Have you ever seen anything more beautiful? It should be on display at the Louvre!Monday, August 31, 2009
Tuesday, August 25, 2009
Sunday, August 23, 2009
Go Braves!
One of the nice perks of Justin's job is the company's season tickets to the Braves. We were able to get the tickets for the game today and it was a PERFECT day for baseball. The humidity was low, the temperature was in the low 80's, there was a nice breeze...and best of all...our seats are in the shade. Lily enjoyed the first three innings, took a nap for the next three and woke up in time for the seventh inning stretch. We didn't want to get caught up in the exit (especially since LA was due for "first dinner") so we left in the seventh inning. Did you know that when you leave that early, the onramps to the interstate that are near the stadium are still open? Not like when you leave after the game and they route you through the "lovely" parts of downtown. She did great at her first game and we all had a fun time! Best of all...the Braves won!
This is why we LOVE the club level...air conditioning and comfy seats in the concessions area!
Entering the stadium
The game is fun!
This is what happens when we self-portraits go bad!
This is why we LOVE the club level...air conditioning and comfy seats in the concessions area!Someone is worn out from all the fun
Saturday, August 22, 2009
Friday, August 21, 2009
The post...
Most of you know that we learned that Lily Anne has a "condition" early on. What exactly it is, we learned the night she went to NICU. Up until now, we (mostly I) have kept the details to ourselves as we weren't quite sure of all the information ourselves. It is becoming harder and harder to talk around it, so I have decided it is time to share with you, our family and friends.
Lily Anne has a couple of different issues going on.
First, you already know she has a small VSD (hole in the heart). As of now, the cardiologist is hopeful that it will close on its own. Lily will have periodic echocardiograms to monitor the VSD. All signs indicate that it is going to close on its own over time.
Secondly, she has a chromosomal issue. She has an unbalanced translocation of a couple of chromosomes. In "non doctor talk" this basically means that part of one chromosome and part of another chromosome have swapped places. Not a big deal if it is balanced, but LA's is not balanced. She has a little bit of additional material from one chromosome and a little bit of a deletion from another chromosome, thus making it an unbalanced translocation. What this means is largely unknown since it is not a "typical" chromosomal issue such as common ones like trisomy 21 (three of the 21st chromosomes resulting in Downs Syndrome). When we were at Emory Genetics, they explained to us that only recently has the genetic world had detailed enough tests to find these smaller anomalies so they do not have much information about it. Lily Anne will be seen by the geneticists yearly for a while and they will document her development and put it in the computer system for geneticists and if another child is born with the exact chromosome map as LA, they will be able to better predict his/her development. Long explanation, but I hope it makes some sense.
Finally, the BIG issue. Lily Anne has what is called Agenesis of the Corpus Callosum. The Corpus Callosum is the main connection between the left and right halves of the brain. Lily Anne does not have a corpus callosum. The halves of her brain are still connected by other pathways, but she is missing the main bundle. What does this mean for her? Good question. We don't know. The best way I can explain it, people with complete Agenesis of the Corpus Callosum (from now on referred to as c-acc) can be affected differently. If you are familiar with Autism, you know there is a wide spectrum. Some people are autistic, but you wouldn't know...you might just think some things about them are a little quirky. Some autistic people are very severe and don't talk and have many stimming behaviors. While c-acc is not like autism, it is similar in that its effects on individuals is like a spectrum (going from minimal impact, to very severe).
Please don't google it.
Trust me.
There is a lot of information and most of it focuses on the extremely bad cases as well as cases where the individuals had several issues going on at once. So far, Lily Anne is doing everything a typical baby should, so we are very happy. In fact, our pediatrician has told us a few times that if he didn't know she had c-acc, he wouldn't suspect she had anything different about her. She does have a few major milestones coming up that I get nervous about. Walking, for example, is sometimes delayed in children with acc. Delayed speech is also sometimes associated with acc. See, the key word here is SOMETIMES. So, we don't know if it will be with LA or not and there is no way to tell. Later in life, she may have some learning issues (again, these can be mild or severe...we just don't know).
