Tag Archives: children living with HIV

FYI

7 Jun

Sorry for the lack of blogging lately.  Life is busy, and we have been battling ringworm in our house for about two months.  It has been “lovely”  just barrels of fun  Our son apparently is fungal prone (doctor’s wording) and got ringworm of the scalp yet again.   (He also had it last spring.)  Yesterday after another trip to his doctor, we picked up his second round of medication. 

What was different this time around was that he “shared” it with others.  My husband, myself, our daughter, and poor ol’ nana all got numerous spots on our neck or arms.  I went to the dermatologist not knowing what mine was at first, and the doctor said that ring worm of the scalp can spread to others on the skin.  It’s the same fungus.

So why am I writing about this here…well everyone in our house got ringworm except… Noel.  I found that amazing.  You would think she would have gotten it too, but she still has not gotten any spots.   It just goes to show that HIV medication does wonders.

Life with a Pump

28 Mar

We are now using a feeding pump with Noel.  It has helped some (we are getting a little more formula into her without her throwing up), but it has not solved all our GI problems.  We have an appointment with our GI doctor next week to see what else he thinks is going on.  We believe there is a stomach emptying problem.  It might mean another medication.

Also a  few weeks ago Noel was switched to a different feeding formula.  It is called Peptamen, Junior 1.5.  It has 375 calories and part of it is already broken down for her.  She is getting about 16 oz of Peptamen a day.  She gained almost a pound last month. 

For now she is wearing the pump in a feeding pump backpack  for about an hour 3 times a day, but we are supposed to switch to night feedings when we can.  We are concerned about feeding her at night because she is a pretty active sleeper.  We think she will just get all tangled up in the tube.  We also don’t see how she will fall asleep attached to the pump because the only way she sleeps is on her stomach.  The pump beeps when something has blocked the flow.  She is getting more used to the alarm, but it kind of freaks her out a little bit.  We are worried that the alarm will go off at night and scare her and us half to death.  Lance and I really like to sleep, and I think there will be a huge learning curve to the feeding pump at night with Noel.  We are going to have to work towards it though so that we could feed her at night and then during the day she might start eating again. 

Her HIV is easy to manage, but these feeding issues are challenging!

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.

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.

Adoption Nutrition

6 Oct
This is a great website dedicated to helping parents with nutrition/food issues.

 

Weight Issues Continue…

29 Sep

We are still in a quandary about what to do for our daughter who really won’t eat.  She is the happiest little girl in the whole world, but she will not eat enough to put any weight on her already little body.  She actually lost about 5 oz last month.  At almost 3 years of age she is 33 inches tall and only 21 and a half pounds.  She is so little, but she is so full of personality.  She is such a doll. 

In her 8 months home, she has made incredible gains in all areas but eating. 

Last week we met with an occupational therapist to see if her eating woes could be a sensory issue.  At the end of our meeting, the OT said that our daughter was hard to figure out.   However, she feels our daughter is a sensory seeker as far as her motor skills.   But she did not think sensory issues are the sole reason for her eating problems.  She said that our daughter did not follow the typical pattern for children with food sensory issues, and she said she certainly did not think she looked like the typical failure to thrive child.

I really don’t know what has led to all of her eating problems.  But I think her eating problems are part developmental delays (she chews only up and down and has a weak bite), part personality (she is so busy), part stomach issues (maybe her HIV meds are making her nauseous) and maybe part sensory issues.  Who really knows?

We are just unsure what our next steps should be to help our daughter.  We are open to a g-tube but no one thinks our daughter will keep it in with her active and somewhat quirky personality.  In a few weeks we will see our PID doctor again and run some more blood tests.  As of today our PID prescribed Megace, an appetite stimulating medication to try.  She and our local doctor want us to get into a pediatric GI doctor ASAP but their first appointment is in January.  I am trying to press for a sooner appointment.  I will keep you posted on her progress.

Benecalorie: Weight Gain Help

17 Jul

In my last post, I shared about our daughter’s struggle to eat food.  As you can imagine, we have had great difficulties putting weight on her.  We met with a nutritionist at the ARMS Clinic, and she shared a couple of different tricks to help increase a child’s calorie intake.  The one that has been most helpful to us is called Benecalorie.  It is a medical food that you can mix into your child’s drink or soft foods.  We mix it into our daughter’s Pedisure.  

Benecalorie is made by Nestle Nutrition.  Here is a description from their website,  “There are two reasons why BENECALORIE® is the ultimate solution for fighting fatigue; a formula that packs 7 grams of high-quality protein and 330 calories into a single 1.5-oz serving, and its ability to blend easily into liquids and most foods. Maximum nutrition, maximum flexibility, maximum variety, with a minimum serving size.”

We are big fans of Benecalorie.  It  has helped our daughter gain some weight.  She weighed 18 pounds in January and now weighs close to 22 pounds.  Part of our problem has been, as our daughter’s motor skills have improved, she has become more active thus burning more calories.  So some months she has not gained weight but has not lost any either.  There are just a few downsides to Benecalorie: it is kinda expensive and (I think) only sold online.

Our daughter has been using Benecalorie once a day for about 4 months.  We don’t plan on using Benecalorie forever, but it has been helpful while we work through her oral aversion problems.  I frankly don’t know what we would have done without it!

