A little piece of heaven

Again, thank you SO much to everyone who responded to yesterday’s post about the G-tube. I am very grateful to all of you who took time out of your busy days to help us. I appreciate it!

On to today’s topic…Stress.

It seems that no matter how things are going there are always things to be stressed out about. Little things, big things, daily life things, unforeseen things. I used to think stress came with the special needs territory…now I know it comes with the parenting territory 😉

So the question of the day is…how do YOU manage stress?

I’m a big advocate about us moms taking care of ourselves. But the ante has been upped now that there’s 2 and there are days where there just isn’t time for me to take “time out”.

So how do you take care of yourself and keep your sanity when the day is a barrage of little people to care for and things to take care of?

Nathan is thin. Very thin. Like, I can wrap my hand around his whole thigh thin. Up until now, he’s been thin but he hasn’t looked skeletal. He’s grown a lot though. I don’t know how tall he is, but he’s gotta be at least 40 inches tall. So with this growth spurt, well…he’s starting to look just too thin. Which is why I’ve been mentioning the thought of a G-tube.

My main concern is that if he is not getting enough calories, perhaps his brain is malnourished and he is not receiving enough calories for his body to function properly and for his brain to develop. Could this weight/eating issue be having a negative impact on his health and development? That is the question.

It used to be that food was his greatest enjoyment and motivation. He LOVED eating. Eating was his thing – he was a little pig. But as he’s grown he’s lost that joy de vivre de that he had around food. He is now a pro at clamping his mouth shut as soon as a spoon comes near his face. Which is pretty impressive for a guy who’s little mouth is always gaping open. He is an expert mouth-controller now when it comes to food. Part of it is that he’s not as interested in eating healthy food as he’s interested in eating junk food. But, as I’ve mentioned before, junk food causes congestion in him which makes him throw up which brings us to square one.

So one issue is his desire to control his environment by deciding what and how much he eats.

The 2nd issue is the congestion. Being off his GFCF diet kept him congested for months, which led to vomiting. Now that he’s back on his diet, he’s been less congested and not throwing up as much. Except for the last few days as he’s had a nasal and ear infection and he hasn’t been wanting to eat. So we keep his congestion away with homeopathics and his diet, but then he doesn’t like the food quite so much.

Lately we’ve resorted to making him a protein shake with protein powder, almond milk, honey, prunes, and rice cereal to try and get more calories into him.

But it breaks my heart as we were moving forward with eating – he was eating very chunky foods, biting and chewing, handling all sorts of textures. Now I look at him and I feel as though we’re sliding backwards. He’s now taking 1 or 2 bottles a day, and all of his foods are very thinly pureed. REgressing, not PROgressing.

So that’s the 2nd issue – he’s not interested in eating healthy foods very much, so he’ll take a few bites and rock out closing his mouth and spitting out food that we sneak into him by tricking him into laughing.

Which brings us to the weight and malnutrition issue.

My fear about getting a G-tube is that it’s another source of infection and problems. More hardware in his body (he already has a shunt). More things that can go wrong. I’ve also heard that having a G-tube can create more issues with reflux. Plus, it would mess with his oral eating if we bypass his mouth and go straight to his stomach. We’re very much “on the go” type of people. How would a G-tube affect our lifestyle?

The advantages would be that we can make sure that he is well nourished and well hydrated. We can feed him all sorts of goodies straight through the tube – vitamin and supplement heaven! Plus we can give him all sorts of great meals that don’t taste good – like raw vegetables, coconut kefir, etc etc. We wouldn’t have to spend so much time every day trying to feed him – some days it seems like we spend half the day trying to get him to eat something! So that extra time could be used in therapy, especially knowing that he is well nourished and hydrated. Heck it could even be used in fun stuff!

Now, in doing research, I found this chart: http://www.lifeexpectancy.org/articles/GrowthCharts/B4.pdf. According to the chart, for a boy with his level of mobility, he is in the 90th percentile for weight at 29 lbs (13 kg). He’s even in the 3rd percentile for weight in the regular growth charts. So does this mean he is well nourished? I would imagine so?

By the way, there are different charts based on a child’s mobility. If you want to see all the charts, you can see them here:

http://www.lifeexpectancy.org/articles/GrowthCharts.shtml. There is another chart for kids with CP published by Kennedy Krieger but apparently this one is more current and with a greater number of children involved, so it should be more accurate.

Going back to the weight issue…what do you think? What are your experiences? I would be so grateful for any insight you guys could offer!

* Nathan has a nasal and ear infection. He started running a fever today so I took him in to the doctor and lo and behold, that’s what’s had him throwing up and having issues. He’s on antibiotics now. After his first dose of antibiotics he immediately looked better so I think he’s on the mend.

* He’s now 29 lbs, but the doctor thought that he’s just way too thin. She asked me to make an appointment to see her so we can discuss the possibility of the G-tube. This thought has been going through my mind non-stop for weeks so it’ll be interesting to get her feedback. The appointment is in 1 month, which is perfect as it gives me time to try Kelly Dorfman’s formula to see if we can get him to gain weight.

* Nathan’s immune system seems to be acting up again. He was so healthy for so long, but something’s out of wack and I can’t seem to figure out what. I made an appointment for him to see a homeopath that came very highly recommended. I hope that she can help him. The appointment isn’t until mid October.

* In the next month we are having the IEP with the lawyer, an appointment with a dentist and a cranio-facial surgeon (to check out his palate), a fitting for a new wheelchair, an appointment with the doctor to discuss the G-tube, the homeopath, as well as Dr. Blumenthal who is a DAN doctor who also works with reflex integration. Phew, I’m tired just thinking about it. But I am glad that we’re moving in all directions.

* Belle is doing great. She is now swimming underwater on her own (I can let her go as she swims to another person and she’ll kick her way over). She’s doing other amazing things, but I’ll wait until the 17th to share more, as that’s when she’ll be 5 months old.

* Upcoming posts: more about Feldenkrais and the difference between Feldenkrais and ABM, Rolfing, Nathan’s media detox.