Down Syndrome sweetness...

I got a text from John the other day on my cell phone that said this:

"I just got a phone call from the doctor's office with shocking news..."


"Joseph has Down Syndrome."

haha. I guess the blood results came back. Oh well! What is one more right?

I haven't been the best at taking and posting videos, but while I was out one Saturday, John emailed me these videos of Joseph and Ava.  Notice Joseph almost always has in his hands a strip of torn paper that he enjoys flapping around. I'm not sure why he's so obsessed with tearing paper but let's just say we've had to hide all the important documents and have switched our homeschool curriculum to mostly computer!

Random stuff

Joseph has had a lot of drainage from his left ear. After seeing three doctors about it we have learned that he has a cholesteatoma, which is basically a benign cyst attached to his left ear drum. The cause is frequent untreated ear infections which he has most likely had his whole life. Children with Down Syndrome are more prone to ear infections because of their TINY eustachian tubes.Now the first thing I think of when I hear this is how many orphans are lying in their beds crying over untreated ear infections because they don't have a mother to get up in the night to comfort them when they're screaming and then schedule a doctor's appointment the next morning. My poor little guy how he must have suffered as an orphan!

Anyway, if untreated this cyst could eventually lead to hearing loss, nerve damage or meningitis, so he will be needing surgery to remove it soon. Most likely he will need ear tubes as well. Hopefully we can do this at the same time.
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The best thing about being the littlest one on the family is you get all the greatest hiding places! Do you spy a little Ukrainian girl in blue pajamas? Looks like Joseph did. And it looks like he is scheming how he is going to get there. (No worries, he didn't).

There are so many things I love about my husband. One is that he is so fun to play hide and seek with. It took him FOREVER to find Zoya up on the top shelf, even though she was giggling and giggling right above his head. :)

The letters to the tooth fairy continue. Now Hope has started addressing the letters to the Tooth Princess, and has started enclosing money instead of asking for it. How I love that girl! I suppose it's time for the Tooth Princess to write a letter explaining that she (he?) technically only visits when you lose a tooth, and that we should all start following the rules from now on.

Ava has a really bad habit of throwing her food, plates, bowls, utensils, usually to indicate she is finished eating. Sadly, Joseph has picked up this habit from her as well. We have tried everything we can think of to teach her, including buying a bowl with a suction cup at the bottom (which she just yanked right off). So I have started feeding her at the table so at least most of the oatmeal can be wiped up from the table rather than from the floor. I put her favorite baby doll up there with her since her teachers at school call her a little mama and a little teacher, I thought maybe she would enjoy the role of teaching her baby the proper way to set bowls and utensils on the high chair. It was too cute not to take a picture of! I should get a video next time now that I think of it. Ava would set her bowl on the baby's tray, then wag her little finger in front of her face and say, "NO, NO, NOOOOOOO!" haha. I guess now I know exactly what I look like when I am scolding nagging correcting my children.

If having a child with Down Syndrome in your family is a blessing, then having two is a Double Blessing. How we have loved watching these two get to know each other these last few weeks. I don't normally take the time to stop and take pictures and videos of these sweeties but I do wish you could see them! Joseph has really surprised me. I feared when we spent so many weeks with him in Ukraine, that he may be a little bit aggressive, but he has turned out to be the SWEETEST boy EVER and in fact is very forgiving of Ava who does have a tendency to hit and pinch at times. She pinches him and then he signs 'no' and leans over and gives her a kiss. Oh I love these kids. All 7 of them. What a blessed mama I am!

The puppy finally has a name!

I took this picture about a week after our friend Luke had died tragically in a diving accident.  Our kids really loved and looked up to Luke and had taken his loss so hard, so we made the decision to take our older three children with us to the Memorial Service. That night Jude fell asleep holding a picture of Luke, from the service, on his chest. It was a touching sight to say the least.

Fast-forward a couple of weeks. You know the story of Oliver the mangy rescue dog who had to be put to sleep, and then the story of how our vet personally sought out for us a nice puppy replacement......a 6 month old Yellow LabraDoodle.

Well that poor puppy has not had a name for his first two weeks here with us. With so many people in our family we just have not been able to agree on just one name. Einstein, Barkley, Charlie, Benjamin, Prince Charming, Duke, Captain Doodle...None of them sounded quite right at least not to the majority. Then one of the kids suggested Luke and everybody unanimously agreed that it was the perfect name for the puppy. While I loved the idea, I wasn't entirely sure how socially appropriate it was to name a dog after a loved one who passed away but after all it was the kids' idea and the last thing I wanted to do was scold them over it. Besides, I knew Luke would have loved it!  I also felt that this was the kids' way of coping and attempting to keep Luke's memory alive in our hearts and conversations.

