SLCH

It's a good thing we love Children's Hospital so much, and that it is so close! We are spending three days there this week, although very thankfully all as outpatient.

Tuesday was one hour of speech for Emily. Normal time, normal activities for the rest of us (playing in the rooftop garden).

Today was a tooth extraction for Tim. He had full sedation and was intubated (which was a surprise for Mark and I) and had three teeth removed. He had an extra adult tooth on the top row that was preventing a few of his adult teeth from being able to drop down. This also meant he had not lost some of his baby teeth since the roots were not being dissolved by the incoming teeth. No worries; he lost two baby teeth and an (extra) adult tooth today! He did great and is the first of our kids to undergo anesthesia without throwing up afterwards (he's the third kid to undergo full anesthesia, and another has had nitrous). We had prepped him pretty well. He felt miserable when he first got home. He took off his coat and shoes and went straight upstairs to bed. I think he thought that's what he was supposed to do as I had told him that when he got home he wouldn't feel good and would want a nap. ;) After he woke up he ate a bit, watched a movie (a very special treat in the middle of the week around here!) and then started playing. By bedtime he was pretty normal, but a little more subdued than usual. I made sure he knew to wake me up if he woke up in pain. Sometimes our kids just don't think to come tell us if they have problems at night since they spent so long without anyone to help them. :(

Tomorrow is speech for Emily in the morning (school for all the rest in the cafeteria!) and then a physical therapy evaluation for Danielle in the afternoon. I was hoping we could get those scheduled concurrently but I'll take a separate eval time if we can try to get regular therapy times coordinated! We had put off having Danielle do PT for quite a while, giving her time to strengthen her muscles and simply be upright for more than a few hours a day. But now I am concerned about her posture and think she probably needs to do some more stretching and strengthening to prevent back problems in the future. Our pediatrician agreed so we'll see what the PT thinks after the eval tomorrow.

Thankfully the kids are very used to our crazy schedule and are learning to do school pretty much anywhere. That's particularly good as both Julia and Danielle will be starting speech therapy next month. I think we're going to need our own schoolroom at Children's!

Therapy and a wedding

Our days here are filled with normal, for the most part. Danielle's ankle study is almost done, and I am so happy for that. I do believe it has strengthened her ankles, but I will not miss the extra three days of therapy we've had. The other kids have been relegated to a kitchen off of the therapy room to do homework while Danielle is in therapy. It's not ideal and sometimes we have a hard time getting everything done that needs to happen at night. But the kids haven't complained at all and I'm so grateful to have kids who are accepting of our sometimes bizarre schedule.

One of the things I neglected to blog about was our trip to Colorado. We went to Colorado for a quick weekend trip for Mark's sister's wedding. We flew out there on Southwest and the kids loved it. It's the first time they've all flown together and they did so well. Apparently they're spoiled by the international traveling though, as they wanted to know where the music in the armrests was and why there weren't any TVs. ;)

My future sister-in-law (as of next July) managed to get this picture of us. I was impressed she managed to get all of us standing still. :) :)

Alex

Alex has had the most struggles with the beginning of the school year. A lot of the reason I wasn't posting was because of that--we were trying different things and I was hesitant to post until we had figured out what was going on.

We still haven't figured things out. :) :)

At the beginning of the school year, Alex started having "emergency" bathroom runs during school. And then he started having accidents at school. It has taken a lot of guessing and trying and...well, everything, to determine that this is not physical or a medical condition. Once we figured that out and implemented some controls at home (i.e., giving him the choice to pee in his pants or the toilet, but him also having to deal with the natural consequences of that--thanks, Diana!) all of a sudden all of the accidents at home went away. His teacher has not been willing to let him deal with the natural consequences so he is still doing emergency bathroom runs at school. But interestingly enough, only at about 3 pm, so just in case she doesn't let him go and he decides to push her on it, he only has to sit in wet pants for 15 minutes.

Smart boy.

