Anderson took one look at the stairs the other night, and on his 2nd try...here's what happened.
Saturday, July 30, 2011
Wednesday, July 20, 2011
Sweet Summertime
Our family has truly enjoyed our summer break, which is quickly coming to an end. Kinsley has enjoyed sleeping in, swimming, and lounging around the house watching TV. Karlie has loved playing outside, going swimming, and playing Barbies. Anderson has enjoyed exploring the house and getting into anything he can get his hands on.
Kinsley is checking the mail everyday to see if she has gotten her letter letting her know who her teacher will be this year. I can't believe she is going into 2nd grade! She doesn't seem big enough to be in 2nd grade already! She isn't a big fan of school, but she does work hard. She's been working on her reading and math skills this summer, so hopefully she hasn't lost much.
Karlie missed going to Kindergarten this year because of her birthday (11 days too late). She is ready for K and was quite disappointed when I told her she had to go to preschool again another year. This summer she has done "school work" too while Kinsley was working. She has practiced her letters, writing her name, and writing numbers. She seems to pick up on new things easily, so I hope that continues when she gets into "real" school.
Anderson continued with physical therapy every other week. He is progressing nicely. He's still not walking, but he is pulling up and cruising. His PT says she is not in a big hurry to get him walking. We want him to master each step of the process before he goes on to the next step. He has definitely mastered crawling- he now does it without even thinking about it. Pulling up has become more natural and automatic also. So now we are working on cruising the furniture. Right now he only does it with support nearby, so our goal is to get him doing it more often and get him more comfortable with it.
He still has his helmet, which has made us spend more time inside this summer as he seems to overheat quickly. We are REALLY hoping to get out of it soon. Anderson also went to see his neurosurgeon for a check-up and he was so impressed with how well he is doing, he released him for a YEAR!! We are very excited about this, as we have been seeing him every 3 months.
Overall it's been a great summer full of swimming, sleeping in, and just spending some quality time together as a family. Now...to enjoy the last 2 weeks before school starts...
Kinsley is checking the mail everyday to see if she has gotten her letter letting her know who her teacher will be this year. I can't believe she is going into 2nd grade! She doesn't seem big enough to be in 2nd grade already! She isn't a big fan of school, but she does work hard. She's been working on her reading and math skills this summer, so hopefully she hasn't lost much.
Karlie missed going to Kindergarten this year because of her birthday (11 days too late). She is ready for K and was quite disappointed when I told her she had to go to preschool again another year. This summer she has done "school work" too while Kinsley was working. She has practiced her letters, writing her name, and writing numbers. She seems to pick up on new things easily, so I hope that continues when she gets into "real" school.
Anderson continued with physical therapy every other week. He is progressing nicely. He's still not walking, but he is pulling up and cruising. His PT says she is not in a big hurry to get him walking. We want him to master each step of the process before he goes on to the next step. He has definitely mastered crawling- he now does it without even thinking about it. Pulling up has become more natural and automatic also. So now we are working on cruising the furniture. Right now he only does it with support nearby, so our goal is to get him doing it more often and get him more comfortable with it.
He still has his helmet, which has made us spend more time inside this summer as he seems to overheat quickly. We are REALLY hoping to get out of it soon. Anderson also went to see his neurosurgeon for a check-up and he was so impressed with how well he is doing, he released him for a YEAR!! We are very excited about this, as we have been seeing him every 3 months.
Overall it's been a great summer full of swimming, sleeping in, and just spending some quality time together as a family. Now...to enjoy the last 2 weeks before school starts...
Wednesday, June 8, 2011
More impressed doctors...
On Tuesday, Anderson went for his year developmental screening at Vanderbilt. At first, a nurse practitioner came in and did most of the screening. She played with him in the floor and then asked me a series of questions. She then left the room and told me she was going to go score the screening and she would be right back. When she came back in, she brought a doctor with her-Not just any doctor, but a doctor who had taken care of Anderson after he was born. Since his condition is not very common, she remembered exactly who he was...and when she walked in the room, her mouth literally dropped open.
She then did a few more little tests on him, and just kept shaking her head in disbelief. She told me she was amazed at how well he is doing. I said, "I know. When he was 4 days old you guys told us he wouldn't be able to do much of anything." She looked me dead in the eye and said, "I know. I remember."
I told her how pleased Jamie and I are with the progress he is making and how well he is doing. She then said, "You should be. You have no idea how pleased you should be. This kid is amazing!"
:) I think I walked out of that office with the biggest smile on my face. The doctor tried to attribute his progress to Jamie and I working with him- BUT we don't take ANY credit at all...we know who deserves all the credit and glory! Thank you Father for this child who is a blessing to so many!
She then did a few more little tests on him, and just kept shaking her head in disbelief. She told me she was amazed at how well he is doing. I said, "I know. When he was 4 days old you guys told us he wouldn't be able to do much of anything." She looked me dead in the eye and said, "I know. I remember."
I told her how pleased Jamie and I are with the progress he is making and how well he is doing. She then said, "You should be. You have no idea how pleased you should be. This kid is amazing!"
:) I think I walked out of that office with the biggest smile on my face. The doctor tried to attribute his progress to Jamie and I working with him- BUT we don't take ANY credit at all...we know who deserves all the credit and glory! Thank you Father for this child who is a blessing to so many!
Monday, June 6, 2011
A Magical Time
Our family just returned from a week long trip to Disney World in Orlando, Florida. My entire family went (15 total) and we had a wonderful time! We are exhausted and still trying to recover, but already looking ahead to when we can go back again.
It's such a magical place. They really don't skimp on anything- everything is over the top! The girls both loved getting to eat supper with all of the Disney Princesses. They also loved the water park. Karlie was actually big enough to ride some of the roller coasters - she has absolutely NO FEAR! That girl is my new riding buddy! Kinsley, on the other hand, is a bit more cautious about what she will or will not ride. But she had a great time even without the roller coasters. Neither of the girls were too fond of the characters- I kind of figured since they both get creeped out every Halloween. Anderson, however, absolutely LOVED the characters.
Our trip worked out where we were there for Anderson's 1st birthday. It was a wonderful day! He got to meet many characters, including his favorite- Mickey Mouse. He had a special hat and button that said it was his birthday and everyone who worked at the park would stop and wish him a happy birthday. At supper that night, we got to eat with Winnie the Pooh, Tigger, Piglet, and Eeyore. The waitress brought out a cupcake with 1 candle and we all sang Happy Birthday to him. He also got a card signed by all the characters. It was a wonderful night.
