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Author Topic: Mini update  (Read 58934 times)

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Offline minismom

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  • Quocumque jeceris stabit
Re: Mini update
« Reply #150 on: April 15, 2009, 09:26:51 PM »
Aw, thanks, hun! :-*  I just keep thinking that if I can just make it until May 20th ("last" appointment on the books so far), then we'll be off on a 2wk vacation of fun in the sun.  It'll be nice to just put this behind us for a bit, even if it's waiting for us when we get home. 

I'll probably end up back at the doctor tomorrow.  I'm living on albuterol (mixed with eucaliptus oil) via my nebulizer, sinus/cough/chest/nose stuff that's nasty, and dyflucan.  I need a steroid but hate taking them. My lungs are telling me to suck it up and get over it. :-\  Better to make the lungs happy.

I'm beyond impressed with this new doctor.  He's just so human and honest and genuine.

Sweet dreams, Alan!
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 Longislander

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Re: Mini update
« Reply #151 on: April 15, 2009, 10:57:53 PM »
I don't know anything about this new combo ( or any other combo, for that matter!) , but I hope this is the one!

It's great to here that you guys are still loving the new Dr.! Is he cute??

Get yourself better, mum, two weeks in the sun sounds great!


Paul
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 fearless

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Re: Mini update
« Reply #152 on: April 15, 2009, 11:38:28 PM »
yay, Mini. new drugs, new drugs... here's hoping for no side effects and great results.

Mum - hope you feel better soon. your body is telling you it needs that vacation. relax and enjoy.
Be forgiving, be grateful, be optimistic

Offline next2u

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Re: Mini update
« Reply #153 on: April 15, 2009, 11:41:49 PM »
yea for mini's new dr and some new found confidence. keep us posted :  )~
midapr07 - seroconversion
sept07 - tested poz
oct07 cd4 1013; vl 13,900; cd4% 41
feb08 cd4  694;  vl 16,160; cd4% 50.1
may08 cd4 546; vl 91,480; cd4% 32
aug08 cd4 576; vl 48,190; cd4% 40.7
dec08 cd4 559; vl 63,020; cd4% 29.4
feb09 cd4 464; vl 11,000; cd4% 26
may09 cd4 544; vl 29,710; cd4% 27.2
oct09 cd4 ...; vl 23,350; cd4% 31.6
mar10 cd4 408; vl 59,050; cd4% 31.4
aug10 cd4 328; vl 80,000; cd4% 19.3 STARTED ATRIPLA
oct10 cd4 423; vl 410 ;); cd4% 30.2
jun11 cd4 439; vl <20 ;); cd4% 33.8 <-Undetectable!
mar12 cd4 695; vl ud; cd4% 38.6
jan13 cd4 738; vl ud; cd4% 36.8
aug13 cd4 930; vl ud; cd4% 44.3
jan14 cd4 813; vl ud; cd4% 42.8
may14 cd4 783; vl *; cd4%43.5

Offline AndyArrow

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  • Posts: 1,196
Re: Mini update
« Reply #154 on: April 16, 2009, 09:36:46 AM »
Great News on the new doc & combo.  I hope these really help Mini and that you get yourself better real soon!

AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline Snowangel

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Re: Mini update
« Reply #155 on: April 16, 2009, 11:26:12 AM »
I am so glad for you both that you have a new doctor and I hope the new combo works out for her.

I hope you feel better soon too.

Snow
Of all the things you wear, your expression is the most important

The heaviest thing you can carry is a grudge..

One thing you can give and still keep...is your word.

One thing you can't recycle is wasted time.

Offline minismom

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  • Quocumque jeceris stabit
Re: Mini update
« Reply #156 on: April 16, 2009, 02:55:08 PM »
First, a quick disclaimer: She's NOT on 3TC boosted Epzicom.  She's on Epzicom which is Ziagen AND 3TC in one pill.  I was confused but our sweet doctor emailed me and explained my confusion.

Now, an update about me.  I went to the doctor today and got some disturbing news.  My chest x-ray showed "odd-shaped" pneumonia that may not actually be pneumonia.  After a 14 day round of 5 meds, I'll go back for a repeat xray.  If it is indeed pneumonia, then it will be gone.  If not, then we'll discuss what steps to take to diagnos the splotchy masses that have taken up residence in my lungs.

Also found out why I'm getting hot when I cough.  When my O2 saturation is up to 97%, my heart rate jumps to 184.  As my O2 saturation goes down, my heart slows (to about 124 - still high, but not horrible) and I cool down.  However, once it gets to around 93 - 94%, my heart rate goes back up.  With any type of activity, my heart rate jumps higher as it's trying to make up for the lack of oxygen my poor lungs produce.

 Not exactly what I expected to hear.  I'll not pretend that everything is OK or that the news didn't hit me like a ton of bricks.  Today, things are definately not OK.  But, that doesn't mean that tomorrow won't be better.  For now, I'm being a good patient and choking down 15 pills twice a day.  Hubby and the kids are being wonderful and taking up the slack.  I'm taking Ric's advice: I keep saying it until I don't cry anymore.

