Monday, May 4, 2009

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!


Kristen said...

We started Cayman on Dr. Brown bottles when she was only a couple months old too. We found the same thing, that it helped her gas but not the spitting up. We discovered she was having some reflux and if we kept her upright for a little while after eating she didn't spit up much at all. If she was laid down flat too soon after eating is when she spit up.

She looks so great in her pictures! I can't believe how big she's getting! And 14 pounds now...good job mommy!

Sweetest Girl in the World said...

I'm so happy to hear there isn't any new/unexpected news... if that even makes sense! She is so beautiful Stephanie!!!
Audrey's gag reflex is very sensitive, so she pretty much vomited every time she would yawned or coughed and she had reflux baaad! So, we started Simply Thick in February and it has kept everything down! She spits up every once in a while, but it's not nearly as bad as what it was.
I think we will live our lives waiting and seeing... but it should get much easier as she gets older and you're seeing the doctors less and less.

Zoe said...

Yeah!!! What great news! She is such a cutie!!! :D Lily dosen't like her Bumbo much either. I put her in everyday to feed her cereal and towards the end she is trying to thrust herself out and back. Bryleigh looks wonderful!!! So glad that you updated I have been eager to know. Take care...

Josephine said...

I'm so glad she's doing so well, and that you don't have that extra issue to deal with! She is such a pretty little thing :)

Shannon said...

Yay! No Holoprosencephaly! See, you befriended me for nothing! Congrats! She's such a cutie!

Felicia Garrett, wife to Chris, mom to Briley said...

I know you don't me, but while searching for info on other babies with the rare brain anomolies as my son, I landed on your blog. My son is 19 months old and his name is Briley, and he has absence of the septum pellucidum, thinning of the corpus collosum (amongst other neurological issues) and we live in Texas too. Briley is a pretty rare name, someone else with the same name in the same state is pretty rare too but add that to the completely rare brain anomolies just floored me! Wow! Bless you, your little one and your family. The love always outweighs the heartbreak! ;)