So, we are just over 2 months post-surgery for Baby Girl. She has started having headaches.
We don't see the surgeon for follow-up until the end of February, after we get another MRI. It is so hard to see her in pain again, even if the headaches are not as bad as before.
I think all the pressure that was going on in her head was causing some delays in her development. She has started eating more, putting on a couple of pounds, filling out a little bit finally. Other changes are happening as well, and she is getting taller. Soon, I'll be the shortest one in the house.
School is a bit of a stress these days for her - girl drama. She was able to resume normal activities since surgery. Ice skating, downhill skiing, riding her horse, and even went deer hunting. She just has to wear a helmet with most activities (except hunting).
So, we wait patiently until we are able to see the Doc again.
Tuesday, January 13, 2015
Monday, November 17, 2014
She's doing so well
It has been 4 full weeks since Baby Girl had her decompression surgery. I am amazed every day at how well she has done. The outer stitches are working their way out now, causing some bumps and soreness, but otherwise, she is doing great.
We've had a few scares with school since she went back. One kid hit her hard in the head near her incision, on purpose. Ugg.. Had to call the school on that one. Another was a relative who grabbed her by the head and gave it a shake. To see if her brain would fall out. It was meant in fun, but I had to let his mom know about it. Thankfully, she was only sore after the first hit, and okay after the shake. Oh, and she got hit in the head at lunch by a basketball. GRRRRRRR It makes it hard on momma not to just run into the school and scream at these insensitive kids.
I think Brother was worried about the surgery. He has been hanging out with her more, teasing her more, and just being more goofy than normal with her. Brother told me that he was really scared when they took her into surgery that morning. That is a huge thing for him to admit to.
Thanks to all our friends during this time. And our supportive family. All the calls and visits have meant so much to us.
It's not pretty, but is healing up pretty well. :)
We've had a few scares with school since she went back. One kid hit her hard in the head near her incision, on purpose. Ugg.. Had to call the school on that one. Another was a relative who grabbed her by the head and gave it a shake. To see if her brain would fall out. It was meant in fun, but I had to let his mom know about it. Thankfully, she was only sore after the first hit, and okay after the shake. Oh, and she got hit in the head at lunch by a basketball. GRRRRRRR It makes it hard on momma not to just run into the school and scream at these insensitive kids.
I think Brother was worried about the surgery. He has been hanging out with her more, teasing her more, and just being more goofy than normal with her. Brother told me that he was really scared when they took her into surgery that morning. That is a huge thing for him to admit to.
Thanks to all our friends during this time. And our supportive family. All the calls and visits have meant so much to us.
It's not pretty, but is healing up pretty well. :)
Monday, November 3, 2014
Two Weeks Post-Op
It is hard to believe we are already 2 weeks post-op decompression surgery on Baby Girl!
She went back to school on Wednesday and has been doing amazing. Her friends were all so glad to see her and she missed everyone. So far, we have only had some soreness in the incision site after a long day. Plus the itching. Oh the itching of the incision site! Lol She is ready to wash her hair with something besides the baby shampoo they recommended.
It certainly has been a difficult time keeping her slowed down during this recovery time. Because her headache is finally gone, she feels like a new person. So, she has been trying to be a typical 13 year-old. She went trick-or-treating with her younger cousins on Friday, and had a blast. She was caught running from house to house and had to be reminded to slow down a bit. Our biggest risk right now is falling and hurting her head since she has not finished healing yet. Plus, their grade went ice skating on Friday and she went along and hung out with everyone instead of skating.
We have our followup with our surgeon on Friday of this week to see how she is recovering. I know that he will be further amazed by how well she is doing. We have 3 month MRI down the road to give them a base line for future, but otherwise, she will be totally released to grow up and be herself. No contact sports until the MRI, but that is about all.
We are thankful to be so blessed right now.
She went back to school on Wednesday and has been doing amazing. Her friends were all so glad to see her and she missed everyone. So far, we have only had some soreness in the incision site after a long day. Plus the itching. Oh the itching of the incision site! Lol She is ready to wash her hair with something besides the baby shampoo they recommended.
It certainly has been a difficult time keeping her slowed down during this recovery time. Because her headache is finally gone, she feels like a new person. So, she has been trying to be a typical 13 year-old. She went trick-or-treating with her younger cousins on Friday, and had a blast. She was caught running from house to house and had to be reminded to slow down a bit. Our biggest risk right now is falling and hurting her head since she has not finished healing yet. Plus, their grade went ice skating on Friday and she went along and hung out with everyone instead of skating.
We have our followup with our surgeon on Friday of this week to see how she is recovering. I know that he will be further amazed by how well she is doing. We have 3 month MRI down the road to give them a base line for future, but otherwise, she will be totally released to grow up and be herself. No contact sports until the MRI, but that is about all.