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 RapidRod

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Re: Mini update
« Reply #157 on: April 16, 2009, 03:20:15 PM »
You take care of yourself you hear? I had pneumonia once and I wouldn't wish that on my worst enemy.

Offline Assurbanipal

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  • Taking a forums break, still see PM's
Re: Mini update
« Reply #158 on: April 17, 2009, 10:58:59 AM »
Dear Mum

Been away and so happy to hear about Mini's new doc! but concerned about you.  Please do take care of yourself.  It is not enough to just take the pills -- pneumonia requires a LOT of rest too.   From all the chat on here you may think pneumonia is mainly an HIV thing but it isn't.  It is very dangerous if you do not take it seriously -- so please, rest up!

Hope you feel better.
A

5/06 VL 1M+, CD4 22, 5% , pneumonia, thrush -- O2 support 2 months, 6/06 +Kaletra/Truvada
9/06 VL 3959 CD4 297 13.5% 12/06 VL <400 CD4 350 15.2% +Pravachol
2007 VL<400, 70, 50 CD4 408-729 16.0% -19.7%
2008 VL UD CD4 468 - 538 16.7% - 24.6% Osteoporosis 11/08 doubled Pravachol, +Calcium/D
02/09 VL 100 CD4 616 23.7% 03/09 VL 130 5/09 VL 100 CD4 540 28.4% +Actonel (osteoporosis) 7/09 VL 130
8/09  new regimen Isentress/Epzicom 9/09 VL UD CD4 621 32.7% 11/09 VL UD CD4 607 26.4% swap Isentress for Prezista/Norvir 12/09 (liver and muscle issues) VL 50
2010 VL UD CD4 573-680 26.1% - 30.9% 12/10 VL 20
2011 VL UD-20 CD4 568-673 24.7%-30.6%
2012 VL UD swap Prezista/Norvir for Reyataz drop statin CD4 768-828 26.7%-30.7%

Offline minismom

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Re: Mini update
« Reply #159 on: April 17, 2009, 04:14:21 PM »
Got some preliminary results from Mim's blood work on Wed.  They were EMAILED to me today.  I could really get used this ;)

WARNING: if you have a heart condition, are prone to swooning, or have the vapors, DO NOT read the following message as it may induce increased heart rate, whooping, hollering, and sudden urges to high-five someone.

t-cells: (sit down....seriously)  1383!!!!!!!!!!!!!!!!!!!!!!!!!!!! :o  Up from 630's a month ago.  Just SEEING Dr. F raised her t-cells ;D.  She's still getting off Zerit.

Chol.: 194   Triglyserides: 248
These tests were done non-fasting and about 15 minutes after eating lunch at Bob Evans ::)

I'm doing a bit better.  It's not the prospect of pneumonia that had me worried.  It's the fact that they're not sure what the masses are that are scattered about my lungs.  But, worry will not change one thing, so I've chosen not to.  I'm resting as much as I can and taking my meds like a good girl.

Have a great weekend!  Love to you all!

Mum
« Last Edit: April 17, 2009, 05:49:01 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 Longislander

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  • Posts: 2,486
Re: Mini update
« Reply #160 on: April 17, 2009, 04:50:19 PM »
totally jealous of those T-cells!! ;D

You're right about worrying, but do take good care of yourself and get as much rest as possible!
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 minismom

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Re: Mini update
« Reply #161 on: April 17, 2009, 06:04:54 PM »
I forgot to add that she went to the dentist today.  She has a couple of cavities that will be taken care of in a couple of weeks, after her EKG.  Because of her murmur, they pre-dosed her with Amoxil (x4) to prevent infection.  I didn't know that most of the veins in your mouth lead to your heart.  Anyway, they wanted to make sure that if she bled, the oral cooties wouldn't seep into her heart.  Probably an overkill, but I was glad they were thinking.  She'll take a dose of antibiotics an hour before her teeth are filled, too.

However, she ate a wondeful dinner, then threw it all up.  I'm not sure if it's from the Amoxil, but I'm awfully suspect.  It was about 2 1/2 hours after she was given the meds.  Now she's laying beside me sleeping.  It may be because she had the meds on an empty stomach - I was never told she'd have a pre-dose of anything.  She's never done this before with antibiotics. 

Of course, being Mini the veracious eater, she simply could have eaten too much.  But, again, it's never bothered her before.  Who knows?  Certainly not me. 


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

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Re: Mini update
« Reply #162 on: April 20, 2009, 07:52:56 AM »
Life is moving forward.  The next few days promise little more than rain and cold temps (highs in the 50's).  My lungs aren't getting much better.  Better temps expected the end of the week.

Mim is doing a bit better.  Still fussy and foggy, but in good spirits.  Her EKG is scheduled for Thursday, but we won't have the results until sometime early next week.  Next Monday she'll have 2 cavities filled.  We've talked about it and she's OK with it.  Just a bit miffed that she can't have a Happy Meal after.  Still waiting for Dr. F to let me know whether she needs to be pre-medicated for the procedure.  I still think it's an overkill.

