For I know the plans I have for you declares the Lord, plans to prosper and not to harm you. Plans to give you hope and a future.
- Jeremiah 29:11
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December Update on Jessica and Special Request
Hi All,
I wanted to be sure and update you and wish you a very MERRY CHRISTMAS! I also wanted it to be upbeat and cheerful and kept waiting for that. But decided I better just suck it up! I will be honest I have had quite a few days the last few months where I just wanted January 2nd to arrive. Holidays are tough as memories flood your mind and you try to embrace the good things going on now but miss how things used to be. But I look at my children, both at home and at my Christmas Tree and I am reminded how blessed we still are. I know I say it a lot but I really am so grateful to all of you who make our lives easier with your love, support and understanding. I am fully aware we would not be where we are without you! *Which leads me to warn you, I am going to ask you a favor to share a portion of this blog on your page this month as someone else needs our help desperately. We will be sharing our 10.3.10 prayers with another family this week. Also, many ask to get an update on Trent (Jessica's Brother) once in awhile. Well, Trent just got his first job at Nutri Shop and the big news is he just got his first acceptance letter into college also. So he is very excited. His Mother is too ......Just not looking forward to his room being empty next year :(
Ok I will fill ya in on Jess before we get to the very serious request
This has been a year of many ups and downs with Jessica’s health and it has been so heart breaking but she is doing great this week. She has been very perky and getting back to doing small math problems in therapy using the yes/no buttons along with other small tasks. I put a new button on her bed that yells “ MOM” so if she needs me, she can push the button and get my attention. We are still in the beginning stages of this, so I can’t confirm whether she means to hit it every time that she does. But I promise you, its amusing us as I answer her EVERY time she hits that thing whether I am in the kitchen, the bathroom ...I come a runnin! I will keep you posted on the progress. We are still figuring some things out with her nausea as well, but it seems to be slowly improving. Poor baby! Please pray for her on that one.
IBRF was going to come out this week to get our last tests for the year but they have ended up needing to purchase new traveling equipment so it may be awhile :(
*Now some of you are friends on my personal page, so you may know what I have been working on the last few days. I will add the link to the news story below. The next few (ok many) paragraphs may make you very uncomfortable and it may not be what we all want to think about as we are wrapping our Christmas gifts and sipping egg nog but sometimes life doesn’t allow us to postpone reality for some. We can sit back and say “ wow that’s so sad and keep on shopping or maybe we can think outside our own comforts and try to imagine if it was our family member and do something about it. I ask that you share, pray, or send your love and support to this family.
At the last few fundraisers I introduced a goal of our foundation outside of the much needed funds for Jessica’s ongoing care, but also the goal for getting specialized testing for all TBI patients. The same tests that revealed to us that Jessica did in fact, have some brain activity that she could improve on with therapy and time. Keep in mind we had to find IBRF on the East Coast and pay for these tests. It was over a year later she began to be able to use her buttons. Had we not had that test, I am not sure we would have even thought to try those buttons. Jessica would be in there and we wouldn’t have known.
This past week I was reminded (while in my own pity party) of how far we’ve come and how far I have to go on helping to make sure what happened to us doesn’t continue to happen. I have been praying for guidance on where to begin and honestly have been so caught up in our own stuff I haven’t been listening for those answers to well.
Then, Jessica and I were watching the news when a story came on of a 13 year old girl who was on life support and without the families consent the hospital was going to take her off and scheduled the coroner to come get her. Of course this got my attention. I am like many others who know there has to be more to this story so I had to keep digging. I… NOT like many others don’t automatically believe if the hospital says she is brain dead than she must be. I have met some “once considered brain dead people” and they will agree more needs to be done. Memories started to flood my head as I heard so many similarities. Memories of complete negligence from the nurses and compassionless people talking to me about my daughter as if she no longer mattered. Talking to me with less compassion than if they just told me I was going to have to put my dog down. I bet that statement sounds disturbing. Try living it! I decided I needed to make sure this family knew what tests were available to them but probably not being done since most hospitals don’t do them and in this case I would almost bet they don’t want them to be done. I was right. They had not been done. The harsh reality is this hospital may be looking at a very very large lawsuit. (Just my opinion) A dead patient settlement is a lot less expensive than a patient with long term disabilities settlement. Another disgusting but harsh reality. My question is if this happened in your hospital wouldn’t you want to provide whatever this family asked. Is waiting for them to have Christmas too much to ask? Really? Oh I forgot….We don’t know what their insurance will cover!
This story brought some very horrible memories back to me. But instead of curling up in a ball and reliving them it only fired me up to follow through with a promise I made to Jessica 4 years ago. We need to make this count for something more than just us. I haven’t forgotten the horror we lived not just because of the car accident itself. But because the 6 months of living in hell while I watched them daily, make life threatening mistakes with my daughter and then treat me like a criminal for being upset and trying to get me removed from her bedside.
We don’t want to believe that if a child is suffocating in a hospital bed and we are yelling for help that we would be ignored or put off. That they would treat you as if you’re just being paranoid even though the symptoms and monitors say differently. We don’t want to think it is even fathomable that we would not only be dealing with the fact that our child may never be the same or gone in the near future and at the same time have to go to court or the news just to have our child’s life be treated with respect.
I am fully aware that we don’t have all the details and that many will think this family just doesn’t want to come to grips with the loss. I am sure that is some of it. Who wants to? But would you trust this hospitals findings at this point especially knowing that the type of testing they do has been wrong in the past? Has this hospital shown they had this family’s best interest at heart when they scheduled a coroner to come get their daughter without having consent to remove her from life support? You might think that its not the hospitals fault and there is always risks with any surgery..True….. but if you were this family who’s daughter went in for a tonsillectomy and came out of surgery talking only to ask for help for HOURS because she started to have blood come from her nose and mouth would you fully believe they knew 100% about anything? Their attorney (who is not currently getting paid) was able to buy them time…. Until today to get tests done from an outside source that both parties agree to. My concern is…they will just be doing the same tests……….. just somewhere else. L
Ok I will get to my final point….(If I haven’t lost you all away by now by my heart felt ranting!) There are tests that can be done that just aren’t done normally. The QEEG vs just an EEG and a Perfusion Scan. I am not pretending to be a doctor here. I have just learned a lot by personal experience and conversations with specialists from around the world the last 4 years. These tests could possibly confirm fully whether its time to let go or not. I know of both results so its not like I am fighting for a positive result. I am fighting for accurate results. Using the technology that is available but not being used!
I know we then get into the whole quality of life discussion and that’s a whole other novel, for another day. I am more open minded then you would think on that subject. But that’s not what this is about. This is about respect for human life and educated decisions with all of the information that could be made available if it weren’t for the ALMIGHTY DOLLAR!
So I ask you today to please send your thoughts and prayers up for Jahi McMath and her family or better yet...SPEAK UP AND SHARE TOO!
May God bless all of you and your families this CHRISTMAS :)
10.3.10 always for you my sweet Jessica
and Jahi too
November 21, 2013 at 3:58pm
Once again I apologize for delayed update. Life is always such the roller coaster with our sweet Jessica :(.
(Scroll to * for just an update on Jessica's health/recovery)
First I want to thank all of the people who came from all over to attend our most successful Pasta Feed to date. We had close to 400 people attend. We raised approximately $15,000 and got 11 new commitments to our 1 of 500 members! We apologize for the longer lines this year but we literally only had 100 people reserved just two days prior. We had no idea our numbers would be so high this year. Thankfully Pops and I think big and thought we better be prepared if a miracle happens and we hit over 350! LOL It was awesome!
Thank you Ottaviano family for all your wonderful food and hard work. We have so many people that ask us if we will be selling the sauces next year because the food is really that good! We are blessed. Thank you to the Journey for Jessica Team, friends and family who baked and helped with all of our event tables.
It was such a great fun night of hanging out, great food, great wine, great Bingo and Raffle....... The energy in the room was just amazing. I also want to thank the Stow family for attending and bringing Bryan who was just so much fun. It was also a night where I feel we were able to educate more people on TBI and the IBRF protocol and daily routine for Jessica that people are supporting. I promise I am working hard on being able to do that more so not only do you fully understand the process but to hopefully help others in the future.
We received more bad news from the state and we have been cut back again :( Certainly not the direction we need! We are coming close to the end of the year and although we fight and fight to raise funds the battle continues to get harder. Thankfully I have faith.....Good things are coming and we are blessed to have what we have!
* Now for sweet Jess. It seems every time we get over one thing another occurs. Luckily she was healthy enough to attend the Pasta feed but quite often when there is a lot of external stimulation she closes her eyes and doesn't seem engaged when actually she could be. But I am glad she was there to experience it all. When we got home I talked with her about the night and told her that the whole night was just for her and how much people still love and support her. Her face got very different as if she was crying but not sure if it was happy or sad .... The next day I asked her if she liked seeing everyone and she hit the YES button.
In between my surgery and not being able to lift her and her being so sick off and on I haven't been able to work with her communication lately so not a whole lot of update there. Due to some issues with Jessica getting one of her medications Jess got quite ill for a week from withdrawals. Its very frustrating when she goes through so much and to have avoidable things affect her just breaks my heart. She is such a trooper. Needless to say it can make for a bit of depression for us.... both I'm sure. :(
The good news is Jessica's Neuro Feedback continues to improve and she is on an upswing with her general health. IBRF will be traveling to our home to run another QEEG the first part of December so I will be sure and update you when we get the results from that as well
I will be posting the video of Jessica doing her therapy using the yes/no buttons and the one Dr. Defina made for us for the Pasta Feed talking about Jessica's last QEEG. Feel free to ask questions it can be a bit clinical :) LOL.
Well, I wish you all a very Happy Thanksgiving. Please enjoy your meals and think of sweet Jess. It happens to be her favorite meal usually. This year you will have to enjoy it for her. xoxo
(1 OF 500 MEMBERS PLEASE CONTACT ME PRIVATELY IF YOU WERE UNABLE TO ATTEND PASTA FEED TO RECEIVE YOUR GIFT). EITHER HERE OR AT JOURNEYFORJESSICA@GMAIL.COM
IF YOU WOULD LIKE TO BECOME A 1 OF 500 MEMBER OR RENEW FOR THE YEAR PLEASE GO TO
https://www.wepay.com/donations/jessica-huse-donationmonthly-pledge-account
Copy of May 20th Update
by Jessica Huse :) (Notes) on Monday, May 20, 2013 at 5:45pm
October 4, 2013 at 6:30pm
Hi All, (skip to *** to get straight to Jessica's stuff) but see the surprise at the end!
It seemed like forever since I updated and then when I looked at the last one.....it has been forever! Sorry!!!!! Things as usual have been very busy for me. I have been working on many projects and took on a very p/t job in addition to being with Jess, the fundraising and my ministry class so needless to say. EXHAUSTING! LOL Those of you who are friends w me on Facebook may have seen the pictures from New York/New Jersey where I finally get to do more of really what my heart wants to do and that is not only raise funds for Jessica but to raise awareness and get help for all TBI patients and their families. I spoke at an IBRF fundraiser and was blessed to get thumbs up on my speech from Tony Orlando :) (Those of you under the agT Many people are told (like us) that they are vegetative when actually they are in there. This will help patients and their families so much. People can stop looking at us as if we are crazy or send loved ones away thinking no one is in there when they are. I believe it would give patients like Jessica more understanding and compassion. So please send your prayers our way for this goal of mine. I think it could be huge!!
**** Jessica is doing great. We truly seem to be out of the woods with her pneumonia stuff. She has been very alert and doing well in all her therapies. We have changed the IBRF protocol of Neuro Feedback and she has being doing well with it. When Pops and I got her standing last week I decided to mix things up a bit and do Trivia with her. I strangely don't know what to ask her so often that would be interesting enough for her to be excited about. Well Trivia definitely worked. She was responding much quicker and was very accurate. We did Bible Trivia. I asked her tough questions also. Like was Moses Jesus' brother? Ok that was easy..she said NO but I asked her if Aaron was Moses' brother and she said YES. I then yelled into the family room to Trent and his friend Austin and asked them the same question and hmmmmm Jess knew more! It was fun to watch her seem to be excited about answering those. Thank you all for keeping up with Jess and for your continued support. It is greatly needed. We unfortunately have had to cancel almost all of Jessica's professional therapies due to lack of funds but we are still able to get the Neuro Feedback and hope to raise enough this year to continue with the IBRF Protocol.
***Which leads me to this. OUR PASTA FEED IS BACK!!! Please come have fun with us while we raise money for Jess. It is going to be such a fun night. We have great food by the Ottaviano Family again. Bingo and Raffle Prizes. Oh...and wine :) Last year was so great and this year will be even better. We will be blessed to have Bryan Stow and his family with us. I am thrilled. Also to our 1 of 500 members we have a surprise for you!!! So please when you order your tickets let us know you are a 1 of 500 member.***
Click here to purchase tickets: https://www.wepay.com/events/192209
Become a 1 of 500 Member: https://www.wepay.com/donations/523228321
PS: To Great Grandma Wells who gave us 101 sweet, loving years. You are missed!
Look forward to seeing you all! 10.3.10 always!
May 20th @ 5:15 p.m.
Hi All,
First I just want to thank everyone who participated in coming out for Jessica's Birthday. We were able to raise $2700. For a dinner fundraiser that was a record breaker by far! It was also one of our most fun ones. Rosie's was amazing to us. They brought in huge bouquets of balloons to make it really look like a Birthday party. So nice of them! I can't tell you how much you coming out and just being there with us meant. Amazing! I of course uploaded all the pictures on my personal page that night but need to switch them over. Promise I will work on that.
Jessica continues to do well. She seems to slowly but surely be coming back to doing her therapies again. Although she still often looks tired on the outside (which makes me super sad) her alertness in testing continues to improve. The last time we got her up and standing at the counter she was back to answering questions almost 100% correctly. Its been months since that has happened so that is huge!
I asked her if she had gone to her Grandma's for dinner that week. She said yes (using buttons) I asked her if certain people were there. She knew who was and who wasn't. So Michael realize you owe your cousin a dinner! (In his defense he had to work!) LOL I even asked her if her cousin Nick brought his girlfriend (that she had never met before) and she knew that yes, he brought his girlfriend. So keep praying we keep moving in this direction. Although I know we will. (Professin it!)
I currently have been working on a project that will be coming out in two Cinelux theaters hopefully this week. Finally getting the ball rolling in not just helping promote our 5k this August but raising awareness for all TBI patients.
Thank you to the Stow and Chang family for allowing me to include their loved ones. So look for it! Please keep in mind I am an amateur with my budget being...... FAVORS!... thats it! I haven't even seen the final cut on it. LOL
But I have seen those pet photo slide shows up there so I figure I am safe :)
We also have to really fun fundraisers coming up. Please keep a look out for the flyers on this page. One is a Dinner Dance June 15th and the other is a family movie night the week MONSTERS UNIVERSITY comes out. I know summer is busy but if your in town we would really appreciate your support.
