Sadie saw Dr. Wendy today for her 6 month checkup...well, sort of. PCH always gives a call a couple days before your appointment to remind you that you have one, and our call on Monday said we had an appointment with Dr. Ruane. WHAT?! So, I called on Tuesday and was told that the two special needs doctors (Dr. Shaw and Dr. Wendy) are so booked up that they have two new doctors helping, but Dr. Wendy will be accompanying Dr. Ruane. I think that's what she said anyway...she obviously didn't have a degree in communication.
We had a rough trip over there, lots of screaming, had a hard time finding a parking spot, late to our appointment (which, you know, then I was "punished" for by making me wait longer), I was a stressed out mess (and Sadie was worse) by the time they called us back. Then a doctor I didn't recognize walked in and Dr. Wendy wasn't with her. I probably sounded like a fool, but I told her I really wanted to see Wendy because she knows us and I don't want to start from the beginning with somebody new because I don't have the energy for that. She reassured me that Wendy filled her in on Sadie, and that we'd be able to see Dr. Wendy before we left. Whatever.
I proceed then with Dr. Ruane, and as soon as she asks me how Sadie is doing I break down and start crying. At this point Wendy would have hugged me, but I don't know this new lady and here I am sobbing to her about how my baby won't sleep and I am so tired and I just want things to change. Really, she's got nothing for me...do they ever? Will they ever? But we continue and I go down my list of questions and I'm starting to really like her and she's lovin' on my Sadie, and it all turns out okay in the end...until we have to get back in the car to go home.
First of all, Sadie weighs 16lbs 5oz and is 26.5 inches long!!! But her head is the same size it was at her 4 month appointment (I'll talk more about that later). She is healthy. No fluid in her lungs, no breathing/heart/eye/ear abnormalities. I asked about her hips though. She keeps her hips very tight (which probably has a lot to do with the not sitting yet) and her legs straight. We've been working a lot on this at home, but Wendy said that many HIE babies will straighten those hips so intensely that they'll pop their hips out of socket. We want to avoid this obviously.
I had a good talk with Dr. Ruane about starting solids and she said her and Wendy had talked about that and agreed that it was probably okay to start Sadie on stage one foods. Looks like we're going to start with some pureed butternut squash! I was told to put some in her mouth (I'll probably use my finger at first instead of a spoon because of her mouth aversion) and see what she does. I was told to expect a little tongue thrusting, but after a few tries she should be able to swallow it. If, though, she's not swallowing it easily and really still tongue-thrusting after about a week, then we stop and wait another month. So we'll try that probably this weekend. Brian is out of town right now and I want to make sure he doesn't miss this, it's sort of a big deal!
I also talked with both doctors about a new neurologist. Both of them recommended Dr. Williams, who actually happens to be our doctor when we're admitted for the big EEG. They said he's very nice, and Wendy mentioned she's been in family conferences with him and was very impressed with how he interacted with the families. Wendy also said it can be tricky switching neurologists, so she is going to try to get things going from the back end before we call and make an appointment. Honestly, I'm not too concerned about it. She's my baby, I should be able to see who I want! But I think it has to do more with insurance since the doctors are in the same practice or something. Whatever, we'll meet Dr. Williams in a couple of weeks and we can maybe talk about it then.
After we were done talking to Dr. Ruane, she went to get Wendy and when they came back she must have told Wendy about my little meltdown because she came armed with prescriptions. She said the best she could do about the sleep is to give her Adavan. We already have this drug, and we reserve it for drastic situations where there's been crying for hours and hours and we've ALL reached the end of our ropes and tapped out our resources. I don't like using Adavan because it makes Sadie sort of dopey the next day, it really takes 24 hours to wear off. I feel like if we used this on a regular basis, 1. Sadie would never learn how to sleep, and 2. it would stunt her development by dopng her up. So, I declined. The prescription was for 2.5 times more than what we give her now anyway! Wendy said she would have declined it as well. She told me it's easy advice to give, but hard to take and she wouldn't have taken it either. That made me feel better. It's not about me right now anyway, someday I'll sleep again, right? Someday?
And finally, I asked about the MRI. Wendy said there were a lot of big doctor words that she didn't really even understand, but the gist was that they see no improvement. Things aren't really getting worse, but they still see a lot of damage and that isn't healing. This news made my jaw drop. How could there be no improvement?! She can nurse!! She is rolling, and smiling and "talking" and we're going to start giving her solids!! But the simple fact is that her head is not growing, which indicates that her brain is not growing. Wendy did tell me, however, that she sees progress and that if Sadie is meeting milestones, who cares what the MRI looks like. That was a little encouraging. But I did go home with visions of wheelchairs and drooling and eventually dying from seizures at the age of 12 in my head.
I guess overall I should count it as a good day, there were definitely more good things than concerning things at this appointment. It's just that if we were to weigh them on a scale that MRI would outweigh everything by a lot. It shouldn't, but it does, and it's hard not to focus on that ONE piece of news. But life goes on. Sadie is what she is and we love her this way. And if her development plateaus or if she soars beyond everyone's expectations, it is what it is. This is the child God gave me, and I am thankful she is so healthy in so many ways. And she's cute too! Man, she's cute!