Emily got her ears pierced! She actually went through with it. It wasn't an easy feat for her, though. She has been talking about this for months. She has been telling me how much she has wanted her ears pierced. She has even been mad at me for not getting it done when she was a baby so it would have already been done by now and she wouldn't have to worry about it. All of her friends have it done. She loves looking at all of the pretty jewelry in the store and she just loves the earrings. So the day was finally here. The decision was made. She told me that she was ready to do it. I let her know that I would even use the Emla cream on her ears so she wouldn't be able to feel it. That is the prescription numbing cream that we use on the kids for all of their medical procedures. I explained to her exactly how the process was going to go because I believe in total honesty with any and all procedures. And I also told her that if she got there and decided that she didn't want to do it then she didn't have to.
Well, we got to Claire's in the mall and Emily's anxiety level was through the roof. She was sooooo nervous. She was already telling me that she was scared to do it and was telling me no before we even started looking at earrings. I knew it was just her nerves talking and I also knew how much she was wanting to do it. I convinced her to at least look at the earrings. Then the girl working there came over and talked to Emily and even began to calm her nerves. She was so good with her. Emily said she wanted to think about it a minute and then she finally said okay, she'd do it. I asked her if she was totally sure. She said yes because she was really wanting it done. I called the girl over and I had already talked to her about making sure that they did both ears at one time. As they got Emily all prepped and ready, her nerves got the best of her again and she started to panic. The girls there were so patient with her. It was at that moment that I knew that I had to make a hard decision as a mom. I could either let Emily back out because of her nerves as she was starting to beg me to, or I could quickly hold her down and let the girls do the piercing like I knew Emily really wanted. I held her down in my lap and told the girls to just do it. All the while, Ethan was standing in the corner of the room with his fingers in his ears and was squeezing his eyes shut. He absolutely can't stand to see his sister hurting. Once the ears were pierced, Emily opened her eyes and couldn't believe that it was done. She really didn't feel a thing at first and then she said that it burned for a little bit. She just broke down crying because of her release of emotions, but she was so happy that it was done. I asked her if she was mad at me for holding her down and doing it, and she said that she wasn't because she really wanted the earrings. Today is a new day and Emily has admired herself in the mirror several times to look at her beautiful new earrings.
My baby is growing up. I guess getting your ears pierced is a right of passage of sorts. I have been watching her change before my eyes for a while now and it amazes me. I tried to fight it in the beginning, but now I embrace it and I just enjoy watching her become the person that she is going to be. I have always known that Emily was wise beyond her years and having conversations with her was always like talking with a little adult. Now I watch her do things at age 7, but still probably in a 5 year old's body, and I'm thinking that she is 7 going on 17. Emily often spends much of her day listening to her mp3 player and jamming out to her music. She loves reading all of the teen gossip magazines, and she even brings me the articles and starts telling me things like "Can you believe this..." or "Look what she did!" It's really kind of cute. I have to help her pull the posters out and then we hang them all over her room. But the thing that I think shocked me the most one day was when I overheard her while looking at a magazine and I heard her say to herself, "Wow! Taylor Lautner DOES have muscles!" I about fell over when she said that. She was also talking to me about the Jonas Brothers and we were discussing which Jonas Brother was her favorite. Then she said, "Well it depends." I asked her what it depended on. That is when she told me that it depended on whether she was picking for the cuteness factor or for his music. Seriously, Emily?!?! You're only SEVEN!!!! So, for the record, Joe Jonas is picked for the cuteness factor and Nick Jonas is chosen for his music. Then she told me that her two best friends and her actually argue about this point in school. Whoa! Are you kidding me? And we just got a few new posters to add to her already crowded walls. She is now adding Taylor Lautner, Justin Bieber, The Jonas Brothers, and another Taylor Swift. That will add to her already crowded room of Edward and Bella from Twilight, Miley Cyrus, Taylor Swift, Selena Gomez, and Nick Jonas.
And just in case anybody is wondering about Ethan and what he is into. It is totally about Star Wars and Indiana Jones. Ethan pretty much goes around the house humming the theme songs to Star Wars. He colors pages out of a Star Wars coloring book. He watches the movies all the time. He plays the Lego Star Wars game on the Wii and also on his Nintendo DS. He plays with his Star Wars action figures. His life revolves around Star Wars with a little Indiana Jones thrown in to change it up a bit.
I can't believe how fast my kids are growing up. It is like I blink my eyes and they change before I know it. One thing that I have always said, though, is how important it is to just take time to stop and enjoy each and every stage of their lives. Even though they are growing up so quickly, I know that I have really been there to enjoy and experience every moment with my children through their childhood. I still love to see the world through their eyes in all of their innocence and I love their excitement when they learn something new for the first time. I can't wait to see what tomorrow brings and to see what new things they are into for the moment and to watch them experience what life has to offer.
Sunday, March 14, 2010
Saturday, March 13, 2010
Hanging on!
