On Friday, November 16, 2007, staff and students from Roosevelt Elementary School in Farmington honored Emma's memory by dedicating a beautiful garden in her name. Before the garden was created, there was a lonely tree standing in the middle of the courtyard outside the cafeteria. Now there is a lovely garden with a bench, a birdfeeder, three rose bushes, an angel statue and a sweet wind chime hanging in the tree. The sign in the garden is pink and purple.
The dedication ceremony included remarks by Paige Reid, Susie Rohrer, Kathy Epps, Dawn Eaton and a group of Emma's former classmates (from library and music time). A wind chime was presented to Corey, Julie and Ian to hang in the tree. (It looks a lot like Emma!)
Pink and white balloons were sent flying into the bright blue sky.
The garden will serve as a constant reminder that Emma was here - and a very important person at Roosevelt School. She touched many lives - teachers, therapists, administrators and students.
Now the lonely tree is not alone anymore - and Emma's memory will live on...
(Pictures at the bottom of this page.)
Sunday, November 18, 2007
Thursday, July 26, 2007
Emma Christine Powers: Obituary
Emma Christine Powers of Farmington, Missouri, passed away on Thursday, July 26, 2007 at Cardinal Glennon Children’s Medical Center in St. Louis, at the age of 8-1/2 years. She was born on January 22, 1999, in Farmington, the beautiful, perfect daughter of Corey and Julie (Ross) Powers and sister of Ian Scot.
Emma suffered an acute life threatening event at the age of three months, which left her neurologically devastated. For more than eight years, Emma brought an immense amount of love and happiness to her family, friends, nurses, therapists, teachers, doctors, and everyone who knew her. Her mission from God was to teach people how to be patient, how to love more deeply, and how to appreciate every breath and every waking moment. Emma was a brave girl who underwent numerous surgical procedures with determination. Until the end, she fought hard to keep teaching her lessons.
Emma’s favorite times were swinging in her swing in the back yard, having books read to her, taking a stroll in her wheelchair, snuggling with her mom or dad in the rocking chair, having her hair brushed, getting kisses from her big brother, and getting licks on her hands from her dog, Thor.
Emma’s early departure from this life leaves an enormous hole in many people’s lives, especially those caregivers and therapists who have worked with her for years. For the first time ever, “Princess Emma” is running and jumping, chasing butterflies and picking flowers in heaven. She is free from the confines of her wheelchair, and she is dancing with Jesus and all His angels. Her silky golden hair is blowing in the wind as she runs at top speed.
Emma is survived by her parents, Corey and Julie; her brother, Ian; her grandparents, Douglas and Pamela (Berkley) Ross of Farmington and Sylvia (Gaw) Powers of Independence, Mo; her uncles and aunts: Pam (Powers) and Roger Hall of Virginia; Leslie Powers of Colorado; Kevin and Janet Ross of California; Don and Marie Powers of Independence, Mo.; Bradley Ross of California; Scott Ross of California; Jennifer (Ross) and Ryan Roberts of Mississippi; and her cousins: Kerry, Lindsay, Darren, Stephen, Matthew, Rachel, Sarah, Addison, Asher, Audra, Kaitlyn and Joel. She is also survived by hundreds of family members and friends. She was preceded in death by grandfather Buddy F. Powers.
Visitation is scheduled for Saturday, July 28 at Cozean Memorial Chapel from 5 to 8 p.m. Visitation will resume on Sunday, July 29 from 10 a.m. to 12 p.m. A funeral service will be held at St. Paul Lutheran Church in Farmington on Sunday, July 29 at 1 p.m. with Pastor Merlen Wegener of Lafayette, Indiana officiating. Burial will follow at St. Paul Lutheran Cemetery in Farmington. In lieu of flowers and plants, memorials may be directed to the St. Paul Lutheran School Building Fund or the Ronald McDonald House. Confirmation of arrangements, obituary and online condolences at http://www.cozeanfuneralhome.com/.
Emma suffered an acute life threatening event at the age of three months, which left her neurologically devastated. For more than eight years, Emma brought an immense amount of love and happiness to her family, friends, nurses, therapists, teachers, doctors, and everyone who knew her. Her mission from God was to teach people how to be patient, how to love more deeply, and how to appreciate every breath and every waking moment. Emma was a brave girl who underwent numerous surgical procedures with determination. Until the end, she fought hard to keep teaching her lessons.
Emma’s favorite times were swinging in her swing in the back yard, having books read to her, taking a stroll in her wheelchair, snuggling with her mom or dad in the rocking chair, having her hair brushed, getting kisses from her big brother, and getting licks on her hands from her dog, Thor.
Emma’s early departure from this life leaves an enormous hole in many people’s lives, especially those caregivers and therapists who have worked with her for years. For the first time ever, “Princess Emma” is running and jumping, chasing butterflies and picking flowers in heaven. She is free from the confines of her wheelchair, and she is dancing with Jesus and all His angels. Her silky golden hair is blowing in the wind as she runs at top speed.
Emma is survived by her parents, Corey and Julie; her brother, Ian; her grandparents, Douglas and Pamela (Berkley) Ross of Farmington and Sylvia (Gaw) Powers of Independence, Mo; her uncles and aunts: Pam (Powers) and Roger Hall of Virginia; Leslie Powers of Colorado; Kevin and Janet Ross of California; Don and Marie Powers of Independence, Mo.; Bradley Ross of California; Scott Ross of California; Jennifer (Ross) and Ryan Roberts of Mississippi; and her cousins: Kerry, Lindsay, Darren, Stephen, Matthew, Rachel, Sarah, Addison, Asher, Audra, Kaitlyn and Joel. She is also survived by hundreds of family members and friends. She was preceded in death by grandfather Buddy F. Powers.
Visitation is scheduled for Saturday, July 28 at Cozean Memorial Chapel from 5 to 8 p.m. Visitation will resume on Sunday, July 29 from 10 a.m. to 12 p.m. A funeral service will be held at St. Paul Lutheran Church in Farmington on Sunday, July 29 at 1 p.m. with Pastor Merlen Wegener of Lafayette, Indiana officiating. Burial will follow at St. Paul Lutheran Cemetery in Farmington. In lieu of flowers and plants, memorials may be directed to the St. Paul Lutheran School Building Fund or the Ronald McDonald House. Confirmation of arrangements, obituary and online condolences at http://www.cozeanfuneralhome.com/.
Thursday, July 26, 2007
Emma went to heaven today at 10:37 a.m. at Cardinal Glennon Children's Medical Center. She was a very brave princess. We all miss her so much!
Tuesday, July 24, 2007
Tuesday, July 24, 2007
My Dad has this weird saying. He says, "And the hits just keep on coming!" I don't think he's talking about number one songs on the radio, either. Whenever he says it, he and Mom look at each other with a look in their eyes that I can't explain, but it sure seems like some of it revolves around me.
Why am I talking about "hits" today? Well, today was a terrifying, horrible, mysterious, miraculous day. Yes, it really was all of these things, and in order to share it with you, I'm going to get a bit graphic. So if you're feeling a bit weak in the stomach or you really don't want to hear about "bad stuff," I suggest skipping this update and catching me on the next one. Mom says it's good therapy, though, to get everything off my chest, so I'm going to tell you straight out what happened to me today.
At 4 o'clock this morning, I started getting kind of gurgly, like I do many times while I'm sleeping. Nurse Diane got up to suction me, and when she had the suction tube all ready, I coughed as she was pulling my Thermovent (the filter at the end of my trach tube) off. I coughed up bright red blood, and it filled up the filter. The nurse started suctioning me, but she couldn't get the blood out fast enough, and she had no idea where it was coming from. She got the next-size-up catheter kit and called Mom on the intercom. Mom teleported into the bedroom, and when she got in the room, she was very confused. She said, "What's going on?! Why is she bleeding?!" The nurse was suctioning me and threw the phone to Mom and said, "Call 9-1-1! It's not stopping!" So she did immediately.
Mom said that I looked like a gunshot victim - there was so much blood all over my chest, soaked through my nightgown. The suction tube was full of blood. The suction canister was filling up with blood. There were blood splats on my blanket, my stuffed animal friends who sleep with me, the wall, and everywhere - and it just kept coming out. Mom was terrified that I was "bleeding out." (The doctors told Mom and Dad that because my anatomy is so weird, that my inominate artery (did I spell that correctly?) - anyway, it's a very important artery - crosses my trachea right below the trach tube. That rigid tube could at some point wear down the lining between the trach and the artery, and then...well, let's just say that it would be bad, very bad.) Mom said that's what was flashing in her mind. Luckily, I was asleep during all of this, so I didn't have that panic-stricken look on my face that makes Mom even more worried. Mom kept 9-1-1 on the phone and used the nurse's cell phone to call Grandma and Grandpa. She told Grandpa she needed them NOW! They must have teleported, too, because they got here very fast. She also called Dad at his hotel in New Jersey.
The nurse moved me to the other bed so that she and Mom could both work on me at the same time. Then she deflated my "cuff" that helps seal off the rest of the space around my trach tube. Within 15 seconds, the bleeding stopped and the blood started clotting. Mom got the oxygen and the ambu bag, and the nurse started bagging me. The ambulance and fire department arrived, and that's when I woke up. Unfortunately, so did Ian. Mom told him to go with Grandma and Grandpa. I don't think he saw all the blood because he was half asleep, so that's very good. I would have scared him a lot!
Mom rode in the ambulance with me to the hospital here in Farmington, and she asked for a transport to Cardinal Glennon immediately. The nurse kept bagging me while Mom did all the paperwork stuff, and after a while, it got harder and harder to bag me. The nurse said she thought my trach tube was clogged up with dried blood and that we needed to change the trach tube. Mom got nervous about that because she was afraid that if we got the old one out, I would start with the weird spasms or start bleeding again, and we wouldn't be able to get the new one in. Then I would be in a bigger mess.
When they pulled the old one out, there was a long string of thick, gooey blood hanging on the end of it, and the tube itself was completely filled with dried blood. I'm really not sure how I was able to get any air into my lungs! But the new one was clear, clear, clear, and I could tell right away that I was breathing better. Mom had to run hot water through the old tube and rub it between her fingers to break up the clots. (Don't worry - she always sterilizes the old one again before it trades places.)
The ARCH helicopter couldn't fly to Farmington because it was too foggy in St. Louis. That meant that the transport team from the hospital couldn't come. So they called Air Evac to see if they could fly. They arrived at the hospital a little while later, and I got to take my third helicopter trip to St. Louis. This time, though, I was awake for the ride. The other two times, I was unconscious.
The Air Evac helicopters are very small, so Mom couldn't fly with me. She and Grandma drove to St. Louis and got there about 15 minutes after I did. (I think Grandma was driving way too fast, but Mom said she would pay for her ticket if she would just put on her hazard lights and floor it!) It was rush-hour traffic, but somehow they made it pretty darn quickly.
I was hanging out in the emergency room when they arrived. I was on a humidified trach collar and oxygen, but other than that, I was back to my "normal self." Mom was amazed. Grandma was amazed. I was amazed. I got a chest x-ray and the ENT team came to scope my airway. They tried to find anything that could have caused the bleeding. The only thing they found was a tiny spot at the top of my trachea near the stoma (the hole in my throat). They said that that could have been where a granuloma (again, the spelling might not be right here), broke off and broke a blood vessel. That could have caused all the bleeding, but at that time, there was not a single bit of blood anywhere in my throat! It was a miracle. Seriously.
Grandpa was already canceling patients for the day because he thought he would be needed in St. Louis, but Mom told him to stop - he could stay at work and fix teeth because I was doing so well, it was unbelievable. He should just stay in Farmington. (Ian went to his friend's house for the day.)
My chest x-ray showed that part of my left lobe either had partially collapsed OR it had some pneuomonia in it (which could have been some of the blood that didn't get suctioned out at the house). But I didn't have any fever. My blood count was good. My blood gas was good. I was not upset. I was breathing well. They weaned me down to room air, and I was still doing well. So, I was going to get to go home!
Since I was doing so well, Mom called the orthotist (Barb) to see if she was in the hospital today and if she happened to have my new leg braces with her. Guess what. She was and she did, so she came to see me. I got to try on my new "legs." They're pink (of course) and they have "girls with attitude" all over them. No, they don't say that all over them - there are pictures of girls on the braces. They're GREAT! I picked them out myself when I was in the hospital back in June. Barb is going to make a few adjustments to them, and we'll pick them up on Friday when I go back up for my other appointments.
Dad made it to the hospital right before Grandma got back with the van and all the stuff I need when I go on a trip. So I was ready to leave. I got home this evening, and other than being very tired, I was (and am) feeling pretty good. If you walked into my house right now (8:26 p.m.), you would see me looking like I always do and you wouldn't know I had coughed up 100 cc (almost a half pint) of blood just 16 hours ago.
I'll be the first to admit it. I'm a weirdo. I have these weird, mysterious things that happen all the time. Jesus just keeps reaching down and grabbing me and saying, "Not yet, little one. Not yet. You stay there for now. You still have a lot to teach people." So I do what he says, and I snap back into life - with all the gusto I can muster. And each time something weird happens to me, I truly believe I come out of it more lovable and snuggable than before! Just ask Mom and Dad!
So please keep praying those prayers for me. I know God is listening. I can hear Him, and I can hear all the angels flying around me, too.
It's been a long, hard day, so I'm going to go to bed now. Nurse Diane is back. (Wow! I didn't scare her off! I'm so glad!) She's going to get me all ready for bed, with fresh, clean pajamas. Love to you all!
Why am I talking about "hits" today? Well, today was a terrifying, horrible, mysterious, miraculous day. Yes, it really was all of these things, and in order to share it with you, I'm going to get a bit graphic. So if you're feeling a bit weak in the stomach or you really don't want to hear about "bad stuff," I suggest skipping this update and catching me on the next one. Mom says it's good therapy, though, to get everything off my chest, so I'm going to tell you straight out what happened to me today.
At 4 o'clock this morning, I started getting kind of gurgly, like I do many times while I'm sleeping. Nurse Diane got up to suction me, and when she had the suction tube all ready, I coughed as she was pulling my Thermovent (the filter at the end of my trach tube) off. I coughed up bright red blood, and it filled up the filter. The nurse started suctioning me, but she couldn't get the blood out fast enough, and she had no idea where it was coming from. She got the next-size-up catheter kit and called Mom on the intercom. Mom teleported into the bedroom, and when she got in the room, she was very confused. She said, "What's going on?! Why is she bleeding?!" The nurse was suctioning me and threw the phone to Mom and said, "Call 9-1-1! It's not stopping!" So she did immediately.
Mom said that I looked like a gunshot victim - there was so much blood all over my chest, soaked through my nightgown. The suction tube was full of blood. The suction canister was filling up with blood. There were blood splats on my blanket, my stuffed animal friends who sleep with me, the wall, and everywhere - and it just kept coming out. Mom was terrified that I was "bleeding out." (The doctors told Mom and Dad that because my anatomy is so weird, that my inominate artery (did I spell that correctly?) - anyway, it's a very important artery - crosses my trachea right below the trach tube. That rigid tube could at some point wear down the lining between the trach and the artery, and then...well, let's just say that it would be bad, very bad.) Mom said that's what was flashing in her mind. Luckily, I was asleep during all of this, so I didn't have that panic-stricken look on my face that makes Mom even more worried. Mom kept 9-1-1 on the phone and used the nurse's cell phone to call Grandma and Grandpa. She told Grandpa she needed them NOW! They must have teleported, too, because they got here very fast. She also called Dad at his hotel in New Jersey.
The nurse moved me to the other bed so that she and Mom could both work on me at the same time. Then she deflated my "cuff" that helps seal off the rest of the space around my trach tube. Within 15 seconds, the bleeding stopped and the blood started clotting. Mom got the oxygen and the ambu bag, and the nurse started bagging me. The ambulance and fire department arrived, and that's when I woke up. Unfortunately, so did Ian. Mom told him to go with Grandma and Grandpa. I don't think he saw all the blood because he was half asleep, so that's very good. I would have scared him a lot!
Mom rode in the ambulance with me to the hospital here in Farmington, and she asked for a transport to Cardinal Glennon immediately. The nurse kept bagging me while Mom did all the paperwork stuff, and after a while, it got harder and harder to bag me. The nurse said she thought my trach tube was clogged up with dried blood and that we needed to change the trach tube. Mom got nervous about that because she was afraid that if we got the old one out, I would start with the weird spasms or start bleeding again, and we wouldn't be able to get the new one in. Then I would be in a bigger mess.
When they pulled the old one out, there was a long string of thick, gooey blood hanging on the end of it, and the tube itself was completely filled with dried blood. I'm really not sure how I was able to get any air into my lungs! But the new one was clear, clear, clear, and I could tell right away that I was breathing better. Mom had to run hot water through the old tube and rub it between her fingers to break up the clots. (Don't worry - she always sterilizes the old one again before it trades places.)
The ARCH helicopter couldn't fly to Farmington because it was too foggy in St. Louis. That meant that the transport team from the hospital couldn't come. So they called Air Evac to see if they could fly. They arrived at the hospital a little while later, and I got to take my third helicopter trip to St. Louis. This time, though, I was awake for the ride. The other two times, I was unconscious.
The Air Evac helicopters are very small, so Mom couldn't fly with me. She and Grandma drove to St. Louis and got there about 15 minutes after I did. (I think Grandma was driving way too fast, but Mom said she would pay for her ticket if she would just put on her hazard lights and floor it!) It was rush-hour traffic, but somehow they made it pretty darn quickly.
I was hanging out in the emergency room when they arrived. I was on a humidified trach collar and oxygen, but other than that, I was back to my "normal self." Mom was amazed. Grandma was amazed. I was amazed. I got a chest x-ray and the ENT team came to scope my airway. They tried to find anything that could have caused the bleeding. The only thing they found was a tiny spot at the top of my trachea near the stoma (the hole in my throat). They said that that could have been where a granuloma (again, the spelling might not be right here), broke off and broke a blood vessel. That could have caused all the bleeding, but at that time, there was not a single bit of blood anywhere in my throat! It was a miracle. Seriously.
Grandpa was already canceling patients for the day because he thought he would be needed in St. Louis, but Mom told him to stop - he could stay at work and fix teeth because I was doing so well, it was unbelievable. He should just stay in Farmington. (Ian went to his friend's house for the day.)
My chest x-ray showed that part of my left lobe either had partially collapsed OR it had some pneuomonia in it (which could have been some of the blood that didn't get suctioned out at the house). But I didn't have any fever. My blood count was good. My blood gas was good. I was not upset. I was breathing well. They weaned me down to room air, and I was still doing well. So, I was going to get to go home!
