It was eight years ago today when my life took a drastic turn down a new and very scary path. My mom and dad have talked about that day so long ago when the world seemed to stop.
April 30, 1999 was a Friday. Mom went home for lunch to make some food for the weekend because the Mackie family was going to come visit. She went back to work after lunch, and a police officer was standing at her desk. He said, "Are you Julie Powers?" She answered, "Yes." The policeman said there had been an incident with her child and Mom said, "What hospital?" He said Mineral Area, and she told him to meet her there, she was on her way. She ran out of the bank and drove as fast as she could to the hospital, not knowing which "child" she would find there. She was sure it was Ian - that maybe he fell off the playground equipment at daycare and had broken a bone. She was not prepared for what she found - I was in the ER surrounded by a trauma team, trying to get me stabilized. She called Dad at his work and told him to get to the hospital right away.
The nurses told Mom that I had stopped breathing and that the babysitter wasn't sure if I had been out for 10 or 15 minutes - she administered CPR until the emergency team got to her house. (Thank God she knew infant CPR!)
After some very tense moments, Dad and Mom were told that I would be sent to Cardinal Glennon Children's Hospital on the helicopter. The flight team would be arriving shortly and they should go ahead and drive to the hospital to meet me there. Grandpa and Grandma Ross were out of town, but when they heard the news, they drove to St. Louis, too.
Dad and Mom drove as fast as they could with their lights flashing all the way. (Did you know you could make it to downtown St. Louis from Farmington in 45 minutes?) They even beat the helicopter somehow, so they were there when I arrived. They saw me in the hallway being wheeled by on the gurney - Mom said I was gray - very, very gray. Everyone was very scared for me. Finally I was stabilized enough that I was sent to the ICU.
I had a lot of tests done on me to figure out what happened. What caused me to stop breathing? Well, that is a mystery - the first of many in my life. Mom is convinced that it was due to my body not really liking all the immunizations at my two-month check-up. Four shots was just too much for my body to handle. We will never know for sure.
I spent the next five weeks at the hospital, where I underwent surgery and lots and lots of care. When I finally got to go home, Mom and Dad weren't sure what life would be like. The nurses, doctors, therapists and other hospital staff had told them that 95% of marriages break up when there is a sick child in the house like me. They said they would have nothing to do with that and pretty much, they were in it together, for better or worse. They would take care of me and each other, and Ian, too, and we were a family. That's that.
Well, here it is eight years later. Ian is 10 years old and almost as tall as Mom. We've added another family member (Thor), plus we have a whole lot of "other" family members, too. All my nurses and therapists and teachers who have been a part of my life during this journey. I have been so blessed to have so many wonderful people in my life - all of them dedicating themselves to helping me get better. AND I HAVE GOTTEN BETTER! I know all the prayers have made a difference. I think I have really surprised some of the doctors, to tell you the truth.
I will never know why this "thing" happened to me eight years ago. In the end, I guess it doesn't matter, does it? It happened. I am who I am, and I love my family - all of them. Thank you to EVERYONE who is part of my life. I am a happy, happy girl. I feel love every day. You are all very special to me!
Please leave me a message. I love to hear from you!
Monday, April 30, 2007
Wednesday, April 25, 2007
April 25, 2007
It's 12:30 p.m. (even though the "blog time" won't agree). I'm hanging out with Nurse Sandy today while Mom is at the bank and Dad is in New Jersey. I have a lot to say today, so I hope I can get it all in...
We got some very bad news last night. One of my teachers, Angie James, passed away unexpectedly yesterday. I am so sad that she is gone. I am very sad for her two little kids - our mommies are so important and now they won't have one! I wish I could help them. I don't understand why she died. It doesn't make any sense to me. A lot of things don't make sense to me, though, like why people get sick and have bad things happen to them. It's very hard sometimes to understand God's plan, but I try to leave it in His hands.
Last night, a good friend of mine came to read to me. His name is Jacob. Before I had to stay home for school, Jacob was in my Library class with me at Roosevelt, and he would pick out books for me to take home. He came over with his mom (who is one of my nurses) and read one of his books to me for a whole hour! It was so great having a friend here. I love to hear stories, and he kept reading and reading and reading. I hope he gets to come again sometime.
