Scenes from our day

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



(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...

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.

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.

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!

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! :)

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

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!