You may remember that apart from severe hypoglycemia, serious infections or\u00a0several emergencies<\/a>, one of the things that more work, perseverance,\u00a0energy\u00a0, tenacity, patience and good sense of humor required was the need to teach me how to eat by mouth, to take solid food.<\/p>\n This was tremendously important, to be nourished like any other child, to have a healthier diet, to leave\u00a0the nasogastric tube\u00a0one\u00a0day\u00a0(at least during the\u00a0day), to receive vitamins,\u00a0proteins, nutrients, fiber, in a more natural way.<\/p>\n The thing is that learning to eat when you are living with GSD is not that easy.\u00a0On the one hand,\u00a0having a nasogastric tube\u00a0is not at\u00a0all pleasant and it bothers a bit when you are trying to learn.\u00a0On the other hand, even those little ones who do not have the NG tube and went for a G-tube also have challenges.\u00a0Why?\u00a0Mainly because our stomach is always full a we have a\u00a0permanent\u00a0feeling\u00a0of\u00a0satiety.<\/p>\n As you may remember, we have to take cornstarch (CS) dissolved into water\u00a0several times a\u00a0day. It becomes a thick lump in the stomach\u00a0and is digested little by little… and when it is almost finished… Boom! … another meal and another CS. Being a slow absorption carbohydrate, cornstarch,\u00a0gives us\u00a0energy for about three hours and it helps us make longer fasting period and have better quality of life … but it does not help at all if you want to feel like eating.<\/p>\n Now I am eating like a champion, I enjoy the food, sometimes I even say\u00a0I\u00a0‘m hungry!!!!\u00a0(then my parents shed a tear of joy..)<\/p>\n Getting there\u00a0has not been easy.\u00a0We have fought every spoon, every food, every meal, everyday, every week, month and year. It has been an\u00a0enormous\u00a0effort, specially considering the severity of the disease (not being able to sleep well at night, the stress of hypoglycemia or emergencies …) and in the midst of a pandemic.\u00a0Now\u00a0we are super happy with the good results.\u00a0It has all been worth it!\u00a0😊<\/p>\n We are infinitely grateful to many people: to Florentine, the super professional we met at the University Medical Center in Groningen (UMCG)<\/a> in The Netherlands, part of Wonderful Dr. Derks<\/a> multidisciplinary team, who made us have real hope for the first time in this regard, and to all our relatives, friends, caregivers, speech therapists or healthcare professionals who have fed me (or tried to), who have given us useful advice,\u00a0or who have done a thousand crazy things in front of\u00a0me\u00a0to give me\u00a0courage and\u00a0strength.\u00a0It has really been a marathon that we have run as a team.<\/p>\n We take this opportunity to leave\u00a0here\u00a0some recommendations for families who are now going through this period.\u00a0For all of them, we send a lot of strength and positive vibes!\u00a0Don’t throw in the towel.\u00a0You will get there, spoon by spoon, day by day, one thing at a time.<\/p>\n Remember that we are not speech therapists, or health professionals. We suggest you consult with your medical team at the hospital.\u00a0However, as many of you have asked us to tell our experience, we believe that it is worth sharing our adventures, as\u00a0so many\u00a0of you have done with us before. Here we go:<\/p>\n –\u00a0Make it a FORMAL moment … and also a PLEASANT and FUNNY one. This is not incompatible!<\/u><\/p>\n It is\u00a0very important that the little one understands that it is time to have a meal and that this is what he\/she has to do.\u00a0If you had seen me in the beginning …\u00a0Mamma mia! I would try to eat for 5 minutes and then I would run away and start playing… and my parents would run after\u00a0me,\u00a0spoon in hand…<\/p>\n You have to avoid that and the ideal thing is to have a highchair for babies (I could escape even from those, but it was a bit more difficult… \ud83d\ude42 ).<\/p>\n You also have to be assertive and convincing, in a pleasant way, but without leaving room for hesitation, because the baby has to eat and that is not negotiable.\u00a0You have to insist and be\u00a0constant,\u00a0but\u00a0never, never, never, force the child or lose patience, or let him\/her see your frustration when food is rejected.\u00a0It is necessary to avoid at all costs that the moment of eating is identified as a forced or unpleasant moment.<\/p>\n Formality and assertiveness can go together with fun.\u00a0You can chat, sing, bring a doll or a book\u00a0or\u00a0have someone else accompany\u00a0the moment ”\u00a0cheering” …\u00a0etc. Once in a while you can also be very creative and present your food as if it were, for example, the face of a clown (two cucumber slices as eyes, a pepper as a nose, a mouth made of\u00a0chicken …\u00a0etc.)