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Moving.
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Thread: Moving.

  1. #1
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    Moving.

    Okay experts what am I missing "to do" as I try to get things in order. Things I can do from afar.
    - contact schools
    - research respite services
    - home health care(supplies, mostly diapers) and home health with nursing options
    - new pharmacy with compounding capabilities
    - waivers/insurance info
    - support networks
    - medical records faxed
    - find local pediatrician and dental
    - audiologist near new home
    - parks and rec services forspecial needs
    - found all Jacks health foods and supplement stores nearby
    - church with a whoe page dedicated to raising children with special needs(2 good 2 b true)
    - somewhere for me to do yoga
    - found community beach has special needs night every Sunday, figured we would do ths right away so I can the connections right away
    - local orthotist [ haven't found but just thought ]

    Anything else???? I have not moved for 16 years so I'm sure I'm not thinking of stuff. ??

    Thanks!!!!!
    Jamie, mother to Jack (MPS II)

    www.heresjack.com
    www.savejack.ca

  2. #2
    Wow, you continue to amaze me! You are on superhuman strength and vision right now Jamie, I love it! How about the common flight schedule to Nashville, I think that might be a helpful thing to know.... :-)
    Melissa, Mom to Tyson (9), Brock (7), and Case (6) - MPS II
    Ebook: Calmer: Medical Events with Cognitively Impaired Children
    SavingCase | Twitter | Facebook

    ~ The effectual fervent prayer of a righteous man availeth much.

    ~ I have heard your prayer and seen your tears; I will heal you.

  3. #3
    WOW!! I do not even have all of those things here..been here forever! You are really on it, just try not to stress too bad...I know, sounds stupid but don't over burden yourself with too much at one time, take it in small doses!
    Misty

    Our son, Will was diagnosed with Sanfilippo, MPSIIIA in June, 2007. He is 6, born February 10, 2003. His loving older sister Nicole is 10.
    http://www.miracle4will.com

  4. #4
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    That's a pretty comprehensive list you have there! The only thing I would recommend is that you see if you can schedule an appt. with the new pediatrician ASAP once you get there. You know our kids- the more inconvenient the timing, the more likely they are to, say, develop a hernia. I speak from experience. Logan's hernia showed up the day we were loading the moving van (no, I did not make him carry boxes!). Our pediatrician had wanted to see him as soon as we got here, so we had an appointment scheduled for the first morning we were here. She diagnosed the hernia that morning. That night, it tried to strangulate on us! Fortunately, since we had been in that morning, I was able to call the on-call doctor, and she talked me through reducing it, saving us a trip to the ER.
    Robin
    Mom to Avery, 14 yrs
    ^^Logan^^, MPS II (6/14/03-3/15/15)
    and Kara, 9 yrs

  5. #5
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    Look at the Children(s) hospitals for orthotics as I am wondering if they have same company there that we have all over WI as one of ours. (Hanger orthotics I believe its called).

    Email Pediatricians ahead of time if you can figure out addy - in the middle of changing my PCP and surprised how many internal med and family practice docs have emailed me back quickly.

    Look in to waiver programs

    Look in to ABA type programs, often have good supports for school.
    Erica J. Thiel
    MPS I Hurler-Scheier, Age 30
    "Life is A Journey with a Past, Present and Future, But for Now all we have is Today"
    www.rarelydefined.blogspot.com

  6. #6
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    Thanks!

    The school district were looking into has a PTA just for kids with special needs . I'm wanting to get in contact with the pres so I can find the best pediatrician. but can't get ahold of none till school starts. I know Dr Burton at Children's will facilitate most of Jacks care, but Need someone for those chronic ear infections, Prevacid prescription, hernia like you said Robin.

    I know Misty I often take on too much, ugh, and pay for it. . Thanks for reminding me to slow down!

