Hello everyone. My name is Devan Agnes Gounaud. I was born on February 27, 2005. When I was born, my Mommy and Daddy didn’t know that anything was wrong, just that I had my left eye closed for the first day. When my pediatrician first saw me he was not sure why that was, so he called a pediatric ophthalmologist to have a look. That night they found out that I had a Micro-Ophthalmic left eye and there is a very good chance that I wouldn’t see out of that eye. I also had a Colobama on my right eye and my vision in that eye may not be that good either. I had a retinal specialist come see me and he had that same opinion that my sight is questionable. Mommy and Daddy were upset and had to accept the fact that I might not see.
My doctor also had me get a CT scan. WOW! We found out that I had no Corpus Callosum. So I was only four days old and I now had a fifth doctor, a neurologist, who told us that I had several brain abnormalities such as heterotrophia, dilated rear ventricles, and other things. Finally that fifth day came and I was going home. I had had X-Rays, CT Scan, Renal Ultrasound, Echo Cardiogram, and a full MRI. What a week and I was only five days old! None of my doctors really knew what I had so off we went home.
On the eighth day out into the world I was off to see my sixth doctor, a Geneticist who also did not know what was going on with me. She sent me for a genetic screening and it came back normal with none of my markers having any signs of problems. Once again I wonder what I have.
In April we went to see this nice man and his daughter, dad and mom said that they are going to make me a new eye “Wow I didn’t know I needed three”. It is called an Ocular or shell. It is going to go over my little eye to help my face grow evenly, because my little eye won’t grow any more. At the end of April we went to church and had what Mom said was a big event. She said that I was going to be baptized. Nothing that I couldn’t sleep through - I slept straight through it until God Grandma Ruth put this water on my head and woke me up. It was Ok though I went right back to sleep. We had a big party after, and I had a lot of fun.
In May we were off to see a doctor in Pennsylvania to see if they could help me see with my left eye. While at the doctors, they put these drops in my eyes that made my pupils really big. When we were done with the visit and were getting ready to go home, mom noticed that I felt really hot and a little red. Then suddenly I started choking and couldn’t breathe. Dad rushed to get the doctor and there was all kinds of excitement! The paramedics showed up and we went to the hospital. Dad and Mom called it CHOP, whatever that means. Far from home, I was in this big place and there were lots of babies there besides me. The short trip turned into four days with the verdict that I had an ALTE (Apparent Life Threatening Episode).
Well let me tell you, about one week after my Mom and Dad were getting help for me with my vision, we finally found out what it was that I had. I had Aicardi Syndrome (what the heck is that!?). Well let me tell you it is not as cool as it sounds. A few days after that Mom and Dad noticed that I was pausing every once in a while, throwing my arms out to my side like I was startled. So off we went to see the doctor, and he said we needed to go see the neurologist. He told us that it was a type of seizure and wanted to go for an EEG (whatever that is).
Off to the hospital we go, and they glued these wires all over my head, (glued, people!) and a big sock over my head too - I looked like a Smurf! That test showed that I was having partial complex seizures, so the doctor had Mom and Dad start giving me Zonigram 25mg a day and then go up to 50mg a day. Soon after that I started doing some other funny stuff, I started doing sit-ups, little groups of them, well at least it looked like I was trying really hard to do them, grunting and grimacing. Dad and Mom started taping me on video and took it to the doctor. They said that I was having infantile spasms.
Well I started having them all the time now, 15-30 a day, and I was always tired and slept all the time, and I was only 3 months old. At this point in time my neurologist (mom and dad said) “wrote me off.” I am not so sure what that means, but it was probably not good.
Dad and mom found me a new one though right away and she is GREAT!! The first time we met her she said that what I was doing just is unacceptable and off I went to the hospital and on to a new medicine called Sabril - in one night in July I went from being Miss Sleepy to “Hi how are you!” and was just a little chatter box! Dad and Mom were so happy, and four days later I was not having seizures at all. This was good because the machine said that I was having them every twenty seconds, so no wonder I was tired!
Meanwhile, my parents had people coming to see me each week. They were coming to help me learn to do things like roll over and use my body to do things. As time went on I learned to roll over, and I started sitting up. Not too long after I left the hospital my tummy crunches slowly started to come back, and Dad and Mom had to adjust my medicine - this was a crazy process! The doctor said that it will be an “adjust as we go” process.