<\/p>\n I especially remember a very magical moment: in the middle of the pandemic, in Spain, hundreds of people came out to their balconies at 8:00 p.m. to applaud the healthcare professionals.\u00a0My parents planned to give me dinner so that I would finish at 8:00 pm. And so it happened, I finished dinner and hundreds of people began to applaud (me) … my parents more than anyone … so I gave them my usual smile and my eyebrow lift … and I spent several weeks highly motivated by dinner.<\/p>\n – If possible, let them eat with other children and have other people help you.\u00a0Avoid screens.<\/u><\/p>\n Eating with other children always made me eat better. I don’t know why, maybe because of imitation, because I\u00a0felt\u00a0part of a group,\u00a0because somehow it encouraged my\u00a0appetite … who knows.\u00a0I remember that during our time in the\u00a0Ronald McDonald House in Malaga<\/a>\u00a0where there were other children and families who\u00a0had to\u00a0live near the hospital, it helped me to see them eat and everyone there encouraged me a lot.\u00a0Since I started going to kindergarten I have also made a lot of progress, I have learned to eat by myself. This summer I have spent a few weeks with my cousins \u200b\u200bwho are “very good eaters” and I have made even more progress.\u00a0Sometimes someone feeds me because apart from eating exact weighted amounts of food we must also control the timing in which I eat them… but soon I will manage to eat everything on time by myself.<\/p>\n I also remember that when someone “new” tried to feed me, I ate better.\u00a0I don’t know if it was because of the novelty, because they did it differently or because they look fresher, but it was like I was more predisposed.<\/p>\n I admit that a few times I have eaten watching a video on the phone, especially on\u00a0days\u00a0when there\u00a0was\u00a0absolutely\u00a0no way to make me eat.\u00a0But screens have their risks:\u00a0every time I\u00a0watched\u00a0a video at lunch, I also\u00a0asked for a video that\u00a0day\u00a0at dinner, and the same the next\u00a0day. I began to link food with videos and knowing that\u00a0“screens”\u00a0are not good for children, this\u00a0had\u00a0to be controlled.\u00a0Luckily, I am very curious and I am entertained with almost anything so\u00a0it was easy to disconnect from\u00a0them.<\/p>\n –\u00a0Try different foods, flavors, textures, colors.<\/u><\/p>\n It is important to train our taste and get used to eating a big variety of things.\u00a0It is good to identify what we like the most and what attracts us, but keep offering us a bit of everything, and if we reject something, keep trying (insist, do not force) any other time. When the little one accept a new food, give it to him\/her in several occassions any other time so that the acceptance is consolidated.<\/p>\n –\u00a0Use small plates or containers, adjusted to the amount of food the little one should eat:<\/u><\/p>\n We all love feeling like we have achieved something, that we have succeded. If we see that we have left the plate empty, we feel better, and we are more eager to get it next time. We do not want large plates with more food than we need so that by the end of the meal we see leftovers on the plate…<\/p>\n – Have a system, consolidate progress, increase quantity and improve timing gradually:<\/u><\/p>\n For instance, choose 5 different foods, a piece of: boiled egg, macaroni, fish, avocado and a chickpea.<\/p>\n Start the first day by giving a single piece of one of these foods and see how the little one reacts.\u00a0If you give him a chickpea and he spits it out, do not worry, he\/she should not see you frustrated, remove the chickpea discreetly and write down in a registry that he has not eaten it. You can try again any other time till your succeed and, in the meantime, you can try other things.<\/p>\n If,\u00a0on the other hand, he\/she eats chickpeas well, congratulate him\/her, write it down in the registry, and on the next try, give him two chickpeas (one after the other) instead of just one.<\/p>\n Same with all foods, until the amount increases little by little.\u00a0When the little ones eat considerable quantities, if it takes them a long time to eat (half an hour, an hour), you will have to try to shorten the timing step by step. Then the little one should start eating alone … and well, as he\/she grows up, everything will get easier.<\/p>\n![\"\"](\"https:\/\/ninalaguerrera.org\/wp-content\/uploads\/2021\/08\/nina-cuchara-1.jpg\")
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