Gemma's progress continues to excite us. For a 2nd day she has gone without requiring a tube feed all day! She started her day with coco pops (but only wanted the chocolate milk and Debbie had to have the actual pops), then had a quarter banana with glucose water. The rest of the day was yoghurt and pediasure drinks. We are syringing the pediasure milk into her mouth and then she drinks it but at least she is drinking and not using her tube...Gemma was exhausted today and we have been told that for children learning to eat new tastes/flavours can be like sensory overload and very exhausting. We're so excited by the progress we just want Gemma to taste everything but are slowly starting to realise this might take a while. For now we must be content with the progress she has made and not try to overdo it.
Today we had a late start as both Gemma and Bryce in their own environments didn't want to rush out the door and so I spent some time with Bryce at the B&B while Gemma stayed in pajama's and watched some DVD's at the hospital. We've been so focused on Gemma and yesterday Debs and I were talking about Bryce and we felt really guilty that we've been dragging him out morning and evening and he hasn't had any choice or rest. Prof Scheer was saying that Bryce is the best thing for Gemma as he doesn't know any different and so doesn't molly-coddle her like the rest of us. The teeth marks on her testify to that! Debs will stay at the B&B a little later tomorrow and give Bryce a chance to do what he wants to do. Bryce has been an amazing distraction for all of us and kept us in good humour throughout our stay. He is talking so well As long as he has his go-gok juice and go-gok (le)bese he is happy. He has also developed a liking of cappuccino foam, which he calls boffee (coffee), and when I eventually say no more, as I would also like some, he shouts borty (naughty) daddy! He has also personalised Gemma's song and now he sings "Me no go home, me smack on the bottom - Tss, Tss, Tss!" We met up with Stuart, Emma and Mis after lunch today at a place called Schloss Eggenberg. This is a palace just outside Graz with beautiful gardens, a stately home and play park, etc. We had a quick look through the palace, walked around the gardens and then headed for the spielplatz which the kids loved. The curio shop was filled with all things peacock and this is all people could tell us about when we asked them what there is to do at Eggenberg. "There is a beautiful house, gardens and these big birds with feathers...what do you call them...peacocks? Peacocks, yes." Now we have gained a little understanding as to why our peacocks at Malealea are so popular. They're a real novelty here. We had a nice afternoon chatting while our kids played their socks off and then slept all the way back to the hospital. I have given up all pretences of being a real Deutschmann here. Twice now I have stopped someone on the street asking for diections in my best (or worst?) German only to be told in English "Oh, yes, you're close. Just over there!" Debbie who thought I was doing so well just burst into laughter! Going into our final week we are confident that Gemma will continue to improve in her willingness to eat. Tonight as she was falling asleep she said to me that she will take her tube out this week and throw it into the river (that is the tradition here). However. she wanted to know if her tube would float and where it would go to. I was stumped as to an answer
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Last night I lay awake for a long time, wondering how things will be when we get home, what if Gemma stops eating etc. I eventually got myself into a bit of a panic.....and then I just prayed. Prayed for a miracle, and today we witnessed just that.