Currently, Pam has put herself out there doing a before and after makeover contest. If she wins. IBRF/Jessica will receive $5000. Please consider clicking on that :) You can vote up to 5 times a day. THATS FREE :)
We also are currently updating the 1 of 500 fundraiser as we are further ahead by at least 5k than the page shows from our offline donations. So although we may not be on target for funding for Jessica we are getting there. I just keep praying and working to help that happen. **** I can't tell you how much how all of you have helped us. As unexpected costs came up because the State continues to mishandle funds we often do not see her checks for months at a time. So by having these donations we have not lost our aids that come at night to care for her so we can sleep. Although that might not sound like a huge deal. It literally is what keeps us going. So thank you.
Hugs,
10.3.10
Friday April 19th@ 2:55 p,m.
Hi All, I just wanted to touch base since I see it has been a month since my last update. Jessica's 22nd Birthday gathering/fundraiser is next week. I hope you will be able to make it. Rosie's is offering 50% of the proceeds to go to Jessica. That is an offer like no other of that kind. We are so grateful to them. Your participation in our fundraisers like this and the 1 of 500 have blessed Jessica in so many ways. We just had our 12th Hyperbaric session. She has tolerated them well and it seems to be perking her up a bit so far.
As you know since her pneumonia Jessica hasn't been as responsive and communication has been less. She seems to be fighting her way back forward again. Her Neuro Feedback has been going well and the other day I asked her if she wanted to go back to bed to raise her hand. I didn't get an answer so I said..."Ok if you don't raise your hand I will assume you want to stay in your chair another hour" all of the sudden she gave a big huff and raised her hand. I was cracking up. So I have to threaten you to get you to answer me? :)
The Hyperbaric therapy assists in oxygenating the brain and actually creates new blood vessels. I have spoken to other TBI families and all that have received the type of hyperbaric treatments Jess gets have seen improvement over time. Please keep praying we move forward.
Your participation in our events is also going towards TBI awareness. I write this with a very very heavy heart.... As many of you who have followed us know the relationships we built with other families when we were in New Jersey. We lived there for 9 months and shared the ups and downs with them. I have shared many of the funny stories but today I ask for prayer. At 3 a.m. on April 13th our friend Chi passed away. I can barely type that! Of course every moment I shared singing (really badly) to him, doing bible study in his room, kissing him goodnight each night and Battling for his care as if he were my own brother came fludding back. (Don't worry Chi it will not be in vein...I promise you that!) His Mother Jeanne and I became sisters in New Jersey so of course my heart aches for her. I also had to tell Jessica. Not an easy thing to do. Knowing she can't express her emotions ....its just terrible.... Chi has millions of fans with a zilliion stories of his goodness to the under privileged and his success as not only a Rock Star but as a man, son, brother, friend and Father. You will be greatly missed my tattooed friend!
Today I was shocked yet again to hear our other New Jersey friend/"bath roomie" Soraya passed away last week as well. You may remember our stories of her as well. Her husband, son,daughter and friend never left her side. They took turns round the clock to care for her. I know she passed knowing how deeply she was loved.
I am sure you can imagine the thoughts I've battled today....all week The sadness and all those questions everyone asks when something bad happens or a life is taken unexpectedly. I know they are no longer have to fight...I know that and days like this I remember they are the lucky ones!
Someone I worked with for many years at 56 passed suddenly last week as well. The Boston bombings. It all gets your attention for sure. Not that I need a reminder of how important every minute we have with each other is, but it tests my strength. I am like everyone else.... First reaction is Why?
I find myself more grateful for the people in my life and those goofy moments that don't mean much at the time but when your looking for a smile so grateful you had those moments at all.
The verse that came to mind multiple times this week was " Trust in the Lord with all your heart and lean not on your own understanding." Prov. 5:6
I think we will drive ourselves crazy if we try and figure out the Whys. Its right up there with the What If's ..... We need to focus on the Whats...What can I do to make the most of it while I am here on this planet and trust he knows what hes doing. Thankfully he also knows I am going to get mad first before I come to this clarity :)
So I normally don't ask for prayer for myself but this week I ask for prayer for not only me but more importantly for The Cheng Family, Soraya's family, The Quinn family and of course for my sweet Jessica. May her mind not only be healed but protected.
Thank you. Lisa
10.3.10 (ps: Happy to Share our 3 a.m. with you Chi! I am not surprised)
March 19th @ 10:40 a.m.
Just a quick update. Dr. Fellus came out from New Jersey on Sunday. Kind of a surprise visit but awesome to have him. He was the doctor with IBRF who used to see Jessica daily when we were in New Jersey. If curious you should Google him. He is a genius! Love that guy. He is one of the doctors in New York that News stations will consult when there is a big story that has anything to do with the brain. Like the Gabrielle Gifford Story.
As I mentioned before Jessica has not seemed herself since the Pneumonia so getting his input is always a comfort.
It was funny because Jessica normally will only turn her head to the left but when Dr. Fellus came in she opened her eyes brightly and turned her head to the right and started waving her right hand. She has seemed more alert since his visit on Sunday. Pretty crazy we just need him to visit..really? LOL He did notice that because of the antibiotic she was taking for the pneumonia we should have been countering it with Pro biotics. Evidently if there is something going on in your gut it can affect the Neurons in the brain that can affect alertness. He also is changing one of her medications. All and all their visits always remind me how blessed we are to have them. If we go see any Neurologist at even Stanford they look at you and say hmmmm yah these things happen. And thats all you get, No one is trouble shooting to find out why or trying to improve it. If I even suggest an MRI they try to talk me out of it saying they don't have enough cause for the insurance to pay for it. It is so frustrating. No one really cares if they are taking steps forward or backwards. What is more frustrating is that 99% of the TBI population is getting that kind of care.
Last Sunday I did an interview with a local Santa Cruz station where I finally was able to start discussing these things. I continue to believe that I am supposed to keep moving forward on the assisting of changing things for TBI patients ...even if honestly I often tell God...NO THANK YOU! I am tired of fighting! Although those of you who know me know that doesn't last long. I am just not wired that way.
Well I need to get Jessica ready for therapy. Thank you for keeping up!
PLEASE MARK YOUR CALENDARS FOR:
JESSICA'S B-DAY FUNDRAISING DINNER AT ROSIE'S ON THE ALAMEDA ... APRIL 24TH.
EMERGE 5K RACE: AUGUST 10th at ALMADEN LAKE PARK
March 8th @ 3:08 p.m.
Just finished our 3:00 prayer. Hoping some of you still remember to do so for us. Although Jessica has been doing great with her Neuro Feedback sessions and continues to improve her score weekly, she seems to be having some kind of issues producing task oriented therapies.
Its so frustrating not knowing whats going on. Is it depression? Does she have a sore throat? The list can go on and on and I sit beside her just praying for her with an achy heart today. Whatever it is. My Jess hasn't quite been the same since December. I know it takes longer to for TBI patients to come back from things and thankfully I have my friends with TBI family members that remind me of that and the reminders that they eventually get back on track. Thank you Mama Jeanne and Erin. Its the little words that go a long way.
Last weekend we had a little scare but unfortunately we are kind of getting used to unplanned trips to Stanford. Don called me about 11 p.m. to tell me that Jessica's feeding tube came out while putting her in the standing frame. Thankfully the Lord gave me some peace about it. I rationally knew that this could mean another surgery for Jess but for some reason felt like she would be o.k. I very calmly said o.k. take her to the ER and when you get checked in and they let us know the plan, let me know. Make sure they don't push for an unnecessary I.V. and they know we want to get IN AND OUT as quick as possible. (Risk of infection in hospitals is crazy) It sounds totally ridiculous I know. That I wouldn't rush down there but I just know the process now and knew her life was not in danger. Of course I couldn't sleep until I knew all was o.k. but boy how did we get here? How do you get to the point where a trip to the E.R. is like going to the dentist? (A bummer but part of the process) Well, end result was all was fine. There is a balloon at the other end of the tube that deflated. We just had to get a new one. No surgery just a night of no sleep for Don and Jess and a stomach ache for Mom.
The other good news is all red tape has been cleared and I have finally got dates for the Hyperbaric Chamber. As of April 1st. Jess will go 5 days a week for 7 weeks straight as long as she can tolerate it o.k. Different patients react differently to this therapy but like everything else, ts totally worth the try. So to explain what this does. This is what I was told "It is 100% pure oxygen to the brain without the other gases we take in everyday. It minimizes secondary tissue impairment and restores the neuronal function and reopens vessels that are essential for neural brain tissue." Got that? LOL All and All we know its beneficial and we look forward to seeing the results. We have heard good things from other patients so praying it takes us forward in her progress.
In the last week I have also been approached by people who just want to help. They are planning fundraisers for Jessica. You have no idea how much that means to me. For people to just randomly come to me with Jess and our vision to help other TBI people on their hearts. I will post dates soon. We will have three coming up end of March and through April. We are also planning a fundraising dinner for Jessica's 22nd Birthday. Looks like April 24th at Rosie's but will confirm soon.
Thank you all for keeping up with us. And may God bless your weekend!
Lisa
February 13th at 6:10 p.m.
Happy Valentines Day early :) I should really change the heading on this. As weekly updates are no longer an appropriate title. Thank you all for keeping up still and sending your love and prayers.
FOR UPDATE ON JUST JESS SCROLL TO ******
I want to start by saying again, sorry for delays on these. I am really trying to balance life and navigate my best through it. Realizing that as much as I love Jessica I needed to start living a life outside of caring for her and fundraising and doctors etc. Also trying to do so with a completely different financial life. You tend to have to get very creative and make the most of two days instead of the week vacations you used to get once a year.
I have started taking a ministry class on Tuesday nights and get out with friends more and as usual am blessed to go "hang with my son Trent" :)
Its a very strange place to find yourself. I realize when facebooking with other TBI Moms that we all have had to struggle with loss. Loss of family, friends and life as we knew it. This impacts the whole family not just the immediate. Everyone coping the best they can and some do much better than others. Watching our children live this new life with their injury which has become very isolated for them as life moves on for everyone else. Knowing Jess is fully aware is a celebration but also heartbreaking to know she can't express any of her feelings. Trying to play the guessing game on what I should say or do each and every day that might fit her mood or encourage her. As many Mothers know we often feel guilty no matter what we do, and feel our childrens pain as if it were our own. You feel like if you move on with other things you are letting go or accepting this life as permanent and ultimately letting her down. But I know that in order for Jess to continue to be happy we all need to find other ways to fulfill ourselves in addition to our love for Jess, while she recovers and that it doesn't mean we are giving up. We are so thankful for the people God has kept in our lives or has sent. But in all of this we are able to see the good in people that maybe we wouldn't have taken the time to notice otherwise. So thank you to all of you who just keep us in your prayers and who reach out. It never gets old and we never stop appreciating it. God doesn't promise life to be easy, in fact he tells us it will be the opposite but he promises he will be with us. Although I struggle, I have no doubt he is carrying us all through this.
This may sound like Jess isn't doing well and thats not the case at all. She is doing better every day. I think I just had some things strike a cord with me this week that has me wanting people to know we are doing our best and how much we appreciate everyone. I had another dream.... It was awesome because for that short amount of time Jessica was completely healed and hugging me and laughing. Unfortunately I had to wake up and I realized I hadn't felt that kind of pure joy in 3 and 1/2 years that I forgot what if felt like. So I apologize if I am not my perky self but I know people want to know what was going on and why I hadn't posted.
*****Ok....Get it together Lisa :) Jessica is doing so well. We got the results from IBRF and Jessica's brain waves are increasing. Her Cognition is up. Her left brain and right brain are interacting more clearly with each other. It also showed when we asked her to imagine herself doing something she loves "wake boarding" her brain waves showed the changes that lead us to believe she was doing so. We have added more stimulation to Jessica and more neutrocuticals to her regimen. Some are the vitamins they use prior to doing stem cell plantation. WE ARE NOT doing that portion but it will be interesting to see how things change and improve. Again, Jessica isn't stopping. She continues to move forward and we continue to have faith in her recovery.
I want to thank those of you who have joined our 1 of 500. So far we just raised enough that we will be moving forward with starting Hyperbaric Chamber therapy in the months to come. Yes, more red tape!! Again, it takes a village ...and our village Rocks! Please share www.pledge.journeyforjessica.com on your Facebook pages. We have a long way to go to our goal but I am praying hard! :)
Also PLEASE MARK YOUR CALENDARS..... AUGUST 10th will be our 5k this year. I am booking you all early! :)
Love and Hugs to All.
Lisa
January 11th @ Noon
Hi All! Ok is it me or is time going by quickly? Sorry its been weeks. Holidays although a great time of year can still be a little rough for me. They tend to be a reminder of how our memories and our current life are so very different. I need to remember to be thankful and "content" in any situation. That is easier said than done but I am working on it :)
Especially with Jessica not feeling well for A MONTH. It literally took her over a month to get over the pneumonia and she had some other challenges that had me fighting the whole "Don't go by what you see" go by what you know belief I live by. She wasn't very alert for weeks and was not responding well in our therapies. I had a nurse come out and take some tests and when all her physical tests came out fine I was actually more concerned. It made me worry about her fluid again. (Brain)
Of course as in the past just when I am feeling completely helpless and praying for guidance on what steps I should be taking next... things turn around. It is very possible that Jess was depressed as well but either way...it took a month but she is back looking bright eyed again. I always have that talk with God like o.k. really? Was that another test of my trust? Could we move a little faster on the lesson please? LOL
Christmas Day Jessica seemed to start to come out of her fog. In fact one of our gifts was her reaction to my sisters gift to her. My sister reads a juicy girl book and we had gotten through the second one, so for Christmas she gave Jess the next two books in the series. Just as we opened the gift Jessica smiled. Her once in awhile smiles at appropriate times have returned and a few chuckles as well.
I was really getting concerned because I knew IBRF was coming out and wanted Jess to be at her best health for her tests.
Dr. Halper and Tammy from IBRF came out last week to run another QEEG on Jess. This time we changed it up a bit. We asked her Yes/No questions while running the tests so we can see how Jessica's brain reacts with each one and will hopefully prove what we have been seeing which is the processing of the difference between the two. I can't tell ya much but I have been told we will be pleased with the findings. Shhhhh I am not supposed to know that :) I will be having a conference call within the next week or two and will let you know as soon as we do :)
Which leads me to this.....Thank you all for supporting our 1 of 500 Pledge Event. We have had over 100 donations and 40 of them are recurring donors who have commited to a monthly amount. I just love you all so much for helping Jess. Without you none of this would be possible. You all literally are investing in not only Jessica's life but the lives of her famly and friends and most of all future Brain Injury Patients. The more success Jessica has the more this protocol will be known and shared with others. Let alone just a new mindset for not giving up on patients like Jess who would otherwise be forgotten in nursing care.
Remember, we were told Jessica would remain in a vegetative state forever. Since our work with IBRF Jessica has never stopped improving. Trust me I know it is slower than we all would like but never does she not show improvement. You are all giving her this chance. I can't say it enough. We are so very thankful.
