Catch-up

I have waaay too many of these, but it's time for me to get a couple of things down before I forget. Madelyn was inducted into NHS (National Honor Society), along with several of her friends. We were very proud of her.

Both Madelyn and Tyler had their Spring Orchestra concerts, and they participated in the annual All-District concert where all the students in orchestra in the whole district play a few seperate songs and then a couple together. The lower grades play the same songs every year (that's where they all start, after all). But it occured to me the other night that I've heard those same songs 9 years in a row + 3 kids practicing at home. I should could be really sick of them. But I'm not. I'm a person who takes comfort in the expected, the routine, the planned. So it was nice, and comforting, to hear some familiar songs and fun to hear some new ones. Of course I got no pics of my violinists, they were too excited to get ice cream after the concert with their friends! Tyler was confirmed into our church last Sunday. We're Methodists. Confirmation is a time to learn about our faith, and our church, bond with the rest of the Confirmation class, and learn about other faiths. They went on a couple of overnight trips and had a great time. Ty told me any time he came home what a good time he had. That, in itself, is huge. But that it involved church was extra huge. After the past month, that was a giant comfort to my heart.

Jack's big kindergarten IEP is coming up. This is the meeting where we will determine Jack's present level of performance, placement for next year, and set some goal he will work toward in kindergarten. Now quite honestly, I have visited our home school, where I thought Jack would attend, where all the other kids went, where I know people and feel comfortable, and I don't think it is the place for him. Breaks. My. Heart. And I am not exaggerating. I left the school that day with a lump in my throat and a tight chest, and I wondered what the heck I was going to do. So I pulled my mommy hat on tighter and decided to visit another school in the district that I had heard good things about. Now I should explain, I am very happy with our school district overall. Yes, we've had a couple of issues but they've been resolved in a manner that's given me confidence in the district in general. I don't want my kids in private school. I've never been given convincing evidence that they're better than our district here. So ANYWAY, I went to visit this other school. The principal is someone I was familiar with (and have a good opinion of). The building and the people I encountered there were welcoming. The set-up for kids with special needs seems accommidating to all levels of functioning, easily adapable to different personalities, and eager to learn what works for each child. Jack would have access to a regular kindergarten class, and a special ed class. (Don't hate me for not being all about inclusion - I'm all about what works for my kid and he would be lost in a regular class all day, even with a 1:1 para. I want him to be successful and included where it will be the most beneficial to him.) So that will be coming up soon and I'm sure I'll have a big report on that.

I am now a new member of a terrible, awful, no-good, very bad club

Today is the day after Easter.  I won’t be posting any cute photos of the kids, wearing pretty Easter clothes and chasing down colorful eggs.  As a matter of fact, I may not post anything Easter related again.  I won’t ever look forward to Easter the way I did every year before this one.

My mom died last week.  Out of the blue.  Just didn’t wake up on Tues.  Her funeral was Sat.  It just doesn’t seem real and I pray daily that it’s not – let this be a terrible dream.  She was the one person in the entire wide world that I knew would always be there for me.  She never got to see Dasha’s hair cut.  She didn’t get to hear about our trip to the zoo week before last.  She won’t get to see any of the kids (except for Andrew) graduate high school, or get married.  She won’t ever come visit and live on the couch for a week again.  I have to live the rest of my life without her.  How the hell am I gonna do that.

My mom didn’t quite understand why we needed to adopt a little girl from halfway around the world who has Down syndrome.  But she wished us luck and asked what she could do anyway.  She could not have been more proud of her newest granddaughter.  She was sad when we found out Jack would be born with Ds.  But she wanted to be at his birth and stayed to get help me and get to know him anyway (and fell in love with him just like the rest of us).  She was thrilled when the other kids were born and so happy when we were all together.  She loved us all more than we’ll ever know.

I already miss her sitting in her chair, her little pile of kleenexes and lifesaver wrappers, her reading glasses and crossword puzzles.  No more cherry Cokes from Steak ‘N Shake, no more pj’s for Christmas, no more 60 degree rooms in July, no more envelopes full of newspaper clippings in my mailbox.  There’s something from my mom in every room in my house.  Neither of us liked having our picture taken so I don’t even have any of the 2 or us together in the last few years.  That was really, really dumb.

So here I am, in the “I don’t have a mom” club.  I hate it here.

Dasha’s Birthday

Dasha has a very special birthdate – it’s March 21, World Down Syndrome Day!  Cool, right??  However, because it was a special day, and because Dasha’s birthday is a few days before her sister’s and they are having a party together, we didn’t do a whole lot of celebrating.  A little bit, but the party will be later.  so I’ll post a few pics of the birthday girl on her special day anyway.

Is there anything more precious than a sleeping child? 

Here’s our sweet girl on our way into school :)

And here’s our little beauty later that evening, while we were singing ”Happy Birthday” to her.  Rest assured, there was cupcakes and ice cream right after. 

More cuteness to come!