Since I was doing so well, Mom called the orthotist (Barb) to see if she was in the hospital today and if she happened to have my new leg braces with her. Guess what. She was and she did, so she came to see me. I got to try on my new "legs." They're pink (of course) and they have "girls with attitude" all over them. No, they don't say that all over them - there are pictures of girls on the braces. They're GREAT! I picked them out myself when I was in the hospital back in June. Barb is going to make a few adjustments to them, and we'll pick them up on Friday when I go back up for my other appointments.
Dad made it to the hospital right before Grandma got back with the van and all the stuff I need when I go on a trip. So I was ready to leave. I got home this evening, and other than being very tired, I was (and am) feeling pretty good. If you walked into my house right now (8:26 p.m.), you would see me looking like I always do and you wouldn't know I had coughed up 100 cc (almost a half pint) of blood just 16 hours ago.
I'll be the first to admit it. I'm a weirdo. I have these weird, mysterious things that happen all the time. Jesus just keeps reaching down and grabbing me and saying, "Not yet, little one. Not yet. You stay there for now. You still have a lot to teach people." So I do what he says, and I snap back into life - with all the gusto I can muster. And each time something weird happens to me, I truly believe I come out of it more lovable and snuggable than before! Just ask Mom and Dad!
So please keep praying those prayers for me. I know God is listening. I can hear Him, and I can hear all the angels flying around me, too.
It's been a long, hard day, so I'm going to go to bed now. Nurse Diane is back. (Wow! I didn't scare her off! I'm so glad!) She's going to get me all ready for bed, with fresh, clean pajamas. Love to you all!
Sunday, July 22, 2007
Sunday, July 22, 2007
It has been a beautiful, perfect weekend. The weather has been so perfect that I got to outside yesterday for a long time with Nurse Sandy. I got to swing and swing and swing. We also took a stroll around our neighborhood "circle," and we sat outside in the yard looking at birds and people driving by. Today, I did it all over again! It wasn't quite as sunny and bright today, but the temperature was just right. I really love to go outside.
Pretty soon, I'll be able to go straight out the back door onto a deck and roll down a new ramp right into the yard. Mom and Dad wanted to build a deck out back a couple of years ago, but I went into the hospital. Then they started talking about it again last year, and I went into the hospital again. This year, I went into the hospital AGAIN, but they said, "Enough is enough - we're getting that deck built no matter what. Emma has to have access to the backyard without having to go through the garage and all the way around the house!" (Sometimes it's muddy over there on the side of the house, and it can get messy rolling through that part of the yard.)
So, now the project is really happening. Nurse Nicole's dad, Mr. Cox, is going to build it for us. He already has the area strung up to show where the railings will go and how long the ramp will be. When it's done, I'll go straight out the back door (without any steps or anything). I'll be able to sit under the roof there if it's raining, or I can roll down the ramp and over to my swing - lickity split! Plus, Dad is going to have some new doors put in - some pretty, sliding glass doors that work very smoothly.
I don't know what a Home Equity Loan is, but Mom and Dad said it's a wonderful thing. They've never had one before, but First State Community Bank is fixing them up so they can pay for this wonderful new deck for me! Mom said they have a whole list of projects to do at the house, so this is just the beginning. (Of course, it IS the most important project, because, well, it's all about ME. But Ian seems to think it will be cool, too!)
Yesterday evening, Mom and Dad and Ian and I strolled over to Grandma and Grandpa's house for dinner. Grandma made a bunch of food - some of her specialties. I didn't get to eat anything, of course, but it sure smelled good! (Mom says that if anybody out there wants to make mashed potatoes, you must remember to turn the burner on so the potatoes can actually cook. I guess that's why Grandma's potatoes weren't cooking yesterday! Sorry, Grandma, I had to tell on you. It was just too funny.)
My good friend, Sherri, told Mom last night that Baby Grant is doing very, very well now. He turned a corner last week, and he is recovering very well from his surgery. He still has a staph infection, but the nurses and doctors are sure it will go away with the special medicine he's getting. Grant's brother, Cullen, is also doing very well. So that's wonderful news!!! They were born six weeks ago, and they still have something like eight more weeks to go before they were SUPPOSED to be born. They were just too impatient and wanted to get out too quickly.
I'm very excited because I get to go see Miss Kelly this afternoon. She came home from the rehab center last weekend, and now that she's settled in a bit, I get to go see her. She was a wonderful teacher for me, and I miss her so much. I hate that she had that terrible accident. She has to be in a wheelchair now, too. It's really sad for her because she's not used to that, but I am. I've been rolling around in my special chair for so long, that it's part of me. Miss Kelly doesn't really belong in a wheelchair, though, so she's going to work really hard to get those legs and feet working again.
I have another bit of very exciting news. Yesterday in the mail, I got my "wish packet" from the Make A Wish Foundation. My doctor at the hospital and the very nice Footprints lady, Sister Judy, turned in my information to Make A Wish. They want me to do something very, very special - just for me. So now it's official - I have been qualified for the program, and my "wish-granters" are going to come to my house to meet with me and my family to see what my wish is. Mom and Dad have to fill out some papers and stuff first, but they're good at that, so it shouldn't take too long to have those "wish-granters" here at the house. Now I have to think, think, think. What is my very special wish? I think I know, but I'm going to keep it a secret until after I talk to the "wish-granters." They might have some really good ideas that I'm not thinking of. When I've made my final decision, and the "wish-granters" tell me it's okay, then I'll let you know what I'll be doing. The sky is the limit right now, so I'm keeping all my options open. Princesses have to do that, you know.
I got to see my friends Dena, Braden, Breslin and Brenna Mae this weekend. They stopped in two different times for very quick visits. Today, they came by because Mom needed Dena's physical therapy expertise. She popped her back yesterday and it really hurt. She couldn't lift me, and she had trouble turning and bending (so Grandma stayed overnight to take care of me-of course, I slept very well for Grandma). Her back was feeling better today, but Dena showed her some good exercises to maybe keep her from doing it again. Mom says she knows she's really old now, because things like this don't happen to "young people."
Next Saturday, we're going to the Roses' house for a big fireworks show. We didn't get to have our usual Fourth of July celebration this year, so we're having a "28th of July" celebration. I get to go out to the country again and see the animals, all those trees, the fields, etc. Then when it gets dark, I'll sit on the deck with the kids while Dad and Doug put on the big "show." While I'm watching the fireworks, I'll probably be thinking about Grandma and Grandpa. They're leaving for Alaska on Friday, so they'll be way up north doing something exciting on their trip. I'm going to miss them!!!
Speaking of Friday, I'll be going to St. Louis on Friday to see some of my doctors. I get to see my very nice pulmonologist. He's going to check on my breathing. I'll also see the G.I. doctor. She wants to see how my new formula is working and how it's going through my system. It was working really great for a while, but then I started leaking again around my button and my skin was getting red again. It has been much better for a couple of days, so who knows? By the time of my appointment on Friday, it will probably look perfect. Mom says it's like a car repair shop. The problem magically goes away when you take the car in to get fixed. I wonder what kind of car she thinks I am. (I think I'm a 1967 Red Stingray Corvette because that is a COOL car!) I'm supposed to get my new leg braces on Friday, too, so I'll get to see Barb, the orthotist. It's going to be a busy day.
I think that just about does it for the wrap-up today. I hope everyone has a wonderful week! I think it's going to be a nice week, so we should all go outside every day!
Pretty soon, I'll be able to go straight out the back door onto a deck and roll down a new ramp right into the yard. Mom and Dad wanted to build a deck out back a couple of years ago, but I went into the hospital. Then they started talking about it again last year, and I went into the hospital again. This year, I went into the hospital AGAIN, but they said, "Enough is enough - we're getting that deck built no matter what. Emma has to have access to the backyard without having to go through the garage and all the way around the house!" (Sometimes it's muddy over there on the side of the house, and it can get messy rolling through that part of the yard.)
So, now the project is really happening. Nurse Nicole's dad, Mr. Cox, is going to build it for us. He already has the area strung up to show where the railings will go and how long the ramp will be. When it's done, I'll go straight out the back door (without any steps or anything). I'll be able to sit under the roof there if it's raining, or I can roll down the ramp and over to my swing - lickity split! Plus, Dad is going to have some new doors put in - some pretty, sliding glass doors that work very smoothly.
I don't know what a Home Equity Loan is, but Mom and Dad said it's a wonderful thing. They've never had one before, but First State Community Bank is fixing them up so they can pay for this wonderful new deck for me! Mom said they have a whole list of projects to do at the house, so this is just the beginning. (Of course, it IS the most important project, because, well, it's all about ME. But Ian seems to think it will be cool, too!)
Yesterday evening, Mom and Dad and Ian and I strolled over to Grandma and Grandpa's house for dinner. Grandma made a bunch of food - some of her specialties. I didn't get to eat anything, of course, but it sure smelled good! (Mom says that if anybody out there wants to make mashed potatoes, you must remember to turn the burner on so the potatoes can actually cook. I guess that's why Grandma's potatoes weren't cooking yesterday! Sorry, Grandma, I had to tell on you. It was just too funny.)
My good friend, Sherri, told Mom last night that Baby Grant is doing very, very well now. He turned a corner last week, and he is recovering very well from his surgery. He still has a staph infection, but the nurses and doctors are sure it will go away with the special medicine he's getting. Grant's brother, Cullen, is also doing very well. So that's wonderful news!!! They were born six weeks ago, and they still have something like eight more weeks to go before they were SUPPOSED to be born. They were just too impatient and wanted to get out too quickly.
I'm very excited because I get to go see Miss Kelly this afternoon. She came home from the rehab center last weekend, and now that she's settled in a bit, I get to go see her. She was a wonderful teacher for me, and I miss her so much. I hate that she had that terrible accident. She has to be in a wheelchair now, too. It's really sad for her because she's not used to that, but I am. I've been rolling around in my special chair for so long, that it's part of me. Miss Kelly doesn't really belong in a wheelchair, though, so she's going to work really hard to get those legs and feet working again.
I have another bit of very exciting news. Yesterday in the mail, I got my "wish packet" from the Make A Wish Foundation. My doctor at the hospital and the very nice Footprints lady, Sister Judy, turned in my information to Make A Wish. They want me to do something very, very special - just for me. So now it's official - I have been qualified for the program, and my "wish-granters" are going to come to my house to meet with me and my family to see what my wish is. Mom and Dad have to fill out some papers and stuff first, but they're good at that, so it shouldn't take too long to have those "wish-granters" here at the house. Now I have to think, think, think. What is my very special wish? I think I know, but I'm going to keep it a secret until after I talk to the "wish-granters." They might have some really good ideas that I'm not thinking of. When I've made my final decision, and the "wish-granters" tell me it's okay, then I'll let you know what I'll be doing. The sky is the limit right now, so I'm keeping all my options open. Princesses have to do that, you know.
I got to see my friends Dena, Braden, Breslin and Brenna Mae this weekend. They stopped in two different times for very quick visits. Today, they came by because Mom needed Dena's physical therapy expertise. She popped her back yesterday and it really hurt. She couldn't lift me, and she had trouble turning and bending (so Grandma stayed overnight to take care of me-of course, I slept very well for Grandma). Her back was feeling better today, but Dena showed her some good exercises to maybe keep her from doing it again. Mom says she knows she's really old now, because things like this don't happen to "young people."
Next Saturday, we're going to the Roses' house for a big fireworks show. We didn't get to have our usual Fourth of July celebration this year, so we're having a "28th of July" celebration. I get to go out to the country again and see the animals, all those trees, the fields, etc. Then when it gets dark, I'll sit on the deck with the kids while Dad and Doug put on the big "show." While I'm watching the fireworks, I'll probably be thinking about Grandma and Grandpa. They're leaving for Alaska on Friday, so they'll be way up north doing something exciting on their trip. I'm going to miss them!!!
Speaking of Friday, I'll be going to St. Louis on Friday to see some of my doctors. I get to see my very nice pulmonologist. He's going to check on my breathing. I'll also see the G.I. doctor. She wants to see how my new formula is working and how it's going through my system. It was working really great for a while, but then I started leaking again around my button and my skin was getting red again. It has been much better for a couple of days, so who knows? By the time of my appointment on Friday, it will probably look perfect. Mom says it's like a car repair shop. The problem magically goes away when you take the car in to get fixed. I wonder what kind of car she thinks I am. (I think I'm a 1967 Red Stingray Corvette because that is a COOL car!) I'm supposed to get my new leg braces on Friday, too, so I'll get to see Barb, the orthotist. It's going to be a busy day.
I think that just about does it for the wrap-up today. I hope everyone has a wonderful week! I think it's going to be a nice week, so we should all go outside every day!
Saturday, July 14, 2007
Saturday, July 14, 2007
I guess everyone survived Friday the 13th, huh? Nothing too "spooky" or "unusual" happened here. It was a busy day for me, with a visit from my teacher, Miss Paula. We worked on the letter "L," and I colored (with her help) a picture of LIMES. Then my speech therapist and my physical therapist were here later in the day. Dad and Ian were here most of the day, too, so there was always something going on. I got to snuggle with Dad in the afternoon, then with Mom when she got home from work. Aaaah, I love being taken care of!
My tummy is starting to leak again around my feeding button, and it's turning my skin red again. Nobody knows what to do with me. I've also been crying a lot this week, and today I have what appears to be an in-grown toenail on my big toe. Ugh. I just can't keep anything steady, you know. I have to mix it up all the time, keep "my people" on their toes.
It has been very quiet without all the family visitors around. I did get to go outside this past week, and I got to swing. I could just swing all day long. It's my very favorite thing to do. I'm very relaxed when I'm in the swing. I don't cry. I don't gasp. I just hang out and enjoy the ride. It's so much fun!
Even though I had a lot of fun swinging, I did have a few problems last week with my "episodes." I had three last Sunday, one on Tuesday, one on Wednesday, and I thought about having one last night, but Dad talked me out of it. (Thank goodness for Dad! He got me to stop crying, so I calmed down enough to start breathing easy again.) I'm hoping that I'll get to go outside this weekend, but it's pretty hot out there today, and there's a lot of yard work happening today. I can't get in the way, and I don't want to be out there with all that stuff flying around. Even though I'm not "officially" allergic to any of the main Midwest stuff, Mom is still convinced I'm allergic to something. I always cough more after I've been outside when someone is mowing, or when it's windy and I can see stuff flying through the air.
Baby Grant had heart surgery on Thursday to close a valve. The surgery went well and everything looked pretty optimistic. Then he had a bad night, and he's having some problems. It sounds like he'll be hooked up to the respirator for a long time. That machine is NOT fun. Trust me. Also, he has a (treatable) staph infection now, too. So he has another problem to fix. He has to be a strong fighter! I'm praying for him all the time. His brother, Cullen, is doing very well and getting stronger every day.
Miss Kelly, my teacher who had the freak accident a month ago, is coming home from the rehab center today. Mom said that she and Grandma will take me to see her tomorrow if she's settled in and wants visitors. She will be in a wheelchair for a long time, and she's going to work hard to get all her movement back in her legs and feet. I know she can do it, though! I pray for her all the time, too.
My cousin, Lindsay, called last night. She wanted to tell us that she's going to have a baby! She and her husband live in Colorado. I'm so excited that there will be another baby in the family!
Ian is at football camp right now. He's going to play in the Mineral Area Football League this year. This is his first time ever playing football. He's on a team (the Warriors) with his friend Anthony. (Anthony is coming over to spend the night tonight, so I'll be stuck with two stinky boys in the house!!! But that's okay because it means there's more going on - boys running through the house, somebody else to look at, etc.) Mom is going to make Mexican food for dinner, which means my eyes will probably turn red when the onions come out!
Mom and Grandma are nervous wrecks about Ian playing football. I wonder if I'll get to see any of his games. I guess we'll have to see how things are going for me at that time, what the weather is like on those days, and what the "lay of the land" is at the football field. I just hope my big brother doesn't get hurt! He's very excited about the season because he LOVES football. Maybe this will be a really good thing for him, and Mom can just deal with it.
I hope everyone has a great weekend and a very relaxing summer week. Take it easy. Smell the roses. There's only a few weeks left before school starts again! Come by to see me if you have time. Just call first, please! Love to you all.
My tummy is starting to leak again around my feeding button, and it's turning my skin red again. Nobody knows what to do with me. I've also been crying a lot this week, and today I have what appears to be an in-grown toenail on my big toe. Ugh. I just can't keep anything steady, you know. I have to mix it up all the time, keep "my people" on their toes.
It has been very quiet without all the family visitors around. I did get to go outside this past week, and I got to swing. I could just swing all day long. It's my very favorite thing to do. I'm very relaxed when I'm in the swing. I don't cry. I don't gasp. I just hang out and enjoy the ride. It's so much fun!
Even though I had a lot of fun swinging, I did have a few problems last week with my "episodes." I had three last Sunday, one on Tuesday, one on Wednesday, and I thought about having one last night, but Dad talked me out of it. (Thank goodness for Dad! He got me to stop crying, so I calmed down enough to start breathing easy again.) I'm hoping that I'll get to go outside this weekend, but it's pretty hot out there today, and there's a lot of yard work happening today. I can't get in the way, and I don't want to be out there with all that stuff flying around. Even though I'm not "officially" allergic to any of the main Midwest stuff, Mom is still convinced I'm allergic to something. I always cough more after I've been outside when someone is mowing, or when it's windy and I can see stuff flying through the air.
Baby Grant had heart surgery on Thursday to close a valve. The surgery went well and everything looked pretty optimistic. Then he had a bad night, and he's having some problems. It sounds like he'll be hooked up to the respirator for a long time. That machine is NOT fun. Trust me. Also, he has a (treatable) staph infection now, too. So he has another problem to fix. He has to be a strong fighter! I'm praying for him all the time. His brother, Cullen, is doing very well and getting stronger every day.
Miss Kelly, my teacher who had the freak accident a month ago, is coming home from the rehab center today. Mom said that she and Grandma will take me to see her tomorrow if she's settled in and wants visitors. She will be in a wheelchair for a long time, and she's going to work hard to get all her movement back in her legs and feet. I know she can do it, though! I pray for her all the time, too.
My cousin, Lindsay, called last night. She wanted to tell us that she's going to have a baby! She and her husband live in Colorado. I'm so excited that there will be another baby in the family!
Ian is at football camp right now. He's going to play in the Mineral Area Football League this year. This is his first time ever playing football. He's on a team (the Warriors) with his friend Anthony. (Anthony is coming over to spend the night tonight, so I'll be stuck with two stinky boys in the house!!! But that's okay because it means there's more going on - boys running through the house, somebody else to look at, etc.) Mom is going to make Mexican food for dinner, which means my eyes will probably turn red when the onions come out!
