Not too long ago, Emily expressed interest in knowing how babies are made. I know she is a little old to just now be getting this information, but I was waiting for her cue. I thought when each of her siblings were born, she would start asking questions. This never happened. Instead, she waited until late one night when everyone was getting ready to go to bed. Since I am one to seize opportunities, I told Garrett to listen too. Actually, if you want to know the truth, Mark was putting the kids to bed and when Emily started asking questions, he hollered for me to come--quickly. He says this is my territory. He's probably right. I tend to be better at using correct terms for anatomy and I try to keep things simple, but truthful.
I also happened to mentioned that making babies is something only married people do. I don't really care if they are married or not when they start having sex. However, I would like for them to grow up thinking that is the thing to do.
Emily seemed to take the birds and bees discussion in stride. Garrett, on the other hand, has decided he never wants to get married.
Wednesday, December 15, 2010
Tuesday, November 23, 2010
Geneticist Appointment 11-23-10
I took Emily to a geneticist appointment today. Though I haven't written about it in The Story of Emily yet, some of you may know that Emily has a genetic disorder called Oral-Facial-Digital Syndrome Type 1 (OFD1). When I reach the point in her story when we get the diagnosis, I would like to tell more about OFD1. However, for now, you should know that it is a very rare genetic disorder and that kidney problems are sometimes evident in patients with it.
Emily has been seeing geneticists since she was just a baby. At first, we went every six months, then every year. Her last visit was almost 3 years ago. In that time, we didn't have any new concerns so there was really no need for an appointment until now. Lately, Mark and I have noticed how Emily is very flat-footed and that her ankles turn downward when she is standing. We didn't know if this was connected to her genetic condition or not. When I brought it up at her check-up, Emily's pediatrician (Dr. M) suggested we talk to the geneticist (Dr. E) about it. Dr. M also ordered a back x-ray to check for scoliosis (a problem seen in OFD1 patients sometimes), blood work to check for kidney problems and a renal ultrasound to do the same. We had these tests done about a month ago. Mark and I are also concerned about Emily mouth. She has several clefts in there. None of them are of the pallet, but on her gums. These cause problems with her teeth alignment.
The beginning of the appointment was much like all the others. A genetic counselor and two interns came in to ask lots of questions. I answered everything from questions about Emily's development to our concerns for her. They measured and weighed Emily, then asked us to wait for the doctor. Emily went to play in the playroom and I read a magazine. I was just starting an article on how to prevent the flu when Dr. E came in. I fetched Emily and he did his exam, paying special attention to the clefting Emily has on her gums. He watched Emily stand and walk barefoot and agreed with us that she needs further examination.
After Dr. E was through with his exam, he asked Emily to go back to the playroom (to which she happily agreed) so we could talk privately. Dr. E sat down on his stool and looked me right in the eyes with "that look". Yeah, I knew what that meant--I was about to hear something I wasn't going to like. I steeled my spine waiting for the bad news, but really, it wasn't as bad as I feared. Dr. E informed me that Emily's renal ultrasound was normal up until the last image. On that image it showed that her renal pyramids show up more than they should. The good news is there are no cysts (something every OFD1 parents fears). The bad news is we need to find out why and what this means for her. The other good news is that all her blood work came back normal. The other bad news is Emily has a 5 degree curvature of her spine. That's not a big curve, but better to get it checked out now rather than later.
All in all, I think the appointment went well. We now have referrals to a cleft clinic (for her mouth), a well-known orthopedic hospital (for her spine and feet/ankles), a neuro-development clinic, and probably a nephrologist (for her kidneys). It may seem strange for me to call it a good appointment after getting all those referrals and the bad news about her kidneys. However, the referrals mean our concerns are not being swept under the rug. As for her kidneys.....until we know there is something concrete we need to worry about, we'll try not to. We've been through so much already with Emily that if I worried over every little thing, I would be a total basket case.
As we learn more, I will keep you updated. In the meantime, prayers and good thoughts sent our way are always welcome.