So we've had a lot to get a handle on with Alex. I'm not sure why this popped up all of a sudden (and I do mean all of a sudden) but such is life. Other than that, Alex is doing well at school. His biggest struggles are in math but he is one of the top readers in his class and he LOVES to read. We're working a lot on his reading comprehension but a lot of that is starting to click as well. He is still excellent at spelling. It's been fun for me trying to figure out how to help the boys learn things because they learn so differently. Alex is a visual learner so when he is learning the states (all 50 of them) we write the names on the states--it doesn't work for him to write a number that corresponds to a list, or to do a puzzle of the states, etc. But for Tim (who as I mentioned CANNOT spell) he needs things hands-on, so I have been cutting up his spelling words and he has to put them in the correct order. His grade on his spelling test last week doubled after doing that (and it was still a really bad grade--that's how bad of a speller he is! LOL).

In other news, Alex has started counseling with a fantastic therapist. She actually has a couple of years experience counseling orphans in South Africa, so she understands more about Alex's background and some of the grief issues he deals with. Alex is doing great, and he's adjusting well, but we still feel like he has some trust and bonding issues related to the many changes that happened over the course of a couple of years in his life. We want to give him whatever help we can to become a whole, happy little boy and he LOVES going to see his counselor E. She's seeing a lot of the same anxiety as we do (stress over schedule changes, etc.) and I'm really hopeful she'll be able to help Alex learn some good coping skills for that.

First days

School has started, albeit sporadically. :)

The boys started in 2nd and 1st grade and had full days of school last Thursday and Friday. The girls (both in kindergarten) had orientation on Thursday and a half day on Friday, so I really consider Monday their first day of school.

So far, we're not seeing anything unexpected. And yeah, that last sentence just made me laugh out loud. :)

Alex is working on control (of his teacher, not himself) and we've given her some thoughts on dealing with that. Nothing major, but stuff he knows better about and just has to test at the beginning of school. Monday he came home with his memory Bible verse for the week and he's already recited it to me (from memory) two days in a row. Tim is a little freaked out about 1st grade as he's realizing he was pretty much allowed to coast through kindergarten and now he's actually going to have to work. I really like his teacher and she'll be great for him. Danielle's behavior has actually been way better than I expected (or her teacher is holding out on us). She's loving being in kindergarten. Emily is pushing every button she can trying to figure out this kindergarten thing. She's being pretty defiant and if it keeps up we'll have no choice but to put her back into preschool. Thankfully she's not acting out at all, just not doing what she's asked to do. As in her teacher says tells her table to stand up and she sits there and looks at her while everyone else gets up. :) Her teacher has 16 kids and I'm not going to prevent them from having a good kindergarten year just because our daughter is causing problems. We'll see if she can manage to settle down. She really wants to be in the big school, not the preschool, so we're using that as leverage.

Danielle's first few days of ankle therapy have gone well. She goes on Monday mornings before school and then Tuesday and Friday after school. Coupled with Emily's speech on Thursdays after school and we've managed to pack a lot into the week. Thankfully, Danielle's therapy is in a place that is quiet with no one else around so the boys can get their homework done there (and Emily if she has any). The ankle therapy is only about 45 minutes so we can still be home by 5 and have dinner by 5:30 (if I've planned ahead ;)).

So far so good. By the end of this week I think we'll be pretty well settled into the new routine. One day at a time!

CP study

Today I took Danielle for an evaluation for an ankle-strengthening study for kids with cerebral palsy. Knowing that we only have a tentative diagnosis of CP, I had explained all of her background to the physical therapist heading up the study in case they needed to exclude her.

