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.

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.

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...

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!

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. :)

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! :)

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...

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.

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:

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.

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.

Surgery #3

We received word this morning that Anderson's shunt revision is scheduled for 9:30 am today. We are just trying to keep him happy, as he is very hungry. We are praying for the surgeons and that the surgery goes well with good results and minimal pain.

Thanks for any prayers you can send our way! He is already living proof that prayers are answered and God still performs miracles!

I will update more after surgery.

Same song, third verse...

Saturday night Jamie and I began to notice that Anderson wasn't using his left arm much...we also noticed that he kept falling over to his left while he was sitting up- even in his highchair...he had also been really fussy, and sleepy. Sunday afternoon I put it all together and told Jamie "His shunt isn't working." He gave me a look and said, "You know, I was thinking the same thing." So we kept watching him...apparently he does not have the normal signs of shunt malfunction, but somehow we both just KNEW that's what was wrong.

I got out the tape measure to do a head measurement and realized quickly that his head has grown 2 cm since our visit with the neurosurgeon on the 24th (one week). I knew this wasn't good and immediately put in a message to the doctor.

The doctor told us to come in through the ER so that we could get the MRI done quickly. Even in a waiting room that was overflowing with sick children, we were taken immediately to a room and had already seen 2 doctors in about 15 minutes of being here.

We had an MRI and a shunt series of xrays. We were told that everything looked pretty good. The last step was a shunt tap to check the fluid....when they tried to tap the shunt, they couldn't get ANY fluid out- which means it isn't working. So...we are having surgery #3 sometime tomorrow. It has been less than 2 months since our last shunt revision, and I can't stand that he is having to go through this again, especially so soon.

I am hoping that we caught it quickly enough this time that only a piece in his head has to be replaced and not the whole thing like last time...please say a little prayer for Anderson tomorrow. Specifically that he will not have as much pain this time as last time and that this shunt will work for longer than a few months.

Thanks for all prayers. They work and mean the world to us.

Still here...

I decided I needed to let everyone know that we did not skip town with the New Year- we are still here, just haven't had much to write about. In fact, I've been a little lazy. We've had a few snow systems come through- which of course means no school. So we have spent many days lounging around the house, playing games, watching movies, and just relaxing. We have ventured out to play in the snow, but only when Anderson was taking a nap- he's not too sure what to think of all the white stuff.

We are all doing well. Anderson is officially sitting up by himself. He loves to sit and play with all of the "loud" toys he got for Christmas. I still don't understand why toy companies think babies are deaf and that the toys have to be SO loud....whew. But it seems the louder they are, the more he likes them- so I guess they have it all figured out.

Tomorrow we will venture back to Vanderbilt. We will visit the neurosurgeon for his 6 week follow-up from his last surgery (has it already been 6 weeks?). We will also go to get fitted for his cranial helmet. Once he gets fitted, we will go back in about 10 days to get it. Then he will be sporting his helmet for 4-6 months. Fun times! I've already been researching some cute, I mean neat, decorating ideas for his helmet. There are some cute ones out there ( as cute as they can be) that are personalized with any theme you could want. I've also found some really cute bibs and shirts with sayings on them about being a "helmet baby".

My favorite so far:

He is also going for a PT evaluation this week to determine if PT services are needed or not. His EI teacher and I were concerned that even though he is sitting up and doing other things, he HATES his stomach and therefore will not roll without prompting. He also won't prop himself on his forearms or try to move toward an object while on his stomach. So we will go for an eval this week and find out if he just needs more time or needs to strengthen his upper body muscles.

So, it's going to be a busy week.

Also, our pregnancy journey with Anderson was posted on the ACC blog in a section that is titled "ACC and Moms-to-Be". Look for the link on the right side of the page. I very much enjoyed getting to share our story in hopes that someone out there who was expecting a baby and had received this diagnosis could see that it's not the end of the world. I want as many people as possible to know our story and see how God has worked in our lives and truly blessed our family and many others with Anderson. I have really been bothered by the fact that there is only a small amount of information out there available for people who are given this diagnosis. Even doctors seem to not know much about it- therefore many who receive the diagnosis are given the option of terminating the pregnancy. That bothers me really bad. There HAS to be a way to get more information out about ACC. Expectant moms should be able to be fully educated about the diagnosis. This is really tugging at my heart, and I feel a need to help with this cause but I'm not really sure how to do that... I mean, people are being told to terminate their babies when the doctors REALLY don't know. Look at Anderson- we were told when he was 5 or 6 days old that he would have severe problems and be extremely delayed. We were told to file for him to be on disability. ....Now I know that he is only 7 months old, but look at all he is able to do! Cognitively he has scored 2 months ahead. He is hitting most of his milestones early or on time. In fact, other than rolling over, he hasn't missed a milestone yet. I know he still has a long journey, but he is proof that God still works miracles and that the DOCTORS DON'T KNOW.

Sorry for getting on my soapbox...just something I am really concerned about right now.

Anyway, I will update later this week about all of our appointments and our PT eval. Hope everyone has a wonderful week! :)

It's the Little Things...

The Spears family had a wonderful Christmas. We were surrounded by family for 3 days straight. We got lots of nice gifts, ate way too much good food, and made a lot of memories. I know that many times family gatherings can sometimes be stressful, annoying, and just not the top on the list of things you want to do- But this year, I realized how truly thankful I am to have such a big family that lives so close. Jamie and I are blessed to have both sides of our families within less than an hour of our house. They love and care for all 3 of our children just as much as we do. I could call on any single one of them in a moments notice and they would drop everything to help however was needed. You know, I think I have taken this for granted. I guess I always thought this is just how it was and will be. But then I realized that there are people who have lost their parents, were only children, or who live far away from family- and I don't know how they do it. Our families are truly a blessing to us and we couldn't make it without their love and support.

