Owen, How can it be? A year and a half since we first met. You have changed my world. I love you, kiddo. More than all the stars in the sky, bigger than the universe. Love, Mom
Saturday, January 26, 2013
Wednesday, January 23, 2013
More Appointments
I wanted to give everyone a quick and brief update on Owen's appointments this week. Saturday I took Owen back to Dr. Brady. His respiratory infection was causing him absolute misery. Late Friday night his ears started draining and I knew it was starting to settle and he needed meds. Dr. Brady is so good about reading my cues, and she prescribed him Amoxicillin. Let me tell you, in less than 24 hours, our little guy was feeling SO much better.
Monday, Owen had 2 return visits at Vanderbilt. His first was with ENT for an ear tube check. The doctor said they were both still in place and she saw no sign of any infection. Strange, considering other doctors said they were not in place. I've come to find that the more doctors we visit, the more opinions we get. Hmm, sometimes MOMMY knows best.
His second appointment was with Pulmonary (lungs/asthma). Dr. Moore said he sounded great, and wants Owen to complete 3 more months of his inhaler and we would go from there.
Tuesday, I took Owen to his feeding therapy evaluation. I do not even know how to explain, except that she watched him eat/not eat. He was grumpy and not cooperative. She said he had "poor muscle tone" when chewing. Have we heard that before? At this point I just nod and go along with what they say. The therapist gives us weekly food assignments and we meet weekly to evaluate his progress. This week we are working on meats and veggies.
Owen meets weekly with 3 different therapists. Here is our schedule:
Tuesday: TEIS-Kids Putnam at 3:45 pm. Owen works on social skills with other children as well as fine motor skills and following directions.
Wednesday: Feeding Therapy- Wee Talk at 4:30 pm. Owen will work on accepting a variety of foods and the amount he takes in.
Thursday: Physical Therapy- Theraplay at 4:15 pm. Owen will meet with the physical therapist to work on building muscle tone, and of course...WALKING!
Our weekly schedules are packed. These 3 therapist meetings, plus countless doctors appointments, not to mention momma gotta work!?! WOW.... THANK GOODNESS for FRIDAYS!
Here is a picture of our little "red-headed" "blue-eyed" boy.
Monday, Owen had 2 return visits at Vanderbilt. His first was with ENT for an ear tube check. The doctor said they were both still in place and she saw no sign of any infection. Strange, considering other doctors said they were not in place. I've come to find that the more doctors we visit, the more opinions we get. Hmm, sometimes MOMMY knows best.
His second appointment was with Pulmonary (lungs/asthma). Dr. Moore said he sounded great, and wants Owen to complete 3 more months of his inhaler and we would go from there.
Tuesday, I took Owen to his feeding therapy evaluation. I do not even know how to explain, except that she watched him eat/not eat. He was grumpy and not cooperative. She said he had "poor muscle tone" when chewing. Have we heard that before? At this point I just nod and go along with what they say. The therapist gives us weekly food assignments and we meet weekly to evaluate his progress. This week we are working on meats and veggies.
Owen meets weekly with 3 different therapists. Here is our schedule:
Tuesday: TEIS-Kids Putnam at 3:45 pm. Owen works on social skills with other children as well as fine motor skills and following directions.
Wednesday: Feeding Therapy- Wee Talk at 4:30 pm. Owen will work on accepting a variety of foods and the amount he takes in.
Thursday: Physical Therapy- Theraplay at 4:15 pm. Owen will meet with the physical therapist to work on building muscle tone, and of course...WALKING!
Our weekly schedules are packed. These 3 therapist meetings, plus countless doctors appointments, not to mention momma gotta work!?! WOW.... THANK GOODNESS for FRIDAYS!
Here is a picture of our little "red-headed" "blue-eyed" boy.
Wednesday, January 16, 2013
Calling All Prayer Warriors
For those of you keeping tabs on our little guy, I wanted to type a quick update. Owen has been under the weather this week. We took him to Vanderbilt ER on Sunday night for a fever of 104. His fever came down and they sent us home, calling it a respiratory infection. He is still very snotty, congested, and coughing. Hopefully it won't stay around too long. We kept him home from school this week as a precaution.
