Greg/Family update March 9th, 2010

This BLOG will be long and winded, but I am a writer at heart so please bear with me. I promise it won't be boring! As I sit here this morning, it's not even 7am yet, but I know it will be much later by the time I press 'publish'. So much to say, so many thoughts to gather.

Greg came home from the hospital last Tuesday and we had his first (of many) appointments with the Neurologist on the following Thursday. We had a lot of questions for him, we wanted to know if this could happen again, how did it happen in the first place, what kind of meds or foods he should avoid, if he should keep worrying about having seizures and the list goes on and on.
The stroke, as he explained, happened in the same exact area as before, deep in the Right Temporal Lobe. It's an area of the brain where they cannot get real good scans because it's so deep, but since the area was weak from the initial stroke, the combination of too much cumadin (a blood thinner he was taking) and a weak vein, who was not very flexible and elastic because he has 'Arteriosclerosis', was a disastrous combination. The vein burst, cumadin at fault. The Neurologist put him on cumadin after his first stroke because, in fact, while MRIs, CAT scans and other tests he took did not see ANY clots ANYWHERE, apparently he must have had one in the Right Temporal Lobe for this to happen in the first place, where the doctors noticed unusually (genetically) THIN veins, and wanted him to possibly avoid another one. He is, of course, off cumadin now and forever and might only need baby aspirin from now on, but not for a while. The seizure medication he was on was only temporary, while he had the large hemorrage in his brain.

What I found strange is how none of the Doctors in the Hospital were at all concerned with allucinations that Greg had while in the Hospital. He had a sleepwalk incident (and he can't even walk without help, so that was something else), a couple of disorientation episodes and one where he heard Skylar's voice everywhere. I did research it and "auditory" allucination are not unheard of in people that have strokes in that area of the brain, but I could not find anything conclusive about the disorientation and the sleepwalking. Fortunately he hasn't had a single episode now since last Wednesday night, but I for sure will bring it up to the next Neurologist appointment, one that I will make today with the experts in Loma Linda. He will have another CATscan before the end of the month, followed by another Neurologist appointment to discuss the findings. They want to make sure the blood he lost in his brain is completely reabsorbed. When he was released the last CATscan was good, so we're hoping to get even more good news.

The bad news, of course, is that he lost much of the progress he had made in the past 3 months. He can't walk by himself without his leg brace, and his arm is back the way it was shortly after his initial stroke. He still can't dress himself, nor take a shower unassisted, if we go anywhere we need the wheelchair, even mundane tasks such as getting anything our of our fridge in the garage is out of the question. Opening things, At night he has to use the urinal, and he needs tons and tons and tons of rest.

We do have an appointment with the General Practitioner tomorrow to discuss the future and do some blood tests. Presently Greg is taking better blood pressure medication, which has improved his numbers substantially (Thank You Mary for sending that new machine to us, we LOVE IT!). If he keeps his BP down like this, without the blood thinners and his cholesterol stays low, it's unlikely he'll have another stroke. He's started exercising LIGHTLY and will keep it light from now on.

This, of course, leaves me to pick up the pieces. I chuckle when I read that famous 'God doesn't give us more than we can handle" from well-meaning friends and family. Why do I chuckle? Because, well, God must think I can be two places at once and have 4 arms or something. So many times, during the day, Greg either calls me because he needs me while I am in the middle of changing Nicky's bandages, or Nicky calls me because something happened while I am helping Greg, or then Connor needs something while I do something else. I worry because I have to leave Greg alone all day while taking Nicky to CHLA, and worry about Nicky when I have to leave him alone for several hours when I take Greg to the various Drs. It's ridiculous. Last night I was on the toilet (yes, I know, TMI!!) and all THREE called me for something! WTF???? I go to sleep absolutely exhausted, with my to-do list getting bigger by the day. I feel like I've aged 10 years in the past 5 months.

