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  1. #11
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa)))))) ~

    Hope Caitlin's IEP went well today. Transition planning is very important, and it's great that you are starting it now. I suggest that you begin exploring adult day programs and options for Caitlin post graduation. Also, it might be enlightening to visit out of home residential options, just to know what is available. If there are no suitable programs or residential options for Caitlin, it's good to know that now, so that you can advocate for her needs as an adult to get things in place by the time she needs them.

    It's possible that the definition of legal guardian and conservator might be different from state to state. Perhaps you could do an internet search to find out how Wisconsin views the terms and what the requirements are for each. I didn't conserve my boys, and no one has ever questioned me as the authority in their care. But I am old school, and in today's world, it may be a good idea to have legal documentation. Tami is Tyler's conservator. She's the expert on this topic.

    That's great that Caitlin joined in with the gals at church, and that they were kind and friendly toward her. Inclusion means everything.

    With regard to Jon's clothes, it's not that he has outgrown them. The problem is that it's difficult to put a t shirt on him, with a trache, Gtube, and colostomy bag, and pants with an indwelling catheter. And he has huge stacks of t shirts, sweat shirts, sweat pants, underwear ... all of this is a reminder of what he used to be able to do. It's silly, because I know intellectually that these clothes are taking up space, which we could use for the things he needs now. But removing his clothes is like admitting to myself that he is never going to be able to wear them again. It is like crushing hope. However faint that hope might be, a part of me just wants to cling to it.

    Thank you for explaining piloting for me. I agree with you that computers can become overused, and kids need to be kids. I love to see kids OUTSIDE PLAYING! And, yes, they will need the technology as adults, likely for any kind of job they have, but by then, the technology will be nothing like it is today. So, they may need to keep up with the changes as they happen.

    I have and always will despise DST. It serves no purpose. It doesn't help farmers. It was created during WWI by the Germans as a fuel conserving tool. It has no value, and no meaning to our modern day society. Many people have accidents, heart attacks, illnesses, etc. when we Spring Forward and Fall Back. It is statistically significant enough for DST to be abolished forever.

    Personally, it really messes with my system. I only get about 4 hours of restless, painful sleep per night, so now, I get 3 hours. Thank you DST.

    I have to rush to get out on my walk, while I still feel like it is an hour earlier than my walk time. I need to lay on my back for at least 1/2 hour, with a heating pad, to be able to get up. So, right now, I really hate DST. And I mean, REALLY!

    Guess I'd better grab a for myself and cool down!

    I'll be thinking of you and Caitlin during the lung function testing, and praying that all goes well.

    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.

  2. #12
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    When I spoke with the lady with CP that is from my area, she said there were many really good CBRFs (community based res facilities-group homes) around here. That was nice to hear from someone who knows firsthand. :) I haven't started looking into that in depth yet, but have started to pay more attention to stuff I see in the paper about funding and budgets and stuff. Like the re-opening of A Very Special Place. They have day programs and also respite care and may have full-time placement options eventually. That is where I donated Caitlin's old wheelchair & walker....so I got to see inside when I dropped them off and chatted with the lady who was in charge for a bit. It used to be called Haven of Hope but the board that was in charge of it somehow there was some mismanagement of funds and they closed suddenly (very terrible!) and some of the ladies who had founded that were able to get it to reorganize and reopen under a new name and management. Yay! Because that was a place I had in mind to look into for possible things for Caitlin. One of her classmate's Mom worked there when it was Haven (they all lost their jobs, it really closed like with no notice for anyone, terrible!) and I haven't seen her lately so I don't know if she is working at the new place or if she got a different job in the meantime. There is also in my county, New Hope Center (http://www.newhopeinc.org/) Brian's aunt was one of the founders of this actually! (long time ago, they had a disabled daughter that died at age 4, they live in FL now so they aren't involved anymore). The only thing is that is the opposite direction I go for anything so my ultimate plan is to find something more in Appleton than Chilton for Caitlin someday. I want to be able to be there a LOT so having her be where I do my daily errands would work better.

