Gemma woke this morning after a good nights rest a little grumpy and saying she was tired and wanted to stay in bed. So we did! I fetched a variety of breakfast things from the kitchen here and set up an imaginary table on Gemma's bed hoping she would try something. No luck there. We played a couple of games on the laptop in bed and just had some downtime together.
Debs and Bryce arrived and suddenly Gemma wanted to go shopping! Unfortunately all stores, with the exception of bakeries, are closed on Sundays so the toy shop we wanted to visit was closed. Instead we opted to go to the Frida & Fred children's musuem. It's kind of a water awareness concept aimed at 3-6 year olds aimed at raising awareness of the cycle of water in nature. So the kids are dressed in rainsuits and wellington boots and encouraged to investigate the various scenes. This involves paper flowers in water, watering cans that can be filled and then used to water plants, building your own mini waterwheel, fishing for magnetic fish. cooking, building waterways with sand and water, etc. Great fun for the kids and well developed. After several hours Gemma was due for a feed so we sat her down, hauled out all the goodies we had assembled for lunch and she showed absolutely no interest. This then became a battle between her wanting to play and us wanting her to eat. After a long struggle we settled on a compromise of 3 chips if she wanted to play after her feed. It's becoming so frustrating for us that she will not even attempt food or even want to hold it or pick it up without trading her off for something else like playtime, etc. What other kid doesn't want to eat chocolates, chips, etc.? Gemma is now down to 100ml feeds four times a day plus a constant night feed of 15ml/hour. This means that she is now getting less than half the volume she was getting at home over a 24 hour period. At some stage this has to start working and she must start feeling hungry! We're keeping a close eye on her regarding glucose levels and she is doing well. Tomorrow we start with consultations again so this week will be more food-focused from the practioners so we hope to see results. Debs has gone back to luxury for a second night as I was too lazy to walk the hill again! However, I have secured another bed for our room to replace the cot tomorrow so sleeping on the same single bed as Gemma will be unnecessary (and more comfortable). The constant glucose monitor sensor in Gemma's tummy ended its 3-day lifecycle today which was a pity as we have been getting to rely on it just to give us peace of mind during the night without having to prick Gemma's fingers. We will try to get another sensor inserted tomorrow as it has been an interesting learning curve regarding the patterns her body follows relating to feeds, etc. We have enjoyed the time off this weekend and look forward to a successful week of eating! Whilst Gemma continues to lose weight and looks more and more like her mommy, Bryce continues to eat everything he can find and looks more and more like his daddy! Thank you to all of you for the continued support and hold thumbs for the week ahead...
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Being Saturday all the doctors are off and we get to have a free day after rounds this morning. Of course I (Michael) was late this morning and received a phone call, in the middle of strawberries and yoghurt, to find out where I was..."we're waiting for you..." I rolled down the hill, missed the bus and walked to the hospital, which takes about 15 min. Bryce sang Do-Re-Nin all way interspersed with "where bus now?" We then hung around and played in the park (with aesome slides, jungle gyms, etc.) outside the clinic until we could pick up Debbie's lunch (this way we could have a picnic somwhere later in the day and save some shekels).
