Welcome, Guest. Please login or register.
March 19, 2024, 04:11:00 am

Login with username, password and session length


Members
Stats
  • Total Posts: 772784
  • Total Topics: 66296
  • Online Today: 290
  • Online Ever: 5484
  • (June 18, 2021, 11:15:29 pm)
Users Online
Users: 1
Guests: 219
Total: 220

Welcome


Welcome to the POZ Community Forums, a round-the-clock discussion area for people with HIV/AIDS, their friends/family/caregivers, and others concerned about HIV/AIDS.  Click on the links below to browse our various forums; scroll down for a glance at the most recent posts; or join in the conversation yourself by registering on the left side of this page.

Privacy Warning:  Please realize that these forums are open to all, and are fully searchable via Google and other search engines. If you are HIV positive and disclose this in our forums, then it is almost the same thing as telling the whole world (or at least the World Wide Web). If this concerns you, then do not use a username or avatar that are self-identifying in any way. We do not allow the deletion of anything you post in these forums, so think before you post.

  • The information shared in these forums, by moderators and members, is designed to complement, not replace, the relationship between an individual and his/her own physician.

  • All members of these forums are, by default, not considered to be licensed medical providers. If otherwise, users must clearly define themselves as such.

  • Forums members must behave at all times with respect and honesty. Posting guidelines, including time-out and banning policies, have been established by the moderators of these forums. Click here for “Do I Have HIV?” posting guidelines. Click here for posting guidelines pertaining to all other POZ community forums.

  • We ask all forums members to provide references for health/medical/scientific information they provide, when it is not a personal experience being discussed. Please provide hyperlinks with full URLs or full citations of published works not available via the Internet. Additionally, all forums members must post information which are true and correct to their knowledge.

  • Product advertisement—including links; banners; editorial content; and clinical trial, study or survey participation—is strictly prohibited by forums members unless permission has been secured from POZ.

To change forums navigation language settings, click here (members only), Register now

Para cambiar sus preferencias de los foros en español, haz clic aquí (sólo miembros), Regístrate ahora

Finished Reading This? You can collapse this or any other box on this page by clicking the symbol in each box.

Author Topic: Mini update  (Read 129187 times)

0 Members and 1 Guest are viewing this topic.

Offline GNYC09

  • Member
  • Posts: 702
Re: Mini update
« Reply #300 on: September 30, 2009, 06:46:20 pm »
Good to hear about the pagaent - Mimi will be a star!

I'm sorry to hear about her vision but I hope the 2nd opinion you're getting will lead to a solution. 

Offline Ric Wilke

  • Member
  • Posts: 573
  • I joined AIDSmed.com 10/2002.
Re: Mini update
« Reply #301 on: September 30, 2009, 10:52:55 pm »
Break a leg, Mini.  You are gonna show them what you are made of.  We know every one of your "guys" will be walking the runway with you.  With all that "swish" behind you you'll do just fine.

Love you, R&T

Offline minismom

  • Member
  • Posts: 2,660
  • Quocumque jeceris stabit
Re: Mini update
« Reply #302 on: October 02, 2009, 07:40:46 am »
The pageant was yesterday afternoon and she did SO well!!  She didn't win, but it doesn't matter.  Hubby and I were more nervous than she was.  I thought I was going to faint during the interview portion.  We were given a list of 10 potential questions and we worked on them, but she was getting answers mixed up.  But she did just fine.  Honestly, I couldn't tell you what the question was or her answer.

 After the talent portion, I bawled!!!  I couldn't stop crying.  2 girls after her and I was still sobbing and quietly clapping for my angel.  I've never been so proud of her.  She got a rose and a trophy for participating.  Her rose is in a vase on our counter.  Her trophy is in her bed - she slept with it last night.

Our youngest son, the one who NEVER shuts up (seriously, I mean NEVER - even talks in his sleep!) got on stage and FROZE!!!  He's been dancing for 4 years, sings in church, and will talk to anyone.  And he totally FROZE!  He answered his question, sang his song, played musical chairs (to show good sportsmenship), but he had none of his usual pizzaz.  But, he got a big gift bag full of candy, pencils, coloring books, and a bunch of other "cool" kid stuff.  So, he's happy.

After seeing the list of 15 parades and events that was in the winners contract, I'm secretly glad they didn't win.  Prize money isn't even given out to this year's winners until next year to make sure that all contract obligations are met.  If you miss ONE event, you relinguish the crown, title, and forfeit the money.  Too much pressure for kids, if you ask me.  Plus, the whole point was to have fun - and they did.

Vision is still going in and out.  We're in contact with 2 different doctors trying to figure out the best and closest course of action.  We should know something in a couple of weeks.

