It has been an adjustment again these past 6 weeks as we try to find a new rhythm and routine for our evenings with Nathaniel's bedtime shots. It took us about 8 days of fighting before he got used to them, but now 98% of the time he sits and waits patiently and tolerates my administration of his shot. He prefers to have them in his "bum", probably because there is more fat there, but tolerates "leg days" as he calls them. The good news ... It's working. From age 2 to age 3 we spent the year hovering up and down in a 3 pound increase and waded around at 25.5 lbs. He has now received 6 weeks of daily injections and has gained 1.5 pounds and grown 3/4". To put this in perspective. He spent 6 months trying to gain 1.5 lbs last year and only grew a total of 3/4" from age 2 to age 3. This is HUGE for us.
We also finally got news this week about his MRI results. No big surprise that his brain is completely normal and there are no lesions present. Good, good, good is all I can say about that. We did discover that his pituitary gland is small. So what does that mean, exactly? Well it is most likely the reason behind his growth hormone levels being low - the pituitary is small and not producing enough growth hormone. The pituitary also produces other hormones - thyroid, cortisol, and others. So far Nathaniel's labs show that all his other hormone levels are in the normal range, so we don't have to worry too much, but we do have to keep an eye on those other levels. If those start to drop too, he will have to start treatment for those as well. I keep praying that this is all that it is and we just keep moving along in the right direction, but this new information brings that worry back to the fore-front. So hard to be a parent and so hard to be the parent of a child with extra needs.
While Nathaniel is finally starting to move in the right direction, we now have experience with all of this and have to start being cautious with Andrew. He went in for his 9 month check-up and dropped from about the 40th percentile for weight to the 20th percentile. This is well within norms and is even normal at his age due to increased mobility and activity level at this age. However, we have a family history, so we have to look at things more closely. He had a bunch of blood drawn yesterday and we are awaiting the results before we make any decisions of what might need to be done next. He is much more sensitive to foods than Nathaniel was at that age. He has reflux and still needs his medication (we now have Nathaniel on a reflux medication which seems to be making a lot of difference for him too). He has eczema just like his daddy and we don't know yet if it is exacerbated by foods. I pumped and froze a lot of breastmilk early on in order to give him that extra mommy milk for as long as possible. We have been suggested to try gluten free (which we tried with Nathaniel for a bit) and dairy free. Not sure we will start that quite yet, but if his weight curve continues to drop and we don't have another reason, we'll probably head down that road.
It's back to school for me and lots of changes at work, but that is a topic for another day. It is also back to school - and a new preschool - for Nathaniel and I promise some pictures and "Nathanielisms" from his beginning of his school career soon.
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