Max’s Story

Max, age 5

Where to begin? But, really, where to end?

I put this page here because I want to write it… I feel like I should write it. But I’m afraid I will never stop typing. There’s so much to tell. So, I think I will do it in segments.

The beginning

Max was born 10 days early on the first day of passover – March 27, 2002. It was a Wednesday… I remember that because someone (I’m not sure who) said “Uh-oh… Wednesdsay’s child is full of woe.”

Well, he’s not. But sometimes we are. But what parent isn’t? Right?

The funny thins about going into labor that day is that I had just seen the doctor on Monday… the baby hadn’t dropped. Nothing. No sign at all. “See you next Monday,” the doctor told me. So, imagine his surprise when we called him at 6 a.m. Wednesday. I woke up in full-on, contractions 5 minutes apart labor. Cris had just started a new job Monday. They knew he’d be calling in baby soon, but not that soon!

Anyway… Max’s birth was pretty normal. He did get a little stuck and they had to tug with the forceps once. He was little – 5lbs. 15 oz. His APGARS were 8 and 9. Fabulous. He did get a little meconium, and then had to be on antibiotics right away because I spiked a fever during the whole process. Upon delivering (well, reaching in and grabbing it) the placenta, they discovered that I had something called velamentous cord insertion. “Hey, wanna see something weird?” the OB said to the pediatrician. Basically, the umbilical cord was not attached directly to the placenta, as it should be. This could have contributed to his size.

Then he seemed to have trouble sucking and ended up with a feeding tube. He was in the hospital for 6 days (I was in for four thanks to fibroids). The even did an x-ray to check his swallowing… it was fine. On that last day, they were about to send him home with a feeding tube, and the pediatrician thought to see if he was tongue tied. I let him know this ran in my family. Sure enough, he was. One snip and he was sucking like a champ.

He proceeded to develop normally, even ahead of the curve a bit. But then he stalled out around 4.5 or 5 months. I knew this because I was in a moms group, and all the babies were born with a month of each other. the others were starting to try to get around and sit up. Max wasn’t. He just didn’t seem interested. He also seemed to conk out when he laughed really hard. We would later learn that this was cataplexy. So, we watched him and finally talked to the pediatrician at his 9-month check-up. The doctor said he had seen kids who do nothing and do everything at 12 months. So we gave him some time. He was doing more at 12 months, so we agreed to give him until 15 months. Again, he was doing more, but not much. He still wasn’t trying to go anywhere or sit himself up. He did babble a lot, though. And he seemed very smart. And he was social and affectionate.

The next phase

So, we did an MRI which showed he was low on myelin (white matter), but that’s about it. We took him to an ophthalmologist, who said he could see just fine. He was evaluated by early intervention specialists and they recommended PT and OT and a teacher who would come to our house. And it helped. By 16 months, he was doing the army crawl. And by 22 months he was crawling on all fours. He learned to sit himself up, but in his own way, not how the PT was teaching him. He stood up and balanced on his third birthday and began walking some. He fully used walking to get around by the time he was 3.5. But he still wasn’t talking. One day I wondered how much he could understand, so I asked him to give his binky to Scout (our cat). He looked at me quizzically and handed his binky to Scout. That was huge. I didn’t even know he knew her name.

To be continued…

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