Last semester, when Greg had his initial stroke, I was only taking 2 college classes and I was able to take an (unpaid) leave of abscence from work. This time around, not only I work and can't afford to take a leave of absence (I only work 10-15 hours a week, but it still takes away 2-3 mornings away from me, and I am using the money to pay off the bills so I will be able to take a 5-month leave of absence when I take Nicky to have his Bone Marrow Transplant when Greg becomes independent again-more on that later), but this time around I am taking 3 college classes, one of which has a TON of homework. Of course I am also the sole person in this house that buys and prepares the food for 4 people (yes, Nicky does not really eat, but I still have to get his tube-feedings ready), the sole person that does laundry for 4 people, the sole person responsible for cleaning after 4 people, paying bills, getting everyone bathed, dressed, take the the kids to school, make sure they do their homework, take everyone to the Hospital when they need to and run the million errands I always have to do, going to the bank, the pharmacy, buying birthday cards, organizing birthday parties, making sure the holidays are fun for the kids and the list goes on... and on... and on. Nicky of course is a challenge in itself. He needs iron transfusions once or twice a month, bandage changes daily, and even at 13, he's far from being independent. Without a cure, he might never be. All I have to say is... God has some explaining to do. If at "least" I had some family members nearby that could come on occasion and help out, even if it was just to bring dinner once a week, would help tremendously, but we have no-one, not a single soul nearby. My family is in Italy, Greg's sister is in Florida and everyone else is scattered around the world, unwilling or unable to come.  It really hurts to see family members going to help other family members watch their (healthy) kids so they can go on "vacation" or just away for work, or simply to give them a break, yet they are leaving me in the dust. Gee, thanks. We are alone. That, my friends, is perfectly clear. Duly noted. Kind words are great, and they help a lot, so I am thankful for those wonderful souls who have taken the time to write me a note to lift my spirits the past few months. *THANK YOU*.

It was suggested to me that I ought to go to a local church and ask for help. That is nice, but I am extremely uncomfortable going to a church I never go to, begging for strangers to help me. That, I am sad to explain, would not be of any help to me, it would simply be yet ANOTHER source of stress. I mean.. how LOW can I sink? Having a STRANGER in my house cleaning my bathroom? No, thanks. At this point the status of my house, my laundry, is the least of my concerns. As long as they don't get too out of control, I'll get to it eventually. I have my to-do list and I'll stick to that. Slowly things will improve and we'll go from there. I will survive this, my only fear is I'll feel as I felt the other day, I truly felt I was on the edge of a nervous breakdown. If that happens, my family is TOAST. *SIGH*
While we were already planning a possible move to Italy when Greg retires and Connor graduates High School (in roughly a dozen years or so), now this has put a 'definite' on it. Greg loved Italy and suggested the move when we were in Italy 3 years ago. We have so many amazing friends and family members scattered around the world, but nobody is HERE. When Christmas and Thanksgiving roll around, we're always alone. The one city in the entire planet where we would not be alone is my hometown in Italy. My parents, my sisters, my nieces and nephew are there and much more extended family, such as my aunts and cousins. We'll never be alone again. Nicky is excited, he loves my family, and Connor, well, how exciting will it be for him to go to a University in Europe? What a lucky guy! Growing old with my sisters... yes, if there is something all of this has taught me is how much my family really means to me.

This of course brings me to Nicky. I've been following closely the progress of several children with RDEB going through a Bone Marrow Transplant at the University of Minnesota. While the results have been mixed, it seems as if for the most part, the rewards are worthed. It may not be a 100% cure, but it might eventually be that as the cells replicate with time. There are several children going through the tranplant now that are roughly the same age and form of EB as Nicky so we're keeping a close eye on it. I already contacted Minnesota, and we're on the list to go-we have no time to waste. BMTs work best on younger children, the older Nicky gets, the harder it will be for him. And, IF, God forbid, he develops any problems with his internal organs, or gets any form of skin cancer before we go, he's immediately "out". The problem is that now we're at a standstill and  can't go until Greg is independent enough not only to care for himself, but to care for Connor as well, since I won't be able to take Connor with me (and to say I will miss him terribly is *THE* understatement of the year). My Fear at this point is that while we wait for Greg to improve, we wait too long for Nicky, and right at the time when it's finally the time to cure him, we might miss out on his cure, which might spell a death sentence for him. That's the harsh reality. I am trying to think that maybe we're meant to wait so they can perfect the transplants and make them less risky, but time is not his friend. So many of Nicky's EB friends have been taken away from us already, new ones fly to the angels all the time. Nicky might actually have a chance, but will this block on MY road spell disaster for him? That's what keeps me awake at night.

***I have one FAVOR to ask!! Greg always asks me if SO-and-SO read the Blog with the updates... but unless there is a comment or a 'like' (for those on Facebook), there is no way for me to know. So, please, this time ONLY, if you READ this, take the nanosecond it takes to click on *LIKE* (on Facebook) or if you read this on my original blog, do leave a comment underneath, even if just to say one or two word {such as Love, Hugs or whatever}. I would really appreciate it!!

{{HUGS}} and Love-Thank you once again for the kind words. You make my day.

Silvia