Debbie left the planning in my hands so we set off for the tram stop. We stopped in at the supermarket and asked Gemma to choose anything she wanted to eat. Gemma picked out some fairy chocolate eggs and a lunch packet with a roll, chocolate, coke and toy in. Bryce wanted to take everything else in the store!!! Some trams have stairs and most have pram/wheelchair access. As fate would have it the 1st one that came along had stairs. We decided to wait for the next one and Gemma then asked for her lunch packet. She took her roll out and started to tear off bits of the meat, roll, etc. We sat through about 3 trams not wanting to disturb this progress. I'd picked out a children's interactive museum which I thought would be nice to visit. We headed into the city and then walked along the Nur River for about 15 min and came across the most amazing park with an unbelievable assortment of jungle gyms, slides, wooden structures, etc. Children heaven...Bryce just about jumped out his backpack in his excitement "me off, daddy...play now." That was it for a couple of hours whilst we watched the kids play. We'd been waiting to hear from Stuart & Emma (Mia's folks) who were going to join us during the day. Mia had a poor night so they were waiting to see if things improved. Afterthe park we walked back along the river and arranged to meet at a floating cafe on the river. Gemma & Bryce fell asleep on the way so we had a little time to ourselves over a cappuccino. It was nice to sit and relax while they slept and talk about Gemma's progress. Stuart & Emma joined us a little later and we had a great afternoon chatting out of the hospital environment. Gemma earned another sticker on her chart tonight as she ate 5 chips on the walk up from the tram stop. Her clothes are hanging a bit now and she has lost 1 kg since we started the programme. This is all in line with the plan to make her hungrier whilst still keeping her in the safe zone of her glucose levels. Prof Dunitz-Scheer warned that this would happen as she said all the HI kids they've weaned are always overweight as their feeding schedules always overdo itin order to keep the kids glucose levels high. We've opted for a 1-night in hospital, 1-night in luxury plan so Debs has gone back to the B&B tonight. Gemma's had a brilliant day glucose wise and the willingness to want to take food is improving. I think we're getting the weaning right now and have reduced her night feed tonight to 15ml per hour so this should also make her hungrier tomorrow. In order to master a language it is imperative to start with the simple, everyday words and then say them repeatedly in the right context in order to get the pronunciation correct before moving on to the next word/phrase. I have decided to focus on "ëin bier, bitte." I suspect this mighttake a while to master fluently! Prost! Oh my gosh. I can't believe it! I have spent about two hours of the day writing today's blog and somehow I have just managed to delete the entire page. Luckily I had a good nights sleep last night and will try to do it again. I say it again OH MY GOSH!!!!!! Today is not a great day for the adult Deutschmanns. Michael was halfway to the guesthouse and realised he didn't get the key from me. (Notice how I don't take the blame for that LOL)
Thank you Michael for the kind words last night, but we both know that if it weren't for you standing by my side each and every day, I would not be able to do this. Thank you for a great rest last night - it was wonderful. Bryce and I had a lovely walk to the guesthouse last night. I even "enjoyed" climbing up the dreaded hill. It was lovely to be out in the open. I made Bryce some ABC soup for supper, which he thought was great. He especially loved eating the B's for Bryce. The one advantage of having our two children in seperate locations is that Bryce eats well when he is alone. He gets so used to seeing us mix Gemma's pediasure bottles, that all he wants is a bottle (a gogock, he calls it), when they are together. I last remember reading Bryce a story in bed at about 19:30, and must have fallen asleep very quickly, because when I woke up it was 06:30am. WOW, what a treat. Breakfast is served at the main hotel, and Michael had explained to me how to get there. Giving me directions though, is like telling a baby to make it's own bottle. One has to walk through the woods. It is such a beautiful time of the year here. The paths are covered in a thick carpet of leaves of all shapes, sizes and colour. Bryce loved shuffeling his feet in them. Luckily he insisted on us packing his favourite red gumboots. After walking for what seemed like ages, I knew I was lost. I kept asking Bryce if we were going the right way (note to self, to never get directions from an almost 2 year old). We started heading back on two very empty stomachs. Luckily we bumped into one of the fathers of Gemma's peers. He lead us in the right direction, and 30 minutes later we were on the same path home, but this time with full bellies. Knowing that we were nearly out of