Project Hopeful on Today Show

10 Mar

Please watch this interview with the Twietmeyer’s if you missed it on NBC.  It is really great!

Media.

Peg Tube & Pedisure 1.5

22 Feb

First of all, I am going to start using my daughter’s middle name (Noel) instead of always saying “my daughter.”  She actually goes by her beautiful Ethiopian name, but I will use her middle name here.

I thought I would write a little about our experience with Noel’s peg tube and weight issues.  We got her peg tube in December to help with giving her HIV and seizure medications and to help with weight gain.  After the getting through the yucky stuff at the hospital and the initial sadness that we had to do this, a peg tube has been helpful. It completely took away our medications problems.  We get all her meds down 100% of the time.  Yay!

However, it has really not helped our weight issues as much as we had hoped for, or at least not yet.  Noel has actually lost weight again this month.  She has not been able to tolerate enough Pedisure to put on weight.  They wanted us to give her 4 (8oz) cans a day.  But she throws up if we give her over 14oz  in a whole day.  Our primary doctor want us to go back to the GI doctor for more testing to see if she has other GI problems like delayed emptying.  Another draw back to the peg tube is that she basically is not eating anything.  Feeding her through her tube keeps her full enough that she has no desire to eat at all. 

We had to go to increasing her calories since she has not been able to tolerate a larger volume of Pedisure.  This last week we have been mixing a package of Carnation Instant Breakfast and Benecalorie into her daily goal of 16 oz of Pedisure as suggested by our nutritionist.    Our doctor also recommended switching to Pedisure 1.5 (which we had to order) and it should be coming tomorrow.  Hopefully Noel will put some weight on with Pedisure 1.5, or the next thing they want to try is a feeding pump at night.  We can’t imagine trying to get Noel to sleep attached to a pump.    We hope they will ultimately be able to find something to explain her eating issues.  Maybe there is a physical reason she does not want to eat.

I am grateful for the peg tube, but have to admit I am sad about it.  I am sad that Noel has to have this “thing” poking out of her.  It seems so unnatural.  It seems so medical.  It seems so sad.  A peg tube in a little belly is sad, and yet it is necessary.

What would you do?

18 Feb

ABC’s What Would You Do? tackled the question on tonight’s episode…What would you do if you witnessed AIDS discrimination?  I watch most of this, and it was both interesting and sad.   It showed that HIV stigma and ignorance is alive and well.  They based their scenario on this 2009 Kaiser Survey.  Some people spoke up to defend the HIV actor, but most throughout the day did not.

If you missed the show, read or watch more about it on ABC.

And if you need to know more about how HIV is spread, please educate yourself and watch the Truth Pandemic Video.

Perfect Love Drives Out Fear

14 Feb

Great Post- A Must Read!

The Ethiopian Doctor

31 Jan

                                             In my last post I shared about having to take our daughter to the ER for seizures.  It was on 12-1-10, World’s Aids Day.  I thought it was interesting to be at the ER on World Aids Day.   I was given lots of opportunities to talk with doctors and nurses about “our story.”  A few young doctors in their residency asked when did I find out she had HIV…like did I know before I adopted her.  One doctor gave me a high-five when I told him we knew we were adopting a HIV positive child.  (It was a little weird, but neat at the same time.)  All of the nurses and doctors were so kind and sweet to my daughter.  This was a pleasant surprise.

If you remember from this post, I used to drive four hours to Dallas to the ARMS clinic, because of a bad experience with this children’s hospital that is an hour away.  When your child is having seizures you don’t drive to Dallas.  I had no choice but to give this closer hospital a chance.  I later learned that the PID doctors that had refused to help with our embassy paperwork had left or retired.  During our stay I never felt like anyone acted ignorant about HIV.  Everyone was supportive and kind.  (We now feel 100% comfortable with our closer hospital and PID clinic and will no longer drive to Dallas.  We loved working with Dr. Barton at the ARMS clinic, but the drive was getting difficult.)