    Her IEP went great! I didn't have any worries there really so no surprises. She was due for reevaluation next year but I did give the ok to push it off until spring of 8th grade (she is in 6th now) as that would make more sense to do testing then in preparation for transition to high school. Pretty much all the therapists at the IEP have known Caitlin since early childhood class! Unbelievable, but neat! The OT gushed how neat it was to see Caitlin again (the other OT moved up to the high school full time or something so this one is filling in and she was C's first OT when she started early childhood at age 3). And the PT that came, we saw her for private PT when C was 3 after graduating birth to 3. So it was like a reunion, lol! I am glad I have it good with this since I read so often how people have to fight for every little thing. And they all rave about how good of a brother Brandon is to C, they are actually in gym together sometimes (C gets mainstreamed for that and a few other classes-computer, etc) and he comes right over by her and all the other kids are great with her. So nice to hear that! And I see it in the hallways too when I bring her in late after morning PT on Tuesdays, sometimes we get there when the bell rings in between hours and lots of kids say hi to her. :)

    Her appointment Friday went well, we saw pulmonology for the first time ever. Somehow we have a new discipline to meet with. :( She could hardly blow into the test blower thing (love my fancy terminology?). This was not really a surprise to me. The tester guy was like, take a big breath, hold it (briefly) then blow it out. Ugh. Then she tries to do what he is asking and it is even worse. We could see on the computer screen, it graphed it as a line drawing on a chart, something force of breath vs length or something. Hers was a tiny blue circle looking blob. And it didn't get any better when he had her repeat it 3 times. Finally he had her blow on this manual blower that had markings on the side of it that showed how the blowing was going. She did poor on that too. I told him that is as good as she gets for breath, that this was actually the first birthday (in January) that I didn't have to blow her candles out for her. She is a very shallow breather. They did check her O2 before this test (finger test thing) and it was 92% so no worries. Anyway, the test didn't take very long actually but then we waited for the doctor to come in after with the results. I didn't mind as we had our toys (laptop & she had her kindle) to keep busy with. They finally came in and asked a lot of questions about breathing, like if she snored, how she was after previous surgeries, illness frequency, allergies, etc. The good thing is she doesn't need a sleep study before her spine surgery and she is cleared and good to go for that according to what they look at. But we have a followup scheduled with a pulmonologist for 2 months after her spine surgery. Hopefully that does not get to be another regular appointment, though he does come up to Neenah I guess so that would not be too bad (Neenah is 20 min away at the CHW-Fox Valley satellite branch they made for Children's hospital vs driving to Milwaukee 2 hrs away). The doctor said Caitlin's breathing tests were abnormal (surprise surprise!). But not much to be done for it. We did talk about after the surgery, they talked about some of the things they would do to make it easier to keep pneumonia at bay. So it was nice to know ahead of time this stuff. They said some kids have to be intubated for a day or so but they didn't think she would based on the history, so glad!

    Anyway, double whammy this week, had that appointment on Friday and neurology on Wednesday! We will meet our new neurologist. The other one moved to OH so we are taking a gamble and hoping this one is nice too. Wish me luck! Caitlin threw up this afternoon while eating a snack on the couch....I am hoping it was just too much junk food yesterday at Grandma's house, since she otherwise looked & acted fine today. Kids had a random day off of school today. That worked out well since we did dog training yesterday. That involves driving 2 hours to where we bought him from and they practice tracking rabbits and prairie chickens. I was glad Brian packed my boots, it was muddy! I drove Brian, Brandon, Ranger & I, it was a nice day for it! After the rabbit part, I stayed in the van and read my book when I heard him talking with the breeder's wife about the day before the dogs came out with ticks all over, yuck! We had to drive to a different field to do the chicken tracking. It is fun to see him work though (Ranger) and how he acts with the other dogs. His littermate Inga was there and his mom, Britta and another dog from the 'H' litter with his owner (Ranger is from the 'I' litter, his name was Izaac when we got him). He doesn't really get to be around other dogs much at home...one is enough for me for now! :) Ranger has his spring testing in 2 weeks. Brian's Dad is going to drive him there for that since I will be gone for my annual scrapbooking weekend! (that I am totally not ready for)

    Wow, Rose, how do you function on only 4 hours of sleep! Ouch! I had only 4 hours on the night before Caitlin's lung appointment and I was dragging big time. I actually had to take a nap on the way home. We stop and eat at a Culver's (midwest burger chain) half way home and there is a hotel next to it so after eating, we park in the hotel parking lot and I set my cell phone alarm for 20 minutes and lay back and sleep. Caitlin even told me that it was okay if I wanted to take nap, that she had her kindle and would play that and I should sleep, lol! Do you get to take a nap during the day to make up for what you miss at night? I used to do that when the kids were little, nap when they did...