Maizena (which we add to Gemma's feeds), I popped into Billa (a mini pick n pay) to get some. To cut a long story short (I had told the long one in my blog that got deleted, but maybe somebody was trying to tell me that that story was boring), a customer helped me find some that was hidden behind another box that somebody had dumped on the shelf. I was very glad to have found it, because when I got to the hospital, Michael had just finished the last bit, and by finding it, this helped solve some foreseeable stress. (I think the old story sounded better, but I'll leave it be). Michael was alone in the room when we arrived. He was in good spirits and proud of himself, as Gemma's sugars had improved since he had given her the glucose syrip and had remained stable the entire night. He had left Gemma in the Occupational Therapy on her own, by choice. She proudly told us, when we fetched her, that she had played "cooking" with play dough. Many children who refuse to eat, are often sensitive to touching and feeling. I think the idea behind OT, is to get children to become accustomed to as many different textures as possible. The team of doctors (consisting of about 6 different doctors) did their rounds shortly after this. Together they assess every child individually, discussing progress, ways forward etc. Prof. Dunitz-Scheer asked how her eating was going. We told he she hadn't tried much in the last 2 days. She said that some children actually need to have a store of sugars/carbs to make them feel hungry. She decided to increase the volume of feeds slightly again. Gemma is now on 4 x 150mls of Pediasure with added Maizena. This is a HUGE improvement from when we arrived. At home she was on 5x 225mls of Pediasure. Now that we have come to a level where she is getting less food, and her sugars are stable, hopefully the eating will start to come naturally. We will wait and see. I forgot to mention yesterday, (especially for Brene and Jill who know Prof. Dunitz-Scheer), she got her pointing finger stuck in a big metal door. Her finger is now broken and she has to wear a big plastic sheath over to help it heal. Owwweee!!. Gemma was more interested in her finger yesterday at play picnic than the food. At 10:30 Gemma has Psychology with Elke. She was once again very comfortable on her own, so I left. When I returned to start her 11am feed, Elke asked if I could stay. The language barrier is a bit difficult, and she couldn't quite hear all that Gemma had to say. On testing her (to find a very good blood sugar reading), Elke was interested to know if it was painful etc. While we were talking, Gemma was pretending to test herself, so the remainder of the session revolved around Gemma testing Elke, and a big monkey in the room and vice-versa. Elke said it was good to see that Gemma sees her testing kit as a plaything and not just something that causes pain. Elke said she would join Gemma for play picnic next Thursday. Play picnic was interesting. A few of the doctors joined in. Gemma sat with us for a bit, and then wandered around the room. One of the doctors offered her a spoon of pasta, which she happily accepted. She had a few more after that. We sat chatting to a British family from Sheffield, whom we have made friends with (Stewart, Emma and Mia). They are outpatients, so we only see them at play picnic. Mia is about 30 months old and was born about 8 weeks premature, weighing 900grams. She now has great difficulty swallowing, as there is a constant build up of mucus in her throat. Her parents have to help suction out this mucus when it gets too much. She usually has a sleep at 12ish, so she struggles to stay awake during play picnic. She did really well today, but not sure if that had something to do with Bryce trying to bump heads with her a lot of the time. Stewart and Emma have been in contact with doctors from Graz for a long time and say they have seen major improvements in Mia so far. Please keep her and all the other patients in your thoughts and prayers. There is a little girl who has a muscular problem, and so I am assuming that she also has difficulties swallowing. Please excuse my ignorance - it is difficult to try and understand with the language barrier. I will make an effort to find out exactly why she is here. Another girl (Elina) who Gemma and Bryce have made good friends with, does not have a tube. She does not eat as much as she should and her mother is concerned. She has had tests done, and medically, nobody can find anything wrong. She just refuses to eat most things. Both these families are Austrian. There is a little boy from Germany, who was here in October, and learned to eat quickly. His tube was taken out on the first day. They are struggeling to get him to eat again. Once again, I can't give you details but will try to learn more. There is a tiny little girl in Gemma's ward, whom I have often seen been pushed around in her pram by a nurse. This evening Gemma wanted to go and say hello. She is adorable, I can honestly say she has the loveliest face I have ever