The took lots of video of her walking (with the cool reflective "sticky balls" stuck to various joints) and measured her muscle response with electrodes. They tested her ability to stand up without using her hands, to jump, to run, to sit and balance while bending for various objects, and to step over obstacles. A few highlights of the day:

The therapist wanted to see Danielle walk up stairs, so she took her to some stairs and had her walk up them holding on to the rail. Then she showed Danielle how she wanted to see her walk up the stairs without holding on to the rail...step, together, step, together, etc. So Danielle went over to do it and promptly walked up the steps...step, step, step, step. I started laughing and asked if the therapist had wanted her to stop on each step. She had a look of astonishment on her face as she said "no, that will work just fine!"

The therapist did lots of measurements and feels (as we do) that Danielle does not fit the norms for a child with CP. She has a couple of markers (toe-walking and strabismus) but none of the typical muscle tightness markers that most kids with CP have (and no typical brain injury markers for CP). She spent a lot of time saying "this is so interesting" and "this doesn't make any sense" as she measured various things. :)

Everyone at the study got a big kick out of Danielle's English (she's understandable, but sometimes she says the weirdest things!). So the therapist taught her to say "gluteous maximus" for some of the muscles she was attaching electrodes to.

Danielle was really a trooper. It was about 5 hours of testing and she was so good-natured about it. She will be in the study which means we have added 3 hours of therapy to our week (I know!). But the therapy is free and is targeted to strengthening her ankles, which we know she needs. I did tell the therapist that I already knew the outcome of their study, as I have watched Danielle's walking improve tremendously as her legs and ankles have strengthened. :) I think we totally piqued the therapist's academic interest in a case like Danielle's, where her circumstances made her underlying medical condition much worse than it needed to be.

Update on Danielle

Danielle's eye seems to be healing really well! She hasn't complained about it bothering her at all this time (last time her eyes seemed to dry out more). I think they worked on a different muscle this time and as a result she hasn't had nearly as much redness as with the first surgery. I need to call and set up her follow-up visit with the surgeon to make sure everything is healing well. Then we'll go back in 3-4 months to see if her eyes are lining up correctly.

I really hope so. It would be great to be done with surgeries for a little while and I know Danielle would be happy not to go back!

In the meantime I'm applying for financial assistance through the hospital to see if we can get Alex's therapy covered since our insurance is still refusing to cover it (even though they did for part of the year...sigh). He's made such great progress with his therapist that I hate to have him switch at this point.

I hate Thursdays

I consider myself to be a pretty even-keeled person. There's not a lot that gets me terribly agitated, and very few things that I would claim to actually "hate."

I HATE Thursdays.

Thursdays involve a normal workday for me...up at 5:30am (that's the goal, since I need to leave the house at 6:15, but I wouldn't say I always hit that ;)), work 8 hours, pick the kids up at 3:30, drive to speech at 4. Before we get to speech I have to get their assignments out so the ones who aren't doing speech can do their homework since there won't be time when we get home...which also means the night before or that morning I need to make sure I pack pencils, a glue stick, a ruler, and the pictures Danielle needs for her homework. Head home after speech at 5. Get home a little before 5:30 (I am so thankful we live close to our therapists!) and scramble to get dinner and feed the dogs while 4 kids whine and argue try to be patient.

It is miserable and I do not do a good job at being patient with them, which makes me want to change things. I told Mark last night that I can't do Thursdays anymore. :) And I proposed a solution.

Right now Alex is not going to speech because we are still trying to work out the insurance issues. So from now on, I will leave Alex, Tim, and Danielle at the after-school program at school. They will love it because they will get to watch a movie (after they do their homework). I'm going to see if Emily's therapist can see her at 3:30 instead of 4. After speech, I'll pick the kids up at school (a little before 5) and head home. We should end up being home before the time we get home now. Dinner prep will still be a little crazy, but the kids will have had a little more time to just relax at school so that may help. And yes, I've tried crockpot meals, quick meals, no-cook meals...it's still crazy. I think the only thing that would make it less crazy is if I picked something up (pizza or fast food) which I really don't want to do.

Some days I just want to throw in the towel. No more therapy, no more school, no more work. The kids and I will stay home and play all day. But somehow, I'm guessing that's not what's in any of our best interests long-term.