Anderson seems to have finally recovered from his recent surgery. I really pray that this shunt works and does not get infected because I am not sure if I can watch him go through that again anytime soon. Would you mind to continue to pray for Anderson and, specifically, for the success of this shunt surgery? Thanks. We had a little scare last night with a fever that hit the "magical" number. We called the neurosurgeon and he gave it 2 hours to come down on its own before we had to load up and head to the ER...praise the Lord it slowly lowered itself back down through the night. Anderson does have a really bad cold, though. He doesn't feel good at all, but we can deal with a cold- just not an infected shunt this soon after surgery.

Speaking of surgery, we are absolutely AMAZED at the progress Anderson has made now that he has a shunt that is fully functioning. About 2 weeks before his surgery, we began to notice some things that started to worry us. We felt like he was beginning to really fall behind developmentally. We noticed that he had quit doing things that he had already been doing. One of the most noticeable things was that he had almost completely quit using his left arm/hand. He could move it, but he wouldn't reach for anything with it, hold on to anything with it, or even grip an object tightly with it. His eyes seemed to be getting smaller in size and just weren't bright like normal. His coordination seemed to really be off, and simple things like picking up an object -he just quit doing.

So, in the last week Anderson has blossomed! He is doing all sorts of new (and old) things. The funny thing is that to most people, these things would be so little, they may go unnoticed. I can assure you we wouldn't have noticed these with either of our girls. They aren't BIG milestones, but for Anderson, they are milestones. And we celebrate each little step just like it's a BIG one.

For example, when he would sit in his Bumbo, his arms would be straight out at his sides, or they would just hang down. He would not bring his hands together to touch each other at his midline. This movement requires both sides of his brain to communicate with each other ( remember that is the job of the corpus callosum?) . Well, after this surgery, Anderson is using both of his hands to do all kinds of things- he even brings them together. Last night at supper, he sat with his hands folded together almost like he was praying. He also can now transfer an object from his left hand to his right hand, which is a big deal. Another thing he can now do is hold an object in each hand at the same. For example, if he is holding something in his left hand and I offer him another toy with his right hand, he used to drop the object in his left hand before he would grab the toy with his right. Now, he keeps hanging on and holds both in each hand.

We are amazed at his physical progress just since he recovered from the surgery. Verbally, he has now started with consonant babble sounds and proudly says "DADA" all the time. I don't even care that he didn't say MAMA first (or has said it at all yet). I am just so proud of this verbal milestone for him.

The brain is an unbelieveable organ. They say that if the pathway isn't there that it needs, it figures out a different route- kind of like a detour- or it creates its own, new pathway. Anderson's corpus callosum is not there- there is no question about it, but his little brain is working hard to find ways to do everything he needs to do. Just another reminder of how awesome God is, and what great detail he put into creating the human body. Anderson's brain is remarkable, but it doesn't get all the credit. The credit and glory all go to God. He is hearing all of our prayers (if you are a reader, your prayers are included in that "our"), and he is answering them. We couldn't be more thankful and proud of our little guy. He is a trooper.

We did get a new video camera for Christmas. It's digital ( I guess they all are now) and as soon as I figure out how to add video on here, I would love to show you Anderson in action with some of his new tricks. I will try to figure that out soon.

Until then, we will continue celebrating each little milestone as it comes along...because sometimes the best things in life....are the little things.

Being reminded

Lots of emotions are going on inside me right now: thankful, curious, worry, exhaustion, delight, happiness, and frustration all at the same time.

Anderson finally appears to really be on the road to recovery from his surgery. I know the last post sounded like he was fine right from the beginning, but to back up just a little...the day after surgery was fabulous. He seemed to not be in much pain and was back to his smiling little self. Then Thursday (2 days post-op) was awful. Just by looking in his eyes you could tell he didn't feel well. He cried every time I moved him like I was hurting him, but he didn't want to be laid down. He wanted to be held, so I held him. His soft spot became full just like before surgery, so there were concerns that this shunt had already decided it didn't want to work. And that night he started with a fever. It got to 100.7 even with all of the Tylenol he was on-but we weren't to call the doctor until it got to 101.5, so I was on fever watch all night.

On Friday, his fever went away without ever getting any closer to the "magic" number. However, he still was not himself. He cried a lot, wasn't eating really good, and just wanted to be held and not move. He wasn't smiling much and just looked miserable. It is absolutely heart wrenching as a parent to see your baby in so much pain and discomfort and know there is nothing you can do to take that pain away. In fact, I would say that this experience has left Jamie and I both emotionally exhausted.

Saturday was a little better. He still didn't want to move around a lot, but he did start smiling more and crying less. He acted more like himself. We were so thankful for the improvement.

Sunday was like a roller coaster. One minute he was happy, smiling, and giggling, and not 5 minutes later he was screaming his head off and we couldn't get him calmed down.

Overall today was the best day we've had since the day right after surgery. He does still want to be held all day, but his demeanor is back to normal and not much crying (except when I put him down).

We are thankful that his surgery went well, we are thankful that he is finally recovering from it, and we are anxious to see the changes we will see now that his new shunt is functioning properly.

With Christmas approaching, we are definitely counting our blessings. We know we have been blessed beyond measure with all of our children, but especially Anderson. He truly is a miracle baby.

However, this most recent surgery has also brought some worry and fear to the forefront of my mind. I worry about his development. I worry about how long we have until this shunt quits working. I fear that he will not hit milestones both physically and verbally. I fear that I will let myself be overwhelmed by comparing him to typical children his age. I know that he is capable of everything a typical child can do, but what I must remind myself is that his brain is different. He is going to move at his own pace and accomplish things in his own time. I know that in the grand scheme of things it does not matter at what age he rolled over, crawled, walked, spoke his first words, etc. I don't think any of those questions are on job applications. I fear that I will miss out on the little things by being so concerned with the bigger things.

I don't want to be this way. I want to be the strong, courageous person with faith that can move a mountain. Most of the time I do feel strong. I do feel God's presence and know that he is in control and knows what lies ahead for our family. But sometimes, I allow myself to lose focus on God and focus on life. And when I focus on life, everything starts to fall apart because I know that this is bigger than I can do on my own. So there are times that I must remind myself that God is in charge. And I have to tell myself that He is the healer and he knows exactly what is best for all of us. And I must refocus everything I have on him.