We are thankful to be so blessed right now.
Wednesday, October 22, 2014
Safely through surgery!
It has been an emotional roller coaster this week. Baby Girl had to be at the hospital at 5:45 am. MRI of her spine was 7:30 am under sedation. They then rolled her into surgery. Hours of waiting for my baby. Thankfully, the hospital staff called with updates after the MRI and during surgery. But still the waiting. My family support system is great. My dad and brother both flew in from down south, and the ex drove all night to be there for the day. Hubby and my son and I had quite the crowd of men to contend with and chat with for the day.
Our doctor is amazing. He only cut a tiny amount of hair on her head and even braided her pigtails. I've seen some other peoples' incisions and they look gross, as thick as a pencil, skin all weird. Not my Baby Girl's! We finally got to see her in recovery at 2:30 pm and were amazed at how well she was doing.
I will spare you all the details of the first night, but I don't think I slept more than 10 minutes each hour. My Baby Girl was a baby grizzly bear! Could have had something to do with the nurses coming in every hour, turning on the lights, and shining flashlights in her eyes. But the staff in ICU was amazing and kind. We could not have asked for more caring staff.
Day 2 brought her around like she had barely even had anything done. Not eating much but drinking some liquids. Therapy staff came and asked a few questions about school and home then took her for a walk. She came back smiling, and they were so pleased at what she was able to do so soon after surgery.
Day 3 visit from the surgeon and we were told we could go home because she was doing more than they expected her to do. Motor skills were great, walking up stairs and down, anything they wanted. So a few hours later, we unloaded the car and settled back into our normal life again.
Our doctor is amazing. He only cut a tiny amount of hair on her head and even braided her pigtails. I've seen some other peoples' incisions and they look gross, as thick as a pencil, skin all weird. Not my Baby Girl's! We finally got to see her in recovery at 2:30 pm and were amazed at how well she was doing.
I will spare you all the details of the first night, but I don't think I slept more than 10 minutes each hour. My Baby Girl was a baby grizzly bear! Could have had something to do with the nurses coming in every hour, turning on the lights, and shining flashlights in her eyes. But the staff in ICU was amazing and kind. We could not have asked for more caring staff.
Day 2 brought her around like she had barely even had anything done. Not eating much but drinking some liquids. Therapy staff came and asked a few questions about school and home then took her for a walk. She came back smiling, and they were so pleased at what she was able to do so soon after surgery.
Day 3 visit from the surgeon and we were told we could go home because she was doing more than they expected her to do. Motor skills were great, walking up stairs and down, anything they wanted. So a few hours later, we unloaded the car and settled back into our normal life again.
Friday, October 17, 2014
Countdown to decompression surgery
We are on the countdown. Just days away from heading to the children's hospital and have Baby Girl's head and neck opened up. Scary thoughts for sure. She's ready, the headaches are really bad, some days, and other days, they are less than bad.
How does one prepare for this type of thing? How do you handle all the questions people have? What can they do to help? I love my friends and family for all their support. I'm thinking they just give me an IV of muscle relaxants to ease my fears, or wine? I'm trying to get things ready at home so my wonderful husband and the boy will be okay every evening. Frozen meals are labeled in the freezer, family is set to bring some food by for them too. Laundry will all be washed up, groceries bought, litter boxes cleaned, dog to the groomer, notes for the hubby.... Am I ready?
I promised Baby Girl that I will not leave her side. So I've got to get my butt in gear and pack a bag for me as well. Charging cords for the phone, camera, and Kindle are ready to go. Pillows, blankets, her beloved blankie, some comfy clothes for us both. What about snacks? Drinks? I'm sure I'll forget something along the way.
As she enjoys her 13th birthday party and house full of giggling girls, I'm trying to make sure I appear to be strong and positive. Deep down, I'm not. Scared, nervous, and totally scatter-brained. I just keep telling myself that I'm the mom, I have to put on a brave front for her so she won't realize how scary this is. Plus, I've got to make sure the house is still running smoothly and everything is in place.
Wish us luck.
How does one prepare for this type of thing? How do you handle all the questions people have? What can they do to help? I love my friends and family for all their support. I'm thinking they just give me an IV of muscle relaxants to ease my fears, or wine? I'm trying to get things ready at home so my wonderful husband and the boy will be okay every evening. Frozen meals are labeled in the freezer, family is set to bring some food by for them too. Laundry will all be washed up, groceries bought, litter boxes cleaned, dog to the groomer, notes for the hubby.... Am I ready?
I promised Baby Girl that I will not leave her side. So I've got to get my butt in gear and pack a bag for me as well. Charging cords for the phone, camera, and Kindle are ready to go. Pillows, blankets, her beloved blankie, some comfy clothes for us both. What about snacks? Drinks? I'm sure I'll forget something along the way.
