Page 2 of 2 FirstFirst 12
Results 11 to 14 of 14

Thread: Going up!

  1. #11
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,037
    Blog Entries
    1

    Default

    ((((((Lisa))))))

    Good news that Caitlin likes yogurt! Very good for the digestive system. That's great that you've found another food to disguise meds and vitamins.

    Ten Lunchables for $10 is a hard to resist deal, especially with 4 children.

    ((((((Mary Grace))))))

    Kathleen's lunches sound tasty and healthy. There are some really nutritious chips out there. We like the "Late July" brand. Their Summertime Blues corn chips are made with corn, chia, flax, and other tasty morsels. They make great cookies and crackers too. http://www.latejuly.com And I love hummus!

    Two more weeks until school starts, ladies. Enjoy them!

    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
    Join Date
    May 2008
    Posts
    808

    Default

    Lisa the glasses have been great for Kathleen! I'm pretty sure they were affordable also. Kathleen used to love the nacho's lunchable and it would be a treat every Friday. Until she had to go gluten free.
    Rose, Kathleen loves to eat and she eats very healthy always has. One year for school she took a toss salad everyday. she still loves salad and I can put anything in it eggs ,chicken, beans, flax, she'll eat it all. The one thing she claims she doesn't like is olives. Her brother teases her and asks her "let's go to the Olive Garden" she just says eeewwww! We absolutely love the Late July chips. I didn't know they made other stuff I'll have to check it out. The chips and crackers she eats are healthier than most breads. Gluten free for her has been a very healthy diet mostly because I'm forced to keep to as many whole foods as possible and single or very few ingredients. I can't believe the long list of ingredients in some things. It just doesn't have to be that way... very enlightening...
    Mary Grace

  3. #13
    Distinguished Community Member andromeda31's Avatar
    Join Date
    Oct 2006
    Location
    Wisconsin!
    Posts
    664

    Default

    Hi!

    Yes, the nachos is the favorite of all my kids too! Here is a morning update from me (vs the late night ones I usually do!). We are trying to get up at the regular school time this week to adjust a little bit. Oh how I really wanted to stay in bed this morning!!

    Caitlin is doing well with the increase in felbatol. I still have seen a few things that looked like drops and there has been some staring but I am going to wait and see how she does with getting up earlier and getting meds in a more timely fashion. With sleeping in and all the goofy schedules we have been keeping the timing has been really off.

    Brandon got his palate expander yesterday. The slurping is AWFUL! Even Caitlin keeps saying to him to stop doing that noise! Friends with kids that had one have told me it stops after a few days. Right now he is a liquid diet for a few days. I didn't really think about that but I am a smoothie queen so I made him a nice breakfast one today and he said he was full so it will work out. According to different websites I read, he should be back to normal eating in a few days. I am so glad I had this done before school starts so he has time to adjust. He is a little worried about getting teased at school for the slurping but we looked up different stuff about it and found a blog done by an 8 yr old boy that talked about getting one of these and that reassured us that all this will pass. He has to have it for 6-8 months. I don't remember my sister having issues with eating when she had hers so we just have to wait.

    We have open house at the middle school tonight for Caitlin & Brandon. I am excited to get the school supplies out of my bedroom! We will meet their teachers and drop off the supplies and find their lockers and all that so they will be ready to go next week. One bad thing is I received our yellow cards from the bus company yesterday. Oh you should have seen the steam coming out of my ears when I saw Caitlin's times! 6:27am pickup/4:40pm dropoff. School hrs are 7:45am/3:10pm. Oh yeah. So she would be on the bus for 1hr 18min (78m) in the AM/1hr 30min (90m) in the PM!!! I put in a call to the spec ed director and left a voice mail (polite as they have nothing to do with the bus routes). I also looked up the district policy as I had been told in the past it was to be no longer than 1hr on the bus each way. We are the largest (area wise) district in the state so there is a lot of bussing of kids. BUT, we are also only 7 miles from the middle school so those are some ridiculous times for sure!! I found the official policy online and it said 75 min. So it definitely violated the official policy so I did have a leg to stand on to complain. I also called bus company and left a voice mail. Well, spec ed dir called me back within an hour and we had a nice discussion. He is very nice and I know him from the special ed PAC group there used to be and from IEP mtgs and such. He was shocked when I told him the times she was assigned. He is going to contact bus co on my behalf and see if that was a mistake (I know it is not as they try that every yr) and what can be done to make it better. This is the first yr I called him to get involved though. I figured he would have more pull than I to get a change made. Last yr her times were 6:55am/3:45pm which I was okay with. He also said that they could also have KidsCab transport her or that they could reimburse me for mileage if I wanted to drive her. I said I would consider about those possibilities while he worked with bus co. I did say to him also that I really was most concerned about the afternoon time as I bring Caitlin already 3 days a week to school after her early morning appts (which I schedule that way to avoid long AM bus ride) and that if I had to compromise on morning time to get a better dropoff time that is the way I would prefer. He said it might take a few days to hear from him, but I feel so much better that he is handling it. I talked to Brian when he got home from work and by then I had thought about it some. I thought, well if I could get reimbursed, I would just take her every day to school...but that I would prefer KidsCab (if a bus time can't be worked out) to bring her home. I had told sped dir that in the afternoon, I have 2 other busses coming home (with the 3 boys) that I need to be home for those. But I think if I brought her in the AM (plus then she could sleep in later on days w/o appts), and she is transported home somehow in the afternoon, that would work out really great. We'll see what gets worked out!

