12.31.2010
12.30.2010
On our 10 Year Wedding Anniversary
Once upon a time.....
in a very small town, lived a very young girl named Holly and a very young boy named Eric. It was the summer of 1999. The boy was fresh out of high school and the young girl was awaiting the start of her senior year. The air was hot in June that summer. No different than any other Texas summer really. The boy was dating another girl. The girl was dating another boy. Until the night they met....
That fateful night, they were with their friends as usual. It was a large group getting ready to go to a party. The girl thought the boy was the cutest thing she had ever seen. The boy couldn't keep his eyes off of the girl. A small group left the large party and went to friend's house. Everyone went to sleep except the young boy and young girl. They stayed up all night long talking, laughing and having an amazingly meaningful conversation. The instant friends decided that they must be way more than that. By the end of the next day, they had gently let the other boy & girl down, and were now exclusive.
By the time the two had met, the young boy had already joined the Navy and was leaving for Chicago in just 2 short months. The two were inseparable and dreaded the day that the boy left. When the boy took off for boot camp the girl cried and cried. She missed her friend so much. Throughout the winter the boy and girl wrote letters everyday. The boy's graduation from boot camp was on a very cold winter day. The girl traveled to Chicago, along with the boy's mom and aunt, to see him walk across the stage.
That spring, while the girl was still in high school, the boy proposed marriage during a picnic lunch by a sunny lake. The girl said yes and couldn't stop smiling. The boy quickly left town and headed to Jacksonville, Florida. While everyone called them young and crazy; the boy and the girl planned their wedding day for 9 months.
December 30, 2000, the very young boy and the very young girl were married in a church with all their friends and family watching. The boy skirted into town 3 days before the big day. The girl wore a ridiculously large wedding gown.
Two days later, with everything they owned packed in a trailer, the newlyweds and their parents drove from Texas to Florida. They quickly settled into their new lives together which involved a bunch of great Navy guys, a 600 sq. foot apartment, the beach and one great dog named Hoosier.
Three and a half years later, with a little college under her belt and fresh on the end of his Navy career; the two decided to move back to Texas. So once again they loaded up all of their belongings in a trailer and drove back to Texas to start a new chapter in their lives.
There were small jobs to get them by. There was fire academy, paramedic school and a few different apartments along the way. The boy got his dream job as a fireman at his dream fire department. Even though she couldn't draw a straight line to save her life; the girl got into art school and graduated with her bachelors in December 2006.
By January 2007, the once very young boy and very young girl seemed all grown up and ready to start a family. The first month they tried...they we're pregnant. From that moment on the boy and the girl were parents to the strongest little girl in the world. Through her many struggles, their baby girl helped them lean on each other more, become stronger and more faithful than ever. They were forever changed for the better.
10 years from the day they we're married really does seem far away considering the life that was lived during those years. The boy and the girl hold the details of all those years close. Some highlight moments shine through, others fade into the back of their memory. How life would be different for the boy and the girl if they had alluded fate that hot summer night more than 10 years ago.
That once very young boy and very young girl can only look forward to the 10, 30, even 40 years that are yet to happily come.
in a very small town, lived a very young girl named Holly and a very young boy named Eric. It was the summer of 1999. The boy was fresh out of high school and the young girl was awaiting the start of her senior year. The air was hot in June that summer. No different than any other Texas summer really. The boy was dating another girl. The girl was dating another boy. Until the night they met....
That fateful night, they were with their friends as usual. It was a large group getting ready to go to a party. The girl thought the boy was the cutest thing she had ever seen. The boy couldn't keep his eyes off of the girl. A small group left the large party and went to friend's house. Everyone went to sleep except the young boy and young girl. They stayed up all night long talking, laughing and having an amazingly meaningful conversation. The instant friends decided that they must be way more than that. By the end of the next day, they had gently let the other boy & girl down, and were now exclusive.
By the time the two had met, the young boy had already joined the Navy and was leaving for Chicago in just 2 short months. The two were inseparable and dreaded the day that the boy left. When the boy took off for boot camp the girl cried and cried. She missed her friend so much. Throughout the winter the boy and girl wrote letters everyday. The boy's graduation from boot camp was on a very cold winter day. The girl traveled to Chicago, along with the boy's mom and aunt, to see him walk across the stage.
That spring, while the girl was still in high school, the boy proposed marriage during a picnic lunch by a sunny lake. The girl said yes and couldn't stop smiling. The boy quickly left town and headed to Jacksonville, Florida. While everyone called them young and crazy; the boy and the girl planned their wedding day for 9 months.
December 30, 2000, the very young boy and the very young girl were married in a church with all their friends and family watching. The boy skirted into town 3 days before the big day. The girl wore a ridiculously large wedding gown.
