Good news on feeding, and Dad dumps difficult thoughts

There have recently been some very positive developments in Loki's feeding. We previously mentioned that, since about February, we have been trying a different approach, which uses both rewards and punishments to convince him to eat. Once he started to actually swallow food, we reduced his tube feedings, both because he was getting food by mouth and because we wanted him to become hungry. We cut 1/3 of his tube feeding, and then 1/2, and then about two weeks ago we took the plunge.

Now, for the most part, Loki is getting all of his calories by mouth. Of course, we still must give him a couple dozen shots of water each day to keep his kidney rinsed. (Yes, it is an ironic coincidence that his feeding problems gave us the tube, which helps us take better care of his kidney!) And if he does not eat enough in a day, and/or throws up too much, then we give him some food via tube at the end of the day. Furthermore, most of the food he eats by mouth is liquid or blended. We will later work on chewing tougher foods. Regardless, this is a big reason to celebrate.

Although this is a big step forward for Loki, in some ways this is a step back for us. Feeding him by mouth is extremely time-consuming, confrontational, and tiring. This is especially the case for Mom, who does most of this work, by far. We (i.e. she) do (does) up to five feeding sessions per day, and on a tough day, this can add up to 4 or 5 hours. Each session is continuous cajoling, for example, by offering Loki the next piece of a toy if he just takes a certain number of bites, or warning that he'll be punished by sitting in the stroller for two minutes if he refuses. Being two years old, Loki tries to push us as hard as a he can. During a difficult session, he'll go in and out of the stroller for 45 minutes before taking a single bite. In addition, Loki has become rather creative in using gagging and vomiting to try to get his way. Mom has the patience of a saint. If I faced that, I would probably give up and move to the tube.

Loki eats much better if he is watching some video, either on our computer or smart phones. Thus, sometimes we'll reward him a short clip, or even do the whole meal in front of a video. We certainly do not like him watching this much TV, but it may be the lesser of two evils. A side effect of the confrontational feeding, and especially the vomiting as a result, is that he shows increased aversions to food and to eating. Loki is excessively sensitive to things touching his face: he almost obsessively wipes his mouth during eating, and does not like kisses on his face (never has). We plan to later transition away from any use of video.

Another challenge in this is healthy food. This is particularly important because of his kidney, which requires a special low-protein diet. We previously made super-healthy tube feedings. Now, we just want him to eat by mouth, and this sometimes has less-than-ideal dietary content. This is something we presently work on. This means much time putting together organic, well balanced meals, which still tickle his taste buds.

While all this is clearly a major positive step for Loki, it is difficult for us. Feeding him in this manner is extremely tiring--physically, mentally, and emotionally--especially for Mom. This feeding work is on top of all of his other special care, such as medicines, shots of water, throwing up, extra-caution about potential illness, numerous doctor appointments, etc. And all of this special work is in addition to the care for a normal toddler. Finally, Loki's care is added to the needs of living a 'normal' life.

On a daily basis, this leaves little room for us (individually or together) to do, think, or feel much else besides Loki's care. Furthermore, this tiredness has accumulated and has left us exhausted. Mom went on bed rest during her pregnancy almost three years ago, and the work and stress has not relented. We don't really get breaks. If one of us takes a break (as I have been able to do a few times, usually for work), it merely shifts the burden onto the other. It is even tougher for us both to get away. Not only is Loki a lot of work, but it is specialized work, and it keeps changing. To be honest, I am always trying to keep up with Mom's latest experiments and modifications to Loki's feeding. We can't simply hire any baby sitter. It is probably unsurprising that this situation often wears us down individually, and can stress our relationship.

I had previously not given much thought to raising a 'special needs' child. To the extent that I had, I believe that the extra work is obvious. Its tiring nature is also logical, although I could not have understood exactly how exhausting it is. However, what I never expected was the degree of isolation. Everyone needs someone to whom they can turn when life is difficult, either to discuss problems or just to relax and chat about other things. Yet we can't escape the feeling that very few people truly understands our situation. Sure, our close family members have pretty good ideas, as do other parents of special needs children. But when I talk with most others, I cannot help but feel there is an important gap between us which cannot be closed. This has probably contributed to my difficulty in making and maintaining friendships.

Let me clear that we are incredibly grateful for the support which we have received. In no way do I wish for these words to mean otherwise. Many of our family members, friends, colleagues, doctors, and nurses have done all that they can to help us. (In fact, Mom's mom and step-dad just took Loki for 48 hours so that we can have some rest-and-relaxation in Amsterdam! Our first two night get away without) But there are limits to what can be done and understood, and I find them to be challenging.

And most of all, let me be clear that we are incredibly grateful for Loki and his generally improving condition. If, in the fall of 2008, I could have spoken with my current self, and learned how Loki would do two and a half years in the future, I certainly would have been overjoyed. I try not to lose sight of this, although this can also be difficult.