Remaliah writes.....
We’re recruiting for Team Eléa with the goal of seeing her become tube free and eating normally, through the expertise of the NoTube team!
Eléa has been 100% tube fed since birth because her medical team had suspicions that she might not be able to swallow safely, in relation to her periventricular leukomalacia brain injury which affects her muscle tone (low). She had a nasogastric tube until she was 15 months old, when she had surgery to have a mic-key button inserted. Life became a step easier with the mic-key button as she no longer had a tube down her nose and throat and I no longer needed to re-insert the tube when it was pulled or vomited out, which happened regularly. The plan was always to offer her foods until she might begin to eat sufficiently to no longer need the tube. This is a complicated process because tube-fed children are fed maximum and very structured feeds, so they don’t feel hunger or realize that food helps to satisfy hunger. Eléa was eating small quantities of puréed foods up to three times a day alongside her feeds, until she had a run of urinary tract infections and a subsequent surgery to remove kidney stones. During this time she gradually stopped eating to the point that she would refuse to take anything. We can see that she is interested as she sits with us at the meal table, and watches us eat snacks. So we have got to the point that ‘enough is enough’ and we want to help her realise the miracle of eating independently to the point that she no longer needs her tube. This will be life changing for her and will be a huge burden off all of our shoulders - no more piles of equipment, complications, regular vomiting (a side-effect of being tube-fed) or the large amount of organisation that is required with tube-feeding. It is our dream to see her experience the huge gift that it is to eat normally.
This is where the NoTube Net-Coaching tube weaning programme comes into the picture. We have known of NoTube for a while now, after friends completed one of their programmes and saw their little boy begin to eat normally, and have his tube permanently removed. It is an organisation based in Graz, Austria, who are headed by a team of medical doctors and therapists and have successfully weaned thousands of children over more than thirty years. We have completed the initial assessment through which the medical team in Graz have read through Eléa’s medical notes, history and a thorough questionnaire, and have watched videos of Eléa’s reactions to food, water and in a play situation. On Monday February the 13th we received a ‘YES’ from the team and are now able to begin the weaning programme anytime within the next four months (we intend to very soon!). We will stay in our home and be in close contact with the NoTube team via an online system, through their ‘Net-Coaching’ programme. They will guide us through the process of weaning Eléa safely, allowing her to feel hunger and, with time, helping her to realize that eating food and drinking fluids will satisfy that feeling of hunger. I anticipate that it will be an intense time during which we will have to place our complete trust on the team that they are experts in this field and know what they are doing. But the end goal will be infinitely worth it! The team will follow us until 35 days after Eléa has been eating with no tube at all.
The costs for this programme are large but, as many parents have said in hindsight: ‘It was one of the greatest investments we have ever made!’ and we are willing to make the same investment. The costs are as follows:
Assessment EUR120.-
Net-Coaching programme EUR4240.-
Total EUR4360.-
(approx NZ$6442, CHF4651, US$4628, GBP3706)
Is this is something that you would really like to help support us financially with, we would be more than grateful. Please don’t feel obligated and only give if you are able to and would like to support Eléa and us in this way. I will no doubt be giving regular updates on my Facebook page and we are so encouraged knowing there is a wonderful team of friends and family from all over the world beside us supporting us not only financially but in a number of ways!
With a hopeful heart!
Remaliah, Etienne, Amélie, Elise, Théo and Eléa Lacombe.
P.S. If you have any questions, please feel free to email me at remaliah@gmail.com. Alternatively, here is a description from NoTube about the programme and why it not only changes the life of a child, but also saves the country a lot in medical costs!
https://app.hubspot.com/presentations/374345/view/3706963?accessId=cf665f