Emily has been seeing geneticists since she was just a baby. At first, we went every six months, then every year. Her last visit was almost 3 years ago. In that time, we didn't have any new concerns so there was really no need for an appointment until now. Lately, Mark and I have noticed how Emily is very flat-footed and that her ankles turn downward when she is standing. We didn't know if this was connected to her genetic condition or not. When I brought it up at her check-up, Emily's pediatrician (Dr. M) suggested we talk to the geneticist (Dr. E) about it. Dr. M also ordered a back x-ray to check for scoliosis (a problem seen in OFD1 patients sometimes), blood work to check for kidney problems and a renal ultrasound to do the same. We had these tests done about a month ago. Mark and I are also concerned about Emily mouth. She has several clefts in there. None of them are of the pallet, but on her gums. These cause problems with her teeth alignment.
The beginning of the appointment was much like all the others. A genetic counselor and two interns came in to ask lots of questions. I answered everything from questions about Emily's development to our concerns for her. They measured and weighed Emily, then asked us to wait for the doctor. Emily went to play in the playroom and I read a magazine. I was just starting an article on how to prevent the flu when Dr. E came in. I fetched Emily and he did his exam, paying special attention to the clefting Emily has on her gums. He watched Emily stand and walk barefoot and agreed with us that she needs further examination.
After Dr. E was through with his exam, he asked Emily to go back to the playroom (to which she happily agreed) so we could talk privately. Dr. E sat down on his stool and looked me right in the eyes with "that look". Yeah, I knew what that meant--I was about to hear something I wasn't going to like. I steeled my spine waiting for the bad news, but really, it wasn't as bad as I feared. Dr. E informed me that Emily's renal ultrasound was normal up until the last image. On that image it showed that her renal pyramids show up more than they should. The good news is there are no cysts (something every OFD1 parents fears). The bad news is we need to find out why and what this means for her. The other good news is that all her blood work came back normal. The other bad news is Emily has a 5 degree curvature of her spine. That's not a big curve, but better to get it checked out now rather than later.
All in all, I think the appointment went well. We now have referrals to a cleft clinic (for her mouth), a well-known orthopedic hospital (for her spine and feet/ankles), a neuro-development clinic, and probably a nephrologist (for her kidneys). It may seem strange for me to call it a good appointment after getting all those referrals and the bad news about her kidneys. However, the referrals mean our concerns are not being swept under the rug. As for her kidneys.....until we know there is something concrete we need to worry about, we'll try not to. We've been through so much already with Emily that if I worried over every little thing, I would be a total basket case.
As we learn more, I will keep you updated. In the meantime, prayers and good thoughts sent our way are always welcome.
Friday, November 12, 2010
Our Newest Family Member
We have a new pet. Her name is Molly and she adopted us. Mark and I had been discussing getting a cat for a long time. I wanted to get one from the shelter and I thought we would wait until after the first of the year. Then one day in mid-September, this cat shows up on our deck. She started following the kids around, wanting to be petted. We've had strays show up before, but she was the first one that was friendly and I didn't feel the need to run her off. We started feeding her and she hung around (like any smart cat would do). Anytime I washed dishes or the kids were at the table, she would perch on the window sills and watch us. Mark and I decided we should keep her.
A month went by and the cat got a name, a vet visit and the privilege to come inside. I have to say she is the easiest pet we have had so far. We've had a dog, guinea pigs, frogs and a slug. All of them are gone now, but Molly is here to stay. The kids fight over who gets to feed her and clean the litter box. I am not delusional in thinking that it will remain this way, but I am enjoying while I can. It's been a month, maybe it will last........ She really is quite fun to play with and love. I've didn't think I was a cat person, but maybe I am.
A month went by and the cat got a name, a vet visit and the privilege to come inside. I have to say she is the easiest pet we have had so far. We've had a dog, guinea pigs, frogs and a slug. All of them are gone now, but Molly is here to stay. The kids fight over who gets to feed her and clean the litter box. I am not delusional in thinking that it will remain this way, but I am enjoying while I can. It's been a month, maybe it will last........ She really is quite fun to play with and love. I've didn't think I was a cat person, but maybe I am.
Here is Molly when she first showed up:

Thursday, November 4, 2010
Garrett is one whole hand!
Garrett turned 5 years old last month! He is such a smart, amazing little guy. Can I still call him little now? I am constantly astonished by his imagination and vocabulary. Garrett loves to tell jokes and make up stories. Most of his stories involve superheros of some kind, saving the Earth. More and more, the superheros are also named Garrett. Mark and I really chose well when we named him. He loves his name!
Monday, November 1, 2010
Halloween 2010
Our super hero duo, Batman and Robin. Gotham will never be the same with these two fighting the bad guys. Payment may be rendered in lollipops.

The first astronaut in our family. Thankfully I was able to capture the moment when she claimed the living room floor for the wonderful U.S.A.

The cutest little witch around. Already conjuring American flags out of thin air, or out of her sister's hand.

Thursday, October 21, 2010
My Grandmother, Ma
"To know Ma, was to love Ma."
These are the words my sister wrote in an extended obituary that was read at the funeral. They reflect the feelings of everyone who knew Ma; she was so easy to love. She was warm and open, caring and honest. She was also unselfish, kind, strong, sweet and funny. She never forgot birthdays or anniversaries. Her door was always open and if you stepped into her house, you would find yourself loved (and fed). Before you left, you would always get a hug and an "I love you".

August 1923-October 2010
Ma was very sick for a long time before she passed. She spent her last few years in a nursing home where she was visited daily by friends and family. Unfortunately, I was not a frequent visitor because I live so far away. Therefore, I didn't get to spend as much time with Ma as I would have liked. As the years went by, I saw the changes in her when, first, she had to use a walker, then, a wheelchair and when she was bedridden. However, most of my memories are of the times when she was an independent woman, living in her own home. These are the memories I would like to share with you. I think it is the way she would want to be remembered as well.
Family was of the utmost importance to Ma. She loved to be surrounded by us. At the beginning of every month, we would gather at her house to celebrate birthdays and anniversaries with homemade cake and ice cream. Ma would hand out birthday cards with some money tucked into them. If you lived out of town, you'd get the card meant for you in the mail. It didn't matter if you were celebrating your 5th or 50th birthday, Ma always recognized you on your day. Thanksgiving and Christmas were also spent at Ma's house. Ma would cook, and cook and cook to feed everyone. Her house would be packed with people, but she wouldn't have it any other way. Under the Christmas tree was always a gift for each person present. She'd even buy extra presents and keep them in a closet just in case there was an unexpected guest. Ma wanted to make sure everyone was included.
Ma's entire hallway is covered with framed photos of family, from about 3 feet off the ground to the ceiling. Just about every inch of space is taken. For the photos that wouldn't fit on the wall, Ma has a stack of photo albums on, under and in her coffee table. Even when I lived at home, I would take a walk down the hall to see the photos and I would spend time going through the albums. You never knew when you would see a new photograph. Every photo tucked into a Christmas card or letter found a place in Ma's home. When Ma moved into the nursing home, photos still arrived in the mail or delivered in person. She had two giant bulletin boards filled with photos. She also had a digital photo frame so she could still be surrounded by her family.
Ma was so much more than my grandmother. She hailed from Arkansas, but she was proud to be a Texan and especially proud to be a resident of her little town. She was the first female on the town council and a charter member of a new church. She helped open the town museum and she started the senior program at the community center. Ma wore blue jeans more than dresses. She had big feet (which I inherited) and was very tall (which I am not). She spoke her mind and was not afraid to let you know if you were out of line. She loved to watch Jeopardy! and Wheel of Fortune. Ma always smelled of Youth Dew, had a tissue up her sleeve and money in her bra. She loved to listen to Gospel music and George Jones. When it was on, she liked to watch Hee Haw. She sang at musicals and rode on floats in parades. Ma never sat on the sidelines and watched life go by. She lived it.
Family was of the utmost importance to Ma. She loved to be surrounded by us. At the beginning of every month, we would gather at her house to celebrate birthdays and anniversaries with homemade cake and ice cream. Ma would hand out birthday cards with some money tucked into them. If you lived out of town, you'd get the card meant for you in the mail. It didn't matter if you were celebrating your 5th or 50th birthday, Ma always recognized you on your day. Thanksgiving and Christmas were also spent at Ma's house. Ma would cook, and cook and cook to feed everyone. Her house would be packed with people, but she wouldn't have it any other way. Under the Christmas tree was always a gift for each person present. She'd even buy extra presents and keep them in a closet just in case there was an unexpected guest. Ma wanted to make sure everyone was included.
Ma's entire hallway is covered with framed photos of family, from about 3 feet off the ground to the ceiling. Just about every inch of space is taken. For the photos that wouldn't fit on the wall, Ma has a stack of photo albums on, under and in her coffee table. Even when I lived at home, I would take a walk down the hall to see the photos and I would spend time going through the albums. You never knew when you would see a new photograph. Every photo tucked into a Christmas card or letter found a place in Ma's home. When Ma moved into the nursing home, photos still arrived in the mail or delivered in person. She had two giant bulletin boards filled with photos. She also had a digital photo frame so she could still be surrounded by her family.
Ma loved to crochet. From the time I was a little girl, I can remember Ma sitting in her chair with skeins of yarn at her feet and crochet needles in her hands. She made blankets, or pillows or pot holders or tissue box covers for everyone. She put so much care and thought into each piece too. One year, my sister and I received pillows from Ma for Christmas. Mine was pink and hers was purple, our favorite colors at the time. Graduations, marriages and births all warranted a blanket. During my senior year, Ma crocheted a beautiful blanket in the school colors. It was raffled off to raise money for Project Graduation.
Some of my favorite memories of Ma revolve around getting her mail. When I turned 16 and got my license, I was like a lot of teenagers--I wanted to drive any chance I could. For years, my mom had been going after work to get our mail and Ma's mail at the post office every day. Using the guise of wanting to save my mom time, I volunteered to take over the errand. I'm sure my mom saw right through me, but I am so glad she let me start getting the mail. If Ma wasn't at home, I would leave her mail on her table. But if she was home, I got to spend some quality one-on-one time with her. She would always tell me to get a coke from the fridge and a snack. I always chose a Little Debbie oatmeal cake. Then, Ma and I would sit at her table and talk or we would sit in the living room while she crocheted and talk. I will always treasure that time spent together.
Ma was so much more than my grandmother. She hailed from Arkansas, but she was proud to be a Texan and especially proud to be a resident of her little town. She was the first female on the town council and a charter member of a new church. She helped open the town museum and she started the senior program at the community center. Ma wore blue jeans more than dresses. She had big feet (which I inherited) and was very tall (which I am not). She spoke her mind and was not afraid to let you know if you were out of line. She loved to watch Jeopardy! and Wheel of Fortune. Ma always smelled of Youth Dew, had a tissue up her sleeve and money in her bra. She loved to listen to Gospel music and George Jones. When it was on, she liked to watch Hee Haw. She sang at musicals and rode on floats in parades. Ma never sat on the sidelines and watched life go by. She lived it.
Ma with me, my mom and her sister.

