Therapy, Pictures, and LOTS more Pictures!

This blog has sort of taken a back seat lately. Let me explain where I've been :) You might get a little fatigued just reading this, so make sure you're well rested before reading ;)

Most weekday mornings go a little like this:

Shawn gets wakes up the earliest (he is a morning person, I AM NOT!). He enjoys his alone time before anyone else is awake (I enjoy my sleep time and most mornings have to work really hard to convince my brain to get my body out of bed!). Anyways, Mila and Sofia wake up around 6:30 most days. He gets them going and then I get Zoya up around 7, or 7:30 if she's still sleeping! THEN we hit the ground running.

If Shawn works early, I fly solo, which means I have to get Zoya to school by 9:15 with the other 2 in tow. I have 3 heads of hair to brush and pull back-Mila is the worst as she absolutely hates having her hair brushed! 3 mouths to feed, mixing up and feeding 3 bowls of supplements and vitamins, Zoya's meds, undress and dress all 3 (Zoya can help a bit but the other two try to escape often as I'm trying to get them dressed). Brush 3 sets of teeth, 2 fresh diapers and 1 trip to the potty for Zoya. Therapeutic Listening therapy (30 minutes) for Sofia as she eats breakfast, make sure to get Zoya's 15 minutes of swinging in to help her have a less impulsive day at school, try to at least change into a clean pair of sweatpants and brush my own hair, maybe a little makeup, and hopefully I get a chance to brush my teeth and put some deodorant on! Next up we have 3 pairs of socks followed by 3 sets of SMOs (ankle braces), followed by 3 sets of shoes (which are really hard to put on squirmy babies). Somewhere in there I clean and put 2 pairs of glasses on 2 of the 3 girls and thank my lucky stars both girls are so good about wearing their glasses! Recently we added 30 minutes of eye patching in the morning to Zoya's routine, so I try to remember that too. Next I argue with Zoya for 5 minutes about the fact that she cannot take every stuffed animal she owns to school. I tell her to pick one, and she always picks two and tries to bargain and I ALWAYS win, but it's a battle (well the one day she shoved 3 Minnie Mouse stuffed animals in her backpack and I didn't know until we got to school haha). Then we put coats on-thankfully Zoya is nearly independent with her coat....so long as she FINDS her coat and not the one 3 sizes too small.

Depending on the time and the weather, I either put them in the wagon and walk (pull/push) them to school, or put them all in their 5-point harness carseats and drive them to school, unbuckle and unload all 3 into the wagon so I can walk into the school building to drop Zoya off, only to turn around and put Mila and Sofia back in their carseats, throw the wagon or stroller back in the truck, and then drive home. When I walk, there is one big hill that nearly kills me every time since their total weight including the wagon or stroller is about 123 pounds! It's never easy to actually get into the school building. There is a curb cut missing for the "walking route" which brings us up on the side of the school. The curb cuts to pull the wagon up in front of the school are almost always blocked by vehicles who shouldn't be there, so then it becomes a game of fish (me) swimming upstream dodging sharks (other cars), just to get to the sidewalk in front of the school. 3 mornings out of the 5 we have an in home therapy either starting at 9 or 9:30 (figure that out if I drop Zoya off at 9:15 mmm hmmm). Some days I feel like I get home only to turn around and pick her up at noon. When the weather is really bad sometimes Gramma Liz comes over so I only have to take Zoya out. Also, when Shawn goes into work later, I can almost hear the angels singing Hallelujah because it's so much easier when he is here!

Speaking of therapies, they take up A LOT of our time. Since 2 of our girls are under 3, they receive their therapies in home. I'm so thrilled that Pennsylvania has not made the cuts that many other states have and that we can access such abundant therapies, but sometimes I feel like that's all we ever do. Sofia has occupational, speech, and physical therapy bi-weekly, and Mila has physical therapy and developmental/behavioral therapy weekly, and speech and occupational therapy bi-weekly. This doesn't count the outpatient therapies that we do on an as needed basis. On Tuesdays we do 1 or 2 hours of physical therapy, depending if it is Sofia's on or off week, then go to mommy and me dance class, which takes us right up until lunch and nap time. Those therapy times are only the times in which the therapists are here. That doesn't reflect the time we spent practicing and carrying over their therapy goals. They each give us homework which we work on throughout the week, A LOT. Did I say we do A LOT of therapy?

