Gotcha Day! February 1

This is my favorite picture from our Ukraine adoption trip. We weren't even going to take this picture because we were in such a big hurry after court to try to make it to the passport office before closing time on a Friday afternoon. We just kind of grabbed her, waved goodbye to her caretakers, signed a paper, hugged the director, and left! We also were kind of paranoid that the judge was going to change her mind about the 10 day wait as another judge had on a special needs adoption the year before. Anyway, as this picture was being taken, John was telling me to HURRY UP and get her in the taxi before they caught up to us. HA. But I refused to get in the taxi until he took my picture with Ava outside the ony home she ever knew. And so he did. And just so you know, we DID make it to the passport office just in the nick of time. :)


Anyway, I love this picture because it represents so many things to me. Just beyond that green gate was the only life Ava ever knew. This picture represents to me her former life of hopelessness and aloneness, her transition from unwanted to wanted, Ukrainian orphan to MY daughter, our new life together, a symbol of two almost-strangers committed to each other for life. This picture reminds me of so many emotions that I experienced that day. So much rushing around, the fear of saying the wrong thing in court, the anxiety of getting everything done in the right amount of time. And then....when it was all finished, and we were in the taxi on our way to get her passport to come home, John and I just looked at each other, a sleeping child on my lap, and we both started cracking up! I guess it all seemed too weird and overwhelming, everything had happened so fast and we were both just in disbelief that she was really OURS and that we were on our way home with her. I'm sure my Reece's Rainbow friends laughed when I emailed them saying, "OK, she is ours. Now what do I do with her?" I didn't have the first clue how to care for a child with Down Syndrome. I didn't know how to feed her or what to feed her, what appointments to schedule, how to teach her to sit up or roll over or how to communicate her needs. I had no clue what I was going to tell people when they asked how old my "baby" was. She and I have both learned so much this past year (and have so much more to learn). But it has been such a wonderful year and I wouldn't trade it for anything. I love you baby girl! I'm glad we're together for life!

Alopecia

I'd like to start this post by clarifying that No.....One of my kids did NOT shave Ava's eyebrows off but that would have made one really interesting blog post. :) They have all cut each other's hair at one point or another but thank the Lord they have never taken a razor to each other!

It wasn't until I was reminiscing about our adoption last year, and looking at photographs from our Ukraine trip and of our first visits with Ava, that I realized, she used to have such pretty eyebrows and eyelashes! I'm sure they've been falling out for some time and I haven't even noticed. (I'm not the most observant person.)

So some of you noticed, and some of you had to cheat by reading comments, but yes, apparently the alopecia is affecting her eyebrows and eyelashes too. I took her back to the dermatologist yesterday and didn't get great news.

Alopecia is very very difficult to treat. The younger it sets in the more difficult it is to treat. There are several treatment options but none are extremely effective. We experimented twice on some of the bald patches with steroid creams and injections (which were surprisingly not painful as I thought they would be, Ava didn't cry either time). Interestingly, over the past several months some areas grew in, some areas did not, and even more strange.....the one area that was NOT treated, the bald spot on the back of her head, grew in the best of all. ????? There is another treatment called squaric acid, I think, but the dr. said it can be cause a lot of irritation and sometimes blistering to the scalp, and neither of us felt like we wanted to subject her to that.

So, yes I am sad and yes I am disappointed that she has alopecia, and while part of me wants to give her every chance possible to have a head-full of hair, the other part of me doesn't want to put either one of us through that fight.

We had a family discussion last night and we all agree, Ava is perfect with or without hair, with or without eyelashes, and with or without eyebrows. We will pray they grow back, but we'll take her just like she is and love her the same.

So there you have it. The case of the missing eyebrows. Solved.

On a more positive note, however, she also had a follow-up with the opthamologist yesterday and her eyes are perfectly aligned and functioning very well!!! So yes, I guess her cross-eyed-ness is also missing, and that is truly something to be happy about!

What's missing?

Compare these two pictures, the first is from a year ago, the second was taken yesterday. :(

Thanks Delahne for knowing such neat people who are willing to give our little group tours of their awesome jobs! Last week we met "Miss Roz" who happens to be a well know sculptor in town. She showed us what she does, and then let the kids play around with some of her stuff. My favorite piece of hers is Simeon (from the Bible) holding baby Jesus above his head, as if in worship of Him. I just loved the expressions on both of their faces. (Maybe I kind of like the name Simeon too). By the way, I totally feel like Mr. Rogers as I tell you about the jobs and show you into the world of some of our really special neighbors.






Thanks Delahne and thanks Roz for a really meaningful and special experience. We will treasure these little keepsakes always. The kids' masterpieces are at the very bottom.