As always, I'll let you all know as soon as I do.

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 RapidRod

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Re: Mini update
« Reply #163 on: April 20, 2009, 08:37:45 AM »
Quote
Just a bit miffed that she can't have a Happy Meal after.  Still waiting for Dr. F to let me know whether she needs to be pre-medicated for the procedure.

Heck yes and get bubblegum favored gas too. Numb them gums before sticking them needles in there. Does it show I don't like dentists?  :D

Offline AlanBama

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  • Alabama: the 'other' 3rd World Country!
Re: Mini update
« Reply #164 on: April 20, 2009, 10:05:09 AM »
With her T-cells, I personally think the pre-dosing is unnecessary....I've lied a couple of times when I went to UAB's Dental School for work, and they asked me if I had followed "pre-dosing procedures".
DUH - you're there, you're sitting in that dentist's chair for the first time, how could you pre-dose?  I guess they just assume all of us with AIDS have a variety of antibiotics laying around the house....

So "yes, I took my pre-dose".  Whatever.....

Hugs,  Alan

Hope you feel better soon!

PS - not a disclaimer for all pre-dosing!   I contracted bacterial endocarditis when I had single digit T-cells, so if your T's are low, before dental work you probably do need it!
"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 minismom

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Re: Mini update
« Reply #165 on: April 20, 2009, 10:39:36 AM »
Alan, they said that the pre-dose was because of her heart, not her HIV. The hygenist said that the veins in the gums lead to the heart.  If her gums should bleed, then the germs in her mouth could travel through the veins and into her heart.  I didn't argue.  However, after having her throw up everything 2 hours after taking the meds (and what seemed to me an over-done high dose) and her sleeping for 10hrs straight, I'm thinking they are unnecessary.

I'm inclined, as you were, to just say "yeah, whatever, sure she did."  However, she'd be right behind me saying, "What meds?  I didn't take any meds before we left the house."  :-\  She won't be knocked out for the fillings - just numbed up.  I'll be with her, she'll have her MP3 player to listen to, I think she'll be fine.  Besides, she'll have a great story to tell.

Rod, I'm horrified of needles!   The suggestion Thursday that I have a shot of antibiotic put me in a cold sweat, panic attack, tears, mumbling, you name it.  But, for some odd ball reason, I DON'T mind shots in the mouth.  I HATE doctors, but don't mind the dentist.  Go figure.

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 AndyArrow

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  • Posts: 1,196
Re: Mini update
« Reply #166 on: April 21, 2009, 07:01:09 AM »
A big HURRAY for Mini's T-cell count.

I understand wanting to ditch the anti-biotics but I guess it depends on her heart.  I have a friend who has an artificial heart valve (because of a congenital birth defect) but is otherwise healthy who always has to pre-dose before a trip to the dentist ... even if it's just a cleaning.

I hope you start feeling better soon!
AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline YaKaMein

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  • Posts: 368
Re: Mini update
« Reply #167 on: April 23, 2009, 11:51:24 PM »
Mum,
Am so glad for Mini's new care. Now, make sure someone is taking good care of YOU.
Big hugs, YaKa
09/11 Endocrine Consult
08/11 CD4 328 14.9% VL 0
 Disc'd Bactrim DEXA -3.1 Tscore
03/11 CD4 338 14.7% VL 0
11/10 CD4 300 14.3% VL 0 <20copies
07/10 CD4 336 14.0% VL 0 DEXA -2.7 Tscore
03/10 CD4 308 13.4% VL 0 Vit D normal
01/10 Began FOTO
11/09 CD4 274 13.7% VL 0 Chol 173 Trig 131
07/09 CD4 324 13.5% VL 0 DEXA -3.1 Tscore lumbar
03/09 CD4 207 10.9% VL 0
11/08 CD4 227 10.3% VL 0 Chol 176 Trig 156
04/08 CD4 228 9.5% VL 0
01/08 CD4 194 9.0% VL 0
09/07 CD4 176 8.3% VL 0
03/07 CD4 130 9.5% VL 0 Chol 261  Trig 227
12/06 CD4 109 6.4% VL 0
09/06 CD4  88 5.5% VL und desens'd rtd to Bactrim
08/06  Began Atripla
07/06 CD4  59 5.0% VL 145 Chol 117 Trig 104
06/06  Bactrim rash, X2 Dapsone
 EFV & Truvada Chol 128 Trig 131
05/06 CD4  6 (2.0%) VL 78667 only V179D mutation Dx PC MAC

Offline minismom

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Re: Mini update
« Reply #168 on: April 24, 2009, 06:12:35 AM »
You are all officially invited to our 1st (and only) Zerit burning party!  Dr. F called us (and e-mailed us) yesterday to let us know that Mim's enzyme test came out negative, so today she is officially OFF Zerit!  Her new combo is Epzicom + Kaletra.  She'll do 1/2 pill of Epzicom in the am and 1/2 in the evening for 3 days, then go to 1 pill in the morning.  Her Kaletra is still twice a day.  She'll go back to Dr. F on 5/20 for more blood work and a check-up. 

