Picking up from where I left off

Yesterday I started talking about what's been going on lo these past many moons. I'll pick up from there today.

Life in general:
Galyna got to experience a new side of life, too, this year attending her first two funerals. The first was a memorial service for Joe Szymanski, a family friend of Shan's family. Galyna had met him once or twice, but the somber nature of the service did get to her. Joe is one of a kind and is missed. The second hit harder - my grandfather passed away just shy of his 91st birthday this past August. Great Grandpa Joe was someone she knew a bit more, talked about quite a bit, and saw more often. This was also a full funeral, including visitation, mass and graveyard ceremony (including burial). (I'll blog more about that in a bit, when I'm ready...Grandpa Joe taught me a lot and is also very much missed).

These events were, while bittersweet (we know both are in peace) were also interesting to me as I watched Galyna - really all three girls - with their first taste of grief. We tried to explain what was happening, talk through the reality of life & death, and answer their questions. In some ways, though, it was most interesting to see Galyna's response. It seemed the sadness & grief drew her out somewhat more than we'd seen in the past. We weren't looking for encouragement at such times, but it was provided. She is finding ways to be open at times.

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Galyna has also been continuing in her dance classes. It's been good for her coordination and motor skills, as well as giving her an outlet outside the home for gaining confidence. She enjoys performing as well as just the fun of dancing. Her recital is in the Spring...if you're local, let me know and I'll get you the 411 on the date/time.

She has also been taking swim lessons, which is also helping in the confidence and physical development. It's amazing the way her strength and coordination have improved - ahead of her other development, actually, which I guess I would have expected. She also likes to play outside, and is physical in her play. It seems to be working for her as she's by far the healthiest of the girls in terms of general illness.

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We have been attending Grace Church since before we brought her home as long time readers know. Galyna has been doing well at church, taking part in Sunday School and enjoying the times my parents attend with us. She is very popular and liked - nay, loved - which has been a source of support & strength for us all. As far as things of faith, she is asking questions. As with all things, she is still working on understanding, and we're not sure how her background will affect her spiritual self as she grows. Needless to say, we just continue to pray she learns truth:)

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At school & church, she is making friends well. Our only concern in that department is that she choose her friends wisely rather than indiscriminately. This concern is shared, of course, for all three girls. This is not a surprise as she is an outgoing girl who dislikes being alone. She has taken especially to a couple of girls, closing in on "bff" territory. Yay Galyna!

Looking ahead:
This winter we'll be looking at a potential 3rd round of surgery, which would be in all likelihood her last. More to come on that. We're also coming up on her third Christmas in the family (already? Time = flying, no?) and this is a naturally exciting time for all the kids. This spring we're planning a family vaca of a Disney cruise, and this will definitely be a first for Galyna which I'll report on here. Otherwise, we continue to grow, to take steps forward (and sometimes sideways or backwards) toward what we'll eventually be. But this is the lot of families, and I wouldn't change a thing.

Thanks as always for your love & support. Until next time -
Ron

2010 - A retrospective

Seems like just yesterday I updated this blog, but it's been a year? Wowza. Time has really gotten away. But I suppose that means there's much about which to write. So here goes...

...when last we left the story, Galyna had her second surgery. After the gauze came off we saw, much to Galyna's delight, increased coverage of hair. It was so awesome to see her excitement when she saw how much more hair she had. She took her restrictions well, and it was good to see her schoolmates continue to treat her well.

February saw our first family vacation in a long time, where we took a week in Florida with Shannon's best friend (and her family) at the Magic Kingdom. We'd taken the other two to Disneyland a few years earlier, but this was the first time for all three at the big park in Orlando. We stayed in an awesome resort as guests of Tom & Becky (Tom's in the President's Own Marine Corps Band, so we were able to stay on site) and overall it was the most enjoyable weekend we'd had as a family aside from the trip to Ukraine to get Galyna:) Needless to say, the parks were all a big hit with the girls.

This spring saw Galyna finish first grade. Her English is still improving, although she needed a 2nd summer of summer school to continue her progress. If she came to the US the equivalent of 3 years behind, she's probably up to 1-1/2 years behind. It must help having chatty sisters.