Have a great weekend!
Mum
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline BT65

  • Global Moderator
  • Member
  • Posts: 10,786
Re: Mini update
« Reply #303 on: October 02, 2009, 09:39:28 am »
Mum, please give Mini and your youngest son a big hi-5 from me and Poppy.  It sounds like the outcome was the best-all that other stuff sounds like more than I'd want to do (the parades etc.).  I knew she'd do great.  Are there any pics?
 Luv,
Betty
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Condom and Lube Info https://www.poz.com/basics/hiv-basics/safer-sex
Please check out our lessons on PEP and PrEP. https://www.poz.com/basics/hiv-basics/pep-prep

https://www.poz.com/basics/hiv-basics/treatmentasprevention-tasp

Offline Robert

  • Member
  • Posts: 2,658
Re: Mini update
« Reply #304 on: October 02, 2009, 11:54:38 am »
The pageant was yesterday afternoon and she did SO well!!  She didn't win, but it doesn't matter.  Hubby and I were more nervous than she was.  I thought I was going to faint during the interview portion....
 
 After the talent portion, I bawled!!!  I couldn't stop crying.  2 girls after her and I was still sobbing and quietly clapping for my angel.  I've never been so proud of her.  She got a rose and a trophy for participating.  Her rose is in a vase on our counter.  Her trophy is in her bed - she slept with it last night.


I've met Mini.  I know Mini.  The girl is amazing.  She is wise and bold and nothing fazes her.  How many of us would sing an African Lullaby to a room full of strangers?.  (I remember in the 2nd grade I had to sing in front of the class and I forgot the words and all I could sing was "Glory, glory halleluia, glory, glory, glory glory...") 

When it comes to pagents..and life...I think the kid is a natural.  That Mini goes to bed with her trophy shows just how strong she is.

I am so proud of her and her brother and her mother and father.

robert
..........

Offline pozniceguy

  • Member
  • Posts: 1,232
  • Niceguy Dallas
Re: Mini update
« Reply #305 on: October 02, 2009, 12:45:02 pm »
big hugs and kisses to mini and Mom.  tell Oscar how proud we are of him to do all this

Nick
remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas

Offline #1 mom

  • Member
  • Posts: 114
Re: Mini update
« Reply #306 on: October 02, 2009, 10:30:56 pm »
Congratulations on the pagent! I'm glad they had a good time.
Amy
Amy

Offline AndyArrow

  • Member
  • Posts: 1,197
Re: Mini update
« Reply #307 on: October 04, 2009, 01:56:14 am »
I'm glad they had fun with the  pageant  ... thats what it's all about!
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline minismom

  • Member
  • Posts: 2,660
  • Quocumque jeceris stabit
Re: Mini update
« Reply #308 on: October 04, 2009, 07:58:28 am »
Thank you all for being supportive.  We were at the pet show Friday afternoon watching my parents' dog, a Chinese Powder Puff Crested named Ginger (who won 1st place), when a lady came up to Mim and told her what a good job she did during the pageant.  It was like her winning all over again.

Yesterday morning before the parade, we went out to breakfast at our small town restaurant.  It tends to be busy on Saturdays anyway, but during festival weekend when the population of our town goes from 900 to 15,000, it gets REALLY crowded with out of town guests and vendors.  Anyway, we were seated at a large 12-person table (there's only 8 of us) which allowed for some spread room.  Towards the end, I remembered Mim hadn't taken her meds - bad mommy, I know - so I told her to come and take them.  As she was walking over, our middle son asked what would happen if Mim didn't take her meds.  I whispered to him that she would get sick and could die. 

Our oldest son, who should know good and well better, asked why.  Without missing a beat, Mim turns around and says, from the opposite end of the rather large table, "Duh, Because I have AIDS." Hubby turned a scarey shade of green, the out of towners behind us stopped mid bite.  Our oldest realized what an idiotic question he'd asked.  Mim continued eating her pancake (without bacon, Dr. F) and I cut another slice of my very good grilled ham.  Seeing as it looked like Hubby was going to lose his breakfast, I also ate his last piece of homemade toast. ;D

Just another day in the life of a Jr. Pozzie keeping it real.

Mum
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline Inchlingblue

  • Member
  • Posts: 3,117
  • Chad Ochocinco PETA Ad
Re: Mini update
« Reply #309 on: October 04, 2009, 02:41:45 pm »
Not sure if anyone has said this to you before but you're a darn good writer.

I was enthralled reading that whole breakfast scene, so full of rich detail I could practically smell it.

I'm 47 and learning so much about life by way of your descriptions of the wit and wisdom of a beautiful and resilient 9-year old cutie-pie.

Offline karry

  • Member
  • Posts: 344
Re: Mini update
« Reply #310 on: October 04, 2009, 10:08:53 pm »
Mini, you rock!

I have just spent the last half hour reading about this little angel, and I am proud of her! I often complain about my life, my problems living with HIV...and reading about Mini just made me feel a huge sense of admiration for her!