Right now, she sees a physical therapist twice a month for hypertonia (some of her muscles are tight). However, it is not severe and her therapist also pointed out things she is doing "ahead of time." Obviously we are being super-cautious and any signs of delay are being addressed ASAP in the hopes of preventing them from becoming major issues.
There are a couple of other little things, but they are very minor and minimally impactful. Her little toes cross over and we might have to address that if it becomes an issue with shoes. She likes to pull my hair, so I might need a wig. She likes to pull Justin's lips so he might need reconstructive surgery. She likes to try to pet(hit) Baxter so he might need therapy. But, again, those are minimal.
So, there it is.
I still don't really want to talk about it, so I thank you for not making it a topic of conversation. It is ok to ask how my sweet baby is doing, but don't expect a medical dissertation :) Also, please don't pity or look at Lily Anne differently now that you know what her situation is. We have high hopes and high expectations for her and we hope you will too. There is no reason to think it is not possible. Please continue to pray for her, that she continues to grow up healthy and happy.
Lily Anne has a couple of different issues going on.
First, you already know she has a small VSD (hole in the heart). As of now, the cardiologist is hopeful that it will close on its own. Lily will have periodic echocardiograms to monitor the VSD. All signs indicate that it is going to close on its own over time.
Secondly, she has a chromosomal issue. She has an unbalanced translocation of a couple of chromosomes. In "non doctor talk" this basically means that part of one chromosome and part of another chromosome have swapped places. Not a big deal if it is balanced, but LA's is not balanced. She has a little bit of additional material from one chromosome and a little bit of a deletion from another chromosome, thus making it an unbalanced translocation. What this means is largely unknown since it is not a "typical" chromosomal issue such as common ones like trisomy 21 (three of the 21st chromosomes resulting in Downs Syndrome). When we were at Emory Genetics, they explained to us that only recently has the genetic world had detailed enough tests to find these smaller anomalies so they do not have much information about it. Lily Anne will be seen by the geneticists yearly for a while and they will document her development and put it in the computer system for geneticists and if another child is born with the exact chromosome map as LA, they will be able to better predict his/her development. Long explanation, but I hope it makes some sense.
Finally, the BIG issue. Lily Anne has what is called Agenesis of the Corpus Callosum. The Corpus Callosum is the main connection between the left and right halves of the brain. Lily Anne does not have a corpus callosum. The halves of her brain are still connected by other pathways, but she is missing the main bundle. What does this mean for her? Good question. We don't know. The best way I can explain it, people with complete Agenesis of the Corpus Callosum (from now on referred to as c-acc) can be affected differently. If you are familiar with Autism, you know there is a wide spectrum. Some people are autistic, but you wouldn't know...you might just think some things about them are a little quirky. Some autistic people are very severe and don't talk and have many stimming behaviors. While c-acc is not like autism, it is similar in that its effects on individuals is like a spectrum (going from minimal impact, to very severe).
Please don't google it.
Trust me.
There is a lot of information and most of it focuses on the extremely bad cases as well as cases where the individuals had several issues going on at once. So far, Lily Anne is doing everything a typical baby should, so we are very happy. In fact, our pediatrician has told us a few times that if he didn't know she had c-acc, he wouldn't suspect she had anything different about her. She does have a few major milestones coming up that I get nervous about. Walking, for example, is sometimes delayed in children with acc. Delayed speech is also sometimes associated with acc. See, the key word here is SOMETIMES. So, we don't know if it will be with LA or not and there is no way to tell. Later in life, she may have some learning issues (again, these can be mild or severe...we just don't know).
Right now, she sees a physical therapist twice a month for hypertonia (some of her muscles are tight). However, it is not severe and her therapist also pointed out things she is doing "ahead of time." Obviously we are being super-cautious and any signs of delay are being addressed ASAP in the hopes of preventing them from becoming major issues.