It didn't come easily, but it is the end of the day now, and Gemma has, for the first time in her life (besides the days she has been in hospital with only a drip), did not have a single tube feed. She is currently on her overnight feed, but only running at 6mls an hour, so hopefully will be off that before we go home. Gemma and I had breakfast together, and I was firm in telling her that we would only go and play with Dad and Bryce after she had had breakfast. She ate three quarters of a yoghurt and 3 spoons of muesli. We both went to the guesthouse shortly after breakfast. We stopped at Billa on the way and Gemma spotted some ABC donuts, (Chocolate coated donuts with coloured letters scattered all over- yum yum), which we took with. Michael and Bryce both had a good night, which I was very glad to hear. They were waiting for us, so we could all go to the main hotel and have breakfast together. If I knew that was plan I wouldn't have eaten so much. It was great to all go together as a family. Michael took Gemma to the serving table and asked her to chose what she wanted to eat. She chose some melon, because she said that was her granny Dizee's favourite. We have set a rule with Gemma that whatever she choses to eat, she must eat it, even if it is a few bites. She managed to eat a few bites of the melon and tasted a peach slice. There is a great jungle gym just outside the hotel that we only discovered this morning. Gemma and Bryce played for a while. Just next to the playground there is a fenced off area with many geese and ducks, gaggling and quacking loudly away. I sat down on a bench nearby and was innocently looking in my bag for something, a food like sound must have triggered them all to come in my direction looking for their breakfast. Luckily I had a fence inbetween to save me from being attacked by a gazillion geese. Gemma and Bryce were playing on a roundabout, when she started saying her blood sugars were low, and we needed to test her. We thought she may just be feeling dizzy from being spun around. We tested her anyway, and she was 3.4 (which is fairly low). She (almost) willingly drank 50mls of Pediasure. She wanted us to squirt it into her mouth with a syringe. Fair enough, at this stage we don't mind how she receives the food, just as long as she gets it in. They were both showing signs of sleepiness, so we headed back to the guesthouse. We spent a fair amount of the afternoon trying to get them to sleep, but without any success. Gemma ate a whole croissant at lunch time, and drank a glass of milk - once again with a syringe. At about 16:00, she told us again that her blood sugars were low. She was 2.7. This is a great sign that she is starting to really understand her own body. She didn't want to eat anything, so here we used a new trick. We told her that she would either have to eat, or get a glucagon injection to raise her blood sugars. I know this sounds mean, as we could just give her a tube feed, but we felt that she had come so far during the day. We offered her a yoghurt, and said she needed to eat 10 spoons. She was reluctant in the beginning, but ended up finishing the yoghurt completely on her own will. At about 5pm, we eventually left the guesthouse, and Gemma and Bryce were asleep withing seconds of leaving. Gemma in her pram, and Bryce in his backpack. We had promised Gemma some pink nail polish if she went a whole day without a tube feed. We found a box with about 7 different colours that (if all goes well) hopefully we can give her one colour a day. We stopped off at a pub near the hospital, and had a delicious supper. Bryce, when he woke up, even had his fair share of real food. Gemma woke up towards the end and joined us. She took a potato off my plate. We have become strict about our rule of her having to at least taste what she has taken to eat. After much persuasion she tasted a tiny piece. It has been a long day of negotiating with Gemma, and we don't know if what we are doing is the correct way, but we feel if we don't do it this way, Gemma will continue worming her way 'out of eating.' I am sure we will soon find a balance. Gemma's sticker board stands at 8 Hello Kitty stickers and 12 Princess stickers. I forgot to mention a few days back that one of the nurses here knew Gemma wanted Cinderella stickers and came back the next day with a heart shaped container with 100 Cinderella, Snow White, Bella and Sleeping Beauty stickers. Our little baby is turning into a real little girl. Stuart and Emma have lent us a dvd player, Gemma is happily watching the Tweenies, and the computer is free so I have taken the gap.