I hope mum will pass the message to her..because she ROCKS!!!
Take it a day at a time....and be positive about it too!

Offline Lou-ah-vull

  • Member
  • Posts: 1,029
Re: Mini update
« Reply #311 on: October 04, 2009, 10:46:32 pm »
that's why she is our OFFICIAL princess!   :D

Gary
Diagnosed Oct. 2005
10/05:  367 (26.2%), 24556 VL
01/06:  344 (24.6%), 86299 VL
04/06:  374 (22.0%), 87657 VL
05/06:  Began HAART 05/15/06, Combivir/Kaletra
07/06:  361 (27.8%), 1299 VL
10/06:  454 (32.4%), 55 VL
01/07:  499 (38.4%), UD
02/07:  Switched to Atripla 2/8/07
04/07:  566 (37.7%), UD
08/07:  761 (42.3%), UD
06/08:  659 (47.1%), UD
01/09:  613 (43.8%), UD
07/09:  616 (47.4%), UD
01/10:  530 (44.2%), UD
07/10:  636 (48.9%), UD
01/11:  627 (48.2%), UD
07/11:  840 (52.5%), UD
01/12:  920 (51.1%), UD
07/12:  857 (50.4%), 40
10/12:  UD
01/13:  710 (47.3%), UD
07/13:  886 (49.2%), UD
01/14:  985 (46.9%), UD
06/14:  823 (47.2%), UD
01/15: 1366 (45.2%), UD
07/15: 1134 (50.7%), UD
02/16: 1043 (55.1%), UD
08/16:  746  (55.4%), UD
08/16:  Switch from Atripla to Genvoya

Offline fearless

  • Member
  • Posts: 2,191
Re: Mini update
« Reply #312 on: October 06, 2009, 01:26:47 am »
The breakfast story is beautiful, mum.
And you had me shed a tear when reading about the paegent (and i only ever cry when my football team loses!!!).
Mini is simply wonderful.

Be forgiving, be grateful, be optimistic

Offline pozniceguy

  • Member
  • Posts: 1,232
  • Niceguy Dallas
Re: Mini update
« Reply #313 on: October 06, 2009, 11:58:19 am »
Hooray for our brave and beautiful princess,  no stigma for her.  put out there for all to see.  Oscar is such a tremendous guy , but everyone has limits.   Love to you all....

Nick
remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas

Offline minismom

  • Member
  • Posts: 2,660
  • Quocumque jeceris stabit
Re: Mini update
« Reply #314 on: October 09, 2009, 07:43:37 am »
Nick, honestly I think he expected to see pitch forks in the parking lot.  Most of our townies know she's Poz.  For some reason "knowing it" and "hearing it" are two different things. 

She's made another stride.  She has started taking control of her medication schedule. Our past routine was as she's eating breakfast, Hubby or I would take out her meds and put them beside her cup.  As she was clearing off her dishes, we'd ask if she'd taken her meds.  Then, at 8pm, we'd call her up to take her night med.  This entire week, she's taken it upon herself to get her own meds at breakfast and again at night.  I don't even have to ask anymore - she tells us when she's taken them.  Such a huge step in a seemingly simple act.

She's growing up, guys.
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline minismom

  • Member
  • Posts: 2,660
  • Quocumque jeceris stabit
Re: Mini update
« Reply #315 on: October 18, 2009, 08:04:04 am »
Quick update:
 
Last Sunday was our church's annual family weenie roast.  As part of the festivities, some races were organized for the children.  First up was the sack race.  Mim spent more time on the ground than she did on her feet.  Long after everyone else crossed the finish line, she was still laying on the ground laughing.  She got stuck in the sack and Hubby and I had to drag her out of it.  BUT THEN...

The next race was a straight out "to the trees and back" race.  There were 9 kids running.  I couldn't believe my eyes - SHE WON!!  She got those long legs of her's in gear and ran like death itself was chasing her.  Some of the boys weren't too happy about it - nothin' a bit of therapy won't cure. ;)

Then came an obstacle course which, for a dyslexic, is nothing shy of cruel and unusual punishment.  She got confused about which way to turn, where to go, and what to do.  However, at the end of her run, in true Mim fashion, she gave a very deep bow to the crowd who answered with thunderous applause (and laughter).

Last race - a 1/2 mile relay.  Not that every kid had to run 1/2 a mile.  It's 1/2 a mile tota around the lake and 4 kids on each team.  So no one really ran all that far.  For some odd reason, they paired our middle son (9 1/2) against a cross-country middle school runner.  Not exactly a fair match up.  Then, to make matters a bit more challenging, Mim was running anchor (the last racer).  Middle son got beat by a mile (in a 1/2 mile race :P) and the runner after him was on the way slow side.  By the time Mim was tagged, the other team's anchor was 1/2 way to the finish line.  If I hadn't seen it with my own eyes, I would have NEVER believed it.  Out of the blue, Mim kicked it in to high gear and ended up pulling ahead - bringing victory home for her team!!!  Her heart was racing like mad and she drank a gallon of water after but GOOD GRIEF - she WON! ;D

Before bed, she had a dose of Tylenol with a Bengay chaser.  I've never seen her little legs move that fast - ever.