But boy is it tempting.

Continual therapy

We try to incorporate a lot of therapy into the kids play in non-obtrusive ways. In fact, with pretty much everything they do I look for opportunities to tack on some therapy--my definition of therapy being structured activities to help bridge gaps or repair deficits in their knowledge or skills.

Here are some of our current "therapies":

Emily struggles with going up and down stairs and jumping. Her legs are not strong enough yet although they are amazingly stronger than when she came home. To work on her leg muscles and her jumping, we have been playing a game where she climbs onto a phone book and "jumps" off. It's not usually a jump (she usually steps off one foot at a time) but she has jumped a couple of times and I make a big deal out of it. I sit in front of her to encourage her and to catch her if she loses her balance. We also work on stepping up and down on the phone book alternating legs. I've also worked some on this with Danielle, but I usually try to keep it to one child at a time. The benefit to doing two or three at a time is we also work on taking turns. :)

All of the kids LOVE to cut. If you want to keep them busy for an hour, give them paper and scissors. :) Danielle does a great job using the scissors but struggles with being able to cut productively, so we've made a game out of me drawing lines on the paper for her to cut. First we started with straight lines which she can cut really well. Then we did zigzags which I stapled into crowns for the kids. Now we are working on circles (these are really hard for her--even big circles). Part of the problem is that she thought she was trying to save the paper on the outside of the circles so she would cut her circles apart in the process of trying to "cut out" the outside edges. Now I've given her incentive to cut out the circles. When she finishes her circles, I put a happy face on one side and a sad face on the other. Then we talk about "happy" and "sad" and the corresponding faces. This is great for language and emotional development, too. :)

We drink raw milk that we get from a local farmer. Recently, I've started skimming the cream off of the top and we've started making butter. On Saturday the kids helped me with this. We all looked at the cream as it started, then passed the container (a clear plastic container) around and took turns shaking it (which was really good for some of my coordination-challenged kids!). We practiced listening for the sound of the liquid and looking inside the container to see what was happening. They loved that we had butter at the end so we had fun and a good "lesson" at the same time.

End to a great week

Alex ended the week really well. He only brought home one unfinished paper each day on Wednesday and Thursday and both of those were completed within 15-20 minutes at home with minimal fuss. I don't know how long it will last--I'm not so naive as to think we won't have a regression or two ;)--but I'm enjoying it and I think he is too!

I won tickets to the circus through another local blog so we all went to the circus Thursday night. The boys have been to Circus Flora but the girls have never been to a circus before. Danielle was a little overwhelmed and scared at the beginning. It was loud and dark with random lights and she had no clue what was going on. But as it went on she enjoyed it more. Emily thought it was the coolest thing ever. The boys liked it except that Alex had some issues with some of the tricks. At one point, they "sawed" one clown in half. Alex was on the other side of Mark, but apparently he was shouting "No, no, don't do it, it will hurt!" to the clowns.

What's really awesome about that is that it shows he is developing theory of mind. One of the components of theory of mind is empathy. When Alex first did testing for his speech apraxia the testers were concerned that he did not show good development of theory of mind--in other words, understanding that other people do not perceive situations the same way you do and may not feel the same way you do. So even though Alex was comfortable in his chair, he was able to understand that a clown was about to be "sawed" in two and that that would hurt that man (that the man was not comfortable just because Alex was comfortable). That is an amazing jump in emotional maturity for him! He was also worried when one of the acrobats was going to jump through a ring of fire.

Friday the kids were off of school (we would NOT have taken them to the circus late at night if they'd had school the next day! ;)) so everyone got to sleep in. Since Alex had done such a good job with his work last week I just let everyone play all day. It was a great day and we had a lot of fun home together!