Yesterday was also her echo.  They took 117 pictures of her heart over an hour and a half period.  The way she had to lay and twist herself, her feet kept falling asleep.  But, she was a trooper and made it through the whole ordeal without a break.  The hardest part was getting her to stop talking so the tech wouldn't lose the picture. Then cardiologist came in, took a peak and more pictures.  She let us know that Mim will NOT need to be pre-dosed for procedures.  The official report will be sent to Dr. F today - but all looks good.

Mim has her 1st scrimmage game tonight against her cousin's team.  Tomorrow is opening day for baseball in our town and all 6 kids have games.  Highs near 80 with lots of sun. 8) (finally!). 

I am doing better.  Lungs still feel a bit full, however.  I have 2 more days on antibiotics, 4 more days of prednisone, and 6 more days of Dyflucan.  Repeat x-rays 2wks from yesterday.  I'll let you know.

Have a wonderful 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 Ann

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    • Num is sum qui mentiar tibi?
Re: Mini update
« Reply #169 on: April 24, 2009, 07:16:48 AM »
Burn, baby, BURN!

Keep the good news coming! Fantastic stuff.

Hugs to the family,
Ann
xxx
Condoms are a girl's best friend

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"...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 Robert

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Re: Mini update
« Reply #170 on: April 24, 2009, 11:36:02 AM »

miniandfamily.

have a great time at the ball game.  It's been a long spring but now it's time to 'play ball.'

robert
..........

Offline minismom

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Re: Mini update
« Reply #171 on: April 24, 2009, 03:28:04 PM »
Long spring??  We're barely out of winter.  We had freezing temps and snow the beginning of the week.  Opening day usually finds the town in sweats and coats dodging rain and /or sleet.  It'll be nice to sit out in the warm sun enjoying a full day of BBQs and ball games.  Gatorade instead of hot chocolate. 

Ann, you have no idea how happy we are.  Mim's EEG has been rescheduled for 5/18.  We'll have all of her tests and results in before we see Dr. F on the 20th.  Then after that, I don't want to THINK of another doctor until after Boston. (speaking of which, have you all ordered your HOPE bracelets yet?)

And, I made yet another mistake.  She only takes 1/2 of an Epzicom for 3 days, not 1/2 in the am and 1/2 in the pm.  Only 3 more days of Prednisone, then I should be coherant once again.  We're going to do 1/2 pill for 4 days so we don't have 1/2 a pill floating around.  I like things even - that's why we don't have 7 kids (but we could have 8  ;D)

Have a wonderful weekend!  If I can figure out how, I'll post pictures of Mim's first ball game. 

Much love to you all!
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 Longislander

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Re: Mini update
« Reply #172 on: April 24, 2009, 05:09:47 PM »
I can't think of a better way to kick off this beautiful spring weekend ( finally! ) than to read all this good news!

Have a great time at all the games, mum, but be easy on your lungs with all the screaming!


Paul
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 minismom

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Re: Mini update
« Reply #173 on: April 26, 2009, 06:49:59 AM »
We made it (whew!).  It was a crazy, hot day and I personally am glad it's over.  The opening ceremonies were really cool.  There were about 200 kids on the various teams (ages 3 - 13) and they were very much center stage.  Our kids make up parts of teams on all 3 levels (t-ball, coaches pitch, and minor league).  They had games at 11:30, 1:15, and 5pm.  We left the house at 8:30am and got home at 8pm.  Kids were in bed by 9, I was asleep on the couch by 9:15. 

T-ball doesn't keep score, so of course our team won ;).  Mim and #2's team won their game 11 to 2!  Both my kids struck out, though.  By that time, Mim was hot, tired, and said she just wanted to go home.  But, she didn't quit - that's what's important.  Our oldest son's team lost 4 to 6.  But, that's OK, too.  They played a good game.

Tomorrow Mim will find herself in the dentist chair having 2 cavities taken care of.  She's excited about having shots in her mouth, but upset that she won't get a bandaide.  What's the deal with kids and bandaides?  I'm just glad she won't have to be pre-dosed.

So far so good with her Epzicom.  This is day 3 of her 1/2 pill.  I'm not sure what side-effects to watch for but she has no rashes, her appetite is good and her sleep patterns haven't changed.  Let's just keep praying it stays that way.

Hope everyone is having a wonderful weekend.