The most memorable doctor we had during our hospital stay was an Ethiopian doctor.  It was about 3:00 AM when we admitted to our hospital room.  My daughter had just fallen asleep and was finally resting after hours of screaming in the ER.   So this doctor comes in and starts asking questions to help asses this new patient sent to her floor.  I tell her about the seizure and about that our daughter is HIV positive and was adopted from Ethiopia.  Then she said, “I am from Ethiopia.”  She paused and then started speaking softly.  She said she was having a hard time controlling her emotions.  She said that she was so touched that we would adopt a HIV child.  At this point we were both crying.  (I was so exhausted and emotionally drained.  It did not take much to get me crying.)  She kept saying thank you, thank you.  She told me some about caring for HIV/AIDS patients back in Ethiopia.  She told me that she plans to return to Ethiopia once she finishes her residency.  She also shared that she has a foster son back home that has HIV and has lost both of his parents to AIDS.   It was a very touching conversation that I will never forget.

Talking with this amazing Ethiopian woman made me think that we, as Americans, don’t really get the HIV/AIDS crisis that part of the world faces.  I mean HIV/AIDS does not emotionally affect most Americans.  We have a World’s AIDS day for education, but then go back to not thinking about it.  Other countries are faced with the AIDS crisis everyday.  Most Americans will never look into the eyes of a child who has lost both parents to AIDS.  This doctor has.  Most American doctors won’t know or understand HIV/AIDS like this Ethiopian doctor, who has lived to help HIV/AIDS patients and plans to return to Ethiopia to help some more.

Encouraging your HIV adoption

22 Jan

I just want to encourage anyone contemplating on adopting an HIV child. Our daughter has been home nearly a year and just turned 6. We have been fortunate to have a very healthy girl who contracted HIV from her mother during childbirth. We have had NO medical issues with her whatsoever and have her blood tested every three months. Her CD4 count is 620 and her viral load had plummeted to 7500. These numbers go up and down with every appointment. Each HIV specialist has their own idea of when it’s time to get them on medication. Our doctor feels she is extremely healthy, so there is no need to start HIV meds. We have 5 other children- all of whom have been educated about HIV and do not feel threatened by their sister’s condition. Honestly, it makes those who know our beautiful, sweet daughter love her more!

Our HIV Adoption- 1st year

12 Jan

Last week we celebrated one year since we brought our daughter home from Ethiopia.  I have to say our first year was much harder than we anticipated especially this last month.  When we researched about HIV, we felt it was all very doable not that big of a deal…your child takes medicine and goes to the doctor about 4 times a year.  We can do that.  Well, that has not been our story, and we are OK with that.  Our first year has been hard and expensive, but as Carolyn at Project Hopeful says, “It’s not about me!” 

Our daughter had way more medical stuff than we thought we could ever handle and yet we have NO REGRETS about adopting our daughter.  We love our daughter so much.  We can’t imagine not having her, and we can’t imagine her still living in an Ethiopian orphanage.  We love her so much.

So since our HIV adoption has not been the “typical” or “normal” situation, I have debated recently if I should still blog.  We started Precious and Positive to encourage others to consider HIV adoption.  So will our story hurt more than help???  I really don’t know.   

But for now I have decided to blog on to show others…that despite having a hard road with our HIV daughter that I am still sooooo passionate about HIV adoption.  Children with HIV need homes, they need  moms and dads, they need families.  They will have HIV and may have other health problems whether they are in an orphanage or in a home.  But in a family they have love and support and better medical care than they would receive in an orphanage. 

So here is an update…
We had a rough December.  On December 1st our daughter had to be hospitalized for seizures.  We were eating dinner that night when she had her first one and then she had four more at the hospital during our 3 day, 2 night stay.  She is now on Kepra and has not had any more seizures.

However, during her hospital stay she had an MRI that did not look good.  The MRI showed brain changes since her last MRI from April.  They wanted to do more testing for many different diseases that can cause brain changes and/or seizures.  They wanted to rule out that another infection could be affecting the brain, but they said they might not find anything.  They said that HIV will get the “blame” if they can not find anything else. 