This Friday we're venturing out again to see her PID.  Her weights have stayed low, but steady.  Dance class is challenging, but she's having a good time.  School is coming along, despite her vision going in and out.  We're making some progress with math - got 3 pages done by herself this week with near 100%.  BIG progress there.  She's reading "The Tale of Despereaux" but can only do a page or 2 at a time before her eyes get fatigued and she has to stop.  At that point, our middle son picks it up, then Hubby or I, then back to her...  Still working on comprehension and memory skills.  Writing is still horrible, but is much less painful than teaching her how to type.

I'll let you all know what happens Friday.  Hopefully we can go to every 6mths - but I'm not holding my breath.

Have a great week!
Mum
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline Inchlingblue

  • Member
  • Posts: 3,117
  • Chad Ochocinco PETA Ad
Re: Mini update
« Reply #316 on: October 18, 2009, 11:20:05 am »
That's very impressive! It sounds like she has some genuine athletic ability when it comes to running.

Offline pozniceguy

  • Member
  • Posts: 1,232
  • Niceguy Dallas
Re: Mini update
« Reply #317 on: October 18, 2009, 02:33:27 pm »
lots of hugs and love to Mini  she gets out there shows what she can do.  the rest will come as well as she can also.  be patient  ( I know how hard that is),  give her extra hugs from me.


Nick
remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas

Offline #1 mom

  • Member
  • Posts: 114
Re: Mini update
« Reply #318 on: October 19, 2009, 05:39:42 pm »
Way to go Mini! Girl Power!
Amy

Offline BT65

  • Global Moderator
  • Member
  • Posts: 10,786
Re: Mini update
« Reply #319 on: October 19, 2009, 05:57:43 pm »
OMG!  This definitely deserves hugs from myself and a couple from Poppy! 

GOOD JOB MIM!!! :-* :-*
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Condom and Lube Info https://www.poz.com/basics/hiv-basics/safer-sex
Please check out our lessons on PEP and PrEP. https://www.poz.com/basics/hiv-basics/pep-prep

https://www.poz.com/basics/hiv-basics/treatmentasprevention-tasp

Offline Longislander

  • Member
  • Posts: 2,489
Re: Mini update
« Reply #320 on: October 20, 2009, 02:28:14 am »
WOW!! Way to go Mim!!


Paul ;D ;D ;D ;D ;D
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline skeebo1969

  • Member
  • Posts: 5,931
Re: Mini update
« Reply #321 on: October 20, 2009, 03:09:58 am »


   She is truly an amazing little girl.  Wish I had half of her fight and determination, and MOM you are a great mother.
I despise the song Love is in the Air, you should too.

Offline AndyArrow

  • Member
  • Posts: 1,197
Re: Mini update
« Reply #322 on: October 20, 2009, 03:17:52 am »
It's a bird, it's a plane no it's Supergirl!   Way to go Mini!!!
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline minismom

  • Member
  • Posts: 2,660
  • Quocumque jeceris stabit
Re: Mini update
« Reply #323 on: October 23, 2009, 11:40:20 pm »
We made it through the rainstorms to Mim's ID appointment.  Here are the preliminary numbers we have back:

CD4: 946 (down)
%: 44%
Total Cholesterol: 165
HDL: 50
LDL: 170
Triglycerides: 218 :o

We won't have her VL back for a couple of weeks.  The rest of her labs (liver, CBC, morphs, ect.) were pretty much where they've always been.  Her weight is still below where it should be, but she's been holding steady.  She has standing lab orders at our local hospital now so she'll have repeat labs in December and February, then back to the doc in March (as long as nothing is hinkey).

During the exams, Doc is really good about checking her bones and joints.  Today he found something that concerned us all - her left knee is "grinding".  He said it felt (and sounded) like the cartilage was either wearing away or gone.  :-\  His office is scheduling yet another MRI to check it out.  I'm amazed Mim isn't glowing from all the radiation she's gotten.

Until we get back the results, he told us not to limit her activity.  We'll just watch it to make sure it doesn't swell.

I hope everyone is having a great weekend.  I'm keeping it short - been a long day.