Sometimes he reminds me of this in subtle ways, other times he nearly shouts at me. Tonight I had been reading a blog written by a mother whose son has ACC like Anderson. There are a few differences in their diagnoses but also some very similar conditions. This boy is about 14 months older than Anderson, and as I read their blog, I found myself questioning if Anderson was headed in the same direction with the same challenges. I decided to put the computer away for the night, and catch up on some reading. I was a few days behind in the book Jesus Calling by Sarah Young. (If you don't have this book, I highly recommend it!) Anyway, when I got to the reading for today, this is what I found:

My plan for your life is unfolding before you. Sometimes the road you are traveling seems blocked, or it opens up so painfully slowly that you must hold yourself back. Then, when time is right, the way before you suddenly clears- through no effort of your own.....
....Do not fear your weakness, for it is the stage on which My Power and Glory perform most brilliantly. As you persevere along the path I have prepared for you, depending on My strength to sustain you, expect to see miracles- and you will. Miracles are not always visible to the naked eye, but those who live by faith can see them clearly. Living by faith, rather than sight, enables you to see My Glory.

That couldn't have come at a better time. I must remind myself to live by Faith- not by sight. I have to remind myself that God's plan for my life will be revealed in it's own time. I must sit back and relax, enjoy the ride, and not miss one single second by worrying.

Shunt Revision

Anderson had his first shunt revision today. We were scheduled for surgery at 12pm but he didn't get taken back to surgery until about 1:50. He was such a good baby though considering he hadn't eaten at that point in about 18 hours.

When they went in to check things out, they discovered that the whole thing was not working properly so they had to replace the entire shunt system. Surgery took about 45 minutes. He ended up coming out with 2 incisions again this time, rather than just the 1 that they had told us he would have. What they didn't warn us about was the size of the incision on his head. Apparently when they go in for a revision, they have to expose the entire shunt and tubing, so our less than 2 inch incision is now about a 5-6 inch incision.

When we first saw him in the recovery room he was in A LOT of pain. It took them about 15 minutes or so to get his pain under control.

We are now in a regular room and he is currently resting peacefully. We are praying for him to sleep and be as much pain-free as possible tonight. They are still telling us that we will be discharged in the morning. Hoping that we get home before the ice storm hits that is coming.

Thank you for all of the prayers and messages today. Like I've said before, those are what keep us positive and going on days like today. We are so thankful that the surgery went well and hope that his recovery will go smoothly. We have been told that there is enough tubing with his shunt that it can last him until he is an adult- unless it quits working again. So we will continue praying that this shunt will work properly and last more than 6 months.

Surgery

Anderson will be having surgery on Tuesday. Right now it is set for 12:00pm. There is a possibility that it could be moved up, but we won't know for sure until sometime tomorrow. His shunt is not malfunctioned, but Dr. Tulipan says it is not fuctioning adequately. So we will have a shunt revision. To be honest, I don't really know what all that entails. I know we will have all of the details before they take him to surgery, but we don't know everything right now.

Just trying to finish up our Christmas shopping and make plans for the girls for the next few days. Thanks to everyone who has offered to help out. It's times like this that it is so nice to have such a big family and lots of friends nearby.

We will post on Tuesday to let you know how the surgery goes. Until then....lots to get done!

Finally

We finally got some news today. Thanks to our wonderful Pediatrician here in Columbia who called Vandy and got some information. Then I had to call back this afternoon because no one from Vandy had called ME to let me know what was going on. When someone finally called, I didn't get an apology or anything. They just acted like it was no big deal...they will soon figure out that to THIS momma it IS a big deal.

Tomorrow Anderson will be having a CT of both his skull/bones and his brain. This should take care of the images for his neurosurgeon regarding the shunt as well as the images for the plastic surgeon who will fit him with his helmet in January.

That's about all we know right now. Hoping it doesn't take forever to get these results. We would like to enjoy our Christmas without the worry of Anderson's shunt malfunctioning. Will post more news as we have it.

The Doctor Admits...

****Update #2: Still no call today...unless you consider the fact that the secretary called to tell me someone WAS going to call me, but couldn't tell me when. Really? Yes I am frustrated, but I did not act ugly on the phone- I figure it's not the secretary's fault...plus, she called while I was at school and I had 23 pairs of 10 year old eyes watching (and listening to) everything I said...) Maybe I will have news tomorrow for a separate post...don't hold your breath. :)


UPDATE: The doctor never called today to let us know if we are having surgery or not. I even called twice and left a message- no one ever returned my call. So....I am frustrated and we still don't have any answers. Praying tonight for some answers tomorrow (and that I can keep my cool when I finally talk to someone.)

original post:

This past week, Anderson went to Vanderbilt for his 6 month developmental screening. All babies who spend time in the NICU when they are born, go through these screenings. As I have posted before, it is really fun to sit back and watch each time a new doctor/nurse comes in to examine Anderson. You see, all they know of Anderson is his medical chart and all of the MRI images that show a large cyst on the right side of his brain, covering much brain tissue. With all of their medical experience, they immediately have a picture in their minds of what this "Anderson" will look like and be able (or not able) to do. In the past, all we've gotten is the remarks "He looks great." But this past week, a doctor actually went a little farther and recognized that there was something bigger going on. She did the screening, scored the screening, and as she was discussing the results with Jamie and me, she stopped and said, "You both have a lot to be thankful for. After reading his chart and viewing all of his scans, he should not be able to do half of what he is doing." Jamie and I both smiled and told her that he is an answer to many prayers. She smiled and agreed with us. It was a wonderful moment- for someone in the medical field to actually stop and admit that there is more going on in Anderson's life than just his medical chart can show.

The screenings showed that verbal and motor skills are equal to that of a 4-5 month old. So considering he JUST turned 6 months on Dec. 1 we were pleased with that. We do have some things that we will continue to work on with him at home, but overall he is doing great. Get this- his cognitive level came out equal to an 8 month old! Can you believe it? He is actually advanced in his cognitive skills! We knew he was doing great, but it means so much more to have a doctor agree!

