Hi, my name is Julie Anna Greer. I have a diagnoses of dysgenesis of the corpus callosum and a balanced translocation of my Xp; 3q chromosomes. Mommy had a normal pregnancy until the ninth month. Mommy and Daddy wanted to have another sonogram because they wanted to see my sweet face and since insurance would pay for it our doctor let us. The sonogram indicated mild hydrocephalus and intrauterine growth retardation. We were all sent to a perinatologist who performed many blood tests and an amniocentesis to try to figure out what was going on. The blood tests revealed that mommy had been exposed to cytomegalovirus (CMV) and they thought that I might have it. The amniocentesis revealed the balanced translocation. My poor mommy and daddy spent much of the last four weeks reading and worrying about me. They were so scared and relied only on each other for support.
I finally arrived after 36 hours of labor by C-section on January 8, 1997 weighing in at 7lbs 1.7 oz. Mommy and daddy were so glad to see me. My APGAR scores were 8 and 9, I showed no signs of CMV and it was quickly ruled out by blood work. A CT scan at birth and a MRI at 1 week revealed the dysgenesis of the corpus callosum instead of hydrocephalus and blood work confirmed the balanced translocation. I was taken to the NICU while everyone poked and prodded at me and tried their best to find something else wrong with me. Mommy is still not happy about that whole experience and wishes she could do it all over again. She tells me that she would have taken me home much sooner. After 13 days mommy and daddy finally got to take me home to a nice calm place so I could start showing off.
Developmentally I have done a good job at impressing everyone who will give me a look. I am 15 months old now and I average about a 2-3 month delay in some areas but am right on target for others. I have age appropriate skills in social skills, self-help skills, and fine motor skills (I have mastered picking up everything up off of the floor and putting it into my mouth). I will laugh hysterically at just about anything especially daddy; he really knows how to get me going. Did I mention that I have the best Daddy in the world? I also love looking in the mirror at myself and making faces; it has been my favorite thing to do since I was 6 months old. I always get compliments on how good I am, although I am beginning to realize the benefits of temper tantrums.
I feed myself finger foods; Cheerios, cheese, and cookies are my favorites. I am off the bottle and only drink from the cup. I'm working on the spoon, I know what to do with it but it's much funner to fling it around. My gross motor skills are around 11-12 months. I crawl, pull to stand, walk while holding onto mommy and daddy's fingers or my little push toy, and I cruise around the furniture. I have mildly low muscle tone and it is my biggest enemy. My speech is a little delayed. Expressive language is around 11-12 months but receptive language is at 13-14 months. "Ma-ma" is my favorite word but I can say other words when I'm on a roll. I am starting to learn some sign language; my first sign was "more" as in "more cookies." My cognitive skills are around 12-14 months and are catching up fast ever since
I've been able to get into lots of trouble exploring my environment. My favorite games to play and are ones I've become very good at playing all by myself are "peek-a-boo", "patty-cake", "where is thumpkin", and I'm learning how to snap my fingers (I try so hard but I just can't get the sound that Daddy can).
We live in Alexandria, Virginia. My daddy's name is Philip. He works for Virginia Power and likes helping people get their lights back on. He has worked there ever since he graduated from high school eight years ago. My mommy's name is Tracy. After six years of undergraduate and graduate school she has just graduated from Shenandoah University and is now an occupational therapist. She is going to start work at the National Rehabilitation Hospital in Washington, DC on May 18th.
Daddy and mommy tell me everyday that they can't imagine life without me and that I am the love of their lives. I am their "angel baby."
Julie Update #2
Wow, it’s been a long time since I’ve written. I’m now 2 ½ years old. I can’t believe it; time has really flown by. A lot has happened since the last time I wrote.
I started walking when I was 21 months old which has resulted in quite a few bruises. I must say I am a little clumsy. I climb on everything, and I mean everything. Mommy and Daddy are always telling me not to climb on certain things because they’re afraid I’m going to fall, but then they seem so proud of me once I do it. I can’t figure them out.
