givincare

I wanted to give an update on whats been going on around with the three of us for the last few months. ME: I have been to the doctor to find out if there was something wrong with my heart. After several tests they could not find anything wrong which of course is good. I am trying to have faith that they are right but still have been nervous about exercising again. What started the concern specifically was an episode I had with a "funny feeling" and a (unsubstantiated) drastic drop in heart rate while on the treadmill. There is a family history of tachycardia (which I have too), which is odd because tachycardia is not suppose to be genetic. At any rate, I checked out OK. Work is changing again, for the better I anticipate. My lovely boss, who has made me cry more than any other boss EVER (I, by the way, do not cry easily), is leaving at the end of March. She is transferring to another location (nearby suburb) within the company, but she will be out of my hair none the less. The past six months or so have been pretty smooth with her and I, but I am still elated. She is a "control freak" and I am excited to finally have some freedom to run my department as I deem appropriate. I am excited that I will be able to implement my own ideas and take responsibility for my area-good or bad. It sad when you are just as excited about the possibility of failure simply because you haven't been allowed to try!!! Watch out, HERE I COME!!! Patrick: He is still volunteering at the adult day care program on Mondays. The clients seem to really adore Patrick and Patrick loves visiting with him. He helps do things like cleaning up after lunch and other similar tasks. I think this has helped with his speech also since he has to work a little harder to get his point across. He was released from OT and speech therapy at the beginning of February which was very nerve racking for me. We have been very lucky keeping his therapy going for the better part of three years. The last time Patrick was told he was being released from therapy, he didn't take it very well. When they told me in January that it was about to end, I was extremely nervous about how he would take it. I was pleasantly shocked when he was excited about it! The last time he had a feeling of "Sorry Patrick, this is as good as you can get". This time his take was, "Look how much better you are doing! You don't need us anymore!" I must say it is also nice not to have to plan things around therapy or worry about work/therapy conflicts. He has continued with his bioness therapy, but that is mostly at home with occasional follow ups with a therapist. He is also continuing his quest to drive again. He has had four driving sessions with a therapists so far. He will have several more over the next month or so where he is both evaluated and coached on what he needs to improve. The therapist will then write a "script" for the adaptive driving equipment which will include a left foot accelerator and a steering wheel do-hicky (my technical term-like it?). After they are installed she will drive with him in our vehicle and we will go from there. It looks like it is a matter of "when" and not "if" he will drive. Patrick is, in his words, chomping at the bit. Brandon:We have been on the upswing with our 16 year old son. He has been struggling with school and so after much deliberation and investigation, we removed him from his high school and enrolled him in an alternative high school. This seems to have been the right move. Some of the differences between this school and his old school are this school only has 4-15 students per classroom, he has the same schedule each week (his old school used block scheduling which is a challenge for most ADD kids), they call their teachers by their first name, they aren't given much homework-it's all done in class, and they don't put up with truancy. WHAT A NICE CHANGE! He will receive a regular high school diploma when he reaches enough credits, it is not a GED. While he is still not an exemplary student, we did receive a call from one of his teachers praising him on going above and beyond his other students on a project they did. WOW, I don't know if we ever had a call from a teacher to say something good before! All in all, I think we made the right decision in moving him. He always has been a good kid who struggled with school. Now he can just be a good kid. So thats about it. I have been on vacation this week and have a few nice stories to share, but I will do that later. This is long enough! I missed you all and I am looking forward to finding out what I have missed the last few months while I was computer-less!!! Take Care, Kristen

Kim, I am very sorry to hear about your loss. You and your family will be in my thoughts. Kristen

Sue, I am so glad to hear you had a good few days away. It sounds like a wonderful organization. No one deserves the break more than YOU! Kristen

Congratulations! Best wishes, Kristen

Marty, Patrick & I really enjoyed meeting you and Avery along with Sarah and Gary! How great that we could all get together for a bit! Sorry you had to spend an extra night in Nebraska. On our way home this summer we stopped in North Platte and ate at Mc Donalds. I am relieved to hear we didn't miss much by hastily making our way back to the interstate- except for the fine Walmart of course. Take Care, kristen

Sue, Your blog touched me very much. I know my life is very different from yours, the challenges we face day in and day out. That being said, I can relate to your feelings very much, more than most would know. Thank you for sharing your feelings. Kristen

