Showing posts with label HIV/AIDS. Show all posts
Showing posts with label HIV/AIDS. Show all posts

Thursday, July 26, 2012

Lucy + shopvac =

a trip to the emergency room!
Photo credit goes to Anaya
While I was vacuuming out our vehicle the night before we left for vacation, Luisa decided to check out the shop vac and apparently stuck her hand in the other hose opening.  I heard her screaming so I shut it off and found her standing there with blood running down her hand!  Poor baby!  I took her in to the E.R. because it looked so bad, but she checked out fine and they sent us off with bandaids and antibiotic ointment!

Ryan had just left to do some rustic camping with the boys before we were to meet up in Traverse City the next morning so I had to take Anaya with, but they both did great.  Aside from the difficulty of keeping it clean while camping and hearing her sweet little voice say "hurts bad mom!"  It healed up quickly and her first trip to the E.R. went very well!

It may sound strange since I keep this blog public and most people we know are aware of Luisa's HIV, but I hate to have to tell people that she has HIV.  I guess I just don't know how they will treat her and that makes me uneasy.  I couldn't have been more pleased by the way the Dr. and especially the nurse treated her that day!  In fact the nurse told me about her family member who is adopted and has Hep. B and was so sweet and encouraging.  I have heard stories from other adoptive parents where that is not the case, as appalling as that is, the truth is, sometimes the stigma still remains.  So thankful that was not our experience.  Lucy is such a happy healthy kid, other than having to give her medication 2 times a day, her HIV/AIDs diagnosis is the "big deal" that truly isn't!

Monday, April 9, 2012

UNDETECTABLE!!!

Today we are celebrating this wonderful news, though it took a whole year, we are so thankful to God for his blessing and healing in Luisa's life.  When we received her referral, we were told that she would not live to see her 5th birthday if she did not get the treatment that she needed.  Her viral load {amount of HIV in her blood} was at nearly one million, and her immune system was severely damaged.  Today, it is undetectable!!! {the test can detect down to 40, so her number is somewhere under 40.} This doesn't mean that she no longer has AIDS, unfortunately, that diagnosis will stay with her forever, it just means that the medication is doing it's job, her immune system is healed and most importantly, Luisa is ALIVE and active and LOVED oh so much!!!!

Psalm 139:14

 (NIV)
14 I praise you because I am fearfully and wonderfully made;
   your works are wonderful,
   I know that full well.

Thursday, December 1, 2011

World Aids day...

Today is World Aids Day, and we are praising God for the advances in meds that are keeping Luisa alive and healthy!   I just heard today that a recent survey showed that one in four people still think you can "catch" HIV from sharing a cup.  UGH!  Please, take a few minutes, if you haven't already, to watch the Truth Pandemic {click on the icon on the top left of my blog.} And share it with your friends.  Thank You!


Sunday, June 26, 2011

a couple of updates...

After we returned from Disney, my sister in law Lisa had an appointment at Mayo, she was not expecting good news as she had a lump in her side and was overjoyed to learn that it is some sort of radiation related scar tissue!  AND the tumors have shrunk some since her last appointment!  WOWSERS!  We were all thrilled with this news.  Please continue to pray for her as she continues to fight on!

Along that same line, our friend Ryan who is also fighting cancer received good news at his appointment as well!


We also had a great report on Luisa, her immune system is almost back up where it should be, and her levels of HIV are coming down!  Still waiting for those numbers to be 'normal' and 'undetectable,' but we are seeing progress and she is doing great!  We don't have to go back to the lung specialist for about 8 months as her breathing is normal, she is not on any breathing treatments, she is still on medication for reflux, but we think she will be able to go off of that soon as well!

Praising God for these good reports!

Saturday, April 16, 2011

First Dr. visit...

  Precious baby girl in her big gown
We had Luisa's first PID (pediatric infectious disease) doctors appointment last week Friday.  We started out at DeVos Childrens hospital for chest x-rays and then we went over to the Dr.'s office.  The chest x-rays showed some 'abnormalities' so the doctor was going to call the pulmomologist to get his opinion.  She sent us down for lunch and told us to check back after we had Luisa's blood drawn to see if he was able to look at the x-ray or not. 

