I Want That!

I wrote the other day how Zoya said "I want that" to me with no prompting at all...I tried to get it on video here. I'm so proud of her! It is probably hard for others to understand what she is saying but between her signs and words I think it's pretty cool...you can see how far she's come! You will see her "groping" for words and nothing comes out...that is very common with apraxia and something we are working on in therapy. Check out my big girl!

A Case of the Giggles

Had to post this video...Zoya was cracking herself up on the way home from speech tonight. No worries Shawn was driving while I video taped her!

Maybe you had to be there but this girl had us laughing hysterically!

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 :)

Last Day of Fun with Carrington and Shelly :(

Smooches

More smooches

Silly girls!

Zoya just loves "baby" (even though Carrington is older, Zoya calls her "baby")

"Look at me...I'm so talented I can do PT and make funny faces"

"Wait a minute I thought I was on vacation...why do I have to work on my skills?"

Shelly thought it'd be fun to try all the bargains on Zoya at once LOL. The tutu skirts with leggins are sizes 6-9 and 9-12 months for baby Laina...LOL.

Hanging out by the lake :)

Lovin' on Abby and Seth

Sailing the Zoya....

"Ummmm get this thing OFF me!!!"

"Okay this is not so bad afterall...a nice boat ride"

Seth snuggling Carrington

I can't believe our time together is coming to an end. It is such a blessing to meet another woman who is so much like myself...I swear we were sisters in another life! God is good and I love when he puts people in our lives for friendship, fellowship, and inspiration!

Contagious Laughter....

This girl can laugh like no other....you can't help but crack up when you watch this video! I could have tickled her all night!! Shelly says I'm not allowed to play with Carrington before bed anymore because I got her all riled up! BUT she just went to check on her minutes after putting her to bed and she's sound asleep snoring!!! I guess I WILL be allowed to play with her before bed again...I wore her out! I told Shelly I needed to video tape her laughing because I just wanted to bottle it up. How can this not make you smile?

This is the child who was MINUTES from death. This is the child who was brought home at 3 and a half years old weighing ELEVEN pounds! This is the child who never knew laughter...for 3 and half years. This is the child who was deemed worthless by her society. This is the child who who was protected by God and held on long enough to know the love of a family....and who has changed more lives than any of us will ever be able to comprehend. God has a plan for this angel....I stand in amazement watching it unfold and looking into Carrington's beautiful soulful eyes and seeing a glimpse of heaven.

Lovin' on Carrington (and Shelly)

She LOVES to be tossed in the air and dropped fast!! I think her mama is in trouble when she's old enough to ride roller coasters!!!! Could she be any sweeter????? :)

This girl is a daredevil!!!!

Silly Shawn making Carrington giggle!



Shawn and Carrington dancing



Zoya is sooo good with Carrington....even though it looks like she's clobbering her here she was gently stroking her face. She's going to make a great big sister!

Girls!

Carrington says "Hey Dad, I'm livin' the good life in this nice cool weather....miss you."



Kisses....Zoya can't give her enough kisses...



Sweet girls

More kisses :)

LOOK WHO IS VISITING!!!!!

Shelly and Carrington are here!!!!!

Look Ethan-your mom is in the computer with Zoya!!!

I cannot even believe how much Carrington-bug has grown!!! She is 20 pounds, 2 ounces! woah! She is still teeny and the sweetest little love bug. We snuggled all afternoon and I got to hug and kiss this little blessing while Zoya napped (shh don't tell Zoya she'll be jealous). Carrington is a little daredevil who loves to be tossed and tickled. It was awesome to see her "dying laughing" instead of dying (period). God is good.

Oh and of course its nice to see Shelly too after our 2 year long email/phone relationship we finally get to meet!!! It is like we've known each other our whole lives....can't wait to stay up all night talking...thats what we do best!!!

Visitors :)

Getting ready to pick up our extra special visitors from the airport....wait until you see who is coming!!!! :)

THANK YOU! and Questions Answered...