Mum
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline BT65

  • Global Moderator
  • Member
  • Posts: 10,786
Re: Mini update
« Reply #324 on: October 24, 2009, 07:09:53 am »
Mum, I hope the doctor knows a really good orthopaedist who can help Mim with her knee problems.  I totally feel for her.  Give her a hug from me and one from Poppy.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Condom and Lube Info https://www.poz.com/basics/hiv-basics/safer-sex
Please check out our lessons on PEP and PrEP. https://www.poz.com/basics/hiv-basics/pep-prep

https://www.poz.com/basics/hiv-basics/treatmentasprevention-tasp

Offline PeteNYNJ

  • Member
  • Posts: 979
  • When life gives you AIDS...make LemonAIDS!
    • Dance for Me, Puppets
Re: Mini update
« Reply #325 on: October 24, 2009, 04:27:37 pm »
Mum

Surprised she can do all that great running if her cartilage was wearing away.  I would think the grinding would cause some pain, similar to arthritis.  Hopefully she just has some noisy joints - I have had noisy ankles since I was a kid but it hasn't progressed at all. 

44% is a great number.  Hopefully Mini will let me borrow a few % points if I ever need them  ;)

Offline minismom

  • Member
  • Posts: 2,660
  • Quocumque jeceris stabit
Re: Mini update
« Reply #326 on: October 25, 2009, 07:23:51 am »
Pete, you got me.  Her eyes can't track worth a flip, but she can read (big font, double-spaced typed).  Cartilage in her knee is worn, or wearing, down, but she runs like blue blazes.  She's learned to cope and adapt - and never ceases to amaze me.  At her PID visit in August, the knees weren't ginding, now the left one is :-\  All we can do now is wait for the MRI and see what it shows.

She's been complaining about her knees, hips, and ankles hurting/catching for years.  Her ex-PID did nothing, her ex-neurologist did nothing, her ex-ortho guy did nothing - hence the "ex".  Depending on what the MRI shows, we do have another ortho doc in mind.  He's worked on several family members and I REALLY like him.

Doc F asked Mim if it was OK with her to have another MRI since she has to be sedated.  She said it was fine as long as she could have Chic-Fil-A after and he doesn't make her wear braces.  He said Chick-Fil-A was fine, but no promises about the braces.  That earned him a dirty look ::)

Make it a good one!
Mum
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline BT65

  • Global Moderator
  • Member
  • Posts: 10,786
Re: Mini update
« Reply #327 on: October 25, 2009, 07:55:33 am »
Mum, I wear a brace on my left knee to keep my two large bones in the front from popping in and out.  And it alleviates a lot of pain.  Tell Mim, if she ever has to wear braces, and wants someone to talk to about it, I'd be happy to chat with her. 
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Condom and Lube Info https://www.poz.com/basics/hiv-basics/safer-sex
Please check out our lessons on PEP and PrEP. https://www.poz.com/basics/hiv-basics/pep-prep

https://www.poz.com/basics/hiv-basics/treatmentasprevention-tasp

Offline minismom

  • Member
  • Posts: 2,660
  • Quocumque jeceris stabit
Re: Mini update
« Reply #328 on: November 09, 2009, 07:22:21 am »
ACK! 101.5 - Mim's temp last night before she went to bed.  I gave her 2 children's Tylenol which brought it down to just over 99 in a half hour.  By the time I went to bed about an hour later, it was down to 98.7.  She'd been coughing most of the day yesterday, but it seems to be from drainage in her head and not in her chest. I gave her a dose of Robitussin and she didn't cough during the night. I have Tama-flu but haven't given it to her.  I'm just not believing that this is any more than a seasonal cold.  I've emailed Doc F to let him know what's been happening.  She's still sleeping, but I'll check her again when she gets up.

She's continuing to complain about her hips and knees hurting.  Saturday was beautiful here but she didn't want to go out and play.  Part of that was due to her not feeling good, but the other part was because, in her words she, "just didn't feel like doing anything but sitting down.  My knees just hurt."  I've put a call in to the lady who schedules testing to see if, and when, Mim's MRI has been scheduled.

Another unusually warm day on tap today.  We'll see how she feels about going out to play.

Make it a good one!
Mum

www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline minismom

  • Member
  • Posts: 2,660
  • Quocumque jeceris stabit
Re: Mini update
« Reply #329 on: November 12, 2009, 08:20:45 am »
Good grief!  It took an act of unnatural proportions, but we finally got Mim's MRI scheduled.  She goes for pre-admition testing on 12/2 at 8:15am, then her MRI is 12/11 at 8am.  She's had 10+ MRI's in her life, all of them sedated, and this will only be the 2nd time she's ever had pre-admit testing.  It's a 3hr round-trip drive for a 5 minute Hail Mary appointment.  Total waste of time, but for whatever reason, they wouldn't let us skip it this time.

MRI at 8am and 11 hours later at 7pm, she'll be dancing the first night of her fall concert.

