Thursday, July 30, 2009

Nightlights

Ever since the girls came home, they have been sleeping without nightlights. This was mainly because we only had one nightlight and its residence was our bathroom. In our little house, the layout was such that with the nightlight in the bathroom we could open the boys' bedroom door and have enough light in there to see (well enough) at night if necessary. But in the new house it's completely different. The boys have a couple of windows that still show a good amount of light at night, but the girls' room is pitch black at night. It's been a problem when Emily has woken up in the middle of the night, as it's hard to see her to comfort her.

This past week, Mark bought two nightlights--one for the boys' room and one for the girls' room. I put them in the rooms the other night and it was blinding--like daylight! So I moved the boys' nightlight into the closet connecting the two rooms but left the girls' closet door closed and left their nightlight in their room. Last night was the first night they slept with nightlights. As I was falling asleep last night, I thought I heard Emily wake up a little, but then I didn't hear anything else so I started to fall asleep again. I then thought I heard a few sobs (which I actually thought was Danielle) but again they stopped immediately. When Emily wakes up crying she goes into all-out crying, so I figured both girls were just dreaming.

Tonight when we put the girls to bed I kissed them both and then turned their nightlight on. I walked 2 steps out of the room and Emily immediately began crying. I walked back in and asked her what was wrong. Through sobs, she said "...light." I asked again and got the same response. So I turned the nightlight off and she settled down. I caught Mark in the hallway and told him what had happened. He thought it was as odd as I did so as soon as he went into their room he turned their nightlight back on, and once again immediately Emily started crying. As soon as he turned it off we were able to settle her back down and she fell asleep.

After she was asleep I went in and put another (dimmer) nightlight in. We'll see if she wakes up. If she does, I think we'll just leave the nightlight in the closet between the rooms and leave the door open a bit.

Wednesday, July 29, 2009

All in the day

Picture me.

(I realize some of you don't know me so this may be a bit more difficult...just play along.)

Picture me.

In a 3-hour meeting.

With 30+ of my closest friends coworkers and various people I've never even seen before.

Now picture me dumping my iced mocha all over the floor in the first ten minutes of said meeting.

And then standing on napkins for the remainder of the meeting to try and soak said mocha out of the carpet.

There's a reason I'm not named Grace. ;)

Tuesday, July 28, 2009

Giardia

Yep, both of the girls have it. It's weird because all of the kids have been diagnosed with it upon coming home, but none of them have ever shown any symptoms. Since they'll be in close contact with other kids at school and church the pediatrician wants to go ahead and treat them. And I have memories of this. The boys threw up for every day of their five-day treatment, and the new pediatrician is recommending the same medicine (metronidazole). Interestingly, metronidazole is not approved by the FDA as a treatment for giardia, but it is the most commonly prescribed drug to treat it.

I've got a call in to the pediatrician to see if we can switch meds to tinidazole. It is similar to metronidazole and may still cause vomiting, but it is a single-dose treatment and has an 80-100% cure rate for giardia (metronidazole's cure rate is lower). And of course the metronidazole costs $8 and the tinidazole costs $40. But it's totally worth it if the girls are not throwing up for five days!!

Monday, July 27, 2009

Even more base ball

Yesterday was more base ball but this time at their home field. We're ramping up into busy base ball season so we've got games most weekends from here until September (which is not that far away!). The kids and I don't usually go to the away games. It's just a lot to manage when I don't know the area and they don't know their boundaries. Since yesterday was a home game, they had a great time playing and they know exactly where all of the dirt piles are to play in. ;) And play they did! Danielle at one point was scooping up dirt and --no joke--pouring it over her head. While I don't object to them playing in the dirt, I draw the line at showering in it!

The boys and Danielle made a dirt "highway" on the concrete path and they used their trucks to cart the dirt back and forth. They also cleaned up the park by moving big tree branches off of the path so they weren't in the way (their idea, not mine, and very sweet!). Then after base ball they got to take turns batting with their small bat and ball. So far no one has whacked anybody else in the head with the bat and they even make contact with the ball every once in a while. ;)

Danielle is really getting into base ball and she loves to bat. She also loves to run, which is fantastic because I don't think she had done much running in the orphanage. Her running gait is still pretty awkward but much improved over when she first got home. Her first couple of weeks home it took her a little while to figure out that she could run--now she'll run pretty much any chance she gets! She's also walking down 3 or fewer steps without holding on to the railing. When we first came home she would hang on to the railing and use her arms to pull herself up and down. Now she actually has enough leg strength to be able to walk up and down the stairs! Her legs and core muscles are not yet strong enough to allow her to walk up the stairs without holding on but she's getting close.