This summer was an interesting experiment. I returned to Donetsk with my church's mission team. Galyna had some anxiety and openly wondered (and went on record against this) if I'd bring back another child. I think she was relieved when I came back with only stories, pictures and souveneirs.

During the summer we were able to take Galyna back to Chicago for my grandfather's 90th birthday. It was a great time - we saw all the family, including each of my brothers (with associated gals) and spent some time with one of the finest men I've ever met. I'm very glad all the girls have a chance to get to know their great-grandpa.

This fall started 2nd grade, as well as a new adventure. We started therapy with Galyna, and have an official diagnosis of Reactive Attachment Disorder. There is a secondary diagnosis we may have to deal with too, as she appears to be symptomatic for attention deficit too (although that may be due to the RAD, meaning we need to treat the RAD to find out if she also has attention deficit disorder.) This is not at all a surprise as one of the key components of RAD is indiscriminate sociability. She has always shown greater affection outside the family (e.g., hugging strangers and non-family members much more often than those of us in the family) and refused to even show any unrequested affection until just recently. Having the diagnosis is a big win, though, and we are starting treatment which should resolve the RAD pretty much completely.

Overall, she is doing okay in school. She is still behind grade level but progressing at pretty much the textbook rate. Her behavior has continued to improve, although it offers challenges. Beyond the language differences (she is still not able to explain quite everything she's thinking, which makes diagnosing problems tricky) she still shows signs of manipulation from the orphanage days. Not unexpected, but she's good at playing to an audience (i.e., her behavior at home does not match that in other forums at times.) Her honesty has improved, though, which is another big win. We take it as a sign that she's starting to trust more in the permanence, as well as starting to realize that deception leads to trouble in a way honesty doesn't. The incidences of jealousy of her sisters have also decreased, and her oil/water moments with Tierney are fewer and farther between. In all, the three girls get along better - in fact, much like sisters. Over time, I suspect we'll get the rest of the way through the trouble spots. And, truth be told we are a lot further along than we were two years ago. God has been incredibly gracious in helping us to form into a family. We have far more ups than downs, although the frustration can be deep on all sides. The day her English is fully caught up will be a great day indeed.

Recently, Galyna also started round two on her hair restoration surgeries. The expanders are in and we'll start filling them soon. We're not sure if this is the last round or not, nor exactly how much restoration this will give her, but it should be of good benefit. It's amazing work, though, and we can't say enough about Shriner's. To get all this for free, by staff who are incredibly caring and gifted - God is indeed good. Our only complaint is every time we take her in she comes home with more gifts/toys; we're running out of places for them! And, sad as her history is, it is also nice to see people make her feel special - even in undesireable circumstances.

As to her faith...we're still not sure where that is going. As with the other two, she will obviously be free to make up her own mind. But I can't yet tell how much she believes vs. how much she parrots what others say. This is true for all the girls, but I think Galya's English makes it harder to discern. We only hope to give her the foundation to make wise decisions in faith as in all things.

Until the next time (and I'm hoping it's not another year) - thanks for your prayers & support. They continue to be a blessing to us.

God bless, Merry Christmas and Happy New Year!

Ron

Christmas & Surgery

Well Christmas with Galyna part deux was a bit different from last year. It's amazing how much has happened in only one year. For one thing, Galyna now speaks quite a bit of English. For another, she now is very well aware that Christmas includes gifts - which she absolutely loves. Apparently it crosses cultures that it's harder to get kids to understand that Christmas is about Jesus than that Christmas includes gift giving. Either that or Galyna has assimilated too well into American culture!

She enjoyed the time of visiting family and unwrapping gifts. She also took part in her very first kids Christmas program and appeared to remember all the words. Unfortunately, she ended up on the far side of the choir from where I was sitting so I ended up not being able to see her as much as I'd have liked. (Her sisters did a bang up job too, which I sha'nt forget.)