Mom and Grandma are nervous wrecks about Ian playing football. I wonder if I'll get to see any of his games. I guess we'll have to see how things are going for me at that time, what the weather is like on those days, and what the "lay of the land" is at the football field. I just hope my big brother doesn't get hurt! He's very excited about the season because he LOVES football. Maybe this will be a really good thing for him, and Mom can just deal with it.
I hope everyone has a great weekend and a very relaxing summer week. Take it easy. Smell the roses. There's only a few weeks left before school starts again! Come by to see me if you have time. Just call first, please! Love to you all.
Monday, July 9, 2007
Monday, July 9, 2007
It's 8:45 p.m. and I just had a successful trach change by Mom, Nurse Nicole and Grandma. Whew! If you've been keeping up with things, then you may be wondering why it happened on a Monday instead of Sunday, as my usual every-other-week schedule has been. Well, yesterday morning I had one of my episodes about 6:30 a.m. It lasted about 15 minutes. It wasn't nearly as scary as that one a couple Thursdays ago, but it was not fun anyway. Then I had two other "short ones" later in the morning. So, Mom and Dad decided it might not be a great day to try the trach change. They decided to wait and see how Monday went before attempting it. I guess it was a good plan, because everything went smoothly. Grandma was taking notes so she would know what to do if she ever had to do it herself. (Hopefully she won't have to do that because it's stressful enough with six hands or four hands. Two hands might be too scary.)
Things have been pretty quiet around my house since all my relatives flew the coop. Grandma stayed with me on Friday while Dad had to work on the computer all day. She was sad that Cousin Addison and Aunt Jenny had to go home, but she said she was so happy to have me to snuggle with!
Mom and Ian called me a lot while they were in Chicago. I always like to hear their voices. They had a good time in the Windy City with Uncle Scotty. They even got to go sailing on Lake Michigan. Wow! That would be fun! Dad made sure I was awake when they got home Saturday night, and Mom rocked me in the chair for a long time.
Dad snuggled with me a lot yesterday because he had to go back to New Jersey today. He wasn't feeling very well, and I really feel sorry for him. It sounds like it would be very hard to fly on a plane, have the rental car place be behind schedule, and try to work hard and think straight when you're not feeling yourself. I hope he feels all well really soon. When he comes home this weekend, I want him to be back to 100%!
Tonight was Ian's last baseball game. He hit a grand slam home run! (He's a really good baseball player.) I saw him play his first game this year. His team was the Marlins. They had a 9-1 season and ended up in first place. I'm so proud of my big brother! He's the best!
The next couple of weeks are going to be kind of uneventful. Nothing big on the schedule right now. Grandma and Grandpa are getting ready for their big trip to Alaska, so every time I see Grandpa, he's counting down the days. This is their 50th state. When they touch down in Alaska, they will have made it to all of the United States, so Grandpa will have met his goal. Someday I'd like to go to another state. It's kind of crazy to think that I've spent my entire life in Missouri, and almost all of it in Farmington. Other than that, I've been to St. Louis for hospital stays and doctors' appointments. I have been out to the country, though, so that's kind of cool.
Oh - here's the BIG NEWS in my family. Uncle Kevin and Aunt Janet are going to have TWINS!!! The due date is January 1, but they said the babies will probably be born closer to Thanksgiving. Wow! Isn't that the greatest news??? They finally gave us the okay to share the good news with everyone we know, so here's the big announcement - right here in black and white. I'm so excited to have more cousins! Ian thinks they should both be boys, but I think they should both be girls. Whatever they have, I'll be so happy to meet them. More babies to sit on my lap. I wish they didn't live in California. They're too far away to see them very often. Please say some prayers for everything to go smoothly. Aunt Janet is having to do a lot of extra special things to keep those babies healthy in there so all goes well.
While we're talking about babies, please say some extra prayers for Cullen and Grant, too. They're still in the hospital, and I want them to grow and get stronger and healthier as quickly as possible so they can go home with their mommy and daddy (and sister and brother).
Grandma and Grandpa saw Miss Kelly the other day when they were in St. Louis. Miss Kelly was my teacher for a long time. She's the one who had the terrible accident in June and broke her back. She is getting better and working hard in therapy, but she has a loooooooong way to go. She needs lots of prayers, too.
I'm going to go to sleep now. It's late and I should be getting my beauty rest. That's what princesses have to do. Take care, everyone! God bless you, every day.
Things have been pretty quiet around my house since all my relatives flew the coop. Grandma stayed with me on Friday while Dad had to work on the computer all day. She was sad that Cousin Addison and Aunt Jenny had to go home, but she said she was so happy to have me to snuggle with!
Mom and Ian called me a lot while they were in Chicago. I always like to hear their voices. They had a good time in the Windy City with Uncle Scotty. They even got to go sailing on Lake Michigan. Wow! That would be fun! Dad made sure I was awake when they got home Saturday night, and Mom rocked me in the chair for a long time.
Dad snuggled with me a lot yesterday because he had to go back to New Jersey today. He wasn't feeling very well, and I really feel sorry for him. It sounds like it would be very hard to fly on a plane, have the rental car place be behind schedule, and try to work hard and think straight when you're not feeling yourself. I hope he feels all well really soon. When he comes home this weekend, I want him to be back to 100%!
Tonight was Ian's last baseball game. He hit a grand slam home run! (He's a really good baseball player.) I saw him play his first game this year. His team was the Marlins. They had a 9-1 season and ended up in first place. I'm so proud of my big brother! He's the best!
The next couple of weeks are going to be kind of uneventful. Nothing big on the schedule right now. Grandma and Grandpa are getting ready for their big trip to Alaska, so every time I see Grandpa, he's counting down the days. This is their 50th state. When they touch down in Alaska, they will have made it to all of the United States, so Grandpa will have met his goal. Someday I'd like to go to another state. It's kind of crazy to think that I've spent my entire life in Missouri, and almost all of it in Farmington. Other than that, I've been to St. Louis for hospital stays and doctors' appointments. I have been out to the country, though, so that's kind of cool.
Oh - here's the BIG NEWS in my family. Uncle Kevin and Aunt Janet are going to have TWINS!!! The due date is January 1, but they said the babies will probably be born closer to Thanksgiving. Wow! Isn't that the greatest news??? They finally gave us the okay to share the good news with everyone we know, so here's the big announcement - right here in black and white. I'm so excited to have more cousins! Ian thinks they should both be boys, but I think they should both be girls. Whatever they have, I'll be so happy to meet them. More babies to sit on my lap. I wish they didn't live in California. They're too far away to see them very often. Please say some prayers for everything to go smoothly. Aunt Janet is having to do a lot of extra special things to keep those babies healthy in there so all goes well.
While we're talking about babies, please say some extra prayers for Cullen and Grant, too. They're still in the hospital, and I want them to grow and get stronger and healthier as quickly as possible so they can go home with their mommy and daddy (and sister and brother).
Grandma and Grandpa saw Miss Kelly the other day when they were in St. Louis. Miss Kelly was my teacher for a long time. She's the one who had the terrible accident in June and broke her back. She is getting better and working hard in therapy, but she has a loooooooong way to go. She needs lots of prayers, too.
I'm going to go to sleep now. It's late and I should be getting my beauty rest. That's what princesses have to do. Take care, everyone! God bless you, every day.
Wednesday, July 4, 2007
Wednesday, July 4, 2007
It's 2 o'clock on the Fourth of July. I bet you are all out there barbecuing and shooting off fireworks today for my mom's birthday. She and I just had a 2-1/2 hour snuggle in the rocking chair. Aunt Jenny and Cousin Addison were here for an hour, and I watched Addy play with some toys, eat some lunch and then play with her mom's makeup. She got the lid off the lipstick, then stuck her finger down in the tube. Boy oh boy, did that cause Mom and Aunt Jen to perk up. "Oh, no, Addison! Oops! Gotta get that lipstick off your fingers before you get it on everything!" (She was NOT happy about having the fun makeup taken away.)
This has been a very busy week. I'll bring you up to speed as quickly as I can. On Monday morning, the allergist called to say that she got the test results back from my blood test in the hospital. They had sent off my blood for a full Midwest panel to see what I might be allergic to here in Missouri. Guess what - it was NEGATIVE - on everything! Cats, dogs, trees, grass, ragweed, dust mites, mold, etc. I'm clear. Now, while that is good news, of course, it makes us all go, "Hmmmm. How is it all clear if my troubles all seem to start up in the Spring/Summer?" Another mystery to add to my list. I'm just full of them!
Then a little later on Monday morning, my Uncle Scotty showed up in town! Wow! What a big surprise! Nobody knew he was coming. Mom and Ian are going to Chicago to visit Uncle Scotty tomorrow, and he shows up in town the same week! He said that since his days off are Monday and Tuesday, and Addison was in town, he thought he'd better get to Farmington to see everyone while we're all in one place. He talked to me and gave me kisses, and he played catch with Ian. On Monday evening, I went to Ms. Ruby's pool to watch Uncle Scotty, Ian, Cousin Addison and Grandma swim for a while. Mom and I supervised. I can't get in the water anymore since I have my trach tube - too dangerous. That water could splash into my tube and go right into my lungs. That's pneumonia waiting to happen! (But watching them splash around was fun, too, even though Addison was kind of fussy.)
Uncle Scotty was telling us about a baseball game he went to in Chicago. He saw the Cubs play the Rockies, and he had a seat right at the Rockies dugout. While the Rockies were warming up, his friends were heckling the players a bit. (I'm not sure what that is, but it doesn't sound very nice.) Then Uncle Scotty yelled to the Rockies pitcher and asked if he would take a picture of him and his friends up in the stands. He said, "Sure!" so he threw his phone down to the pitcher, and the guy dropped his phone (great hands for a baseball player!), then he took his picture and threw the phone back to him. Kind of funny, huh?
Speaking of funny things, the other day, my mom was writing in my cousin Rachel's birthday card. She yelled to Ian, "Come in here and sign this, Ian." (He always helps me sign my name on birthday cards.) He went to the kitchen and said, "What is it, a liability waiver?" (What was he talking about? He's so weird.) Then, Uncle Scotty was talking about some movies he had seen. Mom said she hadn't seen many movies over the last few yeas, and Uncle Scotty hadn't either. He said he really didn't like movies very much. Ian said, "And yet you work in Hollywood. Oh, the irony!" (My brother - he talks like a grown-up sometimes.)
My teacher, Ms. Paula, came to work with me two times on Monday. Mom videotaped some of my classwork. I did a really good job looking at the right pictures, and I turned my head to the right shapes. My PT, Jan, came to see me, too. It was a busy day, with all kinds of visitors!
On Tuesday morning, I had a dentist appointment. Jennifer is my hygienist's name. She is so nice to me. She cleaned my teeth very carefully, then polished them and put fluoride on them. Then the best dentist in the world came to look at my teeth. He found two teeth that are almost loose - so Mom and Dad have to keep a close eye on those. We don't want anymore teeth going down my esophagus! My next appointment, I have to get x-rays. Those are REALLY hard to do in my mouth. I like to be challenging.
Tuesday afternoon, my OT, (Ms. Sarah), my Speech Therapist (Ms. Kathy), and my new "main teacher" (Mrs. Eaton) came to my house to work with me and talk about the best plan for the rest of the summer and when the new school year starts. Did you know that my school starts again on August 16? That's way too early, isn't it? But that's okay because I love school work.
Also on Tuesday, I got to see Uncle Scotty again, Aunt Jenny, Uncle Ryan, Cousin Addison and Grandma. Then Uncle Scotty had to leave. Addison played at my house for an hour while Aunt Jenny and Mom went shopping. Dad and Ian watched her play and showed her some smoke bombs and sparklers outside. She wasn't allowed to get too close to anything, though.
I'll tell you what, the last five days have just been cram-packed with people at my house, and it's not over yet. Everyone is coming here for Mom's birthday dinner this evening. Dad is cooking, which makes the house smell so good! I wish I could eat it. Nurse Nicole made Mom's birthday cake. It's "chocolate orange blossom." Doesn't that sound delicious? It's a chocolate cake with orange-flavored icing. I bet Dad will put some on my tongue for me - maybe even a tiny bit of ice cream. They don't want me to get anything down the wrong tube and end up in my lungs, so I only get tiny bits of tasty things to see if I like them. I bet Mom will ask me to help her blow out her candles, but there will be WAY TOO MANY for me to blow out, though!!!
I think you are all caught up now on what I've been doing. I'll probably have to wait a while to write again. Mom has to help me, you know, and she'll be gone a few days. She is my typing assistant. I tell her what to write, and she does it for me. Right now, I'm starting to get all gurgly again, so she's going to have to go suction me. I have to keep her on her toes! That's one way to keep her young.
Happy Independence Day to everyone! Love to you all!
This has been a very busy week. I'll bring you up to speed as quickly as I can. On Monday morning, the allergist called to say that she got the test results back from my blood test in the hospital. They had sent off my blood for a full Midwest panel to see what I might be allergic to here in Missouri. Guess what - it was NEGATIVE - on everything! Cats, dogs, trees, grass, ragweed, dust mites, mold, etc. I'm clear. Now, while that is good news, of course, it makes us all go, "Hmmmm. How is it all clear if my troubles all seem to start up in the Spring/Summer?" Another mystery to add to my list. I'm just full of them!
Then a little later on Monday morning, my Uncle Scotty showed up in town! Wow! What a big surprise! Nobody knew he was coming. Mom and Ian are going to Chicago to visit Uncle Scotty tomorrow, and he shows up in town the same week! He said that since his days off are Monday and Tuesday, and Addison was in town, he thought he'd better get to Farmington to see everyone while we're all in one place. He talked to me and gave me kisses, and he played catch with Ian. On Monday evening, I went to Ms. Ruby's pool to watch Uncle Scotty, Ian, Cousin Addison and Grandma swim for a while. Mom and I supervised. I can't get in the water anymore since I have my trach tube - too dangerous. That water could splash into my tube and go right into my lungs. That's pneumonia waiting to happen! (But watching them splash around was fun, too, even though Addison was kind of fussy.)
Uncle Scotty was telling us about a baseball game he went to in Chicago. He saw the Cubs play the Rockies, and he had a seat right at the Rockies dugout. While the Rockies were warming up, his friends were heckling the players a bit. (I'm not sure what that is, but it doesn't sound very nice.) Then Uncle Scotty yelled to the Rockies pitcher and asked if he would take a picture of him and his friends up in the stands. He said, "Sure!" so he threw his phone down to the pitcher, and the guy dropped his phone (great hands for a baseball player!), then he took his picture and threw the phone back to him. Kind of funny, huh?
Speaking of funny things, the other day, my mom was writing in my cousin Rachel's birthday card. She yelled to Ian, "Come in here and sign this, Ian." (He always helps me sign my name on birthday cards.) He went to the kitchen and said, "What is it, a liability waiver?" (What was he talking about? He's so weird.) Then, Uncle Scotty was talking about some movies he had seen. Mom said she hadn't seen many movies over the last few yeas, and Uncle Scotty hadn't either. He said he really didn't like movies very much. Ian said, "And yet you work in Hollywood. Oh, the irony!" (My brother - he talks like a grown-up sometimes.)
My teacher, Ms. Paula, came to work with me two times on Monday. Mom videotaped some of my classwork. I did a really good job looking at the right pictures, and I turned my head to the right shapes. My PT, Jan, came to see me, too. It was a busy day, with all kinds of visitors!
On Tuesday morning, I had a dentist appointment. Jennifer is my hygienist's name. She is so nice to me. She cleaned my teeth very carefully, then polished them and put fluoride on them. Then the best dentist in the world came to look at my teeth. He found two teeth that are almost loose - so Mom and Dad have to keep a close eye on those. We don't want anymore teeth going down my esophagus! My next appointment, I have to get x-rays. Those are REALLY hard to do in my mouth. I like to be challenging.
Tuesday afternoon, my OT, (Ms. Sarah), my Speech Therapist (Ms. Kathy), and my new "main teacher" (Mrs. Eaton) came to my house to work with me and talk about the best plan for the rest of the summer and when the new school year starts. Did you know that my school starts again on August 16? That's way too early, isn't it? But that's okay because I love school work.
Also on Tuesday, I got to see Uncle Scotty again, Aunt Jenny, Uncle Ryan, Cousin Addison and Grandma. Then Uncle Scotty had to leave. Addison played at my house for an hour while Aunt Jenny and Mom went shopping. Dad and Ian watched her play and showed her some smoke bombs and sparklers outside. She wasn't allowed to get too close to anything, though.
I'll tell you what, the last five days have just been cram-packed with people at my house, and it's not over yet. Everyone is coming here for Mom's birthday dinner this evening. Dad is cooking, which makes the house smell so good! I wish I could eat it. Nurse Nicole made Mom's birthday cake. It's "chocolate orange blossom." Doesn't that sound delicious? It's a chocolate cake with orange-flavored icing. I bet Dad will put some on my tongue for me - maybe even a tiny bit of ice cream. They don't want me to get anything down the wrong tube and end up in my lungs, so I only get tiny bits of tasty things to see if I like them. I bet Mom will ask me to help her blow out her candles, but there will be WAY TOO MANY for me to blow out, though!!!
I think you are all caught up now on what I've been doing. I'll probably have to wait a while to write again. Mom has to help me, you know, and she'll be gone a few days. She is my typing assistant. I tell her what to write, and she does it for me. Right now, I'm starting to get all gurgly again, so she's going to have to go suction me. I have to keep her on her toes! That's one way to keep her young.
Happy Independence Day to everyone! Love to you all!
Sunday, July 1, 2007
Sunday, July 1, 2007
It's almost 10:30 on Sunday morning. I'm getting ready to have my "lunch," which consists of Nutren Jr., the all-liquid gourmet diet for special kids like me! I'm kind of tired because this has been a pretty busy weekend. Grandma Powers, Uncle Don, Aunt Marie and Cousin Asher (almost 10 months old) just left to go back to Independence. They got here yesterday around noon, and we all spent a lot of time visiting and watching Asher play. I got to swing in my swing, and Dad put Asher on my lap so we could swing together. It was a lot of fun, and Mom said I was a good babysitter. Before he left, Asher got to sit on my lap while I was in my wheelchair, too. He's a very cute baby - very happy, pretty chuncky, and lots of fun to watch. Ian liked playing with him, too.
Grandma Powers held me for a while yesterday. That was really nice, getting to snuggle with her. I hope she comes back soon so we can do that again! Uncle Don played baseball with Dad and Ian, and Aunt Marie visited with me and took care of Asher. It was so great having them here!