    Erica. We use Hanger here in Denver, hope they have hanger there!!!
    Jamie, mother to Jack (MPS II)

    www.heresjack.com
    www.savejack.ca

  7. #7
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    jamie, one thing to keep in mind when moving that far is with insurance. when we moved from kansas to virginia we had to switch regions with our insurance..took longer to get appointments and such due to having to switch. had to see the new pcm to get referals to specialists etc. because the referals made in the old region werent good in the new region. i think you have your bases covered with everything.
    Krista proud Army wife and mommy to
    Malissa 4/4/03 (bilateral cleft lip and cleft palate)
    www.caringbridge.org/visit/malissaburkett
    Jarin 3/3/07 dx with MPS ll at 1 month old and started ERT at 11 wks old
    www.caringbridge.org/visit/jarinburkett
    Levi 11/15/10


  8. #8
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    My head hurts just reading your list of things to do! Praying you get it all done.
    ~ Kelly Waddell

    Mom to:
    Caleb Allen (12/06/00)
    MPSI- Hurler; BMT (06/21/02)

    Lord, Keep your arm around my shoulder,and your hand over my mouth...AMEN..!!

    http://www.caringbridge.org/visit/calebwaddell

  9. #9
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    http://search.yahoo.com/search;_ylt=...p&fr=yfp-t-701

    Hanger clinic listings

    - I imagine Dr.Burton will hook you up with a neurosurgeon but if not let me know and I can ask my neurosurgeon here - she is Pediatric and did her med school _ first 6-7 yrs pre-fellowship in Chicago so familiar with the docs I am sure.
    Erica J. Thiel
    MPS I Hurler-Scheier, Age 30
    "Life is A Journey with a Past, Present and Future, But for Now all we have is Today"
    www.rarelydefined.blogspot.com

  10. #10
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    Sounds good! Can you organize me next time we move??
    Lots of love and good wishes
    Elizabeth, Peter, Daniel (MPSIIIA born Jan 91) and Samuel (born Nov 93)and Anna Nigina (born Nov 01)
    'I shall not die, but live and tell of the works of the Lord' Psalm 118 v. 1
    Video about Daniel and Sanfilippo,http://www.youtube.com/watch?v=RPG4w92RgbI
    Daniel's web site: http://www.caringbridge.org/visit/danielschuepbach

  11. #11
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    Erica, yes we need a recc on Nuero!
    Elizabeth, NO !!!

    Ugh, just a quick check in. Our house is listed, so that means showings. It's extremely difficult getting 2 kids out of the house when we get a call. the house moves fast, after this holiday week.
    I'm still solidifying a home in Naperville. And find out Jacks protocol for ITI treatment this week.

    Hope all is well! Miss you all!
    Jamie, mother to Jack (MPS II)

    www.heresjack.com
    www.savejack.ca

  12. #12
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    I will ask my nrsgn (or try to remember!) this week when I see her thurs. She's awesome so would have good taste.
    Erica J. Thiel
    MPS I Hurler-Scheier, Age 30
    "Life is A Journey with a Past, Present and Future, But for Now all we have is Today"
    www.rarelydefined.blogspot.com

  13. #13
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    Your move obviously comes with some important tasks and details to be researched and acted upon. But beyond those, it seems to me that this might be a really good opportunity to find a home in a neighborhood or community that has features to help support Jack and all of you.

    We bought our current house a few years before Ethan was born. As we've learned to live with the disease and looked down the road, we've realized that we will eventually need to move to open more opportunities for him.

    Were our mortgage not underwater, we would almost certainly move tomorrow. The key features we'd be looking for would be schools with very good special education programs, and perhaps even with expertise in specialties that Ethan needs; proximity to a few medical facilities/offices that we're likely to be utilizing, neighborhood traffic patterns that would be safer for Ethan, mass transit access, etc...

    Sorry, I don't mean to add to your list, but didn't want to overlook the opportunity.
    Todd Waddell
    Portland, Or
    E-mail: toddwaddell@zoho.com

    Dad to:
    Caleb Waddell (unaffected)
    Ethan Waddell MPS-1 Hurler's (dob 07/15/08. 1st BMT 10/29/09, 2nd BMT: 4/13/11)
    http://ethanwaddell.blogspot.com

    (Believe it or not, absolutely no relation to Kelly Waddell, or to her Caleb. No, really. I know, strange, right?)

