A Mila Update!

Mila has been making HUGE progress since having her tonsils and adenoids out. It could be a coincidence, or it could be that she's sleeping so much better and has a lot more energy (that's my guess!). She is sleeping in later (now she'll wake up around 6:30 instead of 5:30) most days and she seems a lot more well rested. She doesn't fall asleep in the car nearly as much any more. She only seems to get sleepy right before her nap. Before her surgery she was falling asleep throughout the morning...and she could fall asleep just about anywhere! Let me just say, I'm so thankful to have that one behind us....that recovery was ROUGH! It took her about a month until she was back to herself completely!

Since her surgery she's learned to pull to stand on furniture and cruise along furniture! She's walking in her gait trainer daily and even took a few steps yesterday without the "seat" piece attached! She will walk while holding our hands as well. She's still doing treadmill thearpy, which she has made a lot of progress in as well! She can walk for about 15 minutes, taking up to 25 steps at a time before putting her weight into the harness to take a break! She still has a long way to go to independent walking, but she has blown us out of the water with her HUGE progress in such a short period of time! I feel bad thinking that maybe the sleep apnea was holding her back more than we thought. But I'm so glad it's all taken care of now!

She's also saying "mama" to get my attention (allllll dayyyyy lonnnnnng!). While this is much nicer than whining, she's now perfected the most pathetic whiney "mama" if I don't get to her fast enough, or if I have to leave the house without her.....it is pretty adorable :) She says dada and bubble as well. She's babbling a lot more and her favorite sound is the cutest little "la, la, la, laaaaaaaaaaaa!"

The other HUGE thing she is doing, which TOTALLY surprised me, is going potty ON THE POTTY! She uses the big potty, too! I was going to wait until closer to 3 until I started anything potty related with her, but she has shown me she is ready to start now! It all started because she was in the bath and I knew she had to "go." I put her on the potty and she did her business no problem. So I did that a few more times after her bath and before we knew it she was pooping on the potty every single night before bed with only one poop in her diaper instead of the potty for almost 3 weeks now! She will also pee on the potty when I put her on there, but is not close to telling us when she has to go. If she were walking I'd start full out schedule potty training with her, but I think we'll wait until her gross motor skills improve a bit more. For now we'll just keep doing what we're doing and it's nice to have one of the two little ones not pooping in diapers anymore!! Mila smiles so big when she goes potty on the potty and we all clap for her....it's pretty darn cute!

While we thought we were done with surgeries for the foreseeable future for Mila, she'll be having yet another one in August :( It will be eye muscle surgery. Currently she tilts her head very far back to watch tv, or see things far away, even with her glasses. She does this because she has nystagmus and she has found a "null point" where the nystagmus stops and where she can see clearly. The null point happens to be when she lifts her chin up and tilts her head slightly. As she is getting closer to walking, and because we know she already has balance issues due to a brain difference, tipping her head back while trying to walk will throw her off balance even more and it could prevent her from walking independently. Her prescription also changed a bit, so she got new glasses! She outgrew the pink frames and we got her the next size up in purple :) I think they're adorable!!

Here is a Mila Photo Dump! 

At one point I joked about putting one tonsil or adenoid back in because she was still awake at 10:30 one night!!! And she was not even close to tired, as you can see! 

Her crazy sleeping positions still continue, even after surgery! She slept in this position for 45 minutes of her nap! 

Mila's new glasses !

Mila + glasses + pigtail s= most adorable thing in the world! 

My favorite picture ever of Mila! (I wish it was high quality and not cell phone pic!)

Mila, who was awake again while everyone else was sleeping for the night, was making her scary face! 

She was getting some morning snuggles in with mama since she's usually the first one awake! Check out her cute haircut! 

This is what her "posturing" looks like....she lifts and tilts her head quite extremely so she can see better. She was watching tv in these pictures. This is always how she looks when watching tv or looking far away. 

No exaggeration, she can see better this way...poor girl :( Soon she won't have to hurt her neck to see well. 

And here she is working on some fine motor activities. 

The focus! 

This happened when I didn't get her down for her nap on time! 

She still LOVES swinging! 

 Blurry pic again, but this is her at physical therapy....she loves the platform swing 

We were so lucky to find an awesome family who lent us their old gait trainer until Mila's came in. She finally got her very own PINK gait trainer :) She usually LOVES it and barely gives me enough time to buckle her in before trying to run off in it! 

 Proud Potty Face! 

Standing, only holding on with 1 hand! This is a huge accomplishment for Mila girl! 

