Lina's health

It has been entirely too long since I have updated this blog..... Pretty sad to come back in November and I still had an Easter background!  Going with generic now since I never know when I will next get to sit down and write.  For the most part all has been well in our household- kids are all thriving in school... Kaylin started middle school this year and LOVES it.... Evan started Pre-K at our home school where Lina and Justin attend and all is going soooo amazingly well... I have been so thrilled with all of them!  Now that we have a consistent schedule five days a week I have been volunteering in school, and it feels soooo good to be back in the classroom and work room again.

I need to take a moment to catch up a bit since Lina had another episode this morning, and to explain things requires more than just a Facebook post.  First I will provide some back story of when this all started....

March 18th: I was in Evan's room getting him ready in the morning when Lina collapsed at the top of the stairs and slid all the way down, lifeless like a rag doll.  Justin saw her collapse and yelled her name- I came running to see her head bobbing limp as she slid down the entire staircase, thankfully feet first.  I rushed down to the bottom where she laid with her eyes wide open, but didn't seem startled as if she remembered falling down the stairs.  I got her up and she acted like she was going to vomit, gagging and choking.  I brought her to the kitchen and sat her down, and she settled down and was fine the rest of the day.  I took her to the doctor for a cold she was coming down with, and the physicians assistant we saw did not seem concerned about the episode.

May 27th: I get a call from school that Lina had a suspected seizure and was being sent by ambulance to the ER.  She had been a bit sluggish in Phys. Ed. class earlier in the day- it was very hot outside.... After returning inside, she tripped walking into a classroom and fell, bumping her elbow.  This is when she then collapsed into her assistant's arms and her eyes rolled back into her head... episode lasting about 30 seconds.  I met the ambulance at school and followed them to the hospital where all checked out just fine.  We followed up with a neurologist who suspected something called a "convulsive syncope" and we think perhaps the incident from March was the same thing.  He referred us back to the cardiologist to make sure her heart rhythms were ok, and when we returned to the cardiologist everything indeed checked out perfectly fine.  Another EKG was run and her rhythms were perfect.  She had first seen the cardiologist shortly after coming home to rule out any heart conditions since half of all babies born with Down syndrome have a heart defect.  Lina's heart was functioning absolutely fine- the tech doing the echocardiogram pointed out the shape of the bottom of her heart where one of the valves was, and that due to the shape he could tell there was once a hole but it healed fine on it's own.

This morning I got Lina out of bed and took her into the bathroom as usual to have her use the toilet and get ready for school.  I helped her get dressed, and then began to comb her hair.  Lina turned to me just as I was getting started and hugged me, as if she knew something wasn't right.  She then collapsed, eyes rolling back into her head.  She was very clammy and looked a grayish color. I laid her down on the floor and the episode lasted 15-30 seconds.  She was then able to respond to me but was very, very weak.  I got her up and she was anxious to get on the toilet again.  First I thought she just needed to sit, but then found out she had a bowel movement since her body lost control.  As she is sitting on the toilet and I am trying to peel the pants off her clammy legs, she can't even hold her head up.  She rested it on the toilet paper roll as I worked to get her cleaned up.  She again acted as if she was going to vomit, gagging and making choking noises.  I got her downstairs where she settled, and had her eat some breakfast.  Once again she acted like she was going to vomit as I spoke to her neurologist on the phone, but ended up ok.  She needed to hold her head up with her hand as she ate but eventually regained her energy.  She stayed home from school today and has been fine since.

Her neurologist wants her to have another neck x-ray to rule out any issues that may have come up since her last x-ray- it is common for people with Down syndrome to have instability in the neck, but her first check when we brought her home was fine.  The neurologist also wants us to return once again to the cardiologist to make sure all is ok with her heart.

I have not done much research at all yet for this convulsive syncope and am almost afraid to Google since you never know what kind of horror stories you will find.  We do need to find out what is bringing these episodes on and if there is a way to prevent them.  Please keep Lina in your thoughts and prayers as we try to find answers.

Happy Gotcha Day, Lina!

Two years!!!! Cannot believe it has been that long.

This tiny little nugget placed into our arms....

...and taking a trip of a lifetime.  Looking back through these pictures it is amazing to me to see how much she has grown in these two years.

entertaining herself on the 10.5 hour flight home

When we first brought her home she weighed 33 lbs and was about 33" tall.  For those who have met our family in person, that is about the weight Evan is now, and I think he is taller than that (it's been several months since his last check up, so I am not sure of his height off hand.  Bad Mommy).

Evan wears this shirt now- size 2-4.  Fits him perfectly.