I drink from a straw sippy cup, although if mommy and daddy would let me I would drink from a regular cup, but they say I make too much of a mess. I personally don’t think so. I feed myself with a fork or spoon (with some difficulty) when I’m allowed but daddy insists on feeding me because he wants me to gain weight. When I was 2 years old I only weighed 20 lb. I was off the charts (whatever that means), but mommy and daddy seemed to worry a lot about it, and ever since then all they give me is milk and make me eat everything on my plate. Well recently I weighed in at a whooping 24 lb. 8 oz., and was back on the charts! Daddy was especially happy about that.
When I was 18 months old I had to get glasses because I started to cross my eyes and Dr. Seidman told me that I was far-sighted (I love that Dr. Seidman, he wears glasses like me). I didn’t mind them at all and I must say I look awful cute in them. Everyone’s always looking at me.
I still don’t talk very much but mommy and daddy are always teaching me new sign language. I know about 30-40 signs. I can definitely get my point across.
I am a very social little girl, and will do anything to get everybody’s attention so I can say “hi” and show off my beautiful smile. “Hi” is definitely my favorite word.
I definitely love getting into mischief. Just today I took daddy’s keys and dropped them in the trash without anybody knowing. Daddy just got back from digging in the dumpster to find them. He stinks!!! He says I’m grounded, although I know he doesn’t mean it. I’ve got daddy wrapped around my little finger. I’m daddy’s little girl.
I start early intervention preschool in a month. Mommy and daddy are always talking about it, I’m not sure if they are going to make it! I try to tell them I’ll be O.K., I can’t wait to make new friends.
Julie Update #3
Hi everyone! I’m 3 years and 3 months old now and I’m good at telling you by holding my fingers up. I’m such a big girl. I started preschool in September and I LOVE it. I especially love riding the big yellow school bus. I blow big kisses to everyone as we drive away. I get mad if mommy or daddy take me to school or pick me up because I don’t want to miss one ride on that big bus! I’m always asking people to sing the wheels on the bus song so I can imitate the wheels going round and round, the babies going “wah-wah-wah,” the driver saying “move on back,” and the people going up and down. I really like trying to jump to that one; I’m just starting to be able to get my feet off of the ground. Mommy just bought me a big play school bus and I’m having lots of fun pretending that I’m driving.
I’m starting to do a little bit more talking, my new words are “elmo,” and “off.” I try to talk a lot more but things seem to come out of my mouth sounding the same. I know what I mean but no one else does. I still continue to learn new signs and perfect the ones that I already know. People are always impressed with how much sign language I know. Sometimes mommy and daddy have to make me use my signs, you know I really don’t know why, I know they know what I’m trying to say! I can put up to 3 signs together to make a sentence but I typically just use one or two and that seems to get my point across. I get speech therapy 2x/week at school and I’m getting ready to start private speech therapy real soon. I also receive OT 1x/week and PT 2x/week. In OT I work a lot on my mouth and tongue moving better because sometimes I have a hard time chewing things all the way. My mouth is a little weak. I’m working on it though. In PT some of the things I’m working a lot on are my balance, being able to go up and down stairs, and walk on uneven surfaces without falling. Oh yea, I’ve just started being pretty good at running (walking fast) for short distances without falling, I really get going, especially if daddy is chasing me. I like playing that game.
Just yesterday (3/25/00) we were blowing bubbles and I took the bubble stick and put it up to my mouth and blew and guess what came out??? BUBBLES!!! Mommy and daddy are so proud, they got so excited I got scared and cried. Another thing that I’ve recently learned to do is put on my jacket and pull my zipper up with my zipper pull! I lay my jacket out upside down and put my hands in and flip it over my head. I need help to start my zipper but once it’s hooked I can pull it up. I can take my jacket off and hang it up all by myself. Oh yea, one more thing that I like to do are my sit-ups. I put my hands behind my head and do little crunches. Everyone gets a good laugh out of that. Daddy says I’m going to have a six-pack real soon. Mommy says it’s good exercise for me. I just think it’s fun.