Mum

edited to add: Paul, Hubby thinks Dr. F is married.  I think he's single, doesn't wear a ring, but I think he mentioned a daughter.  He wears purple and drives a purple car - my favorite color.  And, he's a Star Trek fan - just like my Hubby.  Not sure how old he is, but I'd say upper 40's to early 50's.  It may be worth a trip to Ohio ;0)
« Last Edit: April 26, 2009, 06:59:53 AM by minismom »
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Offline Ann

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Re: Mini update
« Reply #174 on: April 26, 2009, 08:11:50 AM »
Hey Mum, you can tell Mini that the only dental band-aids they make are designed to go across the lips.  :-X  ;D See if she still wants one then! ;) (tell her I'm only teasing!) Excited about shots in the MOUTH?!?!  Um, ok, sure thing! ::)  :D

I'm so happy to hear that it's so far, so good with the Epzicon. Fingers crossed! :)

Hugs,
Ann
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Offline Longislander

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Re: Mini update
« Reply #175 on: April 27, 2009, 12:04:08 AM »
Quote
edited to add: Paul, Hubby thinks Dr. F is married.  I think he's single, doesn't wear a ring, but I think he mentioned a daughter.  He wears purple and drives a purple car - my favorite color.  And, he's a Star Trek fan - just like my Hubby.  Not sure how old he is, but I'd say upper 40's to early 50's.  It may be worth a trip to Ohio ;0)

LOL, maybe the daughter is from his wayward youth!??  But is he handsome? I've got a car......
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 minismom

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Re: Mini update
« Reply #176 on: April 29, 2009, 08:35:58 AM »
Mim did really good with the dentist.  She's now decided that she definately does NOT like shots in the mouth.  The dentist gelled her gums at 9:10 and by 9:30 we were on our way home.  I expected some down time and a dose of Tylenol as feeling came back.  But, she was inside 2 minutes before she ran outside to play.  She goes back tomorrow to fill a cavity on her upper left side, then Tuesday to fill one on her lower left side.  The dentist won't numb more than 1 quadrant at a time in kids.  He says it keeps them from biting their lips and tongue. (not to mention padding the bill). 

Dr. F called yesterday to see how Mim was doing on her Epzicom.  I think he's just sucking up so I'll make him some more truffles. ;)  She's doing perfectly.  Today is her second day on a full pill and she's having no sdie-effects at all. 

Next week will see us in dress rehersals M - Th for our concert Friday night.  Getting close and exciting for all of us. 

We're off for an exciting day of grocery and shoe shopping.  Oh, joy! ::)

Have a good one!
Mum
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Offline Ann

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Re: Mini update
« Reply #177 on: April 29, 2009, 08:39:58 AM »
Mum, it's such a relief that Mini is tolerating the Epzicom well. It's about time that kid had a break! YAY!

Hugs to the whole family,
Ann
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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 Inchlingblue

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Re: Mini update
« Reply #178 on: April 29, 2009, 11:51:33 AM »
Woo hoo for Mini@!

I know everyone is different and there are definitely differences between kids and adults when it comes to medications but for whatever it's worth, I have a friend taking Epzicom (along with Reyataz/Norvir) and he's doing great. He started with a high viral load (800k) and Tcells around 250 about 6 months ago and he's now almost undetectable and Tcells are about 750, and no side effects.

Epzicom ain't bad at all.

Offline Longislander

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Re: Mini update
« Reply #179 on: April 29, 2009, 10:36:48 PM »
Great to hear she's tolerating the meds/dentist trips well!
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%
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Offline minismom

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Re: Mini update
« Reply #180 on: May 01, 2009, 06:48:24 AM »
We went ahead yesterday and had the fillings done on the left and right front.  The dentist was OK with it because it wasn't top and bottom.  He said there was less of a chance Mim would bite her cheek or tongue if the top of her mouth was numb.  I was just happy we didn't have to go back on Tuesday.  She didn't moan as much about the shots.  When I told her I was proud of her for not yelling, she said, "It didn't do me any good last time.  It wouldn't have done me any good this time."  Well, she's right.

Her ball team won their game last night.  They're 3 - 0.  They came back from a score of 5 to 0 in the 4th inning to win it 6 to 7 in the 6th inning.  The coach and I are going to have a discussion, however.  There are 4 kids (2 of them mine) who sit out every other inning.  The other kids (including his son and nephew) get to play every inning and bat every round.  These 4 kids generally get to hit once the entire game.  My little man hit twice on Tuesday and scored 2 points.  Mim hit last night, got to 1st base, then the coach's son who can do no wrong hit the ball to the 2nd baseman.  Mim got out then sat the next batting round.  I think every kid should have a turn on the bench and a turn to miss a bat.

Just an FYI: our ex-Doc has yet to contact us.  She has no idea that Mim is seeing a new PID.  I have a letter ready to send to the cheif of staff, chief of peds medicine, and to her.  I was hoping to wait until we were contacted to make up the appointment she canceled back in March.  Looks like I'll just have to send it.  Debate is still going as to wether we should wait until Mim sees the eye doctor in May.  He happens to be ex-Doc's husband.

I'll let you know what hapens.