Two days later, with everything they owned packed in a trailer, the newlyweds and their parents drove from Texas to Florida. They quickly settled into their new lives together which involved a bunch of great Navy guys, a 600 sq. foot apartment, the beach and one great dog named Hoosier.
Three and a half years later, with a little college under her belt and fresh on the end of his Navy career; the two decided to move back to Texas. So once again they loaded up all of their belongings in a trailer and drove back to Texas to start a new chapter in their lives.
There were small jobs to get them by. There was fire academy, paramedic school and a few different apartments along the way. The boy got his dream job as a fireman at his dream fire department. Even though she couldn't draw a straight line to save her life; the girl got into art school and graduated with her bachelors in December 2006.
By January 2007, the once very young boy and very young girl seemed all grown up and ready to start a family. The first month they tried...they we're pregnant. From that moment on the boy and the girl were parents to the strongest little girl in the world. Through her many struggles, their baby girl helped them lean on each other more, become stronger and more faithful than ever. They were forever changed for the better.
10 years from the day they we're married really does seem far away considering the life that was lived during those years. The boy and the girl hold the details of all those years close. Some highlight moments shine through, others fade into the back of their memory. How life would be different for the boy and the girl if they had alluded fate that hot summer night more than 10 years ago.
That once very young boy and very young girl can only look forward to the 10, 30, even 40 years that are yet to happily come.
12.25.2010
12.24.2010
Eve
Today is Christmas Eve. Today is my 29th birthday. Today we plan on hanging around the house in our jammies, talking about Christmas, watching everything Christmas we can find and listening to Christmas music all day. It will be a good day.
Christmas this year is more special than last year. Caleigh understands Christmas as well as any 3 year old could. She can tell you on her iPad that the reason that we celebrate Christmas is because of Jesus' Birthday. She can say Merry Christmas and tell you that Santa Claus brings the presents and puts them under the tree and stockings.
Caleigh LOVES for me {yes, me} to sing Jingle Bells to her. Maybe we are making headway in the singing department? She can also request my singing talents on her iPad and does so a lot throughout the day.
We started Caleigh on the bacterial overgrowth antibiotic yesterday. The B.O. isn't that bad but we want to get a handle on it before we end up repeating last winter. She feels fine actually, no fever, but the sleepiness, gas, burping and diapers have increased a lot since we went to the GI doctor a few weeks ago.
Our bathroom remodeling project started on Wednesday. It is truly going to be wonderful when it is all done. I'll do a post with photos and details soon.
Hope everyone has a Merry Eve Day!
~photos from Christmas 2008
Christmas this year is more special than last year. Caleigh understands Christmas as well as any 3 year old could. She can tell you on her iPad that the reason that we celebrate Christmas is because of Jesus' Birthday. She can say Merry Christmas and tell you that Santa Claus brings the presents and puts them under the tree and stockings.
Caleigh LOVES for me {yes, me} to sing Jingle Bells to her. Maybe we are making headway in the singing department? She can also request my singing talents on her iPad and does so a lot throughout the day.
We started Caleigh on the bacterial overgrowth antibiotic yesterday. The B.O. isn't that bad but we want to get a handle on it before we end up repeating last winter. She feels fine actually, no fever, but the sleepiness, gas, burping and diapers have increased a lot since we went to the GI doctor a few weeks ago.
Our bathroom remodeling project started on Wednesday. It is truly going to be wonderful when it is all done. I'll do a post with photos and details soon.
Hope everyone has a Merry Eve Day!
~photos from Christmas 2008
12.20.2010
Eye Doctor
Sometimes Caleigh's eyes are like this:
Sometimes they aren't. Sometimes she looks so completely straight at us that I know it's just a dystonic muscle movement making her sweet brown eyes go haywire.
Caleigh's Dystonia makes her strabismus hard to nail down. Is it the right eye? Is it the left? Both? What percentage of time are they crossed?
Does she need surgery to correct the problem?
This is why we had a follow-up appointment with our eye doctor today.
Caleigh can see well. She has vision. Accurate vision at that.
Keeping her glasses on is a challenge. These glasses are for distance vision so when she is playing on the floor she doesn't want to wear them. I get that. She doesn't bother them when she really needs them.
Today we decided to wait on Caleigh's Artane dose to reach it's max in February. We are scheduled to go up on it again this week as a matter of fact. Again, we wait, but the pressure to do surgery is getting heavier from the eye doctor's point of view.
Her eye measurements are variable every time we go. No set number deviated. Variable.