Both mine and Jamie's favorite part was the fireworks show at Magic Kingdom. TinkerBell flew right over us out of Cinderella's castle, and the whole show just made me feel like a kid all over again. I stood there mesmerized. I actually caught myself tearing up, thinking about the challenges and surgeries that Anderson has already faced in his short life, and thinking about how he has done so well with everything, and how God has blessed us tremendously over the last year...I couldn't think of a bigger celebration than being at Magic Kingdom for the Fireworks spectacular, and I couldn't think of another child or year that deserved such a grand celebration.
We had a wonderful time with many memories made. I will leave you with just a few pictures...
Wednesday, May 18, 2011
The story of "Us"
As I walked into the building for the first day of school my Freshman year, nervous doesn't even touch what I was feeling. Not only was it my first year of high school, but it was also a NEW high school. Plus, many of the students at this school had been together since Preschool. I knew some of them from church, but I was still so scared that I wouldn't fit in. I quickly discovered that there were about 6 other people who were brand new that year also. The six of us bonded rather quickly our freshman year.
There seemed to be an attraction between myself and one of those other newbies- a guy named Jamie. However, we didn't date- we just were good friends our Freshman year. Our sophomore and junior years we weren't as close. He had different girlfriends, I had a serious boyfriend, and we kind of went on separate paths.
However, our senior year led our paths back together. Not without some drama, though. I'm not sure much can happen in high school without a little drama, right? Anyway, we started dating our senior year, and well, the rest is history.
We went off to college together, graduated from college one Saturday and got married the very next weekend.
Many people didn't think we were meant to be together. They said we'd never make it. I'm not going to lie and say that the entire road has been free of bumps or obstacles, but we have been able to overcome every roadblock together. It's been a great 9 years and I look forward to many more years ahead with him by my side!
Happy Anniversary Jamie!!
There seemed to be an attraction between myself and one of those other newbies- a guy named Jamie. However, we didn't date- we just were good friends our Freshman year. Our sophomore and junior years we weren't as close. He had different girlfriends, I had a serious boyfriend, and we kind of went on separate paths.
However, our senior year led our paths back together. Not without some drama, though. I'm not sure much can happen in high school without a little drama, right? Anyway, we started dating our senior year, and well, the rest is history.
We went off to college together, graduated from college one Saturday and got married the very next weekend.
Many people didn't think we were meant to be together. They said we'd never make it. I'm not going to lie and say that the entire road has been free of bumps or obstacles, but we have been able to overcome every roadblock together. It's been a great 9 years and I look forward to many more years ahead with him by my side!
Happy Anniversary Jamie!!
Saturday, May 14, 2011
3 years old
Friday, May 13, 2011
Celebrating!!
We knew with the amount of determination he has, he will be able to accomplish anything he wants. Lately, he has been working REALLY hard to get his body to do what he needed it to do- MOVE. He wanted to get to toys, but couldn't get his body to cooperate and make the necessary coordinated movements. He was getting pretty frustrated...we've been working on it for over a month in PT. Yesterday his therapist explained to me how difficult of a task it is...but in the same breath she said "But he will do it." And today...He did.
Thank you Lord for helping us learn to celebrate the "little things" in life.
Thank you Lord for helping us learn to celebrate the "little things" in life.
Monday, May 2, 2011
The Helmet
Anderson went back to the plastic surgeon today to check on the progress of his helmet therapy. After 5 weeks, it is already possible to see progress. The plastic surgeon was pleased with the results thus far...sent us to the orthotist for some minor adjustments, and told us to come back in 5-6 weeks. We still don't know how long exactly he will have to wear it, but I do know that when we go back on June 13 they will rescan his head and see with numbers and images exactly how much progress has been made and how much is still lacking...praying for his sake that he does not have to wear it all summer.
This kid LOVES to be outside. He can't stand it. He would stay outside all day if he could- but they warned me today that as the weather gets hotter we would have to be careful and limit his time outside so that he does not overheat. This will be near impossible, but we will do what we have to do.
Thanks again to Bling Your Band for the awesome vinyl decor for his helmet!! We have gotten lots of compliments on his bling. However, I did take him to Walmart with me the other day and it seemed none of the million Saturday Walmart shoppers had ever seen a baby in a helmet...wow- the looks, the stares, the whispers...almost like I had a baby alien in my buggy. Now I'm considering getting the bling that says "What are YOU looking at?" or "In three months, my head will be round...in three months, you'll still be ugly." (LOL) No I guess I wouldn't really do that. (maybe) We will just keep smiling our smile and acting like we don't notice the stares.
This kid LOVES to be outside. He can't stand it. He would stay outside all day if he could- but they warned me today that as the weather gets hotter we would have to be careful and limit his time outside so that he does not overheat. This will be near impossible, but we will do what we have to do.
Thanks again to Bling Your Band for the awesome vinyl decor for his helmet!! We have gotten lots of compliments on his bling. However, I did take him to Walmart with me the other day and it seemed none of the million Saturday Walmart shoppers had ever seen a baby in a helmet...wow- the looks, the stares, the whispers...almost like I had a baby alien in my buggy. Now I'm considering getting the bling that says "What are YOU looking at?" or "In three months, my head will be round...in three months, you'll still be ugly." (LOL) No I guess I wouldn't really do that. (maybe) We will just keep smiling our smile and acting like we don't notice the stares.
Wednesday, April 27, 2011
Doing Great
I am so ashamed of my lack of posting. I really don't mean for this blog to only have posts when things are bad, or we are in the hospital, or we are sick or having surgery. Whew, life is just really busy around our house- and I wish I could figure out how to make it slow down a little. Our nightly routine is one that is rushed from the time we pull into the driveway until the time we go to bed. It bothers me that we don't get to spend a whole lot of "quality" time with each other every night, but we do try to make the best of the time we do have.
Thank goodness for American Idol- it's a favorite for our entire family. So every Wednesday and Thursday night we find some time to sit down and watch it (Have I ever mentioned that I love the DVR?)
Anyway, we are all doing great right now. The girls are enjoying the spring weather by getting in some play time outside with the neighborhood kids while Jamie and I are doing dishes or giving Anderson his bath. Karlie gets a little more time than Kinsley due to homework, but Kinsley does eventually make it out to play, even if just for a few minutes.
