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Thread: February fun!

  1. #1
    Distinguished Community Member andromeda31's Avatar
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    Default February fun!

    Hi!

    'Fun' in both a good and also sarcastic way, lol! We had a nice Valentine's Day this year, everyone mostly healthy. We went to the varsity basketball game that night with the whole family. Tyler performed with the Little Dribblers at halftime. With Caitlin being in a wheelchair, we were right down in the front & center! I said I felt like a movie star at a Lakers game! LOL! She enjoyed being so close to the action and, of course, eating lots of popcorn. We have been battling a nasty cold too, but it didn't turn into anything worse in any of us so I was glad for that. The weather also warmed up a bit this week which is a mood lifter! I also took Caitlin to see Thor 2 last weekend. She is too funny...she says she wants to "kiss him on the lips"! I do have a teenager in the house!

    Our not so 'fun'...I told our wheelchair supplier to cancel the gait trainer as we are working with the school for this. Actually I am just switching to a different vendor, one that will not take forever! I had also asked about our bathchair we ordered....apparently it was 'lost' in the system and I suspect they have not even started the order process on it. Though mysteriously after canceling the gait trainer stuff, the brakes FINALLY came in! We ordered new ones in November due to the old ones being totally rusted out and pretty much non functional in keeping the wheelchair stopped. Yes, 3 months for something kindof essential! Ugh. Anyway so the guy came out this week and installed the new brakes so I am glad for that. Caitlin will also be getting her new AFOs this week, looking forward to that since her old ones developed a crack in the plastic and are a bit warped and don't properly hold her foot position anymore.

    I am also in process of trying to find bigger diapers for C. I contacted the supply company and they sent out a bunch of adult small ones for us to try, 4 different brands. They were HUGE! Way too big. I did try them on her at night to see, they were so overly big that they would never work for daytime when she would be sitting up. She currently wears Luvs size 6 which is the biggest kid size. An online friend sent me 2 size 7 pampers that they use. They actually were the same size as the luvs 6 but the tabs were a bit stretchier and longer so I think I am going to contact the supply company and ask for those. They do sell those so it should be all good. I wasn't able to make many 'medical' phone calls this week as I had Tyler home sick for 2 days. I have had only one week since before Christmas where everyone went to school for 5 days in a row...and that was the week I got the cold! I have been spending my time caring for the sickies and then trying to catch up from undone things. Hoping for a change in weather soon so I can open a window and let some fresh air in. This week is shot already too...kids have half day on Thursday and all day off on Friday. Time to get my butt down to the basement and get a workout in. Hope you all have a good weekend!

    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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    So glad your family had a nice Valentines Day!! Sounds like a lot of fun.Our valentines Day was spent mostly shoveling, we got about 2 feet of snow. Caitlin sure is growing into a teen. We went to a girls basketball game over our break last week and Kathleen had fun, she loves sports.
    That's great that the process for the gait trainer won't take forever. Have you been able to test any out? We did when Kathleen got hers and it was very helpful we ended up with a Rifton. I hope your bath chair finally get there. Don't you just hate to have to check and recheck everything to get it done.
    Kathleen has always worn something for incontinence, starting with diapers, pull ups, and then the night time pull ups came in a bigger size. We never had any luck with the larger diapers they were either too small or WAY to big ridiculously so. What we went to after she outgrew all the kids pull ups was an adult poise pad. The longest and most absorbant we could get. It was great because she could wear panties and it was easy to change. No taking off clothes to change it. If you go online you can get some different ones to try from different companies. Good luck with everything... I hope everyone stays healthy!
    Mary Grace

  3. #3
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa)))))) ~

    How well I relate to the diaper dilemma. My boys needed Depends, before Depends were invented. I used to cut two of the largest sized toddler diapers and tape them together to expand them to fit my boys. That was back in the covered wagon days of yore.

    For an idea of available incontinence solutions, I recommend browsing http://www.hdis.com For many years, I ordered Depends from HDIS. Now we order the breathable underpads, because Medi-Cal will not pay for them. They are very nice folks at HDIS, so don't hesitate to call them, tell them about Caitlin, and see if they have a recommendation.

    The bathchair is lost in the System? Well, whose fault is that, I wonder? I think people who work in the DME business should be trained on every piece of equipment they sell by having to depend upon that equipment for a few days. For example, put a doll (a heavy doll) in a bathtub, then try bathing the doll without a decent bathchair. I'll bet you'd have your bathchair pronto if they had to do that themselves.