I feel like I'm forever trying to find the balance between "therapy" and just letting them be kids. Let's face it, when you have children with special needs, you have to parent a little differently. The things that come to kids without special needs naturally take a lot of time and practice for our girls to learn. I'm so happy to help them along the way, but often feel overwhelmed with all the possible therapies we could be doing. Heck, I often feel overwhelmed with all the therapies we are doing. It's a swinging pendulum...sometimes I feel like I need to hit the therapy stuff harder with them, and then sometimes I take a few days to just let them play, play with them, love on them, and let them watch mindless cartoons. I know my girls need the therapies, but I always want to make sure we're not putting too much pressure or stress on them. Afterall, they are only 2 years old! If your child doesn't have special needs, they likely don't have therapies, and they don't have many different adults coming into their home asking them to do really hard things. Sometimes I feel badly about that, but it comes with the territory. Having so many therapy goals, I try really hard not to lose sight of the fact that they are just kids and all they REALLY need is love. Of course the therapies help them because in the end they're learning things that will make life a *little* easier for them, although life will always be more challenging for them.

To help myself get a better handle on making sure all the necessary therapies get done, I came up with a little "lesson plan" (forever a teacher). It is basically a daily checklist of all the things that I hope to get done. Some of the things on there need to be done daily and some can be done as time permits (several times a week). I can write notes on the side and then when the therapists come I can review how their week went. I also write down any questions on this page so I can remember to ask the therapist. Some weeks I print this off and use it and other weeks when I know we have a ton of medical appointments or commitments, I don't bother with it and just do the best I can. It's all about finding that balance.....by the way, that "balance" is still on the run and I'll keep looking for it ;) This form is forever revolving as we add and take away certain activities. You might think this is "hard core" but it's what my brain needs to stay on track. When I was teaching I never could follow my lesson plans well by time blocks, but having a list of all the activities that need to be done lets me be flexible enough to make snap decisions based on how the day is going for the girls. If they are tired, physical therapy activities are not going to be a good idea at that time. If they just seem to need to get out of the house for a bit, then I can try to fit some sensory activities in then by going on a leaf hunt, or something like that! On my form each letter stands for each child's name. If the same letter is listed 2 times that means my goal is to try to fit that activity in 2 times throughout the day. And yes, I had to add "snuggle," not because I don't pick them up often throughout the day, but it helps me to take more intentional 1-1 time with them (it's all about the balance remember?) I also added "child-directed" and "parent-directed" play because with my teacher mentality, sometimes I forget to just get on the floor with them and follow their lead and that type of play is SO beneficial, so if it's written down for me to remember, I'm more intentional about doing it!

This picture was taken when they went down for their nap that day, so you can see what we accomplished by nap time. I've NEVER been able to check everything off this page all in the same day, that would just be  CRAZY. BUT, I can look back at the previous days to see where I've been slacking and where I can lay off a little. It helps drive my plans for that day. I hesitate to share this because some moms will probably freak out and say "Oh my gosh I'm totally not doing enough." Let me just say, please don't feel like that! Several of these things can be done together. For example, Sofia can wear her weighted vest in the swing while listening to her Therapeutic Listening...and BAM three checks at once :) This just really helps me to remember the activities I should be striving to do. With just one child it was much easier, obviously, and I didn't need anything like this. Now with 3 all needing individualized therapies, this has helped me a lot! I totally understand that there are families that have kids with special needs who would totally think this whole thing is crazy, but it is what works for US. I promise I'm not a crazy woman doing every therapy that ever existed...each of these are things that have been researched and/or suggested by therapists who know the needs of our children well! We do have a lot of fun together as a family, just being us...which is USUALLY what I post about...but this is a "behind the scenes look" at why I never have time to blog anymore ;) Also, please remember, there are days that hardly anything on this list gets done (swinging ALWAYS gets done though, that's our favorite HAHAH).

We've been swamped with medical appointments lately-mostly for Zoya, surprisingly. She checked out well at hematology/oncology and for that we thank our lucky stars! I told that doctor I hope I never ever have to see him again and he didn't take it personally :) She's still rebounding very slowly-sleeping 11 to 12 hours at night and back to napping every day for about 2 hours, sometimes 3. We're having her heart checked out since it's been about a year and a half since her last echo and sometimes fatigue can be a sign of heart problems. Her heart was repaired in Ukraine so anything is possible. She also has a urology appointment after her "possible" UTI, and then will be having her tonsils/adenoids out on HALLOWEEN. We've been through the ringer with her these past couple of months and I hope after this surgery she'll be back to her normal healthy self! At her last eye appointment she was diagnosed with "binocular vision suppression" which means her brain has started ignoring her right eye completely and she could barely see even very large letrers with her left eye covered. That earned us some "patching" time which thankfully she's doing very well with! She's had a rough start to the school year as well since her aide quit after 2 days with her (that's a new record for us). So between that, being sick, and missing lots of school, it's been a slow and somewhat painful start to the school year for her. She has a new aide now and we're on the upswing! 

