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!!

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.

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!

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!!

Neuro Surgeon Update

Bryleigh had her CT scan Friday. They canceled the MRI of her spine that was suppose to be done. The insurance would not cover it for some reason. But if Dr. Price feels she needs one then we will have it done later on. She did really good for the CT. They put her to sleep for like 15 minutes. Afterwards we met with Dr. Price to go over the findings. She said that everything looked good with the shunt. Her ventricles had gotten smaller, and her head size had not increased. However, she did see what she thought was a small arachnoid cyst. She said that normally these do not cause a problem, but it can. She is going to have an MRI in 6 months to see if it has grown, if it has, then we will have to discuss surgery :-(. Also, she said that Bryleighs hydro was not aqueductal stenosis. I had read of a procedure ETV that can be done sometimes with the aqudectual stenosis. So Bryleigh does not really fall into that category. But, her fourth ventricle is small so she could possibly still be a candidate. We will not do this if the shunt keeps doing a good job. But if for some reason it fails, Dr. Price said we could discuss having the ETV. Everytime I leave the doctor I think of a ton of questions that I wanna ask. We have an appointment with a neurologist April 7th, so I will write all my questions down and ask him. We also do not have to keep her at an incline as much as we were, I will still keep her at the incline at night to sleep, but since she likes laying flat, i will be able to let her do that more.
Bryleigh is starting to track objects more! I think she was just delayed a bit. I have seen her smile, but not at me. Lol. We will get there. Her therapy is going good. She really tries to hold her head up. She has started sleeping all night!!! She goes to sleep around 10 and wakes up for a bottle about 6. This is when i get up to get ready for work, so its great. She falls back to sleep after that and will sleep till 10. She weighed 11lbs Friday. She has chubby cheeks :-)She is soo cute!!
Overall I think she is doing great!! We love her so much!!!

Pictures from my Phone!

I had two recent pictures on my phone that I figured I could upload. She is getting so big!!

I took a picture and she happend to be grinning. I havent been able to see this again :-)



Laying on mommy's bed!!(Only for a minute )

Wow I am really bad at updating my blog. I get on mostly everyday and look at others, but don't do much with mine! :-) I am back at work. This is my third week. I am enjoying being back, but miss Bryleigh. I found a lady to watch her that is near Tyler's new daycare. We really like her and are so thankful to have found her. Bryleigh is in the ECI program and when I told them where she was staying they got so excited. They said that she has a little boy that they currently visit, and have worked with her in the past and think she is great too. It helps so much knowing she is with someone who will take great care of her. Tyler didn't like his daycare at first. He said he "hated" one of his teacher. Not sure where he picked up that one, but he is 4 so there is no telling. But I have figured out that she is just a little more strict than what he is use to, but she is not mean to him. I was worried at first :-). But he is starting to like it alot more. I have a ton of new pictures, but all of them are on my computer at home. I will post some soon.
Bryleigh is still doing good. She has an MRI and a CT this Friday. They have to put her to sleep. I really don't like when she gets put to sleep, but the good thing is that I was able to get her CT and MRI on the same day. Took a little effort though. I also have made her an appt with an ophthamologist (can't spell). She is not really tracking objects. I thought she may be blind at first, but I really think she is looking at us now, she may just be delayed in that area. ECI is working with her on her tracking, they said last week she did reach out for a toy!! Woohoo!!So I have been trying this with her, but she doesnt seem interested when mommy does it. She is 2m3w now. She is not really smiling, which worries me a little, but given what all she ahs been through its probably not much to worry about. She has grinned at us a few time. So were getting there. She has kept me up all night one time. I was so tired at work the next day, but I did not complain to much because only one time is pretty good I think. Well I better get back to work!! I'll post some pictures soon!!