    It just perturbs me that you, me, we, all have to wait for vitally needed equipment and supplies for our kids. Our kids suffer. We suffer. They make a profit, regardless, so what is the dadgum delay here?!

    Like wheelchair brakes! For crying out loud! That's the most important safety feature on a wheelchair! I wonder whether the vendor has considered how to get out of a law suit, if an accident occurred to someone waiting for brakes to replace rusted, ineffective brakes. What kind of defense would the vendor have to stalling for 3 months to do something so basic and simple as install new brakes?

    Also, I would lay odds that your husband (or you) could replace those brakes. It's just a matter of having the right tools, an Allen wrench perhaps. And the new brakes. I know that Jim has fixed the brakes on quite a few of Jon's & Michael's wheelchairs, and even I replaced the brakes once on one of Jon's chairs. We also used to adjust the brakes to keep them tight to the wheel, but not too tight. So, I recommend that you check out the brakes, and see how they are fastened, then find the dealer of the wheelchair, and order the brakes directly and install them yourselves, should you ever need new brakes again.

    Hope the new AFOs work perfectly. Seems you're getting the year off to a good start. Now if we could only get you that bath chair and gait trainer like yesterday! Want me to call them for you?

    Healing prayers that you all recover from your colds quickly, and that no other bugs rear their heads. Nearly through cold/flu/virus season. Be 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.

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

    I talked to our diaper supply company the other day....we have to go thru (J & B Medical Supply with her state insurance)...they are actually always very nice when I have had to call them. The diapers are the only thing we get from them. The lady I spoke with seemed to know a little more than the other lady I worked with so I have some more samples coming to evaluate. They sound like they will be a better fit though, Caitlin has a 19" waist and she will be right in the middle of the size range listed. The adult ones were for 20" to 35" waists! I swear I could have worn them! LOL! The Poise pads sound nice...I did ask about a liner that I can add into the diaper. I forgot to call the nurse back yesterday though (was busy doing taxes, more fun!, lol) so I am going to call her this morning. Apparently you have to have a nurse at the company do an evaluation to get the liners....I am not worried though. School does not change her enough (which is another problem!). Her IEP is soon so I plan to request that it be written in the plan that she gets changed after lunch daily. She has been coming home soaking wet and with the same diaper I sent her in...I am particular about how I fasten the tabs and I know that it has not been opened by the way they are. I went thru this at the elementary level and I guess with changing over to a new size diaper this will work well to handle in the same way. At the old school, I would give them diapers for changing and then I would send her in a pullup (when we still used those) so I knew for sure if she got changed. As soon as I get the new diapers, I will keep those for at home (and send her to school in them) and then give the old luvs to school so I will know for certain that she gets changed. Hate playing games, but I guess that is how it goes! I said to her PT, I think because there are so many in the class that are more severely disabled (requiring suction, or worse behavior, or nonverbal) that she is a little more 'easier' so she gets forgotten with some of that stuff.

    Yes, it is definitely crazy to wait so long for brakes...the thing with ours were they were 6 years old and the nuts/bolts were actually rusted out beyond repair or I would have been able to tighten on my own. I just am not loving the service of the company that we have been using for this stuff (company N). I still have not heard about the bath chair. I haven't heard about the walker with the new company (company T) yet...company T did our very first walker (the Pony walker we had when Caitlin was a toddler) though so I think once all the stuff gets sent to them, they will move quickly on it. I am not sure if our PT sent it to them yet...she will be having surgery on her eardrum next week so she will be out for 2 weeks. I think it is the Rifton one that Caitlin has been using during therapy though. It is so snowy and cold that I don't mind waiting too much...nowhere to use it right now!

    We did get the new AFOs last night! They are so much taller! I can really see how much Caitlin has grown comparing the new ones to the old ones. I found one pair of shoes in her closet that fits (thank God!!)...it is too cold to go without shoes! They have a half day today and no school tomorrow (inservice or something) so we are going to head to the shoe store and shop! Always a treat to drag 4 kids to the store, lol! It will work out ok since I think Brandon can use a new pair of tennis too. I am hoping they have the same pair of black mary janes that we always buy. It is from Payless....they have a brand called Smart Fit that are just really wide and they also have them in wide sizes so I get those for Caitlin....they slide right over the AFO and cost like only $15! Much much better than getting the special Hatchback brand we used to buy. They look cute too! I think I should be able to bribe the boys to behave though since the Payless is in the same strip mall as a Game Stop (used video game store)...they have been asking to go there. We'll see how that goes. Time to go fiddle with my taxes more...I e-filed them on the irs website but was not able to print out a hard copy (or save an electronic copy) and I need to get an electronic copy to e-file on the state website for state taxes. I have 2 hours until the kids come home from their half day.... :)

    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!!