Bryce has not been very well. He has woken up during the last two nights vomiting, and has now started with some diarrhea. Michael took him home early this evening, so I'm holding thumbs that tonight is a bit better. He is not eating much, but at least still drinking his milk. Prof. Scheer did take a look at him and didn't find anything wrong, that was before the diarrhea started, but we are in the best place if we have any further concerns. Michael had a good night with Gemma last night. Shoo, watching him entertain the children makes me tired myself, so he is feeling a bit worn down - I really hope he has a good night. He really is amazing at making them laugh by playing all sorts of funny games with them. I arrived with Bryce at about 09:30, to find an empty room. Gemma was at OT. Regina did the same as yesterday, mashing banana etc. Michael said Gemma wasn't as enthusiastic - the novelty had worn off quickly. We had Psychology at 11:00. Gemma created a scene of her home by using blocks and wooden trees, animals etc. There were a whole lot of little human figures which Gemma added to the scene - mom, dad, Bryce, grannies, grandpa's, Jax, Katie, Matty. Elke had a very good laugh when it came to Tony Macarony. I then explained that she knew another Tony, and to differentiate between the two, she calls the other Tony, Tony Pasta. She laughed even harder. Play picnic followed. This has become more of a social time for Stuart, Emma, Michael and myself. Gemma always ends up just doing her own thing, with not much eating involved, and Mia ends up sleeping. When Bryce is around, he eats all the chocolates and then wanders in and out of the room as he pleases. He occasionally gets reprimanded by Eva to stop climbing onto the chair next to the computer. We were told to wait around as there was a film crew (I'm not too sure, but I think it's for a German TV channel) that wanted to film the Deutschmann family. We still don't know why they chose us, maybe to show that people come from as far as SA for this program. They filmed Gemma talking about her stickers she had received. Michael was asked a few questions, and Prof. Dunitz-Scheer was in the room, doing her usual round, asking about Gemma's progress. They wanted to get a shot of Gemma eating or drinking, but she had just had a glass of milk and was not willing to eat under the pressure. Gemma has managed once again to go the entire day with only two tube feeds of 90mls each. We still have a week to go, so really hope that we will be able to drop tube feeds entirely. We will wait and see If anyone thought the smurfs were long forgotten, think again! This afternoon after music (or creative banging of the piano keys) we went back to the B&B. On the way we stopped in at the supermarket to try entice Gemma to pick out some food that she liked the look of. Searching for ABC soup for Bryce, we found Smurf soup. This is actually broth with pasta pieces shaped as smurfs. There is a big blue smurf on the packet which grabbed lots of attention. We cooked the soup and sat down to a dinner of soup, cold meats (of course, the staple diet here) and bread. The soup was a hit and Gemma loved helping to cook it whilst watching the smurfs get hot and float. When it came to eating time Gemma did well on her own. We then knocked under the table and told Gemma that it was the smurfs in her tummy telling her that all the other smurfs left in the soup wanted to go to their friends where it was nice and warm (in her tummy!) This worked amazingly and she promptly ate all the smurfs left in her, Bryce's and our bowls! It was amazing for us to see this change as she now starts to want to eat. There is still a fair amount of coersion required but most kids need a little pushing/encouragement to eat what we want them to eat.
After dinner it was time for Gemma to return to hospital with Michael and we headed off on the bus. The buses and trams are so exciting for both children and they always jostle over who can push the button to make the bus stop! It makes the trip back to the hospital exciting and not at all a scary prospect. Back at the hospital Gemma was not at all sleepy and wanted to play. She is incredibly good at finding anybody to talk to, play with or just stare at. There was a young boy doing his homework who Gemma just sat next to and watched for about 15min. She was fascinated by what he was doing. She talked about going to big school but I will not reveal the name of the school she mentioned (a debate continues within family circles as to this direction!) It is now just after 11 PM as I've waiting for all the teenagers to finish their messaging on this public computer. Fortunately the room is across from Gemma so I can keep an ear out for her. This keypad also has the Y & Z swopped around so after a sentence or two looking back often there is a Z instead of a Y and a little editing is necessary. We look forward to another good day tomorrow for Gemma and towards the weekend for a little time off We do apologise for not blogging last night. Our computer is finally Kaputt, and Michael waited till 23:00 for the public computer to become available and eventually gave up. (I would have waited longer - JUST KIDDING Michael).