As she enjoys her 13th birthday party and house full of giggling girls, I'm trying to make sure I appear to be strong and positive. Deep down, I'm not. Scared, nervous, and totally scatter-brained. I just keep telling myself that I'm the mom, I have to put on a brave front for her so she won't realize how scary this is. Plus, I've got to make sure the house is still running smoothly and everything is in place.
Wish us luck.
Tuesday, September 30, 2014
Stress, Sports, Counting It Down
We are on the count-down until surgery. Trying to plan who is taking care of our other teen (Brother Bear) that week, making sure he makes it to and from school and gets food to eat. My husband wants to be at the hospital just as bad as I do, but I'll be the one glued to Baby Girl's side. Add in 2 dogs and 2 cats that will need to be fed, walked, watered, and loved on, my hubby will have his hands full!
How do we decide what to pack for her? I want to make sure I've got snacks and drinks handy for me so I do not have to leave her side if at all possible. I know she will not want to pull clothing over her head that is tight after surgery, but she owns nothing comfy that buttons up. Uggggg. I'm worried about the drive home with her in the car. Will the motion of travel make her sick to her stomach? What about all the bumps in the road? Can I just wrap her in a plastic bubble? Do we pack 100 pillows in the car to cushion her ride home?
Can you tell I'm stressed out with worry? I've been trying to make sure to shower Brother Bear with love and attention. It is hard to make sure he is not left out during this whole process. His biggest worry is that something will happen to her and he will not have anyone to fight with. I think that is his way of dealing with his fear about the upcoming surgery.
We postponed this surgery until after volleyball season is over. By doing so, she will at least get to play this year. Nobody knows what will happen after this. Will she be the same? Will she have any lasting affects?
The more we look into this strange affliction, the more we realize some of the things she has going on could be tied to her Chiari. Baby Girl has trouble swallowing sometimes, or gets choked on small amounts of food or liquids. Chiari. Or when she eats, even small amounts, her stomach then hurts. Chiari. Tingling fingers, feet, and scalp? Chiari These are only a few symptoms that she has had that can be blamed on the Chiari.
How do we decide what to pack for her? I want to make sure I've got snacks and drinks handy for me so I do not have to leave her side if at all possible. I know she will not want to pull clothing over her head that is tight after surgery, but she owns nothing comfy that buttons up. Uggggg. I'm worried about the drive home with her in the car. Will the motion of travel make her sick to her stomach? What about all the bumps in the road? Can I just wrap her in a plastic bubble? Do we pack 100 pillows in the car to cushion her ride home?
Can you tell I'm stressed out with worry? I've been trying to make sure to shower Brother Bear with love and attention. It is hard to make sure he is not left out during this whole process. His biggest worry is that something will happen to her and he will not have anyone to fight with. I think that is his way of dealing with his fear about the upcoming surgery.
We postponed this surgery until after volleyball season is over. By doing so, she will at least get to play this year. Nobody knows what will happen after this. Will she be the same? Will she have any lasting affects?
The more we look into this strange affliction, the more we realize some of the things she has going on could be tied to her Chiari. Baby Girl has trouble swallowing sometimes, or gets choked on small amounts of food or liquids. Chiari. Or when she eats, even small amounts, her stomach then hurts. Chiari. Tingling fingers, feet, and scalp? Chiari These are only a few symptoms that she has had that can be blamed on the Chiari.
Saturday, September 13, 2014
Surgeon Visit
We met with the surgeon this week. So many questions were answered. Because of Baby Girl's age, he thinks she should recover pretty quickly. They will open the skull about 1.5 inches and shave off the back of the first vertebrae. If the brain is "happy" at that point, he will then close her up. If it isn't "happy", then he will do the patch of the dura. This will mean he has to put kind of an extender patch on the covering of the brain to give the brain more room to float around. Scary stuff, but I must remember to trust in his skills.
Baby Girl is more worried about how much hair he will have to shave. Oh my! To be only concerned about that! We've decided to wait until after her birthday, so she won't be stuck at home recovering or laid up at the hospital. Recovery time looks like about 2 weeks down-time. No swimming, no school. Just taking it easy and handling the pain. After that, released to go back to school, but no contact sports. After 3 months, she can resume more regular life. We will have to make sure she is fully healed before she does anything too extreme.
So, by the time spring sports come around, Baby Girl should be able to participate as usual.
Baby Girl is more worried about how much hair he will have to shave. Oh my! To be only concerned about that! We've decided to wait until after her birthday, so she won't be stuck at home recovering or laid up at the hospital. Recovery time looks like about 2 weeks down-time. No swimming, no school. Just taking it easy and handling the pain. After that, released to go back to school, but no contact sports. After 3 months, she can resume more regular life. We will have to make sure she is fully healed before she does anything too extreme.
So, by the time spring sports come around, Baby Girl should be able to participate as usual.
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