I thought it was about time that I post an update. Emily is hanging on. She is still having headaches almost daily, but we are back to having the positional headaches that can often be quickly relieved by having her lay down to equalize the pressure in her head. As hard as it is to have her still having headaches, these are much more bearable than what we went through for that week of hell when her pressure was increased because for the most part Emily is a very happy child who seems to be enjoying life despite the moments of pain. I will be taking her back to the neurosurgeon and see if we can possibly make one more small adjustment, but I'm a little scared, too, after what happened before. Just the slightest pressure change can totally change her personality and it is frightening. As I sit here typing this, Emily is jamming out to "Party in the U.S.A." on her mp3 player in the living room and is dancing up a storm. I love it!
Ethan just started baseball this week. What the heck have we gotten ourselves into???? This is one hefty commitment. It is three days of practice a week. And I some how have to squeeze in taking him to Pensacola one day a week for allergy shots, and then God forbid I have any other appointments for the kids. Oh, and have I mentioned that Emily is about to start tennis lessons soon? It wouldn't be so bad if my plate wasn't already full with their other appointments I am always having to go to. I just hope that I can keep up with it all. On the positive side, Ethan said that he is loving baseball after just the first week. Since he has never played it before, he has a lot of catching up to do to be where the other players are on his team, but we are lucky that we have a great coach. His coach is really doing an awesome job of teaching him what to do. Now, if I can just get him to stop picking grass out in the outfield then things would be perfect. But on a side note, the fact that he is even TOUCHING the grass is an amazing thing. Ethan has sensory issues and has always had an aversion to grass. In fact, the first couple of times that he was out on the field with the other boys, he wouldn't even sit in the grass because he wouldn't touch it. I was watching out there and I noticed that he was squatting because he wouldn't allow himself to touch the grass. I was starting to get very worried how he was going to cope with playing ball if he couldn't get past his grass aversion. So, as much as I hated seeing him not pay attention last night when he was in the outfield, I was secretly LOVING the fact that I saw him actually picking the grass. Oh, the little things that we moms take joy in. It's baby steps for us. Now, somebody please tell me how to teach him to cope with his bug phobia and things will be perfect in Ethan World. And another thing that I was quite proud of last night was how well Ethan handled a slight injury on the field without breaking down into the full blown drama that sometimes happens when he gets hurt. As he was running from first base to second base, the ball that was hit came and hit him straight on in his leg. And it did hit pretty hard! He stopped for a minute, grabbed his leg and still kept on hobbling on to second base. He never cried. He never went into any kind of dramatic meltdown. It was great. I sat there in the dugout and quietly watched to see what would happen. The coach just yelled and asked if he was okay. He stood up and shrugged it off and then ran on to third with the next hit. It was quite a proud moment and I think a very first moment of its kind, too. I think organized sports have been a really good thing for Ethan.
Today just might be a big day for Emily. She has informed me that she wants to get her ears pierced. Actually, she has been MAD at me because I didn't have them pierced when she was a baby. She told me that I should have done it back then because then she wouldn't have to worry about it now. I had to show her how tiny her little ears are. I told her that her ear lobes weren't big enough to even pierce back when she was a baby and that I wanted her to be old enough to make the decision on her own. Well, now the decision has been made, but she is scared to death of the pain. All of her friends have their ears pierced and she doesn't like being left out. Plus she likes looking at my earrings and she has been wanting this for so long. So, today is the day and to help with the process, I am going to numb her ears with Emla cream. I hope she goes through with it. We'll have to wait and see what happens.
To be continued...
Ethan just started baseball this week. What the heck have we gotten ourselves into???? This is one hefty commitment. It is three days of practice a week. And I some how have to squeeze in taking him to Pensacola one day a week for allergy shots, and then God forbid I have any other appointments for the kids. Oh, and have I mentioned that Emily is about to start tennis lessons soon? It wouldn't be so bad if my plate wasn't already full with their other appointments I am always having to go to. I just hope that I can keep up with it all. On the positive side, Ethan said that he is loving baseball after just the first week. Since he has never played it before, he has a lot of catching up to do to be where the other players are on his team, but we are lucky that we have a great coach. His coach is really doing an awesome job of teaching him what to do. Now, if I can just get him to stop picking grass out in the outfield then things would be perfect. But on a side note, the fact that he is even TOUCHING the grass is an amazing thing. Ethan has sensory issues and has always had an aversion to grass. In fact, the first couple of times that he was out on the field with the other boys, he wouldn't even sit in the grass because he wouldn't touch it. I was watching out there and I noticed that he was squatting because he wouldn't allow himself to touch the grass. I was starting to get very worried how he was going to cope with playing ball if he couldn't get past his grass aversion. So, as much as I hated seeing him not pay attention last night when he was in the outfield, I was secretly LOVING the fact that I saw him actually picking the grass. Oh, the little things that we moms take joy in. It's baby steps for us. Now, somebody please tell me how to teach him to cope with his bug phobia and things will be perfect in Ethan World. And another thing that I was quite proud of last night was how well Ethan handled a slight injury on the field without breaking down into the full blown drama that sometimes happens when he gets hurt. As he was running from first base to second base, the ball that was hit came and hit him straight on in his leg. And it did hit pretty hard! He stopped for a minute, grabbed his leg and still kept on hobbling on to second base. He never cried. He never went into any kind of dramatic meltdown. It was great. I sat there in the dugout and quietly watched to see what would happen. The coach just yelled and asked if he was okay. He stood up and shrugged it off and then ran on to third with the next hit. It was quite a proud moment and I think a very first moment of its kind, too. I think organized sports have been a really good thing for Ethan.