The first activity of the day yesterday was swimming. After failed attempts at threatening Gemma that she could only go swimming if she ate something, she eventually saw another mother feeding her daughter some vanilla purity and allowed her to feed Gemma half a jar. It was incredible to watch. Michael and Bryce arrived just before swimming. It was only the four of us in the pool. We had a lot of fun together, and once again Gemma did all the swimming on her own. Bryce even swam a bit on his own with water wings. Prof. Dunitz-Scheer has been off, so Prof. Scheer did the rounds yesterday. After telling him we were able to drop a tube feed the day before, he was very impressed and said "today you only feed after play picnic." Michael and I are really losing it, if we don't blog every day we forget the minor details. Neither of us can remember what she snacked on to allow her sugars to be stable till play picnic. As soon as we arrived at play picnic, Gemma grabbed all the chocolate umbrella's in the room, sat down and opened them all up. I tried to obey the play picnic rules and not interfere, until one of the doctors looked at me and said "that is too much now." She did not eat any of them but at least all of us adults were able to enjoy chocolate umbrella's. Gemma allowed Eva to feed her about 10 spoonfuls of soup. Towards the end of play picnic, Gemma started fussing and said she wanted to go. On checking her sugars she was 2.1. Without trying to stress too much, I gave her her tube feed, and she calmed down a bit. The soup she ate, probably did not have enough carbohydrates to sustain her blood sugars, but once we know which kinds of foods she enjoys, we can always start adding glucose to her foods. Eva came to see us (Jill, I took your advice and asked her for a session). She gave us some very useful tips on how to handle our children, as she can see they both have us wrapped around their little fingers. One of her main pointers was that we try too hard to make them happy. We need to let them do things by themselves. They need to be proud of what they have achieved, instead of us continually encouraging them, and especially when it comes to food for Gemma. We will try and put some of her tips into action. Gemma had psychology at 14:30. I think the session was aimed at me more than at Gemma. Gemma was starting to fuss, and because her sugar was low before, I was starting to stress and tell Elke that Gemma needed to eat because her sugars were probably dropping. Elke let Gemma go at her own pace and take some Pom-Bar chips out of a packet and put them on a plate, without encouraging her to eat. She could sense that I was stressing that Gemma wasn't eating, and Gemma was sazing that she was tired and wanted to sleep. We ended the session and Elke told me I needed to relax and really try to not be so tense. When we checked Gemma's blood sugars after the session they were good. So Gemma was in fact just tired and really just wanted to sleep. It is extremely hard for us to just let go and put our complete trust in the professionals here. They really do know what they are doing. Elke came to sit and watch Gemma at play picnic today. She asked me if I wanted to come alone to psychology tomorrow - so maybe it really is aimed at the parents:-) We decided to go back to the guesthouse for the rest of the afternoon. We made a pasta dish and sat down together for the first time as a family. With the exception of Bryce jumping up and down like a monkey. Gemma let me feed her some of the sauce and towards the end of the meal, she ate about 4 pieces of pasta. She wanted to get up and play, but with some encouragement, she stayed at the table until her pasta had been chewed up and swallowed. It was great to just chill out together as a family for a few hours. Michael headed back to the hospital with Gemma at 18:30. She only had 2x90mls of food, and about 120 mls of polycose water in 24 hours, with her blood sugars remaining stable (minus the one low in the afternoon). Her sugars were good all night. Prof. Scheer has stopped all her morning tube feeds. This morning Gemma had Occupational Therapy at 08:10. Michael sat in with her. She first cut up a banana and then mashed it up with some cottage cheese and plain yoghurt. Michael said that she ate about 5 spoons. He was able to see a rise in blood sugars by her doing this. Before OT her sugars were 2.9, afterwards 4.3. I am sure she had a lot of fun doing this. Bryce and I arrived shortly before Logo. Gemma chose to take a packet filled with some food she chose from the snack drawer. Elizabeth said she ate a few onion ring shaped chips and drank some Pediasure from a straw. She says she does notice that Gemma doesn't swallow liquids immediately, but tries to keep the liquids in her mouth as long as possible. It is interesting to me that she prefers now to chew things rather than drink things, but maybe its just that the weather here is more condusive to eating than drinking. (Last night at supper though, she did enjoy a few sips of her dads beer). Gemma held onto her packet of onion ring chips till we got to play picnic. She ate a few more there, and handed the rest to everyone else. Gemma had her first tube feed for the day after play picnic. Her feeds are so small now that we don't feel it necessary to use the pump. We just do gravitational feeds with a syringe that takes exactly one minute. This is another major step towards making our lives easier. She had music therapy shortly afterwards. Brigitte played a few songs on the piano, and encouraged Gemma to play along with her, by just hitting any