    Don't forget to wear green for St. Patrick's Day tomorrow! :) I have a green workout shirt & a flashing green clover pin so I can get my name entered for a free 6 months at the gym! Fingers crossed!
    Lisa O.


    ha ha, a green Kermit the frog! couldn't find a st. Patrick's day picture
    Last edited by andromeda31; 03-16-2015 at 08:26 PM.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

  3. #13
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    HAPPY ST. PATRICK'S DAY TO ALL!
    Screen Shot 2015-03-16 at 8.44.00 PM.jpg


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

    What a blessing to know that there are safe, caring residential care/group homes in your vicinity. You are quite fortunate in that regard, based upon my knowledge of available out of home placement in our area and state, as well as others (eg., Florida, Georgia ...). I know it's hard to fathom now, but before you know it, Caitlin will be an adult, and it will feel like you just turned around for a moment, and she grew up! So, I encourage you to begin looking at adult programs now, not all at once, but as you can find time (ha ha ... I know) to fit in a visit here or there over the next couple of years.

    Before you start visiting, I recommend making a list of all that you want in place for Caitlin as an adult. What kind of environment should she be in? What level of care do you want for her? Include on that list the things you want to know about any facility, such as: do employees have training, what kind of training do they have, and where do they get that training? Are there background checks on all employees before hiring? Are they under any litigation, or have they been, and for what reason? Ask for a copy of their policies and procedures manual, when you visit.

    I won't bore you with details, but I learned the hard way many times that all that glitters is not gold, particularly in regard to adult day programs and out of home placement settings. And it is best to be prepared, well before Caitlin becomes an adult.

    Another factor to consider might be waiting lists. Some of the better programs, which are in demand, may have waiting lists for new consumers/residents. Even when my boys were Caitlin's age, I knew parents who were placing their children on waiting lists for the best out of home placement program in the County. But, there was only one place. And we have a very large County.

    It is wonderful to hear that Caitlin's IEP went well, and that you are happy with her team and goals. And that Brandon is a great brother, and the other kids at the school treat Caitlin well. Very positive!

    About the pulmonary test ~ Jon has SATS of 96 typically, which is outstanding for most people, let alone someone, who has had pneumonia and intubation 6 times in the last 11 years. But he could never be able to blow into a tube. He just doesn't have that ability. He's never been able to blow out his candles on his birthday cake. Spit on them, yes; blow them out, nope. So, I wonder if blowing requires a certain skill, unrelated to actual lung function.

    It might be handy to have a finger pulse oximeter (available at most drug stores, I think) to check Caitlin's SATS periodically, so that you have a pre-surgery baseline. And then, you have it for post-surgery to ensure that she is maintaining good SATS.

    Thanks for sharing your adventures with Ranger's training. I live around palm trees, so your experience is completely foreign to me. For example, what is mud? (We're in a drought ...)

    Sleep? Well, I've been sleep deprived for 45 years, so I guess I am used to it. Jim naps in the mornings, sometimes dozes off during the day. I don't. Daylight is working shift for me. But none of us is sleeping properly. Jim only had 4 hrs last night. Jon only had 5 1/2 hrs. It's the time change. It happens every time for us.

    I'll be thinking of you and Caitlin tomorrow as you Meet The New Neurologist. Praying this neuro is wonderful in every way.

    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.

  4. #14
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    Trying to go to bed early but failing. :) I loved seeing palm trees when I visited my sister when she lived in Houston. Don't have those here! I would trade mud for a palm tree right now. Ranger is digging in our yard quite a bit. We plan to fence in our mud (garden areas) soon this spring to cut down on that.