Anderson could not be any better right now. Jamie and I continue to be amazed at the things he learns to do. He picks up on so many things very quickly- and we just sit back and laugh- the doctors told us he wouldn't have much quality of life...boy were they ever wrong! His quality of life currently consists in:
- rolling his walker all over the house exploring cabinets and anything else he can get his hands on
- using the baby signs for "more", "thank-you", and "stop" pretty consistently
- blowing kisses
- jabbering all day long (man I wish I knew what he was thinking)
- smiling all the time
- rolling and scooting on his belly to get toys out of reach (we are sooo close to crawling)
- starting to pull up on things
These are some of our newest accomplishments. His little personality develops a little more every day. He has the sweetest, most laid-back personality of any baby I have ever been around. But we have also seen that he can have quite a little temper when he is frustrated or not getting his way. That's where the "stop" signing comes in. When he is mad at one of his sisters (or me) for not doing what he wants us to do or doing something he doesn't like, he looks us straight in the eyes and signs "STOP" and then he grunts like he is adding in an exclamation. It really is a funny sight to watch. I will have to try to get it on camera.
We go next week to check in with the plastic surgeon to see how the helmet is working. It is amazing how much of a difference we can see when we take it off at night to wash it. He loves that silly thing. When we take it off, he rubs his head and points to it- he actually wants it back on. The other night he grabbed it off the table and tried to put it on himself. Who would have thought? Not me.
So the Spears family is doing really well right now. We feel so blessed with all three of our children. While our days and nights are hectic, we wouldn't trade it for anything. Thank you Lord for blessing us with these 3 precious children.
We've taken some recent videos but I am having trouble getting them posted. So one day when I figure out what I'm doing wrong, I will post some videos to show you how far Anderson has come.
Thank goodness for American Idol- it's a favorite for our entire family. So every Wednesday and Thursday night we find some time to sit down and watch it (Have I ever mentioned that I love the DVR?)
Anyway, we are all doing great right now. The girls are enjoying the spring weather by getting in some play time outside with the neighborhood kids while Jamie and I are doing dishes or giving Anderson his bath. Karlie gets a little more time than Kinsley due to homework, but Kinsley does eventually make it out to play, even if just for a few minutes.
Anderson could not be any better right now. Jamie and I continue to be amazed at the things he learns to do. He picks up on so many things very quickly- and we just sit back and laugh- the doctors told us he wouldn't have much quality of life...boy were they ever wrong! His quality of life currently consists in:
- rolling his walker all over the house exploring cabinets and anything else he can get his hands on
- using the baby signs for "more", "thank-you", and "stop" pretty consistently
- blowing kisses
- jabbering all day long (man I wish I knew what he was thinking)
- smiling all the time
- rolling and scooting on his belly to get toys out of reach (we are sooo close to crawling)
- starting to pull up on things
These are some of our newest accomplishments. His little personality develops a little more every day. He has the sweetest, most laid-back personality of any baby I have ever been around. But we have also seen that he can have quite a little temper when he is frustrated or not getting his way. That's where the "stop" signing comes in. When he is mad at one of his sisters (or me) for not doing what he wants us to do or doing something he doesn't like, he looks us straight in the eyes and signs "STOP" and then he grunts like he is adding in an exclamation. It really is a funny sight to watch. I will have to try to get it on camera.
We go next week to check in with the plastic surgeon to see how the helmet is working. It is amazing how much of a difference we can see when we take it off at night to wash it. He loves that silly thing. When we take it off, he rubs his head and points to it- he actually wants it back on. The other night he grabbed it off the table and tried to put it on himself. Who would have thought? Not me.
So the Spears family is doing really well right now. We feel so blessed with all three of our children. While our days and nights are hectic, we wouldn't trade it for anything. Thank you Lord for blessing us with these 3 precious children.
We've taken some recent videos but I am having trouble getting them posted. So one day when I figure out what I'm doing wrong, I will post some videos to show you how far Anderson has come.
Wednesday, April 6, 2011
Our Home Away from Home
As I type, we are in our 16th hour at the Vanderbilt Children's Hospital Emergency Department. Anderson began running a fever yesterday that got up to 103.2. We went to his pediatrician who so graciously tried to find something that could be causing the fever, without us having to come up here. BUT, all tests were negative so we had to come and have the shunt checked out.
Jamie and I have learned a few things with every trip we've made to the ER- and the most important one is that just because they know you are coming and are expecting you, doesn't mean you will get seen more quickly. So, before we headed up here, we went home and ate supper (thank you Mama Jane!), we packed the girls' things and sent them off to Aunt Colyn (again- bless her heart), and we took showers. I know that sounds strange, but when you know that you will be sitting in a little room without a shower for the next 15-24 hours, it makes it all a little better just knowing you're clean.
So we arrived last night around 7pm. They began by running the same tests that had already been done by our Pediatrician- actually told us they thought their lab was better and that some of the tests may be positive by now...they were wrong. So about 11:30 last night they started the usual tests for the shunt. Poor Anderson ended up having 2 flu swabs, 2 RSV swabs, a catheter to check his urine, an IV, blood work, urine cultures and blood cultures, 5 XRays, an MRI, and a shunt tap- all while running a 103 temp, not being allowed to eat or drink, no IV fluids, and just flat out didn't feel well at all. Needless to say it was a long night.
Update: We are now home. I didn't get to finish this post before we left the hospital.
They never did find the culprit for the fever and high WBC. So they decided it was a virus. I am so thankful that it wasn't the shunt because an infected shunt is a pretty big ordeal. He has pretty much slept since we left the hospital, but when he is awake he is not a happy camper, especially while the fever is up. Thanks to everyone for their prayers. We are thankful to be home and thankful for "just a virus" when it could have been much worse.
Jamie and I have learned a few things with every trip we've made to the ER- and the most important one is that just because they know you are coming and are expecting you, doesn't mean you will get seen more quickly. So, before we headed up here, we went home and ate supper (thank you Mama Jane!), we packed the girls' things and sent them off to Aunt Colyn (again- bless her heart), and we took showers. I know that sounds strange, but when you know that you will be sitting in a little room without a shower for the next 15-24 hours, it makes it all a little better just knowing you're clean.