My cousin Addison got to Farmington really, really late Thursday night (it was really early Friday morning) because her flight was delayed and then the airline lost Aunt Jen's luggage. I got to see Addison on Friday - two times, and then she came over two times yesterday. She and Grandma and Grandpa Ross visited with the Asher, too. Addison didn't want to share her toys with Asher. She's 14 months old, and she thinks she's the boss! She's very cute, though, and she's funny to watch. She says, "No no no no no." She has a funny laugh. It makes me smile. We got to hold our Elmos together, and we all watched her Elmo laugh and laugh and fall on the floor. It made everyone laugh. My Elmo sings the alphabet song, but he doesn't laugh and wiggle around. (He is soft, though!)
Each time Mom turned on my suction machine, Addison looked very worried and kind of scared. Asher just looked at it and was trying to figure out what it was. He wanted to explore my "cart" with all my medical equipment on it. I guess I don't have the baby-friendliest stuff, do I? Mom kept saying, "Oh, that's not a toy. Ooops - you can't play with that." I wish I had fun stuff on my cart that babies could play with!
When the nurse or mom or dad beat on me (doing chest percussions to loosen up the stuff inside to help me cough it out), Addison and Asher didn't know what to think. I'm sure their mommies are saying, "Don't ever hit people," and then they got to see people hitting me. I'm sure that's what it looked like to them. But it doesn't hurt. It actually feels good, because it helps me get the goo out so I can breathe better.
Speaking of breathing, I've been doing pretty well since the big blow-out Thursday morning. I had a little episode yesterday morning, but the nurse was able to handle it pretty quickly. I'm tired of those gasping episodes. They scare me and they wear me out.
I bet Dad will hold me today while Mom irons. That's kind of a "Sunday afternoon" thing to do. Since it's rainy outside, I won't get to swing today, so I'll just have to stay inside and supervise all the indoor chores everyone else has to do.
I'm very excited because Dad will be working from home this week and Mom is on vacation. Ian is finished with Scholars Academy at MAC, and Addison is still in town. I'll have lots of good play time and snuggle time this week! I hope you have a great week, too!
Grandma Powers held me for a while yesterday. That was really nice, getting to snuggle with her. I hope she comes back soon so we can do that again! Uncle Don played baseball with Dad and Ian, and Aunt Marie visited with me and took care of Asher. It was so great having them here!
My cousin Addison got to Farmington really, really late Thursday night (it was really early Friday morning) because her flight was delayed and then the airline lost Aunt Jen's luggage. I got to see Addison on Friday - two times, and then she came over two times yesterday. She and Grandma and Grandpa Ross visited with the Asher, too. Addison didn't want to share her toys with Asher. She's 14 months old, and she thinks she's the boss! She's very cute, though, and she's funny to watch. She says, "No no no no no." She has a funny laugh. It makes me smile. We got to hold our Elmos together, and we all watched her Elmo laugh and laugh and fall on the floor. It made everyone laugh. My Elmo sings the alphabet song, but he doesn't laugh and wiggle around. (He is soft, though!)
Each time Mom turned on my suction machine, Addison looked very worried and kind of scared. Asher just looked at it and was trying to figure out what it was. He wanted to explore my "cart" with all my medical equipment on it. I guess I don't have the baby-friendliest stuff, do I? Mom kept saying, "Oh, that's not a toy. Ooops - you can't play with that." I wish I had fun stuff on my cart that babies could play with!
When the nurse or mom or dad beat on me (doing chest percussions to loosen up the stuff inside to help me cough it out), Addison and Asher didn't know what to think. I'm sure their mommies are saying, "Don't ever hit people," and then they got to see people hitting me. I'm sure that's what it looked like to them. But it doesn't hurt. It actually feels good, because it helps me get the goo out so I can breathe better.
Speaking of breathing, I've been doing pretty well since the big blow-out Thursday morning. I had a little episode yesterday morning, but the nurse was able to handle it pretty quickly. I'm tired of those gasping episodes. They scare me and they wear me out.
I bet Dad will hold me today while Mom irons. That's kind of a "Sunday afternoon" thing to do. Since it's rainy outside, I won't get to swing today, so I'll just have to stay inside and supervise all the indoor chores everyone else has to do.
I'm very excited because Dad will be working from home this week and Mom is on vacation. Ian is finished with Scholars Academy at MAC, and Addison is still in town. I'll have lots of good play time and snuggle time this week! I hope you have a great week, too!
Thursday, June 28, 2007
Thursday, June 28, 2007
I'm here. I'm alive, and I'm so happy that I am! It was touch-and-go for a while early this morning. Really bad, actually. Very scary.
Only one time have I ever had a real problem with my oxygen level while I've been sleeping, and it was when I was in the hospital a few weeks ago. Other than some fairly fast de-sats that are solved by deep suctioning or repositioning, I do pretty well when I'm sleeping, but last night was different.
At 3:47 a.m., my oxygen level started to drop so the nurse was getting ready to deep suction me, when I started gasping and my oxygen level crashed quickly. She called Mom on the intercom and somehow Mom teleported herself into my bedroom within about two seconds. Mom and the nurse were using the ambu-bag on me, and they hooked up the oxygen tank to give me some extra help. I was scared because I couldn't catch a good breath. As long as they were pumping the bag, I was pink and my O2 level was 95-99, but when they stopped using the bag, my O2 would start dropping. They tried repositioning me, deep suctioning, the CPAP machine, and even a breathing treatment. Nothing was working. Mom called Dad in New Jersey and he talked to me on the speaker phone while Mom and Nicole kept working on me. After about 30 minutes total, I was able to maintain my O2 level without their help.
It's 7:15 a.m., and right now I'm sitting in my chair. I was listening to music for a while. Mom held me in the rocking chair before she got in the shower, and I've talked to Dad a LOT on the phone this morning. He was going to get an earlier flight home, but he said the airport in New York is having problems, so people are driving to the Philadelphia airport to fly out. No flights available. He's hoping his 6 p.m. flight will leave on time.
While I was having my problems this morning, I kept thinking about how I had to breathe, breathe, breathe because my cousin Addison is coming to Farmington tonight. We're supposed to play with our Elmo dolls together. Also, Dad will be home tonight to give me kisses. Plus, Grandma Powers, Uncle Don, Aunt Marie and Cousin Asher are supposed to be here this weekend to see me. So many visitors! I have to keep breathing so I can see everyone.
Mom said she was praying, "Please don't let today be the day."
It wasn't! I'm still here! Thank you, God! Another day to see the trees and hear story books. Another day to snuggle and be kissed on my soft, pink cheeks - the SOFTEST cheeks in the world, I've been told.
The other night, my friend Jacob (Nurse Nicole's son) came over to read me some books and show me the shells he got on his trip to Florida. It was really neat. He even had some alligator bones and told me the difference between alligators and crocodiles. Nurse Diane watches Animal Planet all the time, so she told us all about the creatures that lived in the shells he was showing me. Jacob read me a story about monkeys, and he was such a good reader! I love it when he comes to visit me, so I have to keep on breathing every day until he can come again.
I am so thankful to be here and to be able to share my story with you. I feel like all my friends out there are praying for me all the time. I can hear the prayers. The angels sitting on my shoulders tell me all about them. Thank you!!! I'll talk to you again soon.
Only one time have I ever had a real problem with my oxygen level while I've been sleeping, and it was when I was in the hospital a few weeks ago. Other than some fairly fast de-sats that are solved by deep suctioning or repositioning, I do pretty well when I'm sleeping, but last night was different.
At 3:47 a.m., my oxygen level started to drop so the nurse was getting ready to deep suction me, when I started gasping and my oxygen level crashed quickly. She called Mom on the intercom and somehow Mom teleported herself into my bedroom within about two seconds. Mom and the nurse were using the ambu-bag on me, and they hooked up the oxygen tank to give me some extra help. I was scared because I couldn't catch a good breath. As long as they were pumping the bag, I was pink and my O2 level was 95-99, but when they stopped using the bag, my O2 would start dropping. They tried repositioning me, deep suctioning, the CPAP machine, and even a breathing treatment. Nothing was working. Mom called Dad in New Jersey and he talked to me on the speaker phone while Mom and Nicole kept working on me. After about 30 minutes total, I was able to maintain my O2 level without their help.
It's 7:15 a.m., and right now I'm sitting in my chair. I was listening to music for a while. Mom held me in the rocking chair before she got in the shower, and I've talked to Dad a LOT on the phone this morning. He was going to get an earlier flight home, but he said the airport in New York is having problems, so people are driving to the Philadelphia airport to fly out. No flights available. He's hoping his 6 p.m. flight will leave on time.
While I was having my problems this morning, I kept thinking about how I had to breathe, breathe, breathe because my cousin Addison is coming to Farmington tonight. We're supposed to play with our Elmo dolls together. Also, Dad will be home tonight to give me kisses. Plus, Grandma Powers, Uncle Don, Aunt Marie and Cousin Asher are supposed to be here this weekend to see me. So many visitors! I have to keep breathing so I can see everyone.
Mom said she was praying, "Please don't let today be the day."
It wasn't! I'm still here! Thank you, God! Another day to see the trees and hear story books. Another day to snuggle and be kissed on my soft, pink cheeks - the SOFTEST cheeks in the world, I've been told.
The other night, my friend Jacob (Nurse Nicole's son) came over to read me some books and show me the shells he got on his trip to Florida. It was really neat. He even had some alligator bones and told me the difference between alligators and crocodiles. Nurse Diane watches Animal Planet all the time, so she told us all about the creatures that lived in the shells he was showing me. Jacob read me a story about monkeys, and he was such a good reader! I love it when he comes to visit me, so I have to keep on breathing every day until he can come again.
I am so thankful to be here and to be able to share my story with you. I feel like all my friends out there are praying for me all the time. I can hear the prayers. The angels sitting on my shoulders tell me all about them. Thank you!!! I'll talk to you again soon.
Monday, June 25, 2007
Monday, June 25, 2007
It's just about 7 o'clock on Monday evening. Ian just left for baseball practice and Mom is getting my medicine ready. Nurse Nicole will be here soon, so Mom is going to run some errands and try to clean up the house a little bit while she's taking care of me and before Ian gets home. She's always rushing around and trying to get a hundred things done. She wears me out.
Dad left at 3:30 this morning to catch his 6 a.m. flight to Philadelphia. He gave me kisses goodbye, but I didn't wake up. (I got to talk to him, though, right before the plane took off.) I don't like Mondays because Dad flies away on Mondays. I cried a lot today, but Grandma did a great job of cheering me up. Mom and her friend Sarah came to see me at lunch today. I sat in the kitchen with them while they ate. I had several crying times during lunch, but Grandma and Mom came to the rescue. They just don't realize how sad I am when Dad is gone. I know he'll be home again Thursday night, but it makes me very sad when he's so far away. (He calls me a lot, though, so I get to hear his voice. And Ian runs into to give me his magic Big Brother kisses when he knows I'm sad, so that makes me happy, too!)
I didn't do anything very exciting this weekend. Dad and Ian had a big adventure on Friday, and when they came home Saturday afternoon, Dad held me in the rocking chair for 3-1/2 hours while Mom ironed. I supervised (and watched Finding Nemo at the same time). That's my job when she's ironing - to supervise. She said she was hoping that the Ironing Fairy would show up to do all that work because she was so far behind from when I was in the hospital. Grandma did some of it last week, but then the pile grew again. How does it do that? Dirty clothes and ironing - the piles always grow and grow and grow. I don't have to do any of those chores because I'm a princess. I always get to supervise.
Yesterday was a Trach Change day. Mom and Dad (and I) were a little nervous about doing it at home again. The last one I had was in the hospital, and it went very well, so there was no reason to believe there would be a problem. However, with all my mysterious ways, their blood pressure seemed to be up a bit. Nurse Nicole was the suction girl. Dad held my head back and rubbed my cheeks to relax me. Mom had the big job of pulling out the old tube and putting the new one in. It was smooth! I fell asleep right after it was done. Good job, Mom! No breathing problems from me!
I've only had one gasping episode since I came home from the hospital on June 15. I don't know if this is some kind of vacation from my problems (like What About Bob) or if everyone is just trying so hard to stop me from crying the second I start, that I can't go into one of the episodes. Whatever it is, I'm okay with it. I don't like to gasp for breath, and I don't like to scare people. I just want to keep on breathing!
I've only gotten to go outside for a few minutes the last few days because it has been so darn hot and muggy. I can't stand it when it's like that. I get so sweaty in my wheelchair, and if I have my leg braces on, they really stick to my legs. It's not very comfortable. I like it when it's about 75 degrees outside - that's the perfect temperature to swing in my swing. I can feel the wind in my golden hair, and I feel like I'm flying! If you haven't been on a swing in a while, maybe you should find a playground and go swing - or Mom says there's a swing at Six Flags that goes round and round and round. That might be fun, too! Mom usually takes Ian to Six Flags once each summer and then they tell me about their day, but this year they're going to Chicago instead. Uncle Scotty Wotty Poo Poo Head (yes, that's his nick name!) is there for a while working on a job, so Mom and Ian are going to fly there on July 5 and come home July 7. I'm going to miss them while they're gone, BUT here's the good news: I'll have my dad all to myself while they're away! Since the Fourth of July is on a Wednesday this year, Dad's company said he doesn't have to fly to the East Coast that week - he has to work from home. So guess what that means! I'll see Dad EVERY DAY next week. We'll get to snuggle a lot. I like to sit on Dad's lap in the big rocking chair and lean back, right up against his shoulder. It's the perfect place!
What are YOU going to do on the Fourth of July this year? Farmington is having a big fireworks display this year. I'm usually asleep by 8 or 8:30, so I always miss the fireworks. I got to see some last year, though, at our friends' the Roses' house. Since Cousin Addison, Aunt Jenny and Uncle Ryan will be in town this year for the Fourth, I think they will all be over here at my house celebrating my Mom's birthday. She's kind of dreading it this year: the big 4-0. She keeps saying things like, "Ugh! I'm old." She's not old! (But Dad is. Ha ha ha. I love you, Dad!) Ian keeps wanting to get older while Mom and Dad want to stop getting older. Grandma's birthday was the day I came home from the hospital, and she said she was skipping all her birthdays now. What's the fun in that? Grown-ups are so weird.
Nurse Nicole is here now, so I have to go do my bedtime stuff. I have to get my teeth brush, my trach site cleaned, my feeding tube button cleaned, my body washed off, and my pajamas on. Then I get my hair brushed and I have my dinner. (Actually, my dinner is going in the whole time I'm doing these other things. Yes, I'm the queen of multi-tasking!) Then I get really sleepy and I drift off into dreamland.
I hope you all have wonderful dreams tonight! God bless!
Dad left at 3:30 this morning to catch his 6 a.m. flight to Philadelphia. He gave me kisses goodbye, but I didn't wake up. (I got to talk to him, though, right before the plane took off.) I don't like Mondays because Dad flies away on Mondays. I cried a lot today, but Grandma did a great job of cheering me up. Mom and her friend Sarah came to see me at lunch today. I sat in the kitchen with them while they ate. I had several crying times during lunch, but Grandma and Mom came to the rescue. They just don't realize how sad I am when Dad is gone. I know he'll be home again Thursday night, but it makes me very sad when he's so far away. (He calls me a lot, though, so I get to hear his voice. And Ian runs into to give me his magic Big Brother kisses when he knows I'm sad, so that makes me happy, too!)
I didn't do anything very exciting this weekend. Dad and Ian had a big adventure on Friday, and when they came home Saturday afternoon, Dad held me in the rocking chair for 3-1/2 hours while Mom ironed. I supervised (and watched Finding Nemo at the same time). That's my job when she's ironing - to supervise. She said she was hoping that the Ironing Fairy would show up to do all that work because she was so far behind from when I was in the hospital. Grandma did some of it last week, but then the pile grew again. How does it do that? Dirty clothes and ironing - the piles always grow and grow and grow. I don't have to do any of those chores because I'm a princess. I always get to supervise.
Yesterday was a Trach Change day. Mom and Dad (and I) were a little nervous about doing it at home again. The last one I had was in the hospital, and it went very well, so there was no reason to believe there would be a problem. However, with all my mysterious ways, their blood pressure seemed to be up a bit. Nurse Nicole was the suction girl. Dad held my head back and rubbed my cheeks to relax me. Mom had the big job of pulling out the old tube and putting the new one in. It was smooth! I fell asleep right after it was done. Good job, Mom! No breathing problems from me!
I've only had one gasping episode since I came home from the hospital on June 15. I don't know if this is some kind of vacation from my problems (like What About Bob) or if everyone is just trying so hard to stop me from crying the second I start, that I can't go into one of the episodes. Whatever it is, I'm okay with it. I don't like to gasp for breath, and I don't like to scare people. I just want to keep on breathing!
I've only gotten to go outside for a few minutes the last few days because it has been so darn hot and muggy. I can't stand it when it's like that. I get so sweaty in my wheelchair, and if I have my leg braces on, they really stick to my legs. It's not very comfortable. I like it when it's about 75 degrees outside - that's the perfect temperature to swing in my swing. I can feel the wind in my golden hair, and I feel like I'm flying! If you haven't been on a swing in a while, maybe you should find a playground and go swing - or Mom says there's a swing at Six Flags that goes round and round and round. That might be fun, too! Mom usually takes Ian to Six Flags once each summer and then they tell me about their day, but this year they're going to Chicago instead. Uncle Scotty Wotty Poo Poo Head (yes, that's his nick name!) is there for a while working on a job, so Mom and Ian are going to fly there on July 5 and come home July 7. I'm going to miss them while they're gone, BUT here's the good news: I'll have my dad all to myself while they're away! Since the Fourth of July is on a Wednesday this year, Dad's company said he doesn't have to fly to the East Coast that week - he has to work from home. So guess what that means! I'll see Dad EVERY DAY next week. We'll get to snuggle a lot. I like to sit on Dad's lap in the big rocking chair and lean back, right up against his shoulder. It's the perfect place!
What are YOU going to do on the Fourth of July this year? Farmington is having a big fireworks display this year. I'm usually asleep by 8 or 8:30, so I always miss the fireworks. I got to see some last year, though, at our friends' the Roses' house. Since Cousin Addison, Aunt Jenny and Uncle Ryan will be in town this year for the Fourth, I think they will all be over here at my house celebrating my Mom's birthday. She's kind of dreading it this year: the big 4-0. She keeps saying things like, "Ugh! I'm old." She's not old! (But Dad is. Ha ha ha. I love you, Dad!) Ian keeps wanting to get older while Mom and Dad want to stop getting older. Grandma's birthday was the day I came home from the hospital, and she said she was skipping all her birthdays now. What's the fun in that? Grown-ups are so weird.