On Monday I went to the city with Mom and Grandma. I had two doctors' appointments, so we left about an hour early and went shopping at Trader Joe's before my first appointment. I had never been in a grocery store before. It was so different! It was very cold in there because there were so many refrigerator cases. I only cried once. Mom and Grandma got some "cool stuff" that's supposed to be healthy.
I saw my neurologist, and he said I was much more alert and had better oral control this time. He looked deep into my eyes and said everything looked good. He was very happy with me and said I was doing well. No changes to any of my medications, and I don't have to see him again until November.
Then after that appointment, we went to the cemetery where Great-Grandpa and Great-Grandma Berkley are buried. It was a very pretty day. Grandma Ross wanted to take some pictures, so Mom and I went with her. I got to sit outside in the pretty grass under the shade tree for a while.
In the afternoon, I saw the ENT. He said my trach stoma looked "beautiful!" He told Mom that I obviously have extremely good care, which I would have told him if he had asked me... Anyway, he asked Mom if she knew why I had gained so much weight in the last nine months. She told him she thought I was going through a growth spurt or something, but he said, "No, it's because she can breathe now." We were all kind of confused, but he explained that my body was burning so many calories just trying to breathe and stay alive before my tracheostomy, that now that I can breathe easier because that tube is keeping my airway open, my body doesn't have to work as hard. So I've gained weight. (I could have told him that I was just trying to keep up with Mom's weight gain, but she wouldn't have liked that. Anyway, she's trying to get that under control.)
Last weekend's trip to the country was very fun. It was a gorgeous day. I got to see the horses and dogs out there, and Ian got to drive a 4-wheeler for a couple of hours. He was very happy!
Well, I got everything in. Please be sure to leave me a message. Mom will read it to me later...
Love to all!
We got some very bad news last night. One of my teachers, Angie James, passed away unexpectedly yesterday. I am so sad that she is gone. I am very sad for her two little kids - our mommies are so important and now they won't have one! I wish I could help them. I don't understand why she died. It doesn't make any sense to me. A lot of things don't make sense to me, though, like why people get sick and have bad things happen to them. It's very hard sometimes to understand God's plan, but I try to leave it in His hands.
Last night, a good friend of mine came to read to me. His name is Jacob. Before I had to stay home for school, Jacob was in my Library class with me at Roosevelt, and he would pick out books for me to take home. He came over with his mom (who is one of my nurses) and read one of his books to me for a whole hour! It was so great having a friend here. I love to hear stories, and he kept reading and reading and reading. I hope he gets to come again sometime.
On Monday I went to the city with Mom and Grandma. I had two doctors' appointments, so we left about an hour early and went shopping at Trader Joe's before my first appointment. I had never been in a grocery store before. It was so different! It was very cold in there because there were so many refrigerator cases. I only cried once. Mom and Grandma got some "cool stuff" that's supposed to be healthy.
I saw my neurologist, and he said I was much more alert and had better oral control this time. He looked deep into my eyes and said everything looked good. He was very happy with me and said I was doing well. No changes to any of my medications, and I don't have to see him again until November.
Then after that appointment, we went to the cemetery where Great-Grandpa and Great-Grandma Berkley are buried. It was a very pretty day. Grandma Ross wanted to take some pictures, so Mom and I went with her. I got to sit outside in the pretty grass under the shade tree for a while.
In the afternoon, I saw the ENT. He said my trach stoma looked "beautiful!" He told Mom that I obviously have extremely good care, which I would have told him if he had asked me... Anyway, he asked Mom if she knew why I had gained so much weight in the last nine months. She told him she thought I was going through a growth spurt or something, but he said, "No, it's because she can breathe now." We were all kind of confused, but he explained that my body was burning so many calories just trying to breathe and stay alive before my tracheostomy, that now that I can breathe easier because that tube is keeping my airway open, my body doesn't have to work as hard. So I've gained weight. (I could have told him that I was just trying to keep up with Mom's weight gain, but she wouldn't have liked that. Anyway, she's trying to get that under control.)
Last weekend's trip to the country was very fun. It was a gorgeous day. I got to see the horses and dogs out there, and Ian got to drive a 4-wheeler for a couple of hours. He was very happy!
