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A Family Journal of Hurler Syndrome
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A Family Journal of Hurler Syndrome
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saving grace: July 2014
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A Family Journal of Hurler Syndrome. Thursday, July 17, 2014. Entering the 4th hour of our Neuropsychology appointment. And I'm going to try to give you a quick update. Tuesday was a good day for us. We only had 1 appointment- orthopaedics with Dr. Walker at 2pm- so we spent the morning hours at the Minnesota Childrens Museum. This is one of our favorite activities when we visit Minnesota! Needless to say, we all had so much fun that we lost track of time and were almost late for our appointment! At the ...
saving grace: A quick summary of the last few appointments..
http://graciewhite.blogspot.com/2013/08/a-quick-summary-of-last-few-appointments.html
A Family Journal of Hurler Syndrome. Sunday, August 4, 2013. A quick summary of the last few appointments. Here is Gracie getting her MRI done on Monday like a rockstar! We're so proud of her. There was a concern last year the she may be entering early puberty (God help us all! And although the tests are not back yet for this weeks visit, the doc feels that this is not the case. I certainly pray that it isn't. We will be anxiously awaiting those results for sure! Friday's MRI was a total bust! Twin Citie...
saving grace: 2014 check ups!
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A Family Journal of Hurler Syndrome. Monday, July 14, 2014. Ok, Gracie fans- we are back in Minneapolis for Gracie's 6 year post-transplant check ups once again! We'll update again when we can. Thanks for reading! Location: Downtown East Minneapolis. Sending prayers for great grades on all tests. Our Gracie is a trouper. Shes got this. Love you very much sweetie. July 14, 2014 at 9:12 PM. July 16, 2014 at 7:57 PM. Subscribe to: Post Comments (Atom). A Little Less Scientific If You Please. Back at the RMH.
saving grace: October 2009
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A Family Journal of Hurler Syndrome. Wednesday, October 21, 2009. Sorry for the delay in updating. But Gracie's surgery went well. She ended up needing both the right and left sides done (there was a hernia in the other side, it just wasn't bulging out yet) so we have 2 little boo boos that we're watching heal. Other than that, Gracie is her normal self again, running around like nothing ever happened. Thanks so much for the prayers. Labels: Home Sweet Home. Saturday, October 17, 2009. Subscribe to: Post...
saving grace: August 2009
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A Family Journal of Hurler Syndrome. Thursday, August 6, 2009. All has been quiet on the Gracie front. I'll keep you all updated on how things go, however, I ask you all to keep Gracie in your prayers. Pray that this hernia remains as it is, and does not become entrapped or dangerous. And in return, I will finally make good on a long overdue promise. PICTURES! Labels: Home Sweet Home. Subscribe to: Posts (Atom). A Little Less Scientific If You Please. Administration and The Process. Back at the RMH.
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Jencks Family: Cherished Memories
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Thursday, February 17, 2011. Jeff, Julie, Alexys and Wyatt. Subscribe to: Post Comments (Atom). A new year has started; a fresh start to savings and living on a very tight budget. Our goal as a family is to save as much as possible and still maintain the quality of life we are used too. We love to hunt, fish, camp as a family and most of our weekends are scheduled around the weather. Jeff, Julie, Alexys and Wyatt. View my complete profile. Never in a million sleeps. What is a memory.
Jencks Family: August 2008
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Wednesday, August 27, 2008. So it's been a while. So it's been a while, lets see if I can catch this thing up. First and foremost Lexy has hit the 30 lbs mark on the scale. She is growing like a weed. Her first dance rectial is in just a week. I can't believe my baby is growing up so fast. With God nothing shall be impossible" Luke 1:37. Love to all, remember us in your prayers! Jeff, Julie, Alexys and Wyatt. Subscribe to: Posts (Atom). Jeff, Julie, Alexys and Wyatt. View my complete profile.
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Josiah's Journey: April 2015
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For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11. Sunday, April 26, 2015. Just wanted to update and thank everyone for their prayers! We were discharged on Sat night and were able to come HOME! Josiah was so excited that he was waving and saying thank you all the way out of the hospital :). Yes, indeed we are very blessed! Links to this post. Saturday, April 25, 2015. Thank you all for your prayers!
Epilepticus Rex: What do you know about SUDEP?
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WHAT MY DOCTOR DIDN'T TELL ME ABOUT CHILDHOOD OCCIPITAL EPILEPSY. Saturday, November 27, 2010. What do you know about SUDEP? What I was told about SUDEP was that I should really try not to worry about it. The terms in which they discussed it with me were "Now I know you're going to read about all kinds of scary things online, and I want you to try not to be too worried. They are extremely rare.". In fact, yes, I did read all kinds of scary things, mostly things under the heading "SUDEP". This doctor answ...
