endocronology

It had been 7 months since our last appt and Nathan gained .2 pounds. 7 months and virtually no weight gain. Unbelievable! He grew about 2.5 inches so he is skinnier than ever. After waiting over an hour to see the Dr., she spent 5 minutes with him and said we are still in wait and see mode. Libby said she wishes God would have made Nathan to grow faster. Me too Libby, me too.

Still struggling

So it has been two years since we began realizing that Nathan is different than other kids. Two years since we noticed the changes in his appearance and I still feel like I am nowhere closer to acceptance. I still look at him on a daily basis and feel sad when I see those differences especially as they become more pronounced. Last week it finally happened. A little boy at the pool, probably 3 or maybe a young 4 asked his mother what was wrong with "that little boy." "Why does his face have all those veins." It was not as devastating as I had anticipated. I guess I had prepared myself. I just know that I can't be sad on a daily basis for the rest of my life right? That can't be possible.

I just keep thinking we are in this bubble where the differences don't matter to other kids (except the little boy at the pool) but soon enough they will matter. And Nathan will have to deal with it as will Libby. They will both have to handle the questions and the looks.

Then I have moments of denial in which I think that if he would just gain weight he would look more normal. But he is not gaining weight and Mark and I are both beginning to accept that all the calories in the world will not get him to gain weight any faster. It is part of his genetic disorder it seems.

We got the prescription for biotin to hopefully help with his hair regrowth. He has a significant bald spot in the back of his head and it is thin elsewhere. I took a picture so we can compare. I looked at a picture of the back of his head from June that I had taken in the bathtub and it was not nearly as bad so it happened pretty quickly. I wonder if the sun has anything to do with it, but once again maybe I am in denial.

I wonder what it will be like when baby number three arrives. I wonder if having a "typical" child will ease some of my pain about Nathan. Then I start to worry that there is no guarentee of a "typical" child and wonder what in the world we are doing. Plus it is a lot to ask of a baby to help heal his or her mom's broken heart. So here I go again today, out into the world with my usual heavy heart and put a smile on my face. I feel like there are two of me.

Today is our appointment with Endocronology.

The Big 3!

Nathan turned 3 on Tuesday! His party will be on Saturday. He received lots of cards and gifts on Tuesday was so excited by everything!

As far as other things go, Nathan is still just 22 pounds at home with clothes. So, no progress with the additional benecalorie. That is still my biggest prayer for him, that he would start gaining weight. It feels like all of our efforts are vain. It is still difficult to tell if it is his caloric intake or a physical inability to gain weight.

Nathan is sick today, not sure if he has a cold or bad allergies but he has been choking and throwing up a little bit. Generally he is just not his spunky self.

Theraplay seems to be helping! Nathan can finally go down our back porch small steps without holding on to us. It is shaky and he goes down sideways but it is big progress. They are making him work hard which is great. It has definitely been worth the two extra appointments per week and will be easier when Libby starts Kindergarten.

We are working on trying to find a pharmacy that can compound Biotin for him to take for his "twisted hairs" That has been a wild goose chase so far, but Dermatology at CHOP has been helpful.