keys she wanted. It sounded great. It is now 3pm, Bryce is asleep, MIchael is reading and Gemma has found a few friends to play with, so still a good afternoon ahead of us. We really hope to try and keep the blog going as often as possible. It is just not as easy without immediate access to a computer. Lots of love to everyone. From a scary night to a great day. Gemma’s sugars were low when she went to sleep, so I gave her some glucose syrip and started her polycose feed. I checked her an hour later and her sugars were going up very slowly, but at least they were going up. After I finished last nights blog, I tested her and she was 1.7. I then realised her tube had been leaking, so she probably didn’t receive all of the glucose nor any of the polycose. With her sugars being that low I didn’t bother trying the glucose again, and instead opted for the glucagon injection. Within 10 minutes her sugars were 7.7. Gemma’s sugars were good the rest of the night. The first thing this morning, I opened a banana and just started eating it in front of her. She said she wanted some (thanx Jill for that advice). She took a tiny bite, but the fact that she asked for it first was a great step for me. I then ate an apple and the same thing happened. Michael and Bryce arrived just before 9am. At 9, we met with the team of doctors to analyse Gemma. We discussed the CGM, and the fact that it had been thrown away. Prof. Dunitz-Scheer told the team about our idea to trick Gemma into eating by using Dr. Tauschmann and the sensor. (Saying that she could avoid having it reinserted if she eats). Prof. Scheer, her husband, loved the idea. He really is hilarious, but practical at the same time. We brought up the fact that we do get nervous when Gemma’s sugars drop below 2.5. He said any caring parent would, but the fact that she has only had one seizure on us and that she has reached every possible milestone for her age, with many lows in her life should surely tell us that it is OK for her to go low occasionally. To allow her to get hungry we will need try and be accepting of this. Prof. suggested we drop feeds by another 10mls. After the meeting, whilst waiting for Speech Therapy we encouraged her to have a few bites of a chocolate chip muffin. She took a few bites and spat them out, but allowed us to break the bits into smaller pieces and she then ate about one fifth. I left her alone in Speech Therapy, and arrived at the end to see her sitting happily chewing a piece of apple. Occupational Therapy followed, and once again I left Gemma alone. On arrival, at the end of the lesson, she was painting a massive mirror with shaving cream, using her hands. It really looked like loads of fun. Play picnic followed. Gemma didn’t try anything. There was a cameram in the room, so of course she was more interested in his fancy camera. I don’t think play picnic is really about having to eat, but more that the children start seeing food as fun. The problem with Gemma in play picnic, is that she is concerned about others, so she spent most of the time handing out smarties to others. She did come running inside after handing them out, and shouted “Daddy, I did save one box for me.” Gemma’s blood sugars were high all morning, so we were able to only start her feed after play picnic. We arranged to go and have some coffee with Stuart, Emma and Mia. We found a great one that is reasonably priced. Unfortunately, Bryce broke not one, but TWO sugar bowls, so I’m not sure if we would be welcome back too soon. We do get along very well with Stuart and Emma, and are sure to remain friends. Gemma had feed due at 16:30. We could see she was getting niggely and were certain her sugars were low. I sat her down before I tested her, and told her that if her sugars were low, we would really have to consider a glucose monitor. She was 2.6, so we said she could try and eat something to help make herself feel better. She did not protest when I brought her a yoghurt, and proceeded to let Michael feed her about 40mls. We tested her 30mins later and her sugars had improved. We explained to her what had just happened and she seemed to really listen. This was the most amazing step so far. It so happened that we were able to drop an entire feed. She has therefore only had 270mls of food through her tube today. I know this sounds mean, but to feel hungry is the only way to get her to eat. Just before she was about to fall asleep she was tossing and turning, and really looking uncomfortable. I asked her if she was hungry. She said she was and asked for some milk. I gave her about 30mls, which she drank most of. For the first time ever, I actually heard her gulp when she drank it. She has only ever had teeny bits, just wetting her lips. Amazing experience Number 2!! For all of you who have believed in Gemma right from the start, and even when we were having doubts that she could do this, we thank you so much. I know Gemma is still a long way from eating a whole meal, but I think today was a major breakthrough. We continue to hope that each day gets better and better. As for Bryce, he is still enjoying his time. He gets very excited to go back to the guesthouse to see his friend “the leetol bebie porsie” the Shetland pony (little baby horsie). He constantly reminds us of home ( Until tomorrow, have a great night. Michael’s idea of exchanging the cot for a bed was brilliant. Gemma is now happily fast asleep in her own bed, and I am in my own writing today’s news. Now that we are more comfortable in the hospital, I think Michael and I really will be fighting about who stays in, to avoid the dreaded hill.