By coincidence, when I was preparing to write this blog post, I came across our wedding video. As I watched it, I was reminded of something I had forgotten during the bouquet toss. I was standing, bouquet in hand, with all the unmarried ladies behind me. Off to the side, out of the camera's view was Ma. She said something to me about also being unmarried and everyone chuckled. I jokingly told her to come on and get behind me. Laughing, she shook her head "no". The count down began: 3.....2.....1... I leaned over and made a neat underarm toss right to Ma. She could do nothing but catch the bouquet. We had a re-toss, but the first one was the best.


So, I leave you with this song, Go Rest High on That Mountain, written and sung by Vince Gill.
Friday, October 8, 2010
So many things to post about, so little time
Hi All,
I have lots that I want to share, but I simply do not have the time to be as detailed as I would like. I will be going out of town for a few days very soon. When I get back, I promise to update you on the following:
While I am gone, Mark will be holding down the fort. I am positive he will do an excellent job. I hate to leave you all hanging, but I will have much to write about.
I have lots that I want to share, but I simply do not have the time to be as detailed as I would like. I will be going out of town for a few days very soon. When I get back, I promise to update you on the following:
- We are (most likely) getting a new family member.
- Emily and Austin had their annual check-ups.
- My dear, sweet Grandmother passed away.
- Chapter 13 of "The Story of Emily"
While I am gone, Mark will be holding down the fort. I am positive he will do an excellent job. I hate to leave you all hanging, but I will have much to write about.
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