Friday, April 9, 2010
Thursday, April 8, 2010
On the Road Again....
Hey Everyone...
Let's see....where do I start? We went to Charlotte this past Monday to Cranial Technologies and found out some very intresting information about the shape of Parker's head. The very first thing the specialist did was take a series of pics at different angles of Parker,as well as measurements from eye to eye, ear to ear, temple to temple, the width around etc. (I will do my best to get those uploaded so you can see them). And let me just add....Parker loves the camera!!! He just smiled and laughed at them the entire appointment....What a little Ham!!! When the specialist met with us she explained that Parker has Significant Left Plagiocephaly. We were told that Parker would need to wear a DOC band for at least 4 months. At the end of his treament, Parker would then be re-evaluated to see if he would need a second band to achieve optimal results. While at the appointment they did tell us that "no one has a perfectly shaped head" and that we would see a big difference by the end of his treatment. Parker's right eye socket is possibly being affected by the shifting of his skull. As I had mentioned in my last post, Parker's eye has some jumping issues and Cranial Technologies seem to believe that this all can be corrected as his skull returns to a normal position. The pictures that they took of Parker's face showed a marked difference in the "whites" of his eyes. There is more white on the left than the right and the left is more opened than the right. Parker's right ear (if you are looking at him from behind) is significantly higher than the left side...again this will correct itself with the band. Parker's sinus cavities are somewhat smushed together if you will. The specialist showed us a normal skull/sinus cavitiy as opposed to the one with Left Plagiocephaly and you could see a big difference. Parker also has a soft spot that is flat on the back side of his head as well. Our next appointment with them will be to place Parker on a DSI machine! DSI stands for Digital Surface Imaging. This machine will capture a 360 degree image of Parker from the upper chest to the top of his head and will be saved into a computer. The computer will then mold a custom DOC band that will be sent off to their lab and we will be ready for our first fitting and pick up one week later. Now this is the cool part....They will also put a piece of hosiery over Parkers' entire head and make a composite mold of his head and put it on a stick (sort of like what a bank robber would put over his face). I'll make sure I get pics of that! It was very intresting to walk around the corner and see all of these miniature heads on sticks. The reasoning behind this is it will give them a before and after comparison as we go through treatment. We will be required to see them once a week in Charlotte for the first couple of weeks and then after that we will go every other week. At each check up they will take his DOC band and shave parts of the styrofoam lining away to force his head to grow into the new space. Parker has to wear this 23 hours a day and his head has to be washed daily as well as the band. We will also have to clothe him differently because the band is extremely hot. Not to mention we live in SOUTH CAROLINA...and Paker needs to wear this during the hottest months of the year. If you want to see what this looks like then visit their website at http://www.cranialtech.com/. For all of you who know me well....you know that I am already thinking of a really cute design for Parkers' band. So if you see anything that you think would be really cute then e-mail me some of your ideas for Parker's band design. We start our developmental therapy tomorrow morning at 11:00. We have been told that we still do not have a physical therapist and that most clinics that we could take him to have waiting lists for 6-8 months. Please be in prayer that they have an opening for Parker somewhere. We have an opthomalogist appointment in 2 weeks to check on his eyes. The neurologist appointment is in 2 weeks for Parker's EEG to see if he is having any silent seizures and to double check his brain again. Most likely they will do an MRI as well. We are still in need of a Pediatric Orthopedist since he is favoring his left foot and it is turning out when he trys to put any weight on it. I think that just about sums it all up. Our schedule is packed again! Between all of Parkers specialist appointments and Karlyn's softball games twice a week we are more than stretched with our time... but Willis and I wouldn't have it any other way. I hope you all had a wonderful Easter with your families. Parker looked so cute in his Easter outfit and Karlyn looked beautiful on Sunday. Our children are growing up quickly before our eyes. Please keep us in your prayers for we are not out of the woods yet. And thanks again for all of your support. We love you all.