 She wore size 3T-4T, and the size 9 shoes I brought with us to Russia were a size too big.  I carried her all around while we were there, easy peasy.  There is no way I can do that now!!  She was just at the doctor last week and weighed 45 lbs and measured 48" tall!!  I didn't believe the height (they called her back to take her vitals and I waited in the waiting room) but remeasured her when we got home and dang if she wasn't 48"!!  She is wearing size 6X-7 clothes and outgrowing some of her size 12 shoes.  12 lbs and 15" in two years.  Crazy good stuff!!

Let's talk progress.  In school she just had her sight word assessment and read 55 sight words!! FIFTY FIVE!!  The number expected for Kindergarteners by the end of the year is 50.  Amazing.  Her speech is really coming along, though still quite delayed.  She has made tremendous progress though, and has also learned a ridiculous amount of sign language.  Her one-on-one assistant at school is an ASL interpreter, so Lina knows much more sign language than any of us at home now.  Crazy good stuff.  She was also given a voice output device to begin using to help communicate during school as well as at home.

If any of you in the special education community are familiar with a PODD book- this is very similar, just in touch screen format.  You press different buttons to form a sentence and then the device will read it back.  Once Lina gets the hang of it this will really help her communicate with her peers as well as participate in class since not everyone is fluent in ASL.  And amazingly enough it will help her speech develop as well.  But this will take some time for her to grasp- right now she sees it like an iPad, and for us at home an iPad is generally used for playing games.  Lina likes to press the different buttons, especially the sight words she knows, and will just push random things.  At school she is mainly using the device at recess and lunch where she can use it with her friends in a social setting.

Math is still a challenge for Lina, and this is often the case for those with Down syndrome.  She has still made good progress with her counting, and her writing is really coming along as well.

name written on back of her art work

And because I'm sure you all want to see the front ;) Her coloring has really come along too.

Attachment really was never an issue for us as she bonded to us pretty quickly, especially me.

first summer home

  One issue we are still dealing with is getting up in the morning.  Lina will not get out of bed on her own and after two years home still waits for one of us to go in her room and get her up.  We learned on day one in Russia that she suffered through some serious abuse at night while at the orphanage.  She role played with her dolls, tucking them in nicely, turning out the light, and then quickly turning the light back on, scolding baby, hitting baby on the head, and even taking her shoe off and hitting baby over the head with her shoe.  This was repeated over and over.  It took her a couple months at home before she began treating her babies lovingly, and has not hit them since.  And it took a couple months for her to get to sleep without crying- the month was so incredibly heartbreaking listening to her cry out in sheer terror.  I slept in her room for a while and rocked her each night before laying her down, but she was still frightened.  She has gotten past that thankfully, but it has been ingrained in her to not make a peep once she is tucked into bed, and not to talk or get out of bed until we go get her.  I have put little pictures up on her wall right by her bed for a social story, and we have talked through the story several times about waking up, getting up out of bed, and going potty.  She will point to the pictures and talk through the story, but still will not get out of bed.  I have no idea how long this will take.

We are also still working on her finger sucking habit.  During the day she is usually ok unless she is tired or bored.  Nighttime we put little gloves on the two fingers she sucks (first two fingers) and she has adapted to suck on her last two fingers.  She doesn't suck them all night though.

Lina, you have come soooooooo far, my precious daughter.  I look forward to watching you continue to grow and blossom.  You are such a smart and amazing little girl and I am so privileged to be your Mommy!!

World Down Syndrome Day and picture overload!!

Happy World Down Syndrome Day!!!

We celebrate on 3/21 since those with Down syndrome have 3 copies of the 21st chromosome.

And to represent those pretty stripey chromosomes we are wearing crazy socks!!

I tried getting a group shot of the kiddos this morning sporting their blue and yellow (Down Syndrome Awareness colors) and crazy socks, but someone wasn't in the mood to pose for a photo (Evan) and decided to head butt his sister in the process of trying to get down, which caused them both to burst into tears. :-/ Soooooooo.... photo op is postponed until this afternoon when they all get home from school..... IF I'm lucky!!

Someone else didn't mind posing after the big kids were rushed out the door....

We just celebrated "Da" Day on March 15th- the day we passed court in Russia!! Yayyyy!!!

After Mr. Evan returned home from school this morning he was in a much better mood and I was able to grab a pic.... as he was quickly prying off his socks!  This boy HATES wearing anything on his feet. 

Turkey.

Going to play picture catch up now since it has been so long since I've shared any photos here..... Going to back it up a month and breeze through snow and ice storms (BLAH!) as well as Kaylin's 11th birthday!

I cringe posting these pics because we are SOOOO over winter!!!  It's pretty bad when even the kids are sick of snow days!  They managed to have fun the first couple snow falls but after that they refused to even go outside!

I even managed to catch a smile before taking Evan inside- he really isn't a fan of the snow whatsoever.