We have hit 5% of our goal thus far but that also continues to grow. Thank you for all of you who have shared the 1 0f 500 on your page. Even if it just grabs one more person that is huge for Jess. We continue to appreciate the "Shares" on your page once in awhile. The pledge drive will be ongoing until our goal is met.
Alright. I will stop here. Jessica is probably a bit bored of looking at me type!
Thank you all who sent cards and came to visit. Jess doesn't get much interaction with friends anymore so I am thinking maybe that was the key to her perking up again. It definitely made me smile to see her around her friends. So thank you. I know it can be tough. Thank you to West Gate Church that blessed our family with gifts. They were the first gifts under our little tree and it was very much appreciated.
10.3.10
December 14th @ 12:15
I wanted to update everyone before I ran out of time before Christmas. Good News is Jessica's IBRF team will be coming out the first week in January to do a specialized test. We are going to try and do the QEEG during therapy. So we can see her brain function while being asked to do tasks. This will add information on what areas are still not connecting properly and which ones we can be stimulating etc. I am praying she perks up more by then so we get a real sense of where she is at. Since being sick her Neuro Therapy has not been as successful.
In therapy the other night I asked Jess to do different things and I can see her struggling to get her hand to do what she wants it to do. She gets frustrated and starts to huff and puff and then slam her hand down. Pops and I try to encourage her but I could tell she just hasn't been herself lately. I continue to remind her that her body is still recovering from being sick (as I need to remind myself of this because I have felt discouraged as well) I finally asked her a hard question. I put two cards in front of her and with two different emotions. One was Funny or Sad. If you had to choose an emotion that was closest to how you are feeling right now which would it be? She instantly hit the Sad card. I then put two cards down and said is it because of one of these things. I had the words YOU and the other ME. (I want to make sure she knows she can tell me if I am pushing her to hard etc.(again, taking a chance on feeling horrible for the both of us) She hit the card that said "ME". I then asked is it in regards to any of these things and I put words in front of her and she chose TALKING. I said ok. It seems like you are saying you are sad because you aren't able to to Talk. Is this correct? She hit the YES button immediately. Although it is very hard to ask these questions I want her to feel like she can express her feelings. I also don't want to lead her down a path that she isn't trying to go down so have her confirm her answers in different ways. But I really felt like she has been depressed or something. Something just hasn't been right with her. She seemed to relax more once we got that over.
I then spent the next 15 minutes telling her she has every right to be sad sometimes and I want to know. I then began reminding her of all she has accomplished since last year at this time. Of all the people who are supporting her and who love her. How last year at this time we were just starting to get her to hit yes buttons and how often she was not able to do it and now she does it every time we ask. That i used to never hear her voice and now I hear it every day. That these buttons and cards are temporary. Reminding her that she is a fighter and that because she has fought she is alive and getting better. Not to let those voices of discouragement win. That if she digs deep she knows better. Her eyes got very big as I spoke to her. Much more open than they have been all month. Pops would nod like "Keep going" she is really listening.
For the rest of our hour of therapy Jessica did much better in her therapy and chose once again to spell out I love You. I was reminded just as I need to refuel myself daily I need to refuel her even more.
Thank you so much for all your support. In addition to Face Book. I show Jessica the names on her 1 of 500 page to give her an example of how many people are participating in her progress. Thank you all so much. I know the holidays are a tough time to commit to donating so thank you. I love seeing those people who I know are students etc. and they still committed to what they could. That $10 a month feels like $100 emotionally and it all adds up! So thank you. Thank you to our JFJ team who came up with that idea and helped in getting it going. To all who have shared the 1 of 500 on your page. It is working because we see names of friends of friends. I try to limit favors but if you all could share the 1 of 500 page on your page I would greatly appreciate it. Often people need a tax write off at the end of the year and it could be a win win for us both.
Wishing all of you a Merry Christmas. Build those memories!
Lisa
November 29th @ 11:10 a.m. (To skip down to Jessica's last therapy surprise go to the * portion)
Hi all, typing from home today. Jessica is home from Stanford and doing better. They found she had pneumonia but we seemed to have caught it before it got bad. She is now home and seems to be improving. We try to keep her days at hospitals limited because TBI patients tend to get worse in hospitals due to infections etc.
This visit also lit a fire under me to go after a cause that I had three years ago but haven't had the mental strength or time to prioritize. Whenever Jessica is required to stay in the hospital they tell us she will be moved to a medical floor etc. Problem being, they always plan for her to go to a medical floor with no monitoring systems and no supervision. Nurses only coming in once an hour to check on her. Each time I have to let them know we they have three choices. To get us a room where one of us can stay over night with her or a supervised room or we take her home. Thankfully Stanford has always been accomodating and although it sometimes takes until 3 a.m. to get us one, had I not insisted it wouldn't have happened, even though she is checked in for breathing issues. No one knowing if she was choking, aspirating or even breathing. I spoke to the doctor about who I could talk to to change these policies since there clearly needs to be a change for care of TBI patients like Jessica. Since not all families or new families would know to request such things and I am sure patients are being risked and if something went wrong they would report it as "death from breathing complications" instead of death by lack of supervision.
If I was to check my baby in who has the similar capabilities (although they can cry in distress, unlike Jessica) There is no way they would put a baby with breathing issues in a room with no supervision being checked on only once an hour. The team of doctors I was speaking with completely agreed and said that there really was nothing they could do over all in regards to policy and support my requests but referred me to some agencies that oversee hospital care.
So far I am struggling to get clear direction....but know that I am supposed to follow through with this one.
** Ok so Jessica's progress note! :) Before Jess got sick we were doing therapy while standing and I put index cards in front of her with numbers. I did not tell her what numbers were on each card. I put the number 5 and the number 3 in front of her and asked "Jessica if I was to take this number and subtract this number what number would I get? I put two numbers in front of her and she chose the number 2. Then I put two new cards in front of her and asked if I take this number and SUBTRACTED this number what would I get. Again, she answered correctly. I don't know if I shared this one but thought it was funny. I asked her if I spoke to loudly to her when I was doing therapy and she said YES! I promised I would work on that. LOL Not really surprised by that answer.
Last night her night aid and I were talking about how Jessica now lets us know when she is uncomfortable in the middle of the night. That she will make sounds and hit her bed. Sometimes I am so tired I kind of mentally hit snooze like ok lets see if she stops. But then she gets louder like HELLLOOOOO wake up and take care of me!!! As we were laughing about it....Jessica began to laugh. As if she was saying YUP! You are annoying when you do that and I will make it known.
Well, thats about it for now. Thank you all for your thoughts and prayers. I am hoping Jess feels well enough to get back working on things and maybe even get our Christmas tree soon. Please see our wall for the Holiday Boutique and Art Sale with live entertainment that will not only help Jess but many other causes.
We also have a really fun event that Bay Area Cheerleaders and Dance Teams are putting on for Jess in January so keep your eyes out.
Hugs and stay safe during this Christmas Season.
November 8th @ 12:55 p.m.
First off Thank you all who came out to Georgio's to support Jessica. I don't have the numbers yet but will update you when I do. So far we have $400 raised for the Hyperbaric Therapy. We will get there!!! Please see our page for the upcoming PAMPER YOURSELF Fundraiser next month. Its a fun one :)
Jessica has had a tough week but is doing great. She had her Botox injections yesterday that she was in great need of. Due to the tone in her right foot and not enough strength in the last dose it seemed as if one of the bones had started to come towards the skin. Causing her pain with her braces. She is such a trooper. She got poked about 20 times and they don't just poke and release. They put the needle in and move it around to find the source of the contracted muscle. She was not happy. She also has a cold. Then today was taken back to Stanford to replace her tube and they had ordered the wrong one. Every time we go to the Hospital for anything her body language and sounds definitely let us know she is stressing out. So please pray for her cold to go away and peace for the rescheduled appointment.
Otherwise Jess has had a great great week. She is really showing more and more. Two days ago Pops and I had her standing and I put vowels and verbs in front of her so she could create her own sentences.
She said " I AM HAPPY" She could have chosen frustrated or Tired but she chose Happy....so of course this made me happy.
When working on her spelling she chose the letter I then L,O,V,E and then the Y but when she was picking the next letter she picked an A so I was thinking hmmm what is she going to do with the next letter. But she completely stopped picking letters and didn't move for quite some time. Then we realized. She spelt l LOVE YA! I then asked her if thats what she meant to do and she hit the YES button. It really is getting more and more exciting.
Don was so excited about our new Speech therapist he said he was tearing up. We struggle to get Jessica to do much when she is sitting and IBRF is working on how to improve that but this therapist was able to get her to respond. She also is teaching us that even if we are not sure she intentionally is hitting the button to do whatever it is she responds to. Such as DO YOU WANT TO WATCH T.V. if she barely hits the NO button and we aren't sure if she meant to. We still need to listen and not turn it on. That way if she meant to say no she is getting what she wants. If we are wrong it will encourage her to be more precise in her movements the next time so she gets to watch T.V. We are very excited as this therapist feels that Jessica is ready to do so much more.
Well I am off and running but I wanted to update you all and thank you again so much for keeping up and sending Jessica posts of encouragement.
10-3-10 as always :)
Lisa
October 25th 11:30 p.m.
Hi All! Well a quick update but a good one. Jessica continues to do great. We finally got her to the pool. In therapy I asked her if she was excited about going and she said NO! Very deliberately hitting the button. I asked if she was scared and she said YES! Again, very deliberately.
Then throughout the day whenever we talked about going swimming she would start getting vocal and looked very unhappy. My sister and I spent quite a bit of time encouraging her and letting her know she would have her life jacket and both Don and I and that we would make sure she was completely safe. Thankfully once we got there and got her in the pool she relaxed almost immediately and began kicking her right leg. We also were excited that one of the therapists there knew Jess from High School. :)
Every night we got her standing the last two weeks to do her yes/no buttons she proves she is very very in there and CAN READ. Her therapist was so excited to see Jessica. She said she went home and told her husband.....JESSICA CAN READ!!!! She is working on a referral with someone who specializes in communication devices in addition to the programs we will be getting for the IPAD.
Jessica remembers when someone visits and who. She remembers Birthdays. I have been even asking her harder questions like is 23 an even number. There is almost nothing I can give her that she doesn't know. She is 99% accurate. I recently put words in front of her that described emotions. I put the word happy in front of her and asked if she felt that way today. She said yes. That is the first time she has responded with a yes about being happy. ( I haven't asked in ages because its very hard to confirm what I fear every day) I decided to just ask how she feels at that moment instead of overall. Its so good to know she has happy moments as often I pray for that and just trust God is finding a way to comfort her.
Last night Jess was having trouble getting her hand up on the counter to hit the buttons last night and was huffing and puffing. I asked if she was mad and she said no. Then I said frustrated? She said YES.
My sister has been coming over in the morning and reading with her. I know she just loves it. Nicole tells her she wont start reading unless she opens her eyes and needless to say... it doesn't take long before her eyes open. Its a book that is totally Jessica's taste so its very fun knowing she has something to look forward to other than us and THERAPY :)
Today when I was doing speech therapy with her she got her mouth moving more than ever before. I keep encouraging her telling her that all the obnoxious things I do to her will get her talking. She usually swats at me and makes all kinds of noise letting me know she is not happy with me messing with he mouth but today... She really seemed excited. Like she also is realizing that things are coming together.
Today we received good news. I had found a hyperbaric chamber company over a month ago but needed to make sure they met all the criteria s required to be affective and safe for Jess as the kind you can get for the home aren't enough for her. Today we were told that everything meets those criterias but we need to get ear tubes placed for pressure stabilization. :( The fundraiser we are doing on Monday will go directly towards this $7000 bill. She will be going 5 days a week for 8 weeks. I have heard from other famiies that they saw the most changes after receiving this treatment. Its just very hard to find a company that will do it for TBI. I am not sure if insurance will cover the ear tubes so please send your thoughts and prayers in that direction as I can only imagine that is not going to be cheap and I don't want to delay any longer on getting this for her. We have been waiting 2 years now!
Well, thats all folks. Those of you who just want the details. This update is just for you!!!
Thank you all for keeping up with us and if you can't come to the dinner on Monday night please consider ordering a pizza to go. It all counts and all makes such a huge difference! We are so grateful. I know our faith keeps her going but every baby step Jessica makes is because we have all of you who stand with us in doing "WHATEVER IT TAKES".
Have a great week and be safe! We would love to have your trick or treater's stop by. So feel free. I will stock up on the candy!!!
October 4th 1:22 p.m.
Hi All, I know I know its been awhile. Its been a very challenging month but Jessica is great. *Scroll down if you just want Jessica's progress :)
Life as we know it continues to be a reality check for me. Not being able to work a full time job on top of the hours I take care of Jess is taking its toll. As things we own only last so long and need replacing. My car broke down and due to the amount of miles on it, I had to say goodbye to the one last little luxury :) Sounds spoiled but I really loved that car. Its a humbling experience but I could never imagine not being able to replace my car. Its those days where you sit and really have to pull out your faith and trust that things will get better. The things we take for granted. I had my 5 minutes of feeling sorry for myself but was quickly reminded that I swore when this all happened to Jessica I would never whine over material things again and that its easy to have faith when things are good but you know where your faith really stands when things are not.
I also have been fighting and fighting to get Jessica the things she needs. It is always such a struggle dealing with the state and the companies we are forced to go through its exhausting. The state continues to lose our time cards so we don't get paid. Then we finally get them and they have the wrong hours on them. The social worker let me know that she will no longer be handling our case. When I asked her who would be she said NO ONE. Well I said Thats just dandy! LOL
Her mattress that prevents bed sores popped and since we have to go through the companies the state gives us its been over a month and after 5 callsthey tell me they may not cover it so we need to sign something that says we will pay $283 if they don't cover it. Yet we found it online for $68. Had I known that we would have just purchased it a month ago and not risked it! Urgh.
Thank God we have fundraisers so Jessica can get the things she needs and we are not fully counting on her medical benefits she sometimes gets. Anyways I share these things not just to vent but for people to see how all these issues affect families on so many different levels and that we are not alone. The support for families like ours is really lacking and not everyone has the help of a community and fundraisers to get the medical help they need.
*Anyways enough of that! JESSICA!!!! Jess is doing great. She continues to prove to us that she is VERY VERY aware of her surroundings. I took photos of items around the house and put them on index cards. Then I wrote on other index cards what the items were. I showed her a picture of a cup and then took the picture away. I would put two choices in front of her. The words Cookie and Cup. I said Jessica I just showed you an item. Which one did I show you? She chose the card that said Cup. We did this with 5 different items and each time she got it right.
We were doing our bible study and the question asked something like " have you ever gone through a time where you had to wait on something and feared it would never come. Finances, Health, happiness etc?" All of the sudden Jessica blurted out PAAAAA! It was like she was saying Really? Uh...Just a little! I just laughed with her and said ya...uh no kidding huh!
