So many appointments!

Having a new baby is hard work. Having a baby with a disability sometimes seems like an impossible job. For the first few months of my baby's life, we worried about how well he ate. And then we noticed he was favoring one side of his head. Great. I'd already had two babies who had torticollis. Babies in helmets, while heart-warmingly adorable, is extremely hard to deal with in the summer months. The last thing I wanted for my son was yet ANOTHER add-on, another thing to worry about, another thing to stay up at night and stress about. We went to physical therapy to get his head measured, and we got to work immediately. He had a significantly flat side, but if we were diligent with his therapy, we might avoid the helmet. So, every month, we worked on keeping a rice sock beneath him while he slept, while he played on his back, and made sure all of his toys were to his left. Some days he dealt with it well, and others, well, I was too exhausted to keep worrying about it, and let him be stubborn. Every time we returned to therapy, we re-measured, and the difference was going down. But one growth spurt got to him before I was fully committed, and the round side of his head grew much more than the flat side. His therapist said we had one more month to work with him before we needed to talk helmets. However, she also said he was due for another growth spurt. I needed to stay 100% on top of this, even if it meant waking him up to roll over onto his side to keep off the flat spot. I worked and worried...and finally, when the last appointment came, we saw that he was in the green! It was such an enormous relief...but it wasn't the end of our difficulties.

Eating was extremely difficult for him. Drinking from a bottle had never been a problem, but he couldn't figure out the spoon technique, and he had no desire to learn. He was drinking 7-8 ounces of milk every 3 hours, I could only pump 4 ounces, and was supplementing and pumping like crazy just to keep up. We started with oatmeal cereal. I made it extremely thin, and the first time he tried it, it seemed like he did okay, but every time after that, it drizzled down his chin. I tried feeding him orange vegetables to get him interested in eating again, like his pediatrician recommended, but failed. I broke and tried fruits, but to no avail. It was so frustrating, to say the least. Feeding my babies in their high chairs has always been such an exciting phase for me, but this was ridiculous. I dreaded feeding times, and honestly, grew resentful of his inability. I finally broke down and called to make an appointment with a feeding specialist. I guess he decided to rebel, because soon after the call, something clicked, and he FINALLY started eating. Most of it came out his nose--sometimes even becoming a game for him, but at least he was eating. I cancelled our appointment, and breathed easier...until I realized he needed to see the physical therapist AGAIN.

My baby has always hated tummy time. I figured he'd outgrow it, because he was going to be learning to crawl soon, but that wasn't in the cards for him. He rolled over only a handful of times by the time he was 7 months old, and still hated being on his stomach. So...we went back. He's finally learned how to roll over, and it's a good thing too, because he's now 9 months old. While having a mobile baby is not easy, having a stationary one who gets bored and upset is even harder. We're still working on getting him to transition from sitting to knees. I'm anxious for him to move around on his own so I can have a little bit more freedom.

Last month, he had surgery for tubes, and he's had a couple of appointments with his audiologist and ENT since then. Some days, it feels like I live in the hospital.

Update:
It's been about a month, and my baby still is not crawling. Two weeks ago, he learned to stand, although he is incapable of pulling himself up. We're still working on getting him to crawl, or to get himself into a sitting position from his tummy. We're making baby steps, but it's been slow enough that I finally broke down and called the Up-to-3 people for yet another set of appointments. I'm anxious to have this little guy learn to do things on his own, and our bi-monthly physical therapy appointments just aren't quite cutting it yet.

It's been exhausting and frustrating, but then he smiles at me with that precious little gummy smile, and it feels like I can go on for another day.