Happy New Years

I hope everyone had a great Christmas. Bryleigh celebrated her first Christmas and it was a white Christmas here in Dallas. Bryleigh got lots of presents but she was more interested in eating wrapping paper. She puts everything in her mouth. Her babysitter calls her a little billy goat. On Christmas she learned how to pull her self to a stand using the couch. She now does this on everything. She has had her share of wipe outs and hit her head a few times. She does not seem to be phased by them because she continues to pull up on everything.
She has been crawling really well lately. She is really fast. She takes off to the bathroom every chance she gets. She also shakes her head no back to us. It is so cute. She waves bye bye and tries to say it, but it souds more like di di. I am just so happy with how well she is doing. She is an absolute joy to watch as she learns all these new things.
We may be making another trip back to Duke for another cord blood infusion I had a date set but had to cancel due to our schedules. But hopefully I can get something set up soon. My best friend Stephanie lives in South Carolina and is going to drive down to stay with us. She went to my wedding and that is the last time I have seen her. So I am looking forward to the trip.
Bryleigh will be 1 next Tuesday. I can not believe it has been a whole year! Time goes by so fast. I am so blessed to have her in my life. I look forward to the years to come to be able to watch her grow and learn new things.
I don't get a chance to post much but I get on everyday and read everyones blogs. I say every time I am going to be better about updating. Maybe this time if I don't say it I will actually do better :-) Hope everyone has a Happy New Years!!!

She looks so excited about the present. I took these pictures in this order and her face is just so cute!





Mommy and Bryleigh!

I couldn't get her to sit still long enough to get a picture :-)

Checking out one of her new toys

She loves to stand up now


Family!

Holidays are Nearing!

Time goes by so fast. I can not believe Bryleigh will be 1 in 2 months. My son Tyler turns 5 in 2 weeks. So this time around our house is very busy! We have birthdays to plan, and holidays to prepare for. But with all the plans I absolutely love this time of year. I cannot wait to decorate for Christmas, I think that is when my house is the prettiest :-)
Bryleigh is continuing to do great. She is crawling around the house, getting into sitting position on her own, and talking alot. She is very fascinated with the dog food and laptop. She will be playing in the floor with her toys and as soon as someone sits down with the lap top she is right there trying to get some play time in on the keyboards. lol. She goes after dog food everytime she sees it, and I could not figure out the fascination. So i let her make her way to it the other day and she did not eat it, just wanted to feel it and throw them around. She definitely lets us know if she does not like something. She will give us her pouty lip or throw herself backwards.
About two weeks ago Michael was dropping Bryleigh off at the sitter and he pulled her arms to get her out of her car seat (something I said NOT to do ALL the time)and her elbow pulled out of place. She was in so much pain and it was so sad. I left work and met them at the hospital. They moved her arm around and did something that put it back. That day she was very fussy and would not use that arm at all. I started to worry because the doctors said she should be back to using it normally within a few hours. But by the next morning she was using it and pushing herself up with it. That was such a bad experience. So needless to say daddy does not pick her up that way anymore.
Bryleigh had an ophthalmology appointment about 3 weeks ago and they said her left eye does not focus as good as her right eye. We have started patching her eye for an hour a day each day. She does not like when i put it on her so she shakes her head side to side so I cannot get it on. Once I succeed she is fine with it. We have to do this for 4 months.
Next week she has an endocrinology appointment. I am not sure what exactly they are going to do, her doctors have just suggested she go to one. The following week she has an appointment at Scottish Rite. Her developmental doctor referred her to be seen. I have heard so many great things about the hospital.
Bryleigh is still in ECI and I think it is helping her so much. Her therapist sees another little boy at Bryleighs sitter too. Every time she comes to work with him she will do some stuff with Bryleigh even if she doesn't have an appointment.
Below are some recent pictures of Bryleigh from my phone. Sorry the quality may not be great, I have a ton on my camera that are probably more clear but I am at work so I can not get to them.

Tyler & Bryleigh at the Arboretum in Dallas



Bryleigh's Halloween pj's she wore to her sitters!



My little bumble bee!



Just one of the big smiles Bryleigh likes to give!!

Monday Update!!

Hello Everyone! Its been awhile since i have posted an update. Bryleigh is still doing great! Since I posted last we have met with her developmental doctor and she has had an MRI (today actually).
Well I will start with the developmental doctor. When we went Bryleigh was right at 8 months. They have her gross motor skills adjusted to about 6 months and her cognitive is at about 7 months. Her receptive and expressive language is at 8 months. The last time we went saw this doctor Bryleigh was 4 months. The doctor was only able to evaluate her gross motor skills and language. She was not able to get a good idea of her cognitive because at that time Bryleigh did not track objects or look at anything. This doctor like all her others was very concerned with her vision. When we were in her office this last time she ws very surprised that Bryleigh could see. She said she thought that Bryleigh was blind. She said she has only seen a handful of kids make such a drastic change in their visual capabilities. Overall we were very pleased with the appointment. We go back in January to see them.
Bryleigh had an MRI and an appointment with her neuro surgeon today. She did great for the MRI. She was sedated which always makes me nervous but she did awesome. We met with the neuro surgeon afterwards to go over the results. The arachnoid cyst that they have seen on her previous scans had not changed in size. So no surgery for Bryleigh. I was so worried about this. They did notice that she did have some extra folds in her brain in the occipital area. This is due to the encephalocele. She said this could cause vision problems and/or seizures. Bryleigh has not had an seizures so this has not seemed to have any effect. I still have some researching to do. I will take the radiologist report and dissect every word so that i know exactly what everything means. lol I am not sure why i do this, but oh well, i just like to know everyhitng i possible can. :-)
Bryleigh has started saying mama. At least i like to think she is doing it intentionally. She does say dada on a regular basis. She has also started trying to crawl. She get on her hands and knees and rocks back and forth. She also can sit on her own for a few minutes. When she gets tired she just falls over. She has not figured out how to get into a sitting position on her own, but we are working on it. She is always smiling and always laughs at her siblings. She smiles for everyone, but her brothers and sister are the only ones she really cracks up for. Tyler loves making her laugh for people. She has 4 teeth completely in and another about to come in. She grids them together sometimes and its the worst noise ever. But she likes it. haha.
We are so happy with the progress she is making. She is such a joy. I get SO excited when she does new things, well actually even if she has done it before I still get excited, lol.