Nurse Nicole is here now, so I have to go do my bedtime stuff. I have to get my teeth brush, my trach site cleaned, my feeding tube button cleaned, my body washed off, and my pajamas on. Then I get my hair brushed and I have my dinner. (Actually, my dinner is going in the whole time I'm doing these other things. Yes, I'm the queen of multi-tasking!) Then I get really sleepy and I drift off into dreamland.
I hope you all have wonderful dreams tonight! God bless!
Wednesday, June 20, 2007
Wednesday, June 20, 2007
I've had some visitors the last few days. Since I've been home from the hospital, I've already seen all my nurses: Nicole, Sandy, Diane and Caroline. It was so good to see them again. The nurses at Cardinal Glennon are very nice, but it's just not the same as my "home" nurses!
My friend Eileen came to visit me on Sunday. She was the Sunday School teacher for third and fourth grade, so she brought the lesson to me. It was so nice to have her here, and she says she'll be back every other week with the lesson.
I've also seen my physical therapist (Jan), my speech therapist (Kathy) and my teacher (Paula). They're all trying to get me back into "summer school" mode. I'm not sure who my new occupational therapist will be since OT Sherri is going back and forth to the hospital every day to see her new babies at St. John's.
Now, here's the best part of the week: My Uncle Kevin was here from California! Not only did I get to see him, but he also came to see Grandma to wish her a happy birthday in person, and he was helping Grandma and Grandpa clean the garage. (Mom says that is NOT a fun job.) Ian spent the night at Grandma's house each night Uncle Kevin was here, but I stayed home with Mom. (He came to see me during the day, though!)
Aunt Jenny, Cousin Addison and Uncle Ryan (from Mississippi) will be here for Mom's birthday (firecracker day). Mom said that Grandma Powers, Uncle Don, Aunt Marie and Cousin Asher will be coming to visit me soon, too. They might all be here at the same time. Wow! This is going to be a great summer!
If YOU want to come visit me, just let Mom and Dad know. They'll make sure you don't come on the day of a doctor's appointment. Every now and then those things pop up on my busy social calendar! :)
I've had some really good days since I got home Friday night, and I've only had one episode that required the ambu-bag (and that one only needed a couple of "puffs"). We're all glad about that. It's good to breathe, you know? Take a deep breath and see how good that feels to fill up your lungs. We take that for granted, don't we? So not only should we stop to smell the roses every now and then, I guess we should also stop to take a deep breath, too, and just thank God that we're alive!
My mom talked to my former teacher, Kelly, yesterday. (She's the one who fell off the balcony and broke her back a couple of weeks ago.) She has been moved to a rehab center in St. Louis. I'm so worried about her. She was such a great teacher, and I loved going to school to see her. She really made me work hard and she taught me so much! (She even put me in time out a couple of times when I was being stubborn. She sent home a note to Mom and Dad to tell them I wasn't cooperating one day. I know that sounds kind of mean, but I deserved it because she knew I could do the work, I was just being stubborn.)
After I had my tracheostomy last summer, I had to have school at home instead of going to Roosevelt. So I didn't get to ride on the bus with my friend Joe, and I didn't get to see Miss Kelly at school or my other friends all last year (but I didn't end up getting all the sicknesses everyone else got last year, so that's good!).
Miss Kelly is being very optimistic and says that when the swelling in her back goes down, she hopes to regain use of her legs. She has some feeling and some tingling, but her toes are still numb. She has two rods and seven pins in her back. Everybody, please say prayers for her!
Well, it's 9 p.m. and I should be asleep now. Good night, everyone!
My friend Eileen came to visit me on Sunday. She was the Sunday School teacher for third and fourth grade, so she brought the lesson to me. It was so nice to have her here, and she says she'll be back every other week with the lesson.
I've also seen my physical therapist (Jan), my speech therapist (Kathy) and my teacher (Paula). They're all trying to get me back into "summer school" mode. I'm not sure who my new occupational therapist will be since OT Sherri is going back and forth to the hospital every day to see her new babies at St. John's.
Now, here's the best part of the week: My Uncle Kevin was here from California! Not only did I get to see him, but he also came to see Grandma to wish her a happy birthday in person, and he was helping Grandma and Grandpa clean the garage. (Mom says that is NOT a fun job.) Ian spent the night at Grandma's house each night Uncle Kevin was here, but I stayed home with Mom. (He came to see me during the day, though!)
Aunt Jenny, Cousin Addison and Uncle Ryan (from Mississippi) will be here for Mom's birthday (firecracker day). Mom said that Grandma Powers, Uncle Don, Aunt Marie and Cousin Asher will be coming to visit me soon, too. They might all be here at the same time. Wow! This is going to be a great summer!
If YOU want to come visit me, just let Mom and Dad know. They'll make sure you don't come on the day of a doctor's appointment. Every now and then those things pop up on my busy social calendar! :)
I've had some really good days since I got home Friday night, and I've only had one episode that required the ambu-bag (and that one only needed a couple of "puffs"). We're all glad about that. It's good to breathe, you know? Take a deep breath and see how good that feels to fill up your lungs. We take that for granted, don't we? So not only should we stop to smell the roses every now and then, I guess we should also stop to take a deep breath, too, and just thank God that we're alive!
My mom talked to my former teacher, Kelly, yesterday. (She's the one who fell off the balcony and broke her back a couple of weeks ago.) She has been moved to a rehab center in St. Louis. I'm so worried about her. She was such a great teacher, and I loved going to school to see her. She really made me work hard and she taught me so much! (She even put me in time out a couple of times when I was being stubborn. She sent home a note to Mom and Dad to tell them I wasn't cooperating one day. I know that sounds kind of mean, but I deserved it because she knew I could do the work, I was just being stubborn.)
After I had my tracheostomy last summer, I had to have school at home instead of going to Roosevelt. So I didn't get to ride on the bus with my friend Joe, and I didn't get to see Miss Kelly at school or my other friends all last year (but I didn't end up getting all the sicknesses everyone else got last year, so that's good!).
Miss Kelly is being very optimistic and says that when the swelling in her back goes down, she hopes to regain use of her legs. She has some feeling and some tingling, but her toes are still numb. She has two rods and seven pins in her back. Everybody, please say prayers for her!
Well, it's 9 p.m. and I should be asleep now. Good night, everyone!
Saturday, June 16, 2007
Saturday, June 16, 2007
My mom rocked me in the rocking chair for four hours today, then Dad took over and rocked me for another hour. I was SO GLAD to be home where I am treated like royalty (which only makes sense, since I am a princess).
I've added a picture at the bottom of this screen, so be sure to scroll all the way to the bottom to see it. You can see a picture of the CT scan of my chest compared to a "normal" 9-year old. When you're looking at the picture, keep in mind that you're seeing the lungs, the spinal cord, and the sternum. The pictures aren't in the exact same "slice" so you can't sing the "wings" of my vertebrae like you can on the other kid, but it's pretty darn close to the same place. On the other kid, you can see a nice, round airway. On mine, you see my trach tube kind of off a bit to the side, and then you see some "smashed" looking bronchial tubes. I have 1.6 centimeters of space between my sternum (chest bone) and spinal cord, so everything is really cram-packed inside my body, which causes some rather extreme problems. From what I understand, the problems will just get worse as I continue to grow. My organs will try to get bigger, but my chest won't necessarily be growing with them. This is not a good thing. Most of the time, though, I just don't think about things like that. You know why? Because my family loves me so much, and I have such great nurses who also love me, and I have a whole lot of friends who love me, and Thor loves me. (He's been licking my legs today. I think he missed me while I was in the hospital.)
Sometimes it just doesn't make sense to worry about tomorrow. We have to just live for today and for the moments that make us smile, right?
Love to you all! I'll check in again sometime - maybe next weekend. Until we talk again - take care of yourself and smile a lot. Okay?
P.S. Please continue to pray for Grant and Cullen, the baby boy twins at St. Johns. They need to grow some more and get stronger before they can come home to live with their mom and dad. Also pray for my teacher, Kelly, who has been moved to a rehab center in St. Louis so that she can start working on getting feeling back in her legs. Thank you for your prayers.
I've added a picture at the bottom of this screen, so be sure to scroll all the way to the bottom to see it. You can see a picture of the CT scan of my chest compared to a "normal" 9-year old. When you're looking at the picture, keep in mind that you're seeing the lungs, the spinal cord, and the sternum. The pictures aren't in the exact same "slice" so you can't sing the "wings" of my vertebrae like you can on the other kid, but it's pretty darn close to the same place. On the other kid, you can see a nice, round airway. On mine, you see my trach tube kind of off a bit to the side, and then you see some "smashed" looking bronchial tubes. I have 1.6 centimeters of space between my sternum (chest bone) and spinal cord, so everything is really cram-packed inside my body, which causes some rather extreme problems. From what I understand, the problems will just get worse as I continue to grow. My organs will try to get bigger, but my chest won't necessarily be growing with them. This is not a good thing. Most of the time, though, I just don't think about things like that. You know why? Because my family loves me so much, and I have such great nurses who also love me, and I have a whole lot of friends who love me, and Thor loves me. (He's been licking my legs today. I think he missed me while I was in the hospital.)
Sometimes it just doesn't make sense to worry about tomorrow. We have to just live for today and for the moments that make us smile, right?
Love to you all! I'll check in again sometime - maybe next weekend. Until we talk again - take care of yourself and smile a lot. Okay?
P.S. Please continue to pray for Grant and Cullen, the baby boy twins at St. Johns. They need to grow some more and get stronger before they can come home to live with their mom and dad. Also pray for my teacher, Kelly, who has been moved to a rehab center in St. Louis so that she can start working on getting feeling back in her legs. Thank you for your prayers.
Friday, June 15, 2007
Friday, June 15, 2007
It's 8:30 p.m. Friday, and I'm home!!! We got home around 6 o'clock this evening. I'm so glad to be here with big brother and Thor again. Nurse Nicole is getting me ready for bed right now, and I'm excited about sleeping in my own bed with my own pillows and my own soft blanket. I got to snuggle with Dad and then Mom in the rocking chair - my favorite place.
Nobody will come in and take my temperature and feel my pulse and puff up the blood pressure cuff while I'm trying to sleep tonight! Isn't that wonderful? Yes!
I'll write more again sometime soon. There's just a lot to get unpacked and put away and sorted out around here with the new equipment and new routine. I thank everyone for your prayers. Check in again soon and take care of yourself.
Nobody will come in and take my temperature and feel my pulse and puff up the blood pressure cuff while I'm trying to sleep tonight! Isn't that wonderful? Yes!
I'll write more again sometime soon. There's just a lot to get unpacked and put away and sorted out around here with the new equipment and new routine. I thank everyone for your prayers. Check in again soon and take care of yourself.
Thursday, June 14, 2007
Thursday, June 14, 2007
It's 11:55 p.m. Thursday night. (If you need to catch up, please scroll down to get more details before starting on this message.)
I'm sleeping in my room in TCU (Transitional Care Unit) right now. I was moved out of ICU yesterday (Wednesday) around 3 p.m., right before Mom and Dad had a big pow-wow with my doctors. There were six doctors and Sister Judy from the Footprints Program in the meeting. I stayed in my room with the nurse. The big pow-wow was all about me (which, of course, I like to hear). They were trying to figure out where we are, where we're going and what the next step should be. It was a long meeting, and Mom and Dad say they still have some important things to work out. All I know is that they are trying to figure out the best way to get me home safely and to make sure I'm happy and comfortable (and breathing).
I was hooked up to a CPAP (Continuous Positive Air Pressure) machine to see how I tolerated it overnight and throughout the day today. I did okay on it - but Mom didn't like the way that she couldn't hear me cough with the machine on, and then the tubing would fill up with goo, and it was difficult to suction it out. Grandma came up this evening, and she learned how it worked. She got to learn all about the beeps and alarms in the TCU this time, too. (It's truly amazing that anyone can sleep in a hospital.) Grandma is staying with me tonight because Ian had another baseball game and Mom and Dad wanted to be there. His team won again!
The home equipment company respiratory therapist came to hook up a home CPAP machine to see how that worked for me. It didn't go very well, but just a few minutes ago, the Cardinal Glennon RT got it to work, and I'm still sleeping peacefully. I think I'm dreaming about Thor right now and how he barks at everyone who comes to our door, who walks by our house, who slams a car door down the street, etc. He thinks he is such a fierce watchdog! He's just an old softy, though! Anyway, I'm going to use this new machine all night and then, if it works well for me, tomorrow afternoon, Mom and Dad will get trained on the new equipment and MAYBE - JUST MAYBE I'll get to go home. I really, really want to go home. Ian really, really wants me to go home, too.
I'll check back in with everyone when something big happens or when I'm home and settled in again. Talk to you later! (And by the way - HAPPY BIRTHDAY TO GRANDMA ROSS ON JUNE 15!)
I'm sleeping in my room in TCU (Transitional Care Unit) right now. I was moved out of ICU yesterday (Wednesday) around 3 p.m., right before Mom and Dad had a big pow-wow with my doctors. There were six doctors and Sister Judy from the Footprints Program in the meeting. I stayed in my room with the nurse. The big pow-wow was all about me (which, of course, I like to hear). They were trying to figure out where we are, where we're going and what the next step should be. It was a long meeting, and Mom and Dad say they still have some important things to work out. All I know is that they are trying to figure out the best way to get me home safely and to make sure I'm happy and comfortable (and breathing).
I was hooked up to a CPAP (Continuous Positive Air Pressure) machine to see how I tolerated it overnight and throughout the day today. I did okay on it - but Mom didn't like the way that she couldn't hear me cough with the machine on, and then the tubing would fill up with goo, and it was difficult to suction it out. Grandma came up this evening, and she learned how it worked. She got to learn all about the beeps and alarms in the TCU this time, too. (It's truly amazing that anyone can sleep in a hospital.) Grandma is staying with me tonight because Ian had another baseball game and Mom and Dad wanted to be there. His team won again!
The home equipment company respiratory therapist came to hook up a home CPAP machine to see how that worked for me. It didn't go very well, but just a few minutes ago, the Cardinal Glennon RT got it to work, and I'm still sleeping peacefully. I think I'm dreaming about Thor right now and how he barks at everyone who comes to our door, who walks by our house, who slams a car door down the street, etc. He thinks he is such a fierce watchdog! He's just an old softy, though! Anyway, I'm going to use this new machine all night and then, if it works well for me, tomorrow afternoon, Mom and Dad will get trained on the new equipment and MAYBE - JUST MAYBE I'll get to go home. I really, really want to go home. Ian really, really wants me to go home, too.
I'll check back in with everyone when something big happens or when I'm home and settled in again. Talk to you later! (And by the way - HAPPY BIRTHDAY TO GRANDMA ROSS ON JUNE 15!)
Tuesday, June 12, 2007
Tuesday, June 12, 2007
It's 9:35 p.m. on Tuesday.
I've been moved to the Intensive Care Unit. Gee whiz!!! Now what??? They hooked me up to a CPAP machine as of about 8 p.m. - it keeps positive air pressure continuously pumping into my lungs, so all my airways HAVE to stay open. It's really a weird feeling, and since there's so much air pressure, some of the air escapes around my trach tube and comes out through my vocal cords. It sounds like I'm moaning. I can't really stop the sounds, but that's okay. I think it's funny. It makes me smile because I can hear my voice - sort of. (They probably won't keep this on me for a long time - they might even take it off me very soon to "test" me to see if I'm breathing okay.)
So, you may be asking, "What happened this time?" Well, here's the thing - Mom and Dad had talked to several doctors today about taking me home tomorrow. Everybody was gearing up for the big discharge. I did a four-hour EEG this morning (and pretty much, seizures and neurological problems were ruled out), and late this afternoon, the sleep lab tech came to hook me up to monitor my breathing to see if I had a central respiratory problem (which means I stop breathing because my body isn't trying to breathe) OR if I had an obstructive problem (which means that I keep trying to breathe, but something is blocking my airway). Dad said he could have told them that it was obstructive without the test, but that's okay. Now we'll have a real scientific report telling us the same thing.
So, things were going relatively smoothly. Dad and the nurses knew the drill - as soon as I started crying, they were to watch to see if I started gasping. If that happened, then they were to immediately get the ambu bag and give me a few "puffs" to open the airway and let the good, clean oxygen come into my lungs. Dad stepped out of the room for a few minutes to talk to a friend of his in the Emergency Room, and while he was gone, the respiratory therapist came to give me a breathing treatment. Then I was deep suctioned, and then I went into a full-blown event. I was not able to move air. My oxygen sats dropped quickly and my nurse was in the room within seconds. They bagged me for about 15 minutes, and every time they removed the bag to see if I was breathing on my own, I wasn't. My sats would drop again. I freaked everyone out a LOT this time, so they called in the ICU doctor and told him to take me away. I needed close monitoring after this one, and the ICU can do one-on-one monitoring (but they can't on 2-South).
So now I'm here in the ICU. It's not a comfortable room for Dad. He even has to go out of the unit just to go to the bathroom. My old room was really great - it was big and pretty comfortable. There was a big couch that pulled out to single bed size, so it was a fairly good place for Mom, Dad or Grandma to sleep next to me. There was a bathroom with a shower in the room, so they could even jump in the shower while the nurse was giving me my bath in the morning. There were even big windows, so I could see outside. Now we're back to the ICU where everything is really incovenient - they can't even have their cell phones on back here. Big bummer!
Mom was going to come up tomorrow to help pack me up and get me home. Now she's bringing her stuff with her to spend the night again, and Dad will go back home to be with Ian. It's his turn to hold down the fort at our house and do some work for his job.
I really don't know how long they'll keep me in the hospital now. I guess it's possible I could still get out of here tomorrow, but nobody really thinks that will happen.
I bet you're wondering what Mom and Dad are going to do with me when they get me home. The easiest way to put it is that they're going to be ready, at the drop of a hat, to grab the ambu-bag and start pumping air into me. If they do it right away, when I first start gasping, then I come out of it pretty quickly, (or at least I have to this point).
With my "smashed/floppy/compressed/soft" bronchial tubes, this is pretty much the only choice. There's nothing surgical to keep the airway open. If my body grows in a way that my chest compresses even more, or if my airway softens even more over time, then the problem will worsen, and at some point, well, maybe the ambu-bag won't work. That's the reality of the situation - unless someone can come up with a reasonable way to fix this problem. The bilateral chest expansion surgery that Mom and Dad looked into last year really isn't an option. Besides the fact that nobody wants to do the surgery because I'm too complex, the risks involved are way too high to take the chance.
