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.
Thursday, December 30, 2010
Monday, December 20, 2010
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.
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.
Tuesday, December 14, 2010
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 h
ave. 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.
ave. 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.
Sunday, December 12, 2010
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!
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!
Wednesday, December 8, 2010
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.
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.
Saturday, December 4, 2010
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.
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.
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