There was some concern that the circumference of his head has increased more than they would like it to, so we ended up having an ultra sound of his brain while we were there. The bad news is that the cyst has grown- which it shouldn't do with his shunt in place. So there is question whether his shunt is working properly or not. It hasn't completely malfunctioned, but may not be draining the fluid out of the cyst like it should. His neurosurgeon was out of town, so we are supposed to find out this coming Monday whether we are going back into surgery to have our shunt revised. We hope not, but if he needs it done, then we know it won't be a huge deal. I will be sure to post on Monday whether we are having surgery or not.

The other concern is the shape of his head. Of course it matches Karlie's head at that age- BIG. But it is also flat on the back and starting to bulge some on the sides, so more than likely we are going to end up with a skull-shaping helmet. I hate this for him because I know how uncomfortable this must be, but we are willing to do whatever it takes to correct any problems for him that we can. Our appointment with the plastic surgeon who will fit his helmet is in January.

So overall Anderson is still doing great. He is the sweetest, happiest baby I have ever been around. There is nothing better than picking him up from the babysitter and having him grab my cheeks and give me a big giant kiss. He absolutely adores his big sisters, and I have to admit, LOVES his daddy maybe even moreso than me. He has been such a blessing to our family. I can't imagine life without him.

Just like we told the doctor, we will continue being thankful for everything he is able to do, and while we understand that there may be some bumps in the road in the future, we will deal with those as they arrive, but for now, we will just enjoy and celebrate the wonderful things he is able to do.

Thank you to those of you who continue to pray for Anderson and our family. We appreciate those prayers more than you will ever know, and they are being answered. God has shown himself in our lives and I know he has a special plan for Anderson. This sweet baby has already blessed so many people in his 6 months of life. I can't wait to see what else is in store for him.

He can and He will...If you let Him

Tonight as I was lying down to go to sleep, I was talking to God and thanking him for all of the blessings in my life. As I started thinking about all of these blessings, I realized how much God has been by our side and taken care of our family- especially with Anderson. Don't get me wrong, I have known what a blessing he is, but I think I got caught up in the hustle and bustle of everyday life and allowed myself to not be as much in awe and thankfulness as I should be. The more I thought about it, the more awake I became. I could not sleep. I decided that I needed to remind myself of the entire journey that we have been on with Anderson- just to remember what a blessing he is and to remind myself of how God was with us throughout the entire journey.

One of the things I did was went back to a podcast of a sermon at our church back in April. It was the first week in a study we were doing on living a Fearless life. During the sermon, our preacher shared one of the posts from the blog that Jamie had written. It described the events of the 20 week ultrasound with openness and emotion. As I listened to it tonight, I sat and cried. I began to remember all of those feelings of uncertainty. I remembered the events and feelings that day in the doctor's office. I remembered how no matter what obstacle we faced, God gave us the courage, strength, and ability to face all of them. Those of you who know Jamie and me know that we would not be described as strong people. If you had told either of us that we would face something like that, it would have scared us to death. And if you had told us we would have the faith and strength to face it without fear and without letting the unknown completely take over our everyday thoughts, we wouldn't have belived you. But what we know now, is that we still aren't strong. God is the one who gave us the ability to make it through what we went through. There are many instances from that first visit until the present where God has shown his presence in our lives.

We had no idea what to expect with Anderson. Even after his birth we had doctors telling us that we would have major delays. I know that we are still on the beginning end of his journey, but we could not be happier that so far God has proved the doctors wrong. Anderson is the happiest baby with the sweetest personality. During our last ER visit, it was a little comical to sit back and watch the doctors (especially the neurology folks) come in to see him after looking over his medical records. Because they had a picture in their head after reading his medical records, and when they would walk into the room- the picture they previous;y had didn't match what they saw. You could see it on their faces. They were amazed. I like to think that God gets a chuckle or two as he watches, too. Because medically, with Anderson missing his Corpus Callosum, and with a large cyst in his brain full of fluid, he should already be showing signs of developmental delays- but he's not. And we give God all the praise and glory for that.

I think God has big plans for Anderson. I think when he gets bigger he is going to have quite a story/testimony to share with others. I think his future looks bright and the opportunities are endless. But no matter what he does, he will be living proof of how God works in our lives.

I know there are some of you who read this blog who may be going through struggles or storms of your own. I know some of you may be going through something that has overtaken your mind with fear and worry. Maybe you are so afraid of what's going to happen, that you are sick, you feel hopeless, and you feel like you can't face another day. I think God wants me to do more than just be thankful and share updates of how Anderson is doing. I think God expects me to share Him with all of you. I think I now have a responsibility to help others who are struggling. I want you to know something I have learned. No matter what is going on, no matter what storm you are in or what obstacle you are facing, you can give it to God. Give it to him- quit carrying it around yourself. He is in control anyway, so quit trying to take the steering wheel away from him, and let him have it. Give it to him, let him carry it, trust him, and see what happens.

The situation with Anderson is not the only fear that I handed over to God. I have been through other struggles where I had to "Let go." I am learning to let go and let God-no matter how big or how small the storm seems. It's not easy. But every time I have given something to him, he has given me the strength and courage to face it and come out on the other side. Now, please realize that by giving it to him it will not necessarily make it go away. It doesn't mean that it will turn out the way you want it to. It does mean that you acknowledge that God is in control of the situation and that you trust him. You have to know that no matter what he will take care of us- he will give us what we need.

He can help you, and He will...IF you let Him.

Growing...

Everyone around here seems to be growing up too fast! Kinsley is in 1st grade and acting more mature everyday. Kindergarten was so good for her- she is slowly beginning to come out of her shell. I already know that we are in trouble when she gets older- trust me, I tried to take her shopping and already we are having to compromise on what kind of clothes she can wear! I better start praying about that now.

