Page 1 of 2 12 LastLast
Results 1 to 10 of 19

Thread: January chit chat!

  1. #1
    Distinguished Community Member andromeda31's Avatar
    Join Date
    Oct 2006
    Location
    Wisconsin!
    Posts
    664

    Default January chit chat!

    Hi!

    As always, crazy busy at my house! I should really go to sleep, but I am just wide awake now. Too much on my mind. My house is super messy, still have xmas & C's bday stuff laying around in a few piles. WHICH is not too good since the social worker is coming over tomorrow! Yikes! It is worse because we know her, like I feel I should clean even better due to knowing her already. Her husband was an usher in our wedding! Both Brian & I worked with her husband back in the day. I didn't really know her that well and she kindof seemed crabby a lot when I did see her. She has always been nice the few times I have talked to her in a social work context though. Anyway, she had called last week and left a message wondering if she should close Caitlin's case or if there was anything the county could do for us. I talked to my sister to see if she would be interested in being a respite worker for C. She said she would as she is only working part time at her dream job (she just got hired at the VA retirement home-she took the part time job to get her foot in the door and there will be some people retiring soon so she would get first crack at full time then). BTW, she (sister) is a social worker, so that would really look good to have a MSW as our respite person! I called our county SW back and said, no don't close our case and wondered about the respite if we still qualified. She said to start that process again we would have to meet. It worked out well as kids have a half day tomorrow and she would need to see C to make sure she qualified. I am not too worried about that of course. Talking with my sister about caring for C, my sister said that C would be classified as 'heavy care' at the nursing home. She watched C recently and lifted C into bed from her wheelchair and could not believe how heavy C is! She is in shape, but does not lift weights--where I do the opposite-I lift weights but not so much into running.

    So that is a major thing and tonight I came home from a church council meeting and Brian was all upset...some kid punched Tyler in the face at wrestling practice tonight. Ugh. Brian took a picture with his cell phone and showed me. T has a big red mark on his cheek and around his eye looks purple/yellow. Brian sent an email to the guy in charge so we'll see what happens there. It happened when T and the other kids went and got a water break at the bubbler (water fountain for the non-Wisconsin friends!).

    I have an update on the genetic testing...my mom got tested this fall with inconclusive results. She said the lady was going to call me about the results but I haven't heard anything yet. My Mom said they were really keen to test my aunt and that they offered to do it for free. That is a bit unreal! That is as far as I have heard, I keep forgetting to ask if aunt went and had it done. I was even over there at her apartment with both of them on Monday setting up my aunt's internet stuff for her. Of course, you can picture me doing the work with my mom on one side and aunt on the other both talking, lol!

    Still waiting for the new wheelchair seat and bath seat. This whole process started WAAAAAY back in July. Molded for the seat in November. Oh yeah. Every day when I bathe C, I think how nice it would be to not bend over so darn far, especially when I have to lift her out of the tub, heavy and wet. (I do pat her dry with the towel, but can't get everywhere until she is off that chair). Since C is doing so well in physical therapy lately, we are looking into getting her a gait trainer! Our PT called the place that we are waiting for the seats from to see if they would do a loaner to try out before we buy. Haven't heard about that either so they are on my call list for tomorrow. Hopefully I will get answers for all that stuff. I most worry about the wheelchair seat...she will be grown out of it before it even arrives!

    So really nothing too major, just the usual chasing down stuff. Seizures remain pretty well controlled and we have so far escaped any major illnesses this winter! Hope that continues and that y'all are staying healthy too!

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  2. #2
    Distinguished Community Member
    Join Date
    Jan 2009
    Posts
    1,211
    Blog Entries
    17

    Default

    Good news about the gait trainer! I'd like to see how that goes! Why does C need a respite worker??
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  3. #3
    Distinguished Community Member andromeda31's Avatar
    Join Date
    Oct 2006
    Location
    Wisconsin!
    Posts
    664

    Default

    Hi!

    We had qualified for respite a few years ago but never hired anyone. At that time, Logan was so little I would not leave him really so no point in having someone come for respite. Now, boys are older (easier) so if I hire my sister for respite for C, she can come to my house and watch them all and even bring her son along (he is between Brandon & Tyler in age so a playmate to them). This way Brian & I could go on a date once a month. My bday was in October and we still have not gone out to eat for it! We just don't get out alone together, ever. My mom used to say, "oh just hire a teenager", but with C's medical needs along with having to lift her, that is not possible, or if I found a capable teen, I can't imagine what I would have to pay! The going rate around here for just regular babysitting (like a teen watching 2 kids without special needs) is about $5-6 per hr. I sometimes think about putting an ad in that I would be a babysitter! LOL! So, that is why...I think as the boys get older and more involved in stuff it will be a nice thing to have in place as sometimes they have evening stuff that would be hard to take C along to. She goes to bed really early (around 7pm) and needs her sleep. Last yr for Lent we had to help serve supper at church and were required for Brandon's religion class to attend Wednesday worship...it was hard to C to stay up. That is coming up again so I am not sure how I will handle it this year. Maybe have Brian leave church early and take her home perhaps. But anyway, I want to have something in place for those times or if something should ever happen to us medically~ surgeries or something where we would maybe need a helper with her we would not have to scramble to set it up. :)

