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Jana Nickle's Discussions
Night time bed wetting
Replied Oct. 27, 2009
Therapeutic Horseback Riding
Replied Jul. 24, 2009
Therapeutic Horseback Riding
Replied Jul. 11, 2009
Jana Nickle's Page
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Latest Activity
Thanks for the help guys!!! Unfortunetly we havent broke ground yet. I still continue the diapers at night and changing sheets a few times a week. I probably am to blame for some of it. I havent been willing to get up in the middle of the night to t…
rebecca, does he take himself to bathroom yet?
Profile Information
- Relationship to Fragile X
- Parent
- Location by State or Country
- Utah
- Ages of affected family members (check all that apply)
- 7-10, 11-14
- Genders of affected family members
- Male, Female
- Fragile X Issues in the Family
- FXS
- Favorite Ice Cream Flavor
- Banana Nut
- More About Me
- Im a mom of 2 wonderful kids with FXS. Emily and Avery. Emily is 12 and Avery is 8. I am a part time hairdresser in a local Day Spa. I love spending my free time scrapbooking, making cards, reading and studing the Word of God and just hanging out with my family. I've been married to my wonderful husband, Jared for 15 years.
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Comment Wall (17 comments)
- At 10:44am on December 23, 2009,
Heather said…
- Thank you for responding and giving
me hope. I hope my son speaks at 4, or maybe earlier if I'm lucky hehehe....I guess it just happens when they are ready. If you don't mind me asking, during the time he goes to school how many pvt. speech therapies did you do during the week after school?or did you just do the speech therapy in school? Since my son is nonverbal I feel a little more after school is needed. I do 2x/wk after school (1/2 hour sessons). Happy Holidays:)
- At 9:51pm on April 29, 2009,
Pam Crawford said… - Thank you, for your coments about Terah and Mariah. We think she is very special. Mariah does not have fx. She has been a true blessing.
- At 8:04am on April 29, 2009,
Edda Hustead said… - Hi Jana,
How are you and the kids.? Are the ears better?We have all been real busy. Steven is now in S.O. Golf and having a great time. Lisa is working hard to finish College this semester. We are finally geting much needed rain. I love spring weather. gotta go Edda
- At 11:44pm on April 15, 2009,
Chris Willis said… - Hello Jana
I have 2 kids with FXS as well. I hope we can discuss some stuff that may be able to help each other out. I look forward to it!
Chris Willis
- At 6:16am on April 3, 2009,
Edda Hustead said…
- Sounds like you've done your homework. Have a great day , I've enjoyed talking to you. My Shop opens in about 15 min. so gotta go work
- At 6:01am on April 3, 2009,
Cindi Rogers said… - Hello Jana!
I see that you are having the Utah Conference! Great! I am sure Tracy and Mouse will have lots more information on chewy tube and other oral stim types of ideas for you when you see them! We work privately with them and have for years (they are great!), and I am on their Board of Directors. They have been our lifesaver! They often remind me to work on one thing at a time, and it helps me a lot. By the way, I love your pictures! What handsome guys you have! Aren't we lucky? --Cindi--
- At 5:58am on April 3, 2009,
Edda Hustead said…
- When Steven was younger we took him to a Ciapractor {not sure i spelled that right]. Anyway he was a big help. He took him off sugar and gave him lots of vit. C. I believe you should have a balance with M.D. and Ciapractor.
When Steven was 6 they took out adnoids and he got a lot better.
- At 7:41am on April 1, 2009,
Rachael Gibson said… - I don't think Angel Hands has anything set up to pay online. I will check and get back to you.
- At 8:00pm on March 29, 2009,
Rachael Gibson said…
- I promise I will get the registration info to you as soon as I have it put together. I still have a few things I need to put together for it. How many people will be attending with you?
- At 6:37am on March 25, 2009,
Cindi Rogers said…
- Hey Jana!
The chewy tube I am talking about is a therapy tube product that I got from our speech therapist. If you child goes to school, perhaps a therapist there could even get it for you. I bought a huge box with a roll of 50 yards for about $50--it would have been covered by Medicaid, but that is too much trouble for $50 to me :) I cut off a piece in whatever length I need and voila! There are different grades of chewiness. If you have a ST he or she might be able to try it. Oh boy, we had the same situation with holes in shirts, and still have hand callouses to this day to some degree, but I figure it's always better than him biting me! Hope this helps. If you have any other questions, please feel free to let me know.
Cindi Rogers
Littleton, CO
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