What a Day

The appointment with the developmental doctor went good. She said that Bryleigh is about 2 almost 3 months in her gross motor skills and as far as cognitive its hard t tell because Bryleigh's vision impairment. She also felt that Bryleigh does not see well. But every doctor has told me that so nothing new! She said that her expressive language is good. She would coo and Bryleigh would coo back. Also, she does very good at trying to hold her head up. So we will just keep working with her!
The doctor did her head measurement and got a measurement of 46.7. That is up 2 centimeters from Wednesday. I know technique plays a little role in measurements. I took her to her pediatrician to get measured and they got her at 45.8. Which is still up from her appointment two weeks ago. I also measured and got a higher number than I normally do. So I am going to take her to the hospital to get looked at. She has been spitting up alot, but she is not lethargic or anything, so that great. I just want to get her looked at as soon as possible. Her doctor said I could just wait for an appointment with the neuro surgeon, but I think it may be best to have her looked at just in case. I will keep yall posted!!Please keep us in your prayers!!

I also have been up since 4a.m. My older sister got in a wreck, and then my little sister got in one around 8a.m. They are both okay though!!But its been a looong day!!

Finally an Update!!!! Good News!

I am finally getttng a chance to update :-). I have been so busy lately. This site is blocked on my computer at work so I cant update then, then by the time I get home I don't even get on the computer because I have so much to do!! Too busy!! Anyways...We met with the neurologist and he said that he thinks Bryleigh may have what is called a lobar holoprosncephaly. When the brain is developing it is suppose to divide into two hemishperes. With a lobar holoprosencephaly it means that the brain did not divide completely. The doctor went ahead and scheduled an MRI so we could confirm/exclude this. Well we had the MRI done last week, and she does not have it! That is great news because it is just one less thing we have to deal with. He said the MRI she had the day she was born was a little hard to read because the brain was so distorted (she had not been shunted then). Now that she has her shunt things are a little more clear. He said that her ventricles are much smaller, that she does have her corpus calossum but it is thinned. She also does not have a Chiari malformation. Pretty much what he said is that she has congenital hydrocephalus, absent septum pellucidum, and an encephalocele that had been repaired. So nothing new!!
Bryleigh has been doing great. I started spoon feeding her cereal and she has done great! We tried some carrots yesterday, and she liked them. I also switched her bottles from Avent to Dr. Brown. She spits up alot now so I thought maybe the Dr. Browns would help. They have definitely helped with her gas, but not so much with the spitting up. She weighs 14lbs now. She had her 4 month check up and she got her shots. She only cried when they held her leg, she was fine right after. That is really amazing to me because Tyler would cry so hard I would think he was gonna pass out! She has been through so much already it just doesn't faze her :-). She has been really making noises too. She loves the sound of her voice. She also will smile for us, but mostly smiles when she is staring at the ceiling or something while she is making noises. When we went to the ophthalmologist he said that there was no damage to her eyes, so i assumed that she could defiantly see. Well the neurologist said that it is great that everything looks good with her eyes, but whether or not what she is seeing registers with her brain is what we have to wait and see. She still does not track objects. Every once in awhile I think she sees me, but she mainly just likes looking at lights. So we just have to wait and see. We have an appointment with the developmental doctor tomorrow. We hav not seen her since Bryleigh was in the NICU.
Bryleigh also had an MRI of her spine the day they did her brain and everything looked good with that.
Her therapy with ECI is going good. She has three therapist that go to see her. Her legs are a little tight while her arms are loose. But we will just keep working on that!
She is just so cute! She loves sleeping in my bed, but I try to avoid that, but she just seems to sleep so well, not me though. Lol. I will let everyone know how the developmental doctor goes. Its a bit rude of me to leave everyone hanging with what my last post was about. Wont do it again!! Promise! I still read every ones blogs everyday from my phone!!I will be better!!

Smiling for Mommy!!



She sucks her thumb!



She doesnt care to much for her Bumbo!

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!!!

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!!