He had is Physical Therapy evaluation yesterday evening. We went to Theraplay here in Cookeville and met with Christine Taylor. She worked with Owen for about an hour. She said he had some "quirks" that were not typical for a kiddo his age. For instance, his fontanelle (soft spots) have closed prematurely. They typically close anywhere from 2-3 years old. This is probably why he has Metopic Synostosis (ridge on his forehead). After doing research, this is can often cause developmental delays. Which as most of you know, we are battling with right now.
He also had what she called "poor muscle tone". However, she said his joints were tight, while most children his age with poor muscle tone are more "floppy". Not really sure what that means. Regardless, she recommended he has PT once a week. He starts next Thursday.
I have yet to talk about Owen's MRI results on the blog. Honestly, I have struggled with what to say. The results came back as showing "delayed myelination". If you are anything like me, you have never heard of that in your entire life.
The definition of delayed myelination is: A wide variety of abnormalities. The causes of delayed myelination include congenital malformations, chromosomal, metabolic and degenerative disorders.
In terms of delayed myelination, this is often a diagnosis seen in babies that are born prematurely. The myelin sheath is a covering that wraps around nerves in the brain. The myelin sheath allows for the signal traveling down the nerve to not decrease in speed. It is similar to the rubber covering electrical wiring. MRIs of the brain can look at specific parts of the brain and assess whether the amount of myelin covering the nerves is a normal amount or if there is a decreased amount of myelin visible. Unfortunately at this time, doctors do not know the long term significance of this finding. Some patients who are found to have delayed myelination eventually go on to develop normal amounts of myelin, while other patients continue to have a diminished supply. At this time, it is
also unclear what types of long term symptoms patients like Owen may or may not develop.
We pray that Owen is one of the patients who go on to develop normal myelin and live a typical life. However, there is no way to know or change the outcome. Only God knows the plans he has for our sweet boy. Doctors have said he is "abnormal", "atypical", "sensitive", "quirky", and just plain "different". I may or may not agree with what they say about my son, but I do know one thing, he is very special. In an out-of-this-world way. He has a calling on his life to do great things. He may not be MVP on the high school football team, or Valedictorian of his graduating class, but he is the center of my universe. I want him to know one thing, no matter what happens in this life, or what diagnosis he gets, I will love him regardless. He will always be the most perfect little baby that I held in my arms for the first time almost a year and a half ago. I am nothing short of BLESSED that I am his mommy. I thank God for him everyday.
So where do we go from here? We have an appointment with Dr. Reimschisel at Vanderbilt in March to work on a "game plan". He is a doctor specializing in child development, biochemical genetics, and neurogenetics. I know he will not have all the answers but hopefully we will have a better understanding. We are so lucky to have such a fabulous children's hospital so close by with specialists for Owen. God has answered so many of our prayers.
What I am asking is for you to continue to pray. We need prayer warriors lifting up Owen's name. Brandon and I have such a strong support system in our wonderful friends and family.Whether you listen to my frustrated, helpless, and occasionally emotional phone calls, offer an encouraging word, or simply pray for this sweet boy, we want to say thank you, thank you thank you! And to those that have never met Owen, and still pray, thank you too. We appreciate it so much. We love you guys.
He had is Physical Therapy evaluation yesterday evening. We went to Theraplay here in Cookeville and met with Christine Taylor. She worked with Owen for about an hour. She said he had some "quirks" that were not typical for a kiddo his age. For instance, his fontanelle (soft spots) have closed prematurely. They typically close anywhere from 2-3 years old. This is probably why he has Metopic Synostosis (ridge on his forehead). After doing research, this is can often cause developmental delays. Which as most of you know, we are battling with right now.
He also had what she called "poor muscle tone". However, she said his joints were tight, while most children his age with poor muscle tone are more "floppy". Not really sure what that means. Regardless, she recommended he has PT once a week. He starts next Thursday.
I have yet to talk about Owen's MRI results on the blog. Honestly, I have struggled with what to say. The results came back as showing "delayed myelination". If you are anything like me, you have never heard of that in your entire life.
The definition of delayed myelination is: A wide variety of abnormalities. The causes of delayed myelination include congenital malformations, chromosomal, metabolic and degenerative disorders.