While we were at lunch, God arranged a little impromptu get together for us!  The pulmonlogist and our doctor met in passing while in the hall right in front of the cafe, the cafe that we were eating in!  So there we all were!  We were able to talk for a bit and he told us to come up to his office as soon as we were finished.  YAY God!  We got an appointment with the pulmonologist the same day!  Luisa is scheduled for a bronchoscopy on Tuesday afternoon at DeVos.  We would appreciate your prayers!

The good news is that her viral load (amount of hiv in a ml of blood) is now 1,347 copies, down from approximately 90,000 copies in January!!  This is a lot of medical jargon to say that...we are heading in the right direction!  Eventually we want to see this number be below 50, at which, she will be considered 'undetectable'.  This is because she is receiving her medications on a regular basis under our care!  Thank you Lord for ARV's (antiretroviral drugs) and their life saving capabilities! 

I know there are millions of people all over the world who do not have access to these drugs, and are dying.  It breaks my heart.

Monday, April 11, 2011

So I'm little niave...

Even though we have a public blog, and we have told 'everyone' we know about Luisa's HIV,  I do enjoy the fact that the vast majority of the people that I pass on a daily basis know nothing about Luisa's health.  Imagine my surprise when last week, we were featured on several online news sites including MSNBC, and FOX.    I had no idea that was going to happen!  Let me explain...

We were asked to do an interview by Bethany Christian Services about families adopting HIV + children.  We agreed, and soon we were contacted by David Crary of the AP.  Well, I am now embarrassed to admit that I had no idea what the AP exactly was, yes, the Associated Press, but I figured it was A newspaper in New York or something, no big deal.  We both did separate phone interviews with David, and  he told me it would run the first weekend of April.  Okay...

Well, I was curious as to how I was going to get myself a copy of the AP so we could see it, but was too embarrassed to ask him{THANK THE GOOD LORD} so, I asked my brother in law...

He told me that the AP was not, in fact A paper, but rather sold their stories to MANY papers or news organizations!  Oh dear.  Well, I googled our name and the name of the reporter and came up with nothing, so I forgot about it.  Until about 2 days later when I started getting emails about us being on MSNBC...What?

Sure enough, then on Fox news and other sites as well, I thought, "maybe no one else will notice"  But....Soon, it was all over facebook!  It wouldn't have been so bad, but, I really hate that people can comment on those articles and I knew from my experienced friend Carolyn, that there would be plenty of haters out there!  So I decided not to read them.  Ryan on the other hand, wanted to read them all...I asked for only a briefing on the percentage of negative vs. positive.  It was weird, but then...

When I was shopping at Meijer the next day, the check out lady recognized me, and told me that we were on the front page of the local paper!  *Nice*{Not!} Then, the next day, it was in yet another local paper. 

Everyone has been asking how this all came about...well, now you know "The rest of the story!"
{I am just super naive, and had no clue!  But, it was a decent, well balanced article and I guess it did get the message out there...it was just a little weird, and way out of my comfort zone!}

2 Corinthians 5:19b-20a ~ The Message
God has given us the task of telling everyone what he is doing. We're Christ's representatives.

Wednesday, February 23, 2011

prayers answered!

We have the meds!  We went there today and they had them ready for us.  Still not sure exactly what the hold up was, but, our translator declared "your prayers worked!"  Amen and Amen!  Thank you Jesus!  

We also finalized some paperwork so that Jayden and Spencer can stay here with me until the end of the process.  So now I will not cry as hard when they all leave on Saturday morning!

Please pray...

We are not exactly sure why, {though we have an idea} but every time our interpreter (Patricia) goes in to get the medicines we need, she is turned away for one reason or another.  She is going back this afternoon to try it again.  Please pray that she is able to get it, as we will run out by tomorrow, and it is IMPERATIVE, that Luisa takes all of it every 12 hours.  We know that God knows and is in control over this situation, we just ask that HE receives the glory, as even Patricia said we should pray.  Thank you!

Tuesday, January 25, 2011

Sanctity of Life...