Every week we are more and more convinced that she is so aware in there. How hard it must be for her to not be able to communicate. I just keep telling her she is getting there and some day soon she will be able to share more and more. You can't help but wonder how many TBI patients are out there in the same condition but people assume there is nothing there. Because on the outside, if you don't spend a lot of time with Jessica you would never know. But its not just us as her family being optimistic. Her tests that we give her prove what we think. Without funding for those tests and therapy people will never know if their loved ones are just sitting there praying someone cares enough to try.
I have been talking to Dr. Defina with IBRF on ways to raise awareness and find a way to make this protocol affordable for families. I will update you as things progress. But know....I am working on it. Jessica's experience is going to change something. I just know it.
Jessica's special swimwear came in so hopefully by next post you will see her getting swim therapy! Thank you!!!!! I love being able to show you all what your helping her with :)
Thank you Martha Duke....I see your See's Candy Fundraising Post. :) The earlier the better. Feel free to keep reminding us :)
Thank you Pam for your Jewelry Party Fundraiser....Thats our Pammy!
Pops has arranged for another Giorgio's night on October 29th!!! Please come out and have dinner with us. Although it works for take out as well :)
We will be creating a calendar with all our upcoming events. If you can't make one then maybe you can make another. We continue to really really try to have events that people would enjoy and not cost more than what you may spend anyways. So know that we really appreciate all of you who come and continue to HELP JESS HEAL.
September 12th @ 10:45 a.m.
Thank you for continuing to take the time to check in on Jess and for all who came to the Yogurtland night. We raised $600 that we plan to put towards her aqua therapy.
Jessica continues to do well.
I spoke with IBRF yesterday and good things are happening. We will be doing the QEEGs more often. The plan is monthly for awhile since Jessica's tests are showing her awareness continues to increase. We are currently working on stimulating the area of the brain that controls speech. We are making changes to her Protocol and seeing how she reacts to them. Its hard to tell sometimes how alert she is because on the outside she often looks tired but then when I watch her neuro feedback she is more focused then ever. Hard to explain, but the lower the number the better. Weeks ago Jessica's scores were in high 30s to low 40s. Yesterday she reached her best yet. She was consistently around 27.
Our schedule with her is getting increasingly busy :) We are off to West Valley to do self guided therapy. Basically we utilize their equipment. I bring my IPOD so she can "rock out" while she works out. Just like we used to. Being that most of the patients in there are older I think she brings some life to the place :) Her favorite seems to be the bike. Well its Don and I's favorite anyways. We have her pedaling for 30 min at this point. It pedals for her but by doing this reminds her body/brain of those movements while working those muscles. We hope to some day get her one for home that reads when she is initiating the movement and slowly reduces the amount that the machine is doing and encourages her to do so more. It definitely is making a difference with her flexibility.
She lets us know when she doesn't like some things. I had her using the arm bike and she kept making noise and wiggling her hand out of the glove that keeps her hand on. I was cracking up even though I think she wasn't too pleased with me pushing her. I give her little goals. I tell her ok we will do 20 then we will stop. Very much how things used to be. When I taught her how to ride a bike she cried. When I taught her how to wakeboard she cried. I would say 3 trys and you can get in the boat. Then after we were all done and she got the hang of things she would laugh and tell me I was a jerk but she was glad I did it. :)
I often can almost hear her voice telling me the same things. Some day (praying soon) it will be interesting to hear her tell me how much she wanted to smack me during those days. Yes, I even look forward to her being mad at me. I miss even that.
We also got her new braces that are making life so much easier in helping her with the walking therapy. I will try and get that on video so everyone can see what we are talking about. :)
Well, I better get us ready to go. Again. Thank you for your kind messages on her page. I so want her to know she hasn't been forgotten.
August 22nd Update:
Hi Everyone. ( go to* for “just Jessica” :)
I took a bit of a break from things after all the craziness of the 5k. Thank you to everyone who attended/participated. It turned out to be such a great day. It was nice to see old faces along with even more new ones. As soon as I can I will be posting the many photos taken. For those of you who couldn’t make it but supported us thank you so much. It was so fun to see Jessica the days surrounding the event literally show she was happier in some way. Her alertness was up. She laughed. Hard to pin point but something was definitely different in her demeanor.
Thank you to the Journey for Jessica team and the Ottaviano family for all their hard work and to all our other volunteers. An event like that is definitely not run by one person and we are blessed to have the people we have in our lives who literally spend hundreds of hours to make it work.
We were able to raise a little over 25k towards Jessica’s treatment and reached thousands in raising awareness for Traumatic Brain Injury. Our goal this year was 100k and we are almost half way there with the pasta dinner and other donations included. We are keeping the faith. We have a really fun new event coming in February. EMERGE TALENT COMPETITION. More info will be coming but we will be doing a talent competition at a large venue with a Grand Prize. We are trying to make it fun and helpful for other people to share their talents while we continue to raise awareness and therapy for Jess. Change has to begin somewhere is my Motto. Even if its just us little people to begin with
That being said I want to let you know where your money is going. The treatment for IBRF for the year left us with a 50k balance due. Which not only includes their protocol, but the vitamins and Neuro Feedback sessions Jessica is now able to receive 5 days a week (which she has shown great improvement in) and the tests they fly out and do every two to three months. In fact after Dr. Defina’s visit he was very optimistic and wants a special test done while Jessica attempts tasks. He was very excited to see the difference in her since we left New Jersey even with the surgery and professional therapy setbacks.
We were able to get the Botox for Jessica so she gets her new leg braces tomorrow! Very happy about that! “ Danielle’s Gift” donated 10k specifically towards the 30k required to pay for our aids 6 nights a week which enables us to sleep and still get Jessica’s splints on and off, her rotated and changed etc. while doing so. We are truly blessed with the aids we have, love and trust so keeping them and giving them enough work to make it possible for them to stay is such a blessing in so many ways.
We created a wish list page on Jessica’s website and almost immediately the IPAD was donated for speech and Occupational therapy we will be doing this year along with others purchasing some of the daily medical items she requires that add up each month.
As you know the state withdrew all therapy for Jessica but because of your donations we were able to enroll Jessica in a Physical Therapy program at West Valley that we will be doing twice a week and soon Don and I will be taking her into a pool for therapy for as long as we can afford to.
Your donations are making a huge difference and we are doing our best to make it stretch.
*Ok so miss Jessica is doing great. She had the best therapy she could get last week. VISITS with friends I know life moves on and how hard it is for people who love her to visit with her, knowing that when they leave they will have to deal with emotions we all try to avoid.
I was so grateful for the great week of visits last week. Her friend Bekka came back from Italy and sat and caught up with her. She talked with her like she normally would. Catching her up on life outside these walls and talking with her as if she was just Jessica.
Then her very loyal and loving friend Chris came and spent the evening with her. Yes, he sacrificed and watched a movie Jessica used to laugh out of embarrassment for loving. (Hanna Montana). He sat through the whole thing with her. It was very cute. I had forgotten that some of those songs make me cry because they remind me of my sweet Jess but it was a really great experience for her.
Chris hadn’t seen Jessica in the walking/standing at the counter therapy so it was really fun to have his input on the yes/no questions. As one of her best friends he knew things that I didn’t. So it not only made it more fun for her it was even more proof that her memory is there. Chris asked her if she liked Jack Black. (I didn’t know that answer for sure) Jessica hit the NO button. I looked at Chris and he shook his head yes. So I thought she got it wrong and shrugged my shoulders like Oh well good try. But Chris smiled back at me and said NO I mean Yes that’s true. She doesn’t like Jack Black. We asked her questions about what teachers they both had and Jessica got every answer right. It was just such a great time. I know she could see Chris’s proud face looking at her. Again, the best therapy in a long time!
In closing I want to share something that’s on my heart. I had a very open and honest conversation with a family member recently and they shared how this has affected them and how they cope and deal with those emotions. One of the things he mentioned is how its hard when people suggest that I should move Jessica into nursing care so “Her family can move on and have a life”. He tells them that I would go to my grave caring for Jessica if that’s what it took. That its not in us to give up. Not judging those who choose differently but that IS us. We trust and have faith that we may not know what our future holds but that we will get through it.
I realize there are many people that have opinions on what they would do and/or what we should do (and have lost friends and family over this) but my answer to that is…what you think you would do doesn’t mean that’s what you would do if you actually had to live it and I could move Jessica to Africa and just because she wasn’t in front of me wouldn’t mean I could “move on”. Leaving her in a facility not knowing how she was being treated. Knowing it would not help her but harm her and mostly….. that she is aware and didn’t cause this nightmare. If she could talk would they think the same? Because that’s coming! Many say if this happens to me I wouldn’t want to burden my family etc. But honestly. If you were aware I think if we're honest with ourselves we all have that in us (call it selfish although not) that we would pray that we wouldn’t be left behind and given up on. We’d be praying just one person wouldn’t give up on us.
I just can’t imagine what the families who have to do that go through mentally. To me that would be much harder than what we do. But that’s me. Again, I say. It’s the hardest thing I could ever imagine for our lives and tears become a part of regular life, but caring for her is not only my job as her Mother. It is what gets me through the day. I am blessed to have her no matter what and am blessed that I get to hug and kiss my daughter every day. Wow. Where did that come from? LOL Sometimes I just feel led to get stuff out there that no one wants to talk about But also I want Jessica’s friends and family to know that if we don’t see you. Its ok. I’m not going to say its not hard or I wish it were different but I know we all are doing the best we can to get through it and I pray for healing for not just Jessica but for us all. I am thankful for those who have the strength and faith to be able to walk with us and love you all either way.
Thank you again for taking the time to keep up on Jessica and for your support.
Thursday, July 5, 2012 at 1:22pm by Lisa Huse (Jessica's Mom)
Hi All,
Sorry but Jessica just got home from being in the hospital all week. I'd be lying if I didn't say I was a little happy it was cold and windy last night. Helps when I don't feel like she is missing out so much. We had hoped to take Jessica out but due to her just getting home from Stanford and the weather we kept her home in bed.
It was a very hard week. I started to update people from there but honestly my mood was not in it. Exhausted and Sad.
We admitted Jessica last Friday morning due to possible bowel obstruction. The hospital was packed so everything took forever and organization was not quite there. They were very compassionate at least and by 3 a.m moved us into a holding room in the ER where they allowed Steve and I to stay with her until we got moved to another room. They contimplated surgery but tried an NGTUBE first. Not fun! It basically is a half inch tube that they run through her nose down her throat and into her stomache to drain her upper GI. NO Sedation or pain meds given. I was horrified but Jess handled it like a champ. The hope was that if her upper GI track got a break the lower would start to function more properly. Jess was not able to eat for over 3 days as we cleared out her system. The Xrays showed she had no major blockage so surgery wasn't necessary. Thank GOD! I actually did pretty good in staying positive and not worrying too much. I really felt like surgery wouldn't be needed and that something good would come out of this again but definitely had to fight to keep myself not feeling horrible for her. She was so tired and we could tell not a happy camper. She would have her eyes shut and resting and everytime a doctor would walk in her eyes would shoot open and get huge as if scared of what they were going to say or do next.
It started out very rough with the nursing care but once her and Don got moved into a private room things got better for the most part. Its amazing to me how disorganized things can be. I literally gave them two printed copies of her med lists and we had 5 conversations yet they still were going off a year old med list and were attempting to give her stimulants at night and Blood pressure medication she no longer takes and leaving out medications that I worried about the withdrwal symptoms if left not given for too long. It was crazy. Luckily we were there to catch it every time. But at least the staff was really good about checking in with us etc.
Once again I am reminded of how necessary it is not to leave her. That its not just us being over protective. They were very nice and accomodating about us being there and thanked us for the help. So that, I really appreciated. Nothing like fighting that stuff on top of everything else.
I am also reminded of how many people don't have that of assistance and how many mistakes can happen and no one would even know. I think Stanford is definitely the place to go for care and overall probably the best around but if they have that much trouble keeping up on things with patients like Jess how bad is it in facilities where most TBI patients are forced to go/live on a regular basis. Makes me sad.
The good news is. Jessica is home and feeling better. Back to work on the 5k. I really want to thank everyone again who donated and/or made it to the dinner. We were able to raise 7k towards our 100k goal for Jessica's therapies and medical costs along with our new mission to raise awareness. Thank you Ottaviano family for one of the best pasta dinners I've tasted let alone at a fundraiser type of event. They worked like crazy for us. Thank you to JFJ team for all the hard work as well. It was a really fun night and Jessica let us know she loved seeing everyone when we did yes/no buttons the next day. I was told during bingo her eyes would light up when her friends slid the numbers on her bingo card. Very cute.
Today I am trying to get in touch with the media about our event. Our response has been a bit lower than I had hoped at this point but I just keep prayin! I know it may get old but please if you could help us spread the word and/or mark it on your calendar we would really appreciate it. We have added so many fun things to it. Awards and prizes for Adult and Child Participants etc. I promise it will be fun!
Lastly, I want to thank a special foundation. We got the official notice from the agency that we no longer can have our aids unless we hire someone ourselves due to the cutbacks. Obviously not quite in our budget. Thankfully someone contacted me from DANIELLE'S GIFT FOUNDATION (www.daniellesgift.org). They have offered to pay for 3k of aid care for us to sleep at night for a couple of months. Amazing timing!!! Danielle's Mom asked what the family could use the most beyond Jessica's medical expenses etc. I very quickly said SLEEP!!! LOL Please visit their page and see what her Mom had done in memory of her daughter. I only hope that some day we can pay it forward. The 5k being just the beginning of getting help for ALL TBI patients and families.
Thank you to all who thought of Jessica on her favorite Holiday. I will read her her messages for sure!!!
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June 22nd @ 4:30 p.m.
Quick update today. We had some concerns with Jessica this week. Of course when I mention that" if things don't clear up by tomorrow" I want to take her to emergency ...they cleared up :) So Miss Jessica will be blessed to see all who can make it to the spaghetti Feed/ bingo night tomorrow night.
We are getting excited for her to see everyone. I know it will be sooooo good for her. Based on her yes/no's in therapy we know she is aware even if she can't show it. We know that she will be able to know whats going on and know that her people are there loving on her and supporting her. Some day she will be able to tell us all about those occasions and how she felt.
Jess continues to be alert and doing well in spite of the issues we are having getting Medi Cal straightened out. Both Anthem and Medi Cal continue to deny coverage of some of her medications that are very very expensive. Some also on back order due to the manufacturer. We also received official notice this week that as of the 27th the State will no longer offer us our Aids at night. They also sent our doctor the denial letter for her coverage that would give her physical, occupational and speech therapy. We are stuck in a program that clearly states they DO NOT COVER TBI. It has been a very heart breaking week for me personally with all this negative but I continue to try and take it one day at a time and trust that all will work out.
Thank you all for your support and helping us get the word out on the Spaghetti Night. We have worked really hard to make it a fun night for everyone. We were blessed with some really great Bingo and Raffle prizes so it will be fun to offer something back to all of you for taking your time out and hanging in there with us. That part really makes me happy. Its hard feeling like we ask so much without being able to give back. One way I am definitely trying to give back is by spreading the word more and more about all that we are going through so maybe just maybe some day other people wont have to. But prizes are good too :)
Every time you click on this page it encourages me. Knowing that thats one more person being made aware.