Today just might be a big day for Emily. She has informed me that she wants to get her ears pierced. Actually, she has been MAD at me because I didn't have them pierced when she was a baby. She told me that I should have done it back then because then she wouldn't have to worry about it now. I had to show her how tiny her little ears are. I told her that her ear lobes weren't big enough to even pierce back when she was a baby and that I wanted her to be old enough to make the decision on her own. Well, now the decision has been made, but she is scared to death of the pain. All of her friends have their ears pierced and she doesn't like being left out. Plus she likes looking at my earrings and she has been wanting this for so long. So, today is the day and to help with the process, I am going to numb her ears with Emla cream. I hope she goes through with it. We'll have to wait and see what happens.
To be continued...
Tuesday, March 2, 2010
Holding onto hope
We saw the neurosurgeon today and Emily had her shunt reprogrammed again. The ironic thing is that today happened to be the one and only day that she seemed to be feeling great. She was bouncing around and feeling happy and I just didn't know what to think. It is times like that when I start to second guess myself and I thoroughly hate that. And that is when I am so thankful that I keep good notes on Emily's condition on the calendar so I have something concrete to look back on to see how she is really doing. Being a parent can be so hard sometimes when you are constantly second guessing yourself and wondering if you are making the right decisions for your child.
When we got into the doctor's office, I explained to the neurosurgeon's assistant how it just so happened that Emily was having a great day, her first headache free day in a week. I explained about her daily multiple headaches, how they were much more intense and lasted longer than normal, and how Emily's personality was changed. I talked about how she is just overall more irritable and not happy than she was before this last adjustment. Right before the assistant had walked in the room to get her vital signs, Emily had just finished telling me how good she was feeling and how she was feeling a zero on the pain scale chart right then. She was actually pretty talkative to me. Well, from the amount of time it took for the assistant to take Emily's vitals and get that bit of information from me, walk out of the room and consult with the doctor, and then have the doctor walk back in, Emily had suddenly been hit with a headache right there in the office. That amount of time was about 15 minutes. I watched Emily go from sitting there thumbing through a National Geographic magazine to watching her eyebrows kind of draw together and her telling me that she needed to lay down on the table in the room because she was getting a headache. By that time, she told me that her pain was up to a four on the pain scale chart. It was like a snap of the finger. When the doctor walked in I explained what was going on and she took out her little flashlight and shined it in Emily's eyes. (For those of you that aren't aware, the neurosurgeon can see the pressure in your brain by shining the light through your eyes. Interesting, huh?!) Emily was declining pretty quickly.
The doctor and I talked a little bit about Emily's problems and she said that her last adjustment was just overshot and she was going to bring her back down to 150. It is just a little bit of trial and error until we can get it right. We talked about how she tapped her shunt in Dec when the pressure was set at 100 and because of the results of the shunt tap and with the headaches she was having back then, Emily was way overdraining then. That was when we bumped it up to 130 at her first adjustment. Because she had such remarkable improvement in her personality, that told the doctor that we were on the right track, but it still wasn't just right because she was still having positional headaches. That was when the adjustment to 200 took place last week. Unfortunately, Emily's headaches no longer became the easy to handle positional kind anymore. These headaches are killer headaches on an extreme level because they are high pressure headaches. I am so hopeful now that her shunt has been reprogrammed again, maybe Emily can start to lead a normal life.
After we left the office today, we had to head to Ethan's allergy doctor to get his weekly shots. Since we were in Pensacola anyway, I decided to kill two birds with one stone and handle all medical stuff in one day this week with both kids. Well, poor Emily was miserable. I didn't plan on her headache being so bad and there just wasn't anything I could do about it. My mom went with me to P'cola today and I'm glad she did. Emily passed out in her lap at Ethan's doctor's office and I helped Ethan cope with his shots. Ethan has been getting two shots in his arms every single week since last August and he never really complained or had any kind of problems with them until the last month or so. Now he suddenly has developed this anxiety when he gets them and then he tenses up and it hurts worse for him. I even use Emla cream so he can't feel the pain of the needles. I just hate it that he needs these darn shots at all.