Now that Christmas has passed, though, we came upon Galyna's second surgery date - yesterday. For those of you new to the story, Galyna had four tissue expanders inserted into her scalp a few months back in order to help grow some new hair-follicle-containing skin which can replace some skin grafts on her head. Yesterday they removed the insert, and stretched the skin out to cover the graft area. The surgery went very well, and although we can't see her scalp for the turban of gauze covering her head, we trust the surgeon did quality work. There is still a chance the tissue won't have good blood flow, but for now things are pretty good. Her spirits are up, she has energy and the pain is non-existent.

She'll be on restricted activities for another six weeks to let her scalp heal, which should take her up to the mid-February trip to Florida. That didn't stop her from playing Candy Land and basketball with some teenage boys who came up with a group of Iowans bearing new toys/games for the hospital. She enjoyed showing them how to do sand art, and throwing an inflatable ball around. She pretty much has the run of the place (not many other kids on the floor) and the boys pretty much loved her to death. Typical for a Stewart gal, actually:)

It was interesting, and a bit creepy, to hear that some of her initial grafts were placed directly onto the skull, with none of the tissue between graft and bone which would normally be there. It was a reminder that there is still so much we don't know about her former trauma or treatments. It raises a few risks of the tissue not "taking" as well as it should, but we'll just let God take care of that.

As always, thanks for the thoughts, prayer and encouragement. The challenges remain (albeit in reduced or different forms) and the benefits are growing. Our next focus is going to be working on getting her to understand that this family thing is permanent. She still seems fearful of having to go back to Ukraine after some amount of time. It's not fun, but I can certainly understand how someone who's been abandoned multiple times might be waiting for the other shoe to drop. It's amazing how many challenges resolve to reveal another set, all of which are understandable based on what she's been through.

That's the latest; I hope your Christmas was merry, and your New Year is a blessed one.

Surgery Day

So today was the big day! Well, one of many big days for our little Ukrainian dochki. I'll assume you have read (if not, please do!) the back story in prior posts, so let's sum up and zoom ahead.

A few months ago we found that Shriners accepted Galyna's case. The procedure they would perform is called tissue expansion, which is basically the placing of saline-filled "balloons" under the scalp in areas where she has hair coverage. The amount of saline is increased over time, which stretches the skin. After a while, there is sufficient extra skin, with hair follicles, to cover areas on her scalp where there is no hair currently.

It's genius, really, and especially effective for this type of situation.

We showed up at the hospital today ~ 8:00, and the two-hour pre-operative process was fairly straightforward. There was a quick shower (did not see that on the pre-op prep instructions, or we'd have done that at home last night), the taking of vital signs and the ceremonial (or not) shaving of her head. After that we went into pre-op, where she was allowed to select her own scent (strawberry-kiwi) for the happy-sleepy gas, as well as the color for her bandages (pink.) From there the surgical team took Galyna into surgery, Shannon took Tierney & Amissa to their cousin's for a few days and I headed to the waiting room. Just under three hours later, Shannon returned and Galyna came out of surgery. The timing was propitious; they waited until Shannon and I ran down to the cafeteria for a quick lunch to let us know we could go see her:)

They placed four tissue expanders in her scalp, and clipped off one smashed fingernail (another trauma from her prior life.) As I type this, roughly 4 hours after she came out of surgery, she is just now starting to awaken. She's nibbling on crackers, watching cartoons and coloring her very own floppy hat. She's also going to color a baseball cap for her bear, Ashley, who kept her company through surgery. Loyalty like that must be rewarded.

The rest of this evening will be some more clear foods, rest, cartoons, rest, visits from my folks and maybe another friend or two, followed by more rest. They have placed Galyna on a PCA drip, which allows for her to get a boost of pain killer if she needs it, but so far she's been showing no signs of pain. Post-op narcotics and residual anesthesia seem to be taking care of that. Her energy will return in fits and starts, and in about 48 hours she should be back to completely normal.

The next event in the process is a follow-up appointment in early September where we learn how to add saline to her expanders. That will be interesting. My prior experience at a plasma donation center will come in handy, although I never had to stick a relative before. I just hope to earn some good brownie points by not having my wife do it.