Her cough is persisting, but her fever hasn't returned since Monday morning.  She's still eating and sleeping well, but I don't like the coughing. 
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline minismom

  • Member
  • Posts: 2,660
  • Quocumque jeceris stabit
Re: Mini update
« Reply #330 on: December 02, 2009, 05:09:12 am »
Today is pre-admission testing day - AKA Big Fat Waste of Time.  We drive over 65 miles (1 way) so some over-paid secretary can take Mim's weight, blood pressure, temperature, confirm our address and phone number, then make the 65 mile trekk back home. Hospital cut their budget so there's not even the highly anticipated sticker at the end.

 Mim has had more MRI's than birthdays.  Her last one was back in April.  For every one of them she's been sedated.  Only a handful of times has she had to go through this pre-admission testing bull.  Would it be such a hardship to just have a scale and bloodpressure cuff in the MRI suite?  Once we're called back, they stick us in a room and ask us the same questions anyway. Since they are so bent on wasting my time, can they not at least READ the chart that's in their hand?

During Thanksgiving dinner, Mim asked if while she was asleep, they'd cut open her knee and fix it.  I didn't have the heart to tell her that if Doc finds what's expected (avascular necrosis) that nothing can be done until she's at least 21.  How do I tell my child to hang in there another 12 years?

MRI is scheduled for Friday, Dec. 11th, 8am.  Please start praying now for a no snow day.

Mum

www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline BT65

  • Global Moderator
  • Member
  • Posts: 10,786
Re: Mini update
« Reply #331 on: December 02, 2009, 05:57:27 am »
Mum, I'm sorry you guys are having to go through this pre-testing crap.  Maybe you should mention to the doctor, when you see him, about the inconvenience it causes.

I was diagnosed with avascular necrosis years ago (about maybe 7) in both knees.  Tell Mim if she ever wants to chat with someone about it, I'd be happy to try to help.  I know it's tougher on kids, because they love to run and hop etc. and I do neither of these anymore. ;)

Give her a hug and smooch from me and Poppy.
   Luv,
Betty

Edited to correct the # of years.
« Last Edit: December 02, 2009, 06:55:47 pm by BT65 »
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Condom and Lube Info https://www.poz.com/basics/hiv-basics/safer-sex
Please check out our lessons on PEP and PrEP. https://www.poz.com/basics/hiv-basics/pep-prep

https://www.poz.com/basics/hiv-basics/treatmentasprevention-tasp

Offline minismom

  • Member
  • Posts: 2,660
  • Quocumque jeceris stabit
Re: Mini update
« Reply #332 on: December 02, 2009, 06:13:38 am »
Unfortunately, Betty, it's a hospital policy - one they've not stressed about breaking in the past.  Doc has no control over it.  I asked the hospital if we could have the "stuff" done at another hospital that's 25 minutes away with the results faxed to them.  The guy I was talking to acted insulted.  I tried to explain my situation but he wouldn't hear it.  So, I'm sending Hubby while I stay home and bake sugar-free sugar cookies with the kids. ;D

She's a kid who, just yesterday, broke her glasses rolling down the hill.  ::) She likes running, jumping on the trampoline, and dancing - she's a kid in constant motion. On days when it's really bad, she'll ask us if we've noticed that she's been sitting around a lot - that she wants to go out and play, but she hurts. She just wants to not hurt.

Mum

edited to add: In case you're wondering why we don't just have her MRI done at the closer hospital - that hospital doesn't do peds / sedated MRI's.  The farther hospital is the closest one that does.
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline minismom

  • Member
  • Posts: 2,660
  • Quocumque jeceris stabit
Re: Mini update
« Reply #333 on: December 11, 2009, 07:16:59 am »
Late last night, we were told that Mim's MRI scheduled for today has been cancelled.  In short, her PID, who was accredited to schedule tests in our state (different state than where he practices) through his old practice, hasn't yet been accredited to schedule tests in his new facility.  Pissed off?  Yeah, I am.  But more so disappointed.  Insurance has had since November 2nd to figure all this stuff out. 

Mim went through pre-admission testing earlier this month that will now have to be repeated before her MRI can be done (once it's rescheduled).  Yesterday morning, the hospital called to not only confirm her appointment, but go over thier NPO policy since she was being sedated.  Then last night, BAM!, everything cancelled.  When I told Mim, she got weepy.  She's never done that before.  "Don't they know I'm tired of this?"  What could I tell her?  Nothing.  What can I do?  Nothing.  I'm getting tired of this, too.
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline Sheri

  • Member
  • Posts: 32
Re: Mini update
« Reply #334 on: December 11, 2009, 12:22:51 pm »
Even the strongest person gets tired and frustrated.  I think most people would have long since hit the breaking point with all of the idiotic insurance bureaucracies and other medical mishaps.  She's such a trooper, and it hurts to hear how this is affecting her.  My prayers are with you guys.  Hang in there, sweet girl!

Offline WillyWump

  • Member
  • Posts: 7,367
  • EPIC FIERCENESS!
Re: Mini update
« Reply #335 on: December 11, 2009, 06:33:22 pm »
I've seen Insurance, etc... drop the ball like this and it is damn frustrating, but when they do it to kids, especially my Mim, its infuriating! It breaks my hear to hear she got weepy, big hugs to mim please...