A Year Ago Today

One year ago today I was 17w3d pregnant. It was a big day for us. We were going to find out if we were going to have a little girl or boy! I knew it was gonna be a girl :-). We also found out the news that the little baby i was carrying was not "normal".
I remember getting up that day going into work being so super excited. I even dressed nicer for that day:-) I went to work for a few hours barely getting anything done because I was watching the clock waiting for my appointment. My mom and sisters were going to meet Michael and I at El Fenix after the appointment so we could tell them what we having.
Michael picked me up at work and we drove on over to the doctors office. The doctor started the sonogram and immediately told us he sees some things that he does not like. He proceeded to tell us that our baby had spina bifida, a lemon shape head, and enlarged ventricles. "It does not look good" is what he said. I looked at Michael and he just had a blank expression on his face, then i started crying. I did not know anything about any of the things he just said. He said it could be genetic, etc. So he said he could do an amnio that day. After he explained a little about what the baby had i remembered to ask what we were having. lol. I completely forgot about my reason for being there:-). He said he was going to call my OB doctor and have us go talk to her.
We went over to talk to my OB and she had absolutely nothing good to say. She just kept telling us how bad it was going to be, that the baby was in really bad shape, had alot of issues, we should consider terminating, etc. But we immediately knew that we were going to keep the baby and give her the shot at life she deserves. I asked my doctor to send me to another sono doctor for a second opinion and she said there was no need, that he was the best. She then sent us over to the NICU to talk to one of the doctors so he could explain more to us. He was alot more assuring about everything.
The next morning I woke up and just cried. I was so upset. I had already done a ton of research on spina bifida, etc. We called and made our own appointment with a specialist and were set to be in the following week. Within a few days I was feeling much better about it all. We finally went and met with the sono doctor and he said she did not have spina bifida but did have a lemon shape head, enlarged ventricles, and an encephalocele. I was so excited about her not having the spina bifida that I did not ask much about the rest. When I got home i researched some more. I scared my self to death looking up encephaloceles. They literally only put the worst case scenarios on the Internet. From there we just went about the pregnancy knowing my little girl was going to have some struggles in life, but we were willing to do whatever we could for our sweet little baby.
Today Bryleigh is 7mo3w old. She is absolutely perfect to us. She is doing so much better than i had prepared myself for. God gave me this little girl and gave me the strength to care for her and give her what she needs. I would not change our experience for the world. I thank God everyday that I did not listen to my fisrt OB doctor (I switched). I could not imagine our lives right now without Bryleigh. In a way I feel privileged that God chose me to care for a child with "special needs". Its hard to explain what I mean by that but I am sure some of the other mommies may know what I mean. Bryleigh is so special to our family! Every little things she does absolutely amazes me. Her being able to do things that others said she would never do makes it that much more special. God has been so great to us!

Yep, Im just paranoid :-)

So yes I was more than likely just being paranoid. We are just going to take the "conservative" approach for now and try to monitor the spells more closely. So again, we will not have to go back to him unless a need arises in the future. He is such a great doctor though. But there is no need to have so many if we don't need to. The first week in September we go see the developmental doctor. Hopefully that are as pleased with her as we are :-) She is such an easy going baby. Everywhere i take her people comment on how good and happy she is. She can sit up on her own unassisted on the bed for a few seconds at a time. When she starts trying to look around a lot she falls over.
Bryleighs hair is curly I think. She doesn't have a bunch yet, but the stuff she has on top curls. It so cute. It also swoops up over her shunt. Its not quite long or heavy enough to lay down over it. I put bows on her occasionally and she pulls them off and puts them in her mouth.
It's night night time!

Play Time!

I got some really cute pictures of Bryleigh playing in her exersaucer (spelling). She loves being in that thing. It really helps her with head control, etc. There is this lizard that light up and sings when you hit it. She has got that figured out which i thought was pretty impressive :-). She sometimes gets so intrigued with it and stares at it like her gaze is gonna make it do something. lol i dunno. The first picture is a picture of her staring at it.

Tomorrow we go see the neurologist. Hopefully he thinks that it is nothing and I am just being a paranoid mommy!

Rolly Polly

Bryleigh Loves to roll around! She rolls from one end of the living room to the other!! She is also sitting up for a few seconds on her own! Her therapist called me yesterday to let me know how well she is doing. They are all very impressed with her progresses. Im so proud of her. She is such a happy little girl. She sometimes laughs so hard. Her brother made a tooting noise and she cracked up. So sometimes to get her to laugh we do that. Lol its a little weird but she likes it. :-)

On another note. She has been having weird like staring spells. After it she gets very upset and screams. It is so sad. Im not sure if it is even anything or maybe just gas? I made her an appointment with the neurologist. We actually were told we did not have to have routine check-ups with him anymore. Last time we went he said she did not have any issues that he needed to see her for. But the staring spells is something her neuro-surgeon wants her to see the neurologist for. So we go see him Tuesday.

I got a video tonight of her rolling around some! I got her towards the end so she is a little tired :-)
(not sure if it will upload though)