Sunday was Sanctity of Life Sunday.  We were blessed with the opportunity to share Luisa's story with our church family.  Ryan spoke on the value of life, especially one little life that has changed our whole world.
He used the story of lepers in Jesus day, and how Jesus responded to them. (Luke 5:12-13)  He had compassion on them, he touched them, and he healed them.  The same actions are required of us today, we are to have compassion on people that society casts off, we are to reach out to them and touch them, and we are to heal them, or pray that God would heal them or offer them the life saving medications that they so desperately need.  We are not to be like the shepherds God talked about in Ezekiel 34. 

...‘This is what the Sovereign LORD says: Woe to you shepherds of Israel who only take care of yourselves! Should not shepherds take care of the flock? 3 You eat the curds, clothe yourselves with the wool and slaughter the choice animals, but you do not take care of the flock. 4 You have not strengthened the weak or healed the sick or bound up the injured....


He talked about the faith steps we took as we set off to do what we felt God was calling us to, even when it did not make sense to do it.  About how we are to say "YES LORD" even though we have no idea how things will turn out.  Too many times Christians take 'safe steps' rather than 'faith steps.'  If everything we do can be accounted for from a human perspective then what difference is there between us and the rest of the world?  He also shared Psalm 40:1-5
 3 He has given me a new song to sing,
      a hymn of praise to our God.
   Many will see what he has done and be amazed.
      They will put their trust in the Lord.
 4 Oh, the joys of those who trust the Lord,
      who have no confidence in the proud
      or in those who worship idols.
 5 O Lord my God, you have performed many wonders for us.
      Your plans for us are too numerous to list.
      You have no equal.
   If I tried to recite all your wonderful deeds,
      I would never come to the end of them.

Then it was my turn to share a bit of Luisa's story (I condensed the story I have posted on the blog under the header if you have not read it before and are interested.) Then we shared the vehicle story and how God has been funding this adoption.
We also shared the Truth Pandemic video with the congregation and God blessed us with an amazing doctor from Grand Rapids, (who is a friend of a friend) that came up to share as well.  He did an incredible job explaining HIV/AIDS and how it is, but more importantly how it is NOT transmitted.  The reason we say it was such a God thing is that, we had asked our dear friend who is a nurse, to share the medical side of HIV, as we felt people would be more inclined to believe a 'professional' than what we, the adoptive parents would say.  She said she would be willing to share...BUT GOD...laid it on her heart to have her dear friend the doctor share, and (at the last minute I might add) he was not only willing, but also able to come up and share. And what a complete blessing he was.  Only God could have orchestrated that the way he did! 
We are so thankful for our church family, their love and support has been amazing!
*And no, we still have not heard anything from our agency...so we still have not booked our flights!  But, I checked today and Spirit Air has a sale going on the flight we will probably take so this delay could be a good thing?(IF we hear something SOON!)  We shall see... I will post as soon as we hear anything!  Thanks for checking in!

Tuesday, November 30, 2010

The Truth Pandemic...

December 1st is World Aids Day
Project HOPEFUL invites you to join with them in spreading the truth
about HIV/AIDS and children living with the disease. Please watch their video, Truth Pandemic and then share it
with five of your friends so they can learn the facts too.  Help fight social stigma Join the Truth Pandemic!



One of the fabulous families that we met at The Orphan Summit was the Twietmeyer family. They are a family that have adopted six children from Ethiopia, two of them are HIV positive. The story of their daughter, Selah, is truly remarkable. By the time Selah's adoption was complete, she was 12 years old, weighed 32 pounds and was dying from stage 4 Aids. Now she is a healthy, happy 13 year old. While HIV is a death sentence in third world countries, the miracle of HIV medicine in America has virtually eliminated anyone from dying from Aids related issues, but we generally remain a nation uneducated on HIV or Aids. The Twietmeyers have formed Project Hopeful to assist families that adopt HIV positive children and help educate the country against the stigma of HIV.

It was a privilidge to spend some time getting to know the Twietmeyers, Carolyn is one awesome momma, and such a blessing to me!

Check out their family in this months issue of People Magazine!