seen. I was telling the nurse this, and asked where her parents were. My heart nearly broke when the nurse told me her parents had just given her up. She is nine months old, she looks like she is about 3 months old. As far as I gathered, she is being taken in by a family, but needs to gain weight, etc, which the hospital is helping her to do. Gemma and Bryce loved playing with her, and she was all smiles and giggles. We bought Gemma and Bryce some Kinder chocolate eggs. There is a toy inside, so it was a wonderful excercise for Gemma. We told them they could only have the toy inside if they bit a hole in the chocolate. As you can imagine, Bryce had no problem with this. Gemma ate half the chocolate egg to get to the toy. We were so proud of her. Poor Bryce - he just gets a dirty look if he eats too much chocolate. Grandpa Keith - We are not allowed to say NO! We went for a walk through the city this evening. We bought them a chocolate advent calender each. This we will use as a "going home calender" instead. When we got back, we told Gemma if she ate one bite of supper, she could open her first window. She reluctantly ate one spoonful over about 20 minutes, but she did it. I think she was highly dissapointed to find that the prize inside her window was another piece of chocolate. One day, I am sure, we will not be able to stop her from eating it. I am sure many of you are wondering about the constant glucose monitor (I will call it the CGM for short). It has taken a day or so to collaborate with our monitor. You have to set it every 12 hours, so this morning there was still a point difference between the readings on the monitor and the readings on our tester. For diabetics, I imagine, one point does not matter too much, but for Gemma this difference can be a hypo vs normal. The last time I tested her, the two readings were spot on. I know I'm confusing myself when I write this, so I hope it makes a little sense to you reading. Anyway, moral of the story. As from now, I think it will be great. It updates readings every 5 minutes. It has had a huge calming effect on Michael and myself. For instance when she fell asleep this afternoon, the reading on the CGM was high so we were confident her blood sugar level would be ok. You just have to press one button to find out. Her reading is currently 4.6. I am sure I will test her one or twice in the night just to make sure, but hopefully we can stop testing in a day or two when we know for certain that the readings are the same. We will only be using this one during our stay here, but hope to look into one when we are back home. Michael is doing amazingly well, practising to speak German, learning it when and where he can. Listening to Gemma's "Sound of Music" soundtrack that her granny Di-Zee gave her, I'm afraid all I can manage is: Farewell, Adieu, Auf wiedersehen goodnight. I hope you are all having a great weekend. We look forward to a nice break ourselves. Thank you everyone for all your kind words, it always helps your support behind Gemma. I really should have mentioned in last night's post that Gemma is actually OK. Once her body has responded to the glucagon, glucagel, etc. she actually recovers quite quickly and is back to her lively self within minutes. The stress that we as parents go through, is seeing her in that state, that may only last a minute or two, where she goes pale and screams out for help, and she becomes very lethargic. For us that minute can seem a lifetime. Yesterday there were three of those episodes, and that is why I felt shattered at the end of the day. But please know that Gemma is fine!!
Shortly after I wrote last night, Gemma was low again. I told the nurse, and the answer she got was that we should give her 2 tubes of glucose syrip. It had been an issue all day trying to get the syrip in her mouth. I was in tears, trying to tell her that Gemma would not tolerate the liquid in her mouth and she would vomit, and went on blah, blah blahing. She calmly looked at me, and said "but doesn't Gemma have a peg(tube)?" When I showed her she did, she simply said, "well you can just dilute it with water and put it down her tube." If we had of known THAT earlier, I think we would have had a MUCH better day yesterday. Anyway, I did this and her blood sugar rose rapidly and was good all through the night. I still gave her the polycose feed, so her sugars went very high, but as I have said before, rather high for Gemma. Gemma and I sat together for breakfast, but she didn't eat anything. I suggested we break up bits of a roll and spread different things on to taste them. I thought it was a bit creative, but she thought her idea was better. She hollowed out a roll and said she was making a handbag. She then stuffed all my broken roll pieces into her handbag.......and well......that was breakfast. Prof. Dunitz-Scheer and a few of the doctors took all the children and their parents to a musical theatre show. The singing was lovely and we had front row seats. This was not good enough for Gemma and Bryce. They wanted