Here are a few videos of Mila in action! 

Mila cruising...

Mila in treadmill therapy...

Mila walking in her gait trainer....

 

Here is Mila's whiny "MAMA!!!!" when I was pretending to leave without her ;) 

And this one was too cute not to include....."I've got no strings to hold me down" or "Riverdance" as Shawn says!

I have plans for so many more blog posts including Sofia and Zoya updates, Sofia's first haircut, Sofia's Welcome Home Party, Father's Day, and more!!! If only the day had a few extra hours ;) 

Potty Training...Poop Talk

Well it's a known fact that potty training kiddos with Down Syndrome can be a little trickier than those without. For the most part, we had it fairly *easy* with Zoya going pee on the potty. She has been in big girl underwear all day for just over a year (she's turning 4 in 3 weeks). We took it slow and steady and made progress over time. She very rarely has accidents.  The average age for potty training for kiddos with DS is 4 (according to the Dr. at the DS clinic). So we were thrilled that Zoya seemed to be catching on so quickly!

Pooping on the potty, if you remember from my other posts, has not gone as smoothly! She was terrified, as many kids are. So we didn't push it (until recently). The thing about Zoya is that she started ONLY pooping while she was in her bed wearing a pull up (either first thing early in the morning or right at the end of her nap). Now, this is GOOD because it means she never had poop issues at school or accidents out in public. But this is bad because that means if we were out of town she'd hold it, Miralax and all, for days, which would in turn cause her to have pressure on her bladder and cause accidents. It's also bad because it's so hard to catch her because she is in her bed when she does it! She's too smart! Anyways, we tried EVERYTHING. Rewards, bribes, consequences, open-door bathroom policy, having a party on those rare occasions she DID poop on the potty, praise, having her sit on the potty when we knew she had to go, letting her watch Elmo while she sat onthe potty, and more bribes.  Finally my last straw was putting the little potty in her crib while I stood there to see if she would go (it didn't work if you're wondering). All my efforts only earned me weird looks from Zoya and embarrassing role-playing by Zoya at school with the dollhouse (Zoya placing the mama on the potty and saying "POOP"). Hmmph.

I was at my wit's end. I knew Zoya was cognitively able to understand that she had to go in the potty. I knew she was purposely waiting to go in her diaper in her bed. I knew the fear side of pooping in the potty has dissipated. I knew it was just becoming a control issue and a habit at this point. So we decided to start getting Zoya up about an hour earlier in the morning and what do you know? She is now pooping on the potty about 4 out of 7 mornings a week! (The other 3 days she either doesn't go, or goes in her diaper before we get to her). I'll take it! I've been role playing with her and teaching her to yell from her bed "Mama POOP". She is starting to get the idea and will stand up in her bed and just yell...nothing in particular, but it certainly gets my attention! The only downside is that she is now still getting up an hour earlier than she used to...I guess I can't have it all! I'll take pooping on the potty and a new earlier wake up time over poop in her diaper!

So, the reason I'm sharing this is so when Zoya is fully potty trained one day we can look back and laugh....AND because maybe what we did will work for someone else....I know you're thinking "If ONLY it could be so easy".....believe me, it certainly wasn't....but just keep on trying everything and maybe you'll find something that works for your child!

Back at the Top!

Life is full of mountains, sometimes we're at the bottom looking up and sometimes we're at the top looking down while admiring our victories.....today we're at the top!! And I'm gonna celebrate!

Zoya had her best day ever at school last week! She sat in her chair for snack AND she sat for circle time on the carpet and wanted to help with calendar! Her teacher told her that this week she can be the calendar helper.  She also asked her teacher to take her potty when the teacher had forgotten to take her! They go potty at 10:00 and then again at noon I believe. Zoya gets taken one time in between there usually. Her teacher told me that she had forgotten to take her and at about 11:15 Zoya signed "potty" to her :) No tears at all...the drop off was great for the most part...she was a little clingy but separated much better than in the past. And Zoya didn't want to leave when I came to pick her up.....she was so excited to see me and looked surprised when she looked up and I was standing at the door....she ran over to hug me and then went back to play. I had to bribe her with Elmo (which she earned anyways for a good day) to get her to leave!

