Saturday, September 30, 2006
Friday, September 29, 2006
Love you all tons!!
Oh, and Avery Elizabeth Poage should be making an appearance any minute now and I promise to post pictures as soon as I get one!!
Wednesday, September 27, 2006
October 3rd: Andrea Breast Sonogram @ 10am
October 5th: Neurologist @ 8:45am
October 6th: Kidney Test @ 7:45am
October 19th: Neurosurgeon (Cook Childrens) @ 10:30am
October 25th: Hearing Test @ 10am & Neurosurgeon (Medical City)@ 3pm
Also, we have kept our physical therapy date/time for Tuesday's at 9am.
Monday, September 25, 2006
We went to the pediatrician this morning. If you remember a few weeks ago Ella had a UTI (urinary track infection). Since this isn't "normal" in little girls at this age they were concerned about her kidneys. She also had a kidney test in the NICU that came back abnormal. So.......we now have to have a more extensive kidney test. They are going to do a sonogram of her kidneys to make sure everything is formed correctly, then they are going to inject dye in her bladder to see how everything flushes. They want to make sure her "flow" isn't going back up into the kidneys and everything flushes correctly. We'll keep you posted when we get a date for this test. Oh, and she weighted 14 lbs 9 oz...and growing daily!!
We got the call back from the neurologist at about 11:30am today. Here is what was said: The good news is that there was no tumor (I didn't know we were looking for one). There isn't anything causing pressure on her brain any longer either. However, they did find something called a venous angioma (def: A venous angioma Â also called venous malformation Â of the brain is a small tangle of abnormal veins. Venous angiomas are the most common brain vascular malformation, occurring in approximately 2 percent to 3 percent of people. In most cases, venous angiomas cause no signs or symptoms. They are often found incidentally on brain imaging studies, such as computerized tomography (CT) or magnetic resonance imaging (MRI), done for some other reason. Unlike many other vascular malformations, venous angiomas rarely bleed. Treatment such as surgical removal of the venous angioma usually isn't recommended because the lesions typically cause no problems and treatment may lead to complications such as stroke. Occasionally, venous malformations can be associated with other types of vascular malformations that may require treatment.) The brain bruises that she had before have evolved and gotten lesnoticeablele...the word he used was "absorbed" and made it sound like the bruising was also bleeding on the brain. According to the neurologist there isn't anything for us to do now, however they may want to rescan in the future. He did want us to make an appointment with the neurosurgeon, but honestly I'm not sure exactly why. I guess we'll find out more in the coming weeks. For now, I think it looks good. If you know anyone who (or if you can) explain this any further, please feel free to write in the comments so we can all feel a little more knowledgeable.
We are stilstrugglingng with holding our head up...okay, Ella struggles, but it feels like my head (and heart) get heavier every time she tries and doesn't succeed. We have physical therapy tomorrow and I'm hoping that she since improvements. Last week she asked us to paint Ella's toe nails dark so that she would begin to notice her feet and start to play with them...right now it just looks like I wanted to do it, with no reaction from Ella.....yet. I'll post pictures of her cute feet. So, we can't really progress with anything until she can gain some control of her head. She is doing much better keeping it in the middle, but as soon as she gets tired it goes straight for the right side. Her eye is still very obviously lazy, but it doesn't even matter right now...she's so dang cute!!
Thank you for the prayers, keep them up...our prayer warriors are amazing.
Friday, September 22, 2006
Keep the doctors in your prayers as they make their decisions.
Thursday, September 21, 2006
Yep, tomorrow (Friday) is the MRI. We check in at 6:15am and the MRI will be at 7:30am. Please pray for a couple of things:
- That Ella does well during the procedure and it doesn't freak her out.
- As of now she will only be on mild sedation, my prayer is that it won't be any more than that and that they don't have to vent her like the last time.
- The Doctors will be well skilled in what they need to look for and that they will be able to tell us a diagnosis without question.
- That the bruises on her brain from the infection/meningitis/seizures will be MUCH better.
- The enlarged blood vessel in the middle of her brain will be a non-issue and they won't even suggest brain surgery again.
