Dear all,

Everyone here is doing alright. Jani is making his way through the firefighter training and has one more month left. During this time he will have some state exams and once he passes those, he will be official. Rowan is really enjoying school and doing great. I would swear Encsi got taller over night last weekend and she is learning a bunch of new words each day. I know I say this every time I update the blog but I can’t stress enough how glad I am to be with them. They are such a source of happiness and peace to me in all this.

As far as my health goes, I am not feeling too hot these last few days because got a cold. I can’t cough the way I did when my diaphragm worked and my strength is low but Jani has really done a lot to keep the family operations going and given me lots of chances to rest so hopefully it won’t take weeks to get through it like it did when I was in the hospital. Otherwise, my fluid balance seems to be much improved since Khaled suggested that I increase my desmopressin does and at last check, my blood sodium was good.

Last Monday Sept 8^th was Bunko night. I have been very fortunate to be able join in the fun for a few of these nights at other people’s houses and the support and help I get from the ladies continues to amaze me. When I pull up, several women come out – a few grab the ramp from the back of the van and put it to the stairs while others help me into the house. Someone always makes sure that if I can’t get to something, they get it for me. I really enjoy these nights very much.

On Tuesday night there was a Rehab Social that the Outpatient Rehab clinic put on. People who had been patients there and their families were invite to come a visit with the wonderful folks who took such good care of them. I adore the people there and so it was a nice opportunity to visit with them.

On Saturday it was Rowan’s birthday and we needed to get some things at Sam’s club before people arrived. Before that, we went to a benefit at the Jaycee Park for the Dream Factory where the local firefighters and police were raising money by competing to see which organization could get more heads shaved! As it turns out, one of the firefighters’ wives recognized Jani and then me because she took care of me in the ICU. Her name was Kristen and she was a very energetic kind woman and was so glad to see me recovering so well. It was wonderful to hear. She encouraged me to go back to see the folks at PCMH because they would be glad to see how far I have come. Frankie and I have talked about this and I have wanted to go back since I got home but everytime I start to even talk about it I get overwhelmed with emotion. I don’t think that will change any time soon though and I would like to thank all the people that helped me and put up with me!

In the afternoon, we celebrated Rowan’s 5^th birthday with friends – Gabor and Judit came with their 3 kids Izzy, Vince, and Lily, Scot and Logan came, Penny brought her 2 girls Ana and Carla, Dave joined us, Shannon came with Daniel and Taylor, Tonya brought Jordan, and  Teresa and Dave joined in for a bit as well. It was a wonderful crowd and even though we asked people not bring stuff, they did anyway and of course, Rowan was very grateful for that. We all enjoyed it.

On Sunday, it was Estefania’s 19^th birthday. Jani BBQ’d, Gabor and Vince dropped by for a bit, and then Emilia sang a birthday song in Spanish and the rest of us sang Happy Birthday in English and celebrated with some cheesecake!

Tuesday night, Jani put me onto Encsi’s bed so I could snuggle with her before she went to sleep. Since she was still in the crib in the other house and graduated from the Pack and Play about 5 months ago, this was the first time I did this and it was wonderful. I really miss being able to do this kind of thing. The chair is not the warmest spot to snuggle.

As far as work goes, this week was busy.  I interviewed some people for a tech position in my lab. We had good applicants and so hopefully this issue will be resolved soon. In October, I will be serving on a grant review panel. Jani didn’t think I could pull off traveling on my own and was not happy about it. When he mentioned this to Teresa  and I explained what the plan was, she immediately offered to accompany me. This is a big relief to everyone since it is my first excursion not only away from home but away from Jani.  I don’t know how I have been so fortunate to have such wonderful people in my life.

Well, I realize this is a short addition but my head is not happy about looking at the computer screen and so I will try to rest a bit more before bathing and dinner rolls around so I can help with that.

Have a great weekend everyone!

Somethings I forgot to mention (you probably aren’t shocked by this. I know I’m not!):

If you see me driving and I don’t wave, it is because I need to use both my hands to drive – right for steering, left for the brake/gas!