Wow....I am humbled by all the comments and emails from all of you followers!!! You guys rock!! So many questions, thoughts, and ideas to look into....and so much support! My favorite comment was from anonymous, "I can say as a mother of 7 that kids are just nuts. I'm not kidding, if adults showed the type of behavior that I've seen in my 16 years of parenting my totally average kids, they would be on anti-psychotic medication." Right on sister! As I've said a million times, the hardest part of parenting a child with down syndrome who was adopted from an orphanage is trying to figure out what is causing some of the behaviors we see....DS? orphanage? toddler?  Is it totally normals stuff other 'typical' kids face too or is it above and beyond that? Having not parented any children before Zoya I'm always wondering what is normal and whats not. My instincts tell me theres something more than just typical weird kid behaviors, though it did make me feel so much better to hear some of the stories you left about strange and unexplainable behaviors in your own kids or kids you know.

So to answer some questions.....

Do you use melatonin?
Yes...we have since we arrived home with Zoya and it really does help her to settle down and fall asleep. She sleeps so well the first couple hours, and then starts the tossing and turning. We've noticed she goes through cycles of sleeping well followed by not sleeping well. When she was first home she NEVER slept soundly. Then she'd have a few week period where she'd sleep well, followed by a long period of restlessness. The restless periods have gotten to be less and less the longer she has been home, but we still see the cycle of restless sleep....thankfully the restful sleep periods are lasting longer and longer...we just happen to be in a restless period right now. That makes me think its likely more anxiety related than medical related, but I don't know.

 We had better results with a Magnesium supplement.  It is a natural stool softener and worked wonders.  Ours was in powder form from Kirkman labs (mail order or we would purchase it at our Dr. s office).  Another way to get magnesium into their systems is through a long soak in an Epsom Salt bath.  We also noticed that after we started the oral Magnesium supplement, our son seemed to sleep better through the night.  (Thank you Lord!)  I believe (and I've read) that it has a calming effect on the nervous system.
Thanks for this info...Zoya sees a nutrition specialist and I will ask about the magnesium. She takes calcium nightly which really helps to calm her as well...not sure if it has magnesium in it or not. I will definitely check into this. And cool advice on the epsom salt bath..thanks!

I know it sounds bad, but could she be sleeping too much (during the day)?
I really don't think so because she gets very crabby and tired and will lay on the floor and yawn and rub her eyes if it is past nap time some days. Some days I think she could skip the nap and be fine, but most days I know she really needs it. She falls asleep at night almost as soon as I put her in her bed.

Have you had her checked out physically lately to make sure there's no underlying illness such as blood sugar issues etc?
I don't know that there's ever been a thought to check blood sugar levels unless that is part of routine blood work that she would have had done.

Maybe that's just a coincidence, but when my son's doctor says to be careful to recognize the symptoms of hypothyroidism, she mentions the symptoms you mentioned above. We check the hormones once a year. Have you had this testing done?
Yes she is up to date on her annual thyroid testing...she will be due again in November. Everything was normal last time.

How does her anxiety manifest itself? Crying? Restlessness?
CRYING....LOTS OF CRYING. Funny thing is she pretty much had no idea how to cry when we met her. Then one day she realized her needs are met and she gets attention when she cries and she can cry to communicate with us. Then I wished she never learned to cry...LOL jk. Then she started having uncontrollable crying....like she could NOT get herself under control. She is learning to control her crying a bit better, but sometimes I feel like its a ticking time bomb never knowing when she'll just start crying due to anxiety....like if we go out to eat or something she is fine one minute and then has a look of terror the next. I went through a little bout of anxiety years ago and I remember feeling so out of control of my emotions so I wonder if she feels the same. We are trying to give her lots of tools to calm herself down when she starts getting upset. Like requesting her happy pillow or trying to let her feel in control by giving her choices.  Often she will ask for us to pick her up and then she feels much safer, but lately even THAT hasn't been enough at times.

Does the anxiety go away? Like, at speech does she relax? or is she anxious the entire time?
The anxiety usually lessens usually doesn't completely go away...she is always "on guard" in new situations. Like tonight at speech she was anxious at the beginning, then started to relax quite a bit, then every strange sound she heard (people walking or sneezing) she tensed up and got scared. Sudden sounds have really been bothering her lately and triggering anxiety. My brother sneezed really loud this weekend and it scared her so bad that she wouldn't even go near him until the next day LOL.