Emily's headaches have continued on and off all evening. Just when she thinks that it might be going away and she tries to get up and play a game or take her bath or eat dinner, the headache suddenly returns in full force. She flops back down on the couch with a trash can in front of her in case she needs to throw up. When I was putting her to bed tonight she asked me if I would go ahead and turn on the baby monitor in my room. You see, as sad as it is, we still need to use a baby monitor at times when Emily's headaches are this bad in case she wakes up in the middle of the night vomiting. Who would have thought that I would still be using my baby monitor when my kids were 7 1/2 years old?!?! Hmmm, maybe I should invest in a newer model. It certainly doesn't look like I'll be getting rid of it anytime soon. :(
When we got into the doctor's office, I explained to the neurosurgeon's assistant how it just so happened that Emily was having a great day, her first headache free day in a week. I explained about her daily multiple headaches, how they were much more intense and lasted longer than normal, and how Emily's personality was changed. I talked about how she is just overall more irritable and not happy than she was before this last adjustment. Right before the assistant had walked in the room to get her vital signs, Emily had just finished telling me how good she was feeling and how she was feeling a zero on the pain scale chart right then. She was actually pretty talkative to me. Well, from the amount of time it took for the assistant to take Emily's vitals and get that bit of information from me, walk out of the room and consult with the doctor, and then have the doctor walk back in, Emily had suddenly been hit with a headache right there in the office. That amount of time was about 15 minutes. I watched Emily go from sitting there thumbing through a National Geographic magazine to watching her eyebrows kind of draw together and her telling me that she needed to lay down on the table in the room because she was getting a headache. By that time, she told me that her pain was up to a four on the pain scale chart. It was like a snap of the finger. When the doctor walked in I explained what was going on and she took out her little flashlight and shined it in Emily's eyes. (For those of you that aren't aware, the neurosurgeon can see the pressure in your brain by shining the light through your eyes. Interesting, huh?!) Emily was declining pretty quickly.
The doctor and I talked a little bit about Emily's problems and she said that her last adjustment was just overshot and she was going to bring her back down to 150. It is just a little bit of trial and error until we can get it right. We talked about how she tapped her shunt in Dec when the pressure was set at 100 and because of the results of the shunt tap and with the headaches she was having back then, Emily was way overdraining then. That was when we bumped it up to 130 at her first adjustment. Because she had such remarkable improvement in her personality, that told the doctor that we were on the right track, but it still wasn't just right because she was still having positional headaches. That was when the adjustment to 200 took place last week. Unfortunately, Emily's headaches no longer became the easy to handle positional kind anymore. These headaches are killer headaches on an extreme level because they are high pressure headaches. I am so hopeful now that her shunt has been reprogrammed again, maybe Emily can start to lead a normal life.
After we left the office today, we had to head to Ethan's allergy doctor to get his weekly shots. Since we were in Pensacola anyway, I decided to kill two birds with one stone and handle all medical stuff in one day this week with both kids. Well, poor Emily was miserable. I didn't plan on her headache being so bad and there just wasn't anything I could do about it. My mom went with me to P'cola today and I'm glad she did. Emily passed out in her lap at Ethan's doctor's office and I helped Ethan cope with his shots. Ethan has been getting two shots in his arms every single week since last August and he never really complained or had any kind of problems with them until the last month or so. Now he suddenly has developed this anxiety when he gets them and then he tenses up and it hurts worse for him. I even use Emla cream so he can't feel the pain of the needles. I just hate it that he needs these darn shots at all.
Emily's headaches have continued on and off all evening. Just when she thinks that it might be going away and she tries to get up and play a game or take her bath or eat dinner, the headache suddenly returns in full force. She flops back down on the couch with a trash can in front of her in case she needs to throw up. When I was putting her to bed tonight she asked me if I would go ahead and turn on the baby monitor in my room. You see, as sad as it is, we still need to use a baby monitor at times when Emily's headaches are this bad in case she wakes up in the middle of the night vomiting. Who would have thought that I would still be using my baby monitor when my kids were 7 1/2 years old?!?! Hmmm, maybe I should invest in a newer model. It certainly doesn't look like I'll be getting rid of it anytime soon. :(
Monday, March 1, 2010
Another bad week!
Well, I think it is safe to assume that the current shunt programming is a big bust! Emily has not been herself this past week and she has been suffering from more headaches than normal. In fact, there has only been one day that she has not had a headache and on some days she has had two and three of them. Plus, these headaches last longer than normal and they really wipe her out. With her last adjustment, when she went from 100 to 130, we saw such a huge improvement in her personality. She became happy and full of life and just seemed to be doing so much better overall, but still having headaches on occasion. This time, when she went from 130 to 200, not only has she had more headaches, but her personality has changed again. She just seems down. It is like all of her happiness has been sucked out of her. It is an awful thing to see your child go through. It is like she is walking around in a fog all the time.
As I was sitting here typing this update, I got a call from Emily's teacher that she just had her second headache of the day and I need to go pick her up at school. It is only 10:30 in the morning. My heart is just breaking right now for my baby girl! I'll finish this update when I get back home.