    I agree there must be something with making the lips pucker up to blow....she tries so hard but just can't. I think with her CP, her brain just can't coordinate the muscles to do that task easily. I actually was able to view her results on the hospital's online portal. The only bad with that was they did not show what the standard values were but I was able to google a bit and see for one of the results. I think the standard was about like 3.5 liters and hers showed .49. Yup, definitely out of range! I will have to look into getting a finger pulse thing. I am sure they have ones that hook into ipods or stuff now. It would be nice to have for after the surgery in case she has troubles with her lungs.

    New neurologist...she was great! Took a very thorough history, seemed really caring. I got a kick out of her accent, kept saying Cat-lin (short 'a') and I corrected her twice but then gave up. LOL! I liked her. BUT then at the end of the visit when she was talking about when to come back, she said well, you will see Dr. so and so when you next come since I am leaving. :( BUMMER! I don't know if this is the universe telling me that I should go back to Milwaukee or not. I really do not like the drive to Madison much. It is longer, and there is cross traffic on the highway which there is not when I drive to Milwaukee. When I go to Milwaukee, it is all highway (where I can, um, go fast ) and the hospital is right off of the highway exit, super easy. Madison, not only is there the cross traffic, but when you get to town, you have to drive thru town, thru the Capital area and completely thru the UW campus to get to the hospital. The hospital which is a maze and I don't know my way around at all. Milwaukee, we were there so much and I used to explore at night when C would sleep, they have underground tunnels connecting children's to froedtert (adult hospital) and I would walk all around and do stairwells for exercise. I don't know. Those things sound kindof shallow and it isn't the biggest deal driving thru town since I lived there when I went to the UW there for a few semesters. But it is just different in a bad way compared to feeling comfortable in Milwaukee. I guess maybe it took seeing a different place to appreciate where I had gone? I have 6 months to worry about though, not scheduled back until September and the spine surgery will be done by then so then I won't be stressed about that. Going to put it out of my mind for now.

    Been a busy weekend here (of course). Logy had his 7th bday this week. We were planning to have his party today (sunday) but he had a fever Saturday evening. I noticed his cheeks were red and I took his temp, 101.5! No wonder he didn't eat his lunch. :( So I took his temp today and it was normal but he was still congested bad and had sick looking eyes. Had Brandon stay home from church and babysit Logy since Tyler had 1st communion class and I had to teach sunday school (prek-kindergarten) so both Brian & I had to be there. Glad Brandon is old enough! Called all the family and said we were going to cancel the party today. My niece was sick anyway too so that worked out. We are going to play it by ear and if he is good tomorrow, have them over for cake after supper. I had already bought all the food and cake. Poor Logy wanted to see it so I showed it to him since I had it hidden out in the little fridge in the garage. Hoping the other kids don't catch this. The other 2 boys tried to say they didn't feel good but their temps were normal and I made them do their homework anyway, lol!

    Hope your weekend was good!

    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!!

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    Hi Lisa! Oh gosh, it's exhausting reading your posts - you are such a firecracker and so are your boys and Caitlin AND Ranger! Brian too! lol Did you get to have Logy's birthday? I hope the boys didn't find the cake and get into it. I remember one year, I had made hamburgers for Nick's birthday and I'd made 33 patties ready for the grill. When I came inside, they were gone! Yup, you guessed it, Goldie our golden retriever had eaten them ALL! She was down at the beach (we were at the cottage) and she just barfed up the raw beef. My brother joked it looked fine and we should just patty it up again - needless to say we had hot dogs instead! Natalie is younger than Nick and she used to get into the cake but just the icing. It's hard to keep food safe with kids and dogs around!
    We are all well - Nick is good, but he's been having increased seizures and pain lately, so it's off to the pain clinic tomorrow and our neuro appt is April 14. FYI that is my 60th birthday! :) I can't believe I am that old, I don't feel that old! Anyway, I hope we can get on top of the seizures - 13 last night. They are short, but still. The PRN ativan just isn't working, so we're going to ask for another drug. We have a great neuro.
    We're all settled back now after getting home from Cat Island. It's still freezing here - -27 with the wind this morning! Frost bite warnings big time. Everyone up here is so fed up with winter. Rose, if you see this, how is the drought in California? We are seeing your state on the news and I hope you are OK and that the forest fire warnings aren't too bad where you are.
    Lisa, Rose, Mary Grace, Erin and everyone at CN2, I wish you health and happiness in your homes from mine. xo 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


  6. #16
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    ((((((Lisa)))))) ~

    I'm not sure why you'd need a pulse ox to hook into an iPod, etc., since a pulse ox is battery operated. I would think that a finger pulse ox would be adequate for Caitlin and not too expensive. We have a very expensive one for Jon, but his situation necessitates it, given his trache and history of pneumonia.

