Tag Archives: HIV Adoption

MSNBC Article

4 Apr

More U.S. families adopting HIV-positive kids

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Heart towards Ethiopia

13 Mar

This week  my husband, Lance, is in Ethiopia on a mission trip with some of our college students from our church.  He will be leading pastor training in a church about 9 hours out of Addis until Thursday.  Then they will visit Noel’s former orphanage in Addis and on Friday they will be spending the whole day feeding and ministering to people with HIV/AIDS.   I wish I could have joined him on this trip, but I needed to stay home with the kiddos.

Noel has changed our lives in so many ways.  One of the ways she has is that Noel made the HIV/AIDS crisis personal to us.  An AWAA family, (one of my “bloggy friends”) talked about how orphans and people in poverty became personal to her family.  It was a great post.  It really made me think about how much my heart has changed for the person with HIV/AIDS.  Just about 3 years old I would have never of thought much about the people with HIV/AIDS.  Now I probably don’t go a day without pondering or praying for the crisis in some way. 

I think about all people affected by the virus, but really think about the little infants and children facing this illness without parents in an orphanage.  Noel’s body has had such a hard time recovering from the damage the HIV virus did to her that first year of life before medication.  She is also so delayed from her two years living in an orphanage.  However, Noel is remarkable.  She has a long way to go, but she has already overcome so many things.  She is an absolute delightful child.  We are so proud of her.  We can’t imagine not having her.  We think of all the other little “Noels” with HIV out there in desperate need of a better chance at life.

Ethiopia last week changed some things that would drastically slow down their adoption process.  Project Hopeful sent out an email that shared about this better than I can:

Project Hopeful has been greatly concerned about the recent turn of events in Ethiopian adoptions as the US State Department confirmed that the Ethiopian government plans to reduce international adoptions by up to 90% effective immediately. Some have estimated that this could increase the wait time for an orphan child to be adopted as much as seven years.

It is clear no orphan has that kind of time to spare. They all deserve families immediately. But for orphans with HIV/AIDS the wait could absolutely be the death of them. That’s because institutional life for children with HIV/AIDS is particularly brutal.  Orphanage living increases their chances of contracting secondary infections which can prove life threatening without proper medical care. The limited resources many orphanages face mean their ability to meet the needs of HIV+ children is handicapped. Project HOPEFUL has seen time and again that children who were on the brink of death in an orphanage thrive with the love and care only a family can provide.

This week especially my heart and prayers are turned towards Ethiopia.  I am praying for my husband, but I am also praying for the Ethiopian adoption process and for HIV orphans still there in need of families.

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.

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!

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!

National Adoption Day

20 Nov

November is Adoption Awareness Month.  Sunday, November 7th was Orphan Sunday when churches focus on the orphan care and bring light to the need for adoption and foster care.  Our church participated in Orphan Sunday and took up a coin offering, “Change for Orphans” that we are sending to Show Hope. 

Today is National Adoption Day.  This is from the National Adoption Day website…

“National Adoption Day is a national day of celebration of adoptive families and an opportunity for courts to open their doors and finalize the adoptions of children from foster care. Since 2000, more than 30,000 children have had their adoptions finalized on National Adoption Day. This year on November 20, families, adoption advocates, policymakers, judges and volunteers will come together and celebrate adoption in communities large and small all across the nation.”

The website had a twitter update that said they expect 4,500 foster care child to be adopted today.  How exciting!

I recently have been approached by three different people who were adopted themselves.  They asked me if I adopted my children, and then went on to share about their positive adoption stories with me.  One of the women (my Sonic car hop) told me that she had been in the system for years and did not know what would have happen to her if she had not been adopted.  She shared her joy that my children now had a family. 

We don’t know how the Lord will lead us in the future.  We still hope to adopt again in the future.  God continues to open our hearts to what would be right for our family.  We feel like our next adoption will be an older child.  On our trip to Ethiopia, we meet many older girls and boys waiting for a family so we somewhat feel we may go back to Ethiopia or Russia.  But we also think about the child living in foster care who are waiting to be adopted.   The need is great here and abroad. Children need to be raised up in families whether they are young or old, U.S. citizens or not, and HIV positive or HIV negative.   They all equally need a home.

Happy National Adoption Day!

Turning 3 and Home Therapy

13 Nov

Our sweet little one has turned three.    At age three, children in our state’s early intervention program transition from at home therapies to school programs.  When we started therapy many months ago, I knew by three we would not be ready to  not put our daughter in a school program, and so I asked the therapists  to please train me to be prepared to take over therapy.   They were happy to educate me.  Their program is designed to train the parents and yet they said most parents just want them to come in and do therapy with their child.

We are not chosing the school system (for now) for several reasons.  For one thing we are a homeschooling family, and I think dropping one child off at our local school would be difficult and confusing for our other children.  Secondly, our daughter continues to work through some sensory issues and sometimes experiences  anxiety away from home and her routine.  Thirdly, I really believe parents can make the biggest impact by integrating the therapy techniques into everyday life.   Fourthly, we have issues with disclosing about her HIV to our local school system.  I know we would not have to disclose, but still struggle with when to tell.