We just got home from the school. You can just tell from the look in Emily's eyes that she is hurting. Poor thing. I just hate it for her. I don't know what is going to happen from here regarding further adjustments or tests. I'm assuming that we will need to reduce the pressure down from 200 to maybe 160 or 150. And although I don't plan to let Emily know this yet, I am also wondering if the doctor wouldn't want to also plan to tap her shunt. Back in December when she tapped her shunt, it appeared to not be working properly, but we weren't going to jump to do a brain surgery just from one shunt tap. I'm also wondering if some type of surgical procedure is just unavoidable now, whether it will be the ICP monitoring or ultimately another revision. I'll post an update again after we do see the neurosurgeon and I have some answers. In the meantime, we just have to do the best we can and Emily just has to cope with these horrible headaches.
On a positive note, Ethan did have his baseball assessments last week. He loved every second of it. He was a little in awe of being out on a real baseball field. He didn't realize how far apart the bases were. Ha-ha! And so when it came time for his turn at throwing and catching, he didn't quite throw hard enough to make it to the next base. But goodness, I wouldn't be able to either. And he has NEVER played baseball before in his life. In fact, until a couple of weeks ago, he had never even picked up a ball and glove. I was very proud at how well he did. And I was extremely proud of his batting. They pitched four balls to him. He hit two out of the four, but those two pitches were AWESOME hits!!!! And then to end his week, he had his final basketball game on Saturday. It was the best game his team had all season. And it was the best Ethan had played all season. He even got in there and got the ball a couple of times AND he scored two points for his team! But the best part of all was his defensive playing. He is the best defensive player on the team and he played such a good defensive game that I thought he was going to make the little girl on the other team start crying because she couldn't get around him for anything. It was kind of funny and kind of sad all at the same time. At one point, the poor girl stood there with hands on her hips and just looked up into the stands at her mom and got so mad at Ethan. Her mom was laughing and I was laughing, too. Ethan gets serious when he is playing defense. NOBODY is getting past him! It was so nice seeing him have such a love for the game and being so excited about it. He keeps talking about when he signs up next year, too. I can't wait!
As I was sitting here typing this update, I got a call from Emily's teacher that she just had her second headache of the day and I need to go pick her up at school. It is only 10:30 in the morning. My heart is just breaking right now for my baby girl! I'll finish this update when I get back home.
We just got home from the school. You can just tell from the look in Emily's eyes that she is hurting. Poor thing. I just hate it for her. I don't know what is going to happen from here regarding further adjustments or tests. I'm assuming that we will need to reduce the pressure down from 200 to maybe 160 or 150. And although I don't plan to let Emily know this yet, I am also wondering if the doctor wouldn't want to also plan to tap her shunt. Back in December when she tapped her shunt, it appeared to not be working properly, but we weren't going to jump to do a brain surgery just from one shunt tap. I'm also wondering if some type of surgical procedure is just unavoidable now, whether it will be the ICP monitoring or ultimately another revision. I'll post an update again after we do see the neurosurgeon and I have some answers. In the meantime, we just have to do the best we can and Emily just has to cope with these horrible headaches.
On a positive note, Ethan did have his baseball assessments last week. He loved every second of it. He was a little in awe of being out on a real baseball field. He didn't realize how far apart the bases were. Ha-ha! And so when it came time for his turn at throwing and catching, he didn't quite throw hard enough to make it to the next base. But goodness, I wouldn't be able to either. And he has NEVER played baseball before in his life. In fact, until a couple of weeks ago, he had never even picked up a ball and glove. I was very proud at how well he did. And I was extremely proud of his batting. They pitched four balls to him. He hit two out of the four, but those two pitches were AWESOME hits!!!! And then to end his week, he had his final basketball game on Saturday. It was the best game his team had all season. And it was the best Ethan had played all season. He even got in there and got the ball a couple of times AND he scored two points for his team! But the best part of all was his defensive playing. He is the best defensive player on the team and he played such a good defensive game that I thought he was going to make the little girl on the other team start crying because she couldn't get around him for anything. It was kind of funny and kind of sad all at the same time. At one point, the poor girl stood there with hands on her hips and just looked up into the stands at her mom and got so mad at Ethan. Her mom was laughing and I was laughing, too. Ethan gets serious when he is playing defense. NOBODY is getting past him! It was so nice seeing him have such a love for the game and being so excited about it. He keeps talking about when he signs up next year, too. I can't wait!
Tuesday, February 23, 2010
Another Reprogramming
It has been a busy month. I can't believe that February is getting close to being over. Rob and I celebrated our 17th wedding anniversary on Valentine's Day. How has it been that long? It seems like only yesterday that we met, but then again it also seems like a lifetime ago.
Emily has still been having headaches. She has been averaging about three per week. It has been exactly four weeks today since her shunt was reprogrammed the first time and we went to see the neurosurgeon today to have it done again. The original setting was at 100 and she was bumped up to 130. She was going to bump her up again today to 150, but when we got in there she decided to go higher. Her pressure is now set at 200. I am praying hard that this works for her.
