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Thomas Jolley - Duane Syndrome, Klippel Feil Syndrome and Beyond

Wednesday, August 5, 2015. Kindergarten Here We Come. Well, here, south of Atlanta school started on Monday. Thomas was so excited to be riding the school bus like his two older brothers. I am not sure he realized that the long day of Kindergarten was going to be in between his bus rides, but he has been happy nonetheless. We love our elementary school! I did not update much this summer as it was busy and fun! He can't wait to do it again next year! Tomorrow is Klippel Feil Awareness Day! Our youngest so...

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Thomas Jolley - Duane Syndrome, Klippel Feil Syndrome and Beyond | thomasjolleyds.blogspot.com Reviews
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Wednesday, August 5, 2015. Kindergarten Here We Come. Well, here, south of Atlanta school started on Monday. Thomas was so excited to be riding the school bus like his two older brothers. I am not sure he realized that the long day of Kindergarten was going to be in between his bus rides, but he has been happy nonetheless. We love our elementary school! I did not update much this summer as it was busy and fun! He can't wait to do it again next year! Tomorrow is Klippel Feil Awareness Day! Our youngest so...
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Thomas Jolley - Duane Syndrome, Klippel Feil Syndrome and Beyond | thomasjolleyds.blogspot.com Reviews

https://thomasjolleyds.blogspot.com

Wednesday, August 5, 2015. Kindergarten Here We Come. Well, here, south of Atlanta school started on Monday. Thomas was so excited to be riding the school bus like his two older brothers. I am not sure he realized that the long day of Kindergarten was going to be in between his bus rides, but he has been happy nonetheless. We love our elementary school! I did not update much this summer as it was busy and fun! He can't wait to do it again next year! Tomorrow is Klippel Feil Awareness Day! Our youngest so...

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Thomas Jolley - Duane Syndrome, Klippel Feil Syndrome and Beyond: July 2015

http://thomasjolleyds.blogspot.com/2015_07_01_archive.html

Thursday, July 16, 2015. Nuerosurgeon Update July 2015. Summer has been so much fun this year with my boys that these appointments sneak up on me. Thomas has been having fun playing with his brothers, outside, in the pool, art camp. Hard to believe in a couple of weeks we will be back at school and Thomas will be in Kindergarten. Phil 4:4 Rejoice in the Lord always! Again, I say Rejoice! Subscribe to: Posts (Atom). Nuerosurgeon Update July 2015. MD Junction Support Groups. Shriners Hospitals for Children.

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Thomas Jolley - Duane Syndrome, Klippel Feil Syndrome and Beyond: Thomas' Story

http://thomasjolleyds.blogspot.com/p/thomas-story.html

We also are working with a sub-specialists geneticists in order to confirm the syndrome of Wildervanck, which is encompasses all of the anomalies. "A syndrome is a group of signs and symptoms that collectively characterize or indicate a particular disease or abnormal condition; the sum of signs associated with any pathological process.". June 9, 2010 6 weeks old. Here is a picture of him with his brothers:. May 27th, 2010 Almost 1 month old. Tanner, Thomas and Tyler. The whole family November 2011. My na...

3

Thomas Jolley - Duane Syndrome, Klippel Feil Syndrome and Beyond: October 2013

http://thomasjolleyds.blogspot.com/2013_10_01_archive.html

Monday, October 21, 2013. Orthopedic Surgeon 6 month Follow Up. Once we got there a great man from radiology came and got us. He weighed and measured him (Thomas weighed 29.2 lbs! And then went to take his blood pressure. Thomas started to freak with the blood pressure and the sweet man said you don't like it we don't do it. Its more important to get the x-rays. The doctor came in with copies of the x-rays and explained that basically his x-rays are boring. He has grown a little in the last six month...

4

Thomas Jolley - Duane Syndrome, Klippel Feil Syndrome and Beyond: August 2014

http://thomasjolleyds.blogspot.com/2014_08_01_archive.html

Friday, August 22, 2014. Spine Care Clinic Appointment Neurosurgeon. Shame on me for putting so much work into this blog and then not updating it since January. Here is the good and the bad on that. The good is that there is nothing to tell medially with Thomas and we haven't had any changes in his condition, we are living and enjoying our lives together! Thomas also talked non-stop, no surprise there. He was telling them how strong he was and that he can even pick up his bike at home. The nurse ...It wa...

5

Thomas Jolley - Duane Syndrome, Klippel Feil Syndrome and Beyond: January 2014

http://thomasjolleyds.blogspot.com/2014_01_01_archive.html

Tuesday, January 21, 2014. Today, we were blessed with a great doctor. She read our file before we came in. AMAZING! She understood our concerns and asked it there was anything in particular that she needed to address. Once we went over his stats, I was ecstatic! I he had grown 8 cm since our last visit 9 months ago! For his age that is above average which means he did what he was suppose too AND is catching up a bit. Thank you Lord! I know I haven't been keeping up with my blog as much and for my reader...

