Well we will beginning our 4th week out in Rhode Island, treatments are working just not as quick as I would like them to work. Vanessa was able to wear a regular sock and a crock on her left foot which she hasnt been able to do since before October 5th. Please continue to keep Vanessa and us in ur prayers. Unless some unforseen circumstances happen this week we should be coming home at the end of this week.
Mark and Anna Tice
Well we were informed today that Vanessa will be staying a 3rd week. Tomorrow she starts treatments twice daily with physical therapy in between. Along with the CRPS Vanessa also has two other diseases working against her. Please continue to uplift her in your prayers.
Well , last week didn't go as well as we hoped. Nessie is not only fighting crps but also enthesitis related arthritis and benign hypermobile joint syndrome .. we're not sure of what Dr. D has planned wether it be injections or surgery to relieve pressure..please keep her in your prayers as this has been very overwhelming. Thank you -Mark and Anna Tice
Today during Calmar therapy, Nessie was able to take four steps standing flat on her feet, it was amazing! She also had blood work done to rule out any other disorders.Unfortunately after treatment she had a severe myoclonus spasm in her hip, it made her curl up in a ball and burst into tears, they're extremely painful:(Dr. D is starting her on celebrex and baclofan to help with that. He reapplied the electrodes to her Hip and applied a lidocaine patch and pain pill and within seconds the pain was gone...We still have hope that this will work, thank you for the prayers -Anna and Mark
Yesterday Nessie had her first consultation and treatment, it was a little draining, but she was able to stand momentarily on her foot, which means that she is a responder;) dr. Also added a few more diagnosis and meds. But, the best part of the day was that she was able to put pressure momentarily on her left foot. Her ankle also popped ,Dr. D told us it was due to her EDS. Right now we're waiting to get labs, for her antibody study.Thanks so very much for your encouragement and support. God bless-Anna and Mark Tice
Finally made it to RI around midnight, had a 14 hour drive , were exhausted but looking forward to Nessies appt. Later today;) Thank you all for the prayers and support, we'll keep u posted . God bless-Anna;)
11 hours to go before we get to RI, thanks to all of you.As of now we do have a room at the Ronald Mc Donald house(huge blessing), feeling hopeful and a little anxious. Hoping to post videos or pics. Of Nessies progress;) we had a teary good by with my youngest daughter, who had to stay for school purposes, however we did have a sweet time of prayer and lots of hugs before we left. Taking all of your encouraging words with us , please keep the prayers coming. Thanks again-Anna;)
I'm so sorry that it's been a while since my last up date, we've been busy and I was quickly updating on fb. Nessie ended up having to get x rays for kidney stones again, so far so good. Dr. Added a new med .to help with digestion and stomach upset. However, I must say that we've been overwhelmed by the outpouring of love and encouragement on her site , to everyone we so greatly appreciate it. I do need to say a special thank you to my husband's union family, we were blown away by your response to help us take care of our girl, it's truly been a blessing..we've even recieved phone calls from fellow blet brothers who've encouraged my husband. Yesterday we had a time of counseling and prayer with one of our pastors...and as I closed my eyes I thanked God for everyone of you. Things have been getting a little busy as the day is getting closer, but I will do my best to keep everyone up dated- Thanks again and God bless, Anna
Nessie woke up this morning with a few things that were heavy on her heart, so we prayed and put her worries in God's hands.I think sometimes as parents we can get caught up in our daily stresses and forget that our kids also carry their own burdens and worries and sometimes need us to come along side of them And truly listen.Not always giving advice, but simply listening and going before God with them in prayer, this is something I no longer take for granted, in fact I cherish it. She also decided to attend school this week and catch up on a few test and tough it out as long as she could:) I know as parents were supposed to be examples because our kids are always watching ,well today she was my role model! Take the time to listen and pray with your kids you never know what kind of burdens they could be carrying ! I Peter 5:7 Cast all your anxiety on him because he cares for you.