While I was in her office, I talked to the doctor about a concern I have been having lately about Emily's short term memory. There have been many times when I am very surprised at Emily's lack of recollection on things. And I'm not talking about the usual thing like "What did you do at school today?" question and then getting the reply like "uuuhhhh, I don't know." Of course, I get that from both kids. And I'm also not just talking about not being able to remember what you had for breakfast or dinner. But there have been times when we will discuss things as a family like places we have gone, or things we have seen, and Emily will absolutely have no recollection of it. I will talk about something with her that we might have already done together just within the past couple of months and she may not remember doing it at all. When I talked to the neurosurgeon about it, she just nodded her head and said that short term memory loss is normal and is to be expected because of the intraventricular hemorrhage she had. My heart just kind of jumped up in my throat in that instant. I mean, I have done enough research on my child's condition that I really already knew this, but she has surpassed so many of the other textbook cases that I guess thought she would not have to deal with any of these types of problems. We talked about Emily's intelligence level and how well she is doing in school and her reading level, etc, and the doctor said that the good news is that as Emily gets farther along in school then there is a very good chance that she should be able to compensate well for any memory loss issues that she is faced with. However, she does want to go ahead and set up some testing for her just to see where she is at right now. They will call me to get that scheduled.
Before we left to head home from Pensacola, Emily had a horrible accident in the parking lot. She was trying to skip to the car and she just tripped over her own feet and took a terrible nose dive across the parking lot. It was H-O-R-R-I-B-L-E!!!! She really skinned up her knee and hand. In fact, she had skin dangling from her hand in two places and one place on her knee. I had to lift her up with one hand out of the middle of the parking lot and carry her to the car and all of our stuff with the other hand. Thank goodness I had some of the Neo to Go stuff in my purse to spray in the cuts to clean them up and then I dug out the emergency band-aids out of the car to put on her. Poor thing was so pitiful and was hugging me and telling me she loved me and thanking me for taking care of her. It was just so sweet. And then while I was trying to make the 45 minute drive home from Pensacola, she was crying, "Do you have any idea how much pain I'm in right now?!?!" She literally had me crying, too!
On a positive note, Ethan is so excited because he will be playing baseball this year. He had so much fun playing basketball and although he is pretty upset that this Saturday is his last game, he is very excited to be playing baseball. Tonight will be the baseball assessments and he is pretty pumped about it. Emily has decided to play tennis again. So, I will be one very busy mama this Spring and Summer. Let's just pray that the kiddos can stay healthy and can enjoy their activities.
Emily has still been having headaches. She has been averaging about three per week. It has been exactly four weeks today since her shunt was reprogrammed the first time and we went to see the neurosurgeon today to have it done again. The original setting was at 100 and she was bumped up to 130. She was going to bump her up again today to 150, but when we got in there she decided to go higher. Her pressure is now set at 200. I am praying hard that this works for her.
While I was in her office, I talked to the doctor about a concern I have been having lately about Emily's short term memory. There have been many times when I am very surprised at Emily's lack of recollection on things. And I'm not talking about the usual thing like "What did you do at school today?" question and then getting the reply like "uuuhhhh, I don't know." Of course, I get that from both kids. And I'm also not just talking about not being able to remember what you had for breakfast or dinner. But there have been times when we will discuss things as a family like places we have gone, or things we have seen, and Emily will absolutely have no recollection of it. I will talk about something with her that we might have already done together just within the past couple of months and she may not remember doing it at all. When I talked to the neurosurgeon about it, she just nodded her head and said that short term memory loss is normal and is to be expected because of the intraventricular hemorrhage she had. My heart just kind of jumped up in my throat in that instant. I mean, I have done enough research on my child's condition that I really already knew this, but she has surpassed so many of the other textbook cases that I guess thought she would not have to deal with any of these types of problems. We talked about Emily's intelligence level and how well she is doing in school and her reading level, etc, and the doctor said that the good news is that as Emily gets farther along in school then there is a very good chance that she should be able to compensate well for any memory loss issues that she is faced with. However, she does want to go ahead and set up some testing for her just to see where she is at right now. They will call me to get that scheduled.
Before we left to head home from Pensacola, Emily had a horrible accident in the parking lot. She was trying to skip to the car and she just tripped over her own feet and took a terrible nose dive across the parking lot. It was H-O-R-R-I-B-L-E!!!! She really skinned up her knee and hand. In fact, she had skin dangling from her hand in two places and one place on her knee. I had to lift her up with one hand out of the middle of the parking lot and carry her to the car and all of our stuff with the other hand. Thank goodness I had some of the Neo to Go stuff in my purse to spray in the cuts to clean them up and then I dug out the emergency band-aids out of the car to put on her. Poor thing was so pitiful and was hugging me and telling me she loved me and thanking me for taking care of her. It was just so sweet. And then while I was trying to make the 45 minute drive home from Pensacola, she was crying, "Do you have any idea how much pain I'm in right now?!?!" She literally had me crying, too!
On a positive note, Ethan is so excited because he will be playing baseball this year. He had so much fun playing basketball and although he is pretty upset that this Saturday is his last game, he is very excited to be playing baseball. Tonight will be the baseball assessments and he is pretty pumped about it. Emily has decided to play tennis again. So, I will be one very busy mama this Spring and Summer. Let's just pray that the kiddos can stay healthy and can enjoy their activities.