Well, I got everything in. Please be sure to leave me a message. Mom will read it to me later...
Love to all!
Friday, April 20, 2007
April 20, 2007
Did you know that if you leave a comment on my web site, my mom or dad will read it to me? I love to get messages from my friends and family, so please leave me a message. I'm sure it will make me smile!
I've had a very busy week. My teacher has been working with me a lot this week on recognizing pictures. I'm getting very good at it. One of my nurses always makes me choose what I'm going to wear each day (between two outfits). I have to look at the outfit I want to wear. She also makes me choose how I want my hair done - two ponytails or one, braids or no braids, etc. Wow, she makes me work hard!
Daddy got home last night and he gave me kisses while I was asleep. Then he gave me more kisses this morning. I sure do miss him while he's gone during the week at work, but it's so nice to snuggle with him when he's here! Thor really missed Dad this week. He was holding his paw on Dad's arm and just looking at him for the longest time. It was funny. It was like he was saying, "Where have you been this week? Why did you leave me? Don't go anywhere again. Stay here with me."
Tomorrow I get to go to the country again. This time we're going to the Rosener Ponderosa out in the middle of nowhere near Iron Mountain. That's where my great grandma and grandpa lived, and where Grandpa Ross lived when he was a little boy, and where Grandma ross lived, too. She lived on Buford Mountain, and that's where the Roseners live! It's supposed to be warm and sunny, so I think it will be a good day out on the farm!
On Monday, I go to see the neurologist and the ENT doctor. It will be a long afternoon. Mom and Grandma will be taking me. I'll let you know if anything new comes up during those appointments.
I need to go now, I'm very, very sleepy. It's 9:27 p.m. My eyes are closed now. ZZZZZZzzzzz.
I've had a very busy week. My teacher has been working with me a lot this week on recognizing pictures. I'm getting very good at it. One of my nurses always makes me choose what I'm going to wear each day (between two outfits). I have to look at the outfit I want to wear. She also makes me choose how I want my hair done - two ponytails or one, braids or no braids, etc. Wow, she makes me work hard!
Daddy got home last night and he gave me kisses while I was asleep. Then he gave me more kisses this morning. I sure do miss him while he's gone during the week at work, but it's so nice to snuggle with him when he's here! Thor really missed Dad this week. He was holding his paw on Dad's arm and just looking at him for the longest time. It was funny. It was like he was saying, "Where have you been this week? Why did you leave me? Don't go anywhere again. Stay here with me."
Tomorrow I get to go to the country again. This time we're going to the Rosener Ponderosa out in the middle of nowhere near Iron Mountain. That's where my great grandma and grandpa lived, and where Grandpa Ross lived when he was a little boy, and where Grandma ross lived, too. She lived on Buford Mountain, and that's where the Roseners live! It's supposed to be warm and sunny, so I think it will be a good day out on the farm!
On Monday, I go to see the neurologist and the ENT doctor. It will be a long afternoon. Mom and Grandma will be taking me. I'll let you know if anything new comes up during those appointments.
I need to go now, I'm very, very sleepy. It's 9:27 p.m. My eyes are closed now. ZZZZZZzzzzz.
Thursday, April 12, 2007
April 12, 2007
This has been a rough week for me. My dad left at 4:30 Monday morning to fly to Philadelphia, then he drove to New Jersey for his new job. I've missed him a lot this week, but he'll be home late tonight and he promised to give me lots of kisses, even if I'm sound asleep. Since he won't be here until around 11:30 p.m., I really SHOULD be asleep. He calls me a lot when he's gone, so I get to hear his voice. When Mom holds the phone up to my ear, I can usually turn my head a little bit and my eyes look toward the phone. Sometimes I give Dad my big "Elvis" smile and Mom tells him all about it. He loves it when I smile.
Monday evening I started getting all gloppy. I think something bad was in the air because by Tuesday morning, I was coughing up lots of yucky goo, and then I started running a fever. Mom had really itchy eyes and a sore throat Tuesday night, so I guess our allergies were really acting up. I spent most of the day on Tuesday and all of Tuesday night feeling pretty darn blucky, but I started to get better again. Thank goodness!
