1-16-08
January 16th, 2008
What a rollercoaster ride today has been. Lydia’s fever cleared this morning and she was back to being herself. We had a good time playing, she played Bop It with another visually impaired gentleman from Missouri down the hall. She was even patient while he was learning the game. We also visited with another girl with ONH/SOD and her mom this afternoon-they arrived just a day or 2 ago.
Then Lydia started to get a bit needy, said her legs felt weak when she was standing. She has pain in lower back and bottom when sitting, tingling in legs when her legs or spine are on stretch (PT’s read:positive neural tension signs) Then she started to get her fever back. It was higher this time 38.8 C which had me worried. She has had some OTC meds to resuce the fever and now it is coming down. Momma kind of freaked out for a little while- sometimes having medical knowledge is a bad thing when your child is sick. It seems all is OK now, the nurse just took her temp and it is 37.0. Looks like I might be able to sleep tonight afterall……at least until she wakes up at 3:30 am and says “I’m tired of laying down!” (This is my usual wake up call)
Lets hope tomorrow is a wonderful and worry-free day!
Entry Filed under: onh,Uncategorized
18 Comments Add your own
1. Lanette | January 17th, 2008 at 12:19 am
Hello. Ok, the third time better be a charm at me figuring out how to actually get this darn comment section to go through to you. Heck, you may already have my previous 2 attempts. Yes, Lydia I am not very slick on the computer….but I am trying….for a third time! I watched American Idol last night and thought of you last night…to bad I didn’t have any “candy corns” around! My thoughts and prayers are with you always! I would go on further but last time (my second attempt) I rewrote my first attempt and it rejected my comments. I better take a break from the computer for a bit. Lanette
2. Margaret Turner Bilderback | January 17th, 2008 at 12:45 am
Julie,
I pray for you many times a day. I pray that Lydia will be able to see and it is as painless as can be for both of you.
God Bless You.
Margaret Turner Bilderback
3. Melissa LaHay | January 17th, 2008 at 1:40 am
Lydia-
I watched American Idol last night too and thought of you. You are so super brave. What an experience you must be having. Hang in there!
Juli-
You hang in there too. Everyone is praying for you both. I can only imagine how hard this must be for you–no mother likes to watch their child suffer. Hopefully it will all be worth it in the end.
Lots of love and prayers are sent your way!
Melissa
4. Alica Cochran | January 17th, 2008 at 1:56 am
Juli,
Alica Bohannon (from Bismark) here. Just catching up on your blog. Wow, how brave of both of you. I am amazed at all you and Lydia are going through. I’m praying for you both and hoping your days become are easier.
5. miss jennifer | January 17th, 2008 at 2:40 am
Hope things are better tomorrow and you are able to out and about. I do miss our meeting during Adventure Club, but you will be back before you know it.
Ms Jennifer
6. Kathy Herk | January 17th, 2008 at 2:53 am
Their are many ups and downs but hopefully there will be more ups than downs. It is so hard to sit by but hang in there you know Lids the best and she needs you both. Glad to see she is teaching others her favorite game. My fourth time posting I hope this goes through. Lydia we are all thinking of you.
7. Kathy | January 17th, 2008 at 3:03 am
Hope today and ever day gets better. doug and Juli hang in there. No one knows Lids better than the two of you. Hope you find something decent to eat. Lydia you are so brave.
Kathy, Herk , and famlly
8. Jen McKee | January 17th, 2008 at 3:55 am
OK- you two deserve a stress free, hang loose day in China. I’m wishing you lots of sunshine, rickshaw rides, and yummy food for the two of you to enjoy.
And Lydia- I think your teacher Mrs. Rowe might be Jakob’s Sunday School teacher at Our Lady of Lourdes. So this Sunday I will ask her and if so, I am sure we can get Jakob’s class to say a big prayer for you. Never hurts to have more.
9. Cleo Kottwitz | January 17th, 2008 at 5:17 am
We understand why Momma would be uptight! Sounds like a very challenging situation for everybody, but hopefully the treatment is leading to postitive results. We’re thinking of you often and keeping you in our prayers.
Here’s a big hug for both of you!