to sit on the steps leading up the front of the stage. Prof. Dunitz-Scheer told us to leave them. They were as happy as two peas in a pod, and the actors had to jump down the stage as their stairs were taken. Towards the end, Gemma climbed up and she ended up being part of the closing act. It was very cute, the producer of the show loved it. After the show Dr. Tauschmann took us to meet his colleague who inserted the constant glucose monitoring device into Gemma's stomach, well at least the sensor. The device is wireless and can clip onto her pants or in a pocket. It takes a few hours to activate, so we will find out later this afternoon how it works. We had play picnic after that. There was mostly pasta that was laid out. Towards the end, Gemma ate 3 pieces of pasta. I had a briefchat to Prof. Dunitz-Scheer, and told her I was completely stressed out yesterday. She is so calm when she speaks to people, and all she said was that she never expects any parent to be stressed out in this environment, so we must try and react before her sugars drop below 2.5. Hopefully the new system will help us be able to do so. I will be going back to the guesthouse with Bryce tonight, so Michael will be staying with Gemma. Right, so this is where I come in...Michael on sleep-in duty tonight. This is incredibly difficult...After Debs went home Gemma and I had dinner together. In principle. Although she had a tiny amount of pasta at play picnic (and earned another sticker on her chart) at dinner she only wet her lips with some cappuccino that she asked for. The food was not even attempted! We then played some games and when I checked Gems at 18:45 (15 min early) she was very low at 2.3. I had just started the feed so also gave her glucose and it was a painful 10min waiting for her blood glucose levels to rise. They did but this now leaves a very worrying night ahead... Debs has had 5 nights of this stress. She really is amazing how she just deals with it and knows Gemma and this condition so well. I hope she gets a good night's sleep tonight at the B&B. Until tomorrow, good night from Graz. Miracles do happen - I know, but sometimes you have to force them a bit. Our computer screen has been giving trouble for a few months, and last night it kept jumping. I was so fed up that I closed the lid, gave it a massive bang and voila - it has not given a single problem since then.
Things had been going so well, and we received so much positive feedback from everyone that I feel really sad having to share Gemma's day today. We have been told though, that all the children go through ups and downs, but for Gemma it is extremely disheartening because I don't know how she can be weaned if her blood sugars aren't stable. Gemma's night sugars have been good since we have been here, so the agreement was that we would drop her night feed to 25ml's of polycose water per hour. She went to sleep with a fairly good blood glucose level, but as the night went on, her levels kept dropping. I was checking every few hours. Eventually I decided to increase the speed of her Polycose water, but after 30 minutes she had dropped to below 2.5. I gave her some sugar syrip that a doctor advised to give instead of the injection. It is given orally so Gemma really refused to take it. After a struggle, she asked why I had to give this to her. At that time of night, the only answer I could think of was "we don't want you to have to go to heaven too early, so we do what we have to to protect you." She answered back "mommy, I will never ever leave you, I will always be here to keep you safe." Her blood sugars rose to a safe level, and were stable the rest of the night. She wasn't interested in breakfast, as she was too excited about swim time. Swimming was great. There was only one other mom and her daughter. It is an hour where the children can just relax and enjoy the water. Gemma swam on a pool noodle "all by myself"she kept saying. She then asked for wings, and once again was confident in swimming by herself. I hardly had to help her. When we got back to the ward, the doctors were doing their rounds. We agreed that we would drop her feed by another 50mls per feed, according to yesterday's good readings, regardless of what had happened during the night. Michael and Bryce arrived at this point, and Eva, who took us for swimming, brought Gemma a big piece of cardboard with some "hello Kitty"stickers. We will reward her with a sticker every time she eats something. At 10:30 Gemma had Music. This is nice and relaxing, and Brigitte, the therapist, asked us to bring some snacks with. It was amazing to watch Gemma happily eat a biscuit while Brigitte played the guitar. She sang songs that Gemma knew, so she was able to join in. There are lots of little instruments that Bryce and Gemma could choose from to play along with her. Gemma's sugars were good at 11:00. We started her feed during Occupational Therapy. It was fun to watch. She had to build animal puzzles, and then a fence out of a wooden Macano set to protect us from the tiger