Dima's very bad day

It's been a while since anyone's had a bad day, so I guess we're about due. :)

Yesterday, Dima had a really bad day. Now, I need to qualify that by saying that for some parents, when their child has a really bad day it involves hitting or screaming or running away. Thankfully, we have experienced none of those behaviors with any of our children. Dima's bad day consisted of a bizarre amount of regression. He spent pretty much the whole day in his old wailing fits, more or less one after the other. What was even more bizarre is that it carried over into speech therapy yesterday afternoon.

When his speech therapist came out to get him, I didn't mention anything about his bad day. I was hoping that he would behave differently for her (as has happened in the past) and I didn't want to bias her in expectation of poor behavior.

Apparently, I should have warned her.

She kept him the whole hour, but afterwards she said she basically spent the last half-hour redirecting him. He chewed on his hands/fingers until they bled, couldn't focus, and whined enough to drive her to distraction. She said she's never seen him act so much like a baby (her words). And from what Mark described of Dima's behavior yesterday at home, what the speech therapist saw was just a continuation.

What's frustrating to me is that I can't figure out the trigger. I have three guesses--a new stuffed animal he's been playing with (that he's had for a long time but just started playing with), the concert the kids went to yesterday with Mark, or school starting in a few weeks.

OR--maybe it was just a bad day.

That's the hard part about having children with an unknown history. I'm always second-guessing, trying to make sure we're doing everything we can to help our children heal. But it's really hard to help them heal when you don't know what hurts! And how do I know that he wasn't just having an out-of-sorts day...one of those days where everything just feels wrong (heck, I have those days too)...and he just doesn't have the language to help him talk about it and process it?

Last night at dinner I asked him a few leading questions about the concert on Wednesday. I got normal responses and nothing that would indicate that that was a trigger for his behavior. I've pretty much ruled that one out. I'm leaning towards school starting as the trigger, but it's just puzzling. He says he's excited to go to first grade (and he really is--you should she his eyes light up when he talks about it!). He knows his teacher's name, he knows other kids in his class...so maybe it's just that he's anticipating the change in routine.

So...we'll keep plugging along, being consistent, and trying to get to the bottom of the problem if there seems to be one. In the meantime, I hope he has a better day today!

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.

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.

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. :) :)

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.

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

Updates on all

The van: I love it. I love love love it. I would also love if it got 45 mpg, but hey, nothing's perfect, right?

Dima: Dima is struggling with being expected to actually do work on his own now that school is out and we are homeschooling over the summer. And yes--it's pretty much full, all-out school with reading, writing, math, etc. And you can't play until you finish your work, which on one day took him until 3:30. See? A full school day (we start right after breakfast). Dima's learning that if he stays focused and does his work that he gets done faster. This is a great lesson for him to learn now. :) There are some areas where we feel we were grossly misled as to his abilities coming out of kindergarten. I'm not sure, honestly, that he is really ready for first grade. We're going to ride out the summer and re-evaluate when school starts again. Dima has speech therapy twice a week and his therapist is really excited about the progress she's seeing with him.

Zhenya: Zhenya is breezing through the work he's had so far this summer. It's a pre-kindergarten "curriculum" to prepare him for kindergarten so it starts out with a lot of very basic concepts that he already knows (shapes, colors, etc.). I'm ramping it up a bit with him to make sure we get to the things I want him to see/know before he starts kindergarten in the fall. Other than that, he's our resident mouth who likes to talk just to hear himself. He and Danielle (our resident "twins") are two peas in a pod and are nearly inseparable.

Danielle: Danielle also participates in "school" in the mornings. We introduced numbers in English this week and she has been able to remember and apply them in every day life. Her English is coming along very quickly and her new favorite word is "silly," which is aptly applied to her two brothers quite often.

Emily: Emily can now mostly dress herself including putting her shoes or slippers on and off. She can nearly go to the bathroom independently but needs help getting up on the toilet. We have stools but they tend to get moved by one of the bigger kids--go figure!--and she doesn't move them if they're not where they need to be. She's not entirely potty-trained yet. She won't let us know she needs to go to the bathroom if she's doing something fun or playing outside, but she's doing great about letting us know other than that. She's doing much better about communicating with us through both signs and words and will hopefully be starting speech in the next few weeks.