At home daddy likes to give me a book and say for example “find me the tree” or “find me a ball” and then I open the book and look for it. He gets so excited when I get it right and I usually do. Usually I can get all my colors right but sometimes I don’t and mommy says it’s because I don’t pay attention. Mommy is worried about that but I don’t see what the problem is.
Daddy and I play lots of fun games at home. He pretends like he’s a wrestler and does all kinds of silly tricks, I just lay there and giggle. We play carnival rides and he flips me around pretending like I’m on a Ferris wheel. It’s lots of fun.
On April 19th I have to surgery on my teeth because I have lots of cavities. Nobody knows why, it may be because I have weak enamel. I love to brush my teeth which mommy, daddy, or Gloria (my wonderful baby-sitter) let me do after they’ve brushed. They have to make me go to sleep so I have to go to Children’s Hospital. Everyone is worried but I’ll be O.K. Please pray for mommy and daddy to pull through
Julie Update #4
Hi Everyone. I'm four years old now. I just had my birthday on January 8th, 2001. I am getting to be such a big girl now. I weigh 28 lbs. and I'm 37 inches tall. The doctor says I'm just barely on the charts but I'm just a small little girl. I've definitely started to talk a lot more recently. I do lots of babbling and rambling on. I have a vocabulary of about 30-40 words. I've started to say my name! Mommy and Daddy were so proud of me for that. Mommy and I called Daddy at work and I told him what my name was. It was exciting. I like telling everyone what my name is. I am able to put my words together with my sign language to make a sentence but again sometimes people have to make me do it. I've been working on saying "I want or I want more ___." When daddy and I are playing and he stops for more than 1 second (I'm not that patient) I'm really good at saying "Daddy more" or "more Daddy more." I always get him that way.
I started my second year of special Ed preschool in September and I really love it. I love my teachers, Ms. Amy and Ms. Marta. I also love all my friends in my class. We have lots of fun learning together. I get speech therapy 3x/week, OT 1x/week, and PT 1x/week in school. I also go to private speech therapy 2x/week, and craniosacral therapy 1x/week. Oh yea, last summer I also started hippotherapy!!! I get to ride a horse in all kinds of different positions. I'm good at telling the horse to walk and stop. I did that in the summer and fall. We've been off for the winter but I can't wait to start again in the spring (April 21st to be exact). When I ride the horse I really have to work hard to stay on. Mommy thinks this has helped me be more steady through my trunk and helped me with my balance. All I care about is that I have lots of fun and I get lots of attention when I'm on that horse. I always have a big audience watching me, between my ah-ma, pop-pop, grammy, aunt nu-nu, aunt jo-jo, uncle morgan, uncle jason, aunt tiffany, Hollie, Morgan, Jake, Joey, Missy, and my babysitter Gloria, and Wally. Oh yea and mommy and daddy are always there. I wave, blow kisses, and say "hi" everytime I go by everyone.
When I was 3 ½ years old mommy and daddy started potty training me and within a couple of weeks I was potty trained, for pee-pee and poo-poo. I also was trained through the night at the same time. I tell people I need to go potty by either giving them the "potty" sign or saying "poddy." Mommy and Daddy like bragging about this accomplishment, I think they were surprised at how quickly I did it. I don't see what the big deal is, it's fun to wear my big girl underwear. They're really cool.
Mommy and I might be going to a place in Creston, NC called Miracle Mountain in June or July. It's a neat place that does Hyperbaric Oxygen Treatment and Oxy-sound Harmonics. You go for 22 days for a total of 40 treatments/dives. Mommy and Daddy think it will help with my development. It's very expensive so I hear them talking about doing a fund-raiser to raise some money to help cover the costs. It's not a definite yet but it's something else they are looking into doing with me.
Well that's about all for now. Daddy will be putting up some new pictures of me on the website. I hope you enjoy them.