puzzle. She was then asked to feed the tiger from a big baby bath full of dried lentils. Most of the session was then revolved around Gemma playing in a tub of lentils. She kept saying to Regina and I that it was now our turn. If the tub was slightly bigger, I would have loved to sit in it- it looked very therapeutic. At 12pm, she had play picnic. It was from this time that Gemma's blood sugars went downhill. During play picnic, she was very irratable and didn't attempt eating anything. When she goes low, she lets off this horrible moaning scream. She did this towards the end. I was putting Bryce to sleep and Michael didn't have the glucometer. He came to find me, and on testing her she was 2.4. She really doesn't like us putting the syrip in her mouth,so we offered her the choice of trying to drink some juice. This was probably not fair on her, as once she is feeling that way, she really can't be bothered with food or drink. We eventually forced some syrip down, but it took a long time to work. Her blood sugars rose slightly but then dropped down to 2.3. She fell asleep immediately, and only then did her sugars start rising again. At 14:30 her sugar had dropped back to 2.7. We gave her the feed, but increased the amount again. We took her to Psychology, whereby the therapist asked questions to get to know her. Bryce and Gemma were both playing, and she looked well so we thought she would be alright. After the session, she let out the moan again, and on testing her she was 1.9. This is the lowest she has been since her surgery 2 years ago. We gave her the syrip again, but she vomited most of it out. One of the doctors advised that we give the glucagon injection because of the vomit. I have no idea what to think anymore, no one can tell us why this is happening. It is possible that her pancreas is regenerating itself, which means that they would possibly have to remove some again. This is just me jumping to conclusions, so we just take it day by day and see what the doctors say. Michael and I have controlled her blood sugars for 3 years, and for the first time feel totally out of control. The rest of the evening has been about us monitoring her, and giving her the syrip when necessary. The other day I mentioned that I had pricked her fingers 11 times during the day, today was almost 30. I just can't even think about the feeding program any more when all of this is happening. The doctors are really doing their best, and respond quickly when the nurses phone them, so at least we do not feel alone. At the end of the day, there is one Hello Kitty sticker on her board for the biscuit she ate in music. Gemma is now asleep, and I will be keeping a close eye on her tonight. There are two beds in the room, but she has wanted to sleep with me. This at least makes it easy to check her. I really do write all of this with a heavy heart, because so many of you were excited about her progress. I know I am very emotional at the moment, so maybe things aren't as bad as I have made them seem, and as we have seen time and time again - Gemma always We are still hanging in there, and hope that Gemma's blood sugars improve. The nurses are really amazing, so I know they are there for Gemma throughout the night. All I can ask now is for you to keep her in your prayers. Love to you all. It is only 18:45 and Gemma is fast asleep - a sign of a busy day gone by.
The day started with breakfast, same as usual, just Gemma and I in the playroom. I offered her a variety of things to eat. She was just not interested. I do think, however, that because yesterday had gone so well, I was trying too hard to get her to come and sit with me and eat something. I think I broke one of the cardinal rules.....I bribed her to eat two spoons of yoghurt. She asked me if she could help me administer her medication, (it goes into her feeding tube via a syringe and I sometimes let her push the syringe). I told her she could only do that by eating two spoons. She ate the yoghurt willingly, so I don't feel too bad about bribing her, but I know that that should never happen again on this program. We had reduced her night feed slightly and her blood sugars were good the whole night through, as well as when she woke up. For those at home who knew her not to have any feeds at all during the night, we have gone back to polycose all night feeds to make certain her blood sugars stay stable throughout the night. After breakfast Gems and I stayed in the playroom building puzzles waiting for Michael and Bryce to arrive. At this stage we did not know the schedule for the day, and at 10am about 20 doctors all dressed in white came into the room for the doctor's rounds. Prof, Duntitz-Scheer said we should stay as we were already in the room and she could introduce Gemma to the team. I can't say that it was not intimidating, but at least Gemma enjoyed the attention. It has been absolutely amazing that she has felt so comfortable around all of the staff here. I have mentioned before that she usually gets extremely upset at the sight of people