Cleo and Judy
10. Raquel | January 17th, 2008 at 6:09 am
Hi everyone I hope that Lydia is doing well! That is a high fever and I was glad to hear that it is down. It is very interesting from a medical standpoint and I am not sure that I understand it all but I love being able to track how you guys are doing. Be strong…I know that you will but don’t forget to take care of yourselves as well. I talked with your aunt shelley yesterday and I know she is saying lots of prayers!!!! I hope that all goes well.
Raquel
11. Ms. Christy W. | January 17th, 2008 at 7:32 am
Hey Lydia Lou,
I have been having trouble with some of my post posting too so I hope that you get this one. I am so glad to hear that you are making friends while you are there. I hope by time you get this message that you are beginning to feel a little better. I watched American Idol last night and saw Ryan Seacrest. I hope that just the mention of his name is making you laugh and smile. Keep feeling better.
Christy
12. Lexi! | January 17th, 2008 at 7:43 am
i am so sad right now!! i hope i can talk to all of you tonight!! I wish i was there with you Lydia!! I know you know how much you mean to us, especially me!! You are in our hearts non-stop and i just pray this fever is just a one time only. Doug and Juli i hope you two are doing ok, its the worst pain to see your child hurting, and i am sure this language barrier is really trying right now!! I love you guys and hope that as you are waking up soon you are off to a much better day!! i hope you are all able to breathe a little easier as you start a new day there!! I love you Lyd’s and we never stop thinking of you!! Hope to talk to you soon sweetie!!!
Lots of Love
Aunt Shelley and family
13. Ashley | January 17th, 2008 at 10:28 am
Lydia and Juli,
Our thoughts and prayer are with you both! Everyone sends thier love and support! We love and miss you both! Lydia, you are so brave! You’re doing a great job! We are very proud of you! Juli, you are such a strong person! Hang in there!
Love,
Ashley and Garrett
14. Vickie | January 17th, 2008 at 12:34 pm
Julie and Lydia,
Just wanted to let you know that we have been keeping track of your trip. You both are in our prayers everyday and our whole church is also praying for you. Take care.
Love,
Tom, Vickie, Chad and Katie Maxwell (Jarvis)
15. Karen | January 17th, 2008 at 9:37 pm
Okay girls, glad to hear there are some people there to hang out with and help keep you entertained. Last night Michele closed yoga with a silent, eyes closed 10 minutes to send some positive vibes your way. I also thought I would give Lydia a Ryan note: on Tuesday’s episode of American Idol he rolled around on the floor with some lady’s purse. He is so goofy.
16. sandi Richardson | January 18th, 2008 at 1:50 am
Hi Girls!
I have been keeping track of you blog and have asked my church here at the lake to put a piece about your trip in the bulletin! We will be praying for you daily! Hang in there! You are two of the strongest & toughest gals I know! If anyone can do this, I know you can! Juli, Clark’s cousin contacted me again for more info about you & Lydia and there might be a possibility that someone is interested in doing some sort of docum. work???? i sent him you e-mail address and web sites. Even gave him you mom’s phone # if that is ok??? Also, I’ve been thinkg about getting a benefit organized for when you get home. let me know when you think you guys will be ready for such a thing and I’ll contact David Hawbaker to see if his band can come and play like he suggested??? Take care and God Bless! I think of you daily! love ya! sandi
17. Susan Witt | January 18th, 2008 at 9:13 am
BSSHS wrestling parent here. You are all in our thoughts and prayers. This early in the process you may have your hands too full to even begin to think about coming home. However, I sent Doug an e-mail that is for both of you (1/15/08) regarding an opportunity for donated follow-up eye doctor care for Lydia when you return home. I do not have your e-mail address, Juli. See my e-mail to Doug for details to evaluate whether this is something that might be desirable and/or work for you and what is needed to pursue that. If for some reason the e-mail did not go thru and you are unable to extract my e-mail address from this system, you could e-mail one of the other coaches and ask them to give me your e-mail address.
Best wishes,
Susan Witt
18. Nicole Beddoe | January 18th, 2008 at 11:45 am
Wow, it is amazing hearing how your journey is going. Lydia you are truly the bravest girl I know! I just wanted to check in & let you know I am thinking of you two and praying for the best.
Juli…I know what you mean about the “marketplace” when I was in Chinatown in NYC I thought I was going to throw up & I am not even a vegetarian!!
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