gemma and not try and play funny games with her. She wandered around the room picking up a few pom-bar chips off the ground and eating them. I can really see that Eva's theories do work. She tried drinking some juice, and even tasted a bit of soupie stuff - without being prompted. It was quite hard not to look at her. We need to master the art, of looking at her out the corners of our eyes. Play picnic was just too much for Bryce, as he fell asleep on the bare floor with a sucker in hand. Brigitte came to our room for music at 13:30. We could see that Gemma's sugars were going low and offered her some glucose water just before Brigitte arrived. She blatantly refused, Brigitte tried as well and said she wouldn't start playing until Gemma drank her water. She just ignored her and lay down. Within minutes she was fast asleep. On checking her she was 2.3. Gemma seriously needs to start realising for herself when she goes low (which we know she can understand, as she did this past weekend). It was extremely hard to see her going through this, but we only gave her feed through the tube once she was asleep, so she did not see us doing it. We woke her at a about 16:00 and took her and Bryce to the shops. Gemma wanted a pretty pink belt, which we found quite quickly. We will only give it to her at a later stage. They were both very interested in a red car (one of those that you put money in and then it moves up and down). We made a deal that after supper they could have a ride. The only real child friendly place we could find in the area was McDonalds. Michael got some chicken nuggets and milkshakes for the children. A deal was made with Bryce that he would have to eat his nuggets before milkshake, which ended up being a bit of a struggle. Gemma put a whole nugget in her mouth and chewed it for a while, until spitting it out. (This was not part of our deal). She took about 2 sips of milkshake. Eventually after getting her to rather drink her water, we took them on the car. (I would most likely say that they got their own way ........ again). It does, however, make us happy to see them happy, so this is all very difficult. When we arrived back, Gemma found Dominique to play with. He was showing her some games on the computer. I think he soon found interest in a boy his own age, because when I went to find Gemma a while later, she was sitting on her own playing with puzzles, whilst Dominique was at the computer with another boy. Gemma didn't seem upset or anything. She is keeping her options open, I think her true love in the hospital is Dr. Tauschmann. Whenever he enters the ward, she follows him around, and blushes when he talks to her. On that note.......he has found a new sensor, so Gemma will be having receiving a new monitor which we do think will once again be very helpful. Gemma and I, once again had a bit of a fight to try and get her to drink her bedtime milk. She drank about half and then we both gave up. So until tomorrow, good night. Today has been one of the most psychologically draining days of my life. I'm so tired but sleep eludes me as I analyse over and over this process that we are taking Gemma through, the progress we have made and now the brick wall we have run into. That brick wall goes by the name of Gemma who today decided she didn't want anything. Done! She refused to eat or drink anything and no amount of talking, threatening, smacking (not sure if I should include this), etc. could change her mind to this decision. It was a two-sided struggle the whole day which has left us all exhausted.
However, there is an upside. We managed to get through the day without using her tube when she was awake (we did a feed this afternoon while she slept as we didn't want to wake her as she too was exhausted.) This did take the greater part of the day as we did 8 liquid syringe feeds into her mouth in small quantities until she again refused. Also we had great counselling session with Eva at play picnic where she took over the situation with Gemma, who was terribly grumpy, and told us all to ignore her unless she eats. This is such a hard thing to do and Gemma, as you all know, is such a vibrant character and likes to entertain. She found this hard and although there were no visible results in terms of eating I think we are starting to cross some bridges with regards to her behaviour around food. We have settled on a plan of giving her only glucose water if she asks for water, as this is all she asks for now. Prof Dunitz says this is no problem and this might be necessary for a few days in order for her to get hungry again. So we'll see how this works out. Again I think this has been our fault as we were worried about the nutrition side and not focusing enough on the fact that Gemma has to get hungry for her to want to eat willingly. The downside of this is that, miracles aside, we're starting to consider the very real possibility of having to stay in the hospital longer. We are due to "graduate" on Friday but we have decided that unless Gemma is really eating without so much coersion we will stay in the programme. We had fortunately booked our return tickets for the 25th so we have some days to get this right. This might just jeopardise the trip to Salzburg that we'd hoped to make to take Gemma on a "Sound of Music" tour. On the other hand it may also inspire her... Amazingly through all this turmoil and conflict with Gemma she remains content and loving. She has a friend called Dominic who is here with a colon problem. Dominic plays with Germma, teaches her to draw, reads her stories, etc. He even came back today from a weekend away with a deer teddy! Bryce is not doing too badly either on making friends. Whichever play park we go to the ride7activity of choice is determined by the precence of a girl on the swing, merry-go-round or slide. He has developed a liking towards blondes and it has been so funny to watch him totally engrossed in staring at these girls. There is only one thing that distracts him - if there is a bractor (tractor) or a digger in the sand pit. Then he is content and cannot be separated from these items, sometimes to the agony of the little owner. The children's characters continue to develop and they are both such strong individuals. It has been a wonderful experience to spend so much time with both of them even though the circumstances have not always been idyllic. We hope that the next few days will be a turnaround again for Gemma and that we can get on that plane on the 25th.
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