Love In Christ
The Crafts
Let's see....where do I start? We went to Charlotte this past Monday to Cranial Technologies and found out some very intresting information about the shape of Parker's head. The very first thing the specialist did was take a series of pics at different angles of Parker,as well as measurements from eye to eye, ear to ear, temple to temple, the width around etc. (I will do my best to get those uploaded so you can see them). And let me just add....Parker loves the camera!!! He just smiled and laughed at them the entire appointment....What a little Ham!!! When the specialist met with us she explained that Parker has Significant Left Plagiocephaly. We were told that Parker would need to wear a DOC band for at least 4 months. At the end of his treament, Parker would then be re-evaluated to see if he would need a second band to achieve optimal results. While at the appointment they did tell us that "no one has a perfectly shaped head" and that we would see a big difference by the end of his treatment. Parker's right eye socket is possibly being affected by the shifting of his skull. As I had mentioned in my last post, Parker's eye has some jumping issues and Cranial Technologies seem to believe that this all can be corrected as his skull returns to a normal position. The pictures that they took of Parker's face showed a marked difference in the "whites" of his eyes. There is more white on the left than the right and the left is more opened than the right. Parker's right ear (if you are looking at him from behind) is significantly higher than the left side...again this will correct itself with the band. Parker's sinus cavities are somewhat smushed together if you will. The specialist showed us a normal skull/sinus cavitiy as opposed to the one with Left Plagiocephaly and you could see a big difference. Parker also has a soft spot that is flat on the back side of his head as well. Our next appointment with them will be to place Parker on a DSI machine! DSI stands for Digital Surface Imaging. This machine will capture a 360 degree image of Parker from the upper chest to the top of his head and will be saved into a computer. The computer will then mold a custom DOC band that will be sent off to their lab and we will be ready for our first fitting and pick up one week later. Now this is the cool part....They will also put a piece of hosiery over Parkers' entire head and make a composite mold of his head and put it on a stick (sort of like what a bank robber would put over his face). I'll make sure I get pics of that! It was very intresting to walk around the corner and see all of these miniature heads on sticks. The reasoning behind this is it will give them a before and after comparison as we go through treatment. We will be required to see them once a week in Charlotte for the first couple of weeks and then after that we will go every other week. At each check up they will take his DOC band and shave parts of the styrofoam lining away to force his head to grow into the new space. Parker has to wear this 23 hours a day and his head has to be washed daily as well as the band. We will also have to clothe him differently because the band is extremely hot. Not to mention we live in SOUTH CAROLINA...and Paker needs to wear this during the hottest months of the year. If you want to see what this looks like then visit their website at http://www.cranialtech.com/. For all of you who know me well....you know that I am already thinking of a really cute design for Parkers' band. So if you see anything that you think would be really cute then e-mail me some of your ideas for Parker's band design. We start our developmental therapy tomorrow morning at 11:00. We have been told that we still do not have a physical therapist and that most clinics that we could take him to have waiting lists for 6-8 months. Please be in prayer that they have an opening for Parker somewhere. We have an opthomalogist appointment in 2 weeks to check on his eyes. The neurologist appointment is in 2 weeks for Parker's EEG to see if he is having any silent seizures and to double check his brain again. Most likely they will do an MRI as well. We are still in need of a Pediatric Orthopedist since he is favoring his left foot and it is turning out when he trys to put any weight on it. I think that just about sums it all up. Our schedule is packed again! Between all of Parkers specialist appointments and Karlyn's softball games twice a week we are more than stretched with our time... but Willis and I wouldn't have it any other way. I hope you all had a wonderful Easter with your families. Parker looked so cute in his Easter outfit and Karlyn looked beautiful on Sunday. Our children are growing up quickly before our eyes. Please keep us in your prayers for we are not out of the woods yet. And thanks again for all of your support. We love you all.
Love In Christ
The Crafts
Wednesday, March 31, 2010
Sunday, March 28, 2010
New Specialist's for our Little Man!
Hey Everyone...