Also, I meant to add we are taking a break from therapy for the summer. Maybe a short break might be good for you, too?
Besides speech therapy we don't do any other outside therapies. We have been talking a lot about what we can cut out because we pretty much went from all in home therapies and not much else out of the house to outside speech therapy twice a week, swimming lessons, AND preschool, which could be a cause for the increased anxiety we are seeing. Too much too quick for Zoya. Swimming lessons are over, preschool is just once a week (but will be 3 mornings a week in the fall-we are working on a plan to slowly ease her into it).

From what I understand, it's recommended that every child with Ds have a sleep study by the age of 3. Apnea is just so prevalent. AND What does your doctor say about sleep apnea? Up to 75% of kiddos with down syndrome have sleep apnea (source is Up To Date)and it causes a myriad of problems.... Might be worth checking out- I believe that every child with down syndrome should have a sleep study done due to the likelihood of apnea.
I understand that as well (although no thanks to any doctor we've ever seen even bringing it up)...I found that fact out on my own and asked her primary ped. about it and she said a sleep study would be a nightmare for Zoya (which I totally agree with) and unless she is having issues that would point toward a sleeping disorder that she didnt' see a need. When we go back to the DS clinic in the fall I'm going to ask about it. But usually when doctors ask how she sleeps I say GREAT bc she sleeps so long...I tell them she has on and off cycles of restless sleep but nobody really seems concerned. She only snores if she has a cold...I know apnea can be present without snoring contrary to popular belief....but the usual options to fix it are to have tonsils and adenoids out and/or a c-pap machine....I really don't see Zoya keeping that on throughout the night. 
 I would recommend trying prune juice mixed with apple or orange juice. You can serve it cold or warmed up a touch. A small glass a day surely does wonders- a doctor I followed gave this in the hospital before starting any medications :)
We do diluted apple juice....the only thing about juices is the sugar content...Zoya does NOT do well with sugar so we try to keep the juices to a minimum...even natural fruit juices don't go over well with her. We tried regular prunes but Zoya gagged on those.

Anxiety- is one of the physicians that you are looking at talking to a developmental behavioral pediatrician? I rotated with one of these and he was FANTASTIC!!! May be something to look into if you are interested- in general they give parents strategies to deal with the behaviors to help the child cope.
The place we are hoping to get into in Cleveland has a DBP....this would be helpful (I hope they can give us ideas we haven't already tried).

So first off speech... I am in Ohio, but near Cincinnati so opposite ends here, but we have Help Me Grow and once approved (which DS make it automatic) they send a ST out to your house weekly. Is that not an option there?
I keep getting this question A LOT.  Our state does in home therapies up until age 3...Zoya was getting speech therapy once a week for an hour in our home. When she turned 3 services were turned over to the school district. In her IEP she has speech thearpy listed once a wee for 30 minutes...although most of that is not a pull out session...it is working with her in the classroom and helping classroom teachers know how to help her better with her communication. There is some pull out but definitely not enough for what Zoya needs. We started taking her to outpatient therapy once a week where we live and I still wasn't really seeing much improvement or progress like in all her other areas. That is when we decided to look into apraxia and the PROMPT therapy.  We had a private evaluation done by two PROMPT trained therapists who impressed me a whole lot (posted about it a month ago maybe...too lazy to link it up right now). They concluded Zoya has "severe motor planning disorder which is greatly limiting her ability to verbally communicate"....AKA apraxia. Play therapy does not work for apraxia. This specific PROMPT approach (google PROMPT therapy) is designed for kids with apraxia and after tonight's session I'm even more convinced this is THE ONLY WAY we are going to see improvement with Zoya's speech...this therapy is AH-MAZ-ING...it just stinks we have to drive so far to find a trained therapist. There is simply no substitute for this therapy.  Other mamas who've gone through the PROMPT therapy can chime in here with its awesomeness! Here is a blog (although I never commented) that got me really thinking about Zoya having apraxia and this is where I learned about PROMPT therapy and began researching it.

