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Friday, April 24, 2009

Update that I will be Updating Soon!!

Sorry everyone i still have not posted pictures or how the appointment went! I have been so busy and this site is blocked at my work so i have to do it at home. But when we get home there is always something going on, whether it be Tyler's t-ball or my running class. Right now Michaels son Jaylen and Tyler are blaring some video game. lol . I am setting time aside tomorrow to add pictures and updates!!!

Wednesday, April 15, 2009

Almost the Weekend!!

Whew this week at work has been super busy. I also started my running class this week. I go every Tuesday and Thursday night and I am training to run 5K. I use to run back when I was in high school. I was actually pretty good, but decided to quit. Lol I look back now and wanna kick myself. But thats okay, we live and learn :-).We had to run a timed mile to get placed in our groups. I was actually able to run the whole mile. haha. I was really nervous, I didnt think I was going to be able to do it because I seriously havent worked out in well over a year. I finished in the top 5 so I was pretty proud of myself. Well enough bout me. lol. Bryleigh has been spitting up alot this week. I do not think it has anythng to do with her shunt because she does not have any other symptoms of an infection. The neurologist office called back yesterday and set up an appointment for this Friday to meet with the doctor. He has some things he wants to discuss with Michael and I. He said we did not need to bring Bryleigh. So I am very nervous/anxious to see what he has got to say. I will update when I find out. I am also going to upload pictuers. The easter bunny pictures did not turn out as I had hoped for them to. Bryleigh kept turning her head to the side so you really cant see her very good. Tyler has the biggest smile ever, he was so happpy to be holding a real bunny. I wanna get him one now, Michael said no. lol. But I still love the picture!!

Monday, April 13, 2009

Doctor visit went good today. We got great news. There is no damage to her nerves. They dilated her eyes and did not see any damage to anything, everything looks normal. (I cannot remember any of the terms of what he looked at :-)) He however was not able to tell me if her vision was impaired. He said he would like to see her back in 6 months and maybe when she is 1 year he will have a test done where they put some electrodes on her head and flash a series of lights and measure her brain activity. I was thinking about this, and I was not sure if this is something that should be done sooner, say at 6 months of age? If a problem can be detected, we can do activities with her to stimiluate her eye sight. Just a thought. I do not know much about visual problems, but from what I have gathered some of the doctors have already done this test with the babies. Anyone have this same test done? If so, at what age?

Bryleigh has been smiling more and making alot of noises. It's so cute. She also has been doing really good at pulling herself up when I kind of pull on her arms.She really likes being in the sitting position. When I lay her back down she tries to pull her self back up :-) She is so adorable. Everytime she makes a noise or gives me a smile it makes me so happy! She is such a blessing!

Matthew's mommy,

Thanks for commenting on my last post. I'm not exactly sure how everyone responds t questions from their posts? Bryleigh did have a genetic test done after birth. It was called a chromosomal micro array test. Everything came back normal. I still havent heard back from the neurologist. I will be sure to post as soon as I do. I have read through yours, and Elisabeth's blog and it does seem like Bryleigh is alot like them.

Wednesday, April 8, 2009

Opinions Please

Okay I uploaded some pictures. We have three dresses and three events she can wear each to, but I cant decide which dress to which event :-) The three events are:

A)Pictures with live Easter Bunnies
B)Church Saturday night
C)Easter Lunch at my moms

Now for the dresses:


1)



2)



3)


So which dress seems appropriate for which event :-)

Also, here is a new picture that we got of Bryleigh that I love!

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!!