I’m Tired

All the time.  And I’m sick of it.  I’m sick and tired.  I forget things, appointments, plans.  I have 582 unfinished projects.  Tonight, Tyler was going to an overnight event for his confirmation class.  I did remember that.  However, I did not remember that he had to be dressed in nice pants.  We realized about an hour and a half before he had to be there that his one good pair of pants was, you guessed it, completely missing.  So while we were at Wal Mart purchasing new pants, I also got him socks and black shoes.  As long as we don’t lose them, we’ll be ready the next time.

So I managed to pull a win outta that situation.  But most of them, I don’t.  I don’t like feeling like this.  I used to be organized.  I used to have lists, organized thoughts, shoot even a calendar in my head.  Dates used to stick and I would remember to get ready ahead of time.  Field trips, birthdays, and meetings were planned for AND attended!  Instead, now every day is a surprise.  I struggle daily to try to keep it together.  I can’t seem to focus.  I hate this.  Am I just this old?  Is senility setting in already?  Do I have too much going in to my head?  Do I need ginko?  Anyone?

Jack got a new bed - again

Several months ago, we decided it was time for Jack to have a big boy bed, so we got this:

 

He loved it.  We loved it.  He and Dasha played in there a lot.  But there was a problem.  Even though I measured and figured the bed would fit in Jack’s room (which it did) there wasn’t enough space left over.  His room is 9x9.  Small.  The “hood” of the car bed faces the closet door, which would not open but maybe halfway.  There was only a narrow strip of floor available to play on.  It didn’t work and I was bummed.  So M and I decided to take out the racecar, and put in just a regular bed.  Guess what?  It works!

Cute headboard, room to play on the rug, storage underneath in plastic boxes, aaaaaand, I can open the closet door!!  Win, win, win.  Except, did Jack like it?

This is 2 seconds after we showed him the new bed.  He climbed right in and got comfy.  So I think that means we have a win, win, win, win!

Anybody wanna buy a cute, blue, twinsize racecar bed????

Random stuff

When I left the room, I told Jack, “please use the coaster for your drink buddy”.  So he did.

Pica-shoes!

Ponytail!  (There are days in this house I can’t stand the cuteness!)

There’s so much wrong with this lol!  The most wrong part?  It was Saturday!  Not even a school day!

I told them to put everything in the bucket.  They took that literal.

Guess who went to another dance?  Aren’t they pretty?!?!

I have more pictures but they are on my new phone and I need to learn how to download them onto the computer.

We woke up to snow this morning!  But it’s Feb, right? not so unusual.  But we’ve had crazy high temps this winter so far so it was a surprise!  If Jack said “snow” once on the way to school today he said it  50 times!  He’s really talking more now – initiating conversation, telling me things he sees, adding descriptions like the color.  It’s really great.  Finally, the kid is talking! 

Heart Issues

Disclaimer - I don't know how to fix these pics! I will though!

So we found out Jack had Ds prenatally.  The next step was several ultrasounds and a fetal echocardiogram since many babies with Ds have heart issues.  (40% is what is stuck in my brain but as of right this minute I can’t back it up!)  Jack seemed great except the amniotic fluid was a little low a couple of times.  Even his heart was great.

And then he was born.  Within a few hours, it was determined that our little man had pulmonary hypertension and guess what else?  Heart issues.  Thanks a lot fetal echo (you worthless p.o.s.).  Our baby had a small to medium hole between the upper chambers of his heart (Arterial Septal Defect – ASD) and a medium to large hole between the lower chambers (Ventricular Septal Defect – VSD).  They had to be fixed.  Our goal was to get him big enough to undergo open heart surgery.  The problem was between the heart issue and the PH, he wasn’t able to stay alert enough to eat enough to grow.  So our guy had to have a feeding tube through his nose, or a ng tube.  The way he could sleep away while still getting food into his tummy.  Of course the Drs wanted to keep him in the hospital as long as possible but mommy was done with that place.  He was removed from the NICU not exactly against orders but I sure had to fight for him.  I think they were afraid I would steal him if they didn’t let me take him!  Jack removed his own ng tube a few times after we got him home, but after about a week, he was eating the required amount ON HIS OWN!

That was the end of Nov.  Less than 2 months later, our sweet baby boy underwent open heart surgery.  When the Dr called to say they were ready to set the date, I was a wreck.  I was shopping and cried right there in the store.  By the time we arrived at the hospital, I was okay.  I just wanted him fixed.  His surgery was on Tues. 

 

Wed was ugly; he was on morphine most of the day and so out of it.  He slept a few minutes at a time and would cry when he was awake  :( .  Thurs morning he was so different!  They moved him to a regular room, he was only on Tylenol, and that Sat, we went home!  4 days!

Thurs.

 

Sat., right before going home!

 

7days after open heart surgery!

Little did we know almost exactly 2 years later, the little girl that we would adopt was undergoing (in Ukraine) pretty much the exact same procedure!  The echocardiogram shows her surgery was to repair the same problems that Jack had.  Weird!  And even weirder, our cardio says it was a great fix.  Of course I don’t have photos of Dasha after her surgery and we weren’t there to hold her and whisper that it would be okay.  I hope someone was.  I am thankful every day that someone got her that repair.  But her scar looks even better than Jack’s!

Both of them now have near perfect hearts – the cardiologist says so :).  And today is the day, 5 years ago, that all of that started, Jan 23.   

So precious! Jack loves his sister :)