Karlie celebrated her 4th birthday today. She informed me that she feels much bigger and thinks being 4 is the best! She seems to be pretty mature for her age, so honestly she already seems older than 4. She has had a great birthday- one more party next weekend will finish up the celebrations. She loves her preschool this year because she is in the older class. Most of the kids in her class will go to Kindergarten next year, but because of her birthday, she will go through the oldest class twice. She is already getting a love for learning. She loves writing her name, practicing writing letters, and is already wanting to know how to spell words. She and Kinsley spend a lot of time "playing school" where Kinsley is always the (bossy) teacher and Karlie is the eager student. It is quite comical to listen to because Kinsley doesn't miss anything her teacher at school says, so she is eager to come home and repeat it to her sister.

Anderson went for his 4 month check up today, both with his neurosurgeon and his pediatrician. He is growing up so quickly! From month to month his development seems to be in fast forward. I don't know if I just took it for granted with the girls or what, but Jamie and I are amazed every day at the new skills he develops- we don't remember noticing every new thing the girls did at this age. I guess we are noticing his because we are constantly watching for any delays or difficulties that the doctors have told us about...we're still waiting. So far he is doing AWESOME. His pediatrician couldn't believe how good he looked. She laughed at his sweet personality. He smiles ALL the time, laughs, squeals, and his new trick- he blows raspberries- and thinks its hilarious.

Jamie and I feel like we have been blessed greatly with our three children. We know that in the past we took the health and development of our girls for granted- thanks to Anderson we no longer take ANYTHING for granted. Life is too short to not enjoy every single minute and be thankful for those minutes. They go by so quickly...better savor each of them!

Here are a few more pics for you to enjoy...

The Good News....

So as many of you know, Monday night/Tuesday morning were very frustrating and trying. We were back at the hospital with a shunt that was swollen from the head all the way to the abdomen. When I say swollen, I don't mean just a little bit- I mean SWOLLEN. We didn't get a lot of answers, we felt like we were on a roller coaster every time a doctor would come in and say "you're going home" then 10 minutes later we hear "he may have meningitis" and then in yet another 15 -20 minutes "no he doesn't...you're going home." However, this frustrating 13 hours in the hospital ER did lead to some very positive news...news that we couldn't have been happier to see.

For those of you who followed the blog right after Anderson was born, you probably remember this post- the one from the Sunday that we had a really bad day. The post about the doctor who told us that we needed to go ahead and file for disability for our less than a week old son. The post that described how that doctor showed us the films from the 1st MRI and pointed out all of the fluid and lack of brain tissue. The post where the doctor told us a cyst grew in place of the right side of Anderson's brain...remember?

You also may remember how the last time we went to see our neurosurgeon I asked about having another MRI performed now that Anderson has his shunt and the cyst should be smaller- you know, just to see what is there. If you read this post, you remember that we were told they MIGHT do a repeat MRI but we would have to wait until Anderson is at least 6 months old. We were also told at that visit that "Whatever is going on up there is out of our control- it is up to a higher power."

It certainly is. Our little trip to the ER this week resulted in Anderson having a series of x-rays, 3 shunt taps to draw fluid, and an MRI. Yes, we got to have an MRI. And when one of the neurosurgeons came in to see us, he kept remarking at how good the MRI looked and how impressed he was.

"I want to see it!" I said.

He kind of turned slowly toward me and gave me a look like "you won't know what you're looking for. Why do you want to see it?"

"I'm not leaving here until I see it. I want to see the films. I saw the films from his first MRI and I know what I'm looking for...I want to see now that the cyst is smaller- what is there? Empty space? Brain tissue? What?"

He smiled. He said the MRI looks great- he went on to tell me "Oh, there's brain tissue there alright." And he went to find a computer.

When he led Jamie and me to the computer, he had pulled up one picture from the first MRI and one from Tuesday's. I didn't need a medical degree or an explanation from a doctor. ..I saw what Jamie and I already knew was there.....gray matter- which represents BRAIN tissue.

Anderson is NOT missing most of the right side of his brain like we had originally been told. PRAISE GOD! I looked at the doctor and told him that the MRI pictures were nothing but ANSWERED PRAYERS. I told him he had no idea how many people out there have been praying for this baby. He didn't say anything in return- just smiled.

So even though the night/day was frustrating, we came home from the hospital full of THANKSGIVING and PRAISE for more answered prayers.

We have said from the beginning that we REFUSE to give up. We REFUSE to label Anderson. And we REFUSE to lose faith. God is working all around us every single day. Thank you to all of our friends and family who believe in the power of prayer and take time to remember us in those prayers. Thank you for not giving up, thank you for all of your support when we need it most. We are truly blessed in every way.

Growing...

Things are busy around here. So I've been told that even if there's no time to write, I must keep pictures updated. So...here a few new pics.

"How can I get this in my mouth?"

Always cheesing...such a happy baby.

Cheering on the VOLS with daddy! Go big orange!

Humbled at the Gas Pump

One of Jamie's sisters came home this weekend and stopped by and got all of our children and took them with her for the night (thank you Aunt CaCa!). Since we were childless for a night, Jamie and I decided to go out to eat. As soon as we got in my car to leave, we heard that all-to-familiar sound of the LOW FUEL warning. So we stopped at a gas station close to our house to fill up. I went in to pay, while Jamie took the duty of pumping.

While he was pumping, another lady pulled up on the other side of the pump. She was having trouble getting the pump to take her debit card, so she finally stuck her head around and asked Jamie why in the world it was asking her for a zip code when she just wanted to use her card? Jamie helped her get everything fixed and working, and she laughed and said "Well, I'm from Centerville and I'm not used to all of this technology." (For all my Centerville friends, she was only joking...she is a very educated lady who had just never been asked for her zip code to pump gas before.)

Jamie said, "Oh really? My wife teaches in Centerville."
"Really? What's her name?"

He tells her my name and then they begin naming different teachers that they both know- making a few connections along the way.

She makes a comment about me driving from Columbia to Centerville everyday and says its not too bad, she's been driving from Centerville to Columbia for 20+ years. So Jamie asks where she works, and they are able to make some more connections of people they both know.