My big brother has read me a few books this week. Sometimes he really rushes through it because he wants to play his video games or watch TV, but other times he really takes his time and makes it fun and exciting. I love to hear him read because he's so smart. He knows all the words! Someday I hope I'll be able to read, too. It's so fun to learn the stories in a book. My grandma and the nurses read books to me, and it's great! I like the books with pop-ups or other things that move in them. I also like the books that have music and other sounds. They're the best.
My Uncle Scottie is going to be working in Chicago this summer on the new Batman movie. I'm very happy that he'll be closer to me, and I hope that he doesn't have to work all the time. Maybe he'll get to come to Farmington to see me again! I don't get to see my uncles and aunts nearly enough - they all live too far away! Mom tells me that they should all move back to Missouri, but I don't think any of them are interested in doing that.
Uncle Bradley is moving into a new photography studio in May. He's very excited about that because he says he needs a lot more space for his business. He takes really great pictures of people. See my picture over there? He took that. He made me look like a princess!
Uncle Kevin and Aunt Janet came to visit last summer, and they even brought their two dogs, Simba and Buster. That was a lot of fun. I wonder if they'll get to come see me at Christmas time this year?
Aunt Jennifer and Uncle Ryan are getting ready to celebrate my cousin Addison's first birthday (April 18). Addy has to have tubes put in her ears the day after her birthday - not a great way to celebrate, but we all hope that it will help her get rid of her ear infections. Mom told Aunt Jenny not to be worried - I had tubes in my ears, too, and that was the easiest surgery I ever had. In and out in one day! :) Nothing like all those other surgeries I've had!
Dad and Ian got to see Grandma Powers, Uncle Don, Aunt Marie and Cousin Asher last weekend on their way home from the big train adventure. Asher is seven months old now, and I'm waiting to see him in person. He's a cutie pie, and I want to hold him on my lap. I love babies. They always make me smile. I hope they come to visit soon!
If you're wondering what's happening with all my tummy issues, you're not the only one. I'm wondering, too. I guess Mom has been reading about anti-acid medicines and how they keep the body from absorbing calcium. Since I'm already taking calcium because of my soft bones, Mom is worried about starting me up again on the Prevacid. My pharmacist is doing some research on different options. Mom and Dad will talk to the doctors to see what we should do. Of course, it may have been the Prevacid that caused the really, really bad diarrhea. Oh, I don't want to do that again! It was horrible.
Oh, I forgot to mention that I went to the dental office early in the week to get my teeth cleaned. Grandpa wasn't officially back to work yet - but he stopped in to check on me anyway. He's released from the doctor to go back to work now, and he's feeling pretty good. He has started a healthy eating plan and he's already lost weight, so he's moving in the right direction. Not only is he the best dentist in the Midwest, but he's the best grandpa in the world, and I want him to stay healthy for a long, long time!
Well, it's almost 8:30 p.m. and I'm falling asleep. (No, the Posting Time on this Blog does not match up to real time. We don't know why.) I need to go to bed now. Hope everyone stays healthy and happy! Thanks for your continued prayers.
Monday evening I started getting all gloppy. I think something bad was in the air because by Tuesday morning, I was coughing up lots of yucky goo, and then I started running a fever. Mom had really itchy eyes and a sore throat Tuesday night, so I guess our allergies were really acting up. I spent most of the day on Tuesday and all of Tuesday night feeling pretty darn blucky, but I started to get better again. Thank goodness!
My big brother has read me a few books this week. Sometimes he really rushes through it because he wants to play his video games or watch TV, but other times he really takes his time and makes it fun and exciting. I love to hear him read because he's so smart. He knows all the words! Someday I hope I'll be able to read, too. It's so fun to learn the stories in a book. My grandma and the nurses read books to me, and it's great! I like the books with pop-ups or other things that move in them. I also like the books that have music and other sounds. They're the best.
My Uncle Scottie is going to be working in Chicago this summer on the new Batman movie. I'm very happy that he'll be closer to me, and I hope that he doesn't have to work all the time. Maybe he'll get to come to Farmington to see me again! I don't get to see my uncles and aunts nearly enough - they all live too far away! Mom tells me that they should all move back to Missouri, but I don't think any of them are interested in doing that.