So we will go for a follow up in February and will probably plan the surgery that we have been putting off for 2 years. Maybe. Until then, we are going to think on it more. We aren't sure it will be beneficial for Caleigh due to her constant muscle movement. If her eyes were permanently crossed the surgery would be a whole different story. What to do...what to do?
Sometimes they aren't. Sometimes she looks so completely straight at us that I know it's just a dystonic muscle movement making her sweet brown eyes go haywire.
Caleigh's Dystonia makes her strabismus hard to nail down. Is it the right eye? Is it the left? Both? What percentage of time are they crossed?
Does she need surgery to correct the problem?
This is why we had a follow-up appointment with our eye doctor today.
Caleigh can see well. She has vision. Accurate vision at that.
Keeping her glasses on is a challenge. These glasses are for distance vision so when she is playing on the floor she doesn't want to wear them. I get that. She doesn't bother them when she really needs them.
Today we decided to wait on Caleigh's Artane dose to reach it's max in February. We are scheduled to go up on it again this week as a matter of fact. Again, we wait, but the pressure to do surgery is getting heavier from the eye doctor's point of view.
Her eye measurements are variable every time we go. No set number deviated. Variable.
So we will go for a follow up in February and will probably plan the surgery that we have been putting off for 2 years. Maybe. Until then, we are going to think on it more. We aren't sure it will be beneficial for Caleigh due to her constant muscle movement. If her eyes were permanently crossed the surgery would be a whole different story. What to do...what to do?
12.18.2010
GI Appt
Thursday we had our regularly scheduled GI appointment. Caleigh is doing so well in this department. Our wonderful nurse said that she thought about us the other day and then checked when we were supposed to come in. I hadn't called her in 3 months. 3 months! It's definitely a record.
We talked about the increase in stools and honestly his guess is as good as ours. Caleigh isn't "acting" sick so it makes the whole guessing game more of a challenge. We are going to increase our probiotics and check back in a week. We may do a round of Xifaxin for bacterial overgrowth if things aren't looking better. One day she may have 1 dirty diaper and the next she will have 6-7. The day of constipation causes stasis which is a breeding ground for bacteria. Artane causes constipation. So I think her guts are having a bit of a pull and tug battle. Even though Caleigh hasn't had bacterial overgrowth since last winter she will be at risk for this for the rest of her life.
We brought a stool sample in and it didn't have any blood in it. This is good news obviously, but it also means that the colitis isn't coming back after we stopped the ulcer medicine about a month ago.
So the feeding plan is to try and get Caleigh's feeds down to 18 hours a day. Right now we are at 20 hours. It would make more of a regular schedule during the day and then continuous feeds at night. This is going to take time. I'm guessing a month or more depending on her reaction.
We talked about food allergies and decided to wait a little bit longer to try foods.
We'll be going for a lot of labs at the beginning of the year. I hate blood work during the holidays so we are going to wait. None of them are urgent. It is a lot of vitamins, trace minerals, metabolic panel, etc. all the short gut standards.
I had pretty much stopped asking about growth charts for the past 2 years. Caleigh was overweight due to many factors, the main one being TPN & Lipids. So I went for it and asked. Caleigh is in the 50th percentile for weight and 5th percentile for height. She weighed 33.6 pounds and was 36 inches long. She's lost about a pound, but I blame the growth spurt and the gait trainer. She's just moving more. Everyone is happy where she is at. Her weight is in a good place.
Our next appointment is in 3 months. Let's hope I don't have to call until then.......
12.16.2010
Chair vs. Toe
Guess who won?
It's not broken. Thank goodness, Lord knows I don't have time for that! It's just really sore. Ouch.
It's not broken. Thank goodness, Lord knows I don't have time for that! It's just really sore. Ouch.
12.15.2010
1 yr Anniversary
One year ago today Eric, Caleigh and I moved into our new home. We sold our old home in 4 days. The entire buying process took 21 days which is an amazing miracle that only God could have saved for us. At the time we knew the house was perfect for us and I can still proudly say that after 1 year we are still fully in love with our choice.
It's amazing to me just how much Caleigh has grown and changed in the past year. She's HUGE now!
When we first moved in I felt like I was renting someone's house. The wallpaper was crazy and the whole house smelled of "old lady." Some of the wallpaper is gone now and the real smell test happened when cousin Avery (who is doing really well FYI) came over for Thanksgiving and didn't mention the "old lady" smell followed by a "yuck!" So I think we are doing good!
There are still boxes to be unpacked. There is a whole room devoted to their storage, but I'm ok with closing the door and not thinking about it. All painting ideas are on hold due to our rambunctious toddler learning how to drive a 300 pound chair. Remodeling will continue, but on a much slower level now. Although, I will say that Caleigh's bathroom remodel is getting very close to starting.