So we arrived last night around 7pm. They began by running the same tests that had already been done by our Pediatrician- actually told us they thought their lab was better and that some of the tests may be positive by now...they were wrong. So about 11:30 last night they started the usual tests for the shunt. Poor Anderson ended up having 2 flu swabs, 2 RSV swabs, a catheter to check his urine, an IV, blood work, urine cultures and blood cultures, 5 XRays, an MRI, and a shunt tap- all while running a 103 temp, not being allowed to eat or drink, no IV fluids, and just flat out didn't feel well at all. Needless to say it was a long night.
Update: We are now home. I didn't get to finish this post before we left the hospital.
They never did find the culprit for the fever and high WBC. So they decided it was a virus. I am so thankful that it wasn't the shunt because an infected shunt is a pretty big ordeal. He has pretty much slept since we left the hospital, but when he is awake he is not a happy camper, especially while the fever is up. Thanks to everyone for their prayers. We are thankful to be home and thankful for "just a virus" when it could have been much worse.
Friday, April 1, 2011
All Blinged Out!
Well...it arrived today.
I've been checking the mail all week.
It's very exciting.
My sweet Anderson has gone from sweet in blue, to.....
...Sporting some BLING!
Is he not the sweetest thing? I think so- even if he is mine.
Here are some more pics...
Monday, March 28, 2011
Refreshed
Last week the girls and I went to the beach for Spring Break with some friends of ours. We had a great time. We relaxed more than I knew was possible, we had a blast playing/fighting in the pool, we built a sand turtle at the beach, I read an entire book, and we just enjoyed being together. It was good for all of us. Of course I missed Jamie and sweet Anderson the entire time, but it was a much-needed break. We are glad to be home and back to the day-to-day routine of this thing called life.
Anderson had some problems with his helmet before I left. Suddenly the shunt swelled up and got really red- meaning the helmet was putting pressure on it- like it's NOT supposed to. So we had to take the helmet off and didn't put it back on until Jamie could get Anderson back up to Nashville to get it adjusted again. However, I think it is right this time. It seems to be fitting much better. He got used to it really fast again this time. I'm not going to post pictures until we get the "bling" for it, so I can show before and after pictures, but let me tell you this little guy looks adorable in his little blue helmet! He is doing great!
We have started physical therapy once a week right now. We're working mostly on gross motor skills- specifically teaching him that he doesn't have to just sit still in one place- we're trying to get him moving. He does really well and is making progress, but he's still not crawling. I'm not too worried, though. I know he will do things in his own time. I love his Physical Therapist-she is awesome. She keeps pushing him to do it even when he is in meltdown mode and wants to quit. She knows just how far to push him and when it's enough. Now we are just trying to continue with that intensity when we work with him here at home.
He is also still seeing his Early Intervention teacher once a month. She comes later this week to work with him and see how well he is doing. Last month he had a great visit and she was really pleased with his cognitive and fine motor skills. We are still trying to do some baby signs. He hasn't really picked up on any yet, but I'm trying not to get discouraged. Thank you to everyone for the comments and emails about your successes with signs. ( Especially to my cousin the Speech Pathologist for her professional view and successes!) We are trying them, but not sure we have been as consistent with them as we need to be. This is a new goal of mine...sometimes we just get so caught up in our daily routines that we forget to sign. (Sigh)
Thanks to all of our continued readers. Thank you also for those of you who are praying for Lucy and her family. We all know that God answers prayers. Our little man is proof of that!
Anderson had some problems with his helmet before I left. Suddenly the shunt swelled up and got really red- meaning the helmet was putting pressure on it- like it's NOT supposed to. So we had to take the helmet off and didn't put it back on until Jamie could get Anderson back up to Nashville to get it adjusted again. However, I think it is right this time. It seems to be fitting much better. He got used to it really fast again this time. I'm not going to post pictures until we get the "bling" for it, so I can show before and after pictures, but let me tell you this little guy looks adorable in his little blue helmet! He is doing great!
We have started physical therapy once a week right now. We're working mostly on gross motor skills- specifically teaching him that he doesn't have to just sit still in one place- we're trying to get him moving. He does really well and is making progress, but he's still not crawling. I'm not too worried, though. I know he will do things in his own time. I love his Physical Therapist-she is awesome. She keeps pushing him to do it even when he is in meltdown mode and wants to quit. She knows just how far to push him and when it's enough. Now we are just trying to continue with that intensity when we work with him here at home.
He is also still seeing his Early Intervention teacher once a month. She comes later this week to work with him and see how well he is doing. Last month he had a great visit and she was really pleased with his cognitive and fine motor skills. We are still trying to do some baby signs. He hasn't really picked up on any yet, but I'm trying not to get discouraged. Thank you to everyone for the comments and emails about your successes with signs. ( Especially to my cousin the Speech Pathologist for her professional view and successes!) We are trying them, but not sure we have been as consistent with them as we need to be. This is a new goal of mine...sometimes we just get so caught up in our daily routines that we forget to sign. (Sigh)
Thanks to all of our continued readers. Thank you also for those of you who are praying for Lucy and her family. We all know that God answers prayers. Our little man is proof of that!
Friday, March 18, 2011
Bad blogger, neuro, helmet, and a special request
You know what I really dislike? When I find a blog to follow and I get so involved in the story that I start checking it everyday for updates....but for some reason the blog author doesn't post near as often as she promised...and everyday that I check, I see the same old blog post from a few weeks ago-
Wait- I think I'm talking about me. Yes, I just realized that I left the last post kind of like I would update it the next day or so....for those of you who have been checking it frequently, I do apologize. I have very good intentions (yes I know the saying about good intentions) but then life happens and I forget about our blog.
So, where shall I start....Ah- our post-op visit with the neurosurgeon. We went back on March 7 for a follow-up. It was awesome! The neurosurgeon actually said "WOW" when he pulled up Anderson's MRI before his Feb. 1 surgery and compared it with the most recent ER visit MRI. I have no idea how to read MRI films...but I can tell you that there is no question that God is working on this little man. The surgeon sat and went over the MRI and explained and pointed and showed me the differences. My mouth was on the floor...the difference is HUGE! And when we were leaving, he said he thinks they finally got the shunt just right. It's obviously working and doing its job. There is definitely brain tissue there- though not as much as there should be. Again they were very impressed with how well Anderson is doing- developmentally. In fact, they continue to be astounded when they see him. He brings a smile to everyone's face that he comes into contact with.