Monday, February 8, 2010
This and That
We were on our way to church yesterday morning and Emily was reading her Bible. She was reading a daily devotion on faith. It was a pretty long passage and she read it aloud to Ethan and me. It talked about a little boy who was hurt and in a hospital and he didn't know if he would get better or not, but he did a silent prayer to God. And he had faith to believe that God would take care of him no matter what the results of his surgery would be. The story continued and talked about having faith and believing and trusting in God to always be by our side no matter what. Well, when Emily was finished reading the entire thing, I thought it was a very good time to continue with the discussion about faith in our own lives. I first wanted to ask and make sure that they truly understood what it meant to have faith and to trust in God. This was the discussion that then took place...
Me: Emily, do you understand what having faith is?
Emily: [said in her usual sarcastic way] Um, yeah! I had faith that I would FINALLY get finished with reading that page!
That was pretty much the end of our conversation because I was too busy laughing after that. I don't know what I'm going to do with that child of mine. I can't compete with her quick wit. I am often left speechless around her.
Later in the day, as we were doing our grocery shopping, my girl shocked me again when she found something that I didn't think that we'd have to deal with for quite a while. It was a teen celeb magazine. Oh, dear Lord. At SEVEN? She isn't even a "tween" yet? But there she was thumbing through the pages and reading about all of her favorite celebrity gossip. Her face was shoved in that magazine while I was going through the store and when she would get to a really good part, she would stop me and fill me in on it. And I have to be honest and say that it really only feels like yesterday when I was getting my own magazines like that and putting up pictures of Kirk Cameron and Duran Duran on my wall. Right now it isn't about the "boys" for Emily, but it is totally about her idols - Taylor Swift, Selena Gomez, and Miley Cyrus.
While in the book isle yesterday, Ethan picked up and started reading the book "Diary of a Wimpy Kid". He was literally sitting on the floor of Walmart and reading this book. This is HUGE! While Ethan is a pretty good reader, actually getting him interested in reading is a whole other issue. He was loving this book and read several pages just while sitting on the floor. What else could a mom do, but buy the book! He was reading it on the car ride home. He picked it up again this morning and read some more. I have to say that I am very excited about this! I am a huge reader. Emily is a huge reader. And I have tried really hard not to push Ethan until he was ready. This just thrills me to death. Ethan was also just introduced to Harry Potter the other day when the first movie came on TV and he is HOOKED! He was sucked right in to the whole thing and he got very excited when I told him that Harry Potter is actually a series of books. We may get a couple and read them together.
Our morning today started out just like every other day. The kids both got up early like usual so they could have time to play before school. They did everything they needed to do with lots of time to spare. The day was going well. We even managed to leave our house in plenty of time so we weren't rushing to get to school and the kids weren't going to be standing in the "late line" today. I pulled up in the car line to drop off my sweet and beautiful children. I rolled up to a stop and as my darlings were getting out we said our goodbyes - "I love you" and "have a good day". I watched them skip and run their way to the front door of the school while I was still waiting for the car line to move so I could drive off. And then it happened! Just before my two offspring were to walk through the doors, the little one starts to beat the crap out of the bigger one! I sat there in my car watching the scene for a moment and then I just shook my head and continued to roll forward with the rest of the car line. Well, it is a Monday!
Later today, I kind of described this exact moment to the kids to see what kind of reaction I would get from them. And honestly, I wanted to know why Emily was beating up her brother at school. I mean, the little meanie does it all the time at home, but she should control those impulses at school. And it's quite sad really because Ethan won't fight her back even though he could and he could win. But he would NEVER do anything to hurt her. So, when I explained this little scene to the kids and then explained about how I saw the little one beating up the bigger one, Emily just busted out laughing. And she said, "Oh yeah, I did." And then Ethan agreed, too. However, neither one could tell me WHY she was doing it. They both claim that they had forgotten. I had to talk to them about how they aren't allowed to beat each other up at school, and it especially isn't a smart thing to do right in front of the office again. [Sigh!]
Me: Emily, do you understand what having faith is?
Emily: [said in her usual sarcastic way] Um, yeah! I had faith that I would FINALLY get finished with reading that page!
That was pretty much the end of our conversation because I was too busy laughing after that. I don't know what I'm going to do with that child of mine. I can't compete with her quick wit. I am often left speechless around her.
Later in the day, as we were doing our grocery shopping, my girl shocked me again when she found something that I didn't think that we'd have to deal with for quite a while. It was a teen celeb magazine. Oh, dear Lord. At SEVEN? She isn't even a "tween" yet? But there she was thumbing through the pages and reading about all of her favorite celebrity gossip. Her face was shoved in that magazine while I was going through the store and when she would get to a really good part, she would stop me and fill me in on it. And I have to be honest and say that it really only feels like yesterday when I was getting my own magazines like that and putting up pictures of Kirk Cameron and Duran Duran on my wall. Right now it isn't about the "boys" for Emily, but it is totally about her idols - Taylor Swift, Selena Gomez, and Miley Cyrus.