If we don’t answer or return calls or e-mails in a timely fashion, it isn’t because we didn’t get them or don’t care – there just aren’t enough hours in the day! Thank you for thinking of us when you do and please keep trying!

Dearest Friends and Family,

I have a chance to write today as tropical storm Hanna cruises to the west of us. Fortunately, the only thing that happened to us was that we were without power for a couple of hours this morning (Saturday). Jani was called in to back up the regular staff because they went to other places to help out and so we was gone for about 24h. With the help of Emilia and Estefania, and Rowan being a big boy helper, we managed just fine.

Once again, I have much to tell you about and all are very important and special to me so no particular order.

My health – fluid management seems much better since dr. kal recommended to increase the dose of ddAVP. I had a blood draw on Friday and so we’ll see how my serum sodium is fairing. No sense of smell yet. Strength and independence are good – got put to the test Friday night because Jani had to go to work and then be at the fire station all night. I did all the transfers I needed to do on my own (my soldier helped me of course!) and did not kiss the floor! Whohooo!!!

So I left you last by saying that my good friend Hope and her family were going to spend a week at Nags Head and the following weekend (Labor Day) Khaled was coming to visit….

It was so great to see them all and to meet Carmen (15 mo) for the first time. She and Encsi played and the boys all romped in the water and had a blast. Hope and I have known each other for about 20 years and so it was really wonderful to spend time with someone who just gets it. Her husband Jay is awesome (they have been together since high school) and their kids are absolutely gorgeous and sweet. It was a short visit but wonderful!

As I have mentioned before, we all endure hardship of various forms. It is how we cope with it – live our lives and appreciate what we have – that determines the quality with which we spend our days. There are not too many people I know that don’t have some reason to be bitter if they chose to be. The fact that they aren’t is because of their strength of character and the love they have from  and for so many. I am lucky to be part of such a fabulous group of people.

Khaled’s visit was WAY too short but of course really tremendous. I was able to drive the van to the Raleigh airport to pick him up and so I felt a good feeling of accomplishment not to mention I was ecstatic to have him here for the long weekend! Saturday we took him to the beach and I’m pretty sure I was the envy of all that could see – Jani picked me up and Khaled took the tube to the water and they both held onto me so the waves wouldn’t roll and toss me around. I was in heaven!!!

Sunday I was “assisted” (did I mention that I have a really handsome Hungarian crane?) onto the 4-wheeler and got to ride my brother around – up the street, through the trees….as  much as it is not our style, we enjoyed the time together! He told me it smelled like pine.

Monday was a chill day. Jani made us all a nice breakfast of fresh eggs and then Scot and Logan came to join in the fun for a bit. Jani took Rowan and Logan on the 4-wheeler together and drove them around the yard. After lunch, we got into the van and drove uncle Khaled back to the airport. Mommy cried. Can’t even think about it now. We have been close for many years now but for those of you who know both of us, you know how important we are to each other. I am so lucky to have such a wonderful brother. It is amazing he still speaks to me considering that I was such a terrible big sister when we were younger (we are almost 6 years apart)!!

Tuesday morning I had an appointment with Dr. Reeg and the x-rays show that everything is good.  He checked my spine and my hip where the donor site is and fortunately, I don’t have any pain.  We had a very good discussion about the advances in science and technology.  I told him about the ReWalk.  The week before, Shaun Reece had forwarded this link to Mike VanScott and wasn’t sure about forwarding it to me because he didn’t know how sensitive I am about this. In fact, I think this is phenomenal and so I immediately forwarded it to many people.

http://www.dailymail.co.uk/sciencetech/article-1049215/Paralysed-man-walks-thanks-Robocop-style-exoskeleton.html?printingPage=true

The responses were rapid, many, and VERY enthusiastic! Thanks everyone! I told Maureen, Neil, and others that I am going to wait for the submersible version!