Saturday, July 25, 2009

Base ball

Today Mark had a base ball exhibition in Monroe City, MO. Never heard of it? Neither had we. ;)

It's close to Hannibal (for any Mark Twain fans) and is about 2.5 hours from St Louis. Some friends of ours have a house up there so after the game we went to visit them for dinner. The kids got very dirty (at the base ball game) and very well fed (at our friends' house) and they slept part of the way home. I was surprised they didn't sleep the whole way--I certainly could have.

Of course I realized when we got to Monroe City and were unloading the van that the camera was still sitting at home. :) But at least we didn't forget any kids!! LOL

And just because I like remembering the funny things the kids say...

Dima has been telling me every night about his two stuffed animals, that they are "penny pigs"--or at least that was as close as I could get to guessing what he was talking about. And every time I would ask him what he was saying, he would drop the first word and just call them "pigs" (one was a baby pig and one was a daddy pig). Last night at dinner the boys were talking about going to the zoo, and Dima made a comment about Emily and the "penny pig"--to which I excitedly replied "OH, the GUINEA pigs! That's what you've been saying all week!"

Friday, July 24, 2009

Emily and speech

Emily had her first speech session on Thursday. It went well, and the therapist is really pleased (and surprised!) at how well Emily can do several of her sounds and how motivated she is to work. From what the therapist said, at this point they mainly do drill work to help her solidify the action of making a sound--i.e., pursing the lips to make the "w" sound.

Emily worked on "p", "b", "w", and "m". We're supposed to be focusing on encouraging her "m" and "w" words this week.

We're still waiting to hear back from the plastic surgeon as to his current final decision for her palate. I say current final decision because he may decide he wants to wait until she is a little bigger and then consider surgery, so we may do something temporary to block her palate hole until she is older. The most likely option is an obturator, which is a retainer-type thing which will cover the hole in her mouth. It still won't give her the opportunity for normal speech however, as there are some sounds that require the soft palate to move and the obturator would not be able to do that. But it would help with much of her speech in preventing the loss of air flow through her nose. So we'll see what he thinks is best and take it from there.

Wednesday, July 22, 2009

Tuesday, July 21, 2009

I am nothing if not persistent

A few days ago we received a letter from Children's Hospital (where we go for therapy) stating that our insurance had been billed for a month's worth of services but had not paid.

So I called Children's to make sure that was still current, as the original letter had been sent to our old address and then forwarded. Yep, insurance still hadn't paid--and hadn't denied the claim either. AND has paid for the months since then. :)

I then checked online. No, it wasn't even showing up in my claims listing. I called the insurance company and found out they had submitted a letter to the hospital asking for progress reports from therapy the second week of June (the bill was for services from the month of April; why it takes them 6 weeks to decide to send a letter requesting documentation is beyond me). Then I called the hospital billing department. Yes, they had received the notice from the insurance company and had forwarded it on to the therapy department, but there wasn't any note on the account saying that billing had received the progress notes back from therapy to send on to insurance. She assured me she would follow up with therapy but that it wouldn't hurt if I did so as well.

I called and left a message with our therapist to give her a heads up that she was going to need to be giving somebody some progress notes, then called the therapy billing department (who know me by name). She told me she had just received the email from the hospital billing department and would be getting in touch with the therapists to get the progress notes back to hospital billing who will then send it on to insurance.

Wow.

There went 4 hours of my life. ;)

And in a week or so you can bet I'll be doing follow-up calls to make sure everything got where it was supposed to be going.

Sunday, July 19, 2009

Visitors

On Thursday Mark's parents arrived and we've been quite busy!

Friday the goal was to wear the kids out, so after therapy in the morning we came home and had lunch then went to a wading pool. All of the kids absolutely love the water and we had a great time. It's quite the preparation to get everyone suited up and in sunscreen but it is a wonderful way to wear them out.

Friday night we saw "Godspell" at the Muny. I'd never seen it before and it was not what I was expecting (I really liked it). I particularly liked the story behind it--of how and why it was conceived. I wonder how many people that see it actually pay any attention to the message in it or if it's just another fun musical.

