Final Post…for now

This will be my final post for now on Precious and Positive for two reasons.  The first reason that I simply don’t have the time with caring for our young children, homeschooling, and church activities.  The second reason I think I will stop blogging for now is that I think I am done with sharing details about Noel’s health on a public blog.

Noel is currently doing fine despite all her life challenges.   It is our daily prayer that she continues to make progress even though it is very slow at times.   We love her and can’t imagine our life without her.    The day-to-day struggles do not surround managing her HIV, but have to do more with her continued feeding issues and life with a feeding pump.  However, we are finding out more and more that her feeding issues, global developmental delays, and seizures can all ultimately be blamed on her HIV.

I am currently really struggling with hating her HIV.  I hate it for her because it has made her life so much harder.  It is sad what is normal for this child regarding doctor’s visits, lab work, and diagnostic tests.  I hate that she has to endure so much.  I also hate the stigma that is associated with HIV.  That we feel like we cannot share our struggles with others to hopefully gain support because we believe their responses would not be positive.

HIV adoption can be a simple thing.  You are adopting a child that just needs medicine and visits a PID doctor 3 to 4 times a year.  That was not our story.   It was not that simple for Noel.   We DO NOT regret our adoption for one second.  We love our daughter and can’t imagine not having her and helping her through this life.  But there are risks associated with HIV adoptions.  HIV is real and can affect a little one for life.  But there are always risks for a medically needy child whether you adopt or give birth to a child.  For Lance and I God choose to bless us with a medically fragile and needy child.  If I had known all we would have faced with Noel before our adoption, I would have told you we could not handle all of it.   But God knows us better than we know ourselves and He is daily changing me to be a better mom to Noel and my other two children as He makes me more like Christ.

These are some of the truths that keep me sane on my journey in this life.

My God is sovereign over all things.

He is sovereign over Noel’s HIV and her brain.

My God knows our path…whether we have darker days or brighter days ahead and He can be trusted.

My God loves and cares for Noel more than I could ever.

One day in heaven Noel will get a new body and she will be free of HIV.

My God will supply all our needs.

His mercies will be new every morning.

My God is faithful.

What if our Blessings come through raindrops?

Great Post by AWAA Mom

Please read this post .

FYI

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.

TOMS

Lance surprised me this Mother’s Day with a pair of TOMS shoes.  I have wanted some TOMS for a long time.  I love the concept behind this company.   My shoes are cute but a little big so I have to mail them back for a smaller size.  

Buy yourself a pair and provide a pair of shoes for a child at TOMS shoes.com

ProjectHOPEFUL Video

Here is a cute ProjectHOPEFUL video about voting on June 11th for Cars for Good. I will voting for sure, and praying they receive one of the cars.

Time to Eliminate Pediatric AIDS is Now

The Time to Eliminate Pediatric AIDS is Now from EGPAF on Vimeo.

MSNBC Article

More U.S. families adopting HIV-positive kids

Life with a Pump

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

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.