It's about at this point that Jamie notices the lady's face light up...
"Did you and your wife just have a baby?" she asks.
"Yes. We had a little boy born in June."

She smiles and says, "I've been praying for you. You are on my prayer list and I have prayed for you and your family every day."

WOW.

How humbling it is to know that there are people out there who we don't even know who have been praying for us. What a wonderful experience to stop to get gas, help someone on the other side having trouble, and find out she is one of those people who have been praying.

Not only has she been praying, she also has raised children born with a disability. She has walked in our shoes. She is much farther ahead in her journey than we are in ours...and what an inspiration she was to us.

Thank you Lord for confusing this sweet lady at the gas pump so we could have the opportunity to meet her.

Doctors, Development, and School

I apologize that it's been so long since I've updated. Things around here are a little busy. :)

Let's see...where should I start? Oh yes, updates from the neurologist. Last Monday Anderson went back to see the neurosurgeon. We were thinking they would check lots of different things and tell us how wonderfully he is doing. Wrong. We waited in the waiting room for 2 hours, then when we finally got back to the room, the doctor came in and looked at his shunt- said the incision and the shunt looked great...do we have any quesions. Yes- why did we have to wait 2 hours for you to spend 30 seconds with us? I didn't really ask that, but I did ask a few questions. (Just to make myself feel better about the amount of time we were in the room! HA)

One of the questions that I asked was about a follow-up MRI. I asked when we would do one to see just how much the right side of Anderson's brain has developed now that the fluid is gone and we should be able to see more. The doctor tells me that he wasn't really planning on doing another MRI. His words were, "All we have control over is the shunt, and the fluid. Anything else going on in there is up to God and is nothing we can control. However, if you want an MRI so that you will know what's going on, I would at least like to wait until he is 6 months old so that we can get better pictures." Jamie and I both know that God is in control- He has already proven that by how well Anderson is doing. However, as a teacher, I think I would like to know what is there so that I know as Anderson grows how hard I can push him- I know he can always exceed expectations, but I think it's also good to know what all we are working with. What do you think? I'd love to hear some other opinions...

That same day, a lady from TEIS (TN Early Intervention) came to the house to go over Anderson's developmental screening that they did when he was 1 month old. Basically, he does NOT qualify for their services based on developmental delays- because right now he is doing what he should be doing- no delays!!! We were thrilled to hear this. The best thing is that he can still receive their services based solely on his medical diagnosis of Agenesis of the Corpus Callosum and Hydrocephalus- so once a month, an early intervention teacher will come to our house and she will give us ideas of how to work with Anderson to get him to meet different milestones, both physical, cognitive, social, and adaptive. We are really looking forward to this- having things that we can do with him every day to make sure he does not fall behind on milestones is exciting for us- we want to be proactive, rather than realize he is behind and try to play catch-up.

Also last week, Anderson finally had his circumcision done. It was not a good day, there were some complications. We go back in a month to see if the procedure got the desired result- if it didn't, then Anderson will be scheduled to have it fixed surgically when he is about 8 months old. So while it seems funny, we are praying that "things down under" are like they should be so that he does not have to be put to sleep to "fix" anything.

The last update is more about me than it is Anderson. With the school year getting ready to begin, lots of people want to know if I am returning to work. It's really funny how some people ask- "You AREN'T going back to work, ARE you?"

I realize that in sharing Anderson's story and being completely open and honest, many people feel like they have become a part of our story- and I love that, because you have. If you have followed our story and prayed for us, then you are a really big part of our story. I also realize that if I put information out there, I have to be willing to get opinions from anyoe who reads this blog...good or bad. And that's okay because I have prepared myself for those.

The answer is YES I am returing to school. I am going back August 2. I know that some of you are cringing as you read that- but that's okay because I am confident in my decision to go back to work. Jamie and I prayed a lot about it. At one point in the hospital, I remember looking at Jamie and telling him there was no way I could go back to work. However, Anderson is doing so great right now. He is not going to a daycare- he will be watched by the same lady who kept both of the girls from the time they were 8 weeks old. She isn't a babysitter- she is like family. The girls think she is part of our family. She will be keeping Anderson and Karlie at her house, and when Karlie is at preschool 2 days a week then she will have Anderson all by himself. I realize that in a perfect world every mother would be able to stay home with all of her children until they start school, but that isn't how it always works out. And if I can't be home with them, then at least I know that they are with someone who loves them just as much as I do and takes wonderful care of them. I don't know what we would do without her.

So I realize this is really long- oops. I need to post updates more often so they can be shorter. Sorry. Thanks for reading to the end! Please keep praying for Anderson and that he will continue to do so good. Pray for me as I return to work, as I know things around here will get a little crazy and chaotic for the first few weeks until we get settled into a routine.

Getting Hefty

Anderson went back to his pediatrician for his 1 month check-up today. He has gained 3 pounds since leaving the hospital and has grown 2 inches! He is now up to 10 pounds 6.5 ounces and is 22.25 inches long.

She said he looks great and she is very pleased with how he is doing. His incisions are pretty much healed so we can finally quit doing sponge baths and GET IN A TUB! WooHoo! So, we will finally see whether he is going to like bathtime or not (just when we had made it through a sponge bath with no crying!).

He did have to get a shot today- first time he had been poked since the day we were discharged from the hospital- let's just say he still isn't very fond of needles!

We go next Monday to the neurosurgeon. Looking forward to that visit. Anxious for them to see all of the things he is doing...wondering what they will think about it, and when they will schedule a follow up MRI to see what's going on.

I go back to the dr tomorrow for my 6 week check-up. Looking forward to getting released to get some exercise! Hoping the incision is healed right and that Doogie Howser knew what he was doing. Ha!

A Few Funnies, Part 2

Anderson was 5 days old before his 2 big sisters got to see and hold him. But on the Sunday that we were in the NICU room where we could stay in his room with him, my mom brought the girls up to spend some time with us.