Thank you to all that have donated, please keep sharing. 6 days til we leave for R.I. still have quite a bit to raise for our two week stay. Checking hotels, as of now Ronald McDonald house has a waiting list and today I found out that R.I. has a 13 percent tax on everything. Please keep sharing. God bless everyone who has helped with sharing our page and donations- Mark Tice the determined dad
This has truly been an emotional rollercoaster for us and our faith has definitely been tested, as Nessies rhode islAnd appointment gets closer I'm beginning to worry about the "what ifs", already researching and planning future treatments, but then I have to just take a deep breath and remember that God is in control of this and he has a plan for our Nessie. Jeremiah 29:11 days, 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 a hope and a future ". This is the verse that I'm claiming for Vanessa, and you've definitely helped give us hope.I've heard that God has angels on earth that work thru people to help others, that's what you've become for Nessie. And we are forever grateful to u for this. Nessie has an appointment on Monday with her pain dr.to see if he can do something for her hip until we can get to Rhode island, so to all of you prayer warriors, please pray that he can help her. I will keep you all posted. Much love and God bless - Anna
Today was a better day for Ness, I'm going that her night is just as good. She was greatly encouraged by everyone whose donated or posted well wishes. It's truly been a blessing to see her site shared and re-shared by so many friends. When Nessie begins to get discouraged she looks at this page and it has become a reminder to her that so many people care about her, so by supporting her and posting kind comments, you've become part of her cheer squad , reading your posts and seeing your donations puts a smile on her face , so thank you all again for showing love to our girl ... Her little sister mikayla would also like to say thank you for helping her sister;)
Continued from last post.....other then surgery to her spine ( spinal cord stimulator implant) the rest of her options for pain management are not covered by insurance. So your donations are not just a dollar sign,they are gifts of hope to give Nessie a chance for a better life...so thank you all again . Youve become part of her encouragement team, if any of you have met her,you know shes a hugger,and adopts everyone she meets,she wants to give u all hugs and eants to be fb friends with everyone;) So from our hearts to yours , xoxoxo and God bless you for giving our Nessie a chance for a better life.
Nessies pain in her hip Bone has become unbearable at night, she wakes up screaming in pain, she said," it feels like a big wood Chuck bird ( a.k.a wood pecker, that's what she calls it) is pounding on her non stop, while a hippo sits on him on fire" , she has an appt. Monday with her pain dr. And we're praying he can do something for her to bring her pain level down until we can get to Rhode Island. She's already had a few nerve blocks, but they only last until she comes out of the anesthesia. She's asked us to put her into a coma so she can get some rest , (this is an extreme treatment that I'm very nervous about) .As of now we're praying that treatments in Rhode island will work, they are the least invasive of all of her options that are left. Other then surgery to her spine
Had another all nighter with Nessie, praying we can reach our goal soon, ten days till we need to leave for her treatments in Rhode Island. Every penny counts, thank you from the bottem of our hearts for helping take care of our girl, we are forever grateful!
Our daughter Vanessa (Nessie) is an 18 yr. old Sr. at Jimtown High. She was born premature and has had multiple health issues,epilepsy w/gran mal seizures,low immune system,scoliosis,asthma ,as well as cardiothoraccic surgery at age 15. In June of 2011 she was hospitalized with organ failure ,other then putting her on several meds. to help her continue to function, the drs. could never seem to find the root cause. With meds. and physical therapy she was able to have a grace period. Then in october of 2012 nessie had to be hospitalized again with organ Failure and severe pain, this time it affected her left leg, after an mri the drs. also discovered an adenoma. She then spent the month of january 2013 at the cleveland clinic,their she was diagnosed with crps and with new meds. treatments and intense physical therapy she was able to return to school (after missing 95 days). Since she was feeling better(in remission) , she decided to try out for color guard(it was her first time being able to participate in a school sport) we were a little nervous about it ,but supported her. She worked hard during practices and learned to cope with her pain and had physical therapy 3 times a week. In oct. 2013 Vanessa was marching out to the field and felt her left foot explode, it was an excruciating pain and she felt like a knife had went thru her foot. We took her home and gave her pain meds. , but by the next morning her foot swelled up to twice the size and she had no feeling in her toes. She couldnt even soak it in water because it burned her skin, from this point on she could no longer wear a shoe. We tried every treatment possible acupuncture,deep tissue massage,spinal nerve blocks,tens unit,etc. Other then help with minor swelling,these treatments did nothing for the severe pain that she was experiencing. After Mri's and Xrays drs, found more problems not only is Vanessa in full CRPS flare up (complex regional pain syndrome),which has no cure, but they also believe she has Ehlers Danlos syndrome (EDS) Vanessa,s pain has now gone from her foot to her calf and now onto her hip,shes also beginning to experience hand cramping,Nessie also suffers from scoliosis as well as other back problems ,so getting comfortable has not been easy. She is now on crutches ,but is having difficulty with that because of her pain.As of now, We have 2 new options for treatment- Prolotherapy and Calmar scrambler therapy,Unfortunately neither of these treatments are covered by insurance. PLEASE help our Nessie get the treatments that can help her get back to her smiling happy self. The pain has become completely overwhelming for her and we need to act fast as she is continuing to get worse. We know that God has a plan for Vanessa and we have faith that he will bring her thru...as an infant we were told that she would have a lifespan of about 2 years, well she's proved the Drs. wrong :) Help her to continue to do so! Vanessa has an appointment on Jan. 20th for the calmar pain center in Rhode Island, please help make this possible. God Bless, Mark and Anna Tice
hey, Mark and family. Mike Davis here. Engineer in Pensacola, Florida for 38 years with CSX. Hope miss Vanessa is doing better and will continue to do so! Saw the article in the BLET magazine and wanted to help out. Let me know if there is anything else I can do for yall.
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