Mum
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Offline mjmel

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Re: Mini update
« Reply #181 on: May 01, 2009, 04:08:02 PM »

edited to add: Paul, Hubby thinks Dr. F is married.  I think he's single, doesn't wear a ring, but I think he mentioned a daughter.  He wears purple and drives a purple car - my favorite color.  And, he's a Star Trek fan - just like my Hubby.  Not sure how old he is, but I'd say upper 40's to early 50's.  It may be worth a trip to Ohio ;0)

Somehow I missed this part (quoted above).

Hubby is correct. Has a partner.

Mike

Offline minismom

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Re: Mini update
« Reply #182 on: May 03, 2009, 06:49:00 AM »
I figured he was taken.  A man like that doesn't stay single for long ;).  But, Mike, you must solve the debate: does he have a daughter?  I don't remember him mentioning one, but Hubby swears he did.  You are the tie-breaker.

Just a bit of intresting info: We have had more written and verbal communication (outside of appointments) with Dr. F and / or his nurse (usually both) than we have had with the ex-PID in
8 1/2 years. 

Mum
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Offline minismom

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Re: Mini update
« Reply #183 on: May 11, 2009, 07:20:41 AM »
We made it through last week, although barely.  We left our house around 4:15p for dress rehersal and arrived home between 10 and 11 M-Th.  The concert was Friday and everything came together beautifully.  It was hectic - tons of costume changes - but we figured it out. 

Mim did very well through it all.  She struggled with a couple of dances, but came through smiling regardless.  By the last dance, she was exhausted.  Her whole body looked drained.  By Saturday morning, she was ready to do it all again.  Fortunately, we didn't have to.  My body is still trying to recover.

Mim's legs are starting to turn again.  Her gait and balance have been getting worse, little by little, over time.  She has her EEG and  sees her neurologist next week. I'm afraid we'll be discussing putting her back in leg braces.  It's not something any of us want, especially her, but knew it would happen eventually.  Well, "eventually" is here.  No doubt she'll get through it - she always does.

Thursday she sees her eye specialist (ex-Doc's hubby - should be intresting). We're still trying to peice together what's causing her tracking problems.  We should have an answer by the end of this month.  Fingers crossed.

I hope all of you had a wonderful weekend.  Will let you know how things go.

Much love,
Mum
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Offline minismom

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Re: Mini update
« Reply #184 on: May 12, 2009, 01:30:58 PM »
Just a real quick update / change of plans.  Mim will NOT be going to the eye specialist on Thurs.  There are 2 very good reasons for it.  First, he's her ex-PID's husband.  Second, he's seen her every 3 - 6 mths since she was 8mths old and has never tested her for tracking issues, let alone diagnosed her with them.  If you remember, it was her ENT that noticed the problem.

Instead, on June 4th we will take her to see a nationally reknown Occupational Opthomologist named Dr. Veronneau.  He's done excellent work in the field using prism glasses and computer based vision therapy.  I'm very excited about being able to get her in.  We'll see what happens.

Next week she has her EEG and sees neuro. on Monday, ENT on Tues., and Dr. F on Wednesday.  Then the 25th we are off on a week-long family vacation to Hershey, PA.  13 days and counting....

Mum
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Offline Inchlingblue

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Re: Mini update
« Reply #185 on: May 12, 2009, 01:46:43 PM »
Just a real quick update / change of plans.  Mim will NOT be going to the eye specialist on Thurs.  There are 2 very good reasons for it.  First, he's her ex-PID's husband.  Second, he's seen her every 3 - 6 mths since she was 8mths old and has never tested her for tracking issues, let alone diagnosed her with them.  If you remember, it was her ENT that noticed the problem.

When you had said he is her ex-PID's husband I didn't think it was a good idea to keep seeing him but it wasn't my place to say anything. Add to that the fact that he's been seeing her for so long and done a mediocre job at best and that equals: time for a change!@

I'm very happy for you guys.......and have a great time in Hershey ;)

Offline Longislander

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Re: Mini update
« Reply #186 on: May 12, 2009, 08:35:27 PM »
Hi Mum,

Very happy to hear that you were able to get her in with another great Dr!!  Lots of appts, I hope all goes well.

Good you have that vacation to look forward to during all of this-I'm sure you'll all love it!

Paul
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
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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%
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Offline Robert

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Re: Mini update
« Reply #187 on: May 12, 2009, 09:29:46 PM »

hi mim and mom

good to hear you're going to see a different eye doctor.  ARe you going to follow through on your complaint about your ex PID?  If you do, you can add a PS and include a note about her incompetant husband.  Just don't let that stress you out and sap all your energy.  You have a good Dr. now.  Focus on that.

Ummmmm.. Hershey?  Can you say chocolate?  I can !!!.  I know there's more to the place than just chocolate but why don't you just drop me off at the chocolate factory?  You can pick me up on your way out of town.  ;D

robert
..........

Offline minismom

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Re: Mini update
« Reply #188 on: May 13, 2009, 09:40:16 PM »
Hun, I don't care what else there is in Hershey - just point me to the chocolate and Mum's a happy camper.  I'm looking forward to spending some time with Hubby and the kids away from the chaos we've been engulfed in lately.

