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!!

Back Home

We got home last night! Our trip went great. Bryleigh was so good on the plane! She was awake more for last nights fligt, but she was content looking around.

Plane ride home~


She did so good during her infusion on Tuesday. She did not even cry when they started her IV. She tensed up, and I thought she was gonna cry but Dr. Kurtzberg did a great job and got it on the first try!! She slept through the infusion (which was only about 10 minutes. The doctors said she would smell like cream corn from the infusion. And she did, all night! It stunk. lol. They said that when they do the infusions the patients always get that smell.

~All the stuff to prepare for the infusion (her cord blood)~



~Awake after the IV was put in



~Sleeping after the infusion. She is getting IV fluids~



~Sleepy baby :-)



Wednesday we went and met with the neurologist. I have not yet met with a neurologist since Bryleigh was born because I did not think we needed one, but after meeting with him I think it would be a good idea to get one. Her neuro surgeon is great, but the neurologist goes over more issues. Her left eye appears to be maybe a lazy eye, but it could be something she will grow out of, it is not for sure though so we will meet with an optomologist and see. There are a couple others things that we will be going over with her peditrician just to make sure that they are okay. Overall I feel we got alot out of our trip. Everyone was very helpful, we arejust so grateful for the opportunity!!

We have Arrived!

We are in North Carolina now. We left Dallas this morning around 7:30 a.m. The flight was actually only two hours. Bryleigh did great! She woke up to eat and went back to sleep. Since the plane was not full I was able to get a seat to put her car seat in, so I did not have to hold her the whole time. The weather is not much different from Texas. Tonight they have a chance for snow!

In the morning we need to be at the Duke Childrens Center at 9 for her to be measured, weighed, have blood work done, and a physical. Tuesday she will have the actual infusion! We are so thankful to have been able to do this!

I have not measured her head since the appointment with the neuro surgeon but to me it looks like her head has gotten a bit smaller. I can see the bones in her head more now, which to me would indicate that it has gotten smaller! I have been very diligent about keeping her upright (all the time) and I think its paying off! She still sleeps alot, kinda worries me sometimes, but then again it may be completely normal, i just was not use to it with Tyler (who never slept lol).

Well off to get some dinner! I will update on how things go tomorrow!!

Neuro-Surgeon Update

Bryleigh had her first follow up appointment with the neuro-surgeonon Monday. We have not seen her since we left the hospital. So I was very anxious to see what her head size was. Well it was 44. This was the size it was when she was born. The doctor said she thinks her head is still to big. It had actually gone up 3 centimeters since we left the hospital. She did say that her shunt was still working, which is good. But apparently the fluid is not draining enough to make her size go down. I have been keeping her at an incline most the day and all night. Although sometimes when Michael left for work, I would lay her in the bed with me, and sometimes let her nap on my bed, so she was not inclined very much at all. The doctor said that we need to always be sure to keep her at in incline. So no more sleeping in mommy's bed I guess. I wonder if it will always have to be this way for it to work to its fullest? Doctor has us coming back in 1 month for a CT scan and a follow up with her. She said that if her head size gets any bigger from now until then, or does not go down any, that we will have to start pumping her shunt. She did it while we were in the office, it looked painful to me, but Bryleigh didn't seem to mind it at all and the doctor said it does not hurt her. When she pumped it I could see her soft spot sink in, that's how she knows the shunt works. If the pumping doesn't work we may have to consider a second shunt. Her incision sites look great and we also got the okay to lay her on the back of her head and on the right side (we were only able to lay her on her left because of the shunt on the right and the incision on the back of her head)



We also had an appointment with the occupational therapist last Thursday. We went to see them because Byleigh spits alot of her milk out while eating. We had been adding simply thick to her formula to increase the consistency. It helped, but took her foreveeerrr to get through 4 ounces, like an hour!! That's to long, and exhausted her. I tried using a faster flow nipple and it was way to fast for her, and she spit half of her bottle out. So the therapist had us go down to the slowest nipple with no simply thick. This has been the best option so far. While we were the I told the therapist that I noticed that Bryleigh always looked to the left, and held her head to left only. This is because this was the side she had been laying on since she was born. So we are doing stretches with her so that her muscles don't get to tight, and to encourage her to start looking to the right, and turning to the right. She seems to be doing good with this so far!! :-)

We leave Sunday to go to Duke for Bryleigh's cord blood therapy! She will actually have the infusion on Tuesday, but we need to be there by Monday morning. We didn't quite make it within the month of her birth, but its pretty close. My granny had free airline miles so thats what we are using to get there. That helped out so much!! I'm a little nervous about taking her on the plane, especially since its flu and RSV season. But I will keep her covered as much as possible. It is a three hour flight I think, so that's not to bad.