After his neuro visit went so well, I decided to swing by the helmet place to see about getting him rescanned and fitted for another helmet since we had surgery 3 days before we were supposed to pick up the first helmet. They were able to work us in and this past Wednesday we went and picked up the helmet. This kid is a trooper. We were so worried about how he would do while trying to adjust to wearing it. He leaves it alone, doesn't cry, and is even already sleeping all night with it on. I will be posting pictures soon...we are waiting on some "bling" for his band. If you wonder what I am talking about, click here.
The girls are doing well also. They are so excited for warmer weather. They are flip-flops and shorts kind of girls (like their momma). With the time change, they are getting some time to play outside after we get home from school. Kinsley is currently missing all of her front teeth- top and bottom. The bottom ones are trying to come in, but the top ones are completely empty. I would love to post a picture but she refuses to let me take a picture. I will try to catch her off-guard. Karlie has been having some bladder and tummy problems, but she keeps on going. She loves her preschool, but also loves the days she gets to stay in her PJ's and go to the sitter's house. They are both great helpers and still think their brother is pretty special, and his eyes light up when they come into a room.
The girls and I are getting ready to soon head to the beach with some friends for a girls' trip. I know I will miss Anderson (and Jamie) like crazy, but I am looking forward to a relaxing week soaking up the sun, playing with the girls, and maybe even reading an entire book. :)
One last thing tonight- you probably noticed the "Pray for Lucy" picture on the blog. We do not know this family personally, but heard their story through a co-worker of Jamie's. Their family is very similar to ours (3 young children: 2 girls, and a baby boy) Their children are all within 1 year of the same age as our children, and their middle child, Lucy, just recently found out she has cancer. A trip to the pediatrician for what they thought was a stomach virus/dehydration, led them straight into surgery to remove tumors from her spine and brain. She has had so many complications from this surgery, she hasn't even made it to St. Jude to begin her treatments yet. Just today she underwent surgery for a shunt, due to leaking spinal fluid after surgery.
I know the regular readers of this blog are believers in the power of prayer and right now this little girl and her family can use all of them they can get. Can you please join us in praying for Lucy, her mom and dad, and her 2 siblings who have been passed around without their parents at home for almost a month now? Check out her blog for more details.
Thanks for sticking with me. I know I am a bad blogger...I would promise I will do better, but I'm afraid I won't keep up with that promise. :)
Wait- I think I'm talking about me. Yes, I just realized that I left the last post kind of like I would update it the next day or so....for those of you who have been checking it frequently, I do apologize. I have very good intentions (yes I know the saying about good intentions) but then life happens and I forget about our blog.
So, where shall I start....Ah- our post-op visit with the neurosurgeon. We went back on March 7 for a follow-up. It was awesome! The neurosurgeon actually said "WOW" when he pulled up Anderson's MRI before his Feb. 1 surgery and compared it with the most recent ER visit MRI. I have no idea how to read MRI films...but I can tell you that there is no question that God is working on this little man. The surgeon sat and went over the MRI and explained and pointed and showed me the differences. My mouth was on the floor...the difference is HUGE! And when we were leaving, he said he thinks they finally got the shunt just right. It's obviously working and doing its job. There is definitely brain tissue there- though not as much as there should be. Again they were very impressed with how well Anderson is doing- developmentally. In fact, they continue to be astounded when they see him. He brings a smile to everyone's face that he comes into contact with.
After his neuro visit went so well, I decided to swing by the helmet place to see about getting him rescanned and fitted for another helmet since we had surgery 3 days before we were supposed to pick up the first helmet. They were able to work us in and this past Wednesday we went and picked up the helmet. This kid is a trooper. We were so worried about how he would do while trying to adjust to wearing it. He leaves it alone, doesn't cry, and is even already sleeping all night with it on. I will be posting pictures soon...we are waiting on some "bling" for his band. If you wonder what I am talking about, click here.
The girls are doing well also. They are so excited for warmer weather. They are flip-flops and shorts kind of girls (like their momma). With the time change, they are getting some time to play outside after we get home from school. Kinsley is currently missing all of her front teeth- top and bottom. The bottom ones are trying to come in, but the top ones are completely empty. I would love to post a picture but she refuses to let me take a picture. I will try to catch her off-guard. Karlie has been having some bladder and tummy problems, but she keeps on going. She loves her preschool, but also loves the days she gets to stay in her PJ's and go to the sitter's house. They are both great helpers and still think their brother is pretty special, and his eyes light up when they come into a room.
The girls and I are getting ready to soon head to the beach with some friends for a girls' trip. I know I will miss Anderson (and Jamie) like crazy, but I am looking forward to a relaxing week soaking up the sun, playing with the girls, and maybe even reading an entire book. :)
One last thing tonight- you probably noticed the "Pray for Lucy" picture on the blog. We do not know this family personally, but heard their story through a co-worker of Jamie's. Their family is very similar to ours (3 young children: 2 girls, and a baby boy) Their children are all within 1 year of the same age as our children, and their middle child, Lucy, just recently found out she has cancer. A trip to the pediatrician for what they thought was a stomach virus/dehydration, led them straight into surgery to remove tumors from her spine and brain. She has had so many complications from this surgery, she hasn't even made it to St. Jude to begin her treatments yet. Just today she underwent surgery for a shunt, due to leaking spinal fluid after surgery.
I know the regular readers of this blog are believers in the power of prayer and right now this little girl and her family can use all of them they can get. Can you please join us in praying for Lucy, her mom and dad, and her 2 siblings who have been passed around without their parents at home for almost a month now? Check out her blog for more details.
Thanks for sticking with me. I know I am a bad blogger...I would promise I will do better, but I'm afraid I won't keep up with that promise. :)
Sunday, March 6, 2011
March! I thought you'd never come...
Last week was great! Our entire family has recovered from all of the sicknesses that February had brought.The sun shone brightly, the temperature felt like Spring, and the girls even busted out their flipflops from the attic! I love spring weather. It just makes me feel happy. I am so glad that March is here, and I hope it brings more sunshine than rain....both weather-wise as well as emotionally and physically for us.
Anderson is doing great. We still have no idea what caused his fever or head increase that caused our last ER visit. We pretty much left with no answers. However, he has his follow-up from his past surgery tomorrow with his neurosurgeon. I have A LOT of questions that I hope to get answered.
