I usually try very hard not to whine on the blog, but today I am so frustrated I could scream. So, here goes...
So, we get to our appt today (you know, the one we have been waiting FOUR months for-- the one with the 15 phone calls, faxes, requests for medical records, etc), and the doctor is in traffic so he is 45 minutes late. Umm, I got my 2 year old up an hour early and sat in Boston traffic for 90 minutes for this. I understand that these things happen, but I could tell that we were not off to a good start.
Anyway, he is very nice and seems very knowledgeable, etc. A few minutes into our conversation, he asks if she has ever had an MRI, because he would love to see it. Ummm, yes, she had an MRI, and you should have it. Nope. He DOESN'T HAVE IT. Without it, he really can't tell us much of anything. Can't answer the list of 20 questions I have been preparing. Can't give us recommendations, explanations, can't allay any of our fears, can't help us with anything.
He SHOULD have had it because the hospital where she had the MRI sent the disk to Children's. They uploaded her head u/s and CT images, but not the MRI images.
Here's the part that kills me. I HAVE the disk at my house that has the MRI on it. I didn't bring it to the appt because when I called and asked if they needed it, the nurse told me, "No, we have the images in our film library. You just keep your original."
I called them back when we got home and I confirmed that I did, in fact, have the MRI images and they askedme to mail it to them, which I did this afternoon. Now, we wait for the neurologist to review it and then call me over the phone to discuss where to go from here. Can you even imagine our frustration right now? I have had nothing but wonderful experiences with Children's Hospital, so I am in shock that things went so badly today. I mean, how could they not have it? How could we have waited four months for this appointment and basically come out of there with the same knowledge we had going in?
The only good that came of it was that he said he would put something in writing about Mairead needed pre-school services, so that should help at her IEP meeting.
He told me that she does have some hyper-reflexivenss on her left side (often a symptom of stroke victims). He also said that there is very little research about neo-natal stroke victims, but that 70% or more suffer lasting delays/deficeits that range from gross motor to cognitive and anything in between. I KNOW that!
So, now we wait. Again. After he sees the MRI, he thinks he will recommend a follow up MRI and possibly other tests, but he can't really say until he sees it.
So, I make an appt just to have one in the future for follow up, etc, and the next one they have is OCTOBER 5th. So, that is four months from now... after waiting for months for this one and get NOWHERE.
I know that Mairead is doing very well and is healthy, and every time I go to Children's, I am reminded of how lucky we are that our kids are as healthy as they are. But, every month that goes by is another month of the ONE and only childhood she gets, and I feel like we are missing out on it because she is not experiencing things the way that other kids her age do. And, she cannot always talk to us and share what she is thinking. You know how people always tell stories about the cute thing their two year old said? We want those stories, too. We want to know what is in her head and what cute things she would like to say to us. We were hoping that today might help us make more steps on the road to that, but we were very disappointed.
We will talk to the doctor through email/phone calls, so it's not like we are going to sit around for 4 months and get nowhere, but still...
I am beyond frustrated/sad/angry. We did like the doctor a lot and as long as he is willing to move things forward over the phone, I am fine with not actually seeing him until October. Dragging Mairead into Boston is not super fun. Although, she was awesome today. The only part where she really gave us a hard time was when the doctor took off her shoes to test her reflexes. I think she thought he was going to steal them. She kept saying, "Shoes on, shoes on!" She was awesome, though, so that was good.
Thank you so much for the support and the messages- I wish I had something more promising or informative to tell you. I will update you with anything I hear.