Me: I love being at home. I love being with the kids all day. I do not always love working with Dima on his schoolwork. He can be as stubborn as a very thick brick wall. But I'm making progress on figuring out what works best for him.

Mark needs the computer so I'll have to update you on him later. He's staying busy with work and base ball! :)

Not-so-great news

Yesterday was Emily's evaluation for her cleft palate surgery scheduled in June. She saw the surgeon, the ENT, the audiologist, the speech therapist, a psychologist, and a nurse (I think that was everyone!).

Most things look good. The speech therapist is thrilled with her interest in talking and her willingness to mimic expressions and sounds. She gave us a few ideas of things to work on at home and we're going to get a scrip from her pediatrician to start speech therapy as soon as possible (before the surgery). The psychologist said everything looks good and she doesn't see any reason not to have the surgery (they like kids who have been adopted to be moderately attached and comfortable with their new parents before they do surgery since the kids need so much comforting and are in so much pain afterward). The audiologists said mild to moderate hearing loss, but they didn't feel the test was very accurate. The ENT wants to put tubes in her ears for no good reason except that they put tubes in all of the cleft palate kids (not a reason I'm thrilled with, by the way).

Then there was the surgeon...

When I called and set up Emily's appointment with the cleft palate team, the nurse asked me if her cleft palate was "complete", meaning does it go all the way front to back. My response was no, it is closed in the back. She was a little confused since the palate closes in the womb front to back, so if a child has a cleft lip and palate it will be open completely, front to back. I thought I must have been confused or misunderstood what it would look like to be completely open.

No, I was right. It is closed in the back.

The surgeon believes that someone attempted to repair Emily's palate in the past. Something happened either during or after the surgery that removed the tissue that would have been used for her cleft palate repair. What he believes is most likely is that she developed necrosis of the tissue that had been used to close the palate. The tissue that was forming her new palate died and went away. What this means is that she does not have any tissue left that could be used to form a new palate as in a traditional cleft palate surgery.

Final verdict: At this point, Emily cannot have her palate closed in a traditional surgery. They are hoping to use her scheduled surgery date to put tubes in and take a look at her palate and explore the options. The options basically come down to this:

1) They can take a flap of tissue from the inside of her cheek. The surgeon has not had good luck with this in the past so we aren't very interested in this option. ;)

2) They can form a ceramic retainer that she would wear all of the time that would form a false palate for her. They don't usually give those to children as young as Emily since her mouth is still growing so quickly and it is hard to get the children to keep them in.

3) They can form a new palate using tissue from somewhere else in her body.

4) Our most likely option...They can cut a flap off of the back and center of her tongue. This flap would be sewn into place as her new palate but would remain attached to her tongue for several weeks until new blood vessels grew in the palate area. The flap would then be detached from her tongue and would form her new palate. Our surgeon has normally done this surgery on children much older than Emily (as in 12yo and up), but has recently returned from an international trip where he worked with doctors doing this surgery on children of all ages with very good success.

At this point we won't have any more information for closing Emily's palate until after her surgery at the end of June. We're hopeful that she will be able to have a normal palate some day!

Speech therapy

Yesterday was Dima's first speech therapy session. I loved it! Even more importantly, HE loved it!

His speech therapist has picked a starting sound for him to work on--"t". He can say the "t" sound, and he can say it in words, but it tends to get lost in conversation. So for example, Dima can say "cat" but a phrase like "Where is the cat?" comes out "Where ca?" This is part poor motor planning (being able to get the muscles of your mouth to work the way your brain is telling you to) and part poor speech habits developed most likely through neglect at a young age. Speech therapy is going to work on strengthening and training his mouth muscles as well as helping him listen and plan his speech correctly.