Yesterday Mark had a base ball game in Illinois. The kids and I haven't been going to the away games as it's just too much for me to manage right now with the girls not knowing all of their boundaries. With the extra adults (1:1 ratio!!) it was a much more pleasant experience for me. :) We ate a late dinner at Qdoba (kids eat free on the weekends this summer) and then we all crashed. There are no pictures because the camera got left at home--just picture four very dirty, tired, and happy children. ;)

This morning was church and a full day of playing. Mark and his dad hung the new bathroom door and patched the walls in both bathrooms. Only a few more things and the bathrooms will be completely done (for the time being)!

Dima's loose tooth is really loose and I expect him to lose it in the next few days. I've been making a bigger deal out of it than I normally would for a loose tooth because it's such a great example for him of growing up. Plus I really think he can use the extra positive attention. :) Now we've got to decide what to do about the tooth fairy!

Wednesday, July 15, 2009

Potty training

When we first met Emily, we were told she was potty trained (even though they kept her in diapers). Which was great...except she wasn't. She had wet diapers on at least two of our visits and a...uh, stinky...diaper on another occasion. ;) But we were told she knew how to wait to go on the toilet (or the pots that they use for the little ones in Ukraine).

As soon as she was ours, we started in on potty training and we put her on the toilet just like the big kids. She did know what it was for, and would usually go to the bathroom in the toilet--but also in her pullup. And she wouldn't tell us when she needed to go, so if we didn't take her regularly we were guaranteed a soggy pullup. Thankfully, she's only had two actually dirty diapers since coming home and those were both within the first two weeks of being home. She has been asking to go to the bathroom when she needs to poop so that's been great. But really, we would love to get her out of the pullups.

I've tried using training underwear and also plastic-covered cloth underwear (like all-in-ones) and she wet in those just like the pullups. But I was pretty sure she was capable of staying dry and just didn't see the need when she was in pullups or anything that felt like a diaper.

So I ran an experiment. ;)

On Monday afternoon, I let Emily run around with only a shirt on. She stayed dry. Today, she went without a pullup nearly all day and I just put her shorts on. I did put her in a pullup for nap and when we ran an errand. But she stayed dry all day (even during nap!). And when she doesn't have a pullup on, you can tell when she starts needing to go to the bathroom. She gets kind of antsy. When I noticed that, I didn't wait for her to ask to go to the bathroom but just sent her in. Hopefully that will help her association that feeling of needing to go with the action of actually going.

She can go to the bathroom completely independently now, including getting on and off of the toilet (without a stepstool) and flushing, which is her new favorite activity (I have to watch her because she will flush the toilet over and over again!). Hopefully in another couple of months we will be pullup free--at least during the day!

Tuesday, July 14, 2009

Dental work

The girls had a dentist appointment scheduled in September, but I called yesterday to see if we could get in earlier because one of Emily's teeth has really been bothering her. They were able to get us in today.

That was the good news.

Actually, Danielle's visit went really well. No concerns for her teeth, continue with good brushing and flossing, etc.

But poor little Emily's going to be going under anesthesia again. And this time she's going to be out for quite a bit longer--they estimate all of her work will take about an hour and a half. She's going to have a (or maybe two, I can't remember) root canal and will have a bunch of other work done as well. She has a lot of decay on her teeth, particularly her back molars (where the root canal will be done). The dentist doesn't want to pull her teeth as the lack of those molars will cause problems when her adult teeth start coming in. Right now her dental work is scheduled for September, but they are hoping they might be able to fit her in next week since it's causing her so much pain.

Monday, July 13, 2009

A bloody day

Today was just one of those days.

Zhenya got whacked in the nose with a piece of wood (yeah, the infamous wood). He's got a nice scrape and several bruises around his nose.

Dima launched himself off of the sidewalk and didn't make quite the landing he had apparently hoped to make and instead got a very bloody knee (from his landing I thought he had scraped the tops of his toes, so he's probably better off that it's just his knee!).

Danielle got a big iron chair knocked over on her on the back porch (I didn't actually see any blood out of this one, but she's got so many bruises and scrapes right now I'm not sure I'd notice a new one!).

And Emily got attacked by killer mosquitos that bit her all over and she scratched several of the bites open.

I've started making the rounds with antibiotic ointment at night asking who needs it where. ;)

Sunday, July 12, 2009

Certified

Yeah, you can just label me as completely insane.

Friday I took 4 kids to the Science Center. Saturday I took 4 kids to the Botanical Garden (specifically the Children's Garden).

