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Thread: SS disability for kids?

  1. #31
    Join Date
    Jan 2006
    Posts
    78
    Hi, Flowerpower
    I accidently posted a suggestion for your son's birthday under the wrong listing please check under "walkathon for scoliosis" I think is where I put it.

  2. #32
    Join Date
    Jan 2006
    Posts
    78
    Yeah I know what you are saying and yes it is a "mom thing"! I have the same problem every year for my son's birthday what should we do? Since my son is severely handicapped it really makes it hard to come up w/ something he can enjoy. I took him to Monsters Inc. on ice for his birthday last month and he seemed to like it! I can understand why you want to do something special for him he has been through alot! But he may not be ready yet maybe next year when he is more active and there are no restrictions anymore you can plan an activity somewhere. This year use the extra money to splurge on his gift, perhaps!

  3. #33
    Join Date
    Jan 2006
    Location
    PA
    Posts
    778
    Thanks for the suggestions Renee. She loves miniature golf, so that might work; a trip to the beauty salon-NO WAY!! lol (she isn't a "girlie girlie"); Hard Rock Cafe and Rain Forest Cafe are two of our favorite restaurants (she turned me down on the Hard Rock in Philly or Baltimore). So, you had some great ideas, but she's shot me down on some of them.

    Jamie's 13th birthday was easy....we took a bunch of friends to the mountains where they slept in a tent, played in the pond, and rode our 4-wheeler. It rained the whole time, but since it was August, they still had a great time! And as her gift we traveled to King of Prussia mall (about an hour away) and did some back to school shopping.

    Your situation is tougher because of Joe's restrictions. What kind of parties have there been for his friends lately? I'd suggest a sleep-over, but knowing the boys, there would be a wrestling match or two and that would not be good for Joe! How about a party at a local arcade? Well, I'm out of ideas for now. Talk to you soon.

    Mary Lou

  4. #34
    Join Date
    May 2005
    Posts
    672
    Hi Mary Lou,

    Thanks for the suggestions, you gave me an idea on going to our local mountains and having a sleepover, Joe loves to fish (though I don't think any of his friends ever have so that would be interesting). The boys around here are into laser tag or combatting with airsoft pistols in the local hills; will have to check with Joe's dr. before letting him run around doing that.

    Oh, I just thought of another suggestion for you - roller or ice skating?

    Hope all is well with you, I think/hope/pray we have gotten over the flu bug here. This is the first time in weeks no one has been home sick. Well, stay healthy everyone and have a great day!

    Renee

  5. #35
    Join Date
    May 2005
    Posts
    672

    Update on MediCal issue

    Well, this is what ended up happening: we were denied 100% MediCal coverage but are eligible to receive emergency benefits for the month of Joe's surgery. This will help immensely! Joe is also covered by CCS for this year (for anything related to his scoliosis). Just wanted to mention this in case there is a CA person in a similar situation. Once you start looking into it, there are quite a few programs that may offer assistance.

    Renee

  6. #36
    Join Date
    Dec 2005
    Posts
    40
    Yeah, so glad you got some benefits and got CCS! I keep thinking i was suppose to get Renee some info and just been so busy haven't had much time. Sorry about that but sounds like all worked out well.

    I see you mentioned that CCS will cover expenses only realted to his scoliosis and that is true but wanted you to be aware that some stuff the Dr office may not think is related to scoli really is. For instance, in our situation it was the Pulmonary Dr Cole now goes to. At first they said would not cover with CCS (actually now that think of it, it was CCS not Dr office that said not related) but when I explained in detail how it most definitely is related they changed it and authorized payment to Pulmonary visits. The only reason Cole has asthma and respiratory issues is because of the severe scoliosis and also stomache problems periodically. Tho I have not been back to a pediatric gastro Dr since got the CCS coverage but if have to will go to CHOC (childrens Hosp Orange County) where they have CCS paneled Drs and will cover it. He was going to a Ped Gastro that no longer accepts CCS payments so even tho I like her I will switch as cant afford anymore expenses. Plus CHOC has wonderful Drs and I am sure i will find another good one.

    OK Renee, I rambled enough-Again so glad to hear your good news and hope the info I shared today helps somewhat. If you come upon any questions in future regarding this let me know and I will try to help.
    Stacey
    Cole's mom
    (southern CA)

  7. #37
    Join Date
    May 2005
    Posts
    672
    Hi Stacey,

    Thanks for passing along info-it is very helpful when you have an idea of what to expect. I can see already that even with the MediCal there still may be some trouble getting things paid off. I spoke with the company that did the spinal monitoring during Joe's surgery and they said they are having trouble getting our insurance to pay more for that. The company charges by the hour and our insurance only wants to pay for a (small) portion of each hour. Then they said that MediCal always denies them reimbursement so I can see things may not go as smoothly as hoped. If I'm lucky (cross my fingers, knock on wood) I should get reimbursement for some of the charges I have paid so far, which will directly go to help cover the expense of my younger childs recent weekend hospital stay. This may all work out even somehow! At least that's the best I can hope for...how's everything with you and Cole? Hope he enjoyed his recent birthday celebration. Well, got to go - take care and talk to ya later!

    Renee

  8. #38
    Join Date
    Dec 2005
    Posts
    40
    Hi Renee
    Good luck with the reimbursements and getting stuff paid. I still get bills and continue to have to call even tho have called before on some stuff that CCS will cover but they usually are good about taking info and billing CCS. I have some I need to call on next wk actually.
    Sorry to hear of your other child being hospitalized also, I hope all is well with that now and wont have mounting medical bills for that too. I can totally relate to the medical bills situation-sucks! I cant wait to get these payments done for Oct 04 and May 05 surgeries and then hopefully not have anymore for awhile since the last surgery CCS will cover balance. (knock on wood like you said-LOL).
    Cole is doing real good, seemed to recently start getting the respiratory infection but I upped his meds and he never got it full blown-thank goodness! I on the other hand did and still coughing for a wk now. yuk!

    We go back to Ortho in July so will see then where we are at and if need another expansion tho I think the next will have to be a replacement as the xrays the Dr showed us at post op appt showed not much left to be expanded on rod. Replacment not looking forward as will be bigger surgery but better then fusing at this age. Oh BTW-I still haven't seen your Dr in San Diego as wanted to wait until this summer so did not miss school. I need to call next wk and make the new appt. Ihave most of the xrays and info on CD tho s/b getting more medical records copies soon as just paid for them and sent it back to get my copies. That will all work out good as other appt would not have had any info for Dr so this will be good.

    Ok talk to ya later!
    Stacey

  9. #39
    Join Date
    May 2005
    Posts
    672
    Hi Stacey,

    I'm glad Cole is doing well and avoided this awful resp. infection. Like you, I am going on week 2 trying to get over this. Started out as a bad sinus infection now has moved to throat/chest. I have been nursing everyone else since about Oct. someone has been sick just about every week. The family has had every strep, flu, cold, etc. that has come around except me, I stayed healthy until now. Just so worn out I guess...

    I hope replacement surgery for Cole can be put off for a while longer though like you said, its better than fusing. We are due to see Dr. Newton again around mid-June. Let me know if you end up scheduling an appt. with him - I think you will really like him. He will give you as much time as you need and will thoroughly answer all your questions. Take care and keep in touch -

    Renee

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