Valentine's Day dawned wintry and blizzardy. Sleety snow misted around us, and a chilly wind found the spot between my scarf and coat collar. At 7.30 am I was trudging through snow in inadequate (yet my sturdiest) shoes with the umbrella stroller strapped to my bookbag and a heavy Ellis in my arms, awkwardness compounded by the fact that he was wearing a million layers and a very puffy coat (in fact, we just call the coat "Puffy", as in "let's put Puffy on; we're going outside"). We met up with my MIL who had valiantly slid her way over to our train station, and took the express train to CHOP (the children's hospital of philadelphia) for Ellis's appointment. Last May I had called to make the appt and was put on the waiting list. In Oct they called me with a scheduled appointment for today. There was no way a little snow was going to stop me. We had an appointment with the geneticist to, hopefully, find out why he's deaf.
When meeting with a genetics specialist was first presented to us as an option, we didn't think too much about it. For one, we didn't mind that Ellis is deaf, and two, we don't mind if we have more deaf children. But since there weren't obvious reasons for his congenital deafness, such as, family history or illness, we were advised to go ahead with one to rule out any other possible problems that may accompany hearing loss, which seemed reasonable enough, and insurance covered it.
This was a stressful appointment for me. Probably more stressful than the MRI last June with its sedation and scariness. First I had to gather all his medical records from in utero on, which meant a lot of time on the phone and trying to get faxes done. And I find it difficult to spend that kind of time doing serious paperwork, because I don't have it! (the time, that is). And I was worried that I would do something wrong and they wouldn't have the right information, which is kind of silly, but nevertheless, I was kind of stressed about it.
Then there was getting to the appointment, which had us moving a little earlier in the morning than usual; so I was on edge to get us out of the door on time. I wasn't too worried about the snow until I was actually in it and all of a sudden realized that I don't have snow boots and hadn't occurred to get any, since I've been living in the South for the past 10 years and forgot what winter can really be like and oh no! my feet are wet and cold. I knew the train would be running, so all I had to was get to it.
Then the actual appointment. I didn't know what it would be like or what they would do in order to have a genetic evaluation, which seemed so tantalizing exotic. They did a brief physical examination of Ellis. Took our family medical history, for which I was especially grateful to have my MIL there for so that she could account more fully than I know for Chris's side. It's amazing what they were able to tell from that. With Ellis's physical evaluation, they were able to rule out with a degree of certainty any syndromic cause, which comes with a package of other problems. But then they needed blood and urine to do the actual genetic analysis.
Yea. Blood and urine from a 20 month old. The blood part was short, traumatic, over, and soothed with cool stickers. Very scary to see the tiny needle in my boy's arm, but he was a trooper. Then a urine sample. So how do they that? They give you a sack with adhesive around it, and you stick it to the baby's bum in such a way that they will pee into the sack. Sound like fun? Yea, that's what we thought, too.
I had given him a sippy cup and juice box, so I knew he was ready. But I think it was too weird for him. I felt bad, because I knew that it must be dreadfully uncomfortable, so I took it off and let him play free on the examination table, cup handy. Well, he wanted to play with the cup, and I was stupid and let him. So by the time he started peeing, I couldn't grab the cup in time, and there was pee all over the table, and he walking in it in his sock feet. And, of course, I don't happen to have an extra pair of socks with me. At this point, I was about ready to lose it. Between exhaustion and the need for lunch, I was shaking and desperately wanted this to be over. My MIL came to the rescue. She went back and got another sack and another cup. I put the sack on a little more comfortably, put a diaper on over it, hoping it would feel a little more normal down there, and took his socks off. We went down to the cafeteria for lunch, and I cuddled a very sleepy Ellis and gave him another juice box, hoping he would relax enough to pee.
Down in the cafeteria, we bumped into another family we know from PSD whose daughter is in Ellis's class. She was there for an ENT appointment. Polite begging obtained us a loaner pair of socks; thankfully, they had come prepared. After awhile, I took Ellis to the restroom to check our progress. Bingo! The restroom didn't have a changing table, so I just had him stand there while I took of his diaper and pee sack. I needed to put some it in the sample cup right away, because it was an open sack of hard-earned pee that I didn't want to lose. So I quick set about doing that, and Ellis is standing there with his fleecy pants down by his ankles, and wouldn't you know it, he pees again, all over his pants, which thankfully were absorbent enough to protect the borrowed socks. Well, I did have an extra pair of pants.
So to shorten the story, as I'm sure you're all absolutely riveted by my child's bodily functions, he's cleaned up, the sample is delivered (and I run to more friends from PSD), and we head home. Poor baby was so tired and actually fell asleep on my shoulder on the train, and didn't even wake up when I put him in the carseat in my MIL's car at the station.
It was still snowing and the road's weren't great, but driving into our driveway with a slight incline at its entrance, my MIL spun her wheels and couldn't really get up. There was a lot of yucky slush. Well, I was afraid that the slush would freeze and that Chris wouldn't make it into the driveway when he got home frome work later in the evening. So I go put on his boots and shovel that entrance to our parking lot. Well, I shoveled for quite some time, made enough progress for my MIL to get up and into it, but I didn't deal with all the slush. It was incredibly difficult, because the slush it very heavy. And I'm paying for it today with a very sore back (love sitting up against our radiators!) and legs and knees. And then all my work was for naught anyway, because it still kept snowing and it was covered again, and then around 9.30 pm someone came with a snow plow and plowed our driveway. Yea, I felt like a loser.
So, it wasn't the best day ever, but there were a lot of things that made it better. I was really glad for my MIL's help and company. I don't know why it stressed me out so much. I think this whole appt was kind of focal point for me to channel other stressors in my life. Since I got home and settled I've been crying. I'm so exhausted (so go to bed, why don't you, instead of writing mega, super blog entry). I cried myself to sleep last night. And I cried all evening tonight. Poor Ellis. At least he thought it was hilarious every time I blew my nose.
We did manage to celebrate Val Day a bit today at a party at a church friend's house. Ellis and I were both a bit tired to really get into it, though. But we have a busy weekend ahead. And with the aid of some nice tea and some incredible Lindt chocolate a friend brought from Switzerland, I think I'm set to sleep...for a little while, until somebody decides he wants company (somebody short and cute and who shall remain nameless).