Sue, I am glad to hear the bill was manageable. (even if it was JUST- better than NOT-LOL) Enjoy the rainy days. Summer is upon you and I expect these rainy days will be few and far between soon. Take Care, Rest Up, & Regroup Kristen

Welcome Home! You were missed! I am so glad to hear that things went well for you both overall. Sounds like you had a wonderful trip. Going to exotic places on a vacation are always exciting and memorable, but so much more special when you include family as well. I can't wait to see some pictures! Love Ya, Kristen

Patrick has been a busy bee these days! On Monday he had his first day as a volunteer at the adult day care center. This day care program is for those with Alzheimer's or dementia and is located in a neighborhood church. He is volunteering through the local hospital and there were a few hoops to jump through to get started, but Patrick did it with flying colors. His therapists personally recommended Patrick to the volunteer coodinator which was really great of them. Patrick was adamant about working with the elderly, and this seems to be a great fit so far. I dropped him off at 12 pm and when I picked him up at 2pm he was just beaming. I am not really sure what he did, but I know he made friends with some of the clients. One lady said, "I really like him" to the day care coordinator. He was proud of himself and I was proud of him too. He also had a first today- he rode the bus to therapy by himself. I had to work and we were unable to find alternative transportation so I told him either he learns to ride it or miss therapy. He hates missing therapy, so he agreed to learn how to ride the bus. To prepare him for it, we did a "dry run" together yesterday. We walked from our house to the stop to see how long it would take. We then rode the bus to the stop closest to the therapy and "got off" (not really. The bus driver was kind enough to let us get right back on without paying again). We then took the bus back to where we started and got off. We only had one minor issue. The bus driver would call out stops so I told Patrick to listen for the stop he needed for therapy. Unfortunately I didn't know he only called out specific stops, not ALL stops. We missed our "stop" and ended up one stop past where we needed to "get off". This made Patrick a bit nervous because he didn't get to see where he REALLY needed to get off, but I was able to explain it to him so that he knew when to press the stop button. This morning I was off to work and a bit nervous for him. I eventually called the therapy office to find out if he made it okay and he had. I was really antsy to know because Patrick forgot to bring his cell phone so I had no way to make sure he was doing okay and he had no way to call anyone if he missed his stop, etc. I called the house later and found he did it with no issues! Thank goodness. I asked him if he wanted a bus pass so he could go places while I was at work and he said, "UH-NO". I guess it is a little early for that. His therapists have been trying to get him to ride the bus for a year or more. I should be happy- and I am- with this success! Patrick also had another session with his bioness therapist yesterday and she gave him some good ideas on what tasks he should be doing with the device. She is encouraging him to wear the bioness and actually carry objects (like a laundry basket) around. There is a program on the bioness called the "grasp" where you can press a button and it will stimulate your hand to close. You place your hand on the basket handle for instance, press the button, and the hand will hold it until you press the release button. Then the hand is stimulated to open back up. It's pretty cool. She also wants Patrick to go for walks outside wearing the unit. She wants him to practice opening his hand with his stride mimicking how the hand naturally opens while walking. He has alot to keep him busy for a while! Take Care All, Kristen