I know that you are all probably wondering why it has been so long since my last update on Parker....but things have been quite crazy around the Craft household! Parker is finally in the 10th percentile!!! YEAH!!! Talk about breaking the barrier! He went to the pediatrician's office this past Friday for a well check up and he weighs 16 lbs!!!! We were thrilled about this! Willis and I did have some concerns going to his appointment though and unfortunately our concerns were correct! Since Parker had his open heart surgery he of course had some delays in several different areas that we were fully aware of. Parker had to lay on his back so much during his recovery that the back of his head formed another soft spot and flattened! So after Dr. Bonnett fully evaluated Parkers' face and head he has decided to send us to Charlotte Craniology for an evaluation of his skull. The left side of Parker's face is assymetrically off....meaning that the right side of his face is back further than the left. We have scheduled his appointment for Monday April 5th in Charlotte. We have been told that at this appointment they will take measurements of Parker's head and also take some photographs and then let us know at the end of the appointment if he will need to have a helmet for several weeks to reform the shape of his head! We are very thankful that we are addressing this now because the window of opportunity for this is between the ages of six to nine months because the skull is still so pliable. So...if you see us next and find a helmet on Parker's head please know that we didn't have any huge accident! Not to mention, since Karlyn has been in softball, we have been joking that we needed to get him a baseball helmet to wear while we are at the park...and little did we know that he would actually need one for a specific purpose! He is always 3 steps ahead of us! Also.... Parker has a little bit of "eye jumping" issues with his right eye. We will be seeing an opthamologist for this as well. The Neurologist called this week to set up an appointment to see Parker for his eyes and to recheck the dialated posterior right ventricle! The Developmental Therapist will be here on April 9th for Parker's first therapy session! He will be working with Parker in a few areas that he is behind in. They did say that Parker should not be in the program all that long because he seemed to do well on the evaluation last week and he was able to pick up on things rather quickly....which was very encouraging to her! The Developmental Therapist is trying his best to find us a Physical Therapist to help with Parker's core tone skills...sitting up, rolling over, etc....but he did let us know that PT's are so very hard to come by so let's start praying about that now! Let's see....did I leave anything out? OH....Parker turned 7 months old last week and I will be posting some really cute pics of him really soon, so be on the look out for those! I hope all is well with everyone! Thank you so much for your continued support and prayers! We are enjoying every minute with our little man! Even though he is still keeping us on our toes...we wouldn't have it any other way. Please remember us in your prayers since we aren't completely out of the woods just yet with Parker. But God has a BIG plan for him and we are so thankful to be apart of that. It is very clear to us that Parker is determined to see every specialist and let them all know that he is here!
Love In Christ...
The Crafts
I know that you are all probably wondering why it has been so long since my last update on Parker....but things have been quite crazy around the Craft household! Parker is finally in the 10th percentile!!! YEAH!!! Talk about breaking the barrier! He went to the pediatrician's office this past Friday for a well check up and he weighs 16 lbs!!!! We were thrilled about this! Willis and I did have some concerns going to his appointment though and unfortunately our concerns were correct! Since Parker had his open heart surgery he of course had some delays in several different areas that we were fully aware of. Parker had to lay on his back so much during his recovery that the back of his head formed another soft spot and flattened! So after Dr. Bonnett fully evaluated Parkers' face and head he has decided to send us to Charlotte Craniology for an evaluation of his skull. The left side of Parker's face is assymetrically off....meaning that the right side of his face is back further than the left. We have scheduled his appointment for Monday April 5th in Charlotte. We have been told that at this appointment they will take measurements of Parker's head and also take some photographs and then let us know at the end of the appointment if he will need to have a helmet for several weeks to reform the shape of his head! We are very thankful that we are addressing this now because the window of opportunity for this is between the ages of six to nine months because the skull is still so pliable. So...if you see us next and find a helmet on Parker's head please know that we didn't have any huge accident! Not to mention, since Karlyn has been in softball, we have been joking that we needed to get him a baseball helmet to wear while we are at the park...and little did we know that he would actually need one for a specific purpose! He is always 3 steps ahead of us! Also.... Parker has a little bit of "eye jumping" issues with his right eye. We will be seeing an opthamologist for this as well. The Neurologist called this week to set up an appointment to see Parker for his eyes and to recheck the dialated posterior right ventricle! The Developmental Therapist will be here on April 9th for Parker's first therapy session! He will be working with Parker in a few areas that he is behind in. They did say that Parker should not be in the program all that long because he seemed to do well on the evaluation last week and he was able to pick up on things rather quickly....which was very encouraging to her! The Developmental Therapist is trying his best to find us a Physical Therapist to help with Parker's core tone skills...sitting up, rolling over, etc....but he did let us know that PT's are so very hard to come by so let's start praying about that now! Let's see....did I leave anything out? OH....Parker turned 7 months old last week and I will be posting some really cute pics of him really soon, so be on the look out for those! I hope all is well with everyone! Thank you so much for your continued support and prayers! We are enjoying every minute with our little man! Even though he is still keeping us on our toes...we wouldn't have it any other way. Please remember us in your prayers since we aren't completely out of the woods just yet with Parker. But God has a BIG plan for him and we are so thankful to be apart of that. It is very clear to us that Parker is determined to see every specialist and let them all know that he is here!
Love In Christ...
The Crafts
Wednesday, March 17, 2010
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