 At the risk of offending I decided to run it by Luke's family to hear their thoughts. I'm so glad they agreed!

Welcome to the family, Luke!

Fall Family Photos

We missed church this morning, so we decided to go take family photos instead on this beautiful fall day!

It was fun! I think I decided we need to do it more often (Not skip church, but take more family photos).

Letters to the Tooth Fairy

Hope has been writing letters to the tooth fairy and putting them under her pillow at night. In each letter she asks for money. Yesterday she finally told me that she is collecting the money for ME. "Because you never have any money in your wallet, Mom", she said.

What an ingenious idea! I suppose now I will finally have coins in my wallet, for gum ball machines and such. I am so humbled.

LUV TOOTH FERYY WEL YOU GIV MY SUM MUNY

FOUR MY MOM

HIV questions continued...

I have a question...and I don't think this has been answered yet. In the United States, I'm guessing, kids born with HIV are treated ASAP, and as you said, can go on and live a normal life with pretty much normal life expectancy (afterall it may never turn into AIDS). My question is though, in Eastern Europe, Russia or even Africa. Are these kids medically treated as soon as possible? Are they even treated? If so, how WELL are they being medically treated? If they do start treatment later on in life, do they have a greated risk of their HIV turning into AIDS? Have you found many differences in the medical treatement your child is receiving here vs. in his/her home country? These are questions I've always wondered!

Sarah


- I don't have any solid answers on this. But I'm pretty sure this goes for any orphanage overseas: Yes, the children ARE treated. However the resources we have here are just not available in most other countries. Our doctor said in his 20+ years of treating HIV patients he had never seen such good blood results in a child adopted from overseas. He was quite shocked actually. (The virus was low to the point of being undetectable). He said this indicated excellent care on the part of the orphanage, which makes us so grateful. The doctor made a couple of minor changes to the medications and the dosages but otherwise he was really happy with what the orphanage had already been doing. I do believe kids are generally treated shortly after being diagnosed. Our child had been receiving treatment since, I believe 2 weeks of age.


How do you deal with disclosure? Isn't it best to keep your child's HIV status confidential?


This is by far THE hardest part about HIV adoption! Who do you trust with this information, if anybody? 
-On the one hand it's nobody's business, and on the other hand you KNOW people would rather know so they can be cautious. 
-On one hand, it is your child's personal story you should protect. On the other hand there are many other HIV+ children needing families, and you MUST advocate for them. 
-On one hand, friends might ostracize your family if they knew. On the other hand, who needs those kinds of friends anyway?
-On one hand, you can never 'untell' your secret once it is out there. On the other hand isn't the secretiveness and shame what perpetuates the stigma in the first place?


We have found that other HIV adoptive families either remain totally 100% secretive about the HIV, not even telling family or close friends, or they choose to openly educate people about HIV and HIV adoption. We have also found that there can't really be a middle of the road here. It is very difficult to just tell a few close family members and friends, and then trust that people won't be telling other people or sending anonymous letters to church or school, or questioning you at family reunions whether you have told so-and-so or not. We tried the middle of the road approach and feel much more peace with being more open about it.  It is a very personal decision whether to be open about HIV or not. I don't think there is really a wrong way to handle it, as long as the child is treated with dignity and respect. After all HIV in children is really NOTHING to be ashamed of.


You should also know that according to the health department we are not required by law to tell ANYBODY, even doctors and dentists (although it is encouraged for obvious reasons). Technically all hospitals, clinics, schools, day cares, etc. should be using universal precautions anyway, thus the reason why it is not mandatory to disclose. The only time you must disclose by law is when you are putting another person at risk knowingly. A little surprising, huh? We have chosen to disclose to church and school, mostly because we didn't want them finding out through someone else and then freaking out on us. 


So far friends and family members have exceeded our expectations and have been surprisingly and graciously, KIND, loving and accepting of our family, all of us! Thank you Jesus for a big prayer answered as we took a giant step of faith. Thank you friends and family!


As I'm sure you've noticed I am not ready to go all out and name the HIV+ positive family member. I believe we will get there in time but I still feel somewhat protective in this way. If someone has a problem with "our" HIV then they will have a problem with the whole family and not one innocent member of it.


General HIV maintenance and daily precautions:


This is really the simpler part of HIV adoption, as compared to the previous question.