    It's been too hot to go to the zoo so that might just get postponed indefinitely. We've been so busy with other stuff and I never told the kids about it (so glad!!) so there isn't any whining about it at least. Hope everyone else is well!! :) I am going to try to go to yoga at the gym today. I have been slacking off on working out and it is starting to show.

    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. #14
    Distinguished Community Member Earth Mother 2 Angels's Avatar
    Join Date
    Oct 2006
    Posts
    3,037
    Blog Entries
    1

    Default

    ((((((Lisa))))))

    Poor Brandon! I hope the slurping ends soon and he can begin enjoying food. But smoothies are wonderful!

    Glad to hear the Felbatol increase is going well, and I hope the seizures abate, once your routine becomes established.

    6:27 a.m. to 4:40 p.m. is a long day for anyone! That's not acceptable. It sounds like the district needs more buses and drivers to accommodate the size of the district. Unless things have changed, transportation is a part of the IEP. No child should ride a bus for 75 minutes!

    When my boys were in school, the county had a contract breach with the bus company. The buses they sent out during that negotiation period were broken down, covered with gang graffiti, and driven by rather unsavory people. I went to the media and raised a stink. Jon was enrolled in a city program, so he was unaffected. I transported Michael to and from school daily, with no offers of reimbursement from the county. And I was under a time constraint to be home in time to meet Jon's bus, or to pick Jon up, which would mean that he'd miss a part of his day, since his program ran an hour longer than Michael's program.

    When the new bus company was in place, Michael's pick up time was before sunrise. We live 8 miles from his school. That meant that I had to wake Michael at o'dark thirty, bathe and dress him, put him in his chair, shovel oatmeal and juice down him, and haul his buns out to the bus within 2 minutes of arrival, because these buses did not wait. Nor were they allowed to honk (disturbs neighbors). If Michael seized, then the bus left without him, and he either stayed home or I took him in to school later in the morning. Fortunately during this time, I wasn't working outside of the home any longer.

    I filed a discrimination complaint against the county and the school district. The basis: Regular ed children in my neighborhood gathered at a reasonable time, 7:45 a.m. for their bus to deliver them to school by 8:00 a.m. Why was my son on a bus for over an hour, forced to get up before dawn, and arriving at school 1/2 hour earlier than the school day start time?

    With that, an extra bus and driver appeared to pick Michael up at whatever time I designated, and who was instructed to wait until Michael was ready to come out to the bus.

    I advocated for Michael's friend, B, to be picked up by the same bus and driver, after Michael, as he too had seizures, and his mom was single, like me.

    Who was that driver, who was told, "Just go up there, pick up her kid, do whatever she wants, and make her happy?"

    My husband, Jim.

    That's how we met.

    Back to you ~ I'm glad that you have connections with the sp ed director, and I hope that he makes the necessary adjustments to accommodate Caitlin's transportation needs. It's just a shame that you have to pursue this change for a common sense transportation schedule. It should always be about meeting the students' needs, and never about suiting the district's interests.

    I've noticed that it's blazing in your neck of the woods, so sorry you can't take the zoo trip. Hope you got in a good workout today.

    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 2 of 2 FirstFirst 12

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.