Red Letters

28 Jun

Tom Davis, CEO of Children’s Hope Chest, has written a little book applying Jesus’ teachings (the “red letters”) to the HIV/AIDS pandemic in Africa and other needs around the world.  I found it helpful in stirring my heart to care like Jesus does for the “least of these.”  Even though I’ve adopted two children from Africa, I can still be guilty of ignoring the overwhelming need I left behind there.   

Reading Davis’ statistics and stories moved me as I thought about my own daughter.  There are countless others like her orphaned due to a disease they had no control over.  “The worst thing about HIV/AIDS is how it destroys the lives of its innocent victims.  I’m talking about babies who are born HIV positive…These victims are dying by the hundreds and thousands.” (pg. 58)

“Early in 2003,” writes Davis, “over a third of the adult population [of Zimbabwe for example] was infected with HIV.  It is estimated that at least one in three of today’s fifteen-year-olds in Zimbabwe will die from AIDS…Over a million children in Zimbabwe have lost one or both of their parents to AIDS.” (pg. 71)

Davis argues that the church has not done enough to help.  He pleads for Christians to practice Jesus’ words, including: “You shall love your neighbor as yourself.”  He offers many suggestions for how an ordinary person like you and me can make a big difference, and adoption is only one.  Children’s Hope Chest has several programs for getting involved, like 5 for 50.  He lists many other organizations as well.  My mind is whirring with the thoughts and ideas presented in the book.

If you are not familiar with the HIV/AIDS crisis in the world and need your heart stirred, then I recommend the Red Letters.  Some books of this nature can be very negative and accusatory about the church but I didn’t get that from Red Letters.  I thought it appropriately challenged Christians to take Christ’s commands seriously. 

One clarifying remark I would like to add concerns what the Gospel is and isn’t.  I totally agree the Gospel is meant to be lived out in our daily lives.  The Gospel doesn’t just inform us, it affects us, it changes us.  But I disagree, in so far as Davis meant this, that the acts of compassion we do are what the Gospel is all about.  (see pg. 14)

The Gospel is all about the compassion of God in sending His Son, Jesus Christ, to live and die in the place of undeserving sinners like you and me and how we can be reconciled to God through faith in Him.  The Gospel is a message about what God has done for us – not what we do for others.  The Gospel motivates and compels us to extend compassion to other people.  We love, the Bible says, because He first loved us (I John 4: 19).  But our compassion is not itself the Gospel.  It’s an example of the Gospel, lived-out imperfectly in Christians’ lives, but the Gospel stands alone as what God has done for us. 

Finding A Clinic-Deciding to Drive

26 May

After we accepted our daughter’s referral back in September 2009, we started working on the paperwork to bring her home.  At that time the U.S. Embassy required the I-601 waiver.  That waiver is no longer required as of January 4, 2010.  We had to collect several supporting documents like proof of insurance, a letter from a pediatric infectious disease doctor, a letter from the local health department, and so on.

That’s when we began to understand a little more about our community’s feelings toward HIV adoptions.  These things have influenced our decision to keep our daughter’s HIV private – for now.

I contacted the closest Pediatric Infectious Disease (PID) doctor’s office.  It is about an hour away.  I asked about meeting with one of the doctors concerning our I-601 waiver.  I was shocked when the secretary said, “The doctors will not help with any adoption paperwork.”  I went on to explain further, thinking she didn’t understand.  The secretary replied sharply,  “No, I know what you are asking.  People have called about this before…The doctors will NOT help with any paperwork to get THESE children into the country.  If you get them into the country, they will treat them, but they won’t help you get them into the country.”  End of discussion.

When I got off the phone, I had a good cry.  This was the first time I really saw how some people view HIV adoption.  They weren’t willing to sign a piece of paper which was necessary to bring our daughter home.  I emailed another family in my state about this doctor’s office and she said they and one other family had the same experience.  She said their family drives to a clinic specializing in HIV children three hours away from their town.  I couldn’t imagine doing that, but she went on to explain the kind of service they received and how they felt like their HIV child was treated with love and respect.  She said it was worth the drive for them.

This is when I learned that PDI doctors see patients for a lot of other things…like staff infections, chronic ear infections, hard-to-cure infections, and they also would treat HIV.  However, in the U.S.  there are rarely pediatric HIV patients unless they have been adopted.  So the office I had called may or may not have ever treated a HIV child.

 I also learned some clinics specialize in treating children with HIV and I found one in Dallas, Texas.  So we drive 4 hours to go to this clinic, but also spend time with family who live in Dallas.  You only have to see your specialist about 4-5 times a year so we felt like this was workable for our family. 

My experience with the closest doctor’s office showed me that not everyone will get warm and fuzzy feelings about Americans adopting HIV orphans.  I went on to have difficulty getting the required paperwork from my local health department as well.  They said they had never heard of such a thing (HIV adoption). They would not help with our paperwork.  I had to make many calls to finally get someone at the state level who was willing to help. While working on the I-601 paperwork,  I felt like people acted like it was the craziest thing that they had ever  heard of.    I had to remind myself that it is ok if some people don’t approve of our adoption.

The Dallas clinic we found is just for HIV children and they said that 80% of their families are adoptive families.  They have been absolutely amazing to work with.  The first time I called the clinic to see if they would help us with the I-601 papers that were like sure, no problem.  Their nurse practitioner called me back and talked with me for 2 hours answering any questions I had about HIV.  They also invited us to tour their clinic and meet the staff which we did before we brought our daughter home.  In my next post I will write more about our Dallas clinic and our HIV doctor.