  5. #5
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa)))))) ~

    Why does a nurse have to evaluate Caitlin in order for Caitlin to receive liners? I just think that's ridiculous. For crying out loud, C is 13 years old and wearing diapers! Isn't that sufficient justification for liners? The hoops these places make us jump through really irritate me! It's as if they think Caitlin doesn't really need liners, and you're going to stockpile them and sell them on the black market.

    Every student in Caitlin's classroom is entitled to the level of care they need, without exclusion. Children with greater needs demanding more attention is a poor excuse for neglecting Caitlin's needs. That's why every student has an Individual plan.

    It's uncomfortable and unhealthy to sit in a saturated diaper, especially for hours. Skin irritation and breakdown and infections can occur from sitting/laying in a wet/soiled diaper.

    Definitely insist on a diaper change or two in Caitlin's IEP. If she has a routine of peeing at particular times, then put it in the IEP that her diaper will be checked every day at X and X times. Also, insist that the teacher or aide chart Caitlin's pees and diaper changes, and reports it to you daily in a log that you can send back and forth in Caitlin's backpack. You can justify that by stating that you want to keep track of Caitlin's urinary output and pattern, so you can be on the alert for any changes. And she's a teen, so changes are in store. And she will begin menstruating, and they will have to change her diaper, liner, napkin, whatever at school too. It's a good time now to set up a system and carry it out through her remaining school years.

    Michael's school used to like to use the excuse that he was dry when he got on the bus. Yeah, like I can't tell the difference in volume between a recent pee of 1 hour and two or three pees over an entire day.

    Just remember that the school personnel work for you, and you are the Team Leader and the Boss of all things Caitlin. Your daughter's needs gave them a job, and your taxes pay their salaries. And you shouldn't have to send a different kind of diaper to determine whether they are doing their job for your daughter. It's a brilliant idea, of course, but you shouldn't have to do it.

    Get it in the IEP, be specific, and get a notebook as a log, to transfer to and from school and you, recording Caitlin's pees and diaper changes. If that doesn't work, then you've got an issue on your hands and the IEP to back it up. I know you don't like to make waves, so with this in the IEP, it should ensure that you won't have to make waves.

    Maybe you need to call these companies every few days and remind them about the bath chair and the walker. Squeaky wheel. And 6 years for new brakes is just wrong. Hope the new AFOs work well.

    When you finish your taxes, would you do ours? This is about the time of year when I begin saying, I'm going to get started on the taxes, and the week before they're due, I start the taxes. Every.Year.

    Keep us updated on the diapers and the equipment. Man, you have your hands full, Sister Friend!

    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.

  6. #6
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    It was funny for the evaluation....I sat on hold for about 30 minutes and when I finally talked to a nurse, it took about 30 seconds for the 'eval'. She asked if Caitlin had a long bus ride home, I said, oh yes! That pretty much was the qualifier to get liners! Samples are coming our way now to see what works best. Our youth diaper samples came the other day which works great. Kids had off all day Friday so I have been putting them on her to test them. So far, I like the tranquility slimline ones the best. They have the interior 'ruffle' that catches the liquid poo, the other 2 samples did not have that. They also have a yellow line down the front that turns blue when they are wet. I think that is an awesome feature! C had a poop while wearing it so it really got tested! :) It worked great! I am happy that we like one! I didn't mind the hold so much, I just put my phone on speaker and do stuff on my computer while I wait. Could be worse! Now I just need to work up my nerve to talk to school about the diapering...I just hate confrontation! Once I get it over with I will feel better and hopefully things will change for the better. I will try the keeping track of it angle, makes it less about their failing then... :)

    I plan to call about the bath chair again on Monday...this week was a bit crazy with taxes and kids off of school. It was good they had off though. Caitlin was a bit off lately, some things looked not quite right with her. She has been tipping her head to the left lately, not something she usually does and a few times she said her eyes hurt. Yesterday she said her ears hurt so I brought her in...sinus infection. Which was what I thought it might be so she is now on antibiotics to clear that up. I am glad, it explains the things I have been seeing...and something easily fixed.