Potty Training.....well Zoya seems to be potty trained...I am scared to type that though. For 3 weeks she has been dry! The past couple of days she has been in big girl underwear and stayed dry! We went for our first car ride without a pull up and she passed the test! She is able to hold it much longer in between and asks us to take her potty frequently throughout the day!  She stayed dry for our two hour drive to visit family and the two hour drive back! Yesterday she even did #2 on the potty!!! She ran in while I was going potty and sat Elmo down on the seat next to me and said "poop." I said "HUH?" And she said MEEEE. I put her on and what do ya know.....big girl went!! Shawn came running down the stairs when he heard me screaming LOL. We had a Poop Party! I'm not holding my breath that this will happen again anytime soon, but a mama can dream right??

And speech....wow she is talking so much more. This therapy in Buffalo is really helping her. She has been saying "me do" and "me go" about a million times a day. Today I worked a lot with her on saying "I do" instead and she's got it down! She also said "I want more" (sounds like I wwaaahhh moooore-think New Jersey accent) to ask for more "makeup." When I put my makeup on in the morning, Zoya always asks for some and I run the brush over her nose...she loves it. So today when she said that I almost fell over! I said, "You want more???" And she smiled real big and said "YAH." I'm so proud of how hard she is trying. We've worked a lot on the word "up." Zoya says "uppa" because she always drops her jaw at the end. The PROMPT therapist showed me how to hold her jaw closed at the end of "up" and Zoya is now prompting herself to do it! It is pretty cute. We still have a LONG way to go but I'm excited to see such noticeable progress for the first time.

Zoya has really been changing before our eyes...I wonder if that has anything to do with the recent increased difficulty sleeping and separating....just so many changes going on in her little self! At any rate, I'm celebrating the view from the top of the mountain and enjoying it even more knowing I'll have days where I'll be at the bottom needing to remember how great it feels to climb back up to the top!

Pictures coming soon, I promise :)

Potty Update, Zoya Can Whistle, and other Random Cuteness

Potty Update: We've been semi-potty training for over a year but honestly I think its the best way to train some kids with DS....slow and steady wins the race.  No pressure, no stress.  Zoya had been doing fabulous with a potty schedule and was just about "schedule trained" around March-ish. She would stay dry as long as we took her about every 45 minutes. Well then one day she just regressed and was no longer even semi-schedule trained. We decided we weren't going to push it and we put her back in pull ups full time and didn't stress about it. I did NOT want potty to become a power struggle so I just gave it a little break. We still took her several times a day at that point but nothing like we had been.

After our Florida trip we started up the serious potty business again :) We decided (with advice from a friend who is a behavior specialist and mama of two) to only reward her for dry pants and ignore wet pants-as in not even say anything when she wet her pants. I wasn't sure about it, but Zoya needs LOTS of positive encouragement and tends to either shy away or engage in a power struggle when she feels forced to do something and then nobody wins. So for a few days we checked her pants every 10 minutes or so and if she was dry we made a big deal about it and gave her an m&m. After a few days Zoya started telling us she was dry on occasion and asking for an m&m...smart girl haha. And guess what? Zoya is now initiating potty MANY times throughout the day! If she hasn't gone in an hour or so we will ask her if she needs to go or just take her, but she has been dry most of the past week! AND I figured out how to tell if she REALLY has to go or if she is trying to get out of something LOL. If she's just trying to get out of something (like eating at the table) she will actually sign "potty." She also does this in every store we go to when she sees a door that could lead to a potty. But we know she really has to go when she grabs her pull up or underwear....not the best sign to use but hey it works for now! We're still using pull ups most of the time unless we're going to be home for a long period of time....but its great because she only uses 2 pull ups a day.  She usually wakes up wet after her nap, which I'm not worrying about for a while longer.  In a few more weeks I will have her wear the underwear more and pull ups less. Hopefully it keeps up! Oh and #2? FORGET IT!

Here is some Zoya cuteness because I haven't posted in a while! I've been a little busy ;)

And.....the other day Zoya and I were home alone and I heard this loud whistling....I though what in the world? So I peeked into the living room from the kitchen and she was sitting on the couch whistling! It's the cutest thing ever!! It's a little hard to hear on this video but if you turn the volume up you should be able to hear it. I'm going to try to get a better video when she's not looking! It seems like she is whistling by sucking air in instead of blowing out but I think she can do both! So funny! I couldn't whistle until I was in HS...this girls got talent!! I love hearing her randomly whistle throughout the house its so cute!

Creative Communicator and P**p on the Potty!