For the next couple of months, I learned to sit by myself and play. I was only having a couple of spasms a day but nothing really bad. The one thing that I didn’t like to do is sleep through the night. I would just get up out of the blue. Daddy told me one night that I was waking up after I had a spasm in my sleep. It got really hard for Mom and Dad not getting any sleep, but I did my best.
In September, I went back to the hospital to be checked again because Mom and Dad were getting worried about some new stuff that I was doing. The doctor said that what I was doing was not a seizure, but it looked really weird. While I was there Dad and Mom started giving me something new to eat. It was rice cereal and it was weird and mushy and no matter how many times I would stick my tongue out, they would tell me that it was good for me and that I should eat it. It tasted like cold mush! A week later they added fruit to the cereal and it tasted much better, and I loved to eat it then.
The doctor was worried about the way my head was and the back of it getting too flat and pushing my brain to the one side. So off to a new place to meet a nice lady that helped me get a cool looking helmet for my head. They called it a DOC band. Well let me tell you, having a cast made of your head is not all it’s cracked up to be! I yelled and screamed until it was done. Two weeks later I had this helmet and Mommy put all kinds of neat stickers on it and decorated it for the holidays - I mean cool stuff like pumpkins and leaves for fall and snowmen for winter. Every two weeks I went back to see the nice lady to get it adjusted. Now a lot of people didn’t like the way it looked but I looked like one bad ass football player let me tell you!
Now that same month was my first trip to the shore. What people see in it I don’t know because I thought it was too cold! I also got to go see the nice man Randy and his daughter Heather for a new Ocular this month, this one was different though it was not clear like the others this one was colored, blue.
October came and it was time to dress up for Halloween. Mom and Dad had more fun than I did, one costume after another “what am I, a dress up doll?” First I was a cow, which didn’t do much for my figure. Then I was a witch - the cutest one you have ever seen! Then I was a Fire Girl, a real tough chick. Unfortunately, I got my first cold right before Halloween night and could not go trick-or-treating. I was so stuffed up I could not breath through my nose and could not sleep, and you know what happens when I don’t sleep - no one sleeps! I thought that I was going to be sick forever and finally one morning I got up and no more stuffy nose. Yeah! I got to go on my first long trip in November. It was out to Ohio to see friends. Dad and Mom need to get a more comfortable seat for me because man being in that seat for that long makes you stiff and bored, but we made it. I started meat for the first time on Thanksgiving. I ate turkey, and “yuck” those meats taste icky. I was still having problems with my Infantile Spasms, and the doctor said that Dad and Mom should up my medicine to 1150mg per day and I got a little better. But then I went back to being worse again.
December is here and there is this guy that Dad and Mom keep saying is going to be coming over - his name is Santa. “Who the heck is this guy and what is the big deal?” It also got really cold outside and the wind would blow and I would gasp “O my god it is cold!” Mom and Dad have me wrapped up to stay warm. They said that I look so cute. “Yea right, I looked like my stuffed teddy bear, come on guys I can’t move.” My Infantile spasms were still pretty bad so they called the doctor and she said to up my medicine to 1400mg per day. That did the trick, things got better, and Christmas arrived. I didn’t see this guy Santa, but I did have all of these colorful boxes that I got to pull the paper off of, and it was a lot of fun. One of my favorite things was to look at the lights on this big green bush in the living room.
It had been a couple of weeks now and I have not had an infantile spasm, Mom and Dad are so happy that I am learning how to do different things. I guess that it is fun for me and scary for them because they say to each other “is that something new, is she having a seizure?” I can sit and play with things and hold them, and there are these things that are always in front of me - .they are my feet!
January and February went by quickly with not too many seizures. Then I got to get my helmet off, a week before my birthday. It was great to have that thing off even though I looked cute as hell in it.
I think that daddy can tell the rest from here. I hope to meet all of you very soon.
March was a pretty good month for Devan. We went to see the Ped. Ortho. and he said that Devan has Scoliosis of about 19 degrees to the right, had three Hemi-vertebrae T-11 through L-1 and she has a slight curve forward. It was something that we should not be too concerned about right now. Meanwhile we are trying to have Devan use a bottle on her own. What a project that is since she is very strong willed and if she doesn’t want to do it she DOESN’T WANT TO DO IT! (if you know what I mean).
April 2006 was a quiet month and Devan was still not having any seizures. She does love to dance to music and read her books. At the end of April Devan’s PT’s started to get concerned about her curve forward, so we made an appointment with her Ped. Ortho and he said that he would have his partner to see her and then go from there. After the second appointment with the partner, we were advised that we should go see a specialist in the Children’s Hospital of Philadelphia. Now this is not the first time that Devan has been to Philadelphia. But at least this time we are not going there in an ambulance.