The entire day was both funny and exhausting all at the same time. The girls had already waited 9 months for their brother...now 5 more days- they were tired of waiting. Let's just say they couldn't get enough of him. All of the cords and monitors didn't bother them at all- they were going to hold their baby brother- and weren't planning on sharing him with any one else. Protective doesn't even come close to describing how they felt about him. We would convince Kinsley to let someone else hold him, and in 2 minutes she would inform them that it was her turn again.

The best part came. however, when Karlie was holding him.

She was "rocking" him, rubbing on him, and wouldn't take her eyes off of him. She would ask a lot of questions about him, like she was studying him very intently. While she was holding him, he got hungry. So like all babies do, he started to put his hands up by his mouth.

So she asked, "What is he doing?"

Jamie told her, "He is hungry. He is trying to eat his hands."

Her eyes got as wide as saucers, she thought for a minute, and then said, "Well, then somebody better run downstairs to McDonalds and get him something to eat, FAST!"

A Few Funnies, Part 1

Now that things have calmed down a little and Anderson is doing great, I just had to share a few stories from our experience at the hospital that are quite comical.

We will start today with Part 1- The Staples

So, since I had a C-section, I stayed in the hospital for 3 days after delivery. On the day of discharge, the doctors decided that my staples were NOT ready to come out. So, they told me that since the baby was still in the hospital, to come back to Labor and Delivery in 3 days and have my staples removed. Easy enough, right?


Once Anderson had been moved to the Children's Hospital on Monday afternoon, I decided I better go get them out. I walk back over to the regular hospital and go to Labor and Delivery and explain what I need done. The girl looks at me like I have 3 horns growing out of my head and says "We don't do that here."

"Okay...then where do you suggest I go to get this done?"

"Go back over to the nurses station where you recovered and tell them what you need."

I walk over there, tell the same story, while this time about 5 nurses look at me like I'm crazy. They tell me that will call the doctor that discharged me and see what I need to do. Could I please go sit in the waiting room? Sure. I haven't done enough sitting and waiting yet. I would LOVE to do that.

So I sit...for about 30 minutes. While I'm sitting there I remember that these directions for my staples to be removed are actually written in my discharge orders...so I walk back to the nurses desk and tell them that if they will just pull up my orders in the computer they will see that I am not out of my mind. The nurse looks at me and says, " Oh yeah...I forgot you were in the waiting room. I got busy doing something else. I will call for someone to come get those out for you."

I ask, "Do you know how long it will be? My baby has just been moved over to Children's to get ready for surgery tomorrow and I'd rather not spend all night over here waiting to get these taken out..."

She now shows some signs of compassion and picks up the phone and says it will only be a minute. But sends me back to the waiting room.

About 10 minutes later, a nurse comes to get me. We walk back up the hallway, and as we come around the corner she points to the person who has been given the task of removing the staples...I have 2 words for you:

Doogie Howser

Remember that show? Where there is a 16 year old doctor? Well, when she points to the appointed person, I see a 26 year old male standing there.

Well, this is a little uncomfortable...(he has the same look on his face.)

But I decide that these staples MUST come out, so I need to put my comfort aside and let this boy, I mean guy, do his job.

So we walk to a small room that is only big enough for an exam table and a few cabinets full of medical supplies. I decide to try to have conversation to ease the silent tension that is filling the room as he begins to remove the staples.

"So, are you a nurse?"

"No. I'm a medical student." (greeeeaaaat!)

"Really? What year are you?"

"I'm in my third year."

"Going into Obstetrics?"

"No...(are you ready for this?)...Opthamology."

"Opthamology? Really? Like an eye doctor? So what brings you over here to the OB/GYN floor?"

"During your 3rd year of medical school, you have to rotate through many different specialties. I am doing OB right now."

okay, so maybe he's been doing this for a month or so and at least has a clue what he's doing.....

He continues, "I got to see my first C-section this morning. Man, I had no idea that they keep you guys awake for those things. It was pretty awesome."

or maybe he doesn't...

Don't worry...this gets even better.

He gets to the last 3 staples and says, "I'm not sure if these are ready to come out or not." Then he shrugs his shoulders, and says, "Ah, we'll go ahead and take them out and just put some steri-strips on them."

Yeah, no biggie, right? Just my insides might fall out or I may get a serious infection.

So he takes them out. And then says, "Oooh. They are oozing pretty good. Better hold some pressure on this area for awhile." (Awkward? Noooooooo....)

Finally he is ready to cut the steri-strips to put on there, only he can't find any scissors in the room. So he tells me he will be right back, he's going to find some- and he leaves.

I hear him knock like all doctors do before entering a room. This knock is followed by the door handle jiggling, and him pushing against the door- that won't open. Yes, my friends, Doogie Howser has just locked himself out of the room and does not have the key.

I hear other nurses in the hallway cackling as he asks, "Does this door lock automatically?"

Yes, genius. It does.

I'm laying on the exam table wondering if I should get up and open the door for him, but decide to just lay there. So he goes back to the nurses desk to ask someone for a key to let him back in.

When he comes back in, he is even more embarrassed and things are MUCH more awkward. He puts the steri-strips on in record time and sends me on my way.

Wow. Did that just happen? Yes, it did. Jamie seemed to think it was hilarious when I made it back to Anderson's room...at the time, I did NOT think it was that funny. But now that I think back, I realize it actually is quite comical. Seriously, none of this was exaggerated or made up...that is EXACTLY how it happened.

Only me...Only me.

More answered prayers

Our pediatrician called today to tell us that she had gotten the results of Anderson's chromosome testing. Those of you who have been praying and following this story won't be surprised to hear...

it was all NORMAL!!!

You see, when a baby is born without a Corpus Callosum, there usually are other disorders, abnormalities, and problems associated with it. Chromosomal abnormalities or deletions can be the cause of the CC missing, or can show that other things are involved- and with the chromosome problems, the symptoms are on the more severe end of the spectrum. This is why they did the test on Anderson when he was born- the chromosome test can give more information as to what is going on-before symptoms arise. BUT...since his is normal and nothing showed up out of the ordinary, this confirms that there are no other disorders to go along with it.