In terms of delayed myelination, this is often a diagnosis seen in babies that are born prematurely. The myelin sheath is a covering that wraps around nerves in the brain. The myelin sheath allows for the signal traveling down the nerve to not decrease in speed. It is similar to the rubber covering electrical wiring. MRIs of the brain can look at specific parts of the brain and assess whether the amount of myelin covering the nerves is a normal amount or if there is a decreased amount of myelin visible. Unfortunately at this time, doctors do not know the long term significance of this finding. Some patients who are found to have delayed myelination eventually go on to develop normal amounts of myelin, while other patients continue to have a diminished supply. At this time, it is
also unclear what types of long term symptoms patients like Owen may or may not develop.
We pray that Owen is one of the patients who go on to develop normal myelin and live a typical life. However, there is no way to know or change the outcome. Only God knows the plans he has for our sweet boy. Doctors have said he is "abnormal", "atypical", "sensitive", "quirky", and just plain "different". I may or may not agree with what they say about my son, but I do know one thing, he is very special. In an out-of-this-world way. He has a calling on his life to do great things. He may not be MVP on the high school football team, or Valedictorian of his graduating class, but he is the center of my universe. I want him to know one thing, no matter what happens in this life, or what diagnosis he gets, I will love him regardless. He will always be the most perfect little baby that I held in my arms for the first time almost a year and a half ago. I am nothing short of BLESSED that I am his mommy. I thank God for him everyday.
So where do we go from here? We have an appointment with Dr. Reimschisel at Vanderbilt in March to work on a "game plan". He is a doctor specializing in child development, biochemical genetics, and neurogenetics. I know he will not have all the answers but hopefully we will have a better understanding. We are so lucky to have such a fabulous children's hospital so close by with specialists for Owen. God has answered so many of our prayers.
What I am asking is for you to continue to pray. We need prayer warriors lifting up Owen's name. Brandon and I have such a strong support system in our wonderful friends and family.Whether you listen to my frustrated, helpless, and occasionally emotional phone calls, offer an encouraging word, or simply pray for this sweet boy, we want to say thank you, thank you thank you! And to those that have never met Owen, and still pray, thank you too. We appreciate it so much. We love you guys.
Until next time!
Thursday, January 10, 2013
Hey good lookin'!
Hey good lookin'! Whatcha got cookin'?
Owen is doing great. He is such a creature of habit. He is absolutely perfect as long as I stick to his routine. This kiddo has to be in bed by 6/6:30 if I don't want a war to ensue. He eats dinner at 5pm on the dot. If it is earlier or later he won't eat as well. Speaking of eating, he has really developed an appetite lately. He only eats a handful of variety, but he can put some food away! He loves pancakes and sausage for breakfast, a peanut-butter/nutella sandwich for lunch, and chicken fries for dinner. He snacks on animal crackers, puffs, teddy grahams, and goldfish in between. He also LOVES drinking from juice boxes. Mr. Independent. I am not sure what he is tipping the scales at presently, but I know it is over 20 pounds! WooHoo!
(picture complimentary of Aunt Mimi)
Recent events: we celebrated Aunt Beth's 50th birthday on Tuesday. We were attempting to throw a surprise party, but I think we all knew she would find out one way or another. Regardless, we had a good time chowing down on Crawdaddy's food and spending time with each other. We will celebrate Uncle Mike's birthday on Friday! P~A~R~T~Y!!
And for your enjoyment...here is my little monkey playing, jumping, and laughing.
My favorite thing to watch in the ENTIRE world.
Happy Thursday Y'all!
Thursday, January 3, 2013
Happy New Year! .2013.
Happy New Year friends! I have a good feeling 2013 is going to be a good one! We started it off right. We went to the mountains with Grandpa (aka- Pa according to Owen) and Grandma. It was a short and sweet trip, but fun nonetheless. We went to the aquarium for starters. I really thought Owen would be super excited to see the fish. Well, i didn't take into account that they might frighten him. While he didn't cry, he clung on to his daddy like the sharks were going to come through the glass and take him. It was actually pretty cute. Here are some photos to recap the trip under the sea.
This face says it all.
I took this picture on New Years day. Owen woke up in a great mood.
He was sporting his new shades. "2013 is looking bright!"
And lastly, my new year resolution is to grow my hair back out. I made the mistake of having nearly 8 inches cut off. I don't know why I do it, I regret it every time. Maybe one day I'll learn. Here is the before and after. I now look like a 9 year old. Oh well, live and learn???
*Note: my eyes are not pink from crying (even though I felt like it).
I have some weird sinus infection that is making my eyes do crazy things.
Happy 2013!
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