Shawn and I have been so impressed with Zoya's communication lately! She has such a hard time verbalizing what she wants/needs, but she very creatively makes her point known! She uses sign language quite a bit and we understand what she wants 95% of the time. Tonight we were taking a walk and she was in her little push car. She kept saying mama and moving her hands up and down in front of her-alternating arms up and down. I didn't know what she was saying. She kept doing it and I said, baby I just don't know what you're telling me. She then pointed to her foot and then pointed at the pavement. I said OOHHHH, you are signing WALK (and she was doing the correct sign for walk, but I had just never seen her do it before)! I said, you want to get out and walk? And she smiled huge and said YAH! and giggled. She is so proud of herself when she is able to communicate what she wants to us and even giggles with glee when we repeat back to her what she was trying to communicate! Zoya often makes up her own signs for things such as "upstairs" and then we have to play a guessing game trying to figure it out, but when we do, boy is it worth it...she gets so very excited! Zoya's expressive speech has been her biggest area of difficulty since coming home. I was pleasantly surprised to find out she tested around a 22 month level expressively in her recent evaluation. A lot of that has to do with how many signs she knows...that counts toward expressive language skills I guess. I feel so bad when she tries so hard to tell us something verbally and we just can't understand her...but thankfully she doesn't get too frustrated and finds another way to tell us! Although she continues to have difficulty with her speech, she has had a burst of words lately.  Some of her recent favorite words are "later" (pronounced laaay-llllurh), "dog" (sounds like duck), "up" (says uppa), yellow (llll-ehl-llll-ahhhh), purple (pur-bah), NO (changed from nah-nah to a very strong NO!), M & M (nem-en-em-en-em). I love hearing her little voice!

And onto the second part of the title....P**p on the potty!!! She was terrified to go on the potty and only ever went one other time a long time ago which I think was a pure accident....every time since, when I know she has to go I put her on the potty and she refuses to go. Then she will hide (or wait until nap time and go in her crib) and poop in her pull up. Tonight I knew she had to go so I put her on and bribed her with Signing Time-School and a cookie....nothing. So I took her off and she started going in her pull up, we ran to the potty and she refused to go more. Off the potty once more and she started going again, back to the potty and she starts crying and grabbing me looking terrified. I hugged her and comforted her (by the way why are kids scared to poop on the potty? LOL). She finally finished her business on the potty!!! She jumped up and grabbed me tight and then she looked in the potty and said "pah-pah" (for p**p) and started clapping!! We called daddy in to celebrate and you woulda thought we just won a million bucks! Oh the little accomplishments that are such big milestones. And to think at this time last year we were wide awake in the middle of the night stressing about our second court hearing a year ago tomorrow praying the judge would name us as Zoya's parents!! Who would have guessed a year later we'd be having a p**p celebration!!!

And to celebrate the day we were legally named Zoya's Mama and Daddy (a year ago tomorrow)...we are going to see ELMO LIVE!!! Oh boy! I hope she loves him as much in real life as she does on TV!!

Shopping Fun and some Zoya Updates

I think Daddy is in big trouble with this girl.....she had quite the day shopping! She likes shopping as much as her momma!! Uh oh!

We all have cabin fever here so this morning we decided to drive to the outlet mall. It was 40 degrees and a little sunny....just a small taste of spring....really hoping the winter storms are done with for the season!!

Zoya really enjoyed being outside and she can't wait for warmer weather either! She thoroughly enjoyed people-watching.  She never misses a bald guy and makes sure to point it out to each and every bald man who passes by pointing to the top of her head and saying "ba." She also has been saying "hiya" to everyone she passes and sometimes hitting people as they walk by (oops). Babies also rank high with our Zoya girl and she is always on the hunt for a baby to look at. As the snow was melting from the rooftops of the stores, it made it look like it was raining from the edges of the roofs and Zoya was mesmerized by the water. She pointed and said "ray" (for rain). She wanted to go in the puddles, but we'll save that for the spring when she has her puddle-jumping boots on!

Now for some updates:

Potty: Zoya seems to take two steps forward and one step backward in potty training but that is just fine with me because she is moving forward! She is in pull ups except for night time. She wears underwear for a few hours in the evenings when I can keep a close eye on her.  She knows that she is not supposed to go potty in her pull up or underwear but still has a couple accidents a day (except for today...even while shopping she was dry all day and even through her nap in the car!) At times it seems she could care less if she is wet but then other times she will sign sorry and point to her pull up, so I really think she's starting to get it. She does WAY BETTER when I put her in underwear and no pants as compared to when she is in a pull up.  But I'm still not confident enough to venture outside of the house without the pull up! She does ask to go potty often but also still needs MANY verbal prompts and reminders to use the potty. I ask her every 15 minutes or so (when shes wearing her underwear) if she is dry and she knows what that means. I will say, "remember we go pee pee in the potty not in your pants." And sometimes she will run to the potty when I say that, other times she will say "no." LOL. If she hasn't asked in a while, I tell her to go (and she ALWAYS has to take a toy into the bathroom with her). 