    When you're in a hospital setting, where a pulse ox/monitor is available, have Caitlin's SATS taken, then use the finger pulse ox immediately to compare for accuracy.

    I wonder whether a Speech Therapist would be able to explain the inability of Caitlin and Jon (and probably lots of others in their boat) to blow out air, or exhale deeply. Michael, who had more lung problems than Jon throughout his life, could whistle! The first time he whistled, like a little tune, he was a toddler. I couldn't believe it! Jon tried to imitate Michael's whistling, but he couldn't blow. Jon was frustrated and kept trying to no avail. I can't recall when Michael stopped whistling, but I have no doubt that it correlated with his unrelenting seizures.

    From what you've said, I think Milwaukee is calling you back. Just an observation.

    HAPPY BIRTHDAY LOGY!!

    Not a fun way to spend a birthday being ill and feverish ... aww ... glad his fever broke, and sending prayers that he's feeling much better, and no one else in the family catches this bug.

    Do try to squeeze in time for rest and sleep, Lisa!

    Here's your Smoothie ~

    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. #17
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    ((((((Donna)))))) ~

    How did Nick's appointment at the pain clinic go today? I prayed that he would find relief through this visit. I'm praying also that his seizures stop. Is there any possibility of having his med levels checked before his 4/14 neuro visit, just in case he needs a dosage adjustment? As I mentioned in my response to your thread, he could be in a hormonal change phase currently, which could affect his utilization of his meds (metabolism, etc.). Just a thought ...

    California's drought is the worst in 1200 years. Experts are telling Californians that we only have 1 year of water left in reserve.

    For a few days last week, it "looked like rain," which means clouds. No rain. We're now being told not to expect any rain until late Fall.

    On our last water bill, the City thanked us for conserving water.

    We don't flush toilets, until we've peed 3 times (I know, but this is what you have to do when you're in a 1200 year drought). Our backyard is dead, because we don't water it. We save the water for the front yard, because that yard is visible. We water our outdoor plants once a week, unless it's 90 degrees for a few days, and then they get a little extra water.

    We bought an HE washing machine, which conserves water and electricity. We never hose down our driveway, patio or sidewalks. Big No No! No car washing. Although Jim did have to hose off our van a few days ago, before going to the store, because it was covered in sawdust. New neighbors have been remodeling for 6 weeks, 6 days a week, 12 hrs/day. Construction zone nightmare for us (noise, mess, etc.).

    I wrote to our Homeowners' Association to complain that our greenbelts and common areas are being watered every day for 30 minutes. I scolded them for wasting water. So far, watering continues. And guess what? Our City relies on Well Water. Bye Bye Water! Sooner than we think ...

    And what is it going to be like for us in a year, when we've run out of water? The land is parched, and if it burns, there will be no water to contain the fires.

    And what is California's number one industry? Agriculture. Yep. Imagine how the drought is affecting our farmers.

    Climate change? We're living it right here in California. And so are you with -23 degrees. It's obvious.

    All we can do is conserve our resources and pray for rain. Lots and lots of rain.

    That's my rant ...

    Many healing prayers for Nick are on their way ~

    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.

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    Lisa, You mentioned helping Caitlin with lip pucker. In speech Kathleen has used whistles and straws to help with this also those party horns. You can make lots of games with this kind of thing too. So happy to hear her IEP went well, No surprises is always good. That's too bad the neurologist is leaving. We went through a few and now we've had the same one for several years. It's not easy starting new there's always so much history to translate. We've had some nice sunny days lately bu ti's still really muddy because the snow is still melting. And oh boy does our dog need a bath! Also a hair cut but unfortunatly he's usually bottom of the list.
    Mary Grace

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