By myself.

We all survived, but I seriously question my number of active brain cells when I do things like this. ;)

Saturday was particularly fun because we walked to the Gardens and it had just finished raining. You would have thought none of my children had ever seen puddles before. They were all laughing and jumping and splashing--and we weren't even a block from our house yet! LOL

It was really therapy (shhh...don't tell) as I've been working with Emily on stomping. When she first came home she didn't have enough balance and coordination to pick up one foot and stomp on the ground (really, she couldn't even stand on one foot with the toe of the other foot down for balance--her balance and leg strength were very bad). Now she can actually pick her foot up and stomp! We've been working with stomping on bubbles and in the water at the wading pool to make a splash, so this was some good continued therapy for her.

The kids did a pretty good job (better on Saturday than Sunday, but they were able to run around more which is usually better) at both places and we all had a good time.

No, I did not take any pictures. I don't have enough hands for the camera, too. :) :)

Thursday, July 09, 2009

So close...

...well, not really. But you tried, right? LOL

They were playing dentist. Yeah, I was baffled by the wood too. So I asked. According to Zhenya, it's the blanket. Huh?!?

Ohhh, the lead blanket they drape over you when they take x-rays...that's really heavy, and apparently feels like wood to Zhenya. ;)

Dima has a new skill--he can snap! He's the only one other than Mark and myself that can do it so far, so we're milking it as a skill that he has as the oldest. It won't last long, but it's good for him to be able to do something that his little brother can't.

And as of this week, I am the mama of 7, 6, 5, and 3 year olds. Zhenya is turning 6! :)

Wednesday, July 08, 2009

Scenes from our day

This would be my non-mobile, non-verbal, possibly autistic 3-year-old (or so I originally thought). :) :) :)

video

(She says "help please" in the middle. She's trying to figure out how to keep the button on the handle pushed down while she moves the vacuum cleaner.) Emily loves the vacuum cleaner and is always so excited when I get it out. Today she decided to help! (And then got mad when I took it back so we weren't vacuuming all day!)

I'm curious to know if anyone can guess what Zhenya and Danielle were playing out on the deck this afternoon...


Tuesday, July 07, 2009

Eye doctor follow-up

Danielle had her one week follow-up appointment this morning. The opthalmologist said all of her measurements look great. Her right eye appears to be drifting a little bit towards the outside, but is "nothing to be concerned about." So we won't be! :)

Her eyes do look really good. There is still some redness on the inside corners, and it is especially noticeable if she is looking to the side. Her eyes don't seem to be bothering her anymore and we've finished up with her eye drops. I'm excited that she'll be able to start school with correct depth perception!

Yesterday I had to call and cancel all of Dima's remaining OT appointments. We had been told that his OT/speech co-treatments would only require one copay, but unfortunately that turns out not to be true. And of course with insurance you don't find out until months later. So we now owe quite a bit in copays for May and June (with the therapy copays you don't pay at your visit, they bill insurance first and then you pay the hospital after insurance clears). Since we feel that at this point his speech is of the utmost importance, we're going to keep him doing that twice a week for as long as we can (i.e., as long as we have insurance that will cover it!). We've already set up his speech times for the fall to allow him to go twice a week after school. We'll see how that goes, as it's a lot for him to go to school all day and then go to speech but he really needs the help.

Sunday, July 05, 2009

First overnight trip

The weekend started with a trip to a local parking garage on Friday night to let the kids watch the city fireworks. Danielle doesn't like the loud noise of fireworks or thunder and we didn't want to fight with the traffic and all of the people (and the rain!) so this turned out to be a great option. The boys would have preferred to be closer, but they managed to be content. They all took naps in the afternoon but it still didn't make up for how late we kept them up. :) We did baths and put pajamas on before we left for the fireworks so we could just throw them all in bed when we got home.


Saturday we left for a short overnight trip to visit family a few hours away. This was actually at the end of the trip, so you can see they did pretty well!


Saturday afternoon we went to a local park close to my mom's house to let the kids run off some of their "sitting-in-the-car" energy. :) They had a lot of fun playing with my sister and her fiance (Jon's pushing Danielle, I'm pushing Emily, and my sister is swinging).



Saturday night we did "fireworks" (little ones that don't leave the ground) in the street outside of my mom's house. The kids all loved them, although Danielle preferred to stand a little further back than the curb. ;) I think in Emily's book fireworks rank a close second to food. She had a blast!