What I say to you is this - I'm going to live each day being very, very happy because I am loved so much by my family and by so many other people. I'm going to do what I can to help my family and my nurses take care of me. I'm going to let my dog lick my hands and feet whenever he wants to. I'm going to sit next to my big brother and let him read to me. I'm going to snuggle with Dad and Mom in the rocking chair. I'm going to listen to Grandma sing to me and read me books. I'm going to keep learning how to recognize YES and NO. I'm going to swing in my swing and take strolls around the circle at our house. I'm going to do as many things as I possibly can, and I'm going to be happy, happy, happy every day.
Nobody knows what's going to happen tomorrow. I just heard today that my very wonderful teacher for the last four years was in a freak accident over the weekend. A balcony railing gave way and she fell from the balcony, breaking her back at the L1 vertebrae. She is not in great shape right now and will be going into rehab in St. Louis. She is young and a wonderful person. Now she will have all new challenges ahead of her. Her new "normal" will be very different from her "normal" of last week.
My other teacher died suddenly this past spring, without any advance notice at all. She was very young. Nobody saw it coming, and nobody could have changed it. It just happened. It was time.
My new "normal" is very different today than it was before last Wednesday. This may be the same "normal" for many, many years, or things may continue to evolve into a different "normal" over a short period of time. Something drastic could happen tomorrow that would change my "normal" significantly, or it could take tiny little baby steps in a different direction.
Maybe God will snap his fingers and say, "Be healed, Emma Powers!" Now THAT is a miracle Dad and Mom have prayed for for a long, long time.
We really don't know what's going to happen. So, while the mystery unfolds, will you help me enjoy every minute? There are 1,440 minutes in a day, 10,080 minutes in a week and 524,160 minutes in a year. Wow! That's a LOT of minutes. Let's make them count, okay?
Please pray that I get to come home very soon.
I've been moved to the Intensive Care Unit. Gee whiz!!! Now what??? They hooked me up to a CPAP machine as of about 8 p.m. - it keeps positive air pressure continuously pumping into my lungs, so all my airways HAVE to stay open. It's really a weird feeling, and since there's so much air pressure, some of the air escapes around my trach tube and comes out through my vocal cords. It sounds like I'm moaning. I can't really stop the sounds, but that's okay. I think it's funny. It makes me smile because I can hear my voice - sort of. (They probably won't keep this on me for a long time - they might even take it off me very soon to "test" me to see if I'm breathing okay.)
So, you may be asking, "What happened this time?" Well, here's the thing - Mom and Dad had talked to several doctors today about taking me home tomorrow. Everybody was gearing up for the big discharge. I did a four-hour EEG this morning (and pretty much, seizures and neurological problems were ruled out), and late this afternoon, the sleep lab tech came to hook me up to monitor my breathing to see if I had a central respiratory problem (which means I stop breathing because my body isn't trying to breathe) OR if I had an obstructive problem (which means that I keep trying to breathe, but something is blocking my airway). Dad said he could have told them that it was obstructive without the test, but that's okay. Now we'll have a real scientific report telling us the same thing.
So, things were going relatively smoothly. Dad and the nurses knew the drill - as soon as I started crying, they were to watch to see if I started gasping. If that happened, then they were to immediately get the ambu bag and give me a few "puffs" to open the airway and let the good, clean oxygen come into my lungs. Dad stepped out of the room for a few minutes to talk to a friend of his in the Emergency Room, and while he was gone, the respiratory therapist came to give me a breathing treatment. Then I was deep suctioned, and then I went into a full-blown event. I was not able to move air. My oxygen sats dropped quickly and my nurse was in the room within seconds. They bagged me for about 15 minutes, and every time they removed the bag to see if I was breathing on my own, I wasn't. My sats would drop again. I freaked everyone out a LOT this time, so they called in the ICU doctor and told him to take me away. I needed close monitoring after this one, and the ICU can do one-on-one monitoring (but they can't on 2-South).
So now I'm here in the ICU. It's not a comfortable room for Dad. He even has to go out of the unit just to go to the bathroom. My old room was really great - it was big and pretty comfortable. There was a big couch that pulled out to single bed size, so it was a fairly good place for Mom, Dad or Grandma to sleep next to me. There was a bathroom with a shower in the room, so they could even jump in the shower while the nurse was giving me my bath in the morning. There were even big windows, so I could see outside. Now we're back to the ICU where everything is really incovenient - they can't even have their cell phones on back here. Big bummer!
Mom was going to come up tomorrow to help pack me up and get me home. Now she's bringing her stuff with her to spend the night again, and Dad will go back home to be with Ian. It's his turn to hold down the fort at our house and do some work for his job.
I really don't know how long they'll keep me in the hospital now. I guess it's possible I could still get out of here tomorrow, but nobody really thinks that will happen.
I bet you're wondering what Mom and Dad are going to do with me when they get me home. The easiest way to put it is that they're going to be ready, at the drop of a hat, to grab the ambu-bag and start pumping air into me. If they do it right away, when I first start gasping, then I come out of it pretty quickly, (or at least I have to this point).
With my "smashed/floppy/compressed/soft" bronchial tubes, this is pretty much the only choice. There's nothing surgical to keep the airway open. If my body grows in a way that my chest compresses even more, or if my airway softens even more over time, then the problem will worsen, and at some point, well, maybe the ambu-bag won't work. That's the reality of the situation - unless someone can come up with a reasonable way to fix this problem. The bilateral chest expansion surgery that Mom and Dad looked into last year really isn't an option. Besides the fact that nobody wants to do the surgery because I'm too complex, the risks involved are way too high to take the chance.
What I say to you is this - I'm going to live each day being very, very happy because I am loved so much by my family and by so many other people. I'm going to do what I can to help my family and my nurses take care of me. I'm going to let my dog lick my hands and feet whenever he wants to. I'm going to sit next to my big brother and let him read to me. I'm going to snuggle with Dad and Mom in the rocking chair. I'm going to listen to Grandma sing to me and read me books. I'm going to keep learning how to recognize YES and NO. I'm going to swing in my swing and take strolls around the circle at our house. I'm going to do as many things as I possibly can, and I'm going to be happy, happy, happy every day.
Nobody knows what's going to happen tomorrow. I just heard today that my very wonderful teacher for the last four years was in a freak accident over the weekend. A balcony railing gave way and she fell from the balcony, breaking her back at the L1 vertebrae. She is not in great shape right now and will be going into rehab in St. Louis. She is young and a wonderful person. Now she will have all new challenges ahead of her. Her new "normal" will be very different from her "normal" of last week.
My other teacher died suddenly this past spring, without any advance notice at all. She was very young. Nobody saw it coming, and nobody could have changed it. It just happened. It was time.
My new "normal" is very different today than it was before last Wednesday. This may be the same "normal" for many, many years, or things may continue to evolve into a different "normal" over a short period of time. Something drastic could happen tomorrow that would change my "normal" significantly, or it could take tiny little baby steps in a different direction.
Maybe God will snap his fingers and say, "Be healed, Emma Powers!" Now THAT is a miracle Dad and Mom have prayed for for a long, long time.
We really don't know what's going to happen. So, while the mystery unfolds, will you help me enjoy every minute? There are 1,440 minutes in a day, 10,080 minutes in a week and 524,160 minutes in a year. Wow! That's a LOT of minutes. Let's make them count, okay?
Please pray that I get to come home very soon.
Monday, June 11, 2007
Monday, June 11, 2007
It's 10:30 p.m. on Monday, and Dad is lying on the bed next to me in the hospital. He was just watching my heart rate skip all over the place, but it was really hanging up there in the "high" range (140-155), which is totally abnormal when I'm asleep. He took my temperature - normal. I was asleep, so I didn't seem to be in pain. But wait - Aha! He took off my "nose" (the Thermovent at the end of my trach tube), and my heart rate went down and my oxygen saturation went up almost immediately. Not sure why that happened tonight, but I'm glad Dad was paying attention and right on top of the situation. He always seems to know how to help me.
Mom was here yesterday evening when she and Dad swapped places. She spent the night with me last night, and I was pretty good for her. I didn't have any de-sat events, and I slept pretty well until 4 a.m. I was really gloppy all night, but it didn't bother me at all. Mom got up several times to suction me, and she watched me breathe most of the night. Of course the nurse was in here every hour on the hour to check on me, too. They take very good care of me here.
Today was an extremely busy day. After my sponge bath (did I mention that I really miss my shower chair at home? I do - I really do), the neurology team stopped by. There was a whole troop of neurologists wandering around. They were very interested in getting an EEG on me, so that was set up. I've had several EEGs in the past, and they're not the most fun - mostly because they draw on my head with a red marker, then they put all this thick, gooey stuff in my hair, then they attach electrodes all over my head. These have long wires attached to them. They aim a camera at me and record everything. They wanted to have a reading of what my brain does right before, during and after one of my gasping episodes. Guess what. They had it hooked up for two and a half hours, and I didn't have a single episode. They were going to leave it on me all day, but I had to leave the room for another test, so they had to take everything off. Right after they disconnected me and left the room, well, that's when I had a gasping episode. Leave it to me!!!
Mom's friend Dana came to the hospital to visit, so she got to go over to St. Louis University Hospital with us (Mom and two nurses). That's where I went for a barium study showing how my stomach empties into my intestines. I was on a transport bed. The nurse put three ounces of formula and barium mixture into my stomach, then the technician put me under a big machine. He lowered it to right above my tummy and face and I had to stare at it for an hour and a half while the machine took pictures of my tummy every two minutes. From what Mom, Dana and the nurses saw, not a single bit of the formula had moved into the intestines after all that time, so I definitely have a motility issue. We're hoping that the change in formula and a smaller amount per feeding will help with that. It's trial and error with me, of course, so if that doesn't work, we'll move to the next step. I'm also on a new antacid to reduce the acid that touches my skin should I "spring a leak" again at my feeding button site.
When we got back to my room, the pulmonologist was ready to do a bronchoscopy. He ran a camera down my trachea to check things out. I cried a bit, so he could really see what happens when I'm "fussy." On the screen we could see that my trachea and bronchi are a bit compressed, especially when I'm crying. With all the secretions down there, it gets pretty squeezed. The doctor said that using the ambu-bag to help me breathe gives me just the right amount of pressure to open up those compressed areas to let the oxygen get to my lungs. He's still working out some theories on what to do. We don't know if something happens in my body that makes me aware of an upcoming breathing problem, which makes me cry OR if I start crying (for whatever reason) and that makes me gasp sometimes OR if allergies thicken my secretions to cause the gasping OR if there's a neurological trigger that kicks the episodes into gear. It's quite they mystery and everybody seems to be scratching heads and looking confused.
Mom had the doctor draw some pictures so she could explain his initial theories to Dad when he arrived tonight.
So right now I'm sleeping, and I'm waiting for tomorrow morning when they hook up the EEG again. More goo in my hair. (Dad will have a fun time trying to wash it out!!! It's a good thing Mom brought my detangler with her.) Maybe that test will show something important?
I guess I'll just hang out until somebody tells me I'm going home - which is really where I want to be. I miss my house and my dog, Thor. I want to sleep in my own bed and have a real shower with the spraying water, not the boring old bed baths. I want to see my teacher and therapists again, and I want to play with my nurses.
Speaking of my therapists...Mom saw Sherri and the baby boys yesterday on her way to be with me. She said Sherri is doing MUCH better and the twins (Grant and Cullen) are doing very well. She got to touch Grant's foot. She said the babies are very small, but not as small as she thought they would be - plus their skin looked really good. She thought it would be paper thin. They were in pretty good shape for being so early. They will be in the hospital for a long time. I know they'll be glad when they get to go home to their family and their own beds for the first time.
I want to be out of the hospital as soon as possible because Grandma's birthday is this Friday and Father's Day is Sunday. I dont' want to be up here for those two celebrations! Grandpa is going to Los Angeles to see my uncles (Kevin and Brad) and aunt (Janet). Uncle Scott is in Chicago this summer working on Batman. Mom and Ian are supposed to visit him for a couple of days in July. It's an exciting summer, and I want to be part of it. Please pray that I get to go home very soon. Thank you!!!
Mom was here yesterday evening when she and Dad swapped places. She spent the night with me last night, and I was pretty good for her. I didn't have any de-sat events, and I slept pretty well until 4 a.m. I was really gloppy all night, but it didn't bother me at all. Mom got up several times to suction me, and she watched me breathe most of the night. Of course the nurse was in here every hour on the hour to check on me, too. They take very good care of me here.
Today was an extremely busy day. After my sponge bath (did I mention that I really miss my shower chair at home? I do - I really do), the neurology team stopped by. There was a whole troop of neurologists wandering around. They were very interested in getting an EEG on me, so that was set up. I've had several EEGs in the past, and they're not the most fun - mostly because they draw on my head with a red marker, then they put all this thick, gooey stuff in my hair, then they attach electrodes all over my head. These have long wires attached to them. They aim a camera at me and record everything. They wanted to have a reading of what my brain does right before, during and after one of my gasping episodes. Guess what. They had it hooked up for two and a half hours, and I didn't have a single episode. They were going to leave it on me all day, but I had to leave the room for another test, so they had to take everything off. Right after they disconnected me and left the room, well, that's when I had a gasping episode. Leave it to me!!!
Mom's friend Dana came to the hospital to visit, so she got to go over to St. Louis University Hospital with us (Mom and two nurses). That's where I went for a barium study showing how my stomach empties into my intestines. I was on a transport bed. The nurse put three ounces of formula and barium mixture into my stomach, then the technician put me under a big machine. He lowered it to right above my tummy and face and I had to stare at it for an hour and a half while the machine took pictures of my tummy every two minutes. From what Mom, Dana and the nurses saw, not a single bit of the formula had moved into the intestines after all that time, so I definitely have a motility issue. We're hoping that the change in formula and a smaller amount per feeding will help with that. It's trial and error with me, of course, so if that doesn't work, we'll move to the next step. I'm also on a new antacid to reduce the acid that touches my skin should I "spring a leak" again at my feeding button site.
When we got back to my room, the pulmonologist was ready to do a bronchoscopy. He ran a camera down my trachea to check things out. I cried a bit, so he could really see what happens when I'm "fussy." On the screen we could see that my trachea and bronchi are a bit compressed, especially when I'm crying. With all the secretions down there, it gets pretty squeezed. The doctor said that using the ambu-bag to help me breathe gives me just the right amount of pressure to open up those compressed areas to let the oxygen get to my lungs. He's still working out some theories on what to do. We don't know if something happens in my body that makes me aware of an upcoming breathing problem, which makes me cry OR if I start crying (for whatever reason) and that makes me gasp sometimes OR if allergies thicken my secretions to cause the gasping OR if there's a neurological trigger that kicks the episodes into gear. It's quite they mystery and everybody seems to be scratching heads and looking confused.
Mom had the doctor draw some pictures so she could explain his initial theories to Dad when he arrived tonight.
So right now I'm sleeping, and I'm waiting for tomorrow morning when they hook up the EEG again. More goo in my hair. (Dad will have a fun time trying to wash it out!!! It's a good thing Mom brought my detangler with her.) Maybe that test will show something important?
I guess I'll just hang out until somebody tells me I'm going home - which is really where I want to be. I miss my house and my dog, Thor. I want to sleep in my own bed and have a real shower with the spraying water, not the boring old bed baths. I want to see my teacher and therapists again, and I want to play with my nurses.
Speaking of my therapists...Mom saw Sherri and the baby boys yesterday on her way to be with me. She said Sherri is doing MUCH better and the twins (Grant and Cullen) are doing very well. She got to touch Grant's foot. She said the babies are very small, but not as small as she thought they would be - plus their skin looked really good. She thought it would be paper thin. They were in pretty good shape for being so early. They will be in the hospital for a long time. I know they'll be glad when they get to go home to their family and their own beds for the first time.
I want to be out of the hospital as soon as possible because Grandma's birthday is this Friday and Father's Day is Sunday. I dont' want to be up here for those two celebrations! Grandpa is going to Los Angeles to see my uncles (Kevin and Brad) and aunt (Janet). Uncle Scott is in Chicago this summer working on Batman. Mom and Ian are supposed to visit him for a couple of days in July. It's an exciting summer, and I want to be part of it. Please pray that I get to go home very soon. Thank you!!!
Saturday, June 9, 2007
Saturday, June 9, 2007
It's 5:40 p.m. on Saturday, and guess where I am. I'm lying in my bed at the Cardinal Glennon Resort and Spa (AKA Cardinal Glennon Children's Medical Center), where I like to check in at least once a year for an extended stay to get "pampered" (AKA checked out from head to toe). Right now Grandma is reading books to me, brushing my hair and telling me silly stories.
I bet you're thinking, "Hospital? Why is Emma back in the hospital? I thought everything was going pretty well. What's going on with that crazy girl?"
Well, that's a good question. Once more, I have become a mystery to many. Everything WAS going pretty well other than my tummy issues, and then on Wednesday, the winds of change blew in. Nurse Sandy was taking care of me, and for some reason, my body decided it was time to have a gasping episode - pretty darn similar to the ones of the past (for those of you who have kept up with my medical history). She ended up using the ambu-bag on me (the thing with the big squeezy balloon on it that pushes air into my lungs). She pumped air into my trach tube and hooked up the oxygen to get some O2 in my body. My O2 saturation had dropped a lot. She got me sorted out and hooked me up to my oxygen monitor. I went back to 95% and was looking good. She talked to Mom (who was in Hannibal on a Horizons Club trip). They talked about what happened, and Mom thought maybe I had a mucus plug blocking my airway. Since I was doing well, everybody seemed to be pretty happy and calm.
Then came Thursday morning. Nurse Caroline was here taking care of me and Grandma was here taking care of Ian (Dad was still in New Jersey and Mom was still on her Horizons Club trip). I had a very bad gasping episode, and Caroline and Grandma ended up calling the ambulance. By the time the EMT got to me, I was starting to "pink up" again and I was doing pretty well - back to good, strong O2 readings and looking and acting myself. So the EMT talked to Mom on the phone and they decided not to take me for an ambulance ride. Instead, they were going to have Grandma and Nurse Sandy take me to CGCMC in St. Louis later in the morning. Something was wrong and I needed to see one of my doctors in St. Louis.
Grandpa drove to Hannibal to pick up Mom, Dad caught the first plane out of Jersey, and all of us ended up at the hospital within about an hour of each other. I had some chest x-rays and bloodwork, then the doctor came in and said, "Has Emma lost any teeth lately?" Mom told him I hadn't lost a tooth for a couple of months. He said it looked like there was a tooth stuck in my esophagus, so Grandpa went to look at the x-ray. Sure enough! There was a tooth stuck in my throat!!! He looked at my mouth and said that it had come out within the last few days, so I guess I had worked a tooth loose during my sleep and swallowed it while I was asleep one night this week. I don't bleed much when I lose a tooth, so I guess nobody even noticed because my permanent tooth was already popping through. Weird, huh?