There are a couple of other little things, but they are very minor and minimally impactful. Her little toes cross over and we might have to address that if it becomes an issue with shoes. She likes to pull my hair, so I might need a wig. She likes to pull Justin's lips so he might need reconstructive surgery. She likes to try to pet(hit) Baxter so he might need therapy. But, again, those are minimal.
So, there it is.
I still don't really want to talk about it, so I thank you for not making it a topic of conversation. It is ok to ask how my sweet baby is doing, but don't expect a medical dissertation :) Also, please don't pity or look at Lily Anne differently now that you know what her situation is. We have high hopes and high expectations for her and we hope you will too. There is no reason to think it is not possible. Please continue to pray for her, that she continues to grow up healthy and happy.
Thursday, August 20, 2009
6 Month Checkup
Still no "official" six month pictures...we will work on that this weekend, but Lily Anne did have her six month checkup this week. First, the stats:
Weight: 12 lbs 13.3 oz (around the 5th percentile)
Length: 27 inches (90th percentile)
Still long and skinny!
She is getting over her cold, that she kindly shared with her Daddy this weekend. Her congestion is almost gone and she is feeling much better. She is doing better about napping at daycare as well, so it looks like our little bean is getting used to the new routine.
Ok, I know it was a quick update. I'll try to post more this weekend. Thanks for all the concern about LA's cold :)
Weight: 12 lbs 13.3 oz (around the 5th percentile)
Length: 27 inches (90th percentile)
Still long and skinny!
She is getting over her cold, that she kindly shared with her Daddy this weekend. Her congestion is almost gone and she is feeling much better. She is doing better about napping at daycare as well, so it looks like our little bean is getting used to the new routine.
Ok, I know it was a quick update. I'll try to post more this weekend. Thanks for all the concern about LA's cold :)
Saturday, August 15, 2009
6 Months Old
Lily Anne is six months old today and we are celebrating by trying to get her over her nasty cold.
Yep, LA got her first cold this week and it is pitiful. Sick babies are so pathetic and, since there is not much you can actually give them as far as meds, it is a wait it out game. We took her to the pediatrician since she was running a fever on Thursday and they confirmed that it is a classic cold and to use the saline spray, humidifier, etc. She is feeling better today although she still sounds like Darth Vader with all her congestion.
That being said, I have not taken pictures of my little 6 month old because her nose is a hot little mess. Hopefully she will be cleared up by the end of the week and I can post some pictures.
In other news, you won't see as many updates now that I am back at work. I am exhausted by the end of the day and blogging is the last thing on the daily "to-do list." It will get better after the Kindergartners get used to being in school and aren't as demanding...but in the meantime...I need a nap! It's hard getting used to getting three of us out the door by 6:45, and I don't think we will ever like it. It is sooo early! Really, whose idea was it to start school so early in the morning?
That's all for today. Off to use the oh-so-fun bulb syringe on a little someone...can I tell you how much she LOVES it?
Yep, LA got her first cold this week and it is pitiful. Sick babies are so pathetic and, since there is not much you can actually give them as far as meds, it is a wait it out game. We took her to the pediatrician since she was running a fever on Thursday and they confirmed that it is a classic cold and to use the saline spray, humidifier, etc. She is feeling better today although she still sounds like Darth Vader with all her congestion.
That being said, I have not taken pictures of my little 6 month old because her nose is a hot little mess. Hopefully she will be cleared up by the end of the week and I can post some pictures.
In other news, you won't see as many updates now that I am back at work. I am exhausted by the end of the day and blogging is the last thing on the daily "to-do list." It will get better after the Kindergartners get used to being in school and aren't as demanding...but in the meantime...I need a nap! It's hard getting used to getting three of us out the door by 6:45, and I don't think we will ever like it. It is sooo early! Really, whose idea was it to start school so early in the morning?
That's all for today. Off to use the oh-so-fun bulb syringe on a little someone...can I tell you how much she LOVES it?
