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Tuesday, April 7, 2009

Update

Yesterday was Bryleigh's first apointment with the neurologist. He was very thorough in explaining things to me. He said that Bryleigh had several brain anomalies. I knew of some of them, but her neuro surgeon had not discussed any of them with me, I only knew of these things by requesting MRI and CT reports. At the appointment the doctor had all the notes from the neuro surgeon as well as the MRI and CT reports, so he was able to go over and show me where these things are. He said he thinks Bryleigh has significant vision problems. She did not track any object for him and that her bran anomalies are all in location that affect vision. He also said that she is behind for her age. I knew this though. He also said that he thinks she will have significant delays. He said when he says delay, he doesn't mean a delay she will catch up later,he means a long term delay. So overall the appointment was a bit depressing, but at the same time I really got alot of information. He called me back later that evening and said that he pulled up her actual reports and found something that none of the other doctors have mentioned. He said he did not want to discuss this over the phone and that he had a little more research to do before he wanted to talk to me about it. So now I am kinda left hanging here. lol. He said that it was something that could be that cause of the hydro, absent septum pellucidum, and agenis of the corpus calossum. In her first MRI scan it said that the corpus calossum was barely visible, but the doctor thinks that it is not there,by looking at the two different scans. So I have been a mad woman on the Internet trying to find what it could be that he thinks it is. So if anyone has any thoughts, let me know :-).He also said he is going to write my pediatrician a letter because he feels that the communication amongst the doctors is not that great, and that my pediatrician is not really communicating things with me good enough. He said that if his letter does not help, that he will recommend me a different pediatrician if I want one.

While at the apportionment he was asking me about some of her doctors, and what they have said and even their numbers. I kept getting the doctors confused because there are so many. So today, I put together a pretty little binder with a tab for each doctor, scans, etc. I put a cute little cover page and everything. I am really proud of my neatly organized binder. lol.

I will put some new pictures up soon. I haven't uploaded them to the computer lately but I will do that this weekend probably. I am taking Bryleigh and Tyler Friday to get their picture taken with live Easter bunnies. I cant decide which dress to put on her. I will put a picture of all three and you guys can let me know which one is the cutest. :-) I am very bad about making decisions. lol. So i guess I will be uploading pictures after all.

Monday we take Bryleigh to the ophthalmologist. I am really anxious to see what they say. Wish us luck!!

3 comments:

The Soldatke family said...

I can't remember if I have commented on your blog before, but your sweet Bryleigh sounds a lot like my Matthew and really even Elisabeth (if you read Lisa's blog). Matthew is missing his septum pellucidum, his corpus collosum and they have linked these things together with the poor vision (Matthew's eyes are perfect, but his little brain cannot interpret what he sees very well) and they call it septo optic dysplasia. They usually have a missing septum pellucidum and have poor vision. They also can have problems with there pituitary gland and seizures. They can have some or all of these issues (Matthew was blessed with all of them-:( )
Did she maybe have genetic testing done while in the NICU that no one told you about?? Matthew's initial genetics were normal...but they did initial testing and found a very small chromosomal deletion that caused all of Matthew's anomolies. That would maybe??? be something. I don't know...I'm just grasping at straws really...I don't know what he wouldn't tell you over the phone. I don't want to get you worked up...just trying to brainstorm....
No matter what they say, Bryleigh is a beautiful little girl..and no test or result will change that. Matthew is significantly delayed also..and I'm not gonna lie to you, some days it really sucks, but we love this little guy and he is so strong. So enjoy having a baby a little longer than most people get to enjoy that...and enjoy her even if people want to give her conditions a name...and while the labels can be helpful to the community...it's nice to know at home that she is just Bryleigh. That's what we try to do with Matthew.
I hope you have some answers soon. Good luck! and let us know!

Carla said...

I'm sorry to hear that your appointment left you with more ?? than answers, but it sounds like the nuerologist is really wanting to keep everyone in the loop. That is awesome! The binder is also a great idea- we have one for Little Man & I lug it to all his appointments. I also write down any ?? I have and the dr. answers- I can't remember how many times I've been thankful I remembered to do that!
I agree with what Jill said, labels are helpful in the comunity, but at home she she your baby. I also am enjoying having a baby a lot longer than other moms, I see it as blessing since they grow up so fast anyways!
I hope you get the answers you are looking for, please let us know & as always, more pictures! She is ADORABLE!!!!!

Kristen said...

Cayman is also missing her corpus callosum and septum pellucidum. I remember when I first learned of her brain malformations it freaked me out and I did the same as you, madly researched it. It is how I "met" Lisa through Owen's webpage. I had read that Elisabeth is missing those parts of her brain too.

Cayman's vision seems to be right on track according to the Ophthalmologist. She does have a slight nystagmus to her left eye. That is where it shakes a little when she is focusing on something. It doesn't do it all the time. We have been very blessed that she is doing very well with her vision and no strong issues with her pituitary gland. But I really do believe that is because of the care she receives from the Naturopathic Doctor that I've talked about before. He has given Cayman supplements over this past year to help her eye and brain development, and she keeps amazing the doctors with her improvements.