    The visit went good with the social worker! She was here for 2 hours assessing and talking with me & C. Filled out a bunch of forms and set up a plan, the ball is rolling! We even managed to get the house clean in time, lol! The boys were oh so thrilled to come home and lunchtime and be told after lunch they get to help me clean the house. I did start cleaning before they came home but they are old enough now to do little chores like dust and scrub out the sink, etc. It feels nice to have it tidy for a change, though I know I have the laundry basket of junk from the counter stashed away in my bedroom just waiting to come back out....

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  4. #4
    Distinguished Community Member
    Join Date
    Oct 2006
    Posts
    954
    Blog Entries
    9

    Default

    Oh, Lisa, I hope you get your equipment soon. I was like you - always at the gym and laughing and telling Nick he was my personal trainer! I was so strong from lifting him, but now I am paying the price with my back. I went to an ortho back guy in London and he was a gruff Irishman who said, "Well, what do you expect? You abused your back for years!" He wasn't very sympathetic! Anyhoo, the sooner you can stop lifting and bearing weight, the better. Glad you got the respite going, sounds PERFECT! Your house sounds FUN not messy! Lots of love, x Donna
    Donna, Mum to Natalie (22), ablebodied, kind and beautiful and Nicholas(26), severe CP, non-verbal, tube fed, multiple surgeries, chronic pain, happy kid except when the Liverpool football club or the Ottawa Senators Hockey Team are losing!
    Check out my blog: http://www.donnathomson.com


  5. #5

    Default

    Hi! Nice to read your news and glad everything went well with the social worker. Would be great to have your sister as a respite worker. When I had support hours to help me do my washing etc, I employed my brother and that worked quite well. But now I can do it myself and he's been in Australia, but he's actually coming back on Monday. My dad keeps (half) joking that I need to employ him again for his sake rather than mine because he needs the money lol.

    I'm just procrastinating from writing a 7000 word research paper for a summer school course. Cringe! Due in less than 2 weeks now and still have 5500 words to do. Should really get onto it but just can't be bothered. I have been doing some voluntary work for my local community law centre as part of the course, developing some resources for people on welfare to know their rights etc. It's been quite interesting really. Just hate the essay part! It could lead to some paid work though so I am crossing my fingers...

    Also have an interview for a law tutoring job on Thursday. I have never really had a proper job interview so this will be interesting. If I get it, I will be tutoring classes of 8-12 second year law students for an hour a week, $22/hour plus prep time (two hours or so). So that will be a nice additional income. I am pretty nervous though because I feel like I don't know enough to tutor since I only did the courses myself a couple of years ago! But I guess I can just work through my notes and the textbook if I get stuck.

    Other than that, just plodding along. Been kind of down in the dumps lately because it's sunk in that I am a fully fledged adult now and have to really start budgeting and taking care not to spend too much this university year. I am very lucky to receive a weekly welfare payment but my rent has gone up $25/week and unlike the past two years, I don't have savings from when I lived at home to help me pay my rent, so I will have to be a lot more careful in terms of spending money. I have an appt at the welfare agency on Monday to see if they can give me a supplement to help me cover my living costs which would be really helpful but I hate going there because you're always made to feel like you are a second class citizen and I don't like relying on them for anything more than I need to. It would give me some financial flexibility though so we'll see. If I get that tutoring job, I may not need it anyway.

    I have also been asked to do some disability awareness contract work delivering talks in schools and workplaces, but not sure when that will start or how regular it will be.

    So there are options, just have to wait a bit and stick to a tight budget in the mean time, I guess! Hopefully I can look back this time next year and be earning about 4x what I am now! I really can't wait to be financially independent from any sort of government assistance, though again, I am really grateful I get it.

    Well, enough ranting! Time to go and write something...
    Enjoying the excitements of life. Looking forward to what's to come! What a ride!

  6. #6
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,040
    Blog Entries
    1

    Default

    ((((((Lisa)))))) ~

    So happy for you that the social worker's visit went well, although 2 hours seems like such a long time for that assessment. But forms ~ I know.

    It's good for your boys to help clean the house. Teach them to cook. How to clean a bathroom. How to vacuum. Go for it. Your future daughters-in-law will love you forever! Think of the great gifts you'll get from them on Mother's Day!