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New Shoes « You Gotta Laugh

https://shellyplus4.wordpress.com/2011/06/28/newshoes

Crying is a whole lot uglier……. June 28, 2011. In the end she found a cute pair of purple Chucks that look great with her butterfly braces. Pray for me next week when we try to find a cute pair of dress shoes. 🙂. This entry was posted in Family. 3 thoughts on “ New Shoes. June 28, 2011 at 2:10 pm. I relate to this very much, Shelly. My son, 14, often feels sad that he will never “blend in” with friends because of his skin color, his hair, or the big eyebrows we have! June 28, 2011 at 2:20 pm. I for one ...

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Medical Update « You Gotta Laugh

https://shellyplus4.wordpress.com/2011/06/28/medical-update

Crying is a whole lot uglier……. June 28, 2011. I am going to be posting Mattie’s updates here and on Caring Bridge. I have had requests for both. Mattie got her orthotics last week. Other than some minor hiccups with the purchase of some new shoes it is going really well. They are only causing some minor irritation and seem to be helping keep her in the proper position. I am not sure how long she will be wearing them. Hopefully we can correct the problem and get her out of them soon. One of those days.

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One of those days « You Gotta Laugh

https://shellyplus4.wordpress.com/2011/07/01/286

Crying is a whole lot uglier……. One of those days. July 1, 2011. July 1, 2011. I have also seen her yell and shake her fists at him. In the end she probably has it right. I am sure that God doesn’t mind us being mad. he is enjoying the conversation. No real aha moment in this post. just venting a bit I guess. This entry was posted in Family. 2 thoughts on “ One of those days. Katie L. said:. July 2, 2011 at 7:45 am. I love you, Shelly. Your strength, patience and intuitive nature have always awed me!

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Klippel Feil Syndrome « You Gotta Laugh

https://shellyplus4.wordpress.com/2009/06/25/klippel-feil-syndrome

Crying is a whole lot uglier……. June 25, 2009. January 27, 2010. Many of you that know us have heard me talk about Mattie’s health a good bit. Those of you that are new to our world will get to hear all about it. It is actually kind of an issue for me. I probably talk about it too much. Part of me just feels the need to educate people about KFS, and a lot of you just get used for therapy.😛. Curvature of the spine),. Please feel free to ask me any questions you have about the syndrome. It is not some...

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Port a cath « You Gotta Laugh

https://shellyplus4.wordpress.com/2012/03/03/port-a-cath

Crying is a whole lot uglier……. March 3, 2012. I have been dragging my feet for a while on this update. So what is a port a cath? A port a cath is small medical appliance that is installed beneath the skin. A catheter connects the port to a vein. Under the skin, the port has a septum through which drugs can be injected and blood samples can be drawn many times, usually with less discomfort for the patient than a more typical “needle stick”. PS We will walking with the UMDF again this year. Keep an ey...

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Mattie Updates « You Gotta Laugh

https://shellyplus4.wordpress.com/2010/11/01/mattie-updates

Crying is a whole lot uglier……. November 1, 2010. November 1, 2010. Just wanted to let you know where Mattie’s updates have moved to. You can find all things Mattie at:. Http:/ www.caringbridge.org/visit/mattielorenzen. I will do my best to get back on here and start posting again soon. This entry was posted in Kids. Leave a Reply Cancel reply. Enter your comment here. Fill in your details below or click an icon to log in:. Address never made public). Notify me of new comments via email.

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You Gotta Laugh

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Crying is a whole lot uglier……. July 28, 2010. July 28, 2010. Mattie Gets A Wish! This entry was posted in Family. July 21, 2010. July 21, 2010. Blast from the past… hard to believe it has been 6 years. This was her “Look at my face” Face.🙂. This entry was posted in Family. Additional Information for the vacation nomination. June 15, 2010. June 15, 2010. I am sending this out to ALL. Feel free to delete, respond, or forward as you see fit. Email me if you would like a daily reminder to vote. The removal...

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Ipad « You Gotta Laugh

https://shellyplus4.wordpress.com/2011/12/03/ipad

Crying is a whole lot uglier……. December 3, 2011. December 3, 2011. I am working on trying to win an Ipad for Mattie. Please help out if you can. If you have a child with special needs (or work with them) and you haven’t yet found A4cwsn. Please check out their FB page. And like them. This is a great group that has already given over 90 iPads to special needs kids/professionals this year. If you like what you see please say I sent you and also friend request Gary James. 8211; it is his page.

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Update « You Gotta Laugh

https://shellyplus4.wordpress.com/2012/02/16/update

Crying is a whole lot uglier……. February 16, 2012. Hello again I haven’t forgotten about you. We started in home nursing care almost a month ago. It is a huge adjustment for all of us! We are still waiting on the results from the hemiplegic migraine and genetic mitochondrial myopathy testing. I will update if and when they come in. This week is feeding tube awareness week. If you have anything you want to know about feeding tubes, please ask! This entry was posted in Uncategorized. Enter your comment here.

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Thomas Jolley - Duane Syndrome, Klippel Feil Syndrome and Beyond

Wednesday, August 5, 2015. Kindergarten Here We Come. Well, here, south of Atlanta school started on Monday. Thomas was so excited to be riding the school bus like his two older brothers. I am not sure he realized that the long day of Kindergarten was going to be in between his bus rides, but he has been happy nonetheless. We love our elementary school! I did not update much this summer as it was busy and fun! He can't wait to do it again next year! Tomorrow is Klippel Feil Awareness Day! Our youngest so...

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