Last school weeks
The last few school weeks went quite smoothly, and she attended school on time as well. Seeing that she could go to school like her classmates, without getting sick was wonderful.
One of the teachers was such a gem. We clicked instantly, and she took the time to get to know us and our history. She really wanted to help Elodie with her eating development. Next to that, being an artist herself she loved how Elodie was into drawing and painting. She loves helping Elodie express herself, relax and be more confident. I feel so blessed meeting people like her.
During the first 3 summer holiday weeks Elodie went to the out-of-school day care.
She started to enjoy going there because she could do everything she likes, like drawing and being creative (unlike at school). We never had to skip any day because of illness, so I was pleased that we didn’t waste any money. It costs about 110 euros a day, so you can imagine.
Going to Spain
The last few holiday weeks we went on holiday to Spain. I was quite scared… How will she eat, is there any food she likes, will she like my mother-in-law’s cooking, do they have her safe foods, will she have fun? I asked my brother-in-law to check some safe foods, so I knew whether we had to bring them ourselves. We added one large suitcase for all her foods and some toys and books. It was our first ‘real’ holiday since Elodie was born.
At the airport she ate 8 chicken wings. Eight, eight, I wrote 8!!! It was amazing. She was so well-behaved. Except that I told her to go to the toilet and she wouldn’t. And just before boarding she tells me she needs to go, that was so stressful. But she ate eight chicken wings, hahaha.
There was a swimming pool behind the house, so we quickly got into a routine. Breakfast, medical nutrition, swimming, lunch with grandparents, swimming and then dinner. We continue to give medical nutrition because she doesn’t eat enough in the morning before school starts, and she can’t last the day without the extra calories. We continue to give it to her during the holidays to keep her ‘trained’.
Gained 800 grams in 3 weeks
Elodie was eating amazingly! It was so magical to see, she tried so many new things and was eating big volumes. I couldn’t believe my eyes. She was eating ‘normal’ kids quantities. We don’t want her to eat whatever we eat if she doesn’t like it, so I try to make sure I have something with me that she will eat. She can eat as long as she wants. Sometimes she eats for over an hour, and that’s fine. We ate just happy that she enjoys her food.
She finished the entire big suitcase with safe foods earlier than expected. I got a bit stressed when she finished all her bifi (dried sausage) a week too soon, and she didn’t like the dry sausages in Spain. Luckily she liked the chicken and ham my mother-in-law made, she ate lots of it. In her sleep she said she wanted to drink milk. Who would have ever thought she would be dreaming of food?
She gained 800 grams in just 3 weeks. We were so shocked that we blamed the scale, it surely wasn’t accurate. But we got the same numbers when we got home. She was 18 kg at around 112 cm.
Elodie was relaxed, we had fun, and were rested. It was our first family holiday since Elodie was born, because it simply wasn’t possible before. We did some side trips when we went to NoTube in Austria. But we couldn’t really call them fun as we were either still struggling with her eating disorder, or recovering, so not stress-free. I can honestly say that this holiday was amazing, so amazing that we decided to go 4 weeks next year.
Beginning of the new school year
Elodie was going to group 1, in primary school. It’s a combined class with group 2, these kids are a year older. We could tell that Elodie was under more pressure, didn’t have much time to eat at school, and doesn’t like to eat her lunch box foods. She likes to eat warm pasta, noodles, roasted pork belly, pizza and fries for instance. Typically, dinner meals, so we can’t give it to her when she goes to school. She also didn’t get an hour to eat her lunch, and extra attention like when she was in kindergarten.
Within a month she lost all the weight she gained in Spain. We didn’t worry because her weight was still in the healthy range, and it was amazing to see what she was capable of when she was in the perfect environment for her.
Going to school also meant being around viruses. She had a runny nose most of the time and was not feeling fully well, but she could go to school most days. In October, she got the stomach flu, which we all got eventually. It was terrible. Being sick and take care of your family. Don’t know how other parents do this. We only have one child, what if you have four? In December Elodie got the flu, but she was still able to go to school. So I feel her immune system is getting more robust.
In general, I feel that her immune system got stronger. I heard that other children were sick at home, and she was able to withstand some rounds of flu.