Sunday we headed home, but not until after lunch. The kids got to spend a little bit of time with my granddad whom they all really like. The boys are always asking about my "mama's papa" when we haven't seen him for awhile.

Saturday, July 04, 2009

Dentist appointment

The boys' dental appointment went great! They love their pediatric dentist and are always so excited to go there (it probably doesn't hurt that they've never had to have any work done!). The dentist said their teeth look great--no cavities and minimal plaque. I had been concerned that the boys' teeth might not be in very good condition since we've been letting them brush their teeth by themselves. However, the lack of soda and sweets in their diet apparently makes a big difference in keeping their teeth healthy (go figure! LOL).

And...Dima has a loose tooth!!!

It's one of his bottom front teeth. I'm so excited because I was really beginning to wonder if he was ever going to lose any teeth, and since he just turned 7 it seemed like he should be losing some by now. As it turns out, only a few of his kindergarten classmates lost teeth this year, so I don't think he's really as far behind as he seems. The dentist said many kids don't lose any teeth until second grade so age-wise I think he's right on target!

Friday, July 03, 2009

Ask and you shall receive!

During one of our many visits to St Louis Children's Hospital, I scraped the top of our van on one of the sprinkler lines in the parking garage. I was frustrated about the scrape, particularly since I've driven through that spot in the parking garage many times, but I was more concerned about the fact that we will be going to Children's many more times over the next few...months?...years?? ;) and I didn't want to keep scratching the top of the van.

So I called Children's and explained what had happened. After being transferred to security and then to parking, I was transferred to the head of parking/security. I asked if there was somewhere else I could park to avoid hitting the top of the van. I now have the woman's office and cell phone number and she told me to call any time we are coming in and they will make sure there is a spot available for us. The first two levels of the parking garage are higher but they are almost all handicapped spaces and the ones that are not are usually full. They can allow us to park there or they can reserve spots in a parking lot across the street from the garage. The woman was super nice and so willing to help, but I never would have even known there were options if I hadn't called!

I took advantage of it this morning and it was wonderful. I called and let them know we were coming and they had a spot reserved for us by the time we got there. No more scratching the top of the van (at least in this parking garage!). And you can bet if we need to go somewhere else (hotels, etc.) I will be asking about alternatives to low parking garages! :)

Thursday, July 02, 2009

Surgery today

They just seem neverending, don't they? ;)

Emily's surgery was this morning. The ENT put in ear tubes which went great. No complications and nothing unexpected.

The plastic surgeon for the cleft palate team also took a closer look at her palate while she was under anesthesia.

Unfortunately, the news there is not so good.

Normally when a child is born with a cleft palate, the tissue that would form the palate does not fuse together in the womb. The tissue is still present, and it is a relatively simple surgery to sew the tissue together to close the palate after birth (obviously, depending on the situation it can be a more or less complicated surgery). In Emily's case, a palate repair was attempted in Ukraine and it failed. We don't have any more information than that, but as a result she has very little tissue left on her palate and most of what is remaining is scar tissue. The plastic surgeon was able to get some great pictures of her palate which he is going to send to a colleague for a second opinion on options for her, but he was not optimistic.

Our options pretty much stand as they did before, with the added option of not fixing Emily's palate at all--and with the understanding that there is a decent chance that any surgical repair would fail again. In the surgeon's words, her speech will then remain "unintelligible" for the rest of her life. We are still waiting for an official opinion from the surgeon as to what option he thinks will work best for her, but we won't be having surgery again anytime soon as far as we can tell. We will go ahead and start speech with her at the end of this month to give her the best ability possible to communicate with what she has. In addition, we will continue teaching her sign language (which she loves and uses to "talk" to herself!) to give her as many avenues of communication as possible.

Good thing we all sign around here. Guess God had a good plan for putting her in a family with a former interpreter. ;)

The boys are heading to the dentist this afternoon. Any votes for whether or not someone will need dental surgery?? LOL

Wednesday, July 01, 2009

Pictures

The day before the surgery (notice where her left eye is)

Almost ready to go home from the hospital
(sorry it's so grainy but I didn't want to use the flash!)

The day after surgery
I was a little concerned the first day after surgery that they didn't release her eye muscles enough (her left one still looked turned in to me), but I think they look better now. That last picture shows how red the inside corners of her eyes were, but even after one day they have really started to clear up. We were expecting MUCH worse based on what they prepped us for!