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!

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