Uncle Bradley is moving into a new photography studio in May. He's very excited about that because he says he needs a lot more space for his business. He takes really great pictures of people. See my picture over there? He took that. He made me look like a princess!
Uncle Kevin and Aunt Janet came to visit last summer, and they even brought their two dogs, Simba and Buster. That was a lot of fun. I wonder if they'll get to come see me at Christmas time this year?
Aunt Jennifer and Uncle Ryan are getting ready to celebrate my cousin Addison's first birthday (April 18). Addy has to have tubes put in her ears the day after her birthday - not a great way to celebrate, but we all hope that it will help her get rid of her ear infections. Mom told Aunt Jenny not to be worried - I had tubes in my ears, too, and that was the easiest surgery I ever had. In and out in one day! :) Nothing like all those other surgeries I've had!
Dad and Ian got to see Grandma Powers, Uncle Don, Aunt Marie and Cousin Asher last weekend on their way home from the big train adventure. Asher is seven months old now, and I'm waiting to see him in person. He's a cutie pie, and I want to hold him on my lap. I love babies. They always make me smile. I hope they come to visit soon!
If you're wondering what's happening with all my tummy issues, you're not the only one. I'm wondering, too. I guess Mom has been reading about anti-acid medicines and how they keep the body from absorbing calcium. Since I'm already taking calcium because of my soft bones, Mom is worried about starting me up again on the Prevacid. My pharmacist is doing some research on different options. Mom and Dad will talk to the doctors to see what we should do. Of course, it may have been the Prevacid that caused the really, really bad diarrhea. Oh, I don't want to do that again! It was horrible.
Oh, I forgot to mention that I went to the dental office early in the week to get my teeth cleaned. Grandpa wasn't officially back to work yet - but he stopped in to check on me anyway. He's released from the doctor to go back to work now, and he's feeling pretty good. He has started a healthy eating plan and he's already lost weight, so he's moving in the right direction. Not only is he the best dentist in the Midwest, but he's the best grandpa in the world, and I want him to stay healthy for a long, long time!
Well, it's almost 8:30 p.m. and I'm falling asleep. (No, the Posting Time on this Blog does not match up to real time. We don't know why.) I need to go to bed now. Hope everyone stays healthy and happy! Thanks for your continued prayers.
Friday, April 6, 2007
April 6, 2007
Today was a very early day. I woke up around 3:30 a.m. (Usually I save those really early days for Mom when she's taking care of me overnight, but I thought I'd just throw one in there for the nurse just to mix things up a bit.) Of course, by the time she was finished giving me my bath and doing all my "morning stuff," I was asleep in my chair. Grandma came to take care of me while Mom went to work at the bank.
My friend Sherri was here today. She's my occupational therapist (OT). She was working on my feet a lot today, and she got my foot to really relax. Aaaaaahhhh, that felt so good! My ankles are always very tight, and my feet kind of roll out in a way that makes them feel tight all the time. I have to wear leg braces during the day to help my feet point in the right direction, but my muscles just don't want to do that. My leg braces are pink (of course). My wrist/hand braces are pink, too, with some purple trim. I wear those during the day, too. They're supposed to help me keep my thumbs in the right position. Those darn thumbs of mine always want to pull in tightly into my palm. I wish my body would do what I want it to do.
I sat on Mom's lap while I had my 7:30 p.m. "meal." Then we colored Easter eggs. I fell asleep in my chair, though, and made Mom finish it all by herself. I even made her clean up the mess! Usually Dad and Ian are the ones working feverishly on those Easter eggs, but they're still on their train adventure and won't be home until tomorrow evening. Ian said I could color the eggs without him. Wait 'til he sees how colorful they are!
We're all planning to go to church on Easter and then to Grandma's for Easter dinner. She's going to make Grandpa some very healthy food to eat. My cousin Buddy is coming to eat with us, too. I don't see him very often, but he tells me he always prays for me. Thank you, Buddy!
It's getting late and I can barely get this message on the screen for everyone. It's so hard to type when you're sound asleep! :) Happy Easter to everyone!