I ask that you send your thoughts and prayers towards our friend/new brother CHI. As many of our regular readers know Chi was at Meadowlands with Jess and also fights to recover. He has been fighting infection from his bed sore for months now and although finally was strong enough to come home to California was not home long before he needed to go to ICU due to complications. They weren't so sure he was going to make it through this one but Chi is a fighter like Jess. He was taken off the ventilator and doing better the last update I got. They are like family to us. We battle together.
I will update soon. Thank you again for reading and keeping up. We are grateful. Please, if you are free tomorrow night come see us. Introduce yourself to me and Jess! Also don't forget to mark your calendars for July 28th for our 5k we have big surprises in store for that one too :)
Hugs,Lisa
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Request for Assistance: April 25th @ 11:42 a.m.
Hi All, Jessica turns 21 tomorrow and we got our first "gift". NOT!!
The state came out to the house and notified us that because Jess is 21 and making progress she will no longer receive the benefits we have been getting. I have copied and pasted a letter I wrote to a friend who is in the media. She has been a huge support for us and helped us when Jessica was at Valley Medical and they were forcing us to leave her alone. Had it not been for this person and all of you Jessica would haven't maken it this far. Please see the letter below. We will be looking for help in spreading the word. Thank you, Lisa (Jessica's Mom)
Hi!
First I apologize for buggin you. I am desperate.....AGAIN. I am literally putting together a letter for Congresswoman, Governor and Obama. I am also thinking about creating a you tube video. I lost my phone with all my contacts so I don't have the KPIX teams numbers anymore. I know they tried to catch me for an interview awhile back regarding this issue but I didn't get their message in time.
As you may know Jessica is turning 21 tomorrow. Since we got back from her treatment in New Jersey I have been waiting for a social worker to come out to evaluate Jessica so we can get paid as providers again. They say that because of the cut backs is why I am on hold for over an hour each time I call and why it has taken so long to get the social worker to come out. Had we not been able to borrow money from family we would be homeless. Being that that small amount is how I pay the bills.
Anyways....For Jessica' Birthday they informed us that our aids that we get at night so we can sleep will be gone and our monthly income will be cutback. It literally took them less than a week to get a person out here to let us know about the cutbacks and that once we start getting paid again Jessica will no longer have in home support unless it comes out of those funds. Funny how that didn't take three months! Basically Don and I take turns doing 15 hour day shifts three days at a time and in a month they will be 24 hour shifts. Waking up every two hours in the night to position and change her.
I get that the state paying is a bonus but the alternative is so much more expensive for them I don't get it. They are creating families to be forced to send their loved ones to facilities costing way more money and statistically a longer term thing or deadly (guess thats cheaper). It may look good on the budget now but ulimately will be disasterous. How many people will be in this position before they scratch their heads and say OOPS!
WHY HER AGE HAS ANYTHING TO DO WITH THE CARE NEEDED IS BEYOND ME. I guess now that she is 21 she should go get a job? I mean really. Its crazy! I think about the families who don't have two people willing to live in poverty and soon lower. Let alone two people that have been divorced for 13 years and agree to live in the same house in poverty! LOL That always makes getting along easier :)
So many families will have to make that decision to basically let the state stick them in understaffed nursing care facilities where the chance of progess is minimal and more likely they will get an infection and ultimately pass and it will in the end cost everyone more.......I am dumbfounded.
Most families don't have a group of people who meet every other week to come up with ways of raising money. But even that.....can't go to daily living expenses or the state would cut her benefits all together and we would go to jail for taking funds to pay rent. Guess rent would be free for Don and I then :)
Hugs,
Lisa
Please See www.journeyforjessica.com for upcoming 5K race to raise money for Jessica's MEDICAL expenses and treatments.
April 19th @ 10:20 a.m.
***Please see special request below*** Jessica's 21st Birthday is one week away!!
Wow! Time is flying by. I have tried so many times to update this and never get enough time to finish. Sorry!!! Not to mention...I really don't like the facebook changes!!! Urgh.
Jess has been home for about 3 weeks and this house has been very hectic but Jess is still doing great without the shunt. We had some concerns with her blood pressure going up a bit but doing great now. With all the new therapies we took home with us her shedule each day is about a 15 hours of non stop care and therapy. At first Don and I thought we would try 7 day shifts but 15 hours a day for 7 days was just way too much. So we now are going to try 3!! Total exhaustion for three days at a time should be doable :)
Although Jessica is getting home therapy (that donations have paid for THANK GOD!) we still struggle to get out patient therapies. Steve and I interviewed a place yesterday and Steve had a very hard time with it. He said he wanted to drag me out of there after two minutes of conversation. I guess I am getting better at not letting other peoples opinions or negativity affect me.....because that is the norm. So much is dictated by insurance criterias that for TBI patients like Jess just don't work. They told us she didn't warrant therapy ages ago. Had I listened Jessica would not had made the improvements she has made. I don't know hmmmm communication??? That is kind of important I think? LOL Whatever! Thank God we have selected carefully the people that work with Jess. People who also don't believe in giving up.
Again, its like starting all over. She needs to be reevaluated and Medi CAL has to authorize. Her private insurance has let us know that even though Jessica has now met the criteria for therapy they only cover about a weeks worth per year. The cost of Jessica's therapy alone is close to 100k per year. So please be praying for us to get Medi Cal to take a portion of these costs. They are cutting back on medications they will cover. Our IBRF protocols and tests are 50k for the year. I am choosing to stay positive and know that we will do "Whatever It Takes" to keep Jessica's improvements rolling. Dr. Halper will be here in a few weeks to run tests and we will be able to see if the surgeries have impacted anything.
I am posting a picture of her new infra red light therapy so you can also see what she is getting. Tomorrow she has her first session of Neuro Feedback that she got in New Jersey. We will do this 5 times a week from home now. We are doing it via the internet with our IBRF team. Jessica will have electrodes on her head and we will be giving her different excercises to watch on the computer. It will read her levels of coherency etc Some are problem solving type of games. To give you an example of what we will do tomorrow. Jessica can watch one of her favorite movies. When she is paying attention either audibly or visually the movie will play. When she isn't it will stop playing. This gives her feedback and reward. Training her brain to focus and connect. It will send a report of which areas of her brain are processing the information and let us know her level of improvement over time.
Physically, we have been strapping wood boards to the back of her legs so we can get her up and walking around like we did in New Jersey. Her upper body strenghth has really improved. Due to her improvements Jessica's splints no longer fit her properly so we are looking to purchase new ones in the near future. We also have been feeding her orally daily. Don has a regular routine of taking her down the road to Togos and Frozen yogurt. Super cute their little regular date :) Its funny to see her come home regularly with an orange mouth :)
I also have found that she is really liking the Cran Rasberry juice although she makes a sour face when we first get going. She clearly knows the difference in flavors! Sorry Jess :) Sour can be therapy too!
Equipment good news: Thanks to Trent and his friends selling bracelets at Valley Jessica's therapy mat is here!!! Pops drove all the way to Calistoga to put it in and with the help of "Oinkle Leonard" Jessica can now get some serious work done here at home. I am continuously reminded of how blessed we are for the people in our lives.
I was told that our Georgio's dinner raised $2,000 towards Jessica's IBRF treatment. Thank you!!! I took Jessica to the dentist and although quite the ordeal Jessica's teeth are still in great shape! Thank you donors for that appointment as well! No anesthia was needed this time! Whoop Whoop! Progress!
Trudy, Steve and I have turned our house into the Journey for Jessica headquarters. We are currently working on getting sponsors for the upcoming 5k in July. The JFJ team decided that we want to have events that people not only are doing us a favor by attending but things that people really really want to go to and participate in! Although it takes a lot more paperwork and permits etc. We are really excited. My hope is that some day when Jess is at a place where the funding is not needed we can help other families like us who have nothing left to get the best treatments possible for their loved ones and not give up hope due to lack of funding.
Lastly, I thought Jessica could use some spiritual therapy :) Jessica used to love Bible Studies with her friends. So I started a womens Bible study on Monday nights here at the house that Jessica sits in on each week. She may not be able to participate much but hearing can do wonders.
Journey for Jessica also has a new line of 10.3.10 nylon shopping bags (since here in San Jose all must switch to reuseable bags). Pam ordered our new mugs that were a huge hit a year ago. I am also excited about the new shirts! Just wait until you see them :) Feel free to go to Jessica's site or email me if your intereted in purchasing. As you can see we are working hard to get Jessica her therapy. I told Jess when she is better she will have a Foundation to run if she wishes. She will get to do what she had planned to do when she graduated college. Which was helping children with learning disabilities. A bit of a twist in the severity but definitely on the same path as what she had hoped to accomplish. Makes me cry that my sweet Jess had to go through this to get there ut I will make sure its ready for her when she is ready. Ok need to switch gears. Doesn't take me much to get myself in a sad place.
*****Now I get to Jessica's Birthday. Jessica will be turning 21 on April 26th. We don't have anything big planned but I was hoping if all of you who have your 10-3-10 shirts or any of our event shirts you could wear them on her Birthday? *****
Again, apologize for length of update. Hope you hung in there with me.
Don't forget your 10-3-10's this week especially!
Happy Birthday week my sweet Jess. I know this wasn't what we ever wanted for your 21st Bday but you are here and we are blessed to have you!!! Your day will come!
April 19th @ 10:20 a.m.
***Please see special request below*** Jessica's 21st Birthday is one week away!!
Wow! Time is flying by. I have tried so many times to update this and never get enough time to finish. Sorry!!! Not to mention...I really don't like the facebook changes!!! Urgh.
Jess has been home for about 3 weeks and this house has been very hectic but Jess is still doing great without the shunt. We had some concerns with her blood pressure going up a bit but doing great now. With all the new therapies we took home with us her shedule each day is about a 15 hours of non stop care and therapy. At first Don and I thought we would try 7 day shifts but 15 hours a day for 7 days was just way too much. So we now are going to try 3!! Total exhaustion for three days at a time should be doable :)
Although Jessica is getting home therapy (that donations have paid for THANK GOD!) we still struggle to get out patient therapies. Steve and I interviewed a place yesterday and Steve had a very hard time with it. He said he wanted to drag me out of there after two minutes of conversation. I guess I am getting better at not letting other peoples opinions or negativity affect me.....because that is the norm. So much is dictated by insurance criterias that for TBI patients like Jess just don't work. They told us she didn't warrant therapy ages ago. Had I listened Jessica would not had made the improvements she has made. I don't know hmmmm communication??? That is kind of important I think? LOL Whatever! Thank God we have selected carefully the people that work with Jess. People who also don't believe in giving up.
Again, its like starting all over. She needs to be reevaluated and Medi CAL has to authorize. Her private insurance has let us know that even though Jessica has now met the criteria for therapy they only cover about a weeks worth per year. The cost of Jessica's therapy alone is close to 100k per year. So please be praying for us to get Medi Cal to take a portion of these costs. They are cutting back on medications they will cover. Our IBRF protocols and tests are 50k for the year. I am choosing to stay positive and know that we will do "Whatever It Takes" to keep Jessica's improvements rolling. Dr. Halper will be here in a few weeks to run tests and we will be able to see if the surgeries have impacted anything.
I am posting a picture of her new infra red light therapy so you can also see what she is getting. Tomorrow she has her first session of Neuro Feedback that she got in New Jersey. We will do this 5 times a week from home now. We are doing it via the internet with our IBRF team. Jessica will have electrodes on her head and we will be giving her different excercises to watch on the computer. It will read her levels of coherency etc Some are problem solving type of games. To give you an example of what we will do tomorrow. Jessica can watch one of her favorite movies. When she is paying attention either audibly or visually the movie will play. When she isn't it will stop playing. This gives her feedback and reward. Training her brain to focus and connect. It will send a report of which areas of her brain are processing the information and let us know her level of improvement over time.
Physically, we have been strapping wood boards to the back of her legs so we can get her up and walking around like we did in New Jersey. Her upper body strenghth has really improved. Due to her improvements Jessica's splints no longer fit her properly so we are looking to purchase new ones in the near future. We also have been feeding her orally daily. Don has a regular routine of taking her down the road to Togos and Frozen yogurt. Super cute their little regular date :) Its funny to see her come home regularly with an orange mouth :)
I also have found that she is really liking the Cran Rasberry juice although she makes a sour face when we first get going. She clearly knows the difference in flavors! Sorry Jess :) Sour can be therapy too!
Equipment good news: Thanks to Trent and his friends selling bracelets at Valley Jessica's therapy mat is here!!! Pops drove all the way to Calistoga to put it in and with the help of "Oinkle Leonard" Jessica can now get some serious work done here at home. I am continuously reminded of how blessed we are for the people in our lives.
I was told that our Georgio's dinner raised $2,000 towards Jessica's IBRF treatment. Thank you!!! I took Jessica to the dentist and although quite the ordeal Jessica's teeth are still in great shape! Thank you donors for that appointment as well! No anesthia was needed this time! Whoop Whoop! Progress!
Trudy, Steve and I have turned our house into the Journey for Jessica headquarters. We are currently working on getting sponsors for the upcoming 5k in July. The JFJ team decided that we want to have events that people not only are doing us a favor by attending but things that people really really want to go to and participate in! Although it takes a lot more paperwork and permits etc. We are really excited. My hope is that some day when Jess is at a place where the funding is not needed we can help other families like us who have nothing left to get the best treatments possible for their loved ones and not give up hope due to lack of funding.
Lastly, I thought Jessica could use some spiritual therapy :) Jessica used to love Bible Studies with her friends. So I started a womens Bible study on Monday nights here at the house that Jessica sits in on each week. She may not be able to participate much but hearing can do wonders.
Journey for Jessica also has a new line of 10.3.10 nylon shopping bags (since here in San Jose all must switch to reuseable bags). Pam ordered our new mugs that were a huge hit a year ago. I am also excited about the new shirts! Just wait until you see them :) Feel free to go to Jessica's site or email me if your intereted in purchasing. As you can see we are working hard to get Jessica her therapy. I told Jess when she is better she will have a Foundation to run if she wishes. She will get to do what she had planned to do when she graduated college. Which was helping children with learning disabilities. A bit of a twist in the severity but definitely on the same path as what she had hoped to accomplish. Makes me cry that my sweet Jess had to go through this to get there ut I will make sure its ready for her when she is ready. Ok need to switch gears. Doesn't take me much to get myself in a sad place.
*****Now I get to Jessica's Birthday. Jessica will be turning 21 on April 26th. We don't have anything big planned but I was hoping if all of you who have your 10-3-10 shirts or any of our event shirts you could wear them on her Birthday? *****
Again, apologize for length of update. Hope you hung in there with me.
Don't forget your 10-3-10's this week especially!
Happy Birthday week my sweet Jess. I know this wasn't what we ever wanted for your 21st Bday but you are here and we are blessed to have you!!! Your day will come!
March 26th @ 9 a.m.