Julie Update #5
Well it's been another year, which means it's time for me to let you all know how I'm doing. I'm 5 years old now and loving it. I had quite a few birthday parties this year and I had a great time telling everyone "It's my birthday." Now every time I see a present I think it's my birthday and will ask "my birthday?" Mommy tries to tell me it's not all about me but I can see that's just not true. Daddy turned 30 four days after my birthday and we had a surprise party for him. I was around to scream surprise but then I got to leave with Ama, which was even better. Mommy was done in for about a week after all of those parties.
My big accomplishment this year has been that I have been talking a lot. I consistently speak in 3-4 word sentences but just the other day I put an 8-word sentence together "mommy, I want that open, my Polly pocket." I am trying very hard. I'm really working on being able to ask questions. I'm pretty good at asking where questions and have slowly begun to ask why questions but it's been a long haul to get that far. I'm still very sweet and everyone tells me I'm the most polite kid they know. I'm so good at saying thank you, asking please, and saying excuse me, and bless you when someone sneezes. I also make sure that people are polite back and if I say bless you I'll continue to say it louder and louder until they say thank you. I'm demanding that way!
School has gone great this year. I have the best teacher this year, her name is Mrs. Laurie. I love her and I'm always asking mommy if I'm going to see her by saying, "play with Laurie." I have been working hard on writing a J for Julie, which I haven't quite mastered. I like to sing along to the ABC song and I'm beginning to get the concept of counting. I can count to three by myself using my fingers. I get lots of practice with this because mommy and daddy count to three if I'm not listening and they want me to do something. I get right to work at two!
I'm still riding the horse once a week and I just can't get enough even though it wears me out. I ride a horse named Grey, he is 9 years old. We got a puppy in November of last year and soon I'll be able to ride him like a horse. He's a yellow lab and his name is Gus. He's been quite a handful; I hear mommy and daddy saying all the time he's like having another baby. I like lying on top of him and getting licked. I also like to give him treats when he sits and gives me hi-fives. Sometimes I tease him and don't give him the treat but someone always catches me. We have lots of fun together.
I love going on outings with my Ama. She takes me to Target a lot and I always come home with something new. Just the other day Ama, Pops, and me went to a park with a nature center. Pops loved the snakes but I didn't. I liked the turtles the best. I also bought a packet of rocks that I haven't lost yet to the surprise of everyone. I'm also quite obsessed with Jo-Jo and Holly (my aunts). I'm always asking to go see them. Just last weekend we went to see the Baltimore Orioles play a baseball game. I was definitely more into the music and chants than the game. I got a hat and a bat and ate everything in site!
I also love it when Holly or Morgan comes over to play. They are Aunt Missy's kids. She is mommy and daddy's friend. I love them!! Holly is 11 and Morgan is 7 and we have lots of fun together. They are soooo nice to me and they understand me really well. It's sometimes hard to find friends that understand me. I follow them around and do whatever they do. Morgan stayed the night two nights this weekend and I'd wake up nice and early hoping Morgan was ready to play. No one would let me wake her up. I don't know why because that's what I do with Hollie when she stays the night!
I'm a big music fan!!!! My favorite is the Dixie Chicks. I asked Santa for there tapes for Christmas and I can identify any song by just a couple of notes. If daddy is changing the channels on the station and I hear the Dixie Chicks I yell "Daddy, Dixie Chicks" at the top of my lungs. He immediately changes the station back and tells me he didn't know it was them. but I really think he's just sick of hearing them. I don't care though because I love them! Mommy and Daddy said that if they come in concert to where we live that they will take me. I hope they come soon. I also really like J-Lo and Ja-Rule. Daddy taught me to "raise the roof" while dancing to their songs.
Mommy just got back from a conference where she was trained on how to use one of the Sound Stimulation programs called The Listening Program. I'm going to be doing that soon and I'm excited about listening to music through headphones, which I love to do. Mommy's hoping I'm going to cooperate.
Well I think that's all for now! I'll talk to you all soon.