** WARNING - LONG POST **
We had a slew of doctor's appointments scheduled today. Rather than make the drive back and forth multiple times a week or month, if I have help, I'll make appointments back to back on a single day. And while this is never the easiest thing to do for the boys and their moods, it does save on gas and my time off of work.
So today, Oma and I piled the boys into the van around 7:45. We made it to the hospital in good time (the ice from the past couple days is gone). Will needed to get some blood drawn for his nephrologist. She wanted to make sure that all of his electrolytes were in order. Mainly they are concerned about his potassium level, because the blood pressure medication that he is on can sometimes make the body store too much of it. Thankfully we had a good phlebotomist, and they were able to complete Will's blood draw with just one arm stick. He wasn't too happy with us for sticking him and holding him down, but it was a lot better for me as the mom to only have him stuck once.
After the blood draw, we were scheduled for a clinic that is set up to keep an eye on former-NICU babies. We go about once every six months, and they look at development, communication skills, and hearing. Our pediatrician also looks at these things more often than every six months, and we have a lot of other -ologists and -erapists... but I keep going because I like the couple extra sets of eyes on the boys.
Almost immediately upon arrival, we were told that the cardiologist called and asked if we can get Will's echocardiogram done early (we had an appointment right after the NICU clinic). Will was scheduled for the echo also by the nephrologist. Apparently the blood pressure medication that Will takes can also have negative affects on some organs, particularly the heart. So once every two years or so, they want to make sure there has not been any heart damage. Although we were doing the cardiologist a favor and coming early, we still managed to wait for 30 minutes before they called us back.
An echocardiogram is basically an ultrasound of the heart, with a little bit of an EKG mixed in. We were concerned that the tubing from Will's shunt was going to cause a problem with the ultrasound, but everything worked out well. Will did not like the ultrasound though... he cried whenever the tech doused him with more ultrasound lube. It was slightly dramatic, and I sang "Michael Row Your Boat Ashore" like 800 times to try to keep him calm. Thankfully, everything with Will's heart looked wonderful! No damage and no heart muscle thickening.
While we were gone, Oma and Luke went to the ENT and Luke's hearing was tested. He passed with flying colors... this wasn't a surprise, considering the kid can hear the opening of a bottle of soda from 25 yards and comes speed-crawling to get the bottle.
Once Will and I returned from the cardiologist, it was feeding time. When Luke was done, I went with him to see the occupational therapist. She does a sort of baby standardized test called a Bayley, where she presents him with all sorts of challenging toys and situations, and sees how he reacts. Once we let Luke turn on and off the lights for a couple of minutes, and open and close the filing cabinet for a while, he was ready to go. He did pretty well, though it was odd for me that some of the things he does so well at home, he sort of freezes on when out of his element (like playing with blocks). The OT was impressed with Luke's vocabulary and how now he is this-close-to-walking.
The last time we saw her was when we realized that Luke had a developmental delay of 2-4 months, and that appointment is the reason he started seeing a play therapist. But guess what... today, Luke showed us all that he has overcome his former preemie delays! The Bayley showed that he was at the development level of a 22 monther!! Considering the boys will be 2 in March, this is great news! They didn't even have to use his corrected age (which would have put him at a little over 19 months right now). Way to go Luke!
When Luke and I returned to our exam room, the speech therapist, nurse practitioner and attending doctor were all doing some testing on Will. Oma told me that Will had his hearing test while Luke was with me, and that Will did exceptionally well on his hearing test. Cool!
The doctor tells me that she wants to talk with me a little bit about Will, and would it be okay if Luke goes with Oma and the speech therapist to see how he's doing with speech. I say sure. I assume that before I got into the room, she has examined Will. Here is our conversation (only slightly paraphrased).
Doctor: I think it is time that we start re-evaluating our goals for Will.
Me: What do you mean?
Doctor: Well, babies like Will... babies who have significant motor control issues and visual impairments... multiple disabilities... they just aren't able to do all the things that we want them to.
Me: Yeah, I know that. But we work hard with his therapies on a regular basis. He's making quite a few significant strides.
Doctor: I think its really important that you get him involved with an augmentative therapist [assists with communication for kids with special needs] and that you make sure that all of Will's service providers are working together.
Me: We have worked with a communication therapist as a part of our therapies. And yeah, I have arranged for quarterly meetings with all of his service providers. It took a lot of work, but I finally have everyone on board.
Doctor: Babies... like Will... with so many disabilities... you really need to make sure that he's getting everything he needs. Its a lot of work and a lot of heartache... we have a lot of concerns about his multiple disabilities and his ability to function. We don't think this clinic can do Will any good moving forward.
At this point, I totally zoned out. She kept talking about something.
In my head, I started freaking out... what other bad news could she tell me? Will has recently been seen by his ophthalmologist (who thought he was doing really well), as well as the physical medicine/rehab clinic where all the children at UNC who have cerebral palsy go (and he was happy with Will's recent increased level of activity). What did she see when she examined him that made her so more concerned than they have been?
At some point, she realized that I was crying and not listening to her anymore, so she got up. She went over to where the nurse practitioner was feeding Will on the exam table. And then she started to examine him.
As my friend at work says... just let that marinate for a minute.
She gave me that whole spiel about Will and his needs, and his difficulties and his multiple impairments without having laid a hand or eyes on him.
And as the nurse practitioner ran through her battery of tests, Will did wonderfully. The nurse practitioner squeaked with excitement. The doctor looked impressed. And as the speech therapist ran through her battery of tests, Will rocked her tests. The doctor looked happy and slightly intrigued. And as I explained about the recent appointments with ophthalmology and physical medicine, and the nurse practitioner and speech therapist gave Will an "atta-boy," the doctor proclaimed:
Will has really come so far in the past 6 months! You all are doing a wonderful job and we are so proud of him. He's doing so well with his eyes, and since he got his new equipment, he's taken remarkable strides with his level of activity and interest in the world around him. Wow...
I was so pissed. And shocked. Was she reading me some kind of doctor script when we talked before she examined Will? How could she say all of those things, and then change her tune 100%? Flabbergasted is an understatement for how I felt. So much for the accuracy of the "Will Slavik Cliffs Notes" that she read prior to seeing us...
I didn't even look at her again after she said that. I really just wanted to get out of the clinic. The best part of seeing her was when they told us that the boys have aged out of the post-NICU clinic. We don't have to go back again!
So really, all in all, it was a good day. Will's heart is in good shape, Luke's developmental delay is gone... but for some reason, that doctor really set me off... made me truly question if we are doing enough of the right things for Will. In my head, I know that we are. We do so much with him with his various therapies and doctors and Brainwave... maybe I am most upset that I let her make me doubt that. No one can tell us where Will will go, what he'll be able to do... the sky is the limit for our son, and we're going to be there, right by his side... giving him whatever he needs along the way. Its just goes to show you that doctors don't always know best... moms do.
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