    Yeah, I hate doing the taxes too, now I know why I usually pay someone! Ours aren't that complicated and most of it I could just look at last years at what goes where. The big pain was trying to get a print out! I still couldn't get it to print out (and I am able to print out other things so it isn't on my end)...I ended up going to the irs website and filling it out on a fillable form and printing it out that way. A big pain but I need to have a copy of it to do my state tax return. We always overwithhold so I ready to get our money back.

    I do have something good going on...going to see Wicked tonight with my mom & sister. Our Dad bought us a gift certificate last Christmas to the PAC (Performing arts center) and we finally could agree on a show. Going to go out to eat before so it will really be a nice night out. And we did go shoe shopping yesterday, found 2 pairs of shoes to fit over her AFOs...spent only $12! Yay! The ones I really wanted (the black ones) they didn't have, but some of their other stores do so I will just go pick them up when the kids go back to school. I bought her a pair of tennis shoes, white with black & pink accents and a pair of pink crocs for the summer. This is a pic of her new & old AFOs...amazing the difference in size, how much taller she has grown over one year!

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

  7. #7
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Lisa)))))) ~

    Great that you found the Tranquility Slimline to work for Caitlin! There are so many incontinence products on the market today. I knew something was bound to work for Caitlin.

    The Evaluation: laughable! They could save the money on paying an RN to ask you that question by sending you a form to complete and return to them. On the form, they could ask: Does she have a long bus ride? You check "Yes." Send it back. Or email! Really, the useless redundancy in our governmental agencies is astonishing.

    When my boys were babies, they wore cloth diapers. That's how old we are!

    You don't have to have a confrontation with the school folks about the diapers. You can begin now by letting them know that you're setting up this system, whereby they chart in a log (just get a notebook to use) every day: the time they check her diapers, and the time they change her diapers. Say that you want to start keeping track of her urinary output, which is true. You might mention that you intend to have it written into Caitlin's IEP, so that they know you are really serious.

    Ask them then to include the log in Caitlin's backpack at the end of the school day, so that you will have the record of the times she peed and had her diaper changed. And you can note "Thanks!" on the log and send it back the next day, along with 2 diapers. Your idea of sending a different kind of diaper for them to use is brilliant, as I said, and initially, you should do that. Once you feel confident that they are in the routine of changing her diaper, then you can send the Tranquility ones.

    You aren't being confrontational or demanding to expect the school to change Caitlin's diaper. You are the Team Leader, and you are leading the team in doing what is best for Caitlin. And, if you don't bring it up, they will continue to not change her diaper, which isn't in her best interests. It's not about you or them. It's about Caitlin.

    My guess is that when you initiate this regimen, they will comply out of guilt, because they know doggone well that they haven't been changing Caitlin's diapers. And believe it or not, that is violating the law.

    If the teacher and aides are unable to meet all of the needs of their students, then the district needs to hire more aides for the classroom. One on one aides for those, who have serious medical issues. And the district cannot deny the provision of those aides by crying that it doesn't have the budgetary ability to meet the students' needs. The law requires that they do it.

    I'm sorry, but also relieved, that Caitlin has a sinus infection, and I hope the antibiotics kick in quickly.

    Hope you had a wonderful Girls Night Out with your mom and sister! Tell us all about it!

    And, yikes! Caitlin really has sprouted up! That's amazing!

    Keep us posted!

    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.

  8. #8
    Distinguished Community Member andromeda31's Avatar
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    Hi!

    The show was AWESOME! That was the first time I went there for a night show....how bad this is- the PAC turned 10 yrs old this year and this was the first show I went to! I have gone there for school field trips as a chaperone so I have been inside before, but it is different going a night. This was a Christmas present from our Dad last Christmas (and we finally used it)...this Christmas he gave my sister, Mom & I a gift card to a nice restaurant so we went to dinner first. It was delicious! I had pecan encrusted chicken with couscous and a bruschetta appetizer. My sister & I shared a chocolate cake slice for dessert. We had a table that had a view of the river which was nice. The restaurant is down in the flats which is this area right on the water downtown. I totally overate so it felt like I had a brick sitting in my stomach, lol. We had an hour before the show started so we drove to Kohl's and walked around until it was time to go to the show. The music was great! I can't imagine singing so well! We had nosebleed seats, but we were right in the center and it was kindof nice as the seats were stadium style that high up so didn't have to worry about tall people sitting in front of us. It was so nice to dress up and go out! It is few & far between...opportunities to do that, but I sure enjoy it when I can! :)

    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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