So in May we were off to the CHOP to meet with a Dr. Dormans. He is a very nice doctor. He saw Devan and said that the best course of action was for Devan to have surgery. After we picked ourselves up off the floor, we talked some more about it. Dr. Dormans said that it was good that we are here so early before it had time to progress further and that her curve forward was about 53 degrees. So we scheduled the surgery for July 26th 2006. Her pre-op testing would be on June 26th, one month prior.
June kind of went by like a blur. We had decided in June that we were going to have a benefit concert for the AS foundation in August (this was before we learned about her surgery) and we were also getting ready for the Conference in Louisville. The testing went fine - just a long day going from place to place in the hospital for the whole day non stop. Trying to get lunch somewhere in the middle of it all. We actually fed Devan lunch in the middle of an interview with the anesthesiologist, but what are you going to do?
July came and we packed up the car and off we went to Louisville. What a ride! The first part of the trip was to our friend’s house in Ohio. That should have taken about 6 hours. Well almost 9 hours later we were still not in Ohio (construction through PA) but we got there, talk about wanting to kill some one! The next morning we got up and off to Louisville we went and MORE construction “OH MY GOD!!” as Michele would say. Thank god we are from New Jersey. We showed those people some “Jersey” driving, we got there and it was wonderful. It was great to meet everyone and the girls, the hotel was beautiful, and everything was wonderful. After we said our goodbyes we were back on the road and headed for home. The roads were not as bad as when we went out but still it took a long time.
Two days after we got home from the conference we were in the car again and headed for CHOP for Devan’s surgery, a day that I will never forget. If your child has ever gone in the hospital for a surgical procedure you know what I mean. When they wheeled her away our hearts stopped. The surgery took about 4 ½ hours and Dr. Dormans said that it went very well. After Devan was moved to the PICU we were able to go see her. She had tubes and wires everywhere, and she was not happy. It was heart breaking. She hurt so bad and she had to be moved at least every two hours and she got to the point that if you went near her she would scream - the kind of scream that no noise came out and she doesn’t breathe her mouth just opens and then things catch up and there is this ear piercing scream. She was on a continuous morphine IV and extra Rescue dosages every 4-6 hours. Devan was in the hospital for four days and then was released to go home. She was put in a body jacket brace that was to be worn for 23 hours a day. Needless to say the brace didn’t fit right and we were going back to the hospital almost once a week for the entire 8 weeks that I was home with her to have it adjusted. It caused Devan’s incision to get infected because it didn’t let it heal in two spots and we had to put her on antibiotics. After that little issue was fixed things got better. During this time she started doing a lot more things. She started to roll around on the floor to get things. Staying on her belly was not an issue anymore and she loved it. Obviously her back was the reason for her not spending any time on her belly before.
August came and Devan continued to get better with her activities, and soon came the benefit concert. It was a great time and we had a nice size crowd. Devan had a great time and she even got to meet Smokey the Bear. After the concert was over, it was back to learning new things for Devan. She learned to drink from a bottle all by herself, and I mean by herself - if you tried to help her when she was trying she would drop her bottle and just stop. She wanted to do it on her own! As her arm got stronger she could hold bigger bottles and knew when to lift it up higher to get more out. She also started to stand better and we started to help her try to take steps.
In September, we went to see Dr. Dormans and he said that Devan’s incision has healed wonderfully and that we could start weaning her out of the brace. We also went to Wildwood for the Firemen’s Convention and Devan got to go in the pool for a little while during her out of brace time. As fall started to get closer, we went to pick pumpkins.
October came and we were ready for Halloween. Devan had two costumes - a dragon and a chicken. She looked great in both. However, the dragon costume had a tail that did not make sitting very easy, so we went with the chicken. She was adorable! Devan also went in the hospital for her annual EEG and MRI. The doctors said that they didn’t see anything abnormal in her brain patterns, other than what you would find with her brain.
November was another crazy holiday month. Devan started to stand for longer periods of time at the couch and chair. She also started doing a modified army crawl. Devan is now mobile, Yeah!! She has been getting better with her speech, now and then she will say hair, more like haarr but it is great. She has also learned that her left eye has an Ocular and can be taken out (uh-oh). Mommy didn’t think it was very funny but Devan did. Devan tried turkey for Thanksgiving, but she is still having problems eating stringy meats. She is eating pieces of graham crackers and Dole fruit chunks. Every once in a while she chokes on a piece of fruit, we think it’s because Devan does not understand she can’t talk with her mouth full. She is making progress eating different texture foods, and that is encouraging.
