Wednesday, December 23, 2009
We Couldn't Wait!
My parents and I were watching Ethan run around in their backyard yesterday, and were commenting on how he looks like he is filling out already. We went ahead and unwrapped the scale he was getting for Christmas. He has gained 8 pounds in the 23 days since his surgery!!!! Woo Hoo!!!!!
Friday, December 18, 2009
What a Difference a Little Time Makes!
Ethan is doing so great since his surgery! The site is no longer sore, so he doesn't mind the tube feedings at all. He just relaxes in his bean bag and watches cartoons while we feed. We can already see a difference in his mood and energy level! We are so glad we finally decided to have the tube placed. We avoided it and avoided it until he was sick this fall with a simple cold and wouldn't eat for three days. He was so lethargic and gaunt after that until he was able to keep food down again. We knew it was time. When Ethan gets sick with a simple head cold, it can be very bad for him. He can't clear the congestion and when he eats or drinks, he starts coughing, then gagging, then everything comes back up.
Ethan's last cold was I think in October, and that is when we began the proccess of doctor's appointments to place the g-button. We were very lucky he wasn't sick during the process and especially at surgery time! He woke up this morning very congested, coughing, and gagging. We feel so much better knowing we can now keep him nourished solely through the tube until he can eat by mouth and keep food down again!! No more going three days without keeping anything down for our sweet angel! No more worrying about dehydration and having to go to Children's Hospital ER to see about IV fluids! Hopefully with us being able to feed him with the tube when he is sick, he will get better quicker since he will be stronger.
We haven't weighed him yet to see what he has gained so far, but we he will be getting a scale from his Nana for Christmas. I can't wait to see what he weighs!
Ethan's last cold was I think in October, and that is when we began the proccess of doctor's appointments to place the g-button. We were very lucky he wasn't sick during the process and especially at surgery time! He woke up this morning very congested, coughing, and gagging. We feel so much better knowing we can now keep him nourished solely through the tube until he can eat by mouth and keep food down again!! No more going three days without keeping anything down for our sweet angel! No more worrying about dehydration and having to go to Children's Hospital ER to see about IV fluids! Hopefully with us being able to feed him with the tube when he is sick, he will get better quicker since he will be stronger.
We haven't weighed him yet to see what he has gained so far, but we he will be getting a scale from his Nana for Christmas. I can't wait to see what he weighs!
Thursday, December 10, 2009
Ethan's Hospital Stay
Just a few pictures I took while we were at the hospital having Ethan's G-Button Surgery.
Monday, November 30, 2009
Surgery Over!!
Ethan had his surgery today to place his feeding tube. He did great! He was in some pain at first, but hasn't had any pain meds in almost 10 hours now. He is being such a little trooper!! We will be at the hospital for 2 days so we can "test drive" the tube tomorrow and get a feeding schedule worked out with a nutritionist. I am going to try to figure out how to upload pics from my phone. If I can't figure it out, I will post them when we get home Wednesday.
Thanks so much for all the well wishes and prayers! The Lord has had His hand upon Ethan throughout this whole process. Praise Jesus!
Sent from my iPhone
Thanks so much for all the well wishes and prayers! The Lord has had His hand upon Ethan throughout this whole process. Praise Jesus!
Sent from my iPhone
Thursday, November 19, 2009
Ethan's Difficult Stages
Ethan often goes through stages of behaviors. He went through a stage of constantly pushing the buttons on the front of the televison. He has gone through a stage of slamming doors.
Right now he is doing a lot of biting, scratching, and grabbing and pulling hair. He has come up behind me on the sofa several times lately and grabbed two handfulls of my hair without me even seeing him coming. It is very painful, and it is extremely hard to get him to let go. One of the hardest parts of this stage is when he grabs his little brother's hair.
Noah is only 3 and doesn't understand Ethan at all. He has told me that he doesn't like Ethan because he doesn't talk to him or play with him. How do you explain autism to a three year old????
Right now he is doing a lot of biting, scratching, and grabbing and pulling hair. He has come up behind me on the sofa several times lately and grabbed two handfulls of my hair without me even seeing him coming. It is very painful, and it is extremely hard to get him to let go. One of the hardest parts of this stage is when he grabs his little brother's hair.
Noah is only 3 and doesn't understand Ethan at all. He has told me that he doesn't like Ethan because he doesn't talk to him or play with him. How do you explain autism to a three year old????