We have started measuring his head circumference every single day so that they can not pretend like his head size didn't increase due to a mis-measurement. (That's what 2 doctors tried to tell us at this last ER visit). But I know better. I know that it did increase 2 cm overnight, and I wish they had taken that more seriously. Next time I will know for sure when it changes and how much.
I will find out tomorrow if Anderson is still going to do his helmet therapy or not. As a matter of fact, now that he has a shunt that has drained that cyst, his head looks much better- not perfect, but better. Plus I want his neuro doctor to give the okay since the shunt tubing goes from the top of his head down the back of his head- I'm sure they don't want the helmet to put pressure on that tubing, but that side of his head is the one that needs the pressure to be "pushed" in. We will see what we find out.
We will also be going back soon to PT. Now that he is doing so much more, I am anxious to hear what the plan will be in this area. When Anderson's Early Intervention teacher came this month, she was very impressed with how well he is doing. Cognitively he is still advanced. We are working on crawling right now...he wants to so badly, but he just hasn't figured out all of the movements yet. He just gets on all fours and rocks back and forth until he gets tired and then lays down and rolls over onto his back. Maybe movement is coming soon. We are working hard with him on this.
We are also starting some "baby signs" with him. We are starting slowly with only 4 signs (eat, more, night-night, all done). I'm a little skeptical about him using these...so if you have a success story please share it with me. I'm afraid that if he gets used to using the sign, then he will be delayed in his speech...any opinions on this matter?
I hope that March brings many new milestones and continued good health (for all). Hoping to post soon with more updates and success stories! :)
Anderson is doing great. We still have no idea what caused his fever or head increase that caused our last ER visit. We pretty much left with no answers. However, he has his follow-up from his past surgery tomorrow with his neurosurgeon. I have A LOT of questions that I hope to get answered.
We have started measuring his head circumference every single day so that they can not pretend like his head size didn't increase due to a mis-measurement. (That's what 2 doctors tried to tell us at this last ER visit). But I know better. I know that it did increase 2 cm overnight, and I wish they had taken that more seriously. Next time I will know for sure when it changes and how much.
I will find out tomorrow if Anderson is still going to do his helmet therapy or not. As a matter of fact, now that he has a shunt that has drained that cyst, his head looks much better- not perfect, but better. Plus I want his neuro doctor to give the okay since the shunt tubing goes from the top of his head down the back of his head- I'm sure they don't want the helmet to put pressure on that tubing, but that side of his head is the one that needs the pressure to be "pushed" in. We will see what we find out.
We will also be going back soon to PT. Now that he is doing so much more, I am anxious to hear what the plan will be in this area. When Anderson's Early Intervention teacher came this month, she was very impressed with how well he is doing. Cognitively he is still advanced. We are working on crawling right now...he wants to so badly, but he just hasn't figured out all of the movements yet. He just gets on all fours and rocks back and forth until he gets tired and then lays down and rolls over onto his back. Maybe movement is coming soon. We are working hard with him on this.
We are also starting some "baby signs" with him. We are starting slowly with only 4 signs (eat, more, night-night, all done). I'm a little skeptical about him using these...so if you have a success story please share it with me. I'm afraid that if he gets used to using the sign, then he will be delayed in his speech...any opinions on this matter?
I hope that March brings many new milestones and continued good health (for all). Hoping to post soon with more updates and success stories! :)
Sunday, February 20, 2011
Having a shunt changes everything...
As you read in my last post, there has been a lot of sickness in the Spears family lately. First our 2 shunt revisions the first week of February, then the next week Karlie had the flu, then this past week Kinsley had the flu, then on Friday Karlie woke up with a bad bladder infection...I made the mistake of asking "What else can happen?"
Anderson was with his Aunt CaCa (Jamie's sister) since Kinsley had the flu and we didn't want him to get sick. She called me Friday before lunch and told me he was running a low fever, didn't sleep well the night before, and wouldn't take a bottle. Oh boy... here we go. I was afraid that he was coming down with the flu- even though we had gotten him out of the house and away from the girls both times. So we went to the Pediatrician's office, where we had just been on Thursday to get the stitches out from our last surgery. They did a flu swab, checked for RSV, and did some bloodwork. Everything was negative except the bloodwork showed a small possibility for a virus. Usually at this point they send you home, tell you it's a virus and if you get worse then come back. However, his head circumference had changed from 48cm to 50.5cm since the day before...and when you have a shunt, that changes everything.
So they put in a call to our neurosurgeon, who told them we needed to come to ER to be checked out. We hopped in the car, picked up Jamie from work, made sure the girls were okay with Jamie's dad, and off we went.
All I will say about Friday night at the ER is be glad that I didn't have a computer...it was the most frustrating and tiring 21 hours of my life. I think for now, I will play the Forrest Gump card and say "That's all I have to say about that!" :)
We eventually got to a room (where we still are). They don't have any idea what is going on. They don't think anything is wrong with the new(est) shunt, but aren't positive. His fever disappeared as soon as we got the hospital, and the feeding issues resolved themselves last night. We've had 2 IV's, been catheterized for urine, had an MRI, a CT scan, and a shunt series of xrays. Oh yes, and they also tapped the shunt.
What have all of these tests revealed? Well here are a few things we know now that we didn't know before Friday:
- The cyst has shrunk significantly in size since our surgery 2 weeks ago, and possibly has collapsed. In December the cyst measured 13cm in length- it is now down to 3.8cm.
- Now that the cyst is smaller, they are able to get a better view of how much brain tissue there is on the right side. Remember that when he was first born, they didn't think there was much, if any, brain tissue. We now know that there is brain tissue on the right side, but not quite all of it is there. There is some brain tissue on the top of his right hemisphere that is missing.
- The MRI labled him as having "dysgenesis" of the corpus callosum rather than "agenesis". Agenesis means it's not there at all, dysgenesis means it is there- but either not all there or malformed. The neurosurgeon said functionally they have the same results...I'm going to check more into this because every MRI in the past has said agenesis. It might not matter to him, but it does to me.
Two doctors came in this morning and told us we could go home now that he is eating and feeling better. Then about 2 hours later they came back and said they want us to stay another night so that our neurosurgeon can look at all of the test results and give us the okay to go home. I'm not sure what changed their minds, but we will wait until tomorrow and see if we find out anything else. Until then...