Epilepticus Rex: December 2010
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WHAT MY DOCTOR DIDN'T TELL ME ABOUT CHILDHOOD OCCIPITAL EPILEPSY. Monday, December 27, 2010. Safety and Stigma: my doctor's frustrating advice about school. My doctor told me that I should tell "only people who need to know" about Van's epilepsy. The reason he gave for this is that "a lot of people just don't understand" - the message being that we don't want to stigmatize him. We don't want people to "be afraid of him.". So who needs to know? The babysitter knows, but what about play dates? My dad told ...
thejourneyofjosiah.blogspot.com
Josiah's Journey: February 2012
http://thejourneyofjosiah.blogspot.com/2012_02_01_archive.html
For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future. Jeremiah 29:11. Wednesday, February 29, 2012. Please continue to pray for our dear Josiah. Transferred to a very nice room on level 7 (they weren't sure if had been cleaned or not. I know God is in control :) where both Jim and I could be with Josiah all night. Unfortunately after this. Links to this post. Tuesday, February 28, 2012. Josiah update as of 3:45pm. Throat t...
Torie's Story: May 2013
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Wednesday, May 15, 2013. T 1196 MPS Day and Other Stuff. 3 years ago today Torie was T 100. Yes, I really do still keep track. I think I probably always will. Our lives centered around these numbers for so long. We don't count meds anymore (there are none! Oh, this poor neglected blog! Gone are the days that sleep was out of the question until I updated! I guess that's a good thing. But for you loyal followers, never doubt that you are so appreciated! On to the medical stuff.Torie did the treadmill!
Torie's Story: March 2012
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Thursday, March 22, 2012. T 777 Torie's 5! Happy Birthday to Torie! She got a Jessie doll from her Mommy and Ryker, and it was by far her favorite present. She loves "Yessie." She couldn't get it out of the box fast enough! Thanks as always for checking in. I sometimes feel bad that I don't get this updated more often. But more frequent updates generally means things aren't going so great. So I don't feel that bad! Thursday, March 1, 2012. I already have a post for March! When we got back, we went to mee...
Torie's Story: August 2011
http://toriebrady.blogspot.com/2011_08_01_archive.html
Tuesday, August 9, 2011. T 551 Baby Brother! Ryker Quinn is here! He was born at 8:31AM, and weighed 7 pounds, 5 ounces. He looks about as happy to see his big sister as mine always does. Torie thinks being a big sister is pretty neat, and I hope her little brother is as awesome as mine. Lexie is doing great, and Greg came through the whole thing quite well, also. I'm sorry for not updating you sooner, but as you might guess, things have been busy here! The happy new family! Subscribe to: Posts (Atom).
Torie's Story: December 2011
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Saturday, December 31, 2011. T 695 The End of 2011. We wish everyone happy Holidays! I guess I better get one more post on here to make my numbers for 2011 look at least a little better. I honestly don't know how I manged to keep this up before! We went to Orlando December 3rd for Torie's Make-A-Wish, and we had a spectacular time! You take me to Disney now? Subscribe to: Posts (Atom). 239 N Ash Street. Fruita, CO 81521. What is MPS I? Want to know more? Ronald McDonald House - Twin Cities.
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saving grace
A Family Journal of Hurler Syndrome. Saturday, July 2, 2016. Words cannot express the pride and joy I feel, so I'll just share it with you this way. In addition to this amazing progress, Gracie has been given a green light to prepare to head home to Florida! We're in the process of making arrangements to bring her home in about a week! Labels: Back at the RMH. Chillin: Life In Minnesota. Sunday, June 26, 2016. They say that God never gives you more than you can handle. I wish he didn't trust me so much.
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Gracie's Blog
Hello everyone and thank you for visiting my blog. Please leave your comments. I will try to keep my blog updated with the latest news and events. Sunday, December 25, 2011. My Christmas presents and tell me what you got? Wow I am amazed I got everything I wanted. did you guys get what you wanted? I got an I touch ,laptop,and lots of candy did you like your Christmas. did you hear Santa Clause or the raindeer? It feels like I'm rich.what do you feel like? Were making yummy gumbo. Friday, December 16, 2011.
Gracie Who?
Memoirs of a childhood. Thursday, October 22, 2009. And now I have oaks in my life again. What a sweet feeling. To be among new old friends. To walk amongst them and feel their strength and wisdom. To recall the sweet memories my old friends shared. It is a new blessing in my life and I'm so glad of it. Monday, October 12, 2009. I hope everyone who lives near me is taking the time to enjoy the beautiful symphony being. Happy first real snow day everyone! Wednesday, September 23, 2009. Nothing has happene...
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