Miss Sue asked me to update my blog so she would have something to read while she was out running all over the Land of Oz. I wish I could give an upbeat entry, saying how everything is coming together in my life, but I can't. It isn't all falling apart either, but it's full of frustrations and worries right now. Sometimes it feels like I have so much more to worry about than other people my age and it doesn't seem fair. But at the same time, I usually comfort myself by saying that although my problems are DIFFERENT than most people my age, isn't that all they are? Different? Isn't life always full of worries and frustrations? It's not suppose to be easy, is it? My biggest frustration right now is money. THAT is a universal frustration among the average population, I know. I have managed to get my bank account all screwed up and have been living on next to no money for almost two months. No matter how much I DON'T spend, it seems like I am not digging myself out. I have been out to eat twice since August, and the $7 I spent at Taco Bell last week for Patrick and me felt like a splurge (this is one of the two times). I am not kidding. I am going to be $500 plus fees in the hole again this week. Sucks to get paid and already be in the hole the same day! But there is a light at the end of the tunnel, next Friday I will get my bonus check and I should be out the hole again. Thank goodness. We still won't be able to do much, but at least I won't have the stress of knowing I am beyond broke. I am going to try to get an advance for the $500 I owe so I can have that off my chest Monday. What also stinks is that Tuesday is my birthday and Thursday is Brandon's 16th birthday, and there will not be much cash for a celebration. He will have to wait until after his birthday for a gift. UGH. Brandon is my biggest worry right now. That and the fear I myself will have a stroke or heart attack. Brandon seems only to be able to live in the moment- never worries about consequences. He will deal with those tomorrow. I am so tired of punishing him. It has to be done...but I wish I could be the parent whose child came home when he was suppose to. I wish I were the parent whose child cared about school. I am doing everything I can think of to keep him on track. His is what psychologists call "The challenging child". I am at my wits end. The stroke/heart attack comment? I meant it. I am worried. I need to go to the doctor but sometimes I think they will think I am a hypochondriac or something. I rarely go to the doctor, but for some reason I think they will pat me on the head and give me a muscle relaxer anMaybe, maybe not. The most recent "episode" that worried me was when I was on the treadmill about a week ago. I had been walking at a steady pace for about 40 minutes and was debating whetjer to stop or go for 5-10 minutes more. All the sudden, I felt weird. Not in pain but ...heavy...odd... so I checked my heart rate on the machine. I never really use the heart rate on the machine because I know it can be inaccurate. For some reason, this day, I used it several times while walking. My heart rate had been at 127 give or take a few beats. When I had this odd feeling i quickly checked it again. 57. I kept changing my grip, pressing harder, pressing lighter...still in the mid 50's. Then I was just about to have a panic attack thinking BEAT DAM IT BEAT! I got off the treadmill and haven't been on it since. There are other factors that have me worried about it too, but this blog is long enough. I know I need to go have it checked out. But I think I am terrified of what they will say. The rational side of me knows it's better to face it head on or know that I am okay, whichever it might be. But I am also worried that I will be eager to hear I am fine, so if the doctor doesn't take me seriously, I might not pursue it like I know I need to. Woman of 37, heart disease? Common, but doctors overlook it in women so often. Just look at Patrick. Stroke at 36! By the time the doctors really considered as stroke it was too late for the TPA to work. And then I think, surely GOD wouldn't make us go through this now, would he? I am just stressed, right? RIGHT? Kristen Bless all of you who read through this...

Wow! Sounds like school is starting off in the right direction for you! Good Job! I am excited to hear that you are now getting therapy, it's been a long time coming- and you deserve it! I hope it goes well! Kristen

Awe, poor baby! At least Dawson should feel better when this is all over with. I hope the next two weeks go by quickly for you both! Take Care, Kristen

Thanks Deenie, it did give me a chuckle! Bonnie, he is 16, and money is definitely his kind of motivation- I like the idea of doing it on a monthly basis... Thanks for everyone's encouragement about the diet, I need it! Kristen

It feels so incredible to be back after well over a month of NO INTERNET! UGH! It's so amazing how addicting and how much I depend on the internet for information. How many things I wanted to investigate, people to talk to.... Well here's what's we have all been up to: We had a great trip going back to Iowa and Illinois last month. We put over 2200 miles on the car driving around to see everyone! Just call me the road warrior... Patrick finally got his Bioness about two weeks ago and has been enjoying the therapy. We will go back again in about a week to work with the therapist some more. Because Patrick already has OT with another therapist, I have to pay 100% out of pocket for each visit with the bioness therapist. As you can imagine, we have to keep these visits to a bare minimum. This therapist will be giving his regular OT ideas on what to work on with him also. No one is expecting miracles, but if it helps- it helps! Brandon has just started school again, today was his second day. Everyone else in the world seems happy when their kids go back to school except me. Brandon struggles with school (and motivation to do any schoolwork) that I live for the day when summer arrives. This year I decided to offer him monetary compensation as an incentive for doing well in school. BIG money. I have never really agreed with that principle, but I decided it would be money well spent if it gets him to succeed in school and allow family unity (mostly my sanity). I hope it works. My big update is that I joined weight watchers Aug. 7th and have lost just shy of 10lbs! I want to loose at least 30 more, 40 would be outstanding. Right now I am just focusing on losing it a few pounds a week. It's alott less intimidating to look at it one week at a time rather than how far I have to go before I reach my goal weight. Patricks parents and sister joined in March, and I was shocked by how thin they looked from when I saw them in April. While we were in Iowa visiting them, I asked my MIL about weight watchers and she inspired me to join. I hope I can have that dramatic of weight loss in 6 months too! Well anyway, thats all for now. I hope I can catch you all in chat soon... I feel so out of the loop! Take Care, Kristen

