A little piece of heaven

All of the kids were rushing to Nathan, fighting over who got to play with him first. They wanted to show him their lego constructions. The wanted to help him build his own. Nathan was so happy.

We were in his kindergarten class, where he is spending the afternoons in full-inclusion with 24 other 5 year olds. It was so exciting to see him in that setting.

Then I had to lift him to transition him to another chair, and the diaper popped out a little bit. One of the girls asked, with that child-like incredulous voice, “Does he wear diapers?”

I was dumb-struck, I had no idea what to say. A million thoughts went through my head but nothing stuck. So I was stuck simply saying, “Yes.” That’s it. No brilliant explanation, no interesting comments, no “integration” wisdom. Just, “Yes”. Nathan’s lovely teacher was there and she chimed in, “For now.” She said it with a tone of acceptance and firmness, closing the topic, making it okay for them.

I left feeling a little lost. What should I have said? I better get my story straight so I don’t get caught in the cold like that again in the future. What do you guys say when you get questions like that?

Yesterday I took Nathan to his doctor for a check up. He threw up at school so they sent him home, and he did look a little bit pale and out of it. The doctor couldn’t figure out why he was throwing up, but we took the opportunity to talk about his overall health and how to give him the best possible care.

Her first recommendation was to see a GI doctor about getting him on a G-tube. She feels this is the right time for us to take this step. Of course she recommended supplementing the tube with oral feedings, where we’d feed him his main meal orally and then liquids through the tube. I am not a big fan of this idea but I agreed to see a GI doctor to discuss.

Next we talked about his diet. We went back to some old test results where Nathan showed IgE allergies to dairy, wheat and egg whites. After his hospitalization last year I got so scared about his weight that I decided I’d rather feed him bad foods but have him gain weight, than for his body to be so malnourished that he can’t fight off illnesses. He is not a big fan of GFCF foods so he wasn’t eating too much, so that’s why I made that decision back then.

Now here we are, a year later, and honestly he’s been in worse shape eating dairy and wheat. He is still just as thin, still not eating very much, but he’s been way sicker this year than last year. So it’s time to go back to healthy eating.

As of next Monday our whole house will be gluten casein free. I am sure Izzy will benefit from this too, as she has chronic diarrhea.

Doc is also going to do some immune system testing, as well as more allergy testing and in depth bloodwork to see if we can figure out what else is going on with Nathan. However, the current theory is that he is micro-aspirating fluids and saliva into his lungs, and since there are many bacteria in the mouth, when they go into the lungs, they immediately cause inflammation and infection in the lungs. The problem is that a G-tube won’t help with aspiration of saliva, so even though it would help in some ways, it wouldn’t help in others and could cause other problems, such as infection and gas etc.

It’s kind of a complicated thing. So far we’ve avoided the “medical” approach and Nathan has mostly done well. It’s scary to think about opening the door to the “medical” world as it’s such a series of negotiations. You pay something to gain something.

So we will take it slow. For now, all we are doing is improving his diet, and seeing a GI doctor. Then the rest will unfold.

Happy 5 months to Mr. Gryffin!

In the last 4 weeks, our Gryffin has really woken up to the world.  He belly laughs all the time.  It doesn’t require much to get a huge grin and a cackle out of our love boat.

This month, Gryffin learned to roll!  He now rolls both from back to belly and belly to back.  Unlike most kids his age, he LOVES tummy time.  If I place him on the floor on his back, I will soon find him on this belly.  Now that he can roll both ways, he can move around and is starting to go after toys.

He is such a sweet boy.  He is happy all the time and most people who know him have never heard him cry.  He can entertain himself, play with toys, and simply BE.  He loves to laugh.

He’s a very expressive little boy.  His emotions are written on his face, from curiosity to happiness to wonder to sadness.

He loves being around his brother and sister. We discovered that if he’s in the car alone, he will cry. But when Isabelle and Nathan are with him, he is perfectly happy. They keep him company and he loves being around them.

This month he found his feet. While on his back, he’ll reach up and start grabbing them, playing with them, rolling around. One time he pulled his sock off his foot and started eating it. Did I mention that he’s a hand eater? He loves eating his hand and it’s his favorite source of entertainment.

While at Ihop this month he tasted pancakes for the first time. I’ve been making a huge effort to make sure he ONLY eats breast milk at least for his first 6 months. Given that I don’t produce much it’s been quite a feat. So up until about 2 weeks ago Gryffin had never tasted anything other than breastmilk. The other morning we went to IHOP for breakfast and I was struggling with all 3 kids. Izzy kept dropping her food, Nathan was crying for juice, and I had Gryffin on the table on his tummy. The lady from the table next to us asked me if I wanted her to hold him while I helped the other two. I said, “sure!”. So I cut up Izzy’s omelette and gave Nathan some juice. I looked over to see how Gryffin was doing and I saw this look of intensity in his face that I rarely see. I kept watching him and saw something in in his mouth. Sure enough, the lady had been giving him small pieces of pancake. I rushed over to thank her and grab him and her comment as she handed him to me was, “He sure has an appetite!”. I smiled, kept my mouth, thanked her, and made a mental note never to hand my babies to total strangers again 😉

This month he also started making bubbles with his saliva. He loves making noises and playing with his mouth and tongue and I can hear him “talking” to himself even when he’s playing alone in his crib.

This month he went to Disneyland for the first time and had an awesome time. He hung out in the baby bjorn and took it all in. Gryffin just goes with it, he didn’t get overstimulated, he just chilled in the bjorn, napped, even ate while in the bjorn.

It was a great month for Gryffin, with lots of activity, excitement, and happiness!