in uniforms. Prof. Dunitz'-Scheer was explaining to the team about Gemma's low blood sugars before we arrived and how she has stabilised since she has been in "our home". These words made me realise that the staff here really do look after the children as if they are their own. Prof. Dunitz-Scheer wanted us to reduce her feeds to 150mls, but still add cornstarch. Michael and Bryce arrived at about 10:30, bringing with them a beautiful bunch of yellow roses and barbeton daisies (my favourite). They said the flowers were for their two ladies, and we felt very special indeed. They also had two packets full of snacks for the play picnic. We have been advised to keep as many snacks available for Gemma to see and take as she feels. Well...you can imagine who takes advantage of this situation. Mr Bryce cannot stop himself. He put about 5 winegums in his mouth, and I do believe that he swallowed most of them whole. A doctor came to show us the constant blood glucose monitoring system. For those of you who know what an insulin pump looks like, it is very similar to that. It has a small needle that gets inserted just below the skin and stays there for up to 4 days before you need to change it. This is connected to a device that Gemma can wear hooked onto her trousers and takes blood sugar readings every 5 minutes. From a psychosomatic point of view, this should help Gemma through the program. It is believed that she feels the stress and tension that I or Michael go through when we prick her and find a low reading. By having the machine monitor her, any unneccessary stress can be avoided. Also, so that Michael and I can step aside and let the machine do the work, and we can focus on just being supportive parents instead of nursing her. A professional will be inserting it on Thursday. At 11am, Gemma had an Occupational Therapy session. The therapist, Regina, mostly asked questions to get to know Gemma. Michael and Bryce joined for a few minutes, but Bryce was jumping all over the place (probably from all the sweets - which he calls beeties) so they left to go and play in the park. I had premixed a feed for Gemma with fibre in it, and not realising that the fibre would compeletly clog up the tube, I could not get her feed to run through. Her blood sugar reading was fairly good, and knowing that she had at least got a tiny bit of food into her system, I decided to take the chance and not run off to mix a new feed. At 12pm, I rushed Gemma to the play picnic, so still did not have a chance to mix a new feed. Play Picnic is set up in a room lined with table cloths, covered in little bowels of different types of food with chips and chocolates scattered everywhere. Gemma found a plate with some pureed cinnamon apple. She had many spoons of it and even asked for more. Um...well.. Bryce ate three fairly decent sized chocolates, and we can't even say no to him. He has scored a very lucky deal. At this stage (I know I shouldn't have been) but I was concerned about Gemma's sugars, as she had not had a high carb meal since 7:30 am. I tested her and she was 2.7, which is low, but here the doctors are only concerned if they drop below 2.5. So this was another amazing acheivement, 6 hours without a pediasure feed - the apple must have helped. At 13:00 she was due to go to Logopedics (speech therapy). Michael took her, and I took Bryce with me to make her a new feed. Her therapist is Elisabeth, who was also just getting to know Gemma. She told us that she is really looking forward to working with Gemma. Gemma was very easy going with Elisabeth, so maybe in the future sessions we will try and let Gemma go on her own, without either one of us in the room. We came back to our room. Gemma jumped on the bed, grabbed a packet of Pom-Bar (chips in the shape of teddy bears), lay down and ate one after the other, as if she was getting ready to watch a movie or something. Michael was drinking a cappucino (out the vending machine, so not a very hot one), which she stole from him and drank about a quarter of it. Later in the afternoon, two clowns came to visit the ward. They made a balloon dog for Gemma. She wangled another one to give to Bryce. I hadn't planned her evening feed very well. Bryce fell asleep, so I took Gemma to the shops to get a few things, and time slipped away. I was not able to offer her anything before her feed, and by the time we got back to the hospital she was tired and didn't want to try. So a lesson learnt, time management is very important here with regards to offering her food at the right time. Michael and Bryce left early. We have swimming at 08:30 tomorrow ,so if they both get an early nights sleep, they will be able to join us. I can, with confidence, say that today was another successful day and we look forward to what tomorrow brings. Thank you again for all the messages, whether it be on facebook, emails etc. We do value each and every mesage or "like" on facebook. It is wonderful to know that so many of you are following |
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