Everyone was thinking, "Hooray! We know what's causing the problem! Let's get the tooth out and everything will be fine!"
But you know me!!! I had to make it a little more difficult than that. First they did a CT scan to confirm the position of the tooth. It really was in the esophagus and not in the trachea. It MIGHT have something to do with the breathing issues, but it might NOT.
On Friday I had about seven gasping episodes before the procedure. Yesterday afternoon I went to the OR where the ENT doctor used a scope to go down my throat and grab that tooth. It was lodged in my throat and had caused just a little sore, but nothing big. It just wasn't going to move on its own since I don't swallow anything but my own spit. It was defininitely NOT the reason for my gasping, though. It wasn't anywhere close to the bronchi. (SIDENOTE: When they were going into my mouth with the scope, they saw another loose tooth and got it out while they were in there. Mom had just checked my teeth the day before and there wasn't a loose tooth, so I had really loosened one up quickly! I left the OR with a special purple pouch from the tooth fairy. It had $3 and a bunch of princess stickers in it!) Mom said that wasn't enough to pay the deductible and co-pay, but it was a start!
Since Mom stayed at the hospital with me on Thursday night, Friday night was Dad's turn. I had a bad gasping episode Friday night and really scared my nurse. She was a new nurse and I completely freaked her out. (I'm not in the "heavy-duty care" section this time - I've usually been in the Intensive Care or Transitional Care Units, but this time I'm just in the "regular care" section - I think this nurse wasn't used to seeing a "Code Blue.") Dad helped get me out of it and took good care of me, along with the roomful of nurses and doctors who joined the party.
This morning I had several more gasping episodes before Mom got back to the hospital. Again, Dad took great care of me. He even cleaned me up and fixed my hair for me. He's such a good daddy!
So now the pressing question is, why am I doing this again?
The ENT said that my trach tube is perfectly positioned to keep my airway open. It is still holding that "smashed" area open at the bottom of my trachea. The tube goes all the way to the corina, where the bronchial tubes split out into the lungs. So structurally and mechanically, things should work.
Dad is exploring the allergy connection because my gasping episodes always start up in late spring/early summer. Could there be a connection? It's possible. Very possible. However, my gasping episodes start with crying and then turn into a production - in living color (BLUE - not my best color). If someone can distract me out of the crying spell, though, then I don't go into a full-blown gasping episode. Can you distract an allergy attack? So I got to meet an allergist today, and she is ordering a blood test that will show the Midwest panel of allergens. It will take a couple of weeks to get the results back, though. I hope I don't have to stay in the hospital that whole time! Yikes!
Mom says maybe it's neurological. Maybe my brain is just misfiring and causing some kind of freaky hiccup in my system shutting down my breathing mechanism. I guess that's possible. Could that be something that can be distracted?
Dad said that maybe the tooth getting lodged in my throat triggered some kind of reaction that made me remember the gasping episodes of the past, and it threw me into an anxiety attack that scared me, made me cry, and the panic overwhelmed me and caused me to gasp for breath.
I don't know what's going on, to tell you the truth. I wish I did. But if I did know, I'd have to figure out a way to tell somebody what I think it is. Sometimes Mom and Dad just don't know what I'm thinking or what I'm trying to say. It's frustrating (but it can be funny, too, because they start making up things and telling me what I'm thinking, and it is SO WRONG sometimes. I let them go with it, though, because it entertains me).
I also got to see the GI doctor today while Mom was here with me. She was a very nice doctor, and she is trying to figure out why I'm having these leaking problems with the stomach acid burning my skin. We're going to try another formula change to help move things through my stomach faster, and we'll probably start an antacid to reduce the acid leaking out. Those are steps one and two. There are several more to try, but they get riskier, so we'll see how these work first.
So that's where things are with me. I'm haning out at the hospital until they figure out what's wrong OR until Mom and Dad decide to take me home. I just don't want to have these gasping episodes at home because I scare everybody so badly (including me). We don't have an endless supply of oxygen at my house being pumped through the walls.
Please pray that somebody somewhere figures out what the problem is!
Now, on a sidenote. My very good friend Sherri (who is also my Occupational Therapist) went into premature labor on Wednesday, the same day I started with my problems. I was so worried about her. She was only 26 weeks along, and she had two babies in there. (Mom talked to her Thursday morning and told her that her babies were just so excited about coming out to meet their mommy, they were going to come out early!) Her doctors were able to keep the babies in there for a few more days, but today they came out! Sherri and Perry now have two tiny little baby boys. One was 2-5 and the other 2-4. Both had full heads of hair and they are not on ventillators. Isn't that wonderful?! Thank you, God, for watching over them. Please pray for the babies to be healthy and strong, pray for Sherri to recover from the taxing ordeal, and please fray for Perry to be strong for his family. I can't wait to hear what they name the babies, and I really can't wait to meet them! I bet they'll get to sit on my lap someday!
NOTE ON SUNDAY, JUNE 10: Here's a quick update for Sunday. The team of doctors came in this morning. They are going to have the barium study scheduled for Monday. They have also requested a neurology consult, so hopefully my neurologist is on call today. My pulmonologist was here today and he said, "Well, if anyone can do anything differently than anyone else, it's our mystery girl Emma." He is very worried about me and wants to figure this out. Maybe my bronchial tubes are collapsing? Who knows? The pulmonologist said that ENT had asked for a sleep study, but he's not sure that's the right test since 99.9% of these episodes are when I'm awake. So maybe there's another test? (That's why Mom wanted neurology to come look at me.) I started on my new formula today, and an antacid. My tummy looks a lot better - simply because I've been on IV fluids for several days and there really hasn't been much to fill up my tummy and leak out! But my skin feels better.
Grandma stayed with me last night so that Mom and Dad could go to Ian's baseball game. Ian got THREE HOMERUNS! He said one of them was especially for me. The other two were for his team. He's on the Marlins. They beat the Mets 33-2! Wow! I wish I could have seen it.
That's the update for today. Dad and Ian are on their way up to the hospital, and Mom will be here later today to spend the night with me. She is going to work for a while and then she is going to see Sherri and the babies at the other hospital. Mom and Dad said you could call them if you want to talk to them. You can also call my room and talk to me! (Just try to call between 8 a.m. and 8 p.m.)
I bet you're thinking, "Hospital? Why is Emma back in the hospital? I thought everything was going pretty well. What's going on with that crazy girl?"
Well, that's a good question. Once more, I have become a mystery to many. Everything WAS going pretty well other than my tummy issues, and then on Wednesday, the winds of change blew in. Nurse Sandy was taking care of me, and for some reason, my body decided it was time to have a gasping episode - pretty darn similar to the ones of the past (for those of you who have kept up with my medical history). She ended up using the ambu-bag on me (the thing with the big squeezy balloon on it that pushes air into my lungs). She pumped air into my trach tube and hooked up the oxygen to get some O2 in my body. My O2 saturation had dropped a lot. She got me sorted out and hooked me up to my oxygen monitor. I went back to 95% and was looking good. She talked to Mom (who was in Hannibal on a Horizons Club trip). They talked about what happened, and Mom thought maybe I had a mucus plug blocking my airway. Since I was doing well, everybody seemed to be pretty happy and calm.
Then came Thursday morning. Nurse Caroline was here taking care of me and Grandma was here taking care of Ian (Dad was still in New Jersey and Mom was still on her Horizons Club trip). I had a very bad gasping episode, and Caroline and Grandma ended up calling the ambulance. By the time the EMT got to me, I was starting to "pink up" again and I was doing pretty well - back to good, strong O2 readings and looking and acting myself. So the EMT talked to Mom on the phone and they decided not to take me for an ambulance ride. Instead, they were going to have Grandma and Nurse Sandy take me to CGCMC in St. Louis later in the morning. Something was wrong and I needed to see one of my doctors in St. Louis.
Grandpa drove to Hannibal to pick up Mom, Dad caught the first plane out of Jersey, and all of us ended up at the hospital within about an hour of each other. I had some chest x-rays and bloodwork, then the doctor came in and said, "Has Emma lost any teeth lately?" Mom told him I hadn't lost a tooth for a couple of months. He said it looked like there was a tooth stuck in my esophagus, so Grandpa went to look at the x-ray. Sure enough! There was a tooth stuck in my throat!!! He looked at my mouth and said that it had come out within the last few days, so I guess I had worked a tooth loose during my sleep and swallowed it while I was asleep one night this week. I don't bleed much when I lose a tooth, so I guess nobody even noticed because my permanent tooth was already popping through. Weird, huh?
Everyone was thinking, "Hooray! We know what's causing the problem! Let's get the tooth out and everything will be fine!"
But you know me!!! I had to make it a little more difficult than that. First they did a CT scan to confirm the position of the tooth. It really was in the esophagus and not in the trachea. It MIGHT have something to do with the breathing issues, but it might NOT.
On Friday I had about seven gasping episodes before the procedure. Yesterday afternoon I went to the OR where the ENT doctor used a scope to go down my throat and grab that tooth. It was lodged in my throat and had caused just a little sore, but nothing big. It just wasn't going to move on its own since I don't swallow anything but my own spit. It was defininitely NOT the reason for my gasping, though. It wasn't anywhere close to the bronchi. (SIDENOTE: When they were going into my mouth with the scope, they saw another loose tooth and got it out while they were in there. Mom had just checked my teeth the day before and there wasn't a loose tooth, so I had really loosened one up quickly! I left the OR with a special purple pouch from the tooth fairy. It had $3 and a bunch of princess stickers in it!) Mom said that wasn't enough to pay the deductible and co-pay, but it was a start!
Since Mom stayed at the hospital with me on Thursday night, Friday night was Dad's turn. I had a bad gasping episode Friday night and really scared my nurse. She was a new nurse and I completely freaked her out. (I'm not in the "heavy-duty care" section this time - I've usually been in the Intensive Care or Transitional Care Units, but this time I'm just in the "regular care" section - I think this nurse wasn't used to seeing a "Code Blue.") Dad helped get me out of it and took good care of me, along with the roomful of nurses and doctors who joined the party.
This morning I had several more gasping episodes before Mom got back to the hospital. Again, Dad took great care of me. He even cleaned me up and fixed my hair for me. He's such a good daddy!
So now the pressing question is, why am I doing this again?
The ENT said that my trach tube is perfectly positioned to keep my airway open. It is still holding that "smashed" area open at the bottom of my trachea. The tube goes all the way to the corina, where the bronchial tubes split out into the lungs. So structurally and mechanically, things should work.
Dad is exploring the allergy connection because my gasping episodes always start up in late spring/early summer. Could there be a connection? It's possible. Very possible. However, my gasping episodes start with crying and then turn into a production - in living color (BLUE - not my best color). If someone can distract me out of the crying spell, though, then I don't go into a full-blown gasping episode. Can you distract an allergy attack? So I got to meet an allergist today, and she is ordering a blood test that will show the Midwest panel of allergens. It will take a couple of weeks to get the results back, though. I hope I don't have to stay in the hospital that whole time! Yikes!
Mom says maybe it's neurological. Maybe my brain is just misfiring and causing some kind of freaky hiccup in my system shutting down my breathing mechanism. I guess that's possible. Could that be something that can be distracted?
Dad said that maybe the tooth getting lodged in my throat triggered some kind of reaction that made me remember the gasping episodes of the past, and it threw me into an anxiety attack that scared me, made me cry, and the panic overwhelmed me and caused me to gasp for breath.
I don't know what's going on, to tell you the truth. I wish I did. But if I did know, I'd have to figure out a way to tell somebody what I think it is. Sometimes Mom and Dad just don't know what I'm thinking or what I'm trying to say. It's frustrating (but it can be funny, too, because they start making up things and telling me what I'm thinking, and it is SO WRONG sometimes. I let them go with it, though, because it entertains me).
I also got to see the GI doctor today while Mom was here with me. She was a very nice doctor, and she is trying to figure out why I'm having these leaking problems with the stomach acid burning my skin. We're going to try another formula change to help move things through my stomach faster, and we'll probably start an antacid to reduce the acid leaking out. Those are steps one and two. There are several more to try, but they get riskier, so we'll see how these work first.
So that's where things are with me. I'm haning out at the hospital until they figure out what's wrong OR until Mom and Dad decide to take me home. I just don't want to have these gasping episodes at home because I scare everybody so badly (including me). We don't have an endless supply of oxygen at my house being pumped through the walls.
Please pray that somebody somewhere figures out what the problem is!
Now, on a sidenote. My very good friend Sherri (who is also my Occupational Therapist) went into premature labor on Wednesday, the same day I started with my problems. I was so worried about her. She was only 26 weeks along, and she had two babies in there. (Mom talked to her Thursday morning and told her that her babies were just so excited about coming out to meet their mommy, they were going to come out early!) Her doctors were able to keep the babies in there for a few more days, but today they came out! Sherri and Perry now have two tiny little baby boys. One was 2-5 and the other 2-4. Both had full heads of hair and they are not on ventillators. Isn't that wonderful?! Thank you, God, for watching over them. Please pray for the babies to be healthy and strong, pray for Sherri to recover from the taxing ordeal, and please fray for Perry to be strong for his family. I can't wait to hear what they name the babies, and I really can't wait to meet them! I bet they'll get to sit on my lap someday!
NOTE ON SUNDAY, JUNE 10: Here's a quick update for Sunday. The team of doctors came in this morning. They are going to have the barium study scheduled for Monday. They have also requested a neurology consult, so hopefully my neurologist is on call today. My pulmonologist was here today and he said, "Well, if anyone can do anything differently than anyone else, it's our mystery girl Emma." He is very worried about me and wants to figure this out. Maybe my bronchial tubes are collapsing? Who knows? The pulmonologist said that ENT had asked for a sleep study, but he's not sure that's the right test since 99.9% of these episodes are when I'm awake. So maybe there's another test? (That's why Mom wanted neurology to come look at me.) I started on my new formula today, and an antacid. My tummy looks a lot better - simply because I've been on IV fluids for several days and there really hasn't been much to fill up my tummy and leak out! But my skin feels better.
Grandma stayed with me last night so that Mom and Dad could go to Ian's baseball game. Ian got THREE HOMERUNS! He said one of them was especially for me. The other two were for his team. He's on the Marlins. They beat the Mets 33-2! Wow! I wish I could have seen it.
That's the update for today. Dad and Ian are on their way up to the hospital, and Mom will be here later today to spend the night with me. She is going to work for a while and then she is going to see Sherri and the babies at the other hospital. Mom and Dad said you could call them if you want to talk to them. You can also call my room and talk to me! (Just try to call between 8 a.m. and 8 p.m.)
Monday, June 4, 2007
June 4, 2007
This past weekend was Country Days in Farmington. It's a big festival with a parade, games, carnival rides, music, etc. Ian and Mom were busy on Friday and Saturday with all the festivities because Mom's work is very involved with it. On Saturday, Ian won third place in the pedal tractor pull contest. He brought home a trophy with a gold tractor on it. He didn't have anything like that. I've only seen soccer and baseball trophies in his room. This one is very different! I never knew my brother was a farmer deep down. Ha!
Luckily the rain seemed to magically miss us the whole weekend, so I was able to go outside quite a bit. Today I went outside and my eyelids ended up getting very puffy. I must be allergic to something out there today.
I've been doing pretty well lately, except for one major problem - my stomach. Just when Mom and Dad thought the new formula had solved the issue with stuff leaking out of my stomach around my feeding tube, it started all over again. My skin was really healed up nicely, and it felt great. Then last Monday, it started leaking again and - BAM! The stomach acid started eating up the skin around my feeding tube again. Today it looks horrible. Mom said it makes her cry to look at it, and I'll tell you. . . it makes me cry, too. It really hurts. My skin is really torn up about an inch around the hole in my stomach. Mom and Dad, Grandma and all the nurses have tried so many things to help it, but nothing seems to be working. Mom was pulling her hair out trying to think of something. Now we're just trying to keep it clean and dry - no dressings, no creams. They're hoping that might help. I basically have to lie on my wedge all day because every time I sit in my chair, my button leaks.
For instance, Mom had to put me in my chair when she got home from work because she had to make dinner for Ian (and herself). So I had to go into the kitchen with her. When she fed me my green bean puree through the tube and gave me my medicine, it only took about 60 seconds before green beens started leaking out around the tube. She was trying really hard to keep it cleaned up.
Please pray for my tummy to get better. It's making me - and everyone else - crazy!
Dad is back in New Jersey this week. He had to have emergency dental surgery yesterday and oh my, he was not a happy camper. Luckily he has the very best dentist in town! (Plus, since he had his "procedure" on Sunday after church, Mom even helped as Grandpa's assistant. She said she hadn't done that for 20 years!) Dad had to sleep a lot yesterday, but he said it feels better today. I'm glad he didn't have any problems on the plane!
Mom is going on a Horizons Club trip this week to Hannibal and Nauvoo, Illinois. She said that the other directors had to go to Hawaii on a cruise, while some others have to go to Ireland in the Fall. She gets to go to Hannibal, though, so she's just sure everyone is really jealous! She will be gone Wednesday and Thursday, but never fear - Grandma and Grandpa will make sure everything runs smoothly once again.
I hope everyone has a wonderful week. Love to you all! (Don't forget to leave me a message. I love to have Mom read me my "fan mail.")
Luckily the rain seemed to magically miss us the whole weekend, so I was able to go outside quite a bit. Today I went outside and my eyelids ended up getting very puffy. I must be allergic to something out there today.
I've been doing pretty well lately, except for one major problem - my stomach. Just when Mom and Dad thought the new formula had solved the issue with stuff leaking out of my stomach around my feeding tube, it started all over again. My skin was really healed up nicely, and it felt great. Then last Monday, it started leaking again and - BAM! The stomach acid started eating up the skin around my feeding tube again. Today it looks horrible. Mom said it makes her cry to look at it, and I'll tell you. . . it makes me cry, too. It really hurts. My skin is really torn up about an inch around the hole in my stomach. Mom and Dad, Grandma and all the nurses have tried so many things to help it, but nothing seems to be working. Mom was pulling her hair out trying to think of something. Now we're just trying to keep it clean and dry - no dressings, no creams. They're hoping that might help. I basically have to lie on my wedge all day because every time I sit in my chair, my button leaks.
For instance, Mom had to put me in my chair when she got home from work because she had to make dinner for Ian (and herself). So I had to go into the kitchen with her. When she fed me my green bean puree through the tube and gave me my medicine, it only took about 60 seconds before green beens started leaking out around the tube. She was trying really hard to keep it cleaned up.
Please pray for my tummy to get better. It's making me - and everyone else - crazy!