What more can I say...we love our home, the neighborhood, the beautiful trees, the space, the caring neighbors, and the wonderful proximity to the hospital district.
We've made it our own and I couldn't imagine our lives anywhere else.
It's amazing to me just how much Caleigh has grown and changed in the past year. She's HUGE now!
When we first moved in I felt like I was renting someone's house. The wallpaper was crazy and the whole house smelled of "old lady." Some of the wallpaper is gone now and the real smell test happened when cousin Avery (who is doing really well FYI) came over for Thanksgiving and didn't mention the "old lady" smell followed by a "yuck!" So I think we are doing good!
There are still boxes to be unpacked. There is a whole room devoted to their storage, but I'm ok with closing the door and not thinking about it. All painting ideas are on hold due to our rambunctious toddler learning how to drive a 300 pound chair. Remodeling will continue, but on a much slower level now. Although, I will say that Caleigh's bathroom remodel is getting very close to starting.
What more can I say...we love our home, the neighborhood, the beautiful trees, the space, the caring neighbors, and the wonderful proximity to the hospital district.
We've made it our own and I couldn't imagine our lives anywhere else.
12.12.2010
The Joystick
Monday we got a loaner joystick for Caleigh's powerchair. We've been practicing like crazy with it since then. Right now we can still hook up the proximity switches, but we haven't needed to do that. The joystick is so much easier to maneuver for us and for Caleigh. We have forward set up so that when Caleigh pulls back on the joystick it will go forward. Pushing it forward makes it go backwards. This is so forward is a more purposeful movement instead of letting her extension tone move her along. This was my idea so it may or may not work out. Caleigh can also control the speed of the chair by how hard she pulls on the joystick. That is something the switches couldn't do.
We are waiting on the right bracket so that the joystick can be in the perfect location for Caleigh. I'm pretty sure I know where that is now, but we'll see. Even though the stick isn't exactly in the right location, Caleigh is still doing really well. Her pincer grasp is getting really good and she is holding her head up more. All good things.
The concentration frown line Caleigh has in these photos is the general look during our driving sessions. She is so focused on moving the chair. There is definitely determination there.
In other Caleigh news, we didn't actually need to start her ulcer medicine back up last week. Of course, I posted about the excessive diaper situation and the next day she only went once. So we decided not to start it back up. Things have calmed down so maybe Caleigh had a little bug or something. We are always guessing with that tummy.
The ball is now rolling on the intensive physical therapy that we have wanted to do for Caleigh all year. There is now a local clinic doing the specific therapy. We are trying to work out insurance and just the general cost of such a thing. 3 hours a day, 5 days a week for 3 weeks. It adds up quick. I'm working on a bit of an online fundraiser so watch for that soon.
Artane update: It's going well, really really well. Caleigh's movements are more fluid now. We can tell just how intense they are if we are late giving a dose or first thing in the morning. The medicine has really made a difference. We still have a way to go on getting to the full dose. Most children have bad side effects including depression, psychotic outbursts and night terrors. So far Caleigh is happy. Happier on the medicine than off. She's less frustrated with her body at this point.
This coming week we go see the GI doctor. It's been a few months so it should be interesting to see what he says. Other than that there are therapies as usual and Christmas to get ready for.
12.03.2010
Snowman Updates
The month of December is well underway. Today we painted a snowman with shaving cream. Messy, very messy, but fun.
I'm typing this post on my recently revived laptop. The Apple geniuses fixed the logic board and replaced the very cracked and worn case. Apparently, the stars had aligned and I had 130 days left on my warranty. No questions asked. The most exciting outcome from the whole ordeal....they were able to save everything.
We weaned Caleigh off of the ulcer med, Sulfasalazine, about 2 weeks ago. She did well initially, but ever so slowly the dirty diapers have taken over. Today alone she had 7 dirty diapers and went twice in the potty. It's nothing but liquid, and Caleigh's energy has slowed. I'm not a magic stool reader, but I can tell that the blood is back just by the way it smells. Yes, I smell diapers....it's just part of the short bowel mom job. So we'll start the ulcer med back up and see how things go. Until the irritation slows down we will be in the business of diapers galore, tons of laundry, extra baths, and tubs of diaper cream.
Caleigh's powerchair driving is going really well. We usually get a driving session in twice a day. Caleigh lasts about thirty minutes to an hour. Today she ran into the curb, reached up and hit the reverse switch, and then turned right to miss the curb. There are little moments like that that make us really excited about Caleigh's future in her chair. Our DME company is going to bring out a joystick for us to try for a week as well. We should get that on Monday. It was my choice to have them bring a joystick. Even though the switches are working well; there are some issues that we are having. We'll see if it works. Either way Caleigh is doing really well.
12.01.2010
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