Robert, yes, I'm still in the process of writing the letter.  I'm including specific incidences with dates.  I've kept notebooks of appointments and phone conversations since Mim was born.  It's hard keeping emotion out of it.  I'm just so happy that we've found a new (wonderful) team.
 
I asked Mim today if the words on the page were blurry.  She said no, they just "dance" around and after a little while the letters grow shadows. She said that's why she gets so confused and lost.  I'm thinking that could possibly cause her headaches also. I've been reading the book "When Your Child Struggles" and it describes Mim to a "T".  I can't wait to see what Dr. V says.

Thank you all for your continued support.  It really does mean the world to us.

Mum
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Offline Ann

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Re: Mini update
« Reply #189 on: May 14, 2009, 04:04:00 AM »
Mum, I'm so happy to hear that you're pursuing a complaint against this poor excuse for a doctor. And remember, it's not about vengeance, it's about saving some other kid(s) from her incompetence. Somebody's got to stop her!

Have fun in Hershey!

Ann
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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 AndyArrow

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Re: Mini update
« Reply #190 on: May 15, 2009, 05:10:55 AM »
Ditto to everything Ann just said ... especially the part about having fun in Hershey!!!
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline minismom

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Re: Mini update
« Reply #191 on: May 17, 2009, 06:38:03 AM »
Yesterday was a mixed-bag.  Our oldest son had a ball game that his team lost 11 to 14.  The 2hr game ended up lasting 3 hours due to a rain delay in the 3rd inning.  He pitched the 2nd half of the game, walking no one and striking out 3 people. ;D  The last inning he was walked to 1st, then stole 2nd, 3rd, and home (in one play).  Very exciting indeedy.

Mim and our 2nd son had a game just after.  1st inning, a ball bounced out of her glove and smacked her in the chin.  There were tears, a diet Coke, and a free popcycle.  All was well.  Their team won 12 to 2. 

In the middle of the game, she came over to sit in my lap.  She looked at me very seriously and told me that everyone thinks she's not paying attention or trying hard when she misses a ball or can't hit it right.  But it's not true.  When the ball is coming at her, it turns into 4 balls.  How is she supposed to know which one to catch?  Then she asked me what I do to make the 4 balls one ball again.  I wanted to cry.  I simply told her that I only see 1 ball.  But, that's the kind of thing she needs to be sure to tell Dr. V when we see him.  He'll be the one who can help her.  Satisfied, she jumped down and rejoined her team in the dugout.

1 ball "turning" into 4.  Words that "dance" around and have shadows.  I think we're finally getting somewhere.

Tomorrow morning, she has an EEG done at 10am, then we see her neurologist at 12:30 for the results. We'll no sooner get home then run back out for ball games.  The whole gang will be playing at the same time.

Hershey...8 days and counting!

Have a wonderful Sunday!
Mum

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Offline Longislander

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Re: Mini update
« Reply #192 on: May 17, 2009, 06:37:26 PM »
Hey mum,
Congrats on all the fun, good stuff in that last post! I just wanted you to know it damn near broke my heart when you wrote about the 4 balls. I pray they get this figured out quick!

I wonder if they have something like chocolate baths at Hershey?? ;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 minismom

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Re: Mini update
« Reply #193 on: May 21, 2009, 02:50:56 PM »
Our marathon week of appointments is finally over. 

Monday's EEG came back "normal".  A relief, but not a suprise.  The more I research her vision problems, the more I'm believing it is the root cause of her headache / dizzy / falling / "shutting down" issues.  As a matter of a fact, on the way out of the office, Mim nearly ran into the wall.  She laughed and said, "Whoops, there goes that double vision thing again.  I thought the door was right there."  She scootched over a couple of feet and walked out the door.

Tuesday's ENT appointment was also non-eventful.  The swollen lymph node on the left of her neck has shrunk considerably.  Mim explained to Dr. D what things look like to her and I could see the lightbulb go off.  He looked at me and we just smiled at each other.  He agrees with me.  About time SOMEBODY did!

Wednesday we took a beautiful 314 mile drive to Chillicothe to see Dr. F.  It's the 1st time we've seen him when it wasn't raining and cold.  He agreed that while the swelling had gone down on the left lymph node, there were now several smaller knots that will need to be watched.  Also, one under her left armpit is now swollen.  And, she's somehow managed to lose 2lbs.  Not too alarming considering she was in winter clothes the last 2 weigh checks and only in  a cotton t-shirt and shorts for this one.  She's also been dancing and playing ball over the last month.  Still, we need to make sure she puts the weight back on.  Otherwise, Dr. F will have to change the strength of her Epzicom which may not be strong enough to keep her virus at bay.  We had blood work yesterday and we should have the results in a couple of days.  We go back in 8wks for another check-up.