First things first. Jessica is home and doing great! Last Tuesday at around 10 a.m. they said that her blood count showed no infection and we could take her home. Jessica was able to come home and celebrate her brother and Dad's Birthdays! She literally was home 30 minutes and I had her dressed with her Uggs and all and we wheeled her down the street to my sister Nicole's house to celebrate with the entire family. Thankfully we kept the party plans hoping this would be the case. Don kept telling Jess she was his best Birthday present!
Funny they talked to us about how comfortable we were in taking her home ourselves and we not only were fine taking her home we were taking her to a party! She was a bit tired but as usual we treat Jessica in the way we think she would prefer. Get out of that place and be a part of life again! Jessica has waited a long time to be home. Even though she had to endure two surgeries and fight infections.. our prayers were answered. Jessica is home and SHUNT FREE and doing great!!!
I also had been taking a big chance by not cancelling a trip I had planned for Trent and I. Trent's 16th Birthday is this week and I had planned to take him to the NCAA semi finals in Phoenix. I struggled at times because I definitely didn't want to let him down but knew if Jessica wasn't better we would have to cancel. I decided to keep the faith and keep on believing. I chose to take a step in faith and just believe all would be fine...and didn't cancel the trip or sell our tickets knowing my entire savings would have been lost if I waited too long. Thanks to those frequent flyer miles from all of my New Jersey trips, Trent and I were able to spend 4 days together and it was all about TRENT.
It was so fun. It made it so much easier that every time I called to check in on Jessica I could hear the excitement in Don's voice. "Jessica looks amazing". He kept saying over and over. She hadn't been sleepy at all. She has been holding her head up and looking around like never before. Don would put us on speaker with her and she would grab the phone. We had our team back. All of our aids who waited for Jessica by not taking other patients are back with us and we can sleep at night knowing she is with her " adopted sisters from Ethiopia :)." Jessica also had her first appointment at home with Anita who is our Occupational Therapist. Don said it was so fun to see Anita almost in tears seeing the changes in Jessica since she last had her back in May.
I want to thank Georgio's Restaurant and all of you for coming out last Monday night. We had a great turn out.(I will be posting pics soon!)
I WANT YOU TO KNOW THAT WITHOUT ALL OF YOU WHO CONTINUE TO COME OUT AND SUPPORT WE WOULD NOT BE ABLE TO GET JESSICA THESE THERAPIES. I CAN'T TELL YOU ENOUGH HOW GRATEFUL WE ARE. YOU ARE ALL A HUGE PART OF HELPING US GET OUR JESSICA BACK! YOU MAKE ME CRY BUT THANK YOU
March 12th @ 4:55 Hospital. They have been really great in working with us on troubleshooting the shunt. She has had the shunt out for quite some time with an external drain so we can measure the spinal fluid pressure would do if not regulated by the shunt. Normal release of fluid is about 18 cc per hour and it seems that she is draining at a normal level. They wanted to increase the level to see if it would affect the size of her ventricles. The change has been slight thus far. It seems that they may be enlarged from the initial injury but not due to current pressure. What does this all mean? Well, we have clamped off the drain now and if she continues to look good and be alert we will go home in the next few days shunt free. The bonus to this is that we don't have to worry about further issues with worrying that its not working properly or that it could get infected. I will let you all know when I know more. Our hopes is that Jessica will be out and feeling up for the Fundraising dinner at Georgio's on Monday night (Info on page and website). J
Jessica looks good and both eyes have been open and very bright. I started a new game with her yesterday. I put three cards in front of her and then ask her to locate a certain one. She seemed to be totally on it. I say seems, because often when lying in bed she will look like she is aiming for one and hit another one. But thankfully I get a second set of eyes from visitors that confirm I am seeing what I think I am seeing. :)
Thank you for all of you who have stopped by to visit. I know it brightens her day. I also thank you for the texts. I feel bad that I don't get back to all of them but honestly those who know me if I am struggling at all, I sleep. Then when I wake up I struggle to accomplish all that has piled up. So please know I appreciate them and love getting them.
Will update soon when we have a move home date. Thanks again and hope to see you at Georgio's :)
March 2nd @ 11:30 a.m.
Quick update. Jessica did well after surgery and was very alert all day yesterday showing very little discomfort. Don said she seems a bit sleepy today thus far but she started out slow yesterday as well then finished big. Being able to at least get some water by mouth. They just took her down for a CT to see how the ventricles of her brain are reacting. We should learn more later today. She is scheduled to have the new shunt put in on Wednesday. Thank you to all our friends who have stopped by and sent texts of support these past few days. I showed all to her. Will keep you posted as we learn more. Please keep your thoughts and prayers coming.
I noticed our page hit 3500 on facebook today. Not sure how many people actually still log on but thank you for all of you who do and our visitors here on JFJ. It means a lot knowing we have you out there.
February 28th @ 3:50 p.m. pst
Hi Everyone. Just a quick update. We are still at Stanford Hospital and unfortunately they have found bacteria in Jessica's shunt. Thankfully no infection but if we don't remove it, the fear is that it soon would follow. So... at approximately 10 a.m. tomorrow Jessica will have surgery to remove the shunt in the left side of her head and then have an external drain for one week (which drains the excess spinal fluid that surrounds the brain). Then next week they will replace the shunt but placing it on the right side. As you can imagine we are doing our best to stay positive and trust that all will be o.k. Another surgery was definitely not what we had hoped for...let alone two. But I feel that this may be a blessing in disguise if the current shunt wasn't doing its job all this time as the Doctor in New Jersey suspected.
Jessica seems to be aware of whats coming. Don said when he explained things to her she had a tear run down her face. I gave her a pep talk yesterday and again today reminding her of our new friend Kim who stopped by Meadowlands Hospital while we were there. Kim suffered a TBI many years ago and shared her struggles and victories. She had 17 surgeries. Shunt replacement being one of them. I reminded Jess of how Kim said it made things so much better when the proper adjustments were made etc. Obviously they went well because she was able to drive and visit us. I am very grateful I had that story to remind her of and that we were lucky enough to have that conversation with Kim and her parents just a week or so before leaving New Jersey. I continue to pray for only trust and positive thoughts to go through our minds so extra prayers in that area would be appreciated. But mostly I just ask that you send your prayers Jessica's way tonight and tomorrow at 10 a.m.. May she have a smooth procedure and a quick recovery. Thank you to all who have been keeping up and sending your love and prayers. They are greatly appreciated.
10-3-10
February 21st @ 4:05 p.m. pst
Thank you everyone for your continued prayers. I just wanted to fill everyone in. Jessica and Don arrived at SFO after a very long flight that was delayed and the two of them ended up on a flight for 8 hours. Jess looked very tired and out of sorts but we thought it was from the flight. She literally was in her home for about 3 hours when I found a tube coming out of her that clearly didn't belong. Her heart rate and temperature were fine so I decided to let her rest and wait until morning to follow up. When I called Dr. Fellus he told me that he felt the shunt tube had made its way through the colon some how and that this was an emergency and to take her in immediately. I asked if we had time to drive her ourselves and could we drive to Stanford 45 minutes away to avoid taking her to Valley Med. I couldn't imagine taking her there! I know the doctors are good there but the regular care is just plain scary. It would have been way too many flash backs for us.
Dr. Fellus said based on her vitals he felt it was fine. So we stopped her feeding immediately and took her in her pjs to the emergency room at Stanford. They were completely baffled. We did x-rays and could see that there had been a kink in the tube but could not see where it had traveled. I assured them I knew exactly where it traveled. But it had worked its way back up by the time we got there. Once we had them check her again the attending doctor found what I was talking about. Due to the bacteria that is in the colon having a tube run from that area to the brain is very dangerous. They said it had to had been like that for some time in order for it to rub a hole through the colon. They were shocked that she had no signs of infection and was not much more sick. They informed us that Jessica needed immediate surgery and depending on how they found the colon they may have to remove a portion. They also would have to remove the tubing from that area and then take the tubing from the shunt in her head and have it drain externally but said it was a possibility the shunt would need to be removed. As I retained all the information shockingly I just kept thinking the timing is just too weird. What are the chances that she would make it home before we located this? That me being half asleep found this that night before she got sick and then it disappeared again? Had it not shown me that night we probably wouldn't have discovered it until Jessica was very sick, making surgery much more difficult with an infection going on.
That had this happened in New Jersey it would have been "out of network" for our insurance and I am guessing a fortune. Not to mention... Don and I had questioned this shunt when we were in New Jersey but due to all the delays and issues getting clear information there we decided to look into it when we got home. It was a tough call to make but after speaking with the doctors who we trust (Dr. Fellus and Dr. Halper) the most they felt that Jessica was doing so well we should not take any risks by making big changes if they weren't necessarily needed. (Last time when we had to put the shunt in, Jessica had gone from nodding yes to no communication)
They felt it was worth the risk if Jessica slowed in progress or showed signs that it wasn't functioning properly, then we should go in and be more aggressive. Although we were confident in the nurses taking great care of Jess after a procedure we didn't feel like Meadowlands had a surgeon who was as specialized in this area as the doctors at home. So when all this came down I thought o.k. maybe God has taken this decision from us and it was something that needed to be done and done at home. He sure didn't waste any time. Not to mention leave it to Jess to get surgery on a Sunday :)
From the time we checked in at Stanford it was like we were getting all these signs that all was going to be fine. One of the emergency doctors recognized us from Valley Med and said "Hey isn't this Jessica, Dr. Tally's personal patient?"
I later lightly joked it sure would be nice to get the same unit as last time where my favorite Stanford Nurse Jay was at. He had gone to Holy Family. Guess who is waiting for us when we get there? Jay :) He said I know you prefer to stay with her so I am working out the private room for your night before surgery. Then the next nurse came on duty and she introduced herself and said "My daughter has your shirt Jessica". Her daughter goes to Valley Christian. :) I just was laughing. I kept saying see....He's got this!!!
I truly was at peace when Jess was in surgery. I think people thought I was in denial or something but I just felt too many things happened in strange timing that it had to be right. When the surgeon came out he let us know that they had finished the first portion of the surgery and she did great. The shunt didn't have to be removed at this time. Then the general surgeon came out and said surprisingly Jessica's colon looked completely fine except for that small hole she had to stitch. It was the best case scenario for both.
Unfortunately later in the day they got the results from the fluid that had been removed and it shows that the tubing had bacteria on it. They are waiting to see once the culture grows fully, but they now believe that removing all hardware in her head is necessary. If that is the case, Jessica will undergo surgery in days to come to replace the shunt and move it to the other side of her head. This makes me very sad. Having her head shaved all over again and another scar just breaks my heart. Not to mention another procedure for our girl. Jess remains at Stanford now and although doing well she has the tube from her shunt draining externally into a container. It is life threatening if the fluid were to drain too quickly so we need to keep her head at a certain level and keep track of the amount of fluid being drained. She is in a step down from ICU so we are unable to stay with her. A first for us and not easy.
The first few days at Stanford was very frustrating. They misplaced her med list numerous times and I was concerned that pulling her off of 30 medications all at once for more than a day could not be good. So the on call doctor agreed to start introducing them again. Tough part is that they said no food for a day or so but Jessica throws up her meds if she doesn't get any food.
I spent the first night with Jess prior to surgery but at this ICU type of room again, you can't stay with her. Thank God they allowed me to stay late enough for her 8 p.m. meds. I had them show me what ones he prescribed and the nurse was about to administer one of her "speedy" type of meds, which would have kept her up all night again. Jessica was clearly in a lot of pain and her heart rate was getting quite high. this would have only made matters worse.
Not the right time to tell Don he couldn't be in the room. Mistakes were being made and the nursing supervisor didn't have a whole lot of sympathy or remorse. Poor Don was a mess. He slept out in the waiting room and was able to check the room every 30 minutes or so to see how she was doing but knew he would not be able to catch any errors had they came up again. Exhaustion definitely didn't help.
Yesterday morning we switched and I was able to sit down with one of the nurses and go over all her medications and what time they should be given. Jessica continued to show signs of pain through out the day so the evening nurse and I came up with a pain med schedule. Finally by 8 p.m. Jessica seemed comfortable. But again... the system showed to give her a medication at 8 p.m. that would have kept her up all night. Thankfully we caught it and I stood there with the nurse while she changed things in the system. They also allowed me to choose the settings for the alarms on her heart monitor so they will go off if she is in pain verses it going off with an emergency. I now am confident that all is under control. They have been very good and kind to Jess.
Jessica has done well today but we still have some issues we are trying to work out. Her stomach is very distended.
They have been very good ever since and coming in and discussing things pretty regularly. Jessica has a nurse at her bedside and is monitoring the fluid regularly. Although it was very hard, I felt comfortable going home to sleep last night. Of course .....After I left and then chose to turn my car around so I could meet the night nurse and go over every detail. Thankfully the nurses have been very nice about understanding our concerns and working with us.
We fully realize that they are not used to families actually knowing what they are talking about. But we have been her nurses for 2 1/2 years, so us knowing what she is feeling without her being able to talk is something they just can't do. We seem to be working the kinks out and all working together.
By chance I was reading Jessica's favorite book in the Bible (Philippians) to her and was reading a verse that really had no special meaning to Jessica or I but her nurse turned to me and said... Wow! That is my favorite verse. Again, out of all the verses I could have read at any time. We picked the one that meant something to someone listening who I didn't even realize was listening. Guess its not all about us.
Anyways, tomorrow we should get word on when or if we will be removing the shunt. It sounds like they will be replacing it. I am trying to stay positive and trust God has this all worked out. If the shunt wasn't working properly this could actually help Jessica's progress. Already we see that Jessica's left eye is no longer half closed most of the day. In fact it has consistently working with her right eye more since the surgery. She is understandably not as connected with us right now but she looks good.
Please continue to pray for Jess and for wisdom and guidance to us and all the doctors and nurses. I continue to believe..... "He's Got This" and we have to trust it.
Not exactly the home coming we were hoping for but do things every turn out the way you picture them? All I keep hearing in my head is to TRUST. May we all keep hearing and believing this!
10-3-10
February 9th @ 5:20 p.m.
I know I know....Slow on the update :) Sorry but it has been so busy here. I flew in just two days before the fundraiser and haven't stopped with details since.
A special thanks to Nicole Avila and John Wineglass for flying all the way out here to sing Jessica's song. (Thank you to Nicole's cousin Issac for playing too!)
Although we had a lot less people that we had hoped to see come, and had some hiccups with the event (some day I will write a book and you couldn't even make this stuff up) it was one of those times that you are shocked, hurt or disappointed but then you get over it within minutes by the love and support that was in the room that night. The people who couldn't come but sent support or sent letters etc. were truly amazing and we in the end...we all had a blast. We made many new friends. I had a man come up to me that ran over during his break to make a donation. Those types of things that just really make you appreciate people.
Jessica stayed for almost the whole thing. She even had a new outfit that was given to her by a new friend. So cute! I could go on and on. Our Jersey Mamas were there (of course) Just a fun fun night. Ok I will stop now ...getting teary!
The next day in therapy I asked Jess if she had fun at her party and she SLAMMED the yes button :)
Well , the night was bitter sweet. It was great to be able to thank everyone who has been so great to us and share in Jessica's recovery but it also turned out to be our Farewell to New Jersey. Didn't know it fully at the time but by Monday reality was there and I began the preparation for our move home.