My friend Sherri was here today. She's my occupational therapist (OT). She was working on my feet a lot today, and she got my foot to really relax. Aaaaaahhhh, that felt so good! My ankles are always very tight, and my feet kind of roll out in a way that makes them feel tight all the time. I have to wear leg braces during the day to help my feet point in the right direction, but my muscles just don't want to do that. My leg braces are pink (of course). My wrist/hand braces are pink, too, with some purple trim. I wear those during the day, too. They're supposed to help me keep my thumbs in the right position. Those darn thumbs of mine always want to pull in tightly into my palm. I wish my body would do what I want it to do.
I sat on Mom's lap while I had my 7:30 p.m. "meal." Then we colored Easter eggs. I fell asleep in my chair, though, and made Mom finish it all by herself. I even made her clean up the mess! Usually Dad and Ian are the ones working feverishly on those Easter eggs, but they're still on their train adventure and won't be home until tomorrow evening. Ian said I could color the eggs without him. Wait 'til he sees how colorful they are!
We're all planning to go to church on Easter and then to Grandma's for Easter dinner. She's going to make Grandpa some very healthy food to eat. My cousin Buddy is coming to eat with us, too. I don't see him very often, but he tells me he always prays for me. Thank you, Buddy!
It's getting late and I can barely get this message on the screen for everyone. It's so hard to type when you're sound asleep! :) Happy Easter to everyone!
Monday, April 2, 2007
April 2, 2008
Well, today it's not about me. It's about Grandpa. On Saturday, he had a mild heart attack and had to go to Missouri Baptist Hospital in St. Louis. I was very worried about him. He had two stents put into his heart in 2003, and now this. He ended up having another stent put in. Mom and Dad saw the picture of the artery, and they said it was pretty much completely closed - but it's open now, (and the other two stents are still clear). So the blood is pumping the right way now - flowing smoothly through his body. He gets to come home tomorrow, and I think it will be the beginning of a whole new era in my family. I think (hope and pray) that Grandpa (and Grandma and Mom and Dad and Ian) will start eating very healthy food all the time. They all make sure that I have a very healthy diet, so why not them? It's time for some major changes around here!
(Oh - a big THANK YOU to nurse Sandy for switching days with Grandma this week.)
After they left the hospital, Dad and Ian stayed in St. Louis. They are going on their big train adventure tomorrow - leaving on the Amtrak at 6:30 a.m. Ian has been planning this trip for three years, and two different summers he and Dad had it all planned out, I ended up in the hospital. I didn't mean to mess up Ian's plans, but it just worked out that way. I really hope he has a great time on this trip. Mom and I are going to have some "girl time" this week while the boys are away. (Well, we won't count Thor - he's a boy dog - and he's staying here with us to be our watch dog.)
My tummy is doing a little better now, so I'm happy about that. Plus we had another successful trach change yesterday. Whew! Mom did this one, with Dad and nurse Diane standing by. It went smoothly. I could tell Mom was nervous. She counted to three and held her breathe when she pulled out the old trach and inserted the new one. Luckily it worked just fine the first time - no spasms, no closing of the stoma, no turning blue. Thank you, God, for watching over me.
It's almost 10 o'clock, so I'd better be getting to bed. One of my teachers will be here at 7:45 a.m. to make me work, so I need to get some good rest. I've really been doing well with my picture recognition. My teachers hold up two pictures and I have to look at the ones they tell me to look at - usually they're of people such as Dad or Mom, Grandma or Grandpa, Ian or Thor, etc. (Okay, Thor's not a person, but he's part of the family, right?) Today I was especially quick to recognize everyone. Nurse Diane had a great idea for a special board that will help me learn to communicate learning how to point a laser light onto a picture. Dad is going to figure out a way to build it. I'm not sure when he's going to do it, though, because he starts his new job next Monday, and he'll be gone Monday through Thursday every week. I sure am going to miss him around here!
Sweet dreams, everyone. I'm going to bed.
(Oh - a big THANK YOU to nurse Sandy for switching days with Grandma this week.)