December is here again and Santa is on his way. Devan gave us her own little gift, when we were at Grandma and Grandpa Gounaud’s Christmas day “look mom & dad here is my ‘eye’” right after breakfast. Devan was very excited about all her new toys and she went into sensory overload. She didn’t know what to play with first, it was so nice to see her actively playing, laughing and smiling.
Our New Years Eve (2006) was pretty quiet. We had some friends over for dinner and a few games. Devan didn’t stay up to see the ball drop, as a matter of fact, none of us did. We crashed by 11:30 p.m. Oh Well.
2007 is a new year and boy am I glad 2006 is over.
But just before we could get much into January we were hit with some problems. Devan had her legs squished. It was an accident - she got stepped on. Off we went to the doctor and he thought that she might have broken her one leg or femur. Devan had several x-rays taken, and there were no broken bones (thank God!). She did, however, have some deep tissue damage and it took her a few days before she wanted to move her legs. She just laid there and wouldn’t move an inch. It made therapy hard to do and it took some time before Devan started to stand up and do some leg work again. She did however get enrolled with DDD through the state, which made it possible for her to attend different group activities, one of which is music and pizza night at the YMCA. She loves all the music and singing. Next month they are having swimming and we can’t wait for that!
February has arrived and it is almost 2 year since Devan was born and her birthday is coming up fast. We planned on having a circus party for Devan because she just loves the Disney show JoJo’s Circus, so we turned the house into a big top.
March was a pretty quiet month, except for the new news that Devan is going to be a big sister. That’s right! Michele is pregnant and Devan will have a little brother or sister to play and learn with
April is here and so is spring. Devan got an infection in her eye with the Ocular, so the doctor has us taking it out 5 times a day to put medicine under it. Devan did NOT like that at all. After the first day of this she would fight us every inch of the way. Not that I can blame her, she only has it taken out once every few months on a normal basis. A few days later Michele took Devan to the doctor because she had what sounded like some phlegm in her throat for several days. The doctor said that Devan has some fluid in her lungs (Great) so we had to keep a close eye on her and listen to her chest daily for the next week or two and watch for a fever. But April was not filled with all bad news. Devan was approved for Hippotherapy. (Yeah!) Devan will be starting in May on a weekly basis. One catch is that the only time that they had available is 3:00 pm on Wednesdays and Michele and I both work.
May is here and so are the horses, well a pony. Devan rides a pony named Prince, and she LOVES IT. She giggles and laughs the whole time and claps and smiles. Devan loves to play with Prince’s hair. She will play with it and grabs it with her hands. When she is on the pony she rides in different positions - side saddle on each side, front facing, and facing backwards to help work different muscles. When she is backwards Devan loves to lay on Prince’s back and rub her hands on him. It is so nice to see her have so much fun, and we feel that it is helping her a lot.
Another thing that we get to celebrate in May is that Devan has started to learn to eat on her own. Devan has been grabbing her spoon and feeding herself. We still have to scoop her food on the spoon and she is still a little cumbersome, but it is great. She has also been getting better at grabbing pieces of fruit in her fingers and trying to put it in her mouth, but it doesn’t quite make it and she gets very frustrated.
June is here and Devan is getting better at walking. She still can’t do it by herself and still needs a little trunk support. The Hippotherapy is going great. The OT has a new saddle for Devan to use that has handles on it. This way Devan can learn the concept of holding on to stabilize herself and grab on to things if she gets off balance (a concept that she has yet to master). Devan has started to use her right hand to eat with. She needs a little coaxing though to do it, and she has learned to clap and she is a great clapper. On June 18th Devan did her first “High Five.” It was great!
In June we took Devan to Sesame Place. She loved to see Elmo and the other characters and she got to go on a couple of rides. The Flying Fish and the Balloon ride were her favorites. A couple of days later we went to the Turtle Back Zoo, a little zoo a couple of towns away. Devan went on the train ride that they had there and loved it. She screeched and smiled the whole time, except for the tunnel.
At the end of June the fire department had its yearly carnival and Michele brought Devan down. Devan and I went on the carousel. Devan was upset, but for the most part we feel that it was the music and the noise from the ride that made her upset.
10-14-2008