I definitely had to talk to our friends in California for me to start being excited. There is a lot of changes going on here at the hospital. Today two more of her therapies were no longer available so reality is more evident. With the IBRF split from Meadowlands everything is and will be, very different from the original plan that we had when we arrived here, so it is giving us at peace with things. It is time. I have had more time to prepare for this possibility for months but was just trusting God's timing. I just needed to keep focus on the positive. Easier said than done but I am working at it.
Its hard to imagine not sharing our day with all our friends here but I know its just another step in Jessica's Journey to recovery. Of course we had hoped for Jessica to walk off the plane but we constantly are reminded that things don't always happen on our time table. Lord, do I know this! I force myself to look at the good and that we continue to head in the right direction, and have been blessed with so many people along this Journey and most of all Jess is doing things all the doctors at home said would never happen. Haven't forgotten you... VMC were still coming back!!...but not as patients!!!
Jessica continues to do great. Although not answering yes and no all day long, we definitely are learning more of what she knows. She tends to do best when she is standing. Maybe it is what makes her most alert? Either way based on her answers she remembers most of her friends and family. She even remembered her Kindergarten teacher Mrs. Ferrera. (Feel free to tell her!) Just now I asked her if she wanted to watch TV and she said no. I then asked if she wanted to listen to music. She motioned No. Then I said do you want it quiet and me to just shut the door? She said yes. Funny....I almost never think she wants to be left alone. I must drive her batty! I don't dare to ask her that though :)
In your prayers tonight please pray for our friends who feel like family..l. Chi, Soria,Tony, Janice, Alicia and Skyler... And Grandpa Fred.
Special prayers for Suri's family and friends. Sweet Suri passed away almost two weeks ago. She will never ever be forgotten. We were blessed to have her as our friend and neighbor here.
January 27th @ 11:30 p.m. pst
Lots of big updates this time!!! Please excuse my typos etc. I have about a hundred things on my to do list today to prepare for the upcoming event and our possible move home.
I have delayed in posting again hoping I would have more answers but I will post with what I do have. I didn’t want to wait to share Jessica’s progress in the last two weeks. So this time I am going to start with that. The GOOD stuff first! Jessica has clearly made a leap in her healing. I often wait until she is doing something consistently before I share it and get people excited. But I can safely update that Jessica is communicating! We have waited over two years to have Jessica communicate in some way and that time has arrived. It started slowly as you know and my last visit there we were starting to see some changes. I went over her QEEG reports with Dr. Halper and they match up with what we are seeing ourselves. Jessica’s coherence has improved by approximately 30% . Her emerging state has progressed. Her speed in processing information has also improved.
My last visit there I had started asking Jessica to raise her right leg for yes and lower it for no. She was getting 95% of the questions correct. I asked her if she lived in Mexico. She responded no. I asked her if she lived in California she responded yes. I asked her if her brother’s name was Scott and she responded no. I asked her if her brother’s name is Trent and she responded Yes. We mix up the questions so we know that there is no chance of pattern answers. I left New Jersey encouraged and excited yet still cautious wanting to be sure even though she had done it for three to four days in a row. Answering therapists correctly approximately 95% correct.
Don and I discussed having him go deeper with her. He called me the other morning with complete shock and excitement in his voice. He shared that he and the therapists using the yes/no buttons while she was (standing tends to make her more alert) were getting amazing results and answers from Jess. Yes, even the therapists are confirming that we are not crazy. Jessica is responding.
Although Jessica has trouble getting her hand to hit each button immediately she does do it and at other times we accept the answer by her leaning her body and reaching for the button. We don’t want her to get frustrated by the trouble of getting her body to do things that she doesn’t get out what she is trying to communicate.
Jessica is successfully answering almost all questions and almost immediately. Don also asked informative questions . He asked her if she can see the TV when its on. She indicated yes. He asked her if she was in any kind of pain. She indicated no. He asked her if she often gets headaches she indicated no. He asked her if she knew that she was in a car accident and that is why she is there. She indicated yes. He asked her if she liked doing these types of exercises and she indicated Yes.
Knowing that we are on the verge of getting a better idea of what she knows and remembers is overwhelming. Exciting and scary at the same time. I want to know that she is ok and feeling encouraged and hopeful. But once again I am trusting that God is taking care of that as well.
We still are in the holding pattern with the shunt. Due to Jessica’s improvement when doing a trial adjustment the consideration to change or remove is still there. Unfortunately Valley Med has misplaced or can’t find her last MRI for comparisons. Driving down there to see what I can do to assist them in finding things
Our fundraiser is on the 2nd but the response has not been good. That is a whole other story. But if I go based on the current numbers we are looking at the need to bring Jessica home next month. As soon as I know more I will share with all of you. Either way I am very confident that Jessica will continue in her progress and this is going to be a very good year for our Jess.
In the mean time please pray for Jessica. She is currently fighting the flu and has been vomiting the last few days. They had to put a breathing tube in to assist her since she is struggling with the coughing etc. that has come a long with it. I spoke with Don this morning and Jessica remains bright eyed and looking well even though she is dealing with all of that. Don unfortunately didn't sound so good. As of last night....they are fighting the bug together. So please pray that the both of them feel better ASAP :)
Also to our New Jersey friends. Thank you for all your help in trying to get the word out on Feb. 2nd's fundraiser. If anyone needs more info or you haven't purchased your tickets yet, please go to www.journeyforjessica.com
Hugs,
Lisa
January 10th @ 11 a.m. EST
I apologize for the lengthy delay in updating. I also apologize for the size of this update
I have been trying to process and recover from the roller coaster of emotions, along with waiting for the most information I could get before sharing with all of you. There have been ongoing concerns about changes that have gone on here in New Jersey and how it would affect Jessica's plan of care. As you know this was a new department for Meadowlands and so with that, came some growing pains. So although we thought things were ready for us, many of the things have had some unexpected glitches, while we waited for all of the machines to get up and running and the licensing to go through. We were still excited about the therapy she was getting, which is not available elsewhere. Not to mention the hopes we had for this new program for families just like us. Unfortunately, instead of a new beginning, we were faced with the news that Dr. Defina and the hospital decided to part ways. We weren't sure what this would mean for us. The hospital maintains the Infrared, Meg, and the TMS machines which were rare and the main reason for us traveling here.
Obviously upset and disappointed and concerned about the thousand dollars a day, we were spending daily to be here I met with Dr. Defina and the owners of the hospital numerous times. Meadowlands offered us to stay for 2 more months on them and since we are out of the money that definitely was needed in order to receive what we could under Dr. Fellus, who has been treating Jessica while we were here anyways. Unfortunately, due to Jessica's shunt, neither the TMS or the MEG is possible at this time. We did the Meg machine twice, but due to the noise from the shunt and Jessica's movements, most of the data is unreadable. The TMS machine is a magnetic stimulation therapy that they are concerned that due to the strength of the magnet it will move her shunt. We are currently speaking with an outside Neurosurgeon who specializes in shunt placement and the manufacturer of Jessica's shunt to see if this is the case. Crazy as it is, we are even having issues getting her MRI results. If its not one thing its another. We are trying to look into several factors. A) Is the shunt working properly? B) Is it still necessary? Since when it was first placed, the neurosurgeon said that once he got in there, he wasn't convinced that she had an excessive amount of fluid. Best case scenario is obviously getting TMS with the shunt if risk free. But even then depending on our fundraiser don’t know if we will have the money to stay while we get this portion of what we thought sounded the most promising of the protocol. The contracted daily rate of the hospital is almost twice as much now that Dr. Defina is gone.
Obviously, this all has been quite the disappointment and quite different from what we had hoped for, but isn't that how life seems to go? On the positive side, we have been getting more therapy in the last 7 months than we would have at home, and honestly I couldn’t be happier with the people we have encountered and shared our time with here. It has been like a family here. The staff and families here truly care about Jessica and it is hard to imagine our days without them. We are not sure about what the next few months will look like, or when we plan to go home, but a lot depends on the shunt outcome and the upcoming fundraiser the hospital is hosting for us. Then there is the question of if we will even have access to TMS machine even if we get the shunt issues taken care of.
I am working with the PR people here at Meadowlands and they have been really great about helping us get things together for a great event. Nicole from Gateway and John Wineglass have volunteered to fly out to New Jersey to come sing the song I wrote for Jessica and I have some other entertainment I have put together I am really excited about. Now just praying people come. But like any of our fundraisers, I always feel blessed if only 10 people show up. The love for Jessica is just inspiring. Funny how people just connect with her without her saying a word. She has the way about her.
We all know this is not how we had hoped to take Jessica home. And honestly I worried about her friends and our supporters being discouraged with this news. I want everyone to know that we are still excited about her progress and that it was not a waste. Jessica has made some clear improvements and we know ultimately who is in control of all of this.
We had hoped that we would at least have the opportunity to get all chances for Jess prior to our departure and maybe we will. I am just not going to freak out at this time. I refuse to! Every time I start to, I just stay focused and trust things seem to work themselves out. (For I know the plans I have you declares the Lord. Plans to prosper and not harm. Plans to give you a hope and a future) I just keep repeating that in my head every time I get discouraged.
I am not looking forward to all of the red tape I have to redo when I get home either. Getting signed back up with the state, finding doctors who are willing to treat Jess, getting on the list for therapies etc. and praying it will be covered and all is still available. We received a letter stating that on Jessica's 21st Birthday (which is in April) that our home support will be cut but they would give us a list of nursing homes to send her. (which also cut patients off from physical therapies etc.) Obviously that isn't even a thought for us, since there is no better care than at home. No way we would leave Jessica. So we just have to regroup. I trust that all will work out fine. I am really learning to just trust that God still has it all under control and this is just another part of the journey. Had you asked me to trust all of this years ago I would have thought you were crazy. It’s amazing how instead of losing my faith, it has increased. That has to be a God thing because it sure isn't me!! LOL
I am just praying that Jessica can continue to get the therapy here for as long as it makes sense and is available for her. We invested everything to be here and I am not sad that we did, I was just hoping that we would get all the treatments we looked forward to. Don and I are juggling ideas around to figure out where and how we can get the best for Jess here on out. Whether that’s here in New Jersey or doing it from home but we know at home it will definitely be limited to what we had gotten in the past.
Ok want to finish up with all the positives. Although most areas have been out of one of Jessica’s meds I called every surrounding pharmacy. Originally they all told me they were out. By mistake I called one locally again the next day and by chance they had just enough for our order available. Since getting it, Jessica has been bright eyed and totally on top of her game. She is so cute. Just tonight I was sitting talking with Chi’s Mom Jeanne and his friend Juan came in the room and said Hi Jess. Very naturally and immediately she waved at him like it was nothing. I think she caught him off guard.
Steve and I have been doing"cell phone therapy." We put the cell phone all over the bed and have her find it. She was four for four today.
Normally we will point to an object and ask her to touch it. But lately we ask her to find the square or find the star and she will pick it out of a group of puzzle pieces. Knowing the difference is huge. We know she is really thinking and using her memory as well. Today I said. Ok you pick. Each time she chooses the heart. I received the results from her latest QEEG and I will be posting the photos on here this week so you can see for yourselves the difference. It shows that although Jessica shows little improvement in some areas she shows great improvement in Clarity.
Chris, you will like this one Steve was showing Jessica pictures on the computer and he asked me “who is this guy?” Every time his picture comes up she seems to get more awake and starts to hit the computer as if she wants to keep going back to his picture. I said, "I bet its Chris" and of course it was :)
Then Janice’s Mom (another patient) brought us some homemade Ox tail soup for Jess to try. Saying it had lots of vitamins etc. So while I was feeding it to Jessica she started making MMMMM sounds. I now call it Kay’s magic soup. Jessica continues to look as if she wants to talk so badly. She definitely makes more sounds when something is bugging her. I always know when she has had enough of something.
We all know that Jessica loves the Bachelor. Well last night she was so much more awake between 8 and 10:00 than normal. Its so funny, I swear she knows its back on!
Well, you definitely got my novel again. I’m sorry all the information came in one post but it really took me awhile to get all of these answers and process them before I could even fathom trying to explain it to other people.
Please hang in there with me during these delays and I ask that you pray for Jess. Pray for our clarity and guidance as we get through this month.
Hugs,
Lisa Huse
November 8th @ 11 a.m. (pst)
First things first.... Thank you so much to the Ottaviano famiy and volunteers/sponsors for doing the spaghetti dinner fundraiser. The amount raised was double of what I thought possible. There goes Pops again... he never stops! Thank you all so much for attending!
Some of you who attended the first seating were able to "Skype" with us. But what you didn't know is that hours before that I was freaking out a bit. I had just found out that our funds for keeping Jessica in New Jersey are very very low. I also found out that we will have continued delays on some of the treatements there due to unexpected licensing issues for some of the machines in the new facility. So needless to say we are still at the Mercy of red tape in order for Jessica to get all the treatments we have been waiting for and while we wait is costing us thousands of dollars. That said, the timing on the fundraisers success and overall moral support couldn't have come at a better time. But it left me not very mentally prepared for Skyping ;) Hopefully I put on a happy enough face for everyone to realize how grateful we are and have been for EVERYTHING.
Even though we are not getting the full treatments at this time. We are still receiving so much more than anywhere else she could be. Not to mention we are surrounded by people who really care and want to see Jessica get better.
Dr. Defina says he would love to have Jessica be the one speaking at next years IBRF fundraising event.
I am working hard on our New Jersey Fundraiser that will be in February. I also was able to teach a Saturday class while home so I can attempt to pull off Christmas. So if "Lisa" seems a bit lacking in response to emails and phone calls please know I love and appreciate both but just losing my mind a bit! :) I am very blessed with good friends who don't give up on ME either.
Ok the good news is Jessica is doing great! Thanks to Don again, you get to get a glimpse of some of her day by him posting videos. Don and I were just talking yesterday and our normal questions to whichever of us is with Jess at the time are always...Anything new? The great part about that is now when we talk we continue to answer YES! They may not be huge changes but Jess now is taking commands daily. Where in the past we would get one maybe once a week or something.
It was awesome last week. Dr. Fellus did his daily check in with Jessica and he said "Is it me or does Jessica's face look different today? and I am not talking about her achne" She looks more "here". I said," I know. She has looked like this all day!" So he said "Jessica can you say hello?" She then went from sitting completely still to breathing hard and moving her hand around as if she was frustrated. Then all of the sudden she took a deep breath and made a sound. Dr. Fellus got a huge smile and said "YES! She really meant to say something!! She was really working at that!" "Thank you Jessica, Good Job!"
She definitely is getting more consistant. Don and I had to remind ourselves of that change. We too are always wanting and looking for MORE but we get it..just not the big MORES we pray for daily.