Dad is back in New Jersey this week. He had to have emergency dental surgery yesterday and oh my, he was not a happy camper. Luckily he has the very best dentist in town! (Plus, since he had his "procedure" on Sunday after church, Mom even helped as Grandpa's assistant. She said she hadn't done that for 20 years!) Dad had to sleep a lot yesterday, but he said it feels better today. I'm glad he didn't have any problems on the plane!
Mom is going on a Horizons Club trip this week to Hannibal and Nauvoo, Illinois. She said that the other directors had to go to Hawaii on a cruise, while some others have to go to Ireland in the Fall. She gets to go to Hannibal, though, so she's just sure everyone is really jealous! She will be gone Wednesday and Thursday, but never fear - Grandma and Grandpa will make sure everything runs smoothly once again.
I hope everyone has a wonderful week. Love to you all! (Don't forget to leave me a message. I love to have Mom read me my "fan mail.")
Wednesday, May 30, 2007
May 30, 2007
Just a quick entry. . . as of today, I have finished second grade and you can now call me a THIRD GRADER. Wow! I don't do the same things in "school" that other kids do, but I keep on learning and learning. My teacher is very nice, and she sings the alphabet song to me all the time. We sing other songs, too. She helps me color, and I learn about animals and all kinds of things. Ms. Paula will be my summer school teacher, too, so we'll just keep moving forward. I have my very own Individual Education Plan, so it's "all about me," and that's the way I like it! (That's how princesses are, you know.) Anyway, I just wanted to let you know my exciting news. If you haven't read my other updates, go ahead and scroll down for the latest news. I've been so busy lately!
Gotta run! Love to you all!
Gotta run! Love to you all!
Sunday, May 27, 2007
May 27, 2007
The past week has been kind of crazy around my house. Grandma was here a lot taking care of me (and Ian and Thor). Dad was in New Jersey for work from Monday until Thursday. He was able to get an early flight on Thursday, though, so he came home and rocked me in the rocking chair and then went to Ian's baseball game (which they won!). It was a big surprise because he's usually not home until late on Thursday nights. Mom was in Memphis all week for Banking School, and she got home late Friday night. I was already asleep, but we got to snuggle Saturday morning and then again in the afternoon, and then again before I went to bed. (We'll snuggle again today after she finishes her ironing.)
Dad always gives me "catch-up" kisses when he gets back in town, so it takes a while to go through Monday, Tuesday, Wednesday and Thurday kisses. Mom said she was giving me "ketchup, mustard and barbecue sauce" kisses for being gone Sunday through Friday. (Dad didn't think her joke was very funny.)
I went to a "School's Out Carnival" at Ian's school yesterday afternoon for a little while. Mom helped me throw the bean bag, the washers and the little basketball. I was pretty good! I won four stickers that Mom stuck to my arms, and I had my face painted with a bright red lipstick mark (with sparkly red paint in the middle), so it looked like it does when Grandma gives me a big kiss!
Mom and Dad were going to take me to see my first-ever movie at the movie theatre this weekend. I was going to see Shrek III, but it was sold out yesterday, and they decided not to take me to a really crowded theatre, so we're going to wait a while. They don't want my first movie experience to be cram-packed with a bunch of loud kids who might get aggrevated if I have to use my suction machine during the movie. I wish I could taste the popcorn! That's not something that can go through my feeding tube!
Grandma and Grandpa are coming over for dinner tonight. Mom said she's making something very healthy since everybody around here seems to be "watching what they eat." Mom said she gained six pounds at Banking School because they have such great food there! Dad LOST seven pounds last week because he was being so healthy. I guess Mom found what he lost! I'm going to see a dietician in June when I see the GI doctor about my feeding tube button. I wonder if I'll have to gain weight or lose weight or if I'm "just right."
Ian is out of school now, so he's loving life right now. No homework. No tests. No memory to learn. But he only has a week off, and then he goes to the Scholars Academy at MAC. He'll be in "school" for a whole month, but it's supposed to be really, really fun for him. I hope he has a lot of fun!
I hope everyone has a wonderful week. I'll catch up with you again very soon!
Dad always gives me "catch-up" kisses when he gets back in town, so it takes a while to go through Monday, Tuesday, Wednesday and Thurday kisses. Mom said she was giving me "ketchup, mustard and barbecue sauce" kisses for being gone Sunday through Friday. (Dad didn't think her joke was very funny.)
I went to a "School's Out Carnival" at Ian's school yesterday afternoon for a little while. Mom helped me throw the bean bag, the washers and the little basketball. I was pretty good! I won four stickers that Mom stuck to my arms, and I had my face painted with a bright red lipstick mark (with sparkly red paint in the middle), so it looked like it does when Grandma gives me a big kiss!
Mom and Dad were going to take me to see my first-ever movie at the movie theatre this weekend. I was going to see Shrek III, but it was sold out yesterday, and they decided not to take me to a really crowded theatre, so we're going to wait a while. They don't want my first movie experience to be cram-packed with a bunch of loud kids who might get aggrevated if I have to use my suction machine during the movie. I wish I could taste the popcorn! That's not something that can go through my feeding tube!
Grandma and Grandpa are coming over for dinner tonight. Mom said she's making something very healthy since everybody around here seems to be "watching what they eat." Mom said she gained six pounds at Banking School because they have such great food there! Dad LOST seven pounds last week because he was being so healthy. I guess Mom found what he lost! I'm going to see a dietician in June when I see the GI doctor about my feeding tube button. I wonder if I'll have to gain weight or lose weight or if I'm "just right."
Ian is out of school now, so he's loving life right now. No homework. No tests. No memory to learn. But he only has a week off, and then he goes to the Scholars Academy at MAC. He'll be in "school" for a whole month, but it's supposed to be really, really fun for him. I hope he has a lot of fun!
I hope everyone has a wonderful week. I'll catch up with you again very soon!
Saturday, May 19, 2007
May 19, 2007
Today was another beautiful day! It was the first day of baseball season for my brother's team. He's on the Marlins this year in the Desloge City league. Two of his classmates are also on the team. Since it was such a pretty day, I got to go to the game with Mom, Dad, Ian (and his friend Corey), Grandma and Grandpa. Ian played second base and first base. He got two singles and a triple, and he made an awesome play at first base. His team won 12-0. It was very exciting. Mom and Grandma did a good job of keeping my very white arms out of the bright sun, (but Mom also used good sunscreen today), so I didn't get burned. However, I got very, very sleepy. I'm not used to being outside for that long.
I just finished sitting on mom's lap in the rocking chair for an hour. I was practically sound asleep when the nurse arrived. I'm very wiped out today.
Mom leaves at 6:30 in the morning for Memphis. This is her second year of banking school, and she'll be gone until very late Friday night. Her classes start at 1 o'clock Sunday afternoon, then she has class every day from 8 a.m. until 8:30 p.m. She's a little bit stressed about being gone since Dad will be in New Jersey again. But Grandma and Grandpa will be around to make sure everything is running smoothly, so she really shouldn't worry. (Of course, she left a "checklist" for every hour of every day while she's gone so everybody knows where he should be and what he should be doing.) Mom's trying to get into "sponge" mode so she can "absorb" all the new information this year. She said it's all new to her this year because most of it is about "lending products." I'm not sure what that means, but I know she's in marketing, not lending. So I guess she'll learn a few things!
Everybody, please say lots of prayers that Ian, Grandma, Grandpa, all the nurses and I all stay very healthy this week. That will make things go much, much smoother!
Love to you all. I'll catch up with you next week.
I just finished sitting on mom's lap in the rocking chair for an hour. I was practically sound asleep when the nurse arrived. I'm very wiped out today.
Mom leaves at 6:30 in the morning for Memphis. This is her second year of banking school, and she'll be gone until very late Friday night. Her classes start at 1 o'clock Sunday afternoon, then she has class every day from 8 a.m. until 8:30 p.m. She's a little bit stressed about being gone since Dad will be in New Jersey again. But Grandma and Grandpa will be around to make sure everything is running smoothly, so she really shouldn't worry. (Of course, she left a "checklist" for every hour of every day while she's gone so everybody knows where he should be and what he should be doing.) Mom's trying to get into "sponge" mode so she can "absorb" all the new information this year. She said it's all new to her this year because most of it is about "lending products." I'm not sure what that means, but I know she's in marketing, not lending. So I guess she'll learn a few things!
Everybody, please say lots of prayers that Ian, Grandma, Grandpa, all the nurses and I all stay very healthy this week. That will make things go much, much smoother!
Love to you all. I'll catch up with you next week.
Sunday, May 13, 2007
May 13, 2007 (Part Two)
I already wrote something this morning, so you might want to read that one first. But I wanted to tell you what my adventure ended up being today, and I just couldn't wait. It was FUN! It was a beautiful, perfect day today. Blue sky. Not a cloud floating by. Perfect temperature. No humidity. What more could we ask for?
So Mom and Dad packed up my stuff, and Ian and I went to St. Joe State Park with them. We went to the bike trail and walked for about 40 minutes through the beautiful trees. (It's a paved path, so my wheelchair rolled right along very easily.) Ian pushed me for the first half. Dad pushed me the second half. Mom toted my pink backpack the whole way. (This is my "GO BAG." Basically it goes where I go, with all my emergency medical needs.)
After our walk in the great outdoors, we went to the Family Fun Center and went BOWLING! When it was my turn, Ian would hold the ball out to me and let me touch it, then he would throw it down the lane for me. While Ian was walking up to the line to throw the ball, Mom would push me along next to him, so it was like I was really doing it! We used the bumpers for my turn, and I ended up with a score of 91! Pretty good, huh? Actually, Mom ended up kicking our behinds. She got a 144, which she says is one of her very best scores ever, so she was happy. She even beat Dad somehow. Since it was Mother's Day, we thought it turned out just the way it was supposed to.
When we got home, Mom got to hold me in the rocking chair for an hour and a half while Dad cooked one of his world-famous meals. Grandma and Grandpa came over to eat. Mom ate way too much, but she said that was okay. She'd get back on track tomorrow. Then Dad and Ian cleaned up the whole kitchen.
Uncle Bradley just called, so I got to talk to him. He's so funny! He makes me smile. I wish my uncles and aunts lived closer to me, but it's always fun to talk to them on the phone.
Well, I just wanted to let you know what I ended up doing today. Now you can read the first part of today's entry. I'll write more next week sometime. Everyone, have a great week!
So Mom and Dad packed up my stuff, and Ian and I went to St. Joe State Park with them. We went to the bike trail and walked for about 40 minutes through the beautiful trees. (It's a paved path, so my wheelchair rolled right along very easily.) Ian pushed me for the first half. Dad pushed me the second half. Mom toted my pink backpack the whole way. (This is my "GO BAG." Basically it goes where I go, with all my emergency medical needs.)
After our walk in the great outdoors, we went to the Family Fun Center and went BOWLING! When it was my turn, Ian would hold the ball out to me and let me touch it, then he would throw it down the lane for me. While Ian was walking up to the line to throw the ball, Mom would push me along next to him, so it was like I was really doing it! We used the bumpers for my turn, and I ended up with a score of 91! Pretty good, huh? Actually, Mom ended up kicking our behinds. She got a 144, which she says is one of her very best scores ever, so she was happy. She even beat Dad somehow. Since it was Mother's Day, we thought it turned out just the way it was supposed to.
When we got home, Mom got to hold me in the rocking chair for an hour and a half while Dad cooked one of his world-famous meals. Grandma and Grandpa came over to eat. Mom ate way too much, but she said that was okay. She'd get back on track tomorrow. Then Dad and Ian cleaned up the whole kitchen.
Uncle Bradley just called, so I got to talk to him. He's so funny! He makes me smile. I wish my uncles and aunts lived closer to me, but it's always fun to talk to them on the phone.
Well, I just wanted to let you know what I ended up doing today. Now you can read the first part of today's entry. I'll write more next week sometime. Everyone, have a great week!
May 13, 2007
Today is Mother's Day, and I'd like to wish my mom a very happy day! She is, of course, the best mom ever!
Last night, Dad kept me in the family room with him (and Ian) all night so that Mom could have a full night's sleep without any interruptions - in her own bed in her own room! She didn't have to go to the "cave" (the bedroom in the basement). That's what she does when the nurse is here with me.
It was fun having a special sleep-over with Dad and Ian. Dad made a comfortable place for me to sleep at just the right angle, and he pretty much stayed up all night to make sure I was okay. See, he is a VERY heavy sleeper. He doesn't hear anything when he's asleep, so he was afraid that if he fell asleep and I coughed, he wouldn't know about it until my pulse-ox machine started beeping (which means that I'm not getting enough oxygen). He didn't want me to fill up my Thermovent (the little filter that hooks on to my trach tube) with goo, and he wouldn't know about it for a long time. Isn't he a nice dad? He really sacrificed for Mom. He really loves her a lot. It makes me feel so good knowing that Mom and Dad love each other so much, because I know how stressful life can be sometimes. I see it all the time in the faces of people around me.
I've had a pretty good week - I've been able to go outside a lot. It didn't rain as much as the weather man said it would. This afternoon, we are going to do something as a family. I'm not sure what it will be, but it's such a pretty day that I think it HAS to be outside! YEAH!!! My favorite. (Mom says she has to pay the bills first. I guess that's going to take a long time?)
This evening, Dad is going to cook his famous pork tenderloin for Mom and Grandma. Sometimes I really wish I could eat something by mouth so that I could taste what Dad cooks because Mom says he is definitely the best cook in the family, (although Mom has her own signature dishes, too).
I have some exercises to do now - have to stay fit and trim! Actually, I just have to stay stretched out and relaxed because my muscles get so tensed up and stiff, I have to exercise several times a day to stay flexible. It's kind of fun because I just have to lie down and someone does all the work for me - they move my arms and legs, wrists and ankles, shoulders and neck... Mom says she wishes that she could exercise the same way. It would be much easier than walking on the treadmill and doing crunches!
Happy Mother's Day to all you mommies out there! Your kids are so lucky to have you in their lives! Remember to take care of yourselves because you always have to be at 100% (so you can take care of the rest of us)!
Love you!
Last night, Dad kept me in the family room with him (and Ian) all night so that Mom could have a full night's sleep without any interruptions - in her own bed in her own room! She didn't have to go to the "cave" (the bedroom in the basement). That's what she does when the nurse is here with me.
It was fun having a special sleep-over with Dad and Ian. Dad made a comfortable place for me to sleep at just the right angle, and he pretty much stayed up all night to make sure I was okay. See, he is a VERY heavy sleeper. He doesn't hear anything when he's asleep, so he was afraid that if he fell asleep and I coughed, he wouldn't know about it until my pulse-ox machine started beeping (which means that I'm not getting enough oxygen). He didn't want me to fill up my Thermovent (the little filter that hooks on to my trach tube) with goo, and he wouldn't know about it for a long time. Isn't he a nice dad? He really sacrificed for Mom. He really loves her a lot. It makes me feel so good knowing that Mom and Dad love each other so much, because I know how stressful life can be sometimes. I see it all the time in the faces of people around me.
I've had a pretty good week - I've been able to go outside a lot. It didn't rain as much as the weather man said it would. This afternoon, we are going to do something as a family. I'm not sure what it will be, but it's such a pretty day that I think it HAS to be outside! YEAH!!! My favorite. (Mom says she has to pay the bills first. I guess that's going to take a long time?)
This evening, Dad is going to cook his famous pork tenderloin for Mom and Grandma. Sometimes I really wish I could eat something by mouth so that I could taste what Dad cooks because Mom says he is definitely the best cook in the family, (although Mom has her own signature dishes, too).
I have some exercises to do now - have to stay fit and trim! Actually, I just have to stay stretched out and relaxed because my muscles get so tensed up and stiff, I have to exercise several times a day to stay flexible. It's kind of fun because I just have to lie down and someone does all the work for me - they move my arms and legs, wrists and ankles, shoulders and neck... Mom says she wishes that she could exercise the same way. It would be much easier than walking on the treadmill and doing crunches!
Happy Mother's Day to all you mommies out there! Your kids are so lucky to have you in their lives! Remember to take care of yourselves because you always have to be at 100% (so you can take care of the rest of us)!
Love you!
Sunday, May 6, 2007
May 6, 2007
It's been a crazy week around my house. Last night was the big St. Paul Lutheran School auction and dinner. (That's where Ian goes to school.) Mom has been working on this for months now, so she and Dad went last night. They bought a lot of stuff. Mom said she just couldn't see some of the things going for such bargain prices in the silent auction, so she likes to "bid things up." As usual, she ended up "winning the bid" on a lot more than she anticipated. Oh, well. It's "for the kids," she says.
Dad had to stay in New Jersey an extra day this week for a training session, so he didn't get home until Friday. Luckily I was still awake when he walked in, so we got to snuggle, snuggle, snuggle. I love to sit on Dad's lap and just lean back and relax. He rocks me in the chair, and we both get kind of sleepy. Everybody says that when they rock me in the chair, I suck all their energy out. Maybe that's why I keep getting a tiny bit better everyday. Maybe I'm using everyone else's energy!!!
Since I've gotten taller and bigger, Dad is almost the only person who can hold me on his lap with enough room. When Grandma Ross holds me, my feet almost touch the floor, so she can't rock too hard. (She's kind of short, you know.)
Yesterday I got to go outside for a while. It was really hot and humid, but I got to swing for A little while. I really love my swing!
It's Sunday morning, and the nurse is here for a few hours. She's going to do a lot of stretches with me today. I know it's going to be a very busy day, so we're going to get all the "hard work" out of the way. I hope everyone has a wonderful week! Leave me a message and tell me what you are going to do this week. I like to hear about things that are going on out there...
Love to you all!
Dad had to stay in New Jersey an extra day this week for a training session, so he didn't get home until Friday. Luckily I was still awake when he walked in, so we got to snuggle, snuggle, snuggle. I love to sit on Dad's lap and just lean back and relax. He rocks me in the chair, and we both get kind of sleepy. Everybody says that when they rock me in the chair, I suck all their energy out. Maybe that's why I keep getting a tiny bit better everyday. Maybe I'm using everyone else's energy!!!
Since I've gotten taller and bigger, Dad is almost the only person who can hold me on his lap with enough room. When Grandma Ross holds me, my feet almost touch the floor, so she can't rock too hard. (She's kind of short, you know.)
Yesterday I got to go outside for a while. It was really hot and humid, but I got to swing for A little while. I really love my swing!
It's Sunday morning, and the nurse is here for a few hours. She's going to do a lot of stretches with me today. I know it's going to be a very busy day, so we're going to get all the "hard work" out of the way. I hope everyone has a wonderful week! Leave me a message and tell me what you are going to do this week. I like to hear about things that are going on out there...
Love to you all!
Monday, April 30, 2007
April 30, 2007
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!
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!
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