    Where are the wheelchair seat and the bath seat?! You and Caitlin need them yesterday. Wow, I see nothing has changed in this field, as we spent months waiting for these things too, back in the 90s. I agree with Donna that the sooner you can get them in place, the better it will be for you when you're our age. It catches up with you. I was completely daft and wore high heels when I worked in the 80s, and I was wearing them, when I lifted my boys out of their chairs and into the car, and their chair into the car and the trunk, then the reverse when we got home every evening. I really, really didn't think about what I was doing to my back then. I was young and fit, and I could do it, so I did. I'm paying for all of that now.

    So, I encourage you to get on those folks and have those seats delivered pronto. You'll be amazed how much better you will feel with the easier lifting.

    Your sister providing respite care for you is wonderful. All the way around. So important for you and Brian to have a date night, to get out and be just a husband and wife, a couple. I'm so happy for you that you have this all worked out now. You need this, probably more than you realize, and with it, you will find that you will feel better.

    It will also be great for Caitlin and your sister. They'll have opportunities to bond as niece and aunt, and Caitlin will have another powerful, compassionate, strong woman role model in her life, along with you. I foresee growth for all of you in this scenario. Very positive vibes.

    I hope that you can get to the bottom of this situation with Tyler being punched in the face, and that the child, who punched him will be reprimanded. I recommend Witch Hazel (with his eye closed of course) doused on a kleenex, paper towel, or gauze, held up to his bruised eye for 15 minutes at a time, or as long as Tyler will tolerate it. That will thin the hemotoma and reduce swelling and bruising.

    As always, you've got your hands full, Lisa, and you are doing a magnificent job of juggling.

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

  7. #7
    Distinguished Community Member
    Join Date
    May 2008
    Posts
    808

    Default

    I see life hasn't slowed down for you... Did you get to the bottom of how Tyler ended up getting punched??? I would be steaming. That's just crazy you haven't gotten the wheelchair and bath seat. How long could that possibly take. I think we got Kathleen's whole wheelchair sooner than that. We ordered a commode for her after her cecostomy surgery and got it the next day. The bath seat should be that easy... Kathleen used a gait trainer for a while after her strokes. It was fantastic. We had a Rifton. She had a boy in her PE class with CP in her class who had I think a Pony one that he wasn't doing well wih so they borrowed Kathleen's Rifton and he did awesome with it. I's a good idea to try a couple out before you purchase it.
    Mary Grace

  8. #8
    Distinguished Community Member
    Join Date
    May 2008
    Posts
    808

    Default

    Lisa, Here's a link to the Rifton Gait trainer.
    http://www.rifton.com/products/gait-...-gait-trainers
    The great thing as they state is you can have as much or as little support as you need. I has a lot of room for growth too.
    Mary Grace

  9. #9

    Default

    CPchick-I so wish and want to employ my brother!! I even went through the whole Pain in the a## process in 09 and got denied for services from the state-sucks.. Any ideas, they said cause I don't need help with showering and such, I don't qualify. But I'd love to employ him to clean and cook for me..As it sounds like you did,

  10. #10
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,040
    Blog Entries
    1

    Default

    ((((((CP Chick)))))) ~

    Best of luck to you on your tutoring job interview. Just try to relax and be yourself, and be confident and believe in your skills. You'll be great.

    When you go to the welfare office, just remember that this is a temporary situation, where you need financial assistance to complete your law degree. And once you've done that, you will be giving back to society with your work as an attorney. Just ignore any feelings of being demeaned, because you know, within yourself, why you are there. Hold your head up high.

    This is the last stretch. Keep on keepin' on! I'm rooting for you!

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

Page 1 of 2 12 LastLast

Similar Threads

  1. OT,, January, Chit Chat
    By Pegakafarmgirl in forum Multiple Sclerosis
    Replies: 93
    Last Post: 01-20-2014, 02:34 PM
  2. OT May Chit Chat
    By Pegakafarmgirl in forum Multiple Sclerosis
    Replies: 72
    Last Post: 05-29-2013, 04:32 PM
  3. OT January Chit Chat 2013
    By Parsi in forum Multiple Sclerosis
    Replies: 82
    Last Post: 02-01-2013, 04:10 PM
  4. OT January Chit Chat thread
    By Gary in forum Multiple Sclerosis
    Replies: 94
    Last Post: 01-12-2013, 10:24 AM
  5. OT May Chit Chat
    By Pegakafarmgirl in forum Multiple Sclerosis
    Replies: 72
    Last Post: 05-30-2012, 06:41 PM

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  


BTC Inc's Disclaimer and Privacy Policy

The material on this site is for information & support purposes only, and is not a substitute for medical advice provided by a licensed health care provider. Always consult your doctor before trying anything that you find online.