Bryce and I arrived at about 09:30 to find Michael looking a bit worried. He told me he had not checked Gemma in the early hours of the morning, and she had woken up with a 2.2 reading. He did a great job of getting her sugars back up by giving a 30ml Polycose bolus feed. Gemma did not try and eat anything for breakfast. Dr. Tauschmann came to talk to us about the CGM. Gemma was adamant that she did not want a new one inserted. We said that if she was ready we would let him know, only to discover later that the night nurse, who took the sensor out last night, may have thrown it away – an expensive mistake. Now there is no longer a choice, but maybe it’s for the better. Gemma really seemed quite traumatised about the whole idea. Before we knew about the sensor being thrown away, we used the situation to our advantage. We told Gemma that in order to avoid having it reinserted, she would have to eat a lot so we would know her sugars would be stable, and there would be no need for the CGM. She ate a whole finger biscuit. Gemma had speech therapy at 11:00 with Elizabeth. I stayed in the room for a few minutes while she had her 11:00 feed. The first exercise was to blow a table tennis ball from one subsection to another in a little container. I left when the feed finished and returned near the end of the session. There were many cards on the table with many animals pulling different facial expressions. I gathered that Gemma had to imitate these expressions. All this was to evaluate how strong/weak her muscles in her face are. Elizabeth said that Gemma is fully capable of eating (as we know), the reasons must be psychological that she isn’t. At 12:00pm was play picnic. Bryce was sleeping, so Michael stayed with him. Gemma wasn’t interested until she saw a baby playing with mashed potato. She wanted to do the same. I found a plate that was the same, and she spent a few minutes mooshing it up with her hands. She licked a bit off and even allowed me to put some in her mouth. Stewart, Mia’s dad, rolled bits of spaghetti around his finger, and Gemma happily chewed them off his finger. We were shortly handed some information sheets stating that parents should be passive in the play picnic sessions. We should do and say nothing, unless our children ask. Stewart, Emma and I, realised we had failed play picnic. We know now that adults must be “seen and not heard!” On a serious note though, it may have been more productive if we had received that information on the first day. Michael and I had lunch in our room, and once again Gemma (with a bit of encouragement) ate a few strands of spaghetti. Today has been rather wet, so we were contemplating staying indoors for the rest of the afternoon. The children were getting a bit niggely, so we once again coerced Gemma into eating a bit. We said we would go and find her some Cinderella stickers (for her poster), if she ate a handful of chips. She really did eat one of my handfuls (and for those of you that don’t know me – I have big hands, even bigger than Michael’s). We headed off to find some, but Gemma fell asleep in her pram shortly after we left. We had a nice walk anyway, but didn’t manage to find stickers – maybe tomorrow. Gemma has eaten a fair amount today, but her blood sugars have been low. (4 readings below 2.5). We can’t expect her sugars to be stable on 400mls of Pediasure per 24 hours. In that regard, it has been a very stressful day, and we feel very pressurised for her to eat something substantial so her blood sugars may remain stable. We have tried not to push her to eat and leave it in her hands. This backfires, as she goes and finds friends to play with and is totally happy with not having to eat. She is just not willing to try, unless she is given a little push, and we don’t feel this is very healthy. She still has two weeks to go, and we believe that she can do it. Thank you again to everyone for all the words of wisdom and encouragement. We appreciate it!!! |
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