Background Info on Ethan
I want to share some background on my sweet Ethan to start off this blog.
Ethan was born June 25, 2002. Labor was induced at 38 weeks because of my chronic high blood pressure. My blood pressure was well controlled during pregnancy, but because of my chronic hypertension, my pregnancy was considered high risk and my OB wanted to monitor him closely during labor and delivery. My first son, Christian was born by induced labor and he was very healthy and reached all his milestones on time or early.
Ethan was born without any major complications. His heart rate did drop some during contractions, so the doctor infused the uterus with fluid since they had already broken my water. This was in case he was laying on his cord and constricting it during contractions. Christian's heart rate also dropped many times during labor with no ill effects.
Ethan was a sweet little baby. We had some problems with gas that were solved with changing him to lactose free formula. He slept well at night, but did not nap well. I was very lucky if he took a 45 minute nap.
The first problem we noticed is that he wasn't sitting up when he should. He was 6 months, then 7 months, and still not sitting up on his own. We talked to his pediatrician, and she said all babies develop differently, so not to worry just yet. Then he was 8 months, 9 months, 10 months, and still not sitting up. We got him into the Early Intervention system here in Alabama, and he started receiving physical and occupational therapy at no cost to us. Still no luck with sitting up. Then the next thing we noticed is that he wasn't babbling or attempting any form of speech. When he turned one, he started receiving speech therapy through Early Intervention. We worried because of the speech delay, that he might be showing signs of Autism. His pediatrician at the time said he had too good eye contact and social interaction with us to have autism. So, we continue physical, occupational, and speech therapy and wait. We took him to a pediatric neurologist, and he said the same thing. He ordered an MRI of his brain and the results were normal.
He progressed slowly but surely with therapy, but still did not sit up on his own until 18 months, he started crawling at age 2, and took his first steps just a few days after his third birthday. He still wasn't speaking any words, but he would make mostly vowel sounds. We found out about a wonderful therapy place here in Birmingham that he started attending 2 days a week for 2 hours in addition to his early intervention therapy. His physical therapist there felt very stronly that Ethan had autism. She referred us to a psychologist that specializes in autism. He indeed diagnosed him with autism on my husband's birthday. Needless to say, not the best birthday news. My husband really struggled with denial about the diagnosis, but since has come to accept it and he is absolutely wonderful with him!
One other thing I should mention, is that he had extreme sensory issues. He wouldn't touch many things, and wouldn't eat any food with any size lumps in it. His food had to be stage 2 baby food with NO lumps. He would gag on any type of texture.
When he aged out of Early Intervention at age 3, he was eligible for services in our public school system. In our small city, the schools had just broken off from the county system and started it's own city school system. It had been planned for for many years, and is a really great school system. He started preschool there and made slow but sure progress.
He still will not eat food with much texture. He eats many types of food as long as it is pureed. He will not chew. He has had an occupational therapist working on this for several years now. He has been to feeding clinics too.
Just days after our third son Noah was born, one of his teachers called me and said she thought Ethan was having seizures. He would close his eyes like he was sleepy, and you would see his mouth doing a chewing motion. They would last anywhere from a few seconds to about 15 or 20 seconds. I had noticed this, but thought he was just sleepy. It seemed to happen most often when I was feeding him. We contacted his neurologist, and they scheduled him for a sleep EEG just 6 days after the birth of Noah. My mom kept my older son and the new baby for my husband and I to take Ethan for an all day sleep EEG. It did indeed show a LOT of seizure activity. He was placed on meds, and with occasional tweaks of the meds when needed, his seizures are well controlled.
He is now 7 years old and has not spoken to us. We hear new sounds all the time both vowel and consonant, but no meaningful words. We use picture symbols and sign language with him. He understand many signs, but will only sign two things on his own. (More and Bath - his favorite place to be!)
Because of his eating issues, he is very small for his age. He is in the 4th percentile for height and weight, and looks more like a 5 year old than a 7 year old. We made the decision with help from his pediatrician to have a G-Button (feeding tube) placed for supplemental feedings. When Ethan gets sick with even a simple cold, it can become serious very quickly. When he had head congestion, he cannot clear it himself. When he eats or drinks, he starts coughing to the point of gagging and throwing up. There have been several occasions that when he is sick that he can't keep anything down for several days. During these times, we will be able to feed him with the tube.