Hey Sue! Welcome back! Sounds like the trip was just what you needed. I am glad you had the opportunity to see where Shirley and the family is living now, I know how much mums & moms worry when they can't see things for themselves! It sounds like they are doing well, though- so try not to worry, MUM! Talk to you soon, I hope! Kristen

It has been a while since I've blogged, so for anyone who is curious, here is an update in the Kristen/Patrick/Brandon household. At the last blog, we had just taken Patrick in for an evaluation with a neuropsychologist. After five hours of testing the results were of no value IMHO. The doc, who was in his 30's and will probably never be a motivational speaker, told Patrick basically to accept where he is at now as "as recovered as he will ever be" . I hate that some people seem to think that they need to be the ones to set Patrick straight so he can accept his level of recovery. Why does it matter to them if he keeps trying to get better? Why do they care if he is not ready to give up? Why? Anyway... His therapists are now focusing their treatment towards getting Patrick back into work-mode. After a brainstorming session, we are now in the process of doing paperwork so he may volunteer at the hospital. If it works out, I'll let you know. Some other things that has happened over the last few months: Patrick twisted his ankle pretty badly and had to make a trip to the ER 6/10. His ankle swelled so badly that it looked like he had a baseball in his sock. I guess the upside was it happened on his affected side, and other than during the initial injury, he wasn't in very much pain. He actually refused any pain medication prescription. I jokingly told him he should have gotten it and let me have it. *** My mom and stepdad were here over the 4th of July, and we had a great time. We crammed allot in during the 3 days I had with them. One day we spent in Boulder, and while driving, the street I needed to turn on appeared sooner than I anticipated. I could see there was no one behind me, no oncoming traffic, so I just shouted, "HOLD ON!" and made the turn. (It was not a 75 degree turn, it was not so sharp). But anyway, I gave everyone a scare (except me, I knew we were good-lol). My mother has now started reffering to my maneuver as a "Boulder Turn". I will hear about it forever I am sure-lol. *** At the end of the month, we are headed back to Iowa and Illinois for a week or so. We will see the rest of our families and friends, some of which will undoubtedly be for the last time. Patrick's best friend's father has been battling a series of health issues, and this will probably be the last time we get to see him. I am glad that Patrick will get the chance to see him- there were several instances where we had feared we would not. There is no line between family and these friends as far as Patrick is concerned. They are one and the same. I will also get the chance to see my dad and stepmom, as they are driving up from Louisiana the same week I am in Illinois. So many people to see in such a short time! I will need a vacation after this vacation. *** I hope you are all doing well! Kristen

Ross, I am very sorry to hear of your loss. Diane was a neat lady and an inspiration to us all. s She will be missed. Kristen

Thanks All, Driving would give Patrick so much independance not to mention self esteem, and I want it for him almost as much as he does. The biggest factor, which there are several, is the seizure issue. Patrick is in the process of switching from one anti-seizure med to a new one due to break-through seizures. His last seizure was in January, so in Patrick's mind, he is now seizure free. I have tried and tried to get him to understand that until we see how he does on this new med (remember he is not completely off the old one yet), it just isn't safe to take the next step towards driving yet. I have told him everywhich way, including having the doctor explain why he needs to wait, and he just can not understand our reservations. He does get though that I want him to drive too, I just want to take the proper steps to get there. Talk to you all soon, Kristen

Today I took Patrick for an evaluation for an evaluation (yes, I meant to say that twice) with a neuropsychologist. His therapists recommended getting a neuro-psych test done, which they say will give them more in-depth answers to Patrick's cognative and I believe physical abilities. I guess they hope to use the info they learn to focus their attention on what will best help Patrick achieve his personal goals. At $30 an hour, and a minimum of 10+ hours for the actual test, the background info (what we did today) and their recommendations, I hope it is money well spent. The facility where he is getting the testing done also does Bioness therapy, driving evaluations and driving lessons for those with deficits for whatever reason. When I mentioned these services to Patrick, he just beemed. We are already in the paperwork phase of getting into the bioness, and driving is certainly tops on Patrick's TO-DO list. I actually went to get in our new car the other day, and noticed the seat had been moved. I had driven our old car to work that day, and while I was gone he had decided to sit in the drivers seat for the first time to see how it felt. I think he knows better than to try to drive, but I guess I better make sure I take the keys with me when I drive the old car just to keep him and pedestrians safe. Still not feeling so great, but I am trudging along okay. I hope I can be back to 100% soon, as we have a big walk coming up June 2. Another stroke survivor has asked Patrick to participate in a 5k walk/run to benefit Habitat for Humanity. I was thinking I would walk too, but I am scheduled to work that afternoon, so I am trying to determine if I am too out of shape to do a 5K walk in the morning and then work all night. If I don't start feeling better soon, I won't have to worry about it. Take Care Everyone, Kristen