- And finally, pray for patience and understanding from both Joe and myself. Joe's faith doesn't waiver, but mine is tested daily as I have to watch Ella struggle through things that are so normal for other children her age and all of the medical complications that she has to deal with. My poor daughter is so tired of being poked and prodded...I can't wait till the week where we don't see even one doctor, specialist, or therapist. I feel like I'm on an emotional roller coaster. Whoever thought it ended after the pregnancy hormones were gone is crazy...it was only the beginning of feeling like I don't have control of anything. Luckily we have a God who IS in control...and whatever happens, it's in His hands...and I'm perfectly okay with that.
Monday, September 18, 2006
To update on the hearing test from today: Ella got through 1/2 of her hearing test perfectly...passing everything, however, she needed to stay alseep for the 2nd half and decided she wanted to wake up and show the ladies conducting the test how happy and smiley she can be...so we have rescheduled the rest of her test for October 6th. It's a great facility on the UTD campus and I really loved the center. So, we know she will probably pass her complete test, but we won't know 100% till October 6th. Also, they will recheck her hearing every 6 months till she's 3 years old and then she gets turned over to the public school system...but we should know a lot more by then!! You should have seen her today (I almost tooka picture) she had cords taped to her head to see what her brain reaction was to her hearing...it's amazing what they can do...wasn't sure how she was going to raise her hand and tell them which ear she could hear the "beep" in...I'm sure you all remember taking those hearing tests in school. Technology amazes me.
Sunday, September 17, 2006
On Tuesday we have PT again. We are still doing Tuesday mornings at 9am till October when we might be moving to Wednesday mornings at 7:30am...Depending on if the family whose spot we are taking decide to leave. Otherwise we may need to find a different child physical therapist. Also, Ella is getting MUCH better at head control since Joe has worked with her so much on it.
Friday we have our MRIs. For some reason they made me schedule 2 appointments that day. Ella will be sedated bc we are supposed to receive a phone call from the anesthesiologist the night before. There are two things they are looking for. One is to see if there has been any change in the bruises on the brain...The second is to see if there is still a concern for the enlarged blood vessel in the very center of her brain. Please pray that as they look at the film that both of these issues have been resolved and God has healed her brain.
We would love to hear from you if you are praying for our little girl. It's amazing how many people we have met that we didn't even know were praying for us...It really does help on the tough weeks to know there is God's army standing in the gap for us in prayer.
We love you all,
Friday, September 15, 2006
14 lbs 1 oz = 65th Percentile
24 7/8" long = 75th Percentile
15 1/2" head = 15th Percentile (VERY GOOD...we are in the double digits here)
The doc was encouraged that she is growing in all areas equally. Her feeding needs are obvious since she's growing in length and weight...and my back feels BOTH. The biggest concern, it seems for everyone, is her head control. She struggles to be able to move her head around or to hold it up at all. We are working with her every day...all day long, but it's a VERY slow process. Starting her on rice cereal was discussed, but for now we are going to hold off bc Joe and I both had childhood allergies and they advised against starting her on food right now. Ella received her 4 month immunizations yesterday and didn't cry at all...even hours later she was laughing and "talking" to us, but no crying. She has started getting very upset when on her tummy and at night when she's put down to bed, so we know she CAN cry, she just chooses to pick when she shows us this emotion. I was all prepared to freak out when she started getting upset after the shots, but she just looked irritated and didn't make a peep...the bottle waiting for her probably helped :)
We have a fun weekend planned with friends. It's Joe's 30th birthday on Sunday so I'm sure we will have lots of pictures to share. Also, our good friends Stuart and his new fiance Sarah will be in town so we are excited to introduce Ella to them. We have some birthday presents that we are excited to give "daddy" so we'll report back to you all next week.
Monday, September 11, 2006
I thought I'd update and send pictures for fun. Ella is getting more and more animated every day. Last night Joe was sitting over here saying "OOOOOO" and you could tell that she was trying to put her lips in the same form...for a second she got so frustrated that she started to wimper, but then she figured it out and you could see how excited she was. Now they have this "ooo-language" it's so cute to watch them together. I honestly think her face lights up whenever he's in the room. We talked last night (her 4 month mark) about how close we were to losing her those first couple of days and are in awe at what God has revealed through a child. We discussed all the fears that we had been so scared to even mention for so long. God really has blessed us throught this beautiful little girl, and she teaches us God's love for us daily. It's amazing to know that the way we look at her and love her is only a fraction of what God feels for us. His desire for us to look at Him and mimick what he says...even if it's as small as the sound "ooo". The way that our heart fills up when she acknowledges us and smiles at us...it's got to be amazing on a God-level.