  14. #14
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    Julie, you are amazingly organized, so I hope the house sale, new house purchase and the move all go as simple as possible for you. My friend lives in Naperville , it is very nice.
    Valerie Barnett

    Steffany (06/29/95 to 02/26/11) MPSIIIA
    Stevie "BammBamm" (12/14/97 to 12/31/12) MPSIIIA

  15. #15
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    Todd,
    We actually chose Naperville bc it's nationally known for top notch special education programming. Everything we have heard has been a dream. From therapies, to schooling, to support, and most importantly the acceptance within the community- which is large. Naperville is the 2nd largest city in Illinois. Now as far as state funding goes...

    Val, when you visit your friend please pop by!
    Jamie, mother to Jack (MPS II)

    www.heresjack.com
    www.savejack.ca

  16. #16
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    We'll, I hope your move goes okay.
    Thanks for posting this! Its my new to-do
    We might be moving to Albequrque or Denver area. A Suburb really though, I can't stand living in large cities.

    pros and cons

    Denver: Children's Hospital, and my Family
    Albeque: It's nice. No Family. Hospital, and good jobs - Major Con::: I cant spell it!
    married to Derrick
    Mom to
    Ian MPS 3A
    Tesla Unaffected

    Give it to God.

  17. #17
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    Lol Shelly.
    FYI Denver Childrens lysosomal storage disease team = ultra conservative we are happy to be leaving it behind!!!!!
    Jamie, mother to Jack (MPS II)

    www.heresjack.com
    www.savejack.ca

  18. #18
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    Quote Originally Posted by jmeb17 View Post
    Lol Shelly.
    FYI Denver Childrens lysosomal storage disease team = ultra conservative we are happy to be leaving it behind!!!!!
    bleck at the hospital thing. . .we are pretty conservative on treatment anyway, but when you need something I guess it would suck.

    We are looking for relocation because Derrick is looking ofr a new job because they are trying to find a way around medical leave to fire him.. . He really doesnt want that, but he thinks if he can find another job then he will at least be able to bow out gracefully. I think it sucks that they are going to fire him for being at Ian's appointments and hospital visits. . . and now it's to the point they are looking for any little way around the medical leave to fire him. blah. Our trips are about 4 hours from the hospital, and even if we moved closer to the hospital here in texas, there is nothing else there for us. So we are looking for New Mexico because that's where we like to vacation, and Colorado because I have alot of family in the denver area.
    married to Derrick
    Mom to
    Ian MPS 3A
    Tesla Unaffected

    Give it to God.

  19. #19
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    Shelly- Talk to Tina Lucero about Albuquerque. I liked the UNM hospital when I visited as a professional (Early Interventionist), but I don't have any experience as a parent. All our kiddos in Las Cruces had to go to UNM for anything significant, and that was a 3 hour drive, so I would think that if you were going to NM, Albuquerque would be the way to go. And yes, I can spell it. I had to learn, living in NM for 6 years!
    Robin
    Mom to Avery, 14 yrs
    ^^Logan^^, MPS II (6/14/03-3/15/15)
    and Kara, 9 yrs

  20. #20
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    Quote Originally Posted by Robin View Post
    Shelly- Talk to Tina Lucero about Albuquerque. I liked the UNM hospital when I visited as a professional (Early Interventionist), but I don't have any experience as a parent. All our kiddos in Las Cruces had to go to UNM for anything significant, and that was a 3 hour drive, so I would think that if you were going to NM, Albuquerque would be the way to go. And yes, I can spell it. I had to learn, living in NM for 6 years!
    Are you still there Robin? Your location says NY ?

    I guess it will depend on where we can both find descent jobs.
    married to Derrick
    Mom to
    Ian MPS 3A
    Tesla Unaffected

    Give it to God.

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