She has definitely figured out that signing potty will get her out of whatever she is doing...stinker. She often asks to go potty during meals, so we've started taking her right before we eat. And she ALWAYS signs potty when we are out somewhere...so typical. I have a new found disgust for public restrooms and am running low on my travel Clorox wipes! When Zoya is wearing underwear and is dry the whole time she gets a cookie and looks forward to that! After she goes potty she usually signs cookie..hey whatever works! I've also noticed Zoya is more likely to have an accident at home as opposed to when we are out somewhere. Strange.  We still have a lonnnnng ways to go in potty training and I really had no intentions of starting until this summer but Miss Zoya seemed interested so we're taking off...but very slowly :) Maybe by the end of summer she will be potty trained? That would be beautiful! We well see. We are nowhere near close to potty trained for poop though...the nice thing about Zoya is she only likes to poop at home in her crib...ha! So it is hard to catch her and when I do she STILL won't go on the potty!

School: Is she really old enough to talk about school????? We had Zoya's transition meeting and the plan is for her to start preschool in the fall. She turns 3 in June and I'm off work all summer so we won't have her start until the fall.  Our goals for her are social and behavioral mostly. We just want her to learn how to play and follow directions from someone other than mom and dad, make friends, and participate in group activities. Since these are our goals and Zoya learns best by observing others, we thought it was really important to choose a typical classroom as opposed to a special education classroom. That very well could all change in the future as her needs and goals change, but for now we're taking it one day at a time! She will attend a typical preschool with 3-5 year olds three days a week from 9-12. The program runs from 9-1:30 and they offered two days a week for Zoya but we really felt 9-1:30 was way too long for her and we felt in addition to fewer hours per day, she needed more frequent visits per week to keep the consistency in her schedule. If she went two days a week she'd go T/TH and then be off 4 days before going back the next week. She will do better with more frequent, shorter doses I think:) So they didn't have a problem with Zoya being picked up early or with going a third day. The best part is that she will be across the hall from my classroom! It will be great knowing she is so close. I will try not to peek in a hundred times a day...although I'm sure I'll be way too busy to do that anyways! She will get her therapies (occupational, physical, and speech) at school. That means we will be saying goodbye to the in-home therapists when she turns three. She is also going to be getting a private speech evaluation very soon and will start private speech therapy (in addition to the in home therapy) toward the end of March. I'm already losing sleep over worrying about preschool and how she will do and it is 6 months away!!! 

On a side note I'm pretty sure Ukraine gave us some incorrect information on Zoya. Lately we think she may be closer in age to SIXTEEN with her sassy attitude ;) Ha! Where does she learn this stuff? Wouldn't change her for the world!

Bad Mommy! (Potty Update)

Zoya has been doing fairly well with going potty. We have switched mainly to pull ups except for nap and night time. Last night and tonight I tried big girl underwear and last night she stayed dry yay! She WOULD HAVE stayed dry tonight if I would have listened to her. It went like this:

Zoya signed potty and went a lot, 10 minutes later....repeat, 10 minutes later.....repeat, 5 minutes later she asks again and I say "you just went like three times...you don't need to go AGAIN!" She asks AGAIN and I say OKAY, let's go and we go to the potty and she had peed her pants....no good mommy points there!

She has recently started asking to go potty quite a bit....before she only asked here or there and not consistently at all. I'm trying to figure out if she is making the connection and asking when she has to go (obviously she CAN do that I've learned after tonight), or if she is just asking to go because it's fun to do. This past week she seems to have to go at least once every 30 minutes and sometimes more, so I'm not sure she is emptying her bladder the whole way or why she has to go so often lately.  When we first started the pull ups she was dry for longer periods of time and could stay dry for an hour...so I don't know why she is going so frequently now. We haven't changed her fluid intake at all so that isn't a factor.  Poop is a whole other story! I think she's getting closer to pooping in the potty but we shall see! She is so proud of her big girl underwear! We even put a pair on her bear :)

My plan is to just put her in the training underwear a few hours before bed each night and not push it, just get her used to them and then when she is more consistent maybe increase her time wearing underwear. I would definitely NOT take her out of the house without that pull up!!! Not yet! Slow and steady, slow and steady!