Anderson was with his Aunt CaCa (Jamie's sister) since Kinsley had the flu and we didn't want him to get sick. She called me Friday before lunch and told me he was running a low fever, didn't sleep well the night before, and wouldn't take a bottle. Oh boy... here we go. I was afraid that he was coming down with the flu- even though we had gotten him out of the house and away from the girls both times. So we went to the Pediatrician's office, where we had just been on Thursday to get the stitches out from our last surgery. They did a flu swab, checked for RSV, and did some bloodwork. Everything was negative except the bloodwork showed a small possibility for a virus. Usually at this point they send you home, tell you it's a virus and if you get worse then come back. However, his head circumference had changed from 48cm to 50.5cm since the day before...and when you have a shunt, that changes everything.
So they put in a call to our neurosurgeon, who told them we needed to come to ER to be checked out. We hopped in the car, picked up Jamie from work, made sure the girls were okay with Jamie's dad, and off we went.
All I will say about Friday night at the ER is be glad that I didn't have a computer...it was the most frustrating and tiring 21 hours of my life. I think for now, I will play the Forrest Gump card and say "That's all I have to say about that!" :)
We eventually got to a room (where we still are). They don't have any idea what is going on. They don't think anything is wrong with the new(est) shunt, but aren't positive. His fever disappeared as soon as we got the hospital, and the feeding issues resolved themselves last night. We've had 2 IV's, been catheterized for urine, had an MRI, a CT scan, and a shunt series of xrays. Oh yes, and they also tapped the shunt.
What have all of these tests revealed? Well here are a few things we know now that we didn't know before Friday:
- The cyst has shrunk significantly in size since our surgery 2 weeks ago, and possibly has collapsed. In December the cyst measured 13cm in length- it is now down to 3.8cm.
- Now that the cyst is smaller, they are able to get a better view of how much brain tissue there is on the right side. Remember that when he was first born, they didn't think there was much, if any, brain tissue. We now know that there is brain tissue on the right side, but not quite all of it is there. There is some brain tissue on the top of his right hemisphere that is missing.
- The MRI labled him as having "dysgenesis" of the corpus callosum rather than "agenesis". Agenesis means it's not there at all, dysgenesis means it is there- but either not all there or malformed. The neurosurgeon said functionally they have the same results...I'm going to check more into this because every MRI in the past has said agenesis. It might not matter to him, but it does to me.
Two doctors came in this morning and told us we could go home now that he is eating and feeling better. Then about 2 hours later they came back and said they want us to stay another night so that our neurosurgeon can look at all of the test results and give us the okay to go home. I'm not sure what changed their minds, but we will wait until tomorrow and see if we find out anything else. Until then...
Tuesday, February 15, 2011
Trying to get ahead...
It seems that the Spears clan can not get ahead lately... Jamie and I have missed more days of work in the past 2 months than we have in probably the past 2 years. Our family is usually very healthy and seem to bypass many of the sicknesses/viruses that go around- but not this year.
We had Anderson's shunt revision in December. Then another 2 shunt revisions in February.
The very next week Karlie got the flu and fought it for 4-5 days.
This morning, Kinsley woke up with a stomach virus.
So I'm home. Again.
I love my kids and I don't mind at all to take care of them when they are sick or need me...but it seems to have hit all 3 kids this year and has made for a rough February.
I always volunteer to "take one for the team" and take care of the sickly child- being a teacher, I have a pretty strong immune system. So far Jamie and Ihave been lucky, but I feel like I might need to "knock on wood" as I type that.
Hopefully everyone will soon be back on the mend and no one else will get sick.
Anderson is still recovering nicely from his surgery. In fact, he's doing really good. I need to post some new pics/videos. He is the happiest, strongest kid I know. I am anxious for him to go back for another PT eval now that he is able to do so much more.
I will try to do a longer update on him soon with pictures and everything, but for now...I am off to check on Kinsley.
We had Anderson's shunt revision in December. Then another 2 shunt revisions in February.
The very next week Karlie got the flu and fought it for 4-5 days.
This morning, Kinsley woke up with a stomach virus.
So I'm home. Again.
I love my kids and I don't mind at all to take care of them when they are sick or need me...but it seems to have hit all 3 kids this year and has made for a rough February.
I always volunteer to "take one for the team" and take care of the sickly child- being a teacher, I have a pretty strong immune system. So far Jamie and Ihave been lucky, but I feel like I might need to "knock on wood" as I type that.
Hopefully everyone will soon be back on the mend and no one else will get sick.
Anderson is still recovering nicely from his surgery. In fact, he's doing really good. I need to post some new pics/videos. He is the happiest, strongest kid I know. I am anxious for him to go back for another PT eval now that he is able to do so much more.
I will try to do a longer update on him soon with pictures and everything, but for now...I am off to check on Kinsley.
Thursday, February 3, 2011
See for yourself
We are amazed at this little man! We are home and he hasn't missed a beat! He has picked up doing everything he was doing before this last episode. As you can see with your own eyes, he looks great... (Please excuse my shaky hand while videoing...I'm not very good at it.) This video was taken when we first got home yesterday and we were unpacking our things...it's just taken me this long to figure out how to post the silly video!
Going home!
Anderson had a great night last night. Neurosurgery came in this morning and gave us the OK to go home today. Yippee!!!
This smile pretty much sums up how happy we all are today:
Wednesday, February 2, 2011
A not-so-subtle Sign
Anderson slept great last night, which allowed Jamie and me to also get some rest. He was happy this morning and seemed to feel pretty good. The surgeon's nurse practitioner came to talk to us and make sure we understood what the plan was for today. Her name is Angel.
They came and got us at 8:30 to take us downstairs for surgery. When we got to the Pre-Op holding area, we were introduced to our nurse- Hope. At that point I knew everything was going to be okay. It was another one of those moments that I could just feel God's presence all around us! He didn't want me to miss that, so we had angel and hope all around us! :)
It ended up being around 10:30 before they took him backto surgery. It lasted about 45 minutes. When the surgeon walked in this time, he looked much more pleased. The surgery had been a success! They went in through a spot on the top of his head and were able to see the cyst and successfully get the catheter through the cyst wall. He feels this shunt should last awhile, although there are never any promises with shunts.