While in the book isle yesterday, Ethan picked up and started reading the book "Diary of a Wimpy Kid". He was literally sitting on the floor of Walmart and reading this book. This is HUGE! While Ethan is a pretty good reader, actually getting him interested in reading is a whole other issue. He was loving this book and read several pages just while sitting on the floor. What else could a mom do, but buy the book! He was reading it on the car ride home. He picked it up again this morning and read some more. I have to say that I am very excited about this! I am a huge reader. Emily is a huge reader. And I have tried really hard not to push Ethan until he was ready. This just thrills me to death. Ethan was also just introduced to Harry Potter the other day when the first movie came on TV and he is HOOKED! He was sucked right in to the whole thing and he got very excited when I told him that Harry Potter is actually a series of books. We may get a couple and read them together.
Our morning today started out just like every other day. The kids both got up early like usual so they could have time to play before school. They did everything they needed to do with lots of time to spare. The day was going well. We even managed to leave our house in plenty of time so we weren't rushing to get to school and the kids weren't going to be standing in the "late line" today. I pulled up in the car line to drop off my sweet and beautiful children. I rolled up to a stop and as my darlings were getting out we said our goodbyes - "I love you" and "have a good day". I watched them skip and run their way to the front door of the school while I was still waiting for the car line to move so I could drive off. And then it happened! Just before my two offspring were to walk through the doors, the little one starts to beat the crap out of the bigger one! I sat there in my car watching the scene for a moment and then I just shook my head and continued to roll forward with the rest of the car line. Well, it is a Monday!
Later today, I kind of described this exact moment to the kids to see what kind of reaction I would get from them. And honestly, I wanted to know why Emily was beating up her brother at school. I mean, the little meanie does it all the time at home, but she should control those impulses at school. And it's quite sad really because Ethan won't fight her back even though he could and he could win. But he would NEVER do anything to hurt her. So, when I explained this little scene to the kids and then explained about how I saw the little one beating up the bigger one, Emily just busted out laughing. And she said, "Oh yeah, I did." And then Ethan agreed, too. However, neither one could tell me WHY she was doing it. They both claim that they had forgotten. I had to talk to them about how they aren't allowed to beat each other up at school, and it especially isn't a smart thing to do right in front of the office again. [Sigh!]
Friday, February 5, 2010
Answered Prayers
So far, it really is looking like 2010 is turning out to be our year. On Wednesday I received a call from Dr. Canady, Emily's neurosurgeon. She wanted to talk to me about how Emily has been doing since the shunt reprogramming. I filled her in on everything. I let her know about Emily's total personality change, about how Emily seems so much more full of life, full of energy, just overall a happier child. I told her about the conversation that I had with Emily's teacher about how Emily is like a different person in class now, too, because she just seems to have so much more energy now. It is like we never really knew how much constant pain she stayed in before. However, despite that, I did explain to her that she is still experiencing headaches. And the headaches are exactly like they were before the reprogramming. They do not last long. Emily still needs to lay down to get rid of them. Once the pressure is relieved, she gets up and seems to be fine. She has had four of them so far in only a week and a half.
After Dr. Canady listened to everything I had to say, she sounded very pleased and even laughed a little bit when talking about Emily's newfound energy and she said that she is very pleased with the direction we are headed. She said that she doesn't see the need for any type of invasive procedures at this time on Emily because it looks as if the reprogramming is working for her. She said that she feels like we need to cancel her surgery for now. The fact that Emily showed such remarkable improvement is a wonderful sign, and even though she is still having headaches, she may still just need a little more adjusting. Dr. Canady said to give Emily one more week to see if everything levels out. If she is still suffering from headaches, then we will bring her back in and she will bump her setting up to 150 (she is at 130 now).
So, our many prayers have been answered and our baby girl has avoided having her 7th brain surgery for now. The relief that we feel right now is overwhelming! And to add to our even better week, Rob received his first paycheck today after starting his new job!!! After going over seven months without a real paycheck, this was HEAVEN!!!!! :)
After Dr. Canady listened to everything I had to say, she sounded very pleased and even laughed a little bit when talking about Emily's newfound energy and she said that she is very pleased with the direction we are headed. She said that she doesn't see the need for any type of invasive procedures at this time on Emily because it looks as if the reprogramming is working for her. She said that she feels like we need to cancel her surgery for now. The fact that Emily showed such remarkable improvement is a wonderful sign, and even though she is still having headaches, she may still just need a little more adjusting. Dr. Canady said to give Emily one more week to see if everything levels out. If she is still suffering from headaches, then we will bring her back in and she will bump her setting up to 150 (she is at 130 now).
So, our many prayers have been answered and our baby girl has avoided having her 7th brain surgery for now. The relief that we feel right now is overwhelming! And to add to our even better week, Rob received his first paycheck today after starting his new job!!! After going over seven months without a real paycheck, this was HEAVEN!!!!! :)
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