1. Although it is so tempting to do so (kidding!) there is absolutely no sharing of razors and toothbrushes allowed. I keep all razors and toothbrushes up high out of the reach of little fingers, just to be on the safe side. I do not know if HIV has actually been spread this way, but we don't want to be the first, and this is what the doctor ordered.


2. No touching of blood. Again, do we really need this rule? When there is blood (and there has been a couple of times), only Mom can clean it up. Of course this doesn't scare me at all, just get it cleaned up and disposed of ASAP just like I would any of my children. It's a good idea to wear gloves (although some argue this isn't even necessary) and  keep a first aide kit in the car and in several places around the house.


3. Regular doctor's appointments for IV blood draws to check HIV levels and medication levels. We do this every three months. Soon it will only be every six months.


4. Three medications are given twice a day. They are Kaletra, Epivir, and Zidovir. These are taken with food and must be on time, within an hour of scheduled dose. I have my phone alarm set to go off every day at 8am and 8pm. I was worried I would be forgetful about this, but I have really surprised myself and have done an excellent job, if I do say so myself!


5. Technically an HIV infected individual is more at risk for infections due to a lower immunity. Therefore you should be more on the cautious side when it comes to vaccinations, fevers, etc. Your doctor will help you know if and when to vaccinate, if and when to bring your child in vs. letting a fever run its course. So far this has not been an issue for us, since we are ALL healthy!


Later on we will have to worry about dating and marriage, but that doesn't scare me either. We will teach and encourage abstinence until marriage for ALL of our children. John and I were able to pull this off successfully and we are thankful to be able to be an example to our kids in this way. It is a gift to our marriage and neither of us ever EVER regretted waiting!


So now that you are well informed about the beauty and joy of HIV adoption, please go look at the wonderful children who are waiting for families! My prayer is that someone's heart has been opened to the great need and that at least one child will find a home through these blog posts. PLEASE just take a look.......and pray, donate, or better yet ADOPT. They need families, every one of them. Maybe, just maybe, one of them will be yours!!

More questions and comments about HIV

Does your child know he/she has HIV?


I don't think so but we will be open as soon as it is developmentally appropriate.

What do you mean it can never be transferred from "child to child or child to adult"? Does that mean that only adults can spread it or am I reading that wrong?


I suppose it COULD be spread from child to child but someone would really have to try hard to do it. What I meant is that it is not spread by engaging in regular childhood activities, such as playground injuries, sports, swimming, etc., but rather it is spread through intimate and risky 'adult' contact (sex and IV sharing), OR from mother to child (although nowadays even this is preventable through medications. Our child's biological mother did not receive any prenatal care, thus spread it unnecessarily to her child. Isn't it a shame, something totally preventable passed on to a child who will have to live with it for a lifetime.)

My children's favorite babysitter is HIV positive. The fear we were taught in high school health classes is not the reality. I am so glad that my children will grow up knowing the truth and not the lies we were taught.

Awesome Jill! I would love to hear more about your babysitter and how she deals with the stigma, and relationships. I don't actually know any other people with HIV in real life!

I do have a question....Does your insurance cover the meds or are there places that give you meds for free?

There are many many kinds of medications available today. Our insurance covers all but $25/ month for each of the three daily medications we administer. We signed up for a promotional with the drug company where we take a monthly survey (short-only 5 minutes long or so). In exchange they give us a coupon for up to $100 a month towards whatever our insurance doesn't cover. In other words, we pay absolutely NOTHING for medications!! I'm sure this will vary by state or by insurance company, but we have been very pleasantly surprised with the financial aspect of managing HIV.

Would you be open to doing a post devoted to HIV... what meds, extra precautions, extra doctors visits, etc?
My heart is there, my husband's is coming along...

I too would be very interested to learn about the ins and outs of caring for an HIV+ child -- the "maintenance," the medications/appts., the cost, special precautions/measures, etc.

I will answer this on a separate post, after I have some time to organize my thoughts. Let me just say first that whatever extra precautions and appointments come along with your child will be totally worth it! More soon.

And here was my favorite comment, from Lisa:

Love that you've started sharing about HIV! My Olivia has her own blog and is HIV+ if anyone would like to see what a "real live child with HIV" is like! :)
http://heroesinspiringvision.blogspot.com

How wonderful to see that this beautiful young lady is comfortable with being open about her HIV and her adoption. I love her! Thank you Lisa for sharing your daughter with us! I believe we will eventually 'get there' as well.