And ice is just nobody's friend.  But it sure is pretty to look at on the trees.

Ok, on to more fun things..... Kaylin's birthday!

Her big surprise gift was a new American Girl doll from Aunt Karen!!  

Since Kaylin and her cousin have birthdays one day apart we always celebrate together, and the girls love it. :)  Lina loved helping cousin Sara open her presents!

Kaylin also enjoyed a roller skating party with her friends. :)

Yes, I made the cake- don't make fun! :-P

Kaylin also had a date with Daddy for the Me and My Guy Dance

And Mommy had a date with Daddy for his birthday present at the Caps game!! Rock the Red!!

The three older kids had a character dress up day at school- Lina was Amelia Bedelia, Justin was Melvin Beederman, and Kaylin was Queen Red Riding Hood from Land of Stories. 

aaaaaaaaaaaand... I think we are caught up!!! Well at least until the kids get home from school. ;)

IEP's and other school updates

Brushing the dust off my good friend here.... I couldn't believe my last post was from January! Ok, I sorta can....

We've been busily plugging away here, and sick of $n0w..... c'mon SPRING!!!

I just attended Evan's annual IEP meeting last week and I was soooooo nervous, which seems to have become a pattern for me when dealing with his plan.  Last year I had issues with the goals written for him as well as the amount of therapies he was receiving.  We had reached a good compromise and I was happy.  This year, I was quite pleased with most all the goals they wrote for him *WHEW* but I was super nervous about discussions of his placement for next year.

This has been Evan's second year attending the county's special education preschool program as well as his second year attending a private Christian preschool.  It was and still is high priority to me that Evan attends a *typical* preschool setting as well as receiving the therapies he needs.  Attending both these programs has created all sorts of different routines and schedules for us to follow, and it's not the most convenient for me to drive all four kiddos across town three mornings a week to take him to the special ed setting at our regional school.  My goal for next year is for Evan to attend the mainstream Pre-K class at our home school where the other kids attend- right around the corner from our home!  He will be in an inclusive setting, he will receive all his therapies there, and he can ride the bus with Lina every morning!  I used to teach this very class at another school in our county- I was on the curriculum writing committee and I even had a student with Down syndrome my last year of teaching, so I was ready for a fight!  I admit I was expecting resistance from the school staff at the regional school which is why I was so nervous.  There is one administrator there in particular whom I am not a fan of to put it lightly, and it is she who made Lina's enrollment into school so stressful last year.  Thankfully this administrator wasn't at Evan's meeting this year! Yeehaw!!

We get through all Evan's goals and discuss placement, but I notice his teacher is only addressing placement for the remainder of this school year.  IEP's are written for an entire calendar year, yet no one was addressing next school year.  Ummmm??  So I open my mouth and ask, especially since I made it known to several team members what my wishes for Evan's placement next year would be.  "Placement is a parent decision, not a team decision...." Wha???  Why couldn't anyone tell me this before?? Good grief, all this stress for nothing!  I was very glad I invited our home school principal who not only added some meaningful input but also intends to get the ball rolling to line up one-on-one support for Evan which he needs in the inclusive setting.  His private preschool was gracious enough to hire an aide for him and this has been quite beneficial.  I am sooooo looking forward to him attending our home school!!  Lina has had a wonderful experience thus far with the therapists there as well as the special ed staff- I love them all.

Some recent accomplishments for Evan:
*He knows and can name all uppercase letters as well as some if not all lowercase
*He can count consistently to 10 and sometimes to 20
*He is reading many sight words!  I need to sit down and keep track of how many he knows.

Now on to Miss Lina!  Lina just recently acquired a voice output device from school- she will be using it in school as well as at home.  It comes home with her each day.  Right now she is mainly using it during lunch and recess at school since she is still learning how to use it, especially in social settings.  If any of you are familiar with a PODD, this is just like that only in electronic format.  It has a touch screen, and unfortunately since Lina has used the iPad at home- she sees it more like a game than a communication device.  She enjoys pressing random buttons, especially the words she knows how to read.  She knows many sight words- and is actually considered on grade level with her reading!  She still struggles with rhyming words, especially since her teachers have focused on beginning sounds for so long- she seems stuck on that concept and has trouble listening to the final sounds in words. On grade level with reading sure is music to my ears though, especially considering she has only been in this country for 2 years come April 21st, and had received zero education prior to coming home. So stinkin' proud of her!!!

I will get some pics up soon I promise!!

Talent Show 2014

Tonight was Kaylin's school talent show and she did an amazing job as usual!!

sporting her new glasses 8-)

Please forgive my shaky hand on the camera.... Aside from forgetting a line, she totally rocked it!

SO very proud of my talented girl!  Can't believe she turns 11 in just a couple weeks... EEK!!