Something else happened that made Hubby and I both laugh.   Dr. F. got about half of Mim's old records from her previous doctor.  He said that as he read through them, he found some very contradictory advice / findings going on.  He also found some things that plain didn't make sense.  YOU THINK?? Suddenly I'm not so stupid.

2 ballgames tonight, 1 more tomorrow night, then I can concentrate on packing for Hershey.  We've called ahead and asked that extra shifts be scheduled to accomodate my fevered chocolate addiction ;D

Have a great Thursday!
Mum
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Offline minismom

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Re: Mini update
« Reply #194 on: May 23, 2009, 07:28:56 AM »
Dr. F's office called yesterday with some of her lab numbers.

CD 4: 1205 (down a bit, but hardly complaining)

CD4%: 50.2% (never been this high before)

Red blood count: 3.49 (a bit low)

Total Cholesterol: 172

LDL: 62         HDL: 34       Ratio: 1.8

Triglycerides: 378 (HOLY CRAP!!!)

Overall, I'd say the Epzicom is doing the job quite nicely.  This is the lowest her LDL has ever been and the highest her Tris have ever been.  She still needs to gain 3lbs and has to do it while maintaining a low LDL, not raising her cholesterol, and lowering her tris.  Besides eating hay, anyone have any suggestions?

Hershey: 2 days and counting down!

Mum
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Offline newt

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Re: Mini update
« Reply #195 on: May 23, 2009, 10:41:59 AM »
Re: weight, get a bit older ;-)

Her CD4 count will drop off as she gets old, kids have mor od the damn things, so no worries

This is a good set of results.

- matt
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Offline Inchlingblue

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Re: Mini update
« Reply #196 on: May 23, 2009, 12:54:45 PM »
 She still needs to gain 3lbs and has to do it while maintaining a low LDL, not raising her cholesterol, and lowering her tris.  Besides eating hay, anyone have any suggestions?
 

Omega oils, mainly found in fish, especially tuna, mackerel, salmon, sardines. Of course you don't want to overdo it on the fish (assuming she even likes it, there are concerns over too much mercury) so there are capsules. These are also good for supporting healthy brain function. Costco has several good quality ones to choose from and decent prices, considering the quantities.

Flaxseeds also are good as is fiber. I like to make smoothies in which I add ground flaxseed and psyllium husk. Costco also has good quality and well-priced flaxseed oil caps. You could also sprinkle actual flaxseeds on cereal.

Exercise of course is also key but it sounds like Mim is an active little girl.

The American Heart Association has information specifically geared for children:

http://www.americanheart.org/presenter.jhtml?identifier=1477
« Last Edit: May 23, 2009, 12:58:48 PM by Inchlingblue »

Offline minismom

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Re: Mini update
« Reply #197 on: May 24, 2009, 06:16:20 AM »
Newt, that's exactly what my mum said about her weight.  Just wait until she's in her mid-20's and she'll gain 5 pounds just smelling chocolate or driving by McDonald's.  I haven't noticed her eating any less than normal.  She tends to eat enormous amounts of food, but no snacks between meals or before bed. There's the odd bit of popcorn (steam popped, no butter or salt) when we're watching a movie at home.

I'm thrilled with her results.  They've rebounded nicely after her downward trend.  I just wish her stinkin' tris would go down.

Now, a different issue has come up. When we were at the mall yesterday getting the last few things for our trip, Mim asked if we could sit down - her legs were getting tired.  No sooner did we sit then she jumped back up and started doing this wierd stretchy looking thing.  I asked what was wrong and she said that sometimes her bones feel like they are going to break.  But, if she stops and stretches some, then they feel better for a few minutes and she can move.  She said he happens in her hips, knees, elbows, and her spine.  One minute they feel like they can move, then the next minute they won't.  She said it happens when she lays down, too.  Huh.  I've shot an email off to Dr. F explaining what's going on.  We'll take the phone number of the ortho doc with us and call on the way to Hershey tomorrow.  If need be, we'll call Dr. F's office and have him make the referral.  This is going to be a long summer.

Take care of yourselves and each other.  See you in a week!

Hershey: pulling out at 9am tomorrow morning 8)

Mum
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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 Robert

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Re: Mini update
« Reply #198 on: May 24, 2009, 10:57:59 AM »
mum


it has always impressed how aware mini is of her body.  she is one sharp cookie.

have a great time in hershey.   don't get lost in the chocolate factory.

robt
..........

Offline minismom

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Re: Mini update
« Reply #199 on: May 29, 2009, 06:21:56 PM »
We made it home this afternoon just before 3pm.  In short, the weather was frigid, the mattresses were rock hard, but the company (hubby and the kids) was amazing, the chocolate divine, and the memories unforgetable.  We even made s'mores in the rain. ;D

We have a few appointments this week before heading for the beach next Sunday (June 7th).  Eventually, I'll get a web-album together and email the password so you all can take a peek. 

Thank you for the well-wishes, PM's, and encouraging words.

Mum

edited because I forgot my name.

« Last Edit: May 30, 2009, 06:13:55 AM 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

 


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