Jitka’s status Blog

A website to keep family and friends updated on Jitka’s health.

September 7th, 2008 by janos

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!

 

 

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