More random stuff

Sometimes I think kids would make better bloggers because they really stop and pay attention to little details which make a story.....as evidenced by this picture that I found on my camera that apparently was taken by one of my children. I would have just picked up the pieces of this demolished action figure and vacuumed the rest up but one of the kids thought to take a picture as they found it, and then again after trying to piece it together. This was a wrestler that I bought 2 years ago to make a Nacho Libre birthday cake. I bought twin wrestlers and painted them to look like Nacho and Ramses fighting in the arena. Goodbye Ramses! (Can you there is a big puppy in the house?)



John says I should never have sent this picture in to the Ukrainian Embassy for Ava's annual adoption follow-up paperwork (oh well, too late). I was trying to show them how we are helping her to learn to eventually walk, but John says it looks like we have her in some sort of torture device. :)This is a stander that the physical therapist is recommending we start using for Ava. The purpose of the stander is to position her properly while she learns to bear weight for longer periods of time without slouching or leaning. She hated this the first time....HATED it, but several months later they tried it again and it was a piece of cake for her. For some reason she reminds me of the kid on A Christmas Story, so bundled up to play in the snow that he can't get up.
---------------------------------------------------------------------
 I found this idea on the internet for Liesel's room. Silhouette shapes cut out of scrapbook paper on little canvases. Does it seem strange that some of these "canvases" are the exact size and shape of Rice A Roni boxes and Jell-O boxes? I'm not gonna say for sure, but I do think my great grandma Nellie Dunnivan, the queen of recycling, would be very proud.

--------------------------------------------------------------------
The kids and I had a discussion yesterday about college, and I informed my children that they should think about ways they can raise money for their own college tuition since their dad and I are probably not going to be paying for it. Jude asked, "Mom, do we HAVE to go to college?" I explained that no, nobody has to go to college, but I told him there are some benefits if he decided to go. To which he replied, "I think I'm just going to get a job at Bath and Body Works." I was a little surprised to hear this coming from my mechanically minded boy, so I asked why he'd want to work at Bath and Body Works. He said, "Because a lot of pretty girls go there." (Hmmmmm. Pretty clever boy I'd say!)
-------------------------------------------------------------------
Liesel told me the other day that she wants to adopt a bunch of kids when she grows up. She said she wants to adopt three with Down Syndrome, but first she wants to adopt some "plain" kids so they can help teach the younger ones with Down Syndrome. How cute that she considers herself "plain" compared to Ava's extra chromosome extraordinary-ness.

Five things that made me smile today.....

I loved this idea I read on a blog today (Thanks Valerie), so I thought I would do the same. She says at the end of the day she tries to think of 5 things that made her smile that day. I asked my kids to do the same tonight, and it is so funny to see how our "things" are so different. For example, "It snowed today", would not be on my list of things that make me smile, but it was on every one of my kids' smile list. For me, Snow Days=Lost mittens, boots that have been outgrown, cold hands that need warmed, runny noses that need wiped, water puddles that need dried up, and a big pile of laundry to do at the end of the day.

Despite the snow day, however, I do have 5 things that made me smile today. One for each of my 5 kids.

1. Watching Simeon feed Ava his oatmeal when he didn't know I was looking.
2. Reading Liesel's poem titled, "A Fart".
3. The sound of Jude trying to figure out how to play the guitar.
4. Hope's unmatching gloves....boy gloves, two different sizes, and me convincing her they were supposed to be that way because that was the new style when in reality I just couldn't find any others.
5. The sight of Ava on a snow sled with her stocking cap over her eyes and her tongue sticking out in excitement while her daddy pulled her, then the sight of her little feet sticking out of his jacket when she fell facedown in the snow and he took her inside to warm up by the fire.

Your honest thoughts please....

I would love to hear your thoughts on this. We have been trying to get one of our children seen by the public school system for a minor speech impediment. We have gone around and around, and ultimately the school is refusing to treat our child "because that is their policy". They don't treat homeschooled children. Period. Apparently this goes for children who attend private schools too. According to the law, however, public schools in our state are NEITHER PROHIBITED NOR REQUIRED to treat homeschooled children. So why would they not treat a child, if they are not prohibited to by law, and that child's family is paying their salary? Am I just too close to this situation to see clearly or does this seem unethical? When I asked what options homeschoolers have, I was told we would have to pay for private therapy. We are already paying $540 a month on private therapy for Ava, in addition to her school therapy, so it is hard for me to think of adding more to that when we are already paying taxes, that should, in my opinion, qualify us for school therapy. what am I missing here? Other schools in the area do treat homeschooled children, I am told. So WHY wouldn't they? The only answer we have gotten is that "it is their policy". I am trying to decide whether to keep pursuing this, or just drop it, which is why I would like to hear your thoughts.

This is what the law says:
Although LEAs are still responsible for child find activities to ensure that homeschooled children with disabilities are located, identified, and evaluated, and that a FAPE is available if their parents choose to enroll them in public schools. LEAs are neither required nor prohibited by federal or Oklahoma State law to treat homeschooled children as children enrolled in private schools (because the decision to homeschool a child is a decision to refuse the right to a FAPE, and thus, special education and related services at the expense of the LEA).

By the way, I have no idea what an LEA is.