Up and Down. That sums up my life recently, and literally the past few days. For starters, me and my right index finger have been at odds lately. My finger wants to hang around, the rest of me seems determined to see it go. First thing I did to it was slice the tip of it about 1/4" deep with a serrated "bread" knife that was inadvertantly placed in my kitchen drawer. The knife's natural home is safely in it's cardboard sheath in my silverware drawer. The knife was put away by a well intended man in my house in the cooking utensil drawer, patiently lying in wait for my finger. I went rummaging through the drawer and the rest is history. Just as it was almost healed, Oops, I Did it Again. Only this was at work, with a so-called "safety knife". This knife is made for cutting boxes, and has a protective cover over the blade that you are suppose to hold down with your thumb as you cut. As soon as you let go of the cover, it slips back over the blade. This was a brand new one, and it wouldn't open. Short story long (typical me ), when I tried to get the cover off (holding it backwards to pry it open), it snapped open all the sudden and embedded in the side of my almost recooperated index finger. Only this time, I instantly knew there was something WRONG. Almost two weeks later, the wound has healed quite a bit, but the top half of my finger is numb on one side, and the wound area is very sensitive. Not infected-sensitive, raw nerve-kind-of-sensitive. Doctor says there is nothing that can be done except to wait and see what happens. It may get better, it may never. I AM SO STUPID!!!!! And graceful I might add... The literal ups and downs..well... I had been looking forward to my three days off in a row last Thursday, Friday, and Saturday. Thursday was productive, I spent it doing errands and cleaning the house (oh ya, and going to a follow-up for my stupid suicidal finger). I wanted to be able to spend the next two days enjoying my time off, guilt free. Friday started off well, Patrick and I went to Longmont, grabbed some lunch at their local brew-pub, and just enjoyed our afternoon together. We went home, grilled some burgers in the evening, and built a fire in the chimnea that night. Patrick, Brandon, and I roasted a few marshmallows, made some smores, and listened to some Van Morrison on the stereo. I was so excited because I had "scheduled" myself to sleep in Saturday, the first time I could do that in weeks. It was going to be the perfect way to end my last morning off. And then I woke up at 3am. And shortly after that, the "UP"'s began. :yikes: And at 6am, the "Up"'s began again. I didn't have to worry about sleeping in, sleeping was not an option. I was sure that if I looked at my belly that it would look like I was 9 months pregnant. Maybe 10. And if a slimey alien had burst out, well, it wouldn't have shocked me. I was feeling awful all day Saturday, and had another episode of the "Up"'s in the evening. I have not been so sick in...forever? Very weird though, only had the"Up"'s, everything else was fine.Not even a fever. Not sure if it was food poisoning or what, but no one else got ill. I can tell you in all honesty that I don't if I'll ever be able to eat another smore again. Sunday and Monday went pretty well, and I was thankful for the "Down"'s, as everything stayed where it should. Now I am feeling a little queezy again, but nothing like on Saturday. I can handle this...Pray for the "Down"'s please... Kristen

Hey Sue! Glad things went well at camp! It was nice to hear how it all went. I hope you came home feeling a little refreshed and renewed. I am looking forward to chatting with you, you were missed! Kristen PS Ironically, I have been to the last two Tuesday nite caregiver chats...Isn't that just the way it goes!!!

Hey Butch! I have thought about you and Lisa often, wondering how you two have been. I took it as a good sign that you hadn't blogged in like... F O R E V E R .... and I am glad to hear I was right! (ok, I admit, I LOVE to be right ) Anyway, keep giving us updates from time to time, even if you only have time for a few sentences. Have a good one, and don't be a stranger! Kristen

Sue, You have been a wonderful friend to me, and I want to say: Thank you. You have been my mentor, and have stood by me when I felt all alone. You have had the life experiences that I have yet to have, and therefore I can't give you the kind of support I would like to. Who would I be to give advice to the sage??? The friendship you have given to me and others so unselfishly has made a difference in our lives. It can be felt all around the world. Kristen