Wednesday, August 5, 2009
The Daycare Report
Apparently, some of you have been anxiously awaiting a report as to how Lily Anne is doing in daycare. She seems to enjoy it...she doesn't cry when we, make that Justin, drops her off in the morning. We can peek on her throughout the day through the online video cams and she never appears to be crying or unhappy.
In fact, she seems to want to be a part of the action so much so that she will not take a decent nap at daycare. Yep, you heard me right. Our awesome little sleeper is one of those kids at school. I am that parent who the caregivers don't believe when I tell them she usually takes two 90 minute naps a day and sometimes a 30 minute late afternoon catnap. You teachers know what I mean..."but they do it at home all the time." But really, I promise. She is a GREAT napper at home. Not so much at school. But, each day she is getting a little better. Today she took three 30 minute naps at daycare and then came home and took a 90 minute nap. The good thing about it is that she is staying up later so we have a little more time to play and enjoy spending time with her before we put her to bed. Luckily she still sleeps great at night and usually wakes up around 6 on her own.
Like I said before, our center has video cameras in the classrooms so that parents can peek in on their kids throughout the day. I really didn't think I would care much about this feature, but it is really comforting to log on to the website occasionally and see her playing with her friends. Its like our own reality show, starring our very own Lily Anne.
Oh, apparently she has a little friend...a little BOYfriend at school. Uh huh. One of the teachers told me that she caught the two of them rolling on the floor hugging today. He is an older man, born in January. Cute as a button too and probably outweighs LA by a good 10 pounds. When I picked her up, the teacher was telling me about this as she was holding the boy and he and Lily Anne were making flirty faces at each other. It was rather cute, however, a certain dad was not happy to hear that some boy was putting the moves on his daughter. I think he is going to try to convince her that boys have cooties.
So, there you have it. The official daycare report. You are welcome Debbie :)
And now, because really, is a post complete without a picture? Here are my two favorite people having a deep conversation. Notice how they even have the same hair.
In fact, she seems to want to be a part of the action so much so that she will not take a decent nap at daycare. Yep, you heard me right. Our awesome little sleeper is one of those kids at school. I am that parent who the caregivers don't believe when I tell them she usually takes two 90 minute naps a day and sometimes a 30 minute late afternoon catnap. You teachers know what I mean..."but they do it at home all the time." But really, I promise. She is a GREAT napper at home. Not so much at school. But, each day she is getting a little better. Today she took three 30 minute naps at daycare and then came home and took a 90 minute nap. The good thing about it is that she is staying up later so we have a little more time to play and enjoy spending time with her before we put her to bed. Luckily she still sleeps great at night and usually wakes up around 6 on her own.
Like I said before, our center has video cameras in the classrooms so that parents can peek in on their kids throughout the day. I really didn't think I would care much about this feature, but it is really comforting to log on to the website occasionally and see her playing with her friends. Its like our own reality show, starring our very own Lily Anne.
Oh, apparently she has a little friend...a little BOYfriend at school. Uh huh. One of the teachers told me that she caught the two of them rolling on the floor hugging today. He is an older man, born in January. Cute as a button too and probably outweighs LA by a good 10 pounds. When I picked her up, the teacher was telling me about this as she was holding the boy and he and Lily Anne were making flirty faces at each other. It was rather cute, however, a certain dad was not happy to hear that some boy was putting the moves on his daughter. I think he is going to try to convince her that boys have cooties.
So, there you have it. The official daycare report. You are welcome Debbie :)
And now, because really, is a post complete without a picture? Here are my two favorite people having a deep conversation. Notice how they even have the same hair.
Sunday, August 2, 2009
I am happy to report...
my friends who recently went through an adoption nightmare (finding out that they and the agency were, in fact, scammed by the birth mother), have now successfully adopted a baby girl!!!!!!!!! She was born on Friday, the papers are SIGNED, and they are going to get custody of her tomorrow. We are so happy for you Jeff and Becky!!
Subscribe to:
Posts (Atom)