Well, I believe that is a very short summary of Ethan's life so far.
Ethan was born June 25, 2002. Labor was induced at 38 weeks because of my chronic high blood pressure. My blood pressure was well controlled during pregnancy, but because of my chronic hypertension, my pregnancy was considered high risk and my OB wanted to monitor him closely during labor and delivery. My first son, Christian was born by induced labor and he was very healthy and reached all his milestones on time or early.
Ethan was born without any major complications. His heart rate did drop some during contractions, so the doctor infused the uterus with fluid since they had already broken my water. This was in case he was laying on his cord and constricting it during contractions. Christian's heart rate also dropped many times during labor with no ill effects.
Ethan was a sweet little baby. We had some problems with gas that were solved with changing him to lactose free formula. He slept well at night, but did not nap well. I was very lucky if he took a 45 minute nap.
The first problem we noticed is that he wasn't sitting up when he should. He was 6 months, then 7 months, and still not sitting up on his own. We talked to his pediatrician, and she said all babies develop differently, so not to worry just yet. Then he was 8 months, 9 months, 10 months, and still not sitting up. We got him into the Early Intervention system here in Alabama, and he started receiving physical and occupational therapy at no cost to us. Still no luck with sitting up. Then the next thing we noticed is that he wasn't babbling or attempting any form of speech. When he turned one, he started receiving speech therapy through Early Intervention. We worried because of the speech delay, that he might be showing signs of Autism. His pediatrician at the time said he had too good eye contact and social interaction with us to have autism. So, we continue physical, occupational, and speech therapy and wait. We took him to a pediatric neurologist, and he said the same thing. He ordered an MRI of his brain and the results were normal.
He progressed slowly but surely with therapy, but still did not sit up on his own until 18 months, he started crawling at age 2, and took his first steps just a few days after his third birthday. He still wasn't speaking any words, but he would make mostly vowel sounds. We found out about a wonderful therapy place here in Birmingham that he started attending 2 days a week for 2 hours in addition to his early intervention therapy. His physical therapist there felt very stronly that Ethan had autism. She referred us to a psychologist that specializes in autism. He indeed diagnosed him with autism on my husband's birthday. Needless to say, not the best birthday news. My husband really struggled with denial about the diagnosis, but since has come to accept it and he is absolutely wonderful with him!
One other thing I should mention, is that he had extreme sensory issues. He wouldn't touch many things, and wouldn't eat any food with any size lumps in it. His food had to be stage 2 baby food with NO lumps. He would gag on any type of texture.
When he aged out of Early Intervention at age 3, he was eligible for services in our public school system. In our small city, the schools had just broken off from the county system and started it's own city school system. It had been planned for for many years, and is a really great school system. He started preschool there and made slow but sure progress.
He still will not eat food with much texture. He eats many types of food as long as it is pureed. He will not chew. He has had an occupational therapist working on this for several years now. He has been to feeding clinics too.
Just days after our third son Noah was born, one of his teachers called me and said she thought Ethan was having seizures. He would close his eyes like he was sleepy, and you would see his mouth doing a chewing motion. They would last anywhere from a few seconds to about 15 or 20 seconds. I had noticed this, but thought he was just sleepy. It seemed to happen most often when I was feeding him. We contacted his neurologist, and they scheduled him for a sleep EEG just 6 days after the birth of Noah. My mom kept my older son and the new baby for my husband and I to take Ethan for an all day sleep EEG. It did indeed show a LOT of seizure activity. He was placed on meds, and with occasional tweaks of the meds when needed, his seizures are well controlled.
He is now 7 years old and has not spoken to us. We hear new sounds all the time both vowel and consonant, but no meaningful words. We use picture symbols and sign language with him. He understand many signs, but will only sign two things on his own. (More and Bath - his favorite place to be!)
Because of his eating issues, he is very small for his age. He is in the 4th percentile for height and weight, and looks more like a 5 year old than a 7 year old. We made the decision with help from his pediatrician to have a G-Button (feeding tube) placed for supplemental feedings. When Ethan gets sick with even a simple cold, it can become serious very quickly. When he had head congestion, he cannot clear it himself. When he eats or drinks, he starts coughing to the point of gagging and throwing up. There have been several occasions that when he is sick that he can't keep anything down for several days. During these times, we will be able to feed him with the tube.
Well, I believe that is a very short summary of Ethan's life so far.
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