Dima's speech has already been improving remarkably over the past few months, and I know the social environment at school is a big factor in that. While I'm not fond of all of the behaviors he picks up at school, the sheer amount of verbal interaction is a huge help to him. In fact, this week at dinner was the first time I have ever heard him use the word "the" correctly in a sentence, unprompted.

Most of Dima's speech is hard to understand because he leaves out so many articles and other words that to him are minor but make a huge difference in the clarity of his communication. We are, in many ways, somewhere around a 2-3yo speech pattern. "Mama, cat!" "Look, truck red" He has made tremendous improvements, and when he's paying attention and not tired he's getting closer to a 3-4yo in his speech. But we've still got a long ways to go.

I think that most likely without speech therapy he would eventually have normal or near-normal speech. But why would we withhold a resource from him that can do nothing but help him? So for the rest of the school year, he will be doing speech therapy 1x per week, and once school is out he will be going 2x per week. Pray for me, if you don't mind. I'll have 3 kids in the waiting room with me during one of those sessions. ;) Perhaps I can get Danielle's and Emily's therapies scheduled at the same time. :) :)

Which brings me to a question. How do I explain to Zhenya why he doesn't get to go play at therapy like the other kids? He already asks why he doesn't get to go like Dima, but it's only going to get worse when he's the only one not going. He's going to think he's being punished. :) :)

DIMA'S GETTING SPEECH THERAPY!!

And yes, I'm practically screaming (inside, of course) with joy over this!!!

I just got a call from one of the speech therapists (SLPs) at Children's Hospital and insurance has APPROVED Dima's speech therapy!! This is such a blessing, especially because the pediatrician had told me on Friday that there was no way insurance would cover it (even though he supposedly wrote a letter of medical necessity in support of it!).

But we're COVERED for 90 visits per year! The plan is to stop OT while he's doing speech therapy. He's made great progress in OT but the speech therapy will be covering some of the same areas. The tentative, best-guess diagnosis is speech apraxia, and a lot of that involves the motor planning and sequencing that he's been working on in OT so there will be some overlap in the areas they are working on.

We're still working out scheduling, but I am jumping for joy over here. This has completely made my day! :) :) :)

No word

We haven't yet heard of our facilitator has received our dossier, although it was delivered last week. She has at least one other family in-country right now, so I know she is busy! Wouldn't it be great to get confirmation that it was not only delivered but also submitted? LOL A girl can dream. :)

In other news, Dima has been making progress like nothing I've ever seen. His reading is making tremendous leaps and he can read short sentences now. I'm not sure he always understands the full sentence--he bases most of his comprehension on words he considers to be key words. In other words, I think for him the sentences "Sam is a cat" and "Sam has a cat" have the same meaning. All he's really getting from the sentences are "Sam" and "cat", although if there are other verbs that he knows those do factor in (i.e., for "Sam sat on the cat" and "Sam jumped on the cat" he would know the difference). I can't be sure of his comprehension, since his expressive language isn't good enough to explain to me what he understands, but that's my hunch right now.

Last Thursday his OT decided to try some therapeutic listening with him during his OT session. Basically therapeutic listening involves having a child listen to specially programmed CDs twice a day for 30 minutes each time. I can't go into all of the details of TL here, but it sounds interesting and if there are additional therapies that will help Dima we're all for it. We haven't started the program at home yet; the OT wants to try it a couple of times in therapy and see if she thinks it will really help him first.

Both of the boys are loving gymnastics, but especially Dima, who last week told me "Mama, I love gymnastics lots lots lots!" They are always asking when they can go again. :) It is amazing to see Dima's coordination improve, and I'm always surprised when he can do things better than Zhenya. Even though Dima's older, his coordination and strength are less than Zhenya's so it's easy to forget that he's older when they're running around. But he is much better at backwards somersaults than Zhenya! Last week they worked some on a floor balance beam and both boys did really well. It's amazing to see how much Dima's balance has improved since he came home.