After they left the hospital, Dad and Ian stayed in St. Louis. They are going on their big train adventure tomorrow - leaving on the Amtrak at 6:30 a.m. Ian has been planning this trip for three years, and two different summers he and Dad had it all planned out, I ended up in the hospital. I didn't mean to mess up Ian's plans, but it just worked out that way. I really hope he has a great time on this trip. Mom and I are going to have some "girl time" this week while the boys are away. (Well, we won't count Thor - he's a boy dog - and he's staying here with us to be our watch dog.)
My tummy is doing a little better now, so I'm happy about that. Plus we had another successful trach change yesterday. Whew! Mom did this one, with Dad and nurse Diane standing by. It went smoothly. I could tell Mom was nervous. She counted to three and held her breathe when she pulled out the old trach and inserted the new one. Luckily it worked just fine the first time - no spasms, no closing of the stoma, no turning blue. Thank you, God, for watching over me.
It's almost 10 o'clock, so I'd better be getting to bed. One of my teachers will be here at 7:45 a.m. to make me work, so I need to get some good rest. I've really been doing well with my picture recognition. My teachers hold up two pictures and I have to look at the ones they tell me to look at - usually they're of people such as Dad or Mom, Grandma or Grandpa, Ian or Thor, etc. (Okay, Thor's not a person, but he's part of the family, right?) Today I was especially quick to recognize everyone. Nurse Diane had a great idea for a special board that will help me learn to communicate learning how to point a laser light onto a picture. Dad is going to figure out a way to build it. I'm not sure when he's going to do it, though, because he starts his new job next Monday, and he'll be gone Monday through Thursday every week. I sure am going to miss him around here!
Sweet dreams, everyone. I'm going to bed.
Wednesday, March 28, 2007
March 28, 2007
I saw my orthopedic surgeon today in St. Louis. Daddy and Grandma took me to see her. She's a very nice doctor, and I like her a lot. She has worked on my hips on my heels in the past. My bones are so soft (I have osteopenia), that we're trying to avoid future surgeries. My bones just don't heal very well, and my left hip is kind of "squishy," which means that it isn't strong enough to be "normal." I'm taking calcium to help build up my bones, though, so maybe that will help. I kind of sit crooked in my wheelchair, and my mom calls me her little "question mark" because I usually find a way to bend my body to the side to form a question mark, even in my sleep. Yes, I have some scoliosis (curvature of the spine). This is very common among kids like me - the kids who don't walk around and put all that body weight on our hips and legs. I guess gravity just pulls us down at a different angle than all you "up-rights" out there. My scoliosis curve is at about 37% now - a little worse than my last check-up, but not drastically different. Mom and Dad really don't want to have anybody cutting on my back or inserting any rods because I have enough problems already, so I guess we'll all just have to pray that it doesn't get much worse.
My nurse Sandy will be back from vacation tomorrow. While she was off in the sunshine of Corpus Christi, my Grandma and I played a lot and read lots and lots of books. Grandma likes to brush my hair - a lot. Mom calls me "Sister Golden Hair." Grandma says my hair is just like spun silk. I hope to grow it out long enough one day that I can donate some of it to a girl who lost her hair with cancer treatments. (If you have long enough hair, you can donate it to Locks of Love and give a kid a nice head of hair.) Mom says my hair has to be long enough that she can still make a pony tail after it's cut off. Hmmm. I think it will be a while before it's that long.
Love to you all! Thank you for your prayers. Keep 'em heading straight up to heaven, and one day God just may snap those giant fingers to make a miracle happen!
My nurse Sandy will be back from vacation tomorrow. While she was off in the sunshine of Corpus Christi, my Grandma and I played a lot and read lots and lots of books. Grandma likes to brush my hair - a lot. Mom calls me "Sister Golden Hair." Grandma says my hair is just like spun silk. I hope to grow it out long enough one day that I can donate some of it to a girl who lost her hair with cancer treatments. (If you have long enough hair, you can donate it to Locks of Love and give a kid a nice head of hair.) Mom says my hair has to be long enough that she can still make a pony tail after it's cut off. Hmmm. I think it will be a while before it's that long.
Love to you all! Thank you for your prayers. Keep 'em heading straight up to heaven, and one day God just may snap those giant fingers to make a miracle happen!
Subscribe to:
Posts (Atom)