And just to add...as far as the poop situation....Zoya had awful diarrhea when we first brought her home, we finally did the gluten free diet and it did wonders....then she started having some constipation here and there...nothing horrible until last week when her teacher called me and said she was very worried about her. 3 hours later and she finally worked it out after miralax, 2 cups of apple juice, and a laxative...poor thing...then she gets scared to go the next time bc it hurt so bad...psychological constipation ha! That is why we decided to try the miralax but sheesh I'm thinking we could drop three grains of that stuff in her drink and it'd be enough after what happened these past few days...sheesh!

WOW THAT WAS A LOT! Thanks for all your comments and thoughts and ideas...you guys rock!

Off to prepare for our special visitors tomorrow....wait til you see whose coming!!!!!!!!!!!

The Tough Stuff

Today I'm gonna play the "parenting a child with special needs is really hard" card. Or maybe it's the "trying to get the help your child needs even when you are a very knowledgeable parent with a background in special education is near impossible" card.  (sigh) So go ahead and click the x at the top of your screen if you came here for cute pictures and happy thoughts today!

I've talked about Zoya's anxiety before. I've talked about having post traumatic stressors, possibly PTSD from orphanage life. She has specific triggers that make her very anxious and I just can't figure it all out. People with DS are more prone to anxiety disorders as well. So sorting out the cause of the anxiety and trying to figure out how we can help her has been difficult to say the least. Zoya is very comfortable and happy when she is home with us almost 100% of the time...its other places and people that make her anxious. I can't quite organize my thoughts fully with the situation and need some help...some professional advice....someone who will meet with her and us and give us an opinion of what is causing the anxiety and how we can help. We've tried all I know how to do. It seems to me the anxiety is getting worse and not better and I feel like I'm failing my girl. I will go to the ends of the earth to get her the help she needs but today I feel like I reached the end of the earth and fell off! LOL. I'm ready to waive the flag of surrender on this one.

So I contacted the fabulous doctor we saw at the adoption clinic in Pittsburgh when Zoya was first home.  She gave me a contact number for a group of professionals all in one place including a psychologist who specializes in PTSD, a Dr. who specializes in DS, and another who specializes in adoption. Well trying to call them and coordinate an appointment was harder than trying to get a hold of the President. I don't have energy to go into all the details....just hoping they call me back and we can get something scheduled and someone can help!

One question I do have, if anyone can answer.....Zoya sleeps 12 hours a night and usually naps 2 hours, sometimes 3 hours. I'm SO not complaining...but even after sleeping 12 hours some nights, like last night, she still seems tired.....tired in the "tired and cranky" sort of way....not always but sometimes.  I wonder if she is not sleeping well...she's always been a restless sleeper, but her ped. said it was nothing to worry about. I could request a sleep study but with her anxiety I might rather be fed piece by piece to sharks. Could the anxiety be a result of not sleeping well if she does has sleep apnea or some other sleep disorder? I suppose the only way to find out is a sleep study. Anyone have experience with anxiety cured by fixing a sleep disorder? It's a long shot but it can't hurt to ask...

And to top it off we have speech in Buffalo tonight, which is proving to be quite the ordeal....we go during rush hour which is the only time she has available (other than Zoya's nap time which would be even worse) and its been taking 2 hours to get there. Last time it took over two hours and then Zoya cried the first 10 minutes while I tried not to cry myself.  She needs this type of therapy, I can see progress already, but at what cost? When do we say enough and just hibernate in our house and enjoy life? I want her to be all she can be, but I want her happy too.  This might be the hardest part of parenting...knowing when to push and knowing when to lay off.  Finding that balance is hard.

And then there's the poop.....oh I've been up to my elbows in poop. Zoya had some pretty bad constipation a week ago so we started her on Miralax....Ummmm NO.THANK.YOU.MR.MIRALAX! This is even worse :( I've never experienced anything like it in my life! 4 changes of bedding, 4 loads of laundry, and 4 baths....in the past 2 days...well lets just say this is my new diet plan and its working fabulously well! AND I'm hoping its all out of her system before we get in the car and drive 2 hours to speech and 2 hours back tonight....

And this concludes the session on "I'm-having-a-bad-day-101." Thank you for your time...please feel free to fill out the evaluation form on your way out.