We are in a regular room, and Anderson is sleeping peacefully. He doesn't seem to be in a lot of pain right now, so I pray that continues to be the case. If we have a good night and everything looks good we should come home some time tomorrow.
Again thank you for the prayers. We had no idea we were in for all of this when we came to the ER Monday night. You've probably noticed that when I have a lot on my mind I like to blog about it- I guess that's my therapy. But the best part is all of the calls, prayers, and comments on my facebook page- that always makes me feel like we are surrounded by people who love and care about Anderson, and who know that God is able to heal and aren't afraid to ask Him to do just that.
They came and got us at 8:30 to take us downstairs for surgery. When we got to the Pre-Op holding area, we were introduced to our nurse- Hope. At that point I knew everything was going to be okay. It was another one of those moments that I could just feel God's presence all around us! He didn't want me to miss that, so we had angel and hope all around us! :)
It ended up being around 10:30 before they took him backto surgery. It lasted about 45 minutes. When the surgeon walked in this time, he looked much more pleased. The surgery had been a success! They went in through a spot on the top of his head and were able to see the cyst and successfully get the catheter through the cyst wall. He feels this shunt should last awhile, although there are never any promises with shunts.
We are in a regular room, and Anderson is sleeping peacefully. He doesn't seem to be in a lot of pain right now, so I pray that continues to be the case. If we have a good night and everything looks good we should come home some time tomorrow.
Again thank you for the prayers. We had no idea we were in for all of this when we came to the ER Monday night. You've probably noticed that when I have a lot on my mind I like to blog about it- I guess that's my therapy. But the best part is all of the calls, prayers, and comments on my facebook page- that always makes me feel like we are surrounded by people who love and care about Anderson, and who know that God is able to heal and aren't afraid to ask Him to do just that.
Tuesday, February 1, 2011
Some bad news and some good news...
Whew...it's been a long day(s)...if this post is all over the place please forgive me, as I have now been 33 hours without sleep...(almost just as long without a shower...ewww). I'm hoping to fix both of these problems as soon as I type this post to update everyone on how things went today.
Let's do the not-so-good news first. You know it's not good when your surgeon walks into the conference room and says, "Things went okay." You also know it's not good when your surgeon, who is one of the top surgeons in the world when it comes to shunts says, "I haven't quite figured out how to fix this."
When they went in today, they again replaced the entire shunt system (not what I wanted), but our surgeon was not pleased at all with the amount of fluid that came out of the shunt when it was initially placed. Here's what he thinks is the problem: the lining of the cyst is so thick that he doesn't think the catheter of the shunt is getting poked all the way into the cyst. He feels that when he is putting the catheter in, it is just pushing against the cyst and maybe poking it some, but not completely puncturing the cyst to drain the fluid. He's not happy with this. He doesn't want us to leave without it fixed. ( I love him for this!) However, he's not sure what to do to fix it. He was very frustrated when he came out of surgery and honestly admitted that he needed to "figure it out." So he told us that Anderson would go from the recovery room to a CT scan to see where the shunt is compared to the cyst. If the shunt is not completely in the cyst (which he already feels it isn't because they only got a trickle of fluid out) then Anderson will go back into surgery tomorrow to try something different.
At this point, we are awaiting to hear what decision the doctors feel is best. Last we heard they were downstairs looking at the CT scan and trying to "problem solve".
While this isn't the best news, it's not that bad either. I mean, I don't want him to go back into surgery tomorrow, but if it saves him future surgeries, then it's a win. It does make me nervous that this may not be a "routine" surgery tomorrow. I do feel sorry for Anderson that he has to undergo another surgery, if that is what they decide. But in the big picture, I see the benefit of it.
The good news...remember that I specifically asked all of you to pray that Anderson would not be in as much pain with this surgery as his last one? Well...thank you for praying that specific prayer. I know you did, because after surgery on his way to the CT scan, he was playing with his toes, rolling in his bed, and talking. You absolutely could not tell that he had just come out of surgery with a large incision on his head and abdomen. It's powerful and amazing to watch him this afternoon. He is a totally different child than the day of our last surgery. God is so good!
Thank you for all of your thoughts, prayers, and kind words today. Please continue to pray- especially for the doctors as they try to figure all of this out and do what is best for Anderson.
Let's do the not-so-good news first. You know it's not good when your surgeon walks into the conference room and says, "Things went okay." You also know it's not good when your surgeon, who is one of the top surgeons in the world when it comes to shunts says, "I haven't quite figured out how to fix this."
When they went in today, they again replaced the entire shunt system (not what I wanted), but our surgeon was not pleased at all with the amount of fluid that came out of the shunt when it was initially placed. Here's what he thinks is the problem: the lining of the cyst is so thick that he doesn't think the catheter of the shunt is getting poked all the way into the cyst. He feels that when he is putting the catheter in, it is just pushing against the cyst and maybe poking it some, but not completely puncturing the cyst to drain the fluid. He's not happy with this. He doesn't want us to leave without it fixed. ( I love him for this!) However, he's not sure what to do to fix it. He was very frustrated when he came out of surgery and honestly admitted that he needed to "figure it out." So he told us that Anderson would go from the recovery room to a CT scan to see where the shunt is compared to the cyst. If the shunt is not completely in the cyst (which he already feels it isn't because they only got a trickle of fluid out) then Anderson will go back into surgery tomorrow to try something different.
At this point, we are awaiting to hear what decision the doctors feel is best. Last we heard they were downstairs looking at the CT scan and trying to "problem solve".
While this isn't the best news, it's not that bad either. I mean, I don't want him to go back into surgery tomorrow, but if it saves him future surgeries, then it's a win. It does make me nervous that this may not be a "routine" surgery tomorrow. I do feel sorry for Anderson that he has to undergo another surgery, if that is what they decide. But in the big picture, I see the benefit of it.
The good news...remember that I specifically asked all of you to pray that Anderson would not be in as much pain with this surgery as his last one? Well...thank you for praying that specific prayer. I know you did, because after surgery on his way to the CT scan, he was playing with his toes, rolling in his bed, and talking. You absolutely could not tell that he had just come out of surgery with a large incision on his head and abdomen. It's powerful and amazing to watch him this afternoon. He is a totally different child than the day of our last surgery. God is so good!
Thank you for all of your thoughts, prayers, and kind words today. Please continue to pray- especially for the doctors as they try to figure all of this out and do what is best for Anderson.
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