So later in December they pulled spinal fluid and sent it off to the Mayo Clinic for testing.  We found out last week that everything they tested for came back negative.  So is this good news? We suppose.  HIV will get the “blame” for now.  But we are now left with the diagnoses of HIV Encephalopathy which doesn’t sound great.  We have been told her brain could become more stable or could get worse.  They say time will tell.  There is no way of knowing it is the HIV unless you did a brain biopsy which would really not help or change anything.  They did not recommend it and we of course did not want to put our daughter through that.   Our daughter will most likely continue to struggle with developmental issues and they are many unknowns about her future.  She will now be followed by a neurologist and have at least yearly MRIs.

We have grieved this last month.  We hate to see her go through all this stuff.  It is awful!  We are saddened that she may have life long mental struggles.  We really hate to even think about the worse case scenarios.  We have cried and prayed, and now more than a month later we are beginning to move back to “normal.”  I cannot think constantly about all her “what ifs” for now.  I need to be the best mother to her (and my other two) I can be, and to do that I have to trust God with her future.  I believe He is sovereign and controls all things, and I will choose to trust Him.

 She had one other health development this last month. Her doctors felt it was time for a peg tube to help with giving medicine and weight issues.  I had blogged about our daughter gaining weight on Megace and Reglan.  She ate great while on those medications, but about two weeks off the meds she was back to her old ways.  She would rather play with food than eat it.  She has slowly lost most of the weight that she had gain.  When we added her seizure medication, we had more problems trying to accurately give her all her liquid medications with her oral aversion.  I will blog later about the peg tube experience.  It has been helpful, but you have to get past some yucky things.

I guess that is it for now.  Lance and I laugh sometimes at our non-medical selves.  We can’t believe what we now know and can do.  We would have turned down a referral for a child with HIV AND seizures, physical and mental challenges, a peg tube, and feeding issues due to an oral aversion. 
And yet we don’t see or focus on all those things. 
We see our daughter and she is absolutely Precious!

If I Had HIV

1 Dec

If I had HIV or AIDS
would you accept me
talk to me
shake my hand
come to my house
sit next to me in church
eat at the same restaurant
use the same restroom
ride on the same bus
type on the same keyboard
swim in the same pool
work in the same office
attend the same school
because you are afraid
of getting the disease
or think I deserve the disease?

Then you are ignorant
about the truth
about the facts
about me. 

I do not have HIV or AIDS
but my daughter does.
She got it from her birth mother
who got it from a man who lied to her
or who raped her.
With medicine she can live
a long and happy life
go to the playground
go to school
get a job
get married
have children
and put no one at risk.

If you knew she had HIV
would you hug her
hold her hand
change her diaper
teach her in Sunday School
let your children play with her
come to her birthday parties
accept her as you would me?

Don’t be ignorant.
http://www.projecthopeful.org/truth-pandemic

Project HOPEFUL – Truth Pandemic

30 Nov

Project HOPEFUL and the Twietmeyer family are amazing!  They are having an incredible week.  Project HOPEFUL is doing so much to promote HIV adoption and end the social stigma associated with HIV.

The Twietmeyer’s are featured in the December 6th issue of People Magazine, which is in stores now.  People magazine dedicated 5 pages to tell their amazing story.  I was so excited to read it and loved the article.  The sweetest part for me was when their daughter with HIV was quoted as saying, “I tell people not to be afraid, they won’t get HIV by hugging me.  Children are dying because people aren’t helping.  They need families like mine.”

If that was not exciting enough, Project HOPEFUL has just reworked their website and launched new programs.  If you have not visited their website recently, please check it out.

They have a World AIDS Day campaign to fight against the stigma of HIV.  From PH website, “The Truth Pandemic Campaign was created to help combat social stigma through ongoing educational initiatives.”  Read about it and watch their 3 min. video and then pass it on to 5 friends so they can learn the facts too.  What better day to educate than tomorrow on World AIDS Day!   Lance and I wrote a small post that was posted on Project HOPEFUL’s blog today.  It was about our own disclosure dilemma.    Please spread the truth! 

Lastly, Carolyn Twietmeyer and her family will be featured tomorrow night on the CBS Evening News in honor of World AIDS Day.   We should all tune in to watch!

December 1st – World AIDS Day

26 Nov

Here are a few websites dedicated to this day of AIDS/ HIV awareness.

World Aids Day Campaign

Lights for Rights

World Aids Day (UK)