Just because we have been in this two years doensn't change our impatience or expectations on hearing Jessica communicate. In face, I just had another dream. In my dream I was just helping Jess get dressed and like I do 50 times a day, I said "I love you Jess" but then she said very non chalantly said " I love you too". Then she started to laugh hystarically with joy. As if she couldn't believe her voice actually worked this time. I remember feeling this huge relief and joy come over me..... Then I woke up! URGHHH!!! Progress though..... I didn't cry this time. I now more often just wake up and tell myself. Some day soon.
I recently spoke with a counselor I knew who although was not an appointment was nice enough to speak with me for an hour without payment :)
I was telling him how I struggle to sometimes be close to Jess that although I cuddle her daily I have trouble doing so as much as I used to. Because still, everytime I do for any long amount of time, I start crying and I don't want her to misinterpret it as me feeling hopeless or that things are worse or that she is causing me any hardship. That I also struggle to remember what she sounds like or acts like and it frustrates me because as much as it hurts I don't want to forget. I feel like I am disconnecting when I do that. Thankfully he made me feel better. He said it was a coping mechanism that the brain provides (God's gift to me I suppose) that if I were to focus on all those things clearly every minute of the day, that I would be stuck in my depression. That to some degree we shut things off temporarily so we can function or acheive the details we need to take care of in every day life. That as we get stronger the more things will be released. I guess its like when you have something tragic happen and you don't remember the details.
Obviously I am sharing my junk right now but I do so because I know I am not the only person who has a family member that is ill or has passed. The relief in knowing that I wasn't forgetting her or loving her any less because of my coping skill made me feel less insane or horrible and I don't want someone else living with that feeling to if I can help in that. It also helps me not be as hurt when I think about the family/friends who don't keep in touch with us.
I have been speaking with a family who is now just dealing with their husband/Father who has a TBI. They are in the stage of the whole getting kicked out of the hospital, going broke and fighting for descent care and looking into possibly moving him to Meadowlands. I am grateful that because I had a team of people who helped us get through that time that I am able to help them. I forgot how much I learned the system and the do's and don'ts of fighting. The politics involved and the good places vs. bad. Again, I haven't forgotten the Brants, the Ehenburghers, Valley Christian and the team of people who came to that front lawn at Santa Clara Valley Medical fighting for Jessica. It just makes me want to help them that much more. Knowing that not all families will have the God given team we had during such a horrific time!
Ok well, I have a fundaiser to work on so I will stop the novel for the day! Thanks again to everyone for your continued efforts in helping us. Thank you to my New Jersey Mamas for having a little Birthday party for me in Jessica's room. I surprisingly ended up having one of the best Birthdays ever. I was able to celebrate with the Statue of Liberty, Taken to Manhattan to shop in a snow storm and got Jess and I the cutest leopard print rain boots to share! We know how she loves rainboots!
October19 @ 12: 45 p.m.. (EST) Another long update. For those of you who just want progress report...scroll down to the * paragraph :) Its a doozy!
Good morning! So many things to share this time. My last visit home was to say the least a challenging one. You ever have those times where it seems nothing can go right? It started with our van out here starting to break down while Jessica and I were 20 miles away at church. Then my lap top breaking. I came home to another broken computer so no way of updating or getting things accomplished and my car broken down in the drive way. Only to finish off my last night with the refrigerator deciding it was time to stop working and having to clean up that mess and toss out everything that I had just purchased for Trent. Hard enough as they all are but with my work being Jessica so no income.... it took me about an hour before my stomach stopped hurting and I just chose to just trust that all would work out.
I also had received bills from her rehab doctor at home that had a very large balance that didn't make sense. (Thousands of dollars off) So I called them and was told that because Jessica is a higher maintenance patient they weren't just charging us for the visits but any time spent on the phone or on files on her behalf. I couldn't believe it. I was like Uh I don't remember signing any contract agreeing to this (nor would I have) and I don't think you can charge me per hour without hmmmm maybe discussing that? Anyways, move on. Need to stay focused and just know that its all worth it.
The one bonus was I was able to see that my faith still is strong because the old me would be having a nervous break down at this point! (Thank God for my faith and the special people in my life who keep me strong :)
Anyways....After gathering my thoughts I decided to take my little spending money that my friend sends me each month and get my pedicure. that usually makes me feel better :) You would think this was a safe move right? Well...at the nail salon they know about Jessica so the topic came up. A woman getting her nails done asked me about Jess and we were discussing her progress etc. She then asked if Jessica's heart stopped at the scene. I told her yes. She asked for how long. I said, well we are not really sure but I choose not to focus on that day. She then said well if it was over four minutes she would be brain dead. I am glad you don't think thats the case! Now, a year and a half ago I would have been sent into massive depression for at least a week. But instead I smiled and knew she didn't mean me harm but just wasn't thinking. That this has no impact on what I know and believe for Jess. Obviously this conversation will stick with me for the rest of my life but for more reason of just trying to educate people on being really careful on what they say. That sometimes ....less is more. That just because people are functioning and smiling doesn't mean that they are strong enough to handle anything someone has to say as if they were talking about a complete stranger.
Ok its not all a downer hang in there....Its gonna get really really good :) Needless to say I was pretty exhausted emotionally. Fighting the negative is a lot of work. Thankfully I dragged myself out of bed the next morning and went to church.
Trent and I normally sit on the right side but for some reason this time we sat smack in the middle. Our pastor started his sermon that was on "Recovery". I was thinking... PERFECT! Then as he was talking he stops and says Oh, Lisa Huse is here. He thanked me for the letter with the update on Jessica and began reading it to everyone. Even though he was reading what I wrote it was like someone else was giving me a report. He finished the letter and said we are all just standing and praying for Jessica and believing for her complete recovery. Everyone was clapping and saying YES! I was surrounded by 500 people all believing with us. Not one looked at me like many do...like that poor woman is in denial. They all looked at me like a team cheering us on. I can still hear them. YES!
Moral to that story. It counter acted all that I had felt the day prior. It reminded me of one of the reasons why God wants us at church. To be surrounded by like minded people who share the same beliefs and can lift each other up when you are beat up by the world around you.
So thank you Gateway and Pastor Dave! You helped me get back on track!
I flew back into New Jersey to find that we are almost out of funds. Did this freak me out...for a minute! LOL but within days was encouraged that the Fundraiser I had hoped to do out here is a go! I spoke with the Restaurant owner of La Reggia, Nadia at Meadowlands Hospital and of course my man Dr. Defina and we are ready to go! February 2nd we are having a dinner dance her in Secaucus. Its going to be awesome! Yup, this means Jess will still be here in February!
* Ok ya ready!!! Jessica has had the best two weeks EVER! I will follow up this update with her videos and photos of some of our friends/staff here. Now keep in mind if you are not familiar with Jessica prior you may not appreciate the amount of progress these videos show but in addition to us, her team of doctors, her therapists and the staff... are excited! It is confirmed that Jessica hears, sees and comprehends the things we ask of her. Also tests show again, that Jessica is making progress.
She started showing some real signs on Don's week. Maybe her Grandparents being in town brought good luck! :) Don was so excited he would call and say, text Jen (her O/T) she will confirm. Its not just me being excited!
First : Don and Jessica were visiting another patient and when they were about to leave Don told Jess to say goodbye. Jess raised her arm and waved and gave a vocal sound at the same time. Then during therapy they put a pen and a banana in front of her and asked her to put her hand on the pen and she did. She selected the item requested numerous times.
She worked on hitting the Yes/No buttons and had some success doing so.
When I arrived I always come in with my Cautiously Optomistic attitude since on occasion Jess will do something one day and then we don't see it again for awhile. But from day one of my visit. Jessica was on fire. You will see in the first video Jessica is in a lying position. Now about 100 times a day we ask Jessica to pick her head up and very rarely do we get any kind of response. You can see in the video she not only does it. She responds within seconds and does it from a more difficult position. We also see her fighting. We haven't seen that in two years!
The next video is showing Jessica choosing the orange cup over the banana. She not only is hearing the command, she can see the objects and knows which one is which. She struggles control the movement over her arm/hand but she clearly chooses the correct one. Although I only show one time in the video she did this four times correctly when asked.
Last video: Jessica has been working on following the command of reaching the pegs and getting them off the board. Her fine motor skills are obviously harder but she locates the pegs and although not shown in this video she had swiped away the pegs and one was left. She immediately went back and got the remaining one. In this video you will see her require assistance for the last one but she closes her hand around it and pulls it out.
The night before last Jessica was falling asleep and had just taken her Ambian. All of the sudden her eyes opened up and she looked right at me. I said "Hi Jess" and waved. I said Jess can you wave back at me. She picked up her hand and waved at me immediately. My Mom and I looked at each other with our jaws dropped. So I hugged her and said Jess can you do that again? And then she did.
Yesterday Jessica got Botox on her mouth and neck to see if they can control her twitching which can not only help get clearer readings on her QEEGs but they say it could possibly help with speech and eating.
Thank you for my Jersey friends who check on Jess while I'm away and send me praise reports. Thank you all also for your prayers and dream stories. We had 4 people in the last two days report that in their dreams Jessica started talking. Me being one of them. My dream was that Jessica got frustrated with me and all of the sudden started blurting out words. Then she felt guilty for being mad at me. I told her if thats what got you talking...BE MAD. Then our nurse Pam came in and said "I never have dreams of Jess but I had one last night. She was mad at you about her outfit and all of the sudden she started talking in sentences to tell me about it!".
So keep praying about that speech. Even if she tells me to "STOP". I am good with that!
10-3-10
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October 2nd @ 9:00 pm. (EST ;)
Hi All, Lots of catching up to do. Its been quite the week. Like I mentioned before, once I fly in these days it takes a couple to get acclimated to the time difference etc. and keep up with Jessica's busy schedule.
Now for those of you who want to the quick update.. Jess is doing great. She has started taking more commands again. Her getting sick throws her off. The last couple of days she squeezed our hands when asked and hit her yes button when asked and both eyes are staying open much more of the day.
Now for you others....grab your coffee again :) This is what happens when I take too many days in between updates. I promise it gets good.
Last Sunday I was excited. I woke up early and was ready to get Jess and I back to our East Coast Church in Wayne, NJ. I was really feeling the need to just spend some time praying and quality time with Jessica (Not to mention..Me being up early and excited at the same time is a miracle in itself) Just as I was finishing up with Jess I was brushing her teeth with this very small toothbrush I use for the details. Due to Jessica's bite reflex I am no longer able to get inside behind her teeth. As I was brushing her back teeth she opened up just as I was moving to the front and bit back down....catching the end of the tooth brush and breaking it off inside of her mouth. I couldn't believe it. The end I had was jagged so I knew that a sharp end was inside of her mouth. Her mouth started to bleed and I started to panic a little. I tried to get her to open her mouth and when it didn't work...I DID panic. She finally opened up quickly and out of pure STUPID instinct I put my finger in her mouth to get the toothbrush out.
Unfortunately that triggered her to bite down. My finger is now stuck. I am in pain and trying not to yell so not to stress her more. The more I tried to pry her mouth open the more she bit down. (I know this is not the way to do it but I wasn't thinking to clearly) An aid walked by and asked are you ok? I finally yelled. No, can you get me a nurse. I got Jess to open her mouth to get my finger and next thing I know I have a 3 nurses by my side trying to get it out. Finally I was able to put something to wedge her mouth open and she spit it out.
I had a little chunk out of my finger but Jess was perfectly fine! Unfortunately I couldn't remember the last time I had a tetanus shot. Not to mention since we moved here half the time which means giving up income, I had to give up my medical insurance. So a trip to the emergency room was not a fun thought. But mostly I was mad because I really wanted to go to church! Its like medicine for me. I know that sounds ridiculous but I was not going to allow this to ruin my entire day. The doctor and nurse on the floor kept saying I should go down. So what do I do? I think this sounds like a job for Dr. Defina. :) I know he will come up with something and if I really had to go that second he would tell me. :) So he called down to ER to get me taken care of and since they were busy and I would have to wait he said GO TO CHURCH then come back and we will get you taken care of. See I knew great minds thought alike :)
So off Jess and I went to church and we were only 15 minutes late. Still plenty of service left when you go to a Christian church :) We go for hours!!
The sermon was on the story of Joseph. It just happens to be a story I relate to on many levels. So my ears perked up immediately. One of the main points of the sermon was how Joseph didn't do anything to deserve to be mistreated or have all the things happen to him that did, but that in the end he was blessed a thousand times more than the pain he had suffered. That he continued to have faith. Not sure exactly how long his imprisonment and anquish went on for but some believe 17 years. He talked about how we can look back and go wow thats horrible but how he had to go day in and day out getting through each day and one bad thing would happen after another. He could have gotten mad at God and turned away but he still trusted for a better time to come. Then the pastor spoke to all of us... He said some of you have been waiting on God for not just months. Some have been waiting for years. Some of you here are feeling like maybe he has changed his mind on that promise or that he has forgotten you or he doesn't care.... God wants you to know he hasn't forgotten you or his promises and he cares for his children more than you know... Just hold on. Your miracle will "EMERGE".
I just sat there thinking. Did he really just say EMERGE? Tears rolling down my face. Those of you who follow Jessica's story know how much that word means to us. We named her concert Emerge. You may have a t-shirt that says that. It just confirmed for me what I already know but it sure is good to feel refreshed in your faith. Why do I always forget to bring kleenex to church?
I sat there thinking...I almost didn't make it to church today. Had I listened I would have missed this. Jessica would have missed this. But we didn't so I receive that word and am thankful.
I also was encouraged by another reminder. I was reading Chi's page and Gina reminded everyone of many of the stories she has read and people we have talked to that this doesn't always happen in a year or two years. For some it has taken 7 or 8. I don't say this because I think or accept it will be that for Jess but it just reminded me that everyone is different and we have to keep believing that we will get sweet Jess back.
Since the move here it has been a little frustrating because half of the machines (the major ones) haven't been fully set up yet. So Jessica is not getting those treatments. Although we are getting so so much more than we did at home. (Laser, Neurofeedback etc. and the daily tweeking of medications) but the biggies have been delayed. Like any move and new/rare machines you are relying on so many things to make it happen. Dr. Defina's accident definitely delayed things along with the move to Meadowlands. I am trying to stay positive and understanding and I know they are doing all they can to get things set up but some delays are out of their hands. So I look forward to seeing these things happen. Thankfully Meadowlands are like family to us. They go above and beyond to help support us. So I try to take the good with the bad. Like any "Start Up" they have growing pains. But I am very confident that all will work out. In the mean time...I will just keep bugging them :)
In fact I had two meetings last week with the team and one unexpected delay was Jessica's shunt. They had to get clearance from our neuro surgeon to do the magnetic stimulation and then also obtain the tool to reprogram it after the therapy since it can throw the settings off. So lots of stuff...Pray for progress not only in Jess but this department and the people that have to come from other places to work on things here.
Mostly tonight I want to thank all of you who help us. From both coasts. Not a day that goes by that I am not reminded of how we got here and how we've been able to stay. I don't just say this. I mean it from the bottom of my heart I know we are blessed to have you. Thank you for your compassion and standing with us as we continue to fight for Jess.o
This weeks Update on Jessica (taken from Facebook Group page)