See it in motion here: http://www.youtube.com/watch?v=gQRQs-N-ZIM

Since then, I have found many other sites that talk about this and the idea is that it will be miniaturized to fit under clothing. So no more leather pants I guess! (BTW, I don’t own any but someday I might!). Seriously though, between the love that I get from all of you, and the science and technology that I know is in progress, it will be interesting to see what happens in the next decade. The orange chair is temporary I am certain!! The fact that this will cost around $20k and my chair was $6k is astounding.

In that line of though, I want to tell you about some of the wonderful people I have in my corner. So many have told me that I have been in their dreams and they have seen me walk or that they are impressed by my strength and have watched my recovery – a friend of mine from Kingston, Christine Overvelde, Frank and Linda VanHal who keep tabs on me like I am one of their own, our kind minister neighbor Mr. Gunn, a friend of mine from New Orleans, Andy Pellet, an ICU nurse that took care of me that I ran into in the elevator, Kay, the Garcias in Houston, Yehia Sirry and family in Toronto that have been friends of our family for probably 50+ years, Cheryl from the Emergency admin department that offered to help me up the incline to the door of Brody, family and friends of my brother and Mervie, family and friends of Jani’s in Hungary and around the world, my mom’s family and their friends in the Czech Republic….the list is really amazing – many hundreds. It makes me truly glad when people like Kay and Cheryl tell me who they are so I can thank them personally. From people I have known since I was a kid to people that met me because of the accident to people that my know my family and friends but have never even met me, the care and support I am still getting continues to be overwhelming. Thank you.

On that thread, Christine asked me why I feel my recovery has been so rapid and excellent. It is because I am so very fortunate to be in the hearts of so many from different faiths and beliefs that the energy I receive through all of you is immense. Thank you for helping to heal me.

I have been asked a few times what the worst thing is about this situation and many have commented that I don’t seem angry. The worst thing is not being able to show affection the way I was used to. The anger…well, there isn’t time and I don’t want to waste what time I do have.  I was a lively person before and I am grateful to be the person in my heart and mind that I was before.  My kids need me this way and I think it would be selfish to wallow. Life is awesome and I want them to grow up experiencing that. I won’t lie and say that I am not frustrated by all this. I certainly have my moments. The life I have is something I deeply treasure and the love from family and friends is integral.

The rest of the week was very good. Jess had her first committee meeting on Wednesday and did very well.  We might have to alter some things depending on how doable the first part is but that is the nature of the beast! She is a hard worker and loves the project and so I think that it will be productive. I enjoy being a mentor for her. I was lucky to have an outstanding graduate school mentor, Dr. Kathleen McDonough at LSUHSC, so I try very hard to emulate her.

I had lunch with Rukiya VanDross and Audrey Jenkins and had great talks with them. They were part of one of the crews that came to the new house to help get things ready for me to come home. They told me how nice of an environment it was because there were so many people that didn’t know each other but everyone was so kind. I am so much more than grateful to Jani, Dave, Teresa, the Maas family, and so many others that coordinated and were part of this effort.  

So I got some help from Jas (Emily’s techie hubbie who has pretty good hygiene for a computer geek btw!) in figuring out how to upload the pictures. They made it to the admin part of the site but apparently there are other steps I need to take to make them viewable to all of you. I will get there soon! I am adding about 20 more that go with this so there a lots!

Lastly, I want to tell you that I have asked Bob, Khaled, and Jani to come back online and write a few words to all of you when the one year anniversary of this chaos comes on October 19th and they have all agreed. I am planning to ask my parents too.  They have been through so much. As a parent, I know this would be much harder. The support they tell me about from Wolfe Islanders who ask them about me means a lot to me and I know it means a lot to them. I just can’t imagine what things would be like without.

So with that, I will end this installment. My sweetest angel baby Rowan will be turning 5 next Saturday and so next time you will hear all about the party we are having for him (and all the things I that I will remember that I forgot this time!) Until then, I send much love to all of you who continue to keep me in your heart and mind!