In fact, as I read back over his medical notes from Vanderbilt, I realized that even though they have diagnosed him with ACC (Agenesis of the CC), they aren't sure themselves whether it is there or not...the large cyst made it difficult for many things to be seen, so they made the diagnosis based on the appearance of other things in his brain that tend to go along with ACC. So we really don't know what all is going on- what is there, what isn't there- and we probably won't know until they do another MRI...which hasn't even been scheduled.

For me, it doesn't really matter. He is doing so good right now and so far all of the information we are getting is so positive and reassuring. That's all that matters to me. All Jamie and I have ever wanted through this is for Anderson to be able to live a life with some type of "normalcy". Once he had his surgery and we were able to come home, he has not been any different than when the girls were babies. He eats, sleeps, dirties diapers, and when he is awake he is alert and takes it all in. He loves to be sung to, and when you talk to him he is already trying very hard to "talk back"...he hasn't really gotten any sound out yet, but boy does he try! He is a sweet baby who has already blessed our family tremendously and has shown God's power to many people. We are thankful for everything we have received so far, and continue to thank God for everything he has already done and will continue to do.

Doing Great

Anderson went back to his pediatrician this morning to recheck his weight. He is now up to 8lb 9 oz, which is 2 oz heavier than his original birth weight!! Yippee! Gaining weight is good for any baby, but it is especially so with Anderson- because feeding is actually a neurological activity. Many babies who have developmental issues neurologically cannot feed and have to be fed through a feeding tube. However, Anderson is doing great drinking his bottle and is continuing to gain weight each day. I am so thankful for this!

We also got other good news today at his visit- his doctor examined him and then looked at me and said "Honestly, Andrea. If I didn't know his story and couldn't see the scar on his head from his surgery, I would not know that there had been any concerns with his health. He looks great developmentally and is doing everything a "typical" 3 week old baby should be doing. He might just be God's little miracle baby."

You have no idea how wonderful it was to hear that. I knew that Jamie and I had not noticed anything different about him than our other girls as babies, but we also knew we weren't doctors and might be overlooking something. We are so thankful that Anderson is doing so well. We continue to pray daily for his development. We feel God has already blessed him and will continue to bless him. Thank you for helping us pray...God has already answered many prayers.

Could not ask for more

I thought I'd update with a few pics to show you how well Anderson is doing. Jamie and I feel blessed beyond measure, and we know that God is present and answering prayers every day. Anderson is already doing things that make us look at each other with amazement. We already feel that he is going to do way more than any of the doctors think he will do.

He is a good eater. His weight was up to 7lb 14 oz this past Monday, which was up 6 oz. from just the Friday before. We will go back next Monday just to be sure he is continuing to gain- hopefully he will be back up to his birth weight of 8lb 7oz.

He is a great sleeper! He sleeps anywhere from 3 to 3 1/2 hours at a time and 2 nights in a row he has gone 5 hours between feedings at night. I am loving this and hoping it doesn't change- unless it's for the better!

He HATES bath time! We are still having to do sponge baths because of his incisions from the surgery as well as the fact that stupid belly button still hasn't fallen off! That thing is annoying! He screams his way through his bath but as soon as I wrap him up and pick him up, he is perfectly calm and relaxed.

His big(gest) sister still thinks the world of him and stays pretty close to his side. The newness has worn off some, but both sisters still think he is pretty special.

Here are some pics from his surgery. The incision on his head is where the shunt and valve are placed. You can see where whoever shaved his hair for the surgery got a little "razor-happy". But the incision is about 3 cm long and at the base of his head where it meets his neck, you can see what looks like a knot- which is actually the valve piece of the shunt under his skin. Once he regrows his hair, you won't be able to see any of it. He also has an incision on his abdomen right above his belly button. This is where they cut to pull the shunt piping down into his abdomen to allow the fluid to drain.

It has been frustrating not being able to get him out, or to be able to have many visitors. We are anxious to be able to get him out so that all of you who have been praying for him can see him in person and be amazed at what he is already capable of doing. But we also understand the seriousness of getting an infected shunt, so we are following doctor's orders. Until then, I guess the pictures will have to do. Thanks again for the continued prayers and support. Things are going so well right now, we could not ask for more.

Settling In

Just wanted to do a quick update. Anderson is doing great. He seems to be getting adjusted to being home. The girls are so excited and very helpful (kind of). I'm wondering when the new will wear off because right now they can't get enough of him. They are in his face, trying to shove his passy in his mouth everytime he makes a little noise. Whew. He does seem to be taking it well so far and not getting bothered too badly. We'll see how long that lasts!

He went for his first visit with his Pediatrician today. Everything looks good right now. He hasn't gained weight yet, but they feel that the loss of fluid and the surgery are probably contributing to that. We will go back at the beginning of next week to see if he gains weight. He is eating really good, so hopefully when we go back his weight will be higher.

We are getting adjusted to having a new baby. So far it has gone well, but Jamie has to go back to work on Monday so we'll see how well I do next week...Wish me luck!

HOME!

Yes, you read that correctly...we are HOME. We had no idea that there was even a possibility of us going home today. But when the doctors made their rounds this morning at 11, it was decided that Anderson was doing so well, there wasn't anything they could do for him at the hospital that we couldn't do at home.

So we loaded up, got the paperwork, and headed home.

The doctors did ask that we be very careful about trying to ensure that his shunt doesn't get infected. An infection in a shunt is a pretty serious thing, so the doctors have asked that we do a lot of hand washing, hand sanitizing, and try to limit Anderson's exposure to a lot of visitors. They would like for us to try to keep him away from germs as much as possible. I know that you all understand and want what is best for him also.

So, we are going to get settled in. I am going to prop my swollen feet up and snuggle with the girls- who are excited to have their baby brother, momma, and daddy home. We thank you again for your prayers and support. We will continue to keep you posted of how Anderson is doing, but as for today God has answered all of our prayers and we are grateful beyond measure.