Thanks, as always, for the thoughts, prayers and support. They are definitely felt and appreciated. With the way we've seen God work through all this it's obvious they are effective too.

God bless,
Ron

Surgery Day

Hello again -

Thought I'd catch you up, albeit briefly, on today's goings on. We take Galya down to Shriners hospital today ~8:00, and she goes in for surgery ~10:00. The procedure should take a couple of hours, and she'll be in the hospital for at least one, possibly two nights afterwards.

I'll be back again later to let y'all know how it goes:)

God bless -

Ron

The Latest From the Good Doc's

Today was step two in the process over at Shriner's. Galyna had a physical and a surgery consult. The surgeon took some more pictures, measured her scalp and walked Shannon through the procedure. Looks like Galyna will have four tissue expanders inserted the first go around.

We're still fairly sure that Galyna doesn't understand what the procedure will be like. Primarily because we haven't given her much detail yet; we want her to enjoy as much of summer as she can without a fear of another surgery in her too-young-for-this life. (Actually, nobody's ever really "old enough" for what she's been through.) You can tell she's nervous, though, as she gets squirmier than usual, and giggly. I'm not sure what her memories of surgery in Ukraine were like. We trust her experience here will be better, but if she has no memories of the past operations, or if those memories are bad, she'll have added fears going into it.

She is, as we know, healthy. She survived a blood draw, although there was much crying before the needle was even brought out. Promises of ice cream and the ever present toys were enough to calm her down.

Tierney and Amissa joined us for the excursion, which likely won't happen again. Delays led to a four + hour visit. We wanted them to see, and be somewhat familiar with, the hospital environment. They enjoyed the toys and games in the lobby, as well as the not-so-horrible cafeteria food. But it ended up being a long day.

So surgery is scheduled for August 24 ~ 10:00 a.m. There's one more physical, but that's the big day. Between now and then we have to also come up with the optimal way to get her to a better understanding of the procedure and the short-term impact to her life from it. She'll have to deal with no hair for a while, some discomfort when the expanders are filled and some obvious bulges in her scalp as the expanders, well, expand. This is an awful lot for a pretty little girl to deal with, but if there's anything we've learned about her it's that she's a survivor.

Thanks as always for the prayers and support. It is so very good to know we're not in this alone.

God bless,
Ron

The Consult

As I noted earlier, we had our first consultation with the folks at Shriner's yesterday. This is a hospital which specializes in treating children who've suffered burns or physical trauma. The trick is that they do not charge for services rendered so they are not able to take on all cases.

We sent in our application and photos a couple of weeks ago, and the initial screening appointment was set for yesterday. The surgeon took a look at Galyna's scalp, and they took some pictures. We didn't talk much about her other scars, but the surgeon (and this is the good part) said he thinks they have a reasonable chance to help with her scalp. So, we're in - at least for another step. July 2nd we'll go back and Galyna will have a more thorough exam and physical before scheduling surgery.

It looks like the approach on Galyna's scalp will be to use a process known as tissue expansion. In a nutshell, small "balloons" are inserted under her skin, and over time are filled with salinated water to expand the skin. This "extra" skin is then used to replace what is now the grafted area.

Downsides: discomfort, length and number of treatments, shaved head required, appearance is altered as the balloon inflates.

Upside: long-term best way to get hair coverage as it uses scalp skin (with hair follicles) for the coverage.

So, while it doesn't appear to be easy or simple, it seems the most effective.

That said, it's easier for us to contemplate than for her, I'm sure. We haven't yet (but we will when surgery is scheduled) talk with her about the procedure. She was obviously very nervous to the point of giggling through everything just having a doctor there. It helped that there were no needles, but I'm sure she remembers some of her past surgeries. In Ukraine she had surgery on her scalp last spring, so hospitals in general can't be exciting for her.

So, as far as our concerns go, dealing with her post-surgery healing and with filling her expaners from time to time (yes, they will trust us to do this!) and her overall antipathy toward all things medical would top the list. The one we had been worrying about - whether Shriner's would take on her case - seems to be behind us now.

God is good:)

God bless,
Ron