I will try to do individual updates on the girls, as well as explain some of our therapy activities in a little more depth! If you have any questions leave them in the comments and I will try to address them. I'd also like to post soon about our plans for Mila's transition to preschool age (YIKES)....well okay so we don't have any plans yet but her transition meeting is coming up and I've got LOTS of thoughts on all if it...so many thoughts they take up most of the hours I should be sleeping! I'm overdue for Sofia's "10 months home" post, but I did 9.5 so I'll try to hit 11 months home! Also coming up tomorrow is the 4 year anniversary of Zoya's heart surgery, and our 2 year anniversary of our "metcha day" or Mila!! 

Even when the days are busy and I feel like I'm running from one thing to the next, I'm so thankful for my family....for an amazing husband who works really hard to provide for his family, entertains my crazy ideas and helps implement new therapies....and for my 3 precious girls who are worth EVERY.SINGLE.SECOND. of planning, therapy, lost sleep, and stress....because those things don't compare to the joy they bring us. They don't compare to the feeling of triumph when they are able to reach a goal that many people said they'd never reach. One sweet kiss from Sofia, one tight snuggle from Mila, or one "I love you way more than you know" from Zoya makes everything right in the world. The good stuff far outweighs the tough stuff and when I lay my head down on my pillow at the end of the night I feel so appreciative, and so undeserving of all the good the Lord has given me! 

And if you just came for the pictures, well, here ya go! 

Mila LOVES her books! She will sit and turn pages and point at the pictures for a good 10 minutes! 

Papa and Gigi sent a birthday present in the mail for Sofia.....none other than....TIGGER! He wiggles and bounces in about the same fashion as Sofia! Zoya is scared of the thing, so he spends a lot of time locked up in a closet but he gets to come out and play when Zoya is at school! HAHA! If we accidentally leave him out, I know right away by the "HOLY S***" look on Zoya's face when she sees him! She will kindly repeat, "NO WIGGLES! AWAY WIGGLES! NO WIGGLES! ALL GONE WIGGLES! BUH BYE!" :)

 Here is one of our mornings, all 3 girls with headphones (Sofia doing therapeutic listening and the other two just listening to some children's music)...snacking on some cereal while I get breakfast ready! I found this was one way to have a quiet 10 minutes in the morning to get my thoughts together! 

Sofia trying to take Mila out by ramming her with her head! 

Mila is so proud of her ability to stand from the floor and take some steps...she does it OVER and OVER and OVER all day long! 

Some cute pictures before bed one night :) 

I could NOT get Mila to stand still, she kept walking to me while the others looked on and laughed! 

There she goes again! 

Funny girls...not sure what is up with Sofia's eye HAHA! 

Mila was sad (I can't remember why) and you can see her sisters were so concerned! 

So thankful they have one another! 

Every now and again, when Mila is sad or gets hurt, after she stops crying she still comforts herself by looking at her hand....she has done that from the first week we met her in the orphanage! 

Funny funny faces! LOL! 

Somehow I missed the last 11 years and Zoya is now 16! HA! 

Striped jammie babies watching Elmo before bed! 

Sofia loves stacking and unstacking things! (She also loves throwing, so watch out)

She is putting them in the bucket one by one! 

I filled the bucket up with blocks for some heavy lifting work for her :) 

Sofia is our little power lifter! Wearing a weighted vest and ankle weights for PT!

Fender Bender! 

Very scary when they're both moving at the same time! 

Stinker baby must have heard me talking about getting rid of the swing...Mila doesn't care that she's too heavy to make the swing move much, she just likes chillin' in it! 

Mila has been so sweet with her baby dolls! She snuggles them and holds them....until she sees us looking at her, at which point she chucks them across the floor as if to say, "I totally wasn't playing with that baby nicely or anything." 

This is nothing new...she is a one woman wrecking crew and this was just the beginning...anywhere she can fit herself into is fair game! 

One of our homework assignments for PT for Mila is to have her push a weighted wagon (of about 10 pounds)....well she passed that goal pushing her 27 pound sister! 

And a free ride from Sofia after all that hard work! 

We're getting SO MUCH use out of this swing! 

A precious moment, even if it lasted only a minute :) 

What you can't see is Sofia reached up and grabbed Mila's glasses/pigtail....clearly Mila is annoyed! 

Mila says, "I know just how to pay her back!" Whack!

Another day of PT homework....doing hills....Sofia face planted on her way walking down the hill...got up and just kept going! 

And not to leave Zoya out :) Pretty girl wearing her pirate eye patch! She likes to say "aaarrrrrrr" like a pirate when she wears it HAHA! 

I just LOVE her new glasses! They are SPECS 4 US frames designed specifically for people with Down Syndrome! They are the only ones that fit her face!! All other glasses slide right off her non-existent bridge of her nose! 

A snapshot before picture day! 

Something about Zoya and tights with stripes! I just love it! 

Sunday bum! She looks so old to me here!