So, I bought two books to help me as I continue to help our daughter improve with “at home” therapy.  One book is It Takes Two to Talk, A Practical Guide for Parents of Children with Language Delays by Jan Pepper and Elaine Weitzman.  This book was recommended by my speak pathologist, and I have really like it.   But it was very expensive.  It sells on Amazon but I bought it a little cheaper off of Ebay. 

The other book I bought was The Out-of-Sync Child Has Fun, Activities for Kids with Sensory Processing Disorder by Carol Stock Kranowitz, M.A.  I check out this book first from the library along with The Out-of-Sync Child and Sensational Kids.    These other sensory books were very detailed about sensory issues and were just too technical for me.  However, I thought the Out-of-Sync Child Has Fun, was full of great activities and helpful basic summaries of various sensory problems.  My other children have enjoyed the activities too.

So while I was sad to say good-bye to our nice therapists, I am looking forward to continuing on our own.  I feel prepared and will reassess whether this is the best thing for her in 6 months.   All our therapists knew about our daughter’s HIV.  I chose to disclose to them.  It was a definite first for all three of them.  At our first meeting, I shared with them basic information about HIV (I joked and said in case you are stuck in the 80’s about HIV like I was before educating myself).  They all listened, had a few questions, but they were all so sweet and kind to our daughter.    I hope that all three therapist walk away from their time with our daughter being a little more educated about HIV.

More Testing

1 Nov

While we are making progress on her weight issues, we have some new issues to deal with.  Our daughter’s last two labs have shown her HIV levels are low/undetectable and her CD4 count is great.  However, the last two times other things they test have come back abnormally high or low.  Our PID doctor is now recommending more testing and is sending us onto a different specialist to see what is going on in her little body.  We are a little nervous about some our new unknowns, but we are continuing to look to God for our peace and strength for each day.

I cried when I found out about the need for more testing.  I personally hate that our daughter will have to endure more testing.  She has been through so much in 9 months.  I really hate there is more.   I think the biggest stresser about HIV is probably the stigma, but the number two thing for us has been watching our daughter undergo all these tests and lab work at her young age.  

When they drew blood last time, it took 45 minutes for them to get enough blood.  Our daughter fights and screams the whole time.  It usually takes 3 to 4 people to hold her down.   For some reason her veins are hard to get into and then they can’t get enough blood.  There is a RN at our PID office that is always in tears by the end of it all.  She is so little and so pitiful that it breaks everyone’s heart.   Last time they drew blood out of 3 places and the time before last it took 4 places.  I always end up crying just wishing they could do all the poking to me.  How I wish I could face the pain instead of her.  How I wish she could understand that this is all absolutely necessary and for her good.

Making Weight Progress- more meds

25 Oct

 My two new favorite words are Megace and Reglan.  These new medicines have made an AMAZING difference with our daughter.  She has been on Megace for almost a month and our doctor added Reglan a little over a week ago.  Megace works to increase a person’s appetite and Reglan helps with nausea, reflux, and delayed stomach emptying. 

Reglan is known for some pretty serious side effects.  After finding out that the risk of side effects were low due to a low dose and short duration, we decided to give Reglan a try.  She improved some with just Megace, but we saw a definite improvement with the Reglan added.  We will still need to go to our GI appointment in January to see what he thinks is going on.  But these two medicines have helped her to begin to eat.

Our daughter for nine months would barely eat or drink anything.  Everyone has been a little baffled by her.   She has some sensory issues and oral motor delays which may have contributed to her lack of appetite, but these medicines seemed to have turned everything around.  It is like a switch turned on in her head…like “Oh, I need to eat food.”  She is also drinking more than before.   It has been exciting and amazing at the difference in our little girl.

Since she is eating more, her bite is getting stronger, and her chewing is improving. She had only been eating things that would kind of dissolve in her mouth.   But last week she really began chewing food and even ate some meat.  This has been a huge relief to our family.   Just seeing her really eating is the most wonderful thing…still messy but sooooo wonderful. 

We hope that after she stops these medicines after 3-4 months that she will continue to eat.  It is our prayer that this will jump starts her eating and that no more medical interventions will be necessary.  We will want to rule out any GI problems that have contributed to her problems.  I suspect nausea from her HIV meds are at least partially to blame for her lack of desire to eat.  There is always the possibility that she will stop eating after she is off these medicines.  But for today we are just happy to see her eat.

I don’t know for sure that amount of weight she has put on yet, but we are seeing and feeling visible differences.  Her face looks fuller.  She has a little tummy now.  She feels heavier and more solid.  Our doctor would like her to put on about 5 pounds.  We will see if we get there, but things are definitely looking up for our food issues.  We would really like to help her overcome this obstacle in her life.  We will see if we have turned the corner for good.

My HIV Blessing

22 Oct

When we considered (or wrestled) with the thought of adopting a HIV child, I remember thinking that God was really asking us to “step out” in faith for Him.  I (pridefully) thought that we were doing something amazing for God…parenting a HIV orphan. 

Now many months later…I see things more clearly.  Adopting our daughter really wasn’t about “a big step of faith” for God.  We did not do any “great work” for Him. 

It was about a gift.  A gift He had for us.  (A gift I can’t imagine missing out on!) 

Thank you God for your gift, this precious child that you have given me the privilege to call my own.