We were still allowed to bring Elodie to class a little later. I believe this helped her stay fit for school, because she was at least rested every day.
And then a month after school started (September) we got the devastating news that my mother has pancreatic cancer. My world broke into pieces. Just as our relationship was getting better, and she was really trying to understand Elodie and listening to her needs, basically being a more western grandmother, she gets cancer. It’s so unfair. After working so hard her entire life she got mental issues, she recovered, and she is doing better for a year and a half and then cancer.
Within a month after diagnosis she got her Whipple surgery, which is the second most complicated surgery. She was lucky she could have it because only 15% are eligible. We were hoping that she would be at least cancer free for a year, which is about the mean for it to return. And then a day before New Year’s Eve we hear that it has metastasized with numerous lesions in her lungs and liver.
We were just in a more stable place as a family and then this happened. As the main ‘fixer’ in the family I had to manage all her appointments and drive her around. Luckily my dad is still healthy enough to take care of her and to cook meals. I had to take sick leave just before her surgery because I just couldn’t manage it all. I was crying all the time and couldn’t concentrate on anything else. The thought of being without my mum, even though we had our struggles was crushing me. All my grandparents lived well into their 80s or 90s. My mother was coming over 3 days a week to take care of Elodie, she was the fittest of them all. How, and why, it’s so unfair, and this is one of the worst cancers, very bad prognosis…
I was exhausted, I didn’t have time to focus on Elodie’s eating and to cook meals for instance. Elodie felt that something was up, and she wasn’t into eating, I lost 3 kg myself which made me underweight. Elodie was not entirely fit either, and was mainly on medical nutrition for a few weeks. I didn’t have the time and headroom to work on her eating, I couldn’t even manage our own. She said that she didn’t want to eat, fine you will get a Nutrinidrink. The fact that she was not feeling well, not full-blown flu, but something simmering didn’t help either.
I was short-tempered, scared, frustrated, confused, and definitely couldn’t handle some toddler tempers. Going to my parents to spend time with my mother, running my own household, getting my own therapy, it was too much.
It took a while before we found some sort of balance. And when it was more stable Elodie started eating again. During the second week of the Christmas holiday she was getting interested in food again. She was rested, and she looked healthier.
We have decided that Elodie will not go to after school care. The one she usually goes to didn’t accept holiday care anymore due to personnel shortage, and we didn’t want to bring her to the new one further away. I decided to find teens who could babysit Elodie after school and during the holidays, so she could recover.
So much improvement
Since going to NoTube our lives have changed so much. The biggest differences we have seen these past months summarised:
1. She continues eating while she was sick. Not as much of course, but she eats. One time she couldn’t eat or drink because it would come out immediately, she was complained: you are abusing me by not feeding me. XD
I never thought I would hear those words. She was so sad and hungry.
2. A few years ago we had the feeling that Elodie was eating in bed during bedtime, so she could stay away longer. Dr. Scheer said that was probably true. She knows it’s our weakness. At that time she couldn’t properly speak yet, now she told us she liked to eat during bedtime, so she didn’t have to sleep yet. Very often we would oblige and give her food, but sometimes when it was getting too late I would say that she wasn’t allowed any food because it was bedtime. For me to realise what I was doing was amazing, this is such a big step for all of us. Parents saying ‘No’ to food.
3. She is eating big spoons or forks full of food like rice and pasta. Sometimes she uses her hands and fills her mouth full of food and chews and swallows it without any problems. She looks like a chipmunk while doing that. It’s amazing to see.
4. Rarely do I hear her gag, like she usually did in the past. 2 years ago, just after NoTube, I could only feed her 3 macaroni pieces without her gagging from it. Isn’t that amazing?! Also, she doesn’t vomit anymore when she is excited or upset.
5. She doesn’t necessarily need to watch TV when eating. Occasionally we will just sit at the table and just eat. We don’t focus on her, she will be very focused on her food and can eat just like that, no need for distractions. And if she wants TV or draw while eating we let her.
6. Sometimes I tell her to finish the last two spoons of her meal, so we can go do something else. Saying that is hard to resist. She will say ‘no’ if she really doesn’t want to though. And I will not push her further. Hubby is better at letting go and just be proud of the moment.