(Picture of Micah and Ella at lunch after church). Also this weekend my nephew, Micah, was dedicated at my childhood church, The Height Baptist (where Joe and I were married). I loved getting to go back. Eventhought the building have changed, the faces are so much the same. I told Joe, "it's like going home". The pastor, Gary Singleton, did such an amazing sermon. It was wonderful to see Sara and Mike dedicate Micah and promise to raise him in God's house and under God's rule and guidence. Ella also finally got to meet Mrs. Jan Margrave. Jan has been a regular on this blog, and has prayed faithfully for Ella. If you look on the links list to Margrave/Byrd, you'll see her grandson Liam, who is a looker!!
All in all it was a great weekend of family and friends. It's always so nice to be able to stand back and look at your life...know that you are loved and prayed for...it's God's people at work.
Thank you again to all of you who come to this website to check on our precious child...we will never be able to thank you all enough for all that you have done.
Monday, September 04, 2006
Well, since August 24th I think we've been to a couple of doctors. We have gone to developmental, had another physical therapy session, and seen Dr. Owens (the neurologist).
The Developmental appointment went well. We are still in that stage where we don't know what the long term effects of the brain injury will be for Ella. She is consistantly in the 5th Percentile of Development for her age (3.5 months at the time of the appointment). Ella still has very little head control, doesn't keep her eyes centered, and holds her head to the right side most of the time. They want to monitor her again in December to see if she has started hitting her where she should be on the developmental charts. So much of this delay is because she was HEAVILY sedated for the entire month in the NICU. Once the cloud of meds cleared from her head she could finally start to develop, so in turn she's a little more than a month behind everyone else her age.
Physical Therapy is going well. We are through a system called ECI (Early Childhood Intervention) and love our PT. She works will Ella doing a massage to start the session, then some stretches, and then we work on tummy time (which Ella has been hating lately) and some positioning. We are trying to keep Ella's head "mid-line" 100% of the time, but need some engineers to help with some ideas. How do you keep a baby from turning her head to the right without hurting her or suffocating her...it's tricky. Mostly we just play with her while she's awake on all of her head stuff and ask others to be aware of it when they are playing with her. We have PT every week and will start having it every Wednesday at 7:30 am...for anyone who knows me this is HUGE...I'm NOT a morning person...especially when I don't have anywhere to be that day. I sure love this little girl. (this picture is after some "tummy time"...which wears her out)
Neurology went pretty much the same. We talked about a lot of Ella's "issues" and what is normal and what isn't. I'll give you a list of developmental items that Ella should be able to do at this age: Notices faces, Smiles Responsively, Smiles Spontaneously (she passed all of these); Follows to midline (can sometimes), Grasps Rattle (can't do this); Equal Movements (passed), Follows past midline (can't do this very well), Hands together (sometimes, not consistant), Vocalizes-not crying (passed), laughs (not really yet), squeals (nope), she failed ALL of her gross motor skills including: lifts head at midline while on tummy, head up to 45 degrees, and 90 degrees; doesn't use arms to lift up chest, hold head steady, and rolls over. We have a LOT to work on. There are so many fun things coming up on the developmental chart that I'm excited to see how much she grows this next month. We have an MRI probably in the next few weeks (we'll find out at the end of this month) to see the update on the brain bruises (from the seizures and infection) as well as double check the enlarged blood vessel that she has in her brain. They are conserned that it is something they would need to operate on...and I can't fathom the words "brain surgery" so PLEASE pray that the blood vessel is gone or a non-issue. (this picture is from the waiting room...daddy and E were very excited about the appointment)
Here are some fun pictures:
Hanging out at the Byers' with the Brannon's (wearing the dress from Mexico our friends brought back from Kent and Sarah's wedding):
Mommy's friend, Wendi, came all the way from Florida to meet Ella...here's a picture of the girls.