Wednesday, May 7, 2014

We saw the neurologist

This post is mainly for me. I log this stuff so I can remember the details. It'll be a little dry and possibly a little snarky. I'm not in the most fabulous of moods today.

Daisy's appointment was at 10:15AM. We showed up just a little after 10:00AM. Bio Mom didn't roll in until closer to 10:30. And yes, I was praying she wouldn't show. I can't help myself. I'm just not in love with this co-parenting stuff this time around. I pushed for it like crazy with Pumpkin because I thought her mom was going to step up. (I didn't know there was a physical abuse problem in their family until 9 months in to the case.) But with Daisy...it's just awkward as Hell and I hate it. I do it. But I hate it.

I went solo to the appointment today - no social worker. The waiting room is so small. The doctor is so peculiar (all brain doctors are). And I just didn't want to tag on another person this morning.

We got called back to the room around 10:45 or so. Bio Mom held Daisy and they interacted in a normal way. I did the bulk of the talking and thankfully Bio Mom didn't contradict me with anything. The way this neurologist works is that you go back to the room and a nurse goes over EVERY single detail and concern. This nurse types it all in to the computer summarizing any concerns and reporting on development, behavior and any seizure activity.

Then the doctor comes in the room. The doctor sits down at the computer and reads what was written. Most of the time if he asks a question he directs it at the nurse...NOT me. Like I've said before, it took him an entire year when I had Pumpkin before he'd talk to me. It is the most bizarre of situations. But it's how he does things. I have it on good record that all brain doctors are a little strange so shopping to find a new one doesn't seem to be worth the trouble since I am established with this doctor and he does trust me enough to talk to me some now.

Today Dr. BrainMan read through Daisy's file and seemed pleased with her progress. He then started assessing her himself. He got up and walked in front of Daisy from side to side. Because he made noise, Daisy was able to audibly localize him and she tracked his movements. When I made mention of this, Dr. BrainMan went on to explain that because of Daisy’s young age, we are not to concern ourselves with how well she can or cannot see. We simply do not know how much sight she is going to recover.

Bio Mom was paying close attention here. I know she was tickled pink to hear Dr. BrainMan say, "Daisy can see". That's all she focused on and then she checked out so to speak.

Dr. BrainMan went on to explain that vision is a two part process. First part is overall eye health. Then it is up to the brain to decipher what it’s seeing. It is in this second part that Daisy is “stuck” if you will. We don’t know how much brain damage she suffered to the connection between her eyes and how she processes what she can see. And because of her young age, nothing can be determined in this area yet.

I knew...I just knew that Bio Mom wasn't paying attention to the "brain damage" part.

Sure enough she walked out of the doctor appointment and immediately made a call to Mr. CW demanding that Daisy go visit a real eye doctor. She's convinced Daisy can see and that's all she heard this morning from the neurologist.

She didn't even stay around to ask about the extended EEG that was ordered. On our way across the hall to schedule that she casually asked ME (not the doctor), what an EEG is. She didn't stay long enough to make the appointment. While standing at the window waiting for the schedule, Bio Mom looked at her watch and said she had to go. So...she was late to the appointment (granted, only by a little bit) and she had to dash out before everything finished. But on paper she looks good. She came to the appointment!

Mr. CW and I talked for awhile. He knows the reality of Daisy's condition. He told me that he pretty much just let Mom rant. If Bio Mom happens to involve her lawyer then we might have to *do* something. But for now, nothing is going to change.

Just to be on the safe side I drew up a detailed email going over all the information I have on Daisy's sight. I covered all the doctors we've seen, the diagnoses Daisy has been given and when our next appointments are. I also reiterated the "two parts" of being able to see: Daisy's eyes are healthy but because of the brain damage we do not know what she's actually able to see and process. I then made mention again that we know she's visually impaired due to the specific ways in which she is behind developmentally.

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Foster care sucks!

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The issues *I* discussed with Dr. BrainMan focused on the constant jerky movement on the left side of Daisy's body and her sleep issues. Dr. BrainMan made a LOT of sense when he said he wants to deal with the possible seizure side of things first as the two are likely related. He said, "We could do something about the sleep problem but that wouldn't address the seizure concerns so we'll address the possible seizure activity first and see if that resolves the sleep problems."

I am to give her a double dose of her seizure medication tonight only. I have NO IDEA why a one-time increase in meds will make a difference in the long-run but that's what I'm supposed to do.

Daisy is scheduled for an extended EEG next Friday. We'll be in the office together for 12+ hours. Bio Mom is not going to be allowed to attend this procedure as the laboratory has a strict policy of only one adult with the child and Bio Mom isn't allowed unsupervised contact. Mr. CW isn't even going to make in an option. For that I'm grateful. It will be better for Daisy to be with me for that vs. being with her Bio Mom anyway. Contact with Bio Mom stresses her out horribly. She won't sleep today and she's incredibly fussy after spending just over an hour with Mom at the doctor's office.

So, I really didn't get any answers today and nothing changed. But we'll know more after the EEG and we see Dr. BrainMan again in two months. If the double dose of seizure meds does happen to make a difference tonight, I will probably call the office to see if an increased dose of meds in general is in order.

As is typical with special needs kids, we just have to wait. Wait and see what happens next.

1 comment:

grkanga said...

Thank you for updating so clearly and concisely. We are all holding our breath for Daisy and you/your family.