And Mom, you certainly deserve a huge hug, you are such a trooper! And something tells me you are going to wip this into shape somehow.

Thinking about yall!
 ((((( Mini, Mom, hubby, Etc...))))))

-Will
POZ since '08

Last Labs-
11-6-14 CD4- 871, UD
6/3/14 CD4- 736, UD 34%
6/25/13 CD4- 1036, UD,
2/4/13, CD4 - 489, UD, 28%

Current Meds: Prezista/Epzicom/ Norvir
.

Offline MarkB

  • Member
  • Posts: 292
Re: Mini update
« Reply #336 on: December 11, 2009, 08:16:38 pm »
There are no words: just great love sent to you all from here, far away.

 :-*

Offline minismom

  • Member
  • Posts: 2,660
  • Quocumque jeceris stabit
Re: Mini update
« Reply #337 on: December 13, 2009, 08:17:19 am »
Thank you for your kinds words and thoughts.  Her weight, which has been holding steady, is now trending back down.  She's down over 3lbs in 2 days.  Here we go again. :-\

She asked me last night if she's going to lose her vision.  It keeps going in and out.  I told her I didn't know, but probably not.  She asked if it did, if she could get a big dog to walk her around.  I had to smile - and told her yes.  So she drew me a picture of what she wants her dog to look like since, after all, if her vision is gone, she won't be able to pick it out.  It's hanging on our 'fridge. 

www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline Ann

  • Administrator
  • Member
  • Posts: 28,134
  • It just is, OK?
    • Num is sum qui mentiar tibi?
Re: Mini update
« Reply #338 on: December 13, 2009, 08:31:27 am »

She asked me last night if she's going to lose her vision.  It keeps going in and out.  I told her I didn't know, but probably not.  She asked if it did, if she could get a big dog to walk her around.  I had to smile - and told her yes.  So she drew me a picture of what she wants her dog to look like since, after all, if her vision is gone, she won't be able to pick it out.  It's hanging on our 'fridge. 


It's not often that something makes me cry, but that sure did. Please give that little angel a hug and a kiss from me.

Ann
xxx
Condoms are a girl's best friend

Condom and Lube Info  

"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline BT65

  • Global Moderator
  • Member
  • Posts: 10,786
Re: Mini update
« Reply #339 on: December 14, 2009, 05:52:44 am »
Mum, that's heartbreaking.  Tell Mim that Poppy and I send her mucho love, hugs and kisses.  And tell her we're pulling for her. :-*
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Condom and Lube Info https://www.poz.com/basics/hiv-basics/safer-sex
Please check out our lessons on PEP and PrEP. https://www.poz.com/basics/hiv-basics/pep-prep

https://www.poz.com/basics/hiv-basics/treatmentasprevention-tasp

Offline skeebo1969

  • Member
  • Posts: 5,931
Re: Mini update
« Reply #340 on: December 14, 2009, 08:36:19 am »



   Big ((((HUGS)))) to Mini....
I despise the song Love is in the Air, you should too.

Offline pozniceguy

  • Member
  • Posts: 1,232
  • Niceguy Dallas
Re: Mini update
« Reply #341 on: December 14, 2009, 05:45:50 pm »
Extra big hugs and kisses to that so practical and level headed baby...  you are so strong and she is precious.  love to you all


Nick
remember the good times...honor the past but don't live there
Le stelle la notte sono grandie luminose, nel cuore profondo del Texas

Offline minismom

  • Member
  • Posts: 2,660
  • Quocumque jeceris stabit
Re: Mini update
« Reply #342 on: December 15, 2009, 05:53:07 am »
Another self-outting story (she really does crack me up):

Last night the kids and I met Hubby for dinner.  All was going well until it was time for dessert - no sugar-free selections available.  I told Mim she could pick one thing, don't go over-board, because she has blood work next week.

On her way to get her dessert, she stops to talk to the hostess and waitress (she's forever stopping to talk to someone).  She told them that next week she's going to get her blood work done.  They're going to suck it up into a tube and then send it to the lab.  The ladies both made a face and said "OOOO!"  Mim just smiled and said, "No, I like having it done.  They send it to the lab and check all my numbers and stuff to make sure I'm healthy because I have diabetes."  Then, as she's bitty-bopping away, she turns around and says, with the biggest smile on her face, "Oh, yeah, I have HIV, too!"

I laughed until I thought I'd pee my pants.  Hubby just smiled and shook his head.  Our 12-yr-old looked like he wanted to crawl under the table.  Our Aspie son didn't understand why Mim being "sick" was so funny.  When she got back to the table, with her very moderate dessert, Hubby told her that her blood work and "other things" should stay in the family.  I told her when she's finished talking to people, she should shake their hand ;D

She has a shirt that says "HIV - Fight It Like A Girl!"  I think her next one will say "Poz and Proud".

Mum
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline leatherman

  • Global Moderator
  • Member
  • Posts: 8,583
  • Google and HIV meds are Your Friends
Re: Mini update
« Reply #343 on: December 15, 2009, 12:08:07 pm »
I told her when she's finished talking to people, she should shake their hand ;D
ROFLMAO that cracked me up!
and you wonder where your little daughter gets her in-your-face attitude from  :D ;D :-*
leatherman (aka Michael)

We were standing all alone
You were leaning in to speak to me
Acting like a mover shaker
Dancing to Madonna then you kissed me
And I think about it all the time
- Darren Hayes, "Chained to You"

Offline AndyArrow

  • Member
  • Posts: 1,197
Re: Mini update
« Reply #344 on: December 15, 2009, 02:19:59 pm »
She is such an inspiration ... what a great way to live!
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline AlanBama

  • Member
  • Posts: 3,670
  • Alabama: the 'other' 3rd World Country!
Re: Mini update
« Reply #345 on: December 15, 2009, 03:27:20 pm »
Sending you love and prayers, during this Advent season...

Love,

Alan   :-*
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline Jody

  • Member
  • Posts: 1,961
Re: Mini update
« Reply #346 on: December 15, 2009, 10:11:11 pm »
Mini...You're the BEST and you always will be.

Jody  :D
"Wake up to find out that you are the eyes of the world".
 "Try to discover that you are the song that the morning brings."

Grateful Dead

Offline minismom

  • Member
  • Posts: 2,660
  • Quocumque jeceris stabit
Re: Mini update
« Reply #347 on: December 16, 2009, 05:17:50 am »
Mikie, you don't know the half of it..lol.  She's not really "in your face", she's just always been a very open and social kinda person.  On shopping trips, she'll point people out and say, "Mom, did you know that so-and-so has a poodle named Fred?"  Um, dear, I don't even know who so-and-so is.  Where did you meet them?  "In the bathroom" is her usual response.  ::)  Believe me, she's not the one you want to tell your secrets to.

Wishing all of you the very best this season has to hold.
Hubby, Mum, Mim, and the rest of the gang
« Last Edit: December 17, 2009, 05:35:33 pm by minismom »
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

Offline Lou-ah-vull

  • Member
  • Posts: 1,029
Re: Mini update
« Reply #348 on: December 16, 2009, 09:17:33 pm »
Well it is no secret that she is our official Princess!  I am hoping things start getting better immediately for all of you!

Gary
Diagnosed Oct. 2005
10/05:  367 (26.2%), 24556 VL
01/06:  344 (24.6%), 86299 VL
04/06:  374 (22.0%), 87657 VL
05/06:  Began HAART 05/15/06, Combivir/Kaletra
07/06:  361 (27.8%), 1299 VL
10/06:  454 (32.4%), 55 VL
01/07:  499 (38.4%), UD
02/07:  Switched to Atripla 2/8/07
04/07:  566 (37.7%), UD
08/07:  761 (42.3%), UD
06/08:  659 (47.1%), UD
01/09:  613 (43.8%), UD
07/09:  616 (47.4%), UD
01/10:  530 (44.2%), UD
07/10:  636 (48.9%), UD
01/11:  627 (48.2%), UD
07/11:  840 (52.5%), UD
01/12:  920 (51.1%), UD
07/12:  857 (50.4%), 40
10/12:  UD
01/13:  710 (47.3%), UD
07/13:  886 (49.2%), UD
01/14:  985 (46.9%), UD
06/14:  823 (47.2%), UD
01/15: 1366 (45.2%), UD
07/15: 1134 (50.7%), UD
02/16: 1043 (55.1%), UD
08/16:  746  (55.4%), UD
08/16:  Switch from Atripla to Genvoya

Offline minismom

  • Member
  • Posts: 2,660
  • Quocumque jeceris stabit
Re: Mini update
« Reply #349 on: December 22, 2009, 07:36:30 am »
Just wanted to wish everyone a very special Merry Christmas.  May the coming year bring the very best to each and every one of you.  I can't begin to tell you all how much you have meant and continue to mean to our family.  Your love and support is insurmountable and invaluable.

Looking forward to the adventures 2010 hold for us.

Much love to you all,
Hubby, Mum, Mim, J, I, E, EB, S, and Ava (dog)
www.watoto.com
www.MotherBearProject.org
"Whichever way you throw me, i will stand"
"Don't worry about the world coming to an end today...it's already tomorrow in Australia"  Charles Schultz

 


Terms of Membership for these forums
 

© 2024